Living Day to Day with Multiple Sclerosis

Symptoms Of Multiple Sclerosis and Info Links

2011-10-10T15:53:00.002-05:00

I am in the middle of a Flare Up and have been spending the day reading questions people have about Multiple Sclerosis. I don't have a lot of energy to write a Blog but I couldn't resist this... I found a Wonderful Page that someone has taken a lot of time to list Symptoms that are common with Multiple Sclerosis. I hope this is helps answer a lot of the questions you may have or your family and friends.

Please follow this link and see all the symptoms that are common with MS.

http://www.mult-sclerosis.org/mssymptoms.html

The Spoon Theory

2011-09-28T02:20:00.000-05:00

I was diagnosed with MS back in March of 2007. I have heard references to the "Spoons" or the "The Story about the Spoons" but today was the first time I had the chance to read the "Spoon Theory". I think it is a great way to help explain how having MS feels like. I decided to share the "Spoon Theory" with you.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Part 2 to "Medications and Interactions" Update

2011-06-18T14:57:00.000-05:00

I wanted to UPDATE to you regarding my last Blog "Medications and Interactions"

I went in and had my E.K.G. done the day after I wrote the first article. I found out last Saturday, that the E.K.G. Came back showing an abnormality. I have to go through a 6 hours testing process this Tuesday to try to figure out what is causing or where the problem is. The Exact wording was... An Abnormality of the transit Time of Electrical Impulses Across the Heart. Then it was followed with... You are to stay calm, avoid stress and stressful activities, Relax and try to lay down as much as possible. We don't want you standing for long periods of time either, until we go further with the testing.

How do you tell someone this and then expect them to not get stressed, the anxieties, emotional, etc...? Maybe it is just me, but I apparently am not doing so well on the restrictions... I have had a few people recommend going after my Doctor who screwed up with the two medications. What good is that going to do? At this minute all I care about is figuring out why and how to fix the problem. I would be lying if I said that I wasn't scared to death. I mean really, with having MS, Chron's, and Fibro... I am not one of those "LUCKY" kind of person.

The first few days I was scared and cried a lot. Then I had a day or two that, I was pretty calm, and then everyday that I have gotten closer to This Tuesday the anxiety has become worse and worse. I guess, I just wanted to UPDATE you and STRESS the IMPORTANCE AGAIN ~~ To Research and Triple Check for interactions of the Medications You Are On or A Loved One Is On. We trust our Doctors and I have watched them plug in new medications to see if it is flagged for possible complications or interactions and none were flagged. The few that have been flagged the Doctor's changed the medication they were going to use. I don't know how exactly this was missed or overlooked, but it was missed by many Doctors and Pharmacists.

I think I have come to the conclusion that we, with MS or any disease, know that we are on a lot of medications. We hope that they will help treat the disease, the symptoms, the pain, FIX US... But if we all stop and think about it, anytime we are on medications, whether it is 1 or 15, for long periods of time. There is always chances for problems to arise. That is something we all have to live with, but not something we think about when all we want, is to feel better or get better. I will update again, after I find out more, because I hope this can help at least 1 person but mostly to keep us all aware of the complications and interactions from medicines we take.

Medications and Interactions

2011-06-10T14:35:00.001-05:00

Wow! It has been a long time since I have posted.. I hope to change that and post more frequently as I have a lot to say..

Medications and Interactions

I recently had a HUGE eye - opener...OK VERY BIG SCARE!! We MS'ers, along with many other people with diseases and illness. Are treated by different Doctors and plenty of medications. We trust our Doctors, our Pharmacists and our own checking and investigating of the medicines we are on.

However, I was on Xanax for probably about 10 years (way before being diagnosed) for horrible anxiety attacks. About 7 years ago I had complained of having Burning and prickling sensations (Which by the way, was the beginning of about 13 more symptoms from my first major exacerbation). My Doctor, Primary Care Physician (PCP) added Klonopin to my medications. As the years progressed and so did my MS and Fibro, she upped my dosage of Klonopin to 1 in the A.M., 1 in the Afternoon, and 2 at night. I also was allowed to continue the Xanax on a as needed basis up to 1 3 times a day. Because of how the scripts were written it did not sound off any alarms to the Doctors and Pharmacy.

The last few months, ok 6 months have been very stressful and the pain I have in my legs had really become very severe. A new medication had been added to my full tray of daily medications, to help with the pain. Norco was added for the severe pains by my Neurologist but because it wasn't enough, I was sent to a Pain Management Doctor. Probably the best thing that I could have ever done. She quickly started a new medicine that really started helping me more than most of all the meds I had been on for years. When you go to a Pain Management Dr. (PMD) they go through all of your meds and try to reconfigure but also try to get you on the meds to treat the symptoms and also start to introduce new things like physical therapy, massage, etc... While researching the long list of my medications she realized the Deadly Combo... In her words " Instant Death". What??? I have been on these for a very long time. A bottle of Xanax usually lasted me a year, I tried not using them too often. However in the last 6 months, I have been using them regularly. She said.. "The combination of the Klonopin and Xanax together could have caused INSTANT DEATH and adding the Norco's with this combo really could have done this". She said, that if you were going to use the Xanax, that I had to choose not to take the Klonopin. "ONE or the other". I was never told this...And this never rang any alarms to the Pharmacy or Doctors... Because the wording said "AS NEEDED ~ take 1 three times a day".

How scary is that... I had to go have a E.K.G. to check for any inconsistencies. But that we will never know if there is any permanent damage done. Of course, she told me to stop the Xanax and not to take it any more... I also had to cut back on 2 other medications... So, besides being scared and angry. I am sick to my stomach, going through withdrawal. Shaky, nauseated, heart racing... Wow, this is fun!

I am sharing this story with you, not because I want you to know what meds I am on, or to laugh at my withdrawal craziness. I consider myself very lucky. I am hoping you will take this story and take a look at all your medications. Research, Call your Pharmacists, your Doctor's, etc.. and Learn about any INTERACTIONS there may be. Be Aware of what can happen and be your own Advocate. Tell this to other people so that they never find out before it is too late.
Link to Drug Interaction Checker:
Drug interations

MSunderstood

2011-02-10T13:38:00.015-06:00

I talk to so many Fellow MS'ers everyday and I listen to what each has to say. Life with Multiple Sclerosis is a Day to Day battle. Some days may be better then others but even on those days we have pain and still carry Guilt and Depression everyday.

We carry our own guilty feeling and battle our own depression every hour of every day, but we also carry the guilt and depression brought on by our loved ones. There are some that have very understanding loved ones, but even they will slip at some time with a comment or two. Here are some of the most major MISCONCEPTIONS and random quotes from some of the people I have talked to and I have faced myself. I want to add some clarity to those misconceptions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I want to start with a quote from a friend I just met with Multiple Sclerosis.

" Tara, How do you do it? I survived Cancer and then a few years later I was diagnosed with Multiple sclerosis. The battle with Cancer was a walk in the park compared to Multiple Sclerosis".

I couldn't believe I just heard her say that. Here as soon as I heard the words Cancer I felt guilty myself and was thinking "Wow, there are people with diseases worse then me and I felt ashamed and guilty, but wait..."fighting Cancer was a walk in the park compared to Multiple Sclerosis"??? She then went on to say, "I am a quadriplegic now because of the MS".

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"You are Just LAZY" - Can you believe that people would just blatantly make that comment? Well don't be. I was stunned that some people hear those words from their Friends and Family. While others hear the same comments but not so harsh. For instance, " Your home all day while I work and then I have to take care of everything here at the house. I wish I could just lay around for a day or two".

Answer : There is nothing we want more than to be able to get up and clean the house, go outside and play with the kids or spend more time with the family. We feel guilty and depressed about what we can or can not do. There is not one of us MS'ers that said "when I grow up I want to be sick with a disease that would change and drastically affect the rest of our lives. When you see someone with Cancer, or a person with an amputated leg. You would never think to make that comment. So why is it OK to say it to someone with Multiple Sclerosis?

"You never come out anymore so I just stopped inviting you". "We can never make plans because you never know how you are going to feel"

Answer - In our heads, we would love to make plans to do something. It gives us something to look forward to. In reality, we know that by making the plans there is a GREAT possibility that we will have to cancel or we are symptomatic and would make those plans miserable. There are so many of us that have lost friends especially due to this situation and some even have lost family members. If only there was a way for Non MS'ers to feel what we go through all day and night, I think Non MS'ers would understand.

"Maybe if you would exercise more and get out of that chair or bed, then you would feel better"

Answer - Well, No Shit Sherlock.... (Sorry for the language) Isn't that the case for anyone? You don't think we have that go through our heads every minute of everyday. When you (Non MS'er) complain that you have to go mow the grass or go play catch with our kids. We would do anything to take your place. That of course isn't possible. And on the off chance that we are having a good day, we do go for that walk, or try to clean, or do something active. We know that we are going to suffer for it later that night or even the next few days. I am one that does whatever I can fit into a day on my "Good Days". To me it is worth having to suffer the consequences for a few days.

One of my favorite's "But You Look So Good".

Answer - Thank You and of course "I look good" our symptoms, for the most part are all internal and unseen in other's eyes. This is where, in my opinion, that Educating people about MS would be wonderful. You can't see most of our symptoms and either can we. One example is the "Pins and Needles" sensation that most of us feel. It's not like we have pins and needles sticking out of our skin... It is weird to explain and I am not a doctor. The best way to describe it is like there is an imaginary person rolling cactus's up and down our body every few minutes constantly. There is a whole scientific definition as to what is going on and how to explain what the reason is behind this, but my point is to say it in laymen terms so it makes it easier to understand.

**HINT**~ If you ever meet someone with MS, Fibromyalgia, and many other diseases. Don't ever say "But you Look So Good". It is the most dreaded words to hear out of someone. Personally, I just cringe and want to punch the person in the gut and let them react as anyone would in pain.... But because we don't see the pain, say to them..."Oh, But you look so good" and walk away.

Making the comments of..."I know someone else with MS and they don't have the same issues as you. Why can't the Doctor's fix you and give you medications to make you feel better"?

Answer - First of all there are different types of Multiple Sclerosis. There are also some that are more aggressive or symptomatic than others.

I think that when someone with MS,Fibromyalgia, or any other disease is diagnosed, Family and Friends should have to take an obstacle course, that would make them feel what we feel (Physically and Mentally. I am not saying this in a mean or vindictive way. I just truly believe in my heart, that then and only then will people understand us better and only then, will anyone understand even the slightest, what living with a disease or handicap/disability is like. I could go on and on with more MSunderstandings but it all boils back to the same answer. "You will never get it, until or unless you get it"

***The best thing a "loved one" can do is learn, educate yourself, and listen. By learning about the disease, it will help with the MSunderstandings and keep good relationships with your loved ones.

MS and Marijuana. Does it Help or Not? Part 2

2011-01-25T12:26:00.001-06:00

Please Click the Title Name Above.
It will Direct you to the Article "MS and Marijuana. Does it Help or Not? Part 2

Marijuana.. Does it Help or Not

2011-01-19T12:46:00.005-06:00

CLICK THE (LINK) TITLE NAME ABOVE

How an Animal Can Affect Your Life Forever

2011-01-06T13:36:00.002-06:00

To My Baby "SHEBA"
I, not long after having a baby and getting married, had the desire to have a dog. I am an impulse person... Need I say more?In 1992 we saw an add in the paper just saying that a farmer's dog had puppies and was selling them for $50.00. We drove out there to see the puppies. All I knew was that the Mom was a Golden Retriever and Dad was a Labrador Retriever. Mom had a big liter and I think there were 3 left. 2 really playful and out going and cute and so tiny and 1 that looked to be about 4 or 5 months old. Come to find out she was the biggest of the liter and nobody would take her because she was so big.

So, that is who I focused my eyes on and chose to take home. She was big and fluffy haired and dark black. She was my baby... She was there for me for 14 years. Through 3 houses, 2 more babies born, my sick son's, when I was tired, sick, alone in the house, etc... She grew over the years and ended up being 110 pounds and the height of a kitchen table. My daughter would ride on her back when they were both younger. The Vet had told me that Sheba is so big but reminded me of the fact that she probably would not expect more than 8 or 9 years. Apparently the size of a dog matters on life.

In 2006, I became sick. I was so busy with life and my new job as a Realtor that I didn't take the time to go see a Doctor. As the year went on, I became sicker and more symptoms. Sleeping 18-20 hours, struggling to walk, in so much pain. Sheba would spend all day and night by my side. The Arthritis in Sheba had gotten so bad that she could no longer go up the stairs to my room. In late 2007 after being Diagnosed with Multiple Sclerosis and Fibromyalgia, I had an MS exacerbation. I was stuck on the couch bed down stairs for a little over a month. Sheba was in heaven. She slept next to me every night. I finally started feeling better and decided it was time to go back upstairs to my bedroom.

There, was a really bad storm that night. The very first night back in my bedroom. Sheba was always terrified of storms. It never dawned on me, all I could think of was sleeping in my comfy bed. All Sheba could think of was sleeping next to me. Sheba climbed the 13 stairs and lost her balance.she fell all the way down. I went running to her, and saw that she was not able to walk. I think she broke her hip. Anyways, I wasn't strong enough to move her so we made a bed right at the bottom of the stairs. I stayed with her, crying and apologizing to her. I had gotten up a few times and she would try to follow. I would lay back down with her... thinking.

I had asked my, at the time, best and longest friend, "How will I know when it is Sheba's time? What are the chances she will just fall asleep and never wake up? She always said... Tara, you will know when the time comes. I prayed all night that she would just go to sleep. I looked her in the eyes, and she put her paw on my leg and I could see it in her eyes. It was time. We took her to the vet and.....

My baby "Sheba" and I laid together. Her head in my hands and our noses touching as she fell asleep. As sad as this day, month, year, 4 years has been. I made a promise to her when that Vet told me years earlier.. "Sheba, you have stood by me every moment and been there for me when I have needed you. I will do the same for you. I miss Sheba terribly, but deep inside, I kept my promise to her as Dogs tend to promise their owners from day one.

R.I.P. Sheba 08/07

Attacking the Aftermath from all the Holidays and also organizing life. Especially when there are a lot of Flare Ups going on

2011-01-05T14:57:00.004-06:00

~

The Holidays are over!

Holidays/Vacations bring on good & bad stress. Good stress can be just as hard on us as bad stress's. I, like quite a few of you, have been fighting the MS and Flu's since Christmas. All the Chaos and build up needs to start being tackled. I strongly believe in baby steps and being proud of what you accomplish each day. I have chosen 1 thing to tackle a day. I am reaching that goal. Reaching that goal makes me feel part of this family and able to have some control but also achievement.

Yesterday for instance - I knew I wasn't going to be able to do physical stuff but I had to fill out the packet for Disability.. So, I did it and had my daughter mail it. -Completed Task

Today - Tackled dishes, and organized papers and bills sitting around everywhere. Can't afford to pay them but I now have them all together and ready to go. - Task Completed

These tasks are by no means HUGE but they have to get done and by doing each one of these, it is slowly organizing and cleaning out areas but also organizing my brain a little.

Besides the Holidays just ending, we are getting deeper into the Winter "wintertime blues", tax time, cleaning, hobbies,weight loss plans, all the New Year Resolutions that we already probably have stopped, etc... we still have a lot on our plates.

Keep an open mind and break things down to ONE thing at a time (Baby Steps)
Depending on the day and how you feel, hit the harder tasks on the good days and not so hard on the worse days.

~~Be PROUD of each accomplishment.~~

HINTS Tips and tricks...

*Use a journal to keep track of what you need to do and how/when you will attack that goal. When you have completed it.... mark it off the list. - sometimes just seeing it marked off, makes you feel achieved. (If it is a big goal, break it down into steps)

*If cognitive is an issue, use a voice recorder or a calendar

*I tend to break dishes every time I wash them.... TRICK - I bought Gardening gloves that had nubbies on the fingertips. It allows me to grasp better and not drop them.

*Putting Away Christmas Decor.. Get rid of the old stuff that you never use. Take it to Goodwill or Amvets. We all have one or two of those boxes we bring up every year to decorate and we never use that same stuff. Let someone else use it and enjoy it and that empties an area out of your home. (And it is a write off for your taxes)

*Did I mention Tax time???? - For a lot of us, that alone brings on stress. Start putting stuff together in one binder or folder. For some of us, it means tax rebates - Work fast to get your stuff together and taxes done as early as you can. The sooner you turn them in, the faster you get your money. For those of us that have to pay our taxes...... Take a break, we have til April 15.. LOL

I can't STRESS it enough...... BABY STEPS!!!! We can all do this and we will all make it through this

Find your strength..Life Goes On!!!!!

2010-10-13T20:38:00.001-05:00

Last week was crazy! I started the week with 2 doctor appointments. 1 with my neuro and 1 with my regular Doctor. By the time I left the Neuro, I was scheduled to see 5 other Doctors and a boat load of testing. He said I have progressed to the point that he feels I am Primary Progressive. He is waiting for the testing to confirm it. I had to see an ENT only to find that I am losing my hearing to a pretty good degree and that my eardrums were almost flat lined. So, of course he wants further types of MRI and MRA to rule out a tumor on the carotid artery that would cause the hearing loss, but he also said that MS can cause this as well. Come to find out, it runs in my family... Not sure what this means for me but if they find their is a tumor on the Carotid artery that would mean less blood flow, which would have to be surgically treated. So my question would be, is this what the CCSVI is all about and would I be able to get it since they are doing it for hearing loss. If it is the MS, then I guess that will just be something I have to live with. by the time the appointments were over for the week (I have a whole calendar filled of further appointments) I didn't think I could handle any more. I was so worn out.

But Thursday started the Pep Rally for the High School Home Coming. Saturday was Parade, Football game and then getting both my older kids ready for homecoming. My Mom and Dad came to help and thank God they did. I forgot Randy had a Bachelor party to go to. I stayed up until 4 in the morning with the kids and all I could think about was how quickly my children have grown up. I don't think I would want to go back in time and relive it again, but I wish I could stop the clocks now. I believe I have taught my kids to be strong, respectful, and that they can do anything they put their mind to. I believe they have learned that.

I was thinking the other day that my kids will eventually leave and move on with their lives. I wish and Pray that the MS will get controlled for me enjoy these last few years of having them with me. I don't know where this is heading, but I learned something...

No matter how hard or bad wr are fighting the MS, When it comes to my kids..... I always have the strength

This Is Not The Way My Life Was Supposed To Go

2010-08-26T13:24:00.001-05:00

I have to admit that MS can be easier to handle, cope, and accept some days, but other days it can feel like the world is caving in on you. That is where I feel I am right now. Not all of it is the MS, some is the economic times but either way I look at it, it still falls back on the MS.

My MS has been extremely active this year. I have not had any recent MRI's to see if it is progressing or more permanent damage done, but my life has been extremely affected because I haven't had too much down time. Down time is kind of a funny way to say it, because what I mean is not many good days. Because of this I am not working, and we are trying to raise a family of 5 on just my husband's income. I know a lot of people are having to do the same thing because of the economy. There is a difference though. Besides the normal bills, car payments, rent/ house payment, groceries,clothes for the kids and their needs,school fees and school related stuff..We also have to pay for loads of medications, shots, more doctors visits (actually a lot) and special needs equiptment.

I realize that jobs are far and few right now, but because of my issues, I feel as though I am not pulling my weight. I did for many years. I find myself saying a lot more now, "THIS IS NOT THE WAY MY LIFE WAS SUPPOSED TO GO". Now if I looked at it from the religous stand point, then yes, apparently this is what God wanted for me. But how can that be? I can't imagine God wanting something bad for me. Which leads me to believe that I am supposed to be learning something from this or maybe a punishment for something in my past that I don't know I did. If I look at it from my stand point, I stick with my view of "This was not the life I was supposed to have". I was active, I took care of the cooking, cleaning, the kids, the bills, the homework, the groceries, the yard and ponds. Not because I had to, but because I loved doing it. I have a wonderful husband that would have done it but I chose to do it all. Along with all of that: I was very active with the community and neighborhood watch captain, active with the schools and PTA, was always worrying and trying to save the world in anyway I could. Some people claim that Multiple Sclerosis is most found in people with Type A personalities. I guess, in my case that is true. I was always told to stop worrying about others so much and worrying about the what if's.... If I didn't have something to worry about, I would borrow other people's worries. My Mom and I used to joke about that all the time.

Now, as I sit here, I wish I would have listened. maybe I wouldn't be in this postion. No matter how hard I have tried, I still can't stop worrying about stuff. I worry more about my family but still spend a lot of time worrying about others. I guess that is just me. I don't think that will ever change. I always have to figure out the WHY???? So, I have come to the conclusion that this diagnosis was not a punishment, it is now something that I have to learn to deal and cope with so I can help other's with MS in some way or another.

I worry about our bills, groceries, utilities and so on, but as funny as it is, you would think we would qualify for assistance somewhere somehow, but we don't. We are always $40.00 - $60.00 over to qualify for any assistance. I have no clue how they figure that out. It is very hard for me to ask for help or even accept help, because I am usually the one always helping others. And when I really do need it we don't qualify. I don't know where this road/journey is going to take us or how we are going to survive it, but deep down I know we will. We have to... Our kids depend on us and I will make it work... As I say this, I laugh because I have no idea how this is going to work but I will figure it out.

I carry a lot of guilt daily for putting my family in this situation. If I wouldn't have gotten this disease, my family would't be suffering the consequenses of it. My kids would have their Mom around more for them, not sleeping because of the severe fatigue. I would be working and being able to pay the bills, hopefully. I would be taking care of all the things I used to.

My Dream:
Since I spend a lot of time laying down, I have nothing to do but think. I think of all the things I wish I could do but most of all, I think about how I can help my fellow MS'ers. I have come to the conclusion that if I had it my way... I would be out helping the Newly diagnosed and their families. I would help them understand, prepare, but encourage them to fight this disease. I would help their families understand MS and help teach them how they can be supportive to their loved one. I would open a donation drive of clothes, food, meds, money and so on to help those families when they hit rough times. So they are not having to chose between Medicines and groceries, or clothes for their children and school supplies vs. utility bill. While doing this I would push for more information about this disease. There are over 200,000 Americans diagnosed with MS and many more each day being diagnosed. The average age used to be between early twenties- mid thirties and majority being women. Boy how that has changed. They are finding yound children even toddlers with it and a lot more men being diagnosed along with older ages. And yet, if you ask people (the public) about MS most don't know much at all. The surprising part is that those same people that don't know much at all will admit that they know of at least one person with it. I agree that money should be going to research for MS. I also believe that the cure is out there and when they find it, that will be a huge breakthrough for hundreds of other Autoimmune Diseases. But until then, countless numbers of lives have been lost (due to complications of MS) and quality of lives affected.

Until then, I will be trying my hardest to achieve MY DREAM along with trying to survive the economy and times. I truly believe fellow MS'ers believe and would agree that this is not the way "our" lives were supposed to go.

LDN Update and CCSVI

2010-08-20T15:36:00.000-05:00

As I wrote about awhile ago about Low dose Naltrexone (LDN), I was telling about what I have seen in improvements and no- improvements.

I always have to remind people that when I started LDN, I was looking for huge improvements with the MS and Fibromyalgia. I also was hoping for changes with the Chron's. I have been on LDN now for a little over 3 months. I have found that I am stuck at 3.0mg. When I up the dosage things seem to start declining again. I am shocked that the LDN at this level has helped the Chron's and minor changes have occured with the MS and Fibro. I don't know if I should call them minor, I think I would say that LDN has helped those disease symptoms, just not the symptoms I was thinking they would help with. The changes/ improvements have been enough that I have no intentions of stopping the LDN. I also feel strongly enough to say that I wish I knew about this treatment 4 years ago. I feel that if I would have started with it, I probably would not have the permanent damage that has already taken place. If and when someone newly diagnosed comes to me, I will tell them to look into this treatment.

The hardest part, is that when you are first diagnosed with a disease, you feel like your life is in the hands of the Doctor. You trust that they are doing everything they can to treat you to the best of their ability. I disagree. You have to be your own advocate. You and your doctor must work as a team. Don't ever be afraid to question them or bring new ideas to the table. If you feel that you are not being being listened to or getting answers to the questions you have, then it is time to find a doctor that is right for you. I am in a situation that my insurace tells me where to go. I have the best Neuro at the clinic but we do not see things eye to eye. Not many Doctors/ Neuro's will prescribe LDN at this time. They claim that it is not approved by the FDA so they don't feel it works. Well, maybe they are right for some people but when you have a disease like MS, there isn't many treatment options. My Neuro seems to think the only treatment is Steroids and then medications to treat all the symptoms. My suggestion to my Fellow MS'ers is to research and learn what all there is out there and decide what you feel is right for you. Sometimes doctors will say No and they will have a good reason that will make you change your mind. If not then go with your gut.

CCSVI is the big rave right now. I am learning what I can about it. I had an open discussion with Fellow MS'ers on Facebook the other day. Wow, it is a heated topic and many opinions. I don't really know where I stand on this procedure. I do think that there is proof that it does help some patients. It is too early to tell what the end result is for them. At the moment they are doing great and seeing a huge difference in their lives. A stent and/or angioplasty makes me wonder if they will need to keep repeating this procedure throughout their life. It may be worth it if it gives them a better quality of life. The discussion became very heated, which leads me to believe that there is more studies and research to be done.

What I have gotten out of everything is that this has been a great year in advancements towards finding either a cure or better treatments for us. And that in itself is great news.

Low Dose Naltrxone Updates

2010-06-29T14:18:00.000-05:00

LDN- Updates at 2.5 weeks and at 6 weeks

I am asked daily by my friends how I am doing on the LDN and what changes I am seeing. So,I decided to write, now that I have been on it for 2.5 weeks. Before I do, I want to thank everyone for supporting me and helping me get all the information I needed and still am looking for.

2.5 WEEKS
Before I started LDN, wow 2.5 weeks ago. I was in a 10 week major flare up. This flare up caused me to go through 2 rounds of steroids only to continue to get worse. I was to the point of almost going into a wheelchair. I was in so much pain from all the spasms and joint pains, besides the MS the attack kicked in my Fibro along with the chron's. so, basically I was very miserable and crying constantly. I guess, now I will admit that I was hating life and at a point that if I was going to continue like this... I don't think I wanted to continue nor did I think I had the eenergy to fight through this attack.
(wow, tears already are filling up in my eyes)

During the massive attack, I met so many more wonderful friends here on Facebook, that taught me about a drug called Low Dose Naltrexone (L.D.N.). I listened to them and started to research the best I could as the MS had really messed with my comprehension. I went to my Neuro and he said he wouldn't prescribe it because it was not approved by the F.D.A. and in the last 20 something years he prescribed it one time to a patient and that patient felt so well, that he stopped all his MS shots and he got worse, so my Neuro would never prescribe it again. I went to my G.P. who basically said she didn't know much about it and because it was an Opiod drug that I needed to see a Psych Doc because they are usually the ones that prescribe that. So, of course, I was getting worse and none of my Doc's would do something, or should I say try something that I felt might really help me. What could it hurt to try?

Now here I am 2.5 weeks later...
I am sitting here typing this with a smile on my face. I am able to walk just fine without any walking device. My muscle spasms are still present but not nearly as bad as they were. I even have times that I see the rolling spasm and feel nothing. My pain level which was normally between an 8-12 on a scale of 1-10, is now probably between a 2-6. Which is wonderful. I really can't say that I see new things daily but I look back over a few days or a week and that is when I really can tell all the changes. I no longer am woken up 2-4 times throughout the night because of the pains. Now, I sleep good throughout the night and when I wake up (on my own) the pain is there, but the pain is not waking me up. That makes a big difference. I still need to take all my meds in the morning and after they kick in, I feel better and can go on with my day. My friends have said that I havelost the dark circles under my eyes and the pale color and now I have life back in my face. they are shocked to see me glide through the house, like nothing, just to get a towel for my son. Yes, I fell 1 time about a week ago and it was for no other reason then me rushing too fast through the house. It is hard to tell the difference between the pains of MS and Fibro sometimes because they usuallyare together and I am so used to it. But I believe the L.D.N. is working well with both of those diseases. I am still not at the normal dose, so I am hoping that in time, it will start to work on the Chron's as well. I have read that I need to get closer to 4.0-4.5mg for it to help with that. I may not get to that level because I normally have such horrible spasms, from what I have read, the closer I get to 4.0-4.5mg it may make the spasms get worse. So, we will have to wait and see.

Within 3 days of starting the L.D.N. I was out in the garden planting. which is something that I haven't done in over 4 years and was always one of my favorite things to do. I have spent a lot of time outside, of course until we hit the 90 degree weather earlier this week. During those days, I did laundry, dishes, organized some ofr the rooms in our home, did a bunch of paperwork, and a lot more.

I have learned that L.D.N. works so well and so fast that it is hard not to just take off and do as much as you possibly can. For people that might read this that don't have a condition like this or these. When you live your life on a day to day basis, never knowing what each day will bring you? Or what you will and will not be able to do. And all of a sudden you feel like you did before being diagnosed (it's been so long, that I really don't remember what that felt like) You don't want the feeling to end and you are so afraid that it will be gone the next day. So you take advntage of it and you overdo it. Only to find the next day and the day after that you still feel good. It is a hard adjustment. It is something I have to be reminded of often... Don't overdo it. I still have symptoms I deal with daily and have all hopes that in time they too will diminish some or all the way. I look forward to seeing where the L.D.N. will lead me and so many other people with Autoimmune diseases.

While on the subject, I learned that not only does it help with all the diseases that I have listed many many times. I learned that they are now saying that L.D.N. has helped with infertility. Wow, that is amazing for all the couples in the world that would like to have children and were told they couldn't. Maybe L.D.N. will help them as well.

6 WEEKS
Over the last 3 weeks I have had a lot of stress in my life. Our family lost one of our best friends. We were very devastated. 4 days after his funeral we had to prepare for a family reunion that we haven't seen in over 10 years and we were driving. My schedule was very screwed up. There was good and bad stress during that time. I also had the flu during this time.

Needless to say, I have learned that STRESS can and will overpower the LDN. About a week ago things were back to normal, meaning we were home and trying to get back on routine. The heat has been very hard to deal with and we have had storms almost daily. I would have to say that I have not seen so much help or improvement from the LDN during this time. I started having really bad prickly sensations and pretty severe leg pains again. I do have to remind everyone that I am not just dealing with MS. I also have Fibro and a rarer form of Chron's. The LDN, I can tell is working but I can't point my finger as to what it is doing. I know I would be much worse without the LDN. I did go to see my General Practioner who manipulated my meds for the Fibro and so the prickly sensations are slowly fading. As for the severe Fatigue, I have No clue. I have a call into the Neuro to see if he has any suggestions on that and also the leg pains.

To sum this up. My feelings on the Low Dose Naltrexone is...
Depending on the diseases you are treating. With Multiple Sclerosis and Fibromyalgia, at first, there are very good chances that there will be significant changes immediatley. However, then it starts working on things inside of you that is needed but not so noticeable. LDN is something that has to be continuous and takes time sometimes just a few weeks and sometimes months. I have noticed things like my hair and nails are growing and looking better, the rings under my eyes are gone, I feel like I have life in me. But at the same time I still have these diseases and LDN can not take that away. If I hadn't had the stresses over the last 3-4 weeks I do feel I would still be on a roll as I was before the incidences. I will continue to update on how I am doing as some of the stressors are going away.

Low Dose Naltrexone and Autoimmune Diseases

2010-06-26T00:51:00.000-05:00

I was diagnosed with Multiple Sclerosis in March of 2007. I also have Fibromyalgia and a rare forms of Chron's. When you are first diagnosed with Multiple Sclerosis, you are not given a lot of information. Basically you are told just a few basics and then told or talk to about what type of MS Shots you will be taking. A very big misconception is that, the general public believe you can be treated for MS. When actually there is no cure for MS. The shots are to help protect future permanent damage and some shots also help repair the mylein sheath, that protects your nerves. As for all the symptoms, the Doctor's only can try to give medications to alleviate the symptoms but a lot do not help. Also there are so many symptoms and to different severities.

Over the last few months I have learned about a treatment that has been around since the 80's but hasn't been approved by the FDA. The speculation is that the medication would take so much money away from the Pharmaceutical Companies. There probably are other factors, however, this is the main reason. LOW DOSE NALTREXONE (LDN) has been around since the 1980's and has been proven to be very helpful for many Autoimmune Diseases and other diseases.. It is amazing to me how many autoimmune diseases there are. What is even more amazing is how LDN has improved so many diseases. Autoimmune diseases, Cancer's, even Endometriosis. With all the good things that have been proven from the use of LDN the Government along with the Pharmaceutical Companies and most Doctor's will not prescribe it nor will they push for further testing of this drug. Luckily, LDN can be purchased without a prescription. I do believe that when you have a disease that it is important to work closely with all of your doctor's. There are times that your Doctor's don't seem to look into other alternatives. They will just continue to push more and more drugs to work on the symptoms. I was turned down by my Neurologist to prescribe LDN. I did chose to purchase it and give it a try. I figured that anything is worth a shot. Sometimes I believe that you have to trust your gut instinct and try other therapies if you research and feel strongly about trying something different.

I started LDN almost 2 months ago. I have noticed changes in all three diseases. I have talked to other fellow MS'ers that have had quicker responses due to only having to fight one disease. There are very minimal side effects from LDN. Basically they consist of possibly Vivid Dreams and Trouble Falling asleep. those are the most common side effects. they have also shown that it is safe for children as well as adults.

LDN is made from an opioid blocker. If you chose to try LDN, you can not be on any strong pain killers. Examples.. Vicodin, Morphine, Percocet as the LDN will only work to fight the effects of those drugs. LDN is compatible with most MS medications and treatments. It was believed that LDN could only be used with Copaxone, however Dr. Bernard Bihari ( the founder) has done enough studies showing that LDN was compatible with all the CRAB shots including Tysabri. Again most doctor's will disagree with this. If you think about how much money we spend monthly on all of our medications for our diseases and to know that there is a treatment that over time would eliminate many of the medications. Then you will understand why the FDA won't approve it and why the pharmaceutical companies will not spend time testing it. Sad but True.

In my own opinion, I feel that everyone that is diagnosed with an autoimmune disease along with any of these other diseases. LDN Should be the very first treatment started before being put onto all of the other drugs. In this article, I was not and am not going to get into my use with LDN. I will say that I noticed GREAT changes immediately. I hope to continue to see more changes as time goes on.

We all must remember that there is NO cure for MS. So, LDN, in no way is a cure but comes very close to making you feel as though you are cured. I think the only downfall is that you feel so much better on LDN right away that it feels as though you have regained a bunch of lost years of pain and sickness. There are very quick and fast responses but at the same time there are so many issues inside your brain and body and your cells that are being fixed that you do not always notice a big change everyday. After a few days or at the end of each week you will look back and notice all the changes that occurred that you didn't notice each day.

In my next few blogs, I will give more information on how to take the LDN, when to take the LDN, how to approach your Doctor's to try to get them on board, etc... feel free to send me messages if you have more questions.

LDN Research Trust : LDN Research Trust

2010-05-18T21:43:00.001-05:00

LDN Research Trust : LDN Research Trust

This is a Wonderful link about LDN. It has lots of great information on this site. I started taking LDN a week ago today and am having positive results. I will be posting a blog diary shortly along with a lot more information on it.

Low Dose Naltrexone (LDN) - My Journey

2010-05-02T17:36:00.002-05:00

I know that when I started blogging a few years ago, I classified myself under Multiple Sclerosis only. Since being diagnosed with Multiple Sclerosis in March of 2007. I have also been diagnosed with Fibromyalgia along with Chron's. Not the typical Chron's that we all have heard about. Mine is different. It took a few years and a couple specialists to figure out the issue but apparently my large intestine is allergic to foods and waste. So to sum it up simply. Just like someone with Asthma, the esophagus swells closed. My large intestine does the same thing. Odd, I know, but I am relieved they were able to figure it out.

With that said, I am opening my blog up to all three issues.

I have been in a major flare up for almost 8 weeks now. I have had 2 steroid treatments and have had no luck. All three diseases have gone out of whack, to the point that I don't know which one is causing which issues. However, with all the steroids, I have had countless sleepless nights. I have spent a lot of time researching and learning a lot about Low Dose Naltrexone (LDN).

Low Dose Naltrexone has been around since the 1980's and has shown a lot of good results for many autoimmune diseases. I will give links here shortly as to all the massive amounts of information and all the diseases that it has shown to work on. I was very disappointed that my Neurologist turned down the idea without any good reasons at all. After talking to many people I was informed that most Doctors will not prescribe it because it has not been approved by the FDA. Mostly because it is so cheap to make and buy that so many pharmaceutical companies will lose a lot of money. So, they are not doing much to research more on it. The cost of LDN if prescribed is 30.00 a month out of pocket. Insurance does't cover it. Crazy huh? Anyways, since I was turned down, I did find a way to get it and will be starting on it once it arrives. Which will be the end of this week sometime.

I will be journaling on the side effects (which are very minimal if any, from the information I have read) I will also list the good, bad, and ugly effects that I see while on this. I have very high hopes and with luck will help with all three autoimmune diseases.

Hopefully if there are improvements, more people will push and fight for this treatment. Of course, I will always have all three diseases, and by no means is this a cure but in the information I have read... This is the closest thing we have. I will keep you all posted on how this goes. Along with posting links for you to read and learn more about Low Dose Naltrexone.

These are some of the Diseases that they have found LDN to be helpful for. But Refer to the links provided to find more information out and how it has helped.

Low Dose Naltrexone

FDA-approved naltrexone, in a low dose, can boost the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.

ALS (Lou Gehrig's Disease)
Alzheimer's Disease
Ankylosing Spondylitis
Autism Spectrum Disorders
Behcet's Disease
Celiac Disease
Chronic Fatigue Syndrome
CREST syndrome
Crohn's Disease
Emphysema (COPD)
Endometriosis
Fibromyalgia
HIV/AIDS
Irritable Bowel Syndrome (IBS)
Multiple Sclerosis (MS)
Parkinson's Disease
Pemphigoid
Primary Lateral Sclerosis (PLS)
Psoriasis
Rheumatoid Arthritis
Sarcoidosis
Scleroderma
Stiff Person Syndrome (SPS)
Systemic Lupus (SLE)
Transverse Myelitis
Ulcerative Colitis
Wegener's Granulomatosis

Other Diseases:
Cancers:
Bladder Cancer
Breast Cancer
Carcinoid
Colon & Rectal Cancer
Glioblastoma
Liver Cancer
Lung Cancer (Non-Small Cell)
Lymphocytic Leukemia (chronic)
Lymphoma (Hodgkin's and Non-Hodgkin's)
Malignant Melanoma
Multiple Myeloma
Neuroblastoma
Ovarian Cancer
Pancreatic Cancer
Prostate Cancer (untreated)
Renal Cell Carcinoma
Throat Cancer
Uterine Cancer
> LDN has demonstrated efficacy in thousands of cases.

"Me Day"

2010-04-22T14:50:00.003-05:00

When my Daughter was younger, we came up with, "ME DAY". "ME Day" was our code word for telling each other we needed some time alone. When we came up with that term, She had her Daddy, 2 brothers, kids that I babysat for, along with all the neighborhood kids. Yup, it was crazy busy in our little teenie tiny home. Looking back now, I wouldn't have traded it for the world.

It seems like yesterday but at the same time a history ago. It was back in a time of my life that I could take on the world. I was always busy doing something or worrying about something/someone. I was a Wife, Mom, Babysitter, Neighborhood Watch Captain, the "Martha Stewart" of the neighborhood, the Gardner, the Cleaner, the one that took care of all the bills/appointments/school functions, etc... It wasn't that I had to be, it just is who I was. Yes, life was crazy, but I made it that way.

Then it was time for a change. The neighborhood had changed and things were starting to happen. My kids were affected and we needed to move. Due to the fact that all 3 of my kids had had medical conditions that had cost us a fortune, we didn't know how to move because we probably weren't going to get approved to buy a house at that time. One of my best friends told us about a property they owned in a town not too far from where we currently lived. It was a Farm home surrounded by woods and farm land. She had said we could rent from them and move there. We put our house up for sale and never thought it would sell in 3 days. Here we go, rushing and hurrying to move in to the Farm house. Funny thing is... For as much of a control freak as I am, we moved there and I had never seen the inside of it....

Boy was I shocked, the house was really run down at the time. The people that had lived there previously destroyed it. I was terrified on how this was going to work. I was kicking myself, overwhelmed and just in awe of where to start. My best friend was now my Landlord, that was weird... However, between her and her Sister hiring people to work on the outside we scurried to get the inside cleaned and fixed. We weren't going for perfect, just livable. The funny thing for me, is I remember a few days into moving in, the kids already had started going to the new schools and I grabbed a cup of coffee and went out side. The Sun was barely up and it was super quiet. Almost too quiet. You know, the kind of quiet that makes you nervous, because it is too quiet. Especially moving from a huge city to very small town farm house. Anyways, the noise shook me. Out of nowhere I heard a bunch of MOO'S. Not just a single moo but a herd of moo's. I couldn't see them but I could hear them. I thought it was the funniest thing ever. That was almost 7 years ago.

Seven years ago my Daughter was just going into 5th grade, 1 son was starting 2nd grade, and my youngest was in preschool 3 days a week for just a few hours. Now... My Daughter is just finishing up her Junior year and going to be a Senior in High School, my son is ending Junior High and going to be a Freshman, and my youngest son is finishing up 4th grade. I can't believe it. We still live in the same house and can't imagine living anywhere else. During the seven years of living here, actually a little over 3 years ago, I was diagnosed with MS. Since then Fibromyalgia and Chron's. My life has changed so much from what I was used to. This blog however, is not going to be about that. It just shows how life changes.

I decided to take a "ME Day". I have had a rough few weeks and really bad few days. Today is the first time in a week and a half that I even stepped outside. I brought my camera, the computer, a basket and my Dog and have been outside for a few hours. I can't walk very far but I have missed the beautiful Lilacs 2 years in a row now and I wanted to take advantage of this time. I cut so many beautiful smelling Lilacs and put them throughout the house. I am sitting outside and there is a breeze and all I can smell is the Lilacs. It is wonderful.

This house we live in is not just a Farm house. It is over 100 years old, it used to be an old Stage Coach Home and is just amazing. Yes, it has plaster walls, not many outlets, 1 bathroom (that just happens to be right next to the kitchen table... LOL) But it is home to us.

As I was cutting the Lilac's it dawned on me that someone over the period of time this house has been here left me a wonderful gift that comes back year after year, and then I started to laugh. Remembering when my kids would bring me every flower they could find including and mostly weeds, and were so proud to give them to me. Of course I would put them in a cup just long enough for them to forget and then toss them away. I wondered to my self, if my Mom remembers moments like that? And then I thought to myself...I wonder if now at this age would my Mom treasure those flowers that I hand picked for her, if I brought them to her now? I know I definitely would treasure those moments too. Life changes so quick.

Anyways, I am sharing a part of my "ME DAY" with you!
I have a lot of blogging to do and it will be a lot of mixed emotions and information... So, I am starting with this one.

MS Blues

2010-03-12T19:40:00.000-06:00

I am in the middle of an exacerbation, or at least my Doctor thinks I am. I am having horrible muscle spasms, which is not uncommon for me. However, this time it is throughout my whole body. My arms, face, hands, etc. It is common for me to have them in my legs but not to this extent. I can not feel my feet or my legs, from my thighs down. I can feel pain but at the same time very numb. Solumedrol is the only option the doctors have but I do not tolerate it and have horrible side effects from them. So, my decision to not take them is not to be a martyr, it is that the side effects are much worse then the relief.

I am so depressed at this moment. I normally am very positive and push fellow MS'ers to fight this diseas and not to give up. Today, I am giving in to the sadness and anger. I live in a two story house with my bedroom upstairs. I am scared and unable to do the stairs due to the pain and numbness. I can do it, I am just scared. I have been living in my room for the last 4 days. It scares me to think that my legs are going away, or at least the ability to use them the way I always have. At the moment I hate this disease and I can't stop crying. I don't even know why??? This is not like me. I feel like I am living in a world alone. I have not been able to be apart of my family unless they come up in my room.

I think sometimes that maybe a solution is to move our bedroom downstairs. That would solve the issue of being trapped upstairs. At the same time, when I feel like this, I really don't want to be around anyone. I am not normally one to cry or be emotional, when it comes to this disease. But I have lost my inner strength. My Doctor told me a few years ago that I would most likely be in a wheel chair. Normally, I am the person that if you tell me "NO", I will prove you wrong. Yesterday my Doctor told me I should consider getting on disability. What would that do for me? I am don't feel like my life at 37 should be over, when I was only diagnosed 3 years ago. I have known people that have had this disease for years and still live normal lives. If I was at home on disability, I feel like I would have nothing left. Our family needs the money, and I need something to make me feel proud of. I love my job. I have the ability to work from home when I need to, but I love going in to work. People that come in daily don't know that I have anything wrong. I like that feeling. I feel that I am disappointing my kids, husband, parents, etc. I have always been a strong willed person and stubborn at times. I have gone through a lot of heartache and it has made me the strong person, that I have always been. I feel like I am losing that person and it scares me.

I sometimes think that using a wheelchair at times would give me some of my life back but at the same time, I feel like I would be letting my family down. The worst part of this disease is that nobody can see the pain. Since being diagnosed with MS, I have also been diagnosed with Chron's and Fibromyalgia. These are common with MS. But for me, it just doesn't seem fair. I am angry and sad and scared as to what is coming next and where this is going. Usually, I keep a smile on my face and most people don't see the pain and anger inside of me. I think people, get frustrated because I don't do all the same things and am uncapable of doing what I have always done. So, again, I disappoint them. I feel like they have no problems telling me how I disappoint them, but I don't ever say anything back. I just take it in and then, I end up where I am now. A place, where I feel that I am nothing but a disappointment to everyone but also to myself.

Everyone goes on with life and all there "problems" and I try to understand and be there to help where I can and to listen. But when it comes to me, if I say anything about what is going on with me, then instantly, it is "Tara, stop it" or "Tara, you need to just exercise more", Or "Tara, you should go see a shrink"... What is it not ok for me to be upset or angry or even sad at times??? I just wonder how these people would act if it was them in this situation??

I know, I probably shouldn't be writing this, but maybe it will help someone else that feels the same way, to know that they are not alone. Also, it helps me to get it off my chest, because it is apparent that I can't tell people how I feel. People instantly try to fix you... Or fix the problem... Hey eveyrone, You can't fix a problem like this. You can't fix me. It is what it is.. I don't like it, actually I hate it. But until you are in my position or someone else with the same situations. You will never truly understand what goes on in our bodies or our minds.

I am going to post this without rereading, because, I will just delete it... Sorry for spelling mistakes.

Life, It IsWhat It Is!!

2010-02-28T18:40:00.001-06:00

Wow, it has been a very long time since I have written in my blog. As I look back at my last post I think of all the things that have happened since then. It's kind of ironic, that what was bad then, seems like nothing now. I really had high hopes that 2010 was going to be a way better year then 2009. It is funny to think that every new year, I seem to think the same way, and then for some reason or another, it doesn't go my way. I am sitting here wondering if it is the same for everyone, or just my dumb luck.

I will rewind a bit and explain what all has gone on in the last 8 weeks. My last exacerbation started in October of 2009. I held out til November before giving in and having the I.V. steroid treatment. We all know how much I hate them. Anyways, in the very beginning of January I had to do another course of steroids. This time I chose to try the oral just because I didn't want to go through all the side effects. It seemed to have worked. I am not falling nor is my vision blurry. So, even though it did take two courses of treatment, it did get me back on track. The only symptoms I have really been fighting is the fatigue and muscle spasms. About the same time I was going through this, my son who is 14, started complaining of severe head pain and dizziness. We had taken him to the doctor's and was told to wait it out for awhile, to see if it improved. Three weeks later we ended up in the Emergency room, where they treated him with a cocktail of drugs and determined that it had been a migraine. He was fine that night with the dizziness returning the next day. We were sent to a Neurologist who ruled out any brain issues. He was not allowed to continue Wrestling though. Later we went back to the Doctor's to find that the dizziness has something to do with his pulse and blood pressure. Apparently, the more vertical he is, the heart is not able to push the blood to the brain as fast and this is causing his dizziness. We go see the Cardiologist this Wednesday. Also in January, My husband's Grandfather "Papa" passed away. Papa lived about 10 minutes away and was a huge part of our family's lives. It was and still is very difficult.

So, in a nutshell, this year has not started out the way I had hoped for, but I am still holding out hope for some good to come this year.

On a positive note. My Doctor's, who do not work together as a team but individually, did make some changes to my meds and they do seem to be helping. Apparently when you have MS, then your Neurologist handles all issues. When you have Chron's then your Gastro handles all those issues. When you have Fibromyalgia, then your regular Doctor handles those issues. Kind of odd, since they are all Autoimmune diseases. So, I was able to get some help by adding a medication for the severe spasms, caused by the MS. As for the Fibro, I was able to get rid of 2 medications and add 1, and that seems to be working very well for me. And then with the Chron's, it did take 2 doctors but they have that going good for me now too. It does cause a lot of frustration when Doctor's don't work as a team.

I figured that I would take the time to update everyone on why I haven't posted in a while. I have a lot to write about, but for now, I will focus on the current situation(s). And then I will write about some actual informative topics that I have learned about in regards to Multiple Sclerosis and Living Day to Day with MS. You know, I guess that in some odd way this current blog does sort of sum up "Living Day to Day with MS".

Living with MS Means Living with Daily Symptoms and Pains

2010-01-21T13:57:00.012-06:00

Living with Multiple Sclerosis Means Living with Daily Symptoms and Pains. It is not something we like to know and it is hard to accept at times. I have been dealing with symptoms and pains for a few years now. Some come and go as they please and some are with me everyday. The past few months have been really rough with balance and dizziness symptoms, fatigue, and the pains in my legs have become worse. I find it interesting and frustrating at the same time to know that when I called the Doctor regarding the pains in my legs. I was told that I should go to see a psychologist to get help accepting my MS.

Now some of you have gotten to know me very well over the last few years and some of you are new to learning about me. It blows my mind that someone (my Doctor) of all people would think that I haven't accepted my disease. I consider myself very accepting of the disease and the daily pains and symptoms that go with it. However, sometimes the pains are very bad and continue to stay bad or get worse and I thought maybe, by calling the Doctor, they would have some ideas to help with the symptoms. My Doctor said " you have MS you will always have symptoms and pains and it will progressivly get worse, that is MS".

I get frustrated because I take a lot of pride in accepting this disease and try to help others accept it. This same Doctor (not my Neuro, it is my G.P.) knows me well enough to know that I don't call her nor do I go visit her unless she demands it (1 time a year). So if I am at my end and am asking for help, you would think she would keep that into consideration. I want to ignore her request to go see a psychologist because acceptance is not an issue I have.

For the last few weeks my legs have hurt so bad. I sent a message asking if there was anything I could be doing because, by the time I wrote her I was in so much pain. Oh yeah, I may have mentioned that I was ready to amputate both of them to help reduce the pain. Now I know that amputation is not the answer because I would not be able to wear the cute jeans I just bought at the store but I wanted her to know how bad it was getting.

Its crazy to me how many Doctors you end up having when you are diagnosed. Then they push you to Specialized Doctors when a part of the body is getting messed up. You go to see the different Doctors, have the test run and then none of them talk to each other. So I feel like I get pushed off on to different doctors but the results dont get relayed. So you are basically having to start from scratch and explain what each Doctor tested for and what they feel should be done. Only to have the initial Doctor disagree and say NO. Isn't that why they send you to Specialists???

So I am going to sum up really quick where I stand.. When I am forced to go see the Doctor and I finally come to see them. When they ask me, "How is everything going"? I am going to say "Fine". This way I dont get shoved off on to other Doctors and waste my time. I won't be told, "deal with it...you have MS". I won't be put onto medications that may or may not be helping. If they are helping, are they only helping contradict the side effects from the other medications? I will start looking into natural products to help with the symptoms and just try to do the best I can each day.

Oh, and I have been asked by many of you how the MRI went. I only had the MRI of the brain done. There have been no changes so I am very happy with that. It does leave me questioning how it is possible to have no changes on the Brain MRI but my symptoms seem to be worsening??? HHhhmmm It is a mystery to me.

An Exacerbation that Lasts Forever.

2010-01-10T14:32:00.006-06:00

It has dawned on me that it has been over 2 months since I have posted on here. I am laying in bed wondering where the last two months have gone. Granted, there were the Holidays but oddly I feel like it was yesterday when I posted on here. It is times like this that I realize that I have let the MS control me. It gets me so frustrated when life just passes by and you feel as though you are in the moment but when you look back you realize you were in bed and doing everything to fight this disease. I call it "Fight to Survive" mode.

I swore a year ago that I was going to try to fight and ride out my MS attacks. I was not going to rely on the Solumedrol to help me. Let me clarify quickly. Solumedrol is great and a huge help in trying to suppress an MS exacerbation. For me, I have horrible side effects and those side effects seem worse to me then fighting the MS exacerbation. When an exacerbation effects my vision, then and only then is when I have an inside battle on what to do. So, in November, my vision was very blurry and I was falling and very unbalanced but it was always happening on the right side. Every time I would fall it was to the right. When my vision went blurry and I was falling, I made the decision to finally take the steroids. My Neuro knows how hard they are on me so we decided that instead of doing 1000mg I.V. daily for 5 days we did 500mg a day hoping it would help put the MS exacerbation in remission and also maybe not have the side effects.

Well, the attack seemed to have been stopped so that was good however, the side effects were just as bad. And then starting in December, I started having horrible headaches and by the end of December I was very dizzy and constantly motion sick. I have had vertigo before in the past. The room would spin horizontally and I also have had it where the room would spin vertically. This time, there was no spinning. If I would move my head even the slightest... I would get so horribly motion sick. I finally went in to the Neuro this last week. Of course he responded with the fact that he would normally insist on Steroids again but since it has only been about 2 months he recommended oral steroids. He also wants an MRI done to see what is going on. He is trying to determine if this is one long exacerbation since last November or if another exacerbation is happening again. He said that either way, both have been affecting my equilibrium. By doing the MRI it will show if the MS is getting worse or not.

I have to say that I hate going in for the MRI's because you are going to have a 50/50 chance that it is the same or progressing. Who wants to hear that the MS is progressing? I know I don't!! Mabey that is denial or mabey it is just not wanting to hear the answer that we are all expecting to hear. Either way, I am very nervous.

I know I have said in the past that I think when someone is diagnosed with a disease, you go through a "grieving" process. That process eventually goes away but everytime you start to show problems again, the "grieving" process pops back again. And this is where I am at the moment.

I want this exacerbation to end and get on with my life. Get back to enjoying everyday and not losing months of my life at a time.

Just A Reminder: Having MS means having many medications in your home. I have 3 kids. 2 teenagers and one is 10. As I was looking around in my drawers, I have gained many medications over the last 2 months let alone over the last few years. Now, I trust my kids but they all have friends that know I have MS and so I thought it was a perfect time to remind everyone to find a place to lock up all your medications. By keeping them safe you are also helping to keep many kids safe.

Helping Fellow MS'ers

2009-12-02T18:25:00.003-06:00

A few months ago I called the MS Society to find out how I go about opening a non for profit account for donations if I was to do a fundraiser for Multiple Sclerosis. They willingly said they would open an account and that it would be donated at their discretion to research. I explained that this is not where I wanted the money to go.

When I was going through the process of being diagnosed it took about 7 months and another 2 years before I was under more control where I could work part time. It started in August of 2006. I was quickly not able to work. This took our family from a two income down to a 1 income family along with all the medications and Doctor visits and co-pays. This put a major strain on our family and quickly affected our abilities to pay bills along with food and my medications. Christmas holidays approached us very quickly and we were having enough financial trouble let alone trying to give my kids a "good" Christmas. We were already having to borrow money from our parents to help pay our bills. Most people do not go through life prepared for the day that something like this happens and when it does, it is a huge devestation on yourself along with your family. Not olny that but it is a disease that is life long and progressivly gets worse. You are not given a timeline as to how quickly or slowly it will progress and what your needs will be.

That first Christmas I recieved a phone call from my Boss that said not to worry about Christmas and that the Company I worked for was taking care of my kids Christmas presents and also raised some money to help pay a few bills. I was so emotional about that. I was so greatful but also embarressed that people were doing this for me. Some that I knew very well and a lot were strangers that just knew our story along with friends and family. A few days before Christmas the tree was filled with presents for my kids. Nicely wrapped and labeled. Between my Family and Friends and work almost all my bills were paid that month along with help given to our family throughout the years by my family and friends. It gave me a new outlook, as we all know about Santa. That year I realized that Santa doesn't have to be a big jolly guy in a red suit.

I will never be able to repay every person that has helped our family over the years nor do I believe they expect me to. All I know is that whenever I can and in whatever way I can, I have wanted to be able to help other people with MS and their families any way I can.

When I called the MS Society and asked abut the account, I explained that there is enough money going into research and that my goal was to raise money and take item donations, to help people and families affected with MS and help them. I was told that if I wanted them to open a non for profit account. The Society's way is the money would be used the way they wanted to use it (Mostly for Research). I was so frustrated and discouraged but have never given up on the idea. When you are diagnosed with any desease, in most cases those families will have to face very hard decisions. Decisions such as buying medicines or food for their family, bills or shoes to put on their childs feet, etc... My hope for the future is to find a way to make this dream of mine a possibility and to help families in their times of need because of Multiple Sclerosis and hopefully in time they will try to pay it forward when they can. I will never have enough money that I can give out due to the fact that we still struggle, but there are times that I can buy some extra food or put some money away or even buy some extra clothes off the clearance rack and donate to other families. Or even if there is someone that needs help paying a bill or medications, maybe there would be enough money in the fund to help with that.

I am still looking for the answer as to how to go about doing this as I know there are a few other people that I have talked to recently that also have MS and are trying to find ways to help others in need of assistance. I just need some direction on how to go about starting this and setting up an account. I have been given a location to store donated items and to have a drop off location. I just need to figure out how to set up the account and then to get the word spread. Some how some way, I will figure out a way to make this happen. We all deserve to have help when it is so desperately needed.

Please Take Part in the Polls of the Week

2009-11-30T23:15:00.000-06:00

You Asked for them so they are back!!! Please take Part in them!!!

It has been awhile but I have the NEW "Polls of the Week" Posted. Please take part in these polls. They have been so helpful in the past and I have been asked about them a lot. So, Please take the time to place your votes. Remember to click the answer(s) and then click submit for all 4 questions.

MS Exacerbation.. You are Never Alone!!

2009-11-30T22:11:00.000-06:00

It has been awhile since I have written on here. I have been having a heck of a time recuperating from this last exacerbation. I have learned a lot during this last episode and found it to be important to share to all fellow MS'ers.

Let me start by explaining what an exacerbation is for those that are new to MS and also loved ones that are wanting to learn more about MS. An exacerbation in simple terms is when symptoms, usually new ones, appear and last a few days. Some symptoms could be so severe that on onset you will know it is an exacerbation. Some take time to know for sure. Symptoms will come on and continue to progress. Of course, in the "MS For Dummies" Book it will explain that an exacerbation is only when new symptoms appear. In reality sometimes it will be normal symptoms that you deal with daily but all appear at the same time and continue without improvement. There are also what is called Pseudo exacerbation, which can be brought on by heat or a rise in your body temperature, along with other reasons. But for instance if the symptoms are being brought on by a raise in body temperature, then when your temperature comes down the symptoms will also subside.

Now on with what I have learned.....
When I am going through an exacerbation, I feel very alone. It doesn't matter if I have 5 people standing next to me. I feel alone because no matter how many times you explain what your symptoms are or what they feel like, it is too hard for non MS'ers to understand. I have a great support system within my family but as much as they try to understand and visually see what I am going through it is hard for them to grasp. I just had a 5 day treatment of the I.V. Solumedrol Steroids to help put the exacerbation into remission. The nurses came to my house and hooked me up and then I would go through my "normal" reactions (side effects) from them. Most nights I would be up all night not able to sleep. I would get on the computer and talk to other MS'ers along with friends and family. As much as the side effects are unbearable at times. I had so much support. No matter the time of day or night, there was always someone available to help me through it. Those people will never understand how much that meant to me.

My point to this blog is that when you are diagnosed with something like Multiple Sclerosis. You become a part of a very large family of fellow MS'ers. No matter how alone you might feel at times, it is important to know that there are so many of us that truly understand and are there for you but at the same time so are so many other people. I was not comfortable going to Support Groups. It just was not for me. However, I have started support groups online. I have met so many wonderful people with MS but also talked to the loved ones. I can't express how important it is to find and meet other fellow MS'ers to help you through the rough times and to help encourage you but most of all challenge and push you.

Where did I go? Who Am I Now?

2009-11-11T21:29:00.000-06:00

I am in the middle of an exacerbation and on day 2 of my steroid treatment. They are having to modify my treatments due to my intestinal problems and at the moment nothing is working right. When I am on Steroids I tend to become very emotional.

At the moment I am wondering where the old me went? Who am I now? 8 years ago I was a mother of 3, a daycare provider for 8 kids, I was the head of a Community Awareness program for our neighborhood and helped other neighborhoods start up community groups. I was always doing yard work, crafts, involved with the schools, and was there for everyone.

Today, I sit here wondering where that person is? Where did I go. I feel like a nobody. I am not able to be there for my kids the way I was. I actually have to depend on them for help. I barely have the energy to do any of the crafts and yard work that I used to do. The things that made me happy are gone. At the moment I sit here thinking... Tara, what makes you happy? And I can't find the answer. I am at a place that I feel replaceable. My Daughter does so much of the daily house work and helps with the boys homework along with cooking meals. She does all this with a smile on her face. I go to work most days and try to do my best putting forth all my energy helping others when they walk in the door. I try to make them happy no matter what or how I am feeling inside. I am exhausted mentally and hurt so much when I come home that I take a nap. Some days for a few hours and then come down and be with my kids and other days too tired to even get out of bed. I don't have the same enjoyment in life as I used to get. I know that I am better then I was 3 years ago. I wasn't even able to work and could barely get out of bed along with my cognitive skills being taken away from me. For Gods sake I was put on Alzheimer's medications at 35 years old to try to regain some of my memory. For the most part it worked. Some things I still have a hard time comprehending but I figure out different ways to overcome it.

I think for the most part I am doing the best and most that I can but at times like this I feel like I am lost. In some ways I feel replaceable. I hate this feeling and I don't know how to overcome this. I have always been a very strong person and I feel so weak right now. I feel so unimportant and unable to make people happy. My whole life has been about making people happy. It didn't matter how I felt or what I had going on in my life. I felt that my job was to take on others problems and help them solve them so they would be happy. By doing that, it would make me happy. I never wanted to disappoint anyone and right now I feel like I am disappointing everyone. I can't control this disease, I can't control my intestinal problems, I can not control when they want to exacerbate and of course it never comes at a good time. I don't know if there is ever a good time and I will always let people down when this happens. Of course when I let these people down then I get more upset and worried and depressed. This time of year is not a good time because of the holidays and my kids birthdays and Christmas. Every day I am out of work is less money I have for that. Which of course depresses me even more. Then I blame myself for letting them down. Not that we spend much on Christmas but it is just another disappointment to myself. As I am writing this I am realizing that I probably am not letting other people down as much as I am letting myself down. I am not used to that and I don't know how to cope with that.

I just want out of this. I want everything to go away and my old life back. I want to be the strong one that can accomplish everything and be there for everybody especially my kids and my husband. I know that life takes turns for a lot of people and bad things happen but it seems as those people tend to handle it better than me. I am lost. I want to know where I went and how to get me back. Or if that can't happen then I want to know who I am now? And understand how to be this new person?

I don't know if any of this makes sense to anyone but it is how I am feeling right now.

They Don't Get it Until They Get It!!

2009-11-09T20:37:00.000-06:00

I have talked to so many MS'ers that have said that friends and family members don't understand MS and what we go through. I have gone through that with friends and have even lost a few friends due to that reason. (However, I have gained so many wonderful MS friends) but until today I have never experienced the feeling of not being understanding and support from my family.

I know my family member probably didn't mean to make me feel the way I do with what was said but I have been crying and torn up since that conversation. I am having an exacerbation and I try to work through them without doing the steroids. I am tired of fighting this and I hurt all over along with my ability to see it really bad. I feel like hundreds of pins and needles are going throughout my face and body including my eyelids. I feel as though I am looking through thick glass and so everything is distorted and blurry. I do now understand how it feels when you are let down by a family member not being supportive of your MS.

When I finally give in to taking steroids treatments it is because I can not deal any longer with the symptoms. I feel so much guilt taking the steroids because of work and my family. I don't tolerate steroids well and the side effects are horrible for me. So it takes longer to recover. At this time of the year, with the holidays upon us I am stuck trying to decide if I should do the steroids and feel better for the holidays or not do the steroids so I don't lose out on a paycheck and affecting Christmas presents along with the anger of weight gain. I don't know about everyone but I literally put on 7 pounds each of the 5 days of treatment. So yes, by Sunday I will weigh 35 pounds more than I do now.. That is something I look forward to. OH and lets add the fact that I will be up for 3 days straight witout the ability to sleep and my body will be so exhausted that I can't see straight or think at all.

I am chosing steroids so I can be without this horrible pain and so I possibly can see better and be fine to enjoy the holidays.

I don't think there is anything we as MS'ers can ever do or say to make poeple understand what we go through everyday and during an exacerbation. I have said in the past and I really stand by it when I say....

THEY DON'T GET IT...UNTIL THEY GET IT!!!

Intestinal problem Newest Updates and Some Answers

2009-11-03T15:15:00.004-06:00

I know it has been awhile since my last update about the testing for the intestinal problems. However, this is how long it takes to get most of the results back. So I think I left off with telling you that my full "body cavity" tests came back normal. My GI Specialist had said he felt we should remove 80-90% of the large intestine. He referred me to a Specialist in Chicago at UIC Hospital and she was awesome. She said that there was a chance that she would agree with my Specialist but felt there were more tests that needed to be done first. Her opinion was that if they remove it then they can't replace it. She felt that we should exhaust all options first.

She started me on 2 steroids. Not normal steroids that we take for MS. They were steroids that were only going to help the intestines. I noticed a difference about 4 days later. The changes I noticed was that I could breath better (not so much pressure in the upper chest area) and some of the bloating went down. I had 8 different blood tests taken for all sorts of test. Along with a Nuclear White Blood Scan. It was weird but interesting. They removed a huge amount of blood and took the white cells out and added radiation to them and then inserted them into me. Then they took scans. I noticed the nurse acting a little different while the scans was being done and I was very nervous. Then she said I needed to come back the next day for some more scans. Then I waited for results to come in. Waiting is something I am not good at. I was getting very impatient especially once I knew that most of the results had come in but that my GI Specialist "was not comfortable" giving me the results and that I would have to wait for the Specialist in Chicago to call me.

Well, She called me about an hour ago and said that my Nuclear scan showed Inflammatory disease in the entire left side of my colon. the blood work so far was all normal but still waiting on these 2 last blood tests. I asked her what this meant. She said that it could be a very rare case of Crohn's but that she doesn't think that is it. She said the tests will tell her the answer. She believes that either it is 2 different autoimmune diseases going on or it is the MS causing this. I asked her where we go from here and she said that if the test concludes that it is autoimmune, there will no way to determine if it is the MS or another autoimmune disease so her answer would be to stay on the steroids and switch to Tysabri.

I do know a little about Tysabri but only from some of my fellow MS'er friends that I have met on here. The Specialist said that if it is the MS then it would prove that the MS is progressing or may have jumped to Progressive MS instead of Relapsing Remitting. Which with some of the other issues I have had going on that would make sense. If it is 2 different autoimmune diseases then the answer would still be the same...Needing stronger medications. So probably by the end of this week I should have more answers but I promised to keep everyone informed as I found things out.

It's funny... Part of me is excited that we are close to an answer and treatment and yet the other part of me is thinking... Holy Shit I may have 2 diseases going on. I am trying to ignore that part and thinking it is the MS and that it has progressed. I kind of knew this was going on but I wanted to get the stomach issue fixed before I went to see the Neurologist about the MS issues I am having. Can you believe it... The other day I got lost in my own basement! My brain misfired on me, I guess. I could not figure out how to get out of the basement. As funny as it was that also was scary to me.

That's all for now!!!

MS and Smoking! How do you quit?

2009-11-03T11:46:00.001-06:00

I know they have proven that smoking can actually make MS worsen quicker than a non smoker. I am a smoker and I think I can positively say that since being diagnosed I have been smoking more then before I was diagnosed. I don't know if it is the stress or if it is because I am not as active sometimes I even wonder if it is because I don't care anymore. I am trying to figure out how to quit. Since being diagnosed I have had the I.V. Steroids so many times that I weigh about 25 pounds more then I did before those treatment. I also know that I am on so many medications that I really have a hard time adding more medications to the mix. I am trying to figure out how to quit without using medications. I know there are many people that have quit using different treatments. I am looking for those with MS that have quit and how they went about doing it without using medications. With the Holidays coming part of me feels this might not be the time to do it and the other part of me thinks it is a great time to do it.

I want to quit for myself but a larger part of me wants to quit for my Children and my parents. I know they would be so happy if I quit. Maybe, because of those reasons the stress is even worse. I know you are supposed to quit for yourself but apparently quitting for me is not enough of a reason for me to quit.So I am going to have to use them as my reason. Sad, I know, but it seems like I have lived my life doing things to make others happy or proud of me. So I am hoping to that will work for me now.

We have a Wii and a treadmill and weights. It is getting to cold outside for me to go outside and do activities. My biggest concern is WEIGHT GAIN. I can not gain anymore weight. I have to start losing weight. My weight right now is horrible and I get depressed looking at the scale and how my clothes fit. So I need to do this in a way that I either stay the same weight or start losing weight. If I could lose weight and quit smoking I would be a super happy camper.

I am looking for someone with Multiple Sclerosis to help give me advice on how to do this without using medications and adding exercise (as a MS'er with balance issues and severe muscle spasms).

I really have no excuses. My husband doesn't smoke nor do my kids (thank God) and nobody in my family smokes and most of my friends quit.

Any Suggestions??? Or any routine I can get into?? I need someone to tell me how to do this and what to do. Not someone that does not have a disease. And not someone that is going to say "Just quit". It is harder thank you think.

Talking to Your Children about Your Diagnosis of Multiple Sclerosis

2009-10-30T18:07:00.004-05:00

Going back in time again guys but I have talked to quite a few "New MS'ers" lately and I am writing to help with some of their questions they had but also to help anyone else that may be wondering.

When I was diagnosed with Multiple Sclerosis, my children were 14, 11, and 8. Along with the difficulties of dealing with being diagnosed with a disease like MS, came the difficulties of deciding how to tell the kids. I am not sure which is harder getting the diagnosis or answering the questions your kids will ask. For some people, Multiple Sclerosis is diagnosed very quickly due to a rapid onset. For most people getting the diagnosis comes after months or even years of symptoms and testing. Kids are smarter then we give them credit for. They know when Mom or Dad are sick, hurting, upset, and even scared. I think there is controversy about what you should share with your kids. Some might feel that there kids would not understand, or that they might get too upset, or even treat their Mom or Dad differently if they knew the truth.

I was initially diagnosed in August of 2006 but actually confirmed diagnosis in March of 2007. There was a long period of time before getting the final diagnosis. I was bedridden and my cognitive skills were rapidly declining. I too felt that my kids were too young to understand. One day my middle child ( my son) came into my room and laid next to me and as he laid there he kept looking at me. I knew he had something he wanted to ask or tell me but did not know how to say it. Then the words came out. "Mom are you going to die"? I started to tear up. Here I thought I was protecting them and instead my children were fearing the worst. I decided right then and there that it was time for me to do some talking and explaining to them about what was going on with me along with what Multiple Sclerosis is and what it does. The biggest problem I found is that I did not know how to explain something that I did not even understand. Along with that I knew I was dealing with three children at three different ages. I took the time to talk to each one individually at each age level.

This is very hard to do because at that time I, myself did not understand what was going on with me nor did I understand Multiple Sclerosis either. I am a firm believer that if your child is capable of asking a question then they are capable of getting an answer. I do not believe that going overboard and telling an 8 year old all the same information that I would tell a 14 year old is necessary. I could tell them about the pains I felt and I could explain that the doctors were working very hard to help me get better and then the doctors would be able to help treat it. I could explain that I would have some changes in the way I do things and that there might be things that I could not do the same way I used to. But I could not explain what Multiple Sclerosis does and why it causes me the symptoms that it does cause. During that time I had 14 different symptoms that had all appeared at the same time. One of the symptoms was that I would pass out if I was overly stressed or even the change in the air temperature. One day my middle child and I were having an argument and I passed out. I was in the process of coming to. My eyes were still not able to open but I could hear what was going on around me. I could hear my son crying and very upset that he was causing this to happen. It did not matter what we said to him, to make him understand. In his eyes he caused this attack. This is something that will always be in his head and he will never forget.

My point is that if you are not talking and explaining to your kids what is going on. Kids will come to their own conclusions and find that they are blaming themselves for what is going on with you. It is important for you, a spouse, or a family member to take the time to explain to the children about Multiple Sclerosis and to keep the lines of communication open with them.

You are just told that you have Multiple Sclerosis, Now What?

2009-10-22T19:10:00.002-05:00

I am going back in time with this blog. This is for the Newly Diagnosed fellow MS'er. For anyone else that reads this please feel free to add some encouraging information or advice.

The emotions that hit you can range from relief to total misbelief. I remember waiting 6 months of going through all of the testing and waiting. I was almost bedridden throughout the entire time. I begged almost daily to please give me the answer so that I could get the treatments so I could start getting better. It is so hard waiting for an answer when you are so sick and in so much pain.

Then the day comes and you hear the words from the Doctor that you do have Multiple Sclerosis. At first I was relieved and oddly enough happy to finally have an answer. I actually shook the Doctors hand and thanked him when we left the Hospital. That is where the Specialist was that had to go through all of my testings and symptoms and results. Wow, I actually thanked him for telling me I had Multiple Sclerosis. We walked to the car and pulled out of the parking lot and started the journey home. About five minutes into the ride home my smile started to disappear as I thought back to what was just told to me, and how this disease will affect my life.

All of a sudden the thoughts started circulating through my head. Disease? I have a Disease? How can this be? How do I get rid of this disease? I don’t have time for a disease. This means that the Doctors can't just fix me. Why Me? They have to be wrong! I don't want to have a disease. The Doctors have to be wrong. I have kids to raise. How can I be the Mom that I want to be if I have MS?

Obviously, within about twenty minutes into the drive I was very quiet and staring out the window. Not noticing anything going on around me. Thank goodness my Husband was the one driving. All of a sudden I felt the tears rolling down my face. I never did talk the whole way home I just cried. When we arrived at the house I went straight to my bedroom and pretty much locked myself in for about 3 days. Eventually I would come down and stay downstairs but I would start crying again and back to my room I went.

Eventually, I found that coming out of my room at night while everyone was sleeping was easier. I slowly started getting on the computer looking for any information I could find. I found a lot of negative information along with some very bad advice. In time I started finding good information. Hopeful information. That hopeful information started me to look at MS differently. I started to see that I could still have a life. Maybe a different lifestyle or changes in the way I normally did things but that I could still have a life.

There is a time period I went through that I refer to as the "Grieving" process. The grieving process can be short or can take a while to go through. I came to the realization that the "Old Me" is gone and now it is time to find the "New me". Figure out what the new me is capable of. It has been 3 years now and I am still trying to find the new me. It changes frequently due to the fact that Multiple Sclerosis is constantly changing what I am capable of doing. Sometimes for a day and sometimes forever. I have met a lot of people over the Internet with Multiple Sclerosis in the last 3 years. I have found that sadly there are people (fellow MS'ers) that have it a lot worse then me and some that don't.

Multiple Sclerosis affects everyone differently. Yes we all have the same disease but the progression is different in everyone. Yes, we all have a lot of the same symptoms but at different degrees of severity. The one thing that I have found is that no matter the degree or level of severity of the disease. The very large family of MS'ers we have joined, most of them are very helpful. I found it to be very helpful and easier to accept having MS from listening to them and talking to them. It does not take long before newer diagnosed MS'ers will be coming to you for advice or help. The first time someone asks you a question or comes to you and you help them it brings some happiness to you. I have gained so much strength by helping other fellow MS'ers. It has helped me to accept having this disease.

Every time I get down, sad, angry, or even to the point of wanting to just throw the towel in and give up. I think about everyone else fighting this disease and I don't feel so alone.

What to Do About the Swine Flu???

2009-10-21T00:25:00.001-05:00

I am getting more and more worried about the "Swine flu" and if I am making the right decision to not take the immunization for it and also the flu shot. Last week a child died in Naperville which is only 20 minutes from here and this week another child passed away in the very next town over from where we live. I have heard that Swine Flu is in our schools and probably only a matter of time before they consider shutting the schools down.

We live in a very small town and If someone in one school gets sick it passes through all the schools due to the fact that everyone has older or younger siblings in the other schools.

I made the choice not to do the flu shot nor the "Swine Flu" immunization. I know that I have been fighting the MS exacerbation for a bunch of months now and not sure how well my immune system is at the moment. I know that I haven't been feeling well the last few weeks but trying to hold out to get to my appointment this Friday with the Specialist. Remember... 1 thing at a time. The thing is, that my kids are starting not to feel well and it is scaring me. I have 3 more days til my appointment. Then I will hopefully have the answer to what is going to happen with my stomach issues. I wish there was a crystal ball at this moment to tell me what to do.

I read an article about 2 weeks ago saying that older people, people with compromised immune systems and young kids are the ones with the chances of having the worse complications with The "Swine Flu" it said that the teenagers were the ones not getting affected as bad. This week they said that out of 45 people that tragically died from Complications due to other factors but also had swine flu were the teenagers. So which one is it???

I would love feedback as to what you are choosing to do? I know I haven't gotten phone calls or letters from my Doctor telling me what to do.. So, I would love to see what you are choosing..

Question Migraines and MS?

2009-10-19T21:44:00.001-05:00

It is not normal for me to write a blog asking for help with something but I am doing it now. Please help if any of this makes sense to you.

For a little over a week now I have had these never ending headaches that are horrible. I thought it was my sinuses I have tried Sinus medications, Excedrin, Tylenol and Motrin. I don't have any other symptoms but it hurts so bad behind my eyes at first and then travels to my temples and across the forehead. Some days I get nauseated and others just very sensitive to light. This has been happening everyday for over a week. I used to get migraines a year before being diagnosed with MS and then they went away. Most of them would hurt in my jaw also and these are not. So I am not sure if it is a migraine or not. I am not on any new medications so that's not the issue. I just can't believe a migraine can last over a week coming on everyday. I hate to try to relate this with MS but I just want to see if anyone else gets these and what it is??? I thought about getting my eyes checked but don't know if I should do that or call the doctor. My vision seems fine. I don't know what optic neuritis does but I would assume my vision would be blurry. Any Suggestions??

The Waiting is Making Me Go Crazy!!

2009-10-15T21:33:00.003-05:00

I am still waiting to see the Specialist, which is a week away. I am nervous and excited at the same time. I guess after hearing that there would be a cure for my intestinal issues, I have been so excited. I have been fighting this for way to long. I have been so excited that it wasn't until I was talking to my Dad about it and hearing his hesitation that it finally dawned on me what my Parents must be feeling. I know as a parent myself. If one of my kids needed to have a surgery like this I would be scared to death. It would be hard for me to see and understand the excitement in my child knowing they would be having major surgery like this. For 6 weeks now ever since I was told about this option I have been thrilled and saying "what the hell are we waiting for??? Just do the surgery and let me get on with my life". So when I was talking to him last weekend I could hear the tone in his voice and all of a sudden it made me stop and think about how they are feeling. I explained that to him but also told him my side.

"MY SIDE" - Dad, there are many symptoms of MS that I deal with daily, weekly, and monthly. Then there are even more symptoms that come on like a bat out of hell and knock me down for the count. There are 3-4 symptoms I deal with everyday and I can't do much about it. I still get up and showered, I go to work, I put a smile on my face and try to be the happiest I can be. When, inside, I am hurting, crying, miserable, sad, and angry. Some of the symptoms you can try to ignore but some of them are impossible to ignore. I can ignore the numbness and burning and prickling sensations, I can ignore the pains in my legs and muscle spasms most of the time, I can ignore the memory and cognitive issues (I laugh them off as though I just am not quite awake yet or too much on my mind and nobody knows the difference), I can ignore the tremors in my hands. The one I can not ignore is my intestinal issues. So to my Parents and Loved ones.... If there is one symptom that can be taken away... I am excited.

What I am nervous about now is what if the Specialist in Chicago decides she wants to try some other drugs that won't work just like the others. Or wants to try some other crazy thing like stand on my head for 4 hours a day to see if that helps my problem. I am going to be so depressed and angry. I have tried everything the Doctors have wanted me to do for the last few years and none has worked and now the final decision comes down to a single Doctor who doesn't know me, has only read my records and will probably only spend 20 minutes with me. I don't understand how that Doctor holds all the control.

I don't know if this makes sense to anybody but my head is spinning out of control and I needed to dump it out. I was hoping that by writing this maybe something would become clear to me or make sense but it really didn't. My head is still spinning and I am still just as worried.

I will keep you posted next weekend as to how it all pans out.

Taking Control of Your MS leads to Taking Control of Your Life

2009-10-07T13:41:00.002-05:00

I have been talking to many people with Multiple Sclerosis and I was inspired to write a little about it.

As you all know I am pretty public and open about my MS. That is my choice and the best way I can think of to help others dealing and coping along with understanding Multiple Sclerosis.

The last 10 months have been a major roller coaster ride for me and to be honest I think I am getting a little motion sick from it. It was my choice not to do the steroids for the flare up and I chose this option for a few reasons. One, I have horrible side effects from them and two, I hate the weight gain. However, I was looking at myself in the mirror the other day and no... It didn't break...Thank God... But I noticed that I have put on probably about the same amount of weight over the 10 months that I would have put on in 5 days and probably been able to avoid all these months of being in bed.

With that said, I still try to keep a positive outlook on life. It is very hard at times to continue doing that. I have been talking to "Newbie MS'ers along with others that have had it for years" and it seems like there is a lot of depression and frustration going on. I myself am going through that pretty hard along with anger, sadness, denial,and at times... Giving Up and seclusion. No, these are not the right approach to handling this disease but it is a fact... Most of us with MS will go through these emotions. For me, I need to go through these bad times and emotions to finally get me angry enough to start fighting this disease again.

Multiple Sclerosis can be an extremely exhausting and emotional disease. I don't know too many people that can keep up a consistent positive attitude throughout the course of this disease. However, I think it is so important for all of us to find "something" whatever that "something" is to bring back some of our happiness or strength to fight. For me it is helping others understand that they are not alone in this battle along with spending time with my family and doing some of my crafts that I love to do. I have let myself let go of some of those things and the MS has had a hold on me for some time now. It's funny how I can let that happen to myself but I refuse to let that happen to others. I will be the first person to tell you to fight like hell and to never give in to this disease. We all have heard the saying... "I have MS but MS does not have me"...Or maybe that is one of those quirky sayings I come up with in my own head but it is true. If you are finding yourself getting down and frustrated and giving up or maybe not doing the things you are supposed to be doing (that make you happy), then that should be the first indication to start getting angry at the disease and finding whatever strength you have to slowly gain control of what you can.

Which of course leads me to explaining for those that don't understand MS so well or are new to MS. There is not a course that MS follows. MS affects everyone differently and at different speeds. So, for some people that have MS..They may not have frequent relapses or not many symptoms on a daily basis. And if they are lucky they may not progress like others and the medications they take will keep it under control. For the majority of people with MS life seems to be completely different. It is not a disease that you will ever understand completely. Heck, if the doctors can't figure it all out then we surely can't either. There are no guidelines to this disease. One day We may be fine and doing things normally and in 24 hours or even an hour later something major can really change the course of this disease. We can not control it like we can control other aspects of life. This disease controls us to a degree. It can come on whenever it wants and affect whatever part(s) of the body it wants for however long it wants. It is our responsibility not to give up and let it continue to control us. If you are used to running 3 miles a day and all of a sudden you can barely walk without your legs collapsing. Then in time you slowly work your way back up to doing things. It might be walking with assistance down the driveway, or even just to the kitchen. I refer to this as taking "baby steps". Every "baby step" you take is gaining you control. And then everyday you do a little more and continue this until you are doing the most your body will let you do. That is how you take control of your MS. If it was up to the MS it would have us all bedridden waiting for the end. Be proud of the things you do, to take control.

It is so important to find things to be proud of and to be happy about. By doing this, you are "TAKING CONTROL OF YOUR MS" which leads to "TAKING CONTROL OF YOUR LIFE"

Results and More Updates!!!

2009-10-04T11:26:00.001-05:00

This has been a very eventful last couple weeks.

Update to my test:
First of all lets start by saying that prepping for the colonoscopy is no fun.. But both the Colonoscopy and Endoscopy came back perfect. Which is confirming what the Dr's thought all along. The intestinal issues are being caused by the MS. So I am being referred to UIC Hospital in Chicago to a Women's Gastro Specialist for a consult to see if she has any other ideas before going through with the surgery. My Doctor after the surgery is saying he thinks 80-90% of large intestine should come out leaving me still with enough that I wouldn't need a colostomy bag or anything like that. I am going to see the Specialist in Chicago to see if she can think of any other options and if she agrees with my Doctor then that is the route I will go. I need this fixed fast and very bad. Ever since the testing I have had nothing but Spastic Colon attack that are non productive and severe stomach bloating. I hate to even eat anything because anything I eat causes the spastic and then the bloating get even worse. For those of you wondering I am still taking the Magnesium capsules but not as effective right now. I think the prepping did some crazy thing to me.

Update on the rest of Life.

This last week and a couple days. I have had a very hard time walking. I still have the normal "Numb, painful, jello, prickling" sensations and the spasms but my right leg is going through crazy stuff. From my hip to my feet the bones feel like they are about to break and the muscles feel as though they are either being ripped out or disintegrating. I have been using my canes and trying to go to work even if it is for only a couple hours but the pain is so bad I want to cut my right leg off. The last 2 days I have tried not using the cane so much but it is not easy. I use the cane more for just the fear of falling but also it helps relieve some of the pain when I take a step. I don't know if this is because the weather is changing or if this is an MS exacerbation along with the "drunken walk, trip, fall" that sometimes happens but I have made the decision to tackle 1 issue at a time. The stomach issue is the worst for me and what I want taken care of so that is the route I am going first. My appointment with the Specialist in Chicago isn't until Oct. 23 so I am having to wait and be patient.

As for other updates:

Last night was my daughter's Homecoming and of course all plans changed and not much of her plans worked out. Actually the only thing that did work out was she made it to the dance and home from the dance... But she looked beautiful.

That's all for now. I am sorry I haven't been on much but going through a rough time of not really having much "Good" to say and I am kind of in that very "angry, sad, why me, and depressed" phase.

I will keep everyone updated as time goes on.

Thank You again for all the e-mails and comments of Support and also to those of you that have followed me on Facebook and Twitter. I do try to keep Facebook a fun place and I don't talk alot about myself on there because everyone needs a place to escape from MS!! But I do talk to my MS'ers on there and love having that contact with them. So feel free to add me on Facebook.

Changes in MS Symptoms

2009-09-24T20:33:00.000-05:00

I have been going through so much lately with the intestinal issues as you are all aware of. However I have noticed some other changes with the MS also. I am not sure when you say enough is enough? But I think I am there.

About 2 months ago I wrote about how my fingers feel so swollen that the skin is about to burst open. Then the numbness in the finger tips started and then came the prickly sensations in the tips of my numb finger tips. I also have been noticing some other issues too. I have tried hiding them because I know my family and friends know about my normal everyday symptoms and the intestinal issues that I haven't wanted to bring up the new issues but at the same time I haven't wanted to deal with them either.

So I am now admitting that I have been tripping and falling a lot more often. I never really had that happen before. I have had the "numb, painful, burning, jello feeling legs" but I always seemed to manage to walk. It hurt and I am in a lot of pain but I can do it. However over this last month I have noticed changes where I feel like I am walking as if I was drunk. Swaying and tripping and falling but the thing is... It is always to the right side only. I don''t feel as if I am having an exacerbation because I am functioning with everything else. But it scares me to know that this is happening.

I make canes for people and I have made many for myself but I don't trip and sway or fall all the time it just happens sporadically. I kind of feel that I don't need a cane or device most times but yet I never know when it is going to happen. I have not called the Neuro because I am going through all the other crap with the intestinal stuff and tests that I wanted to wait til this is done before dealing with the Neuro and his tests.

I finally broke down the other day and cried. I Don't want this Disease. I don't want to deal with these symptoms any more. I am tired and worn out. Why is this happening? I mentioned it to my Mom the other day because I think I wanted to or better put I needed to tell someone. Her response was "What can I do to help you?" and in a smart ass way I said can you fix me? That is how I feel at this point. I just want some of these issues to be fixed and then maybe I can deal with the other issues. What is the point in calling the Neuro at this point. All he can say is I think the MS is progressing or Maybe we should try steroids. Both answers are not answers I want to hear right now. I feel like I can cry at any second because it is getting to the point of to much for me to handle.

I am trying daily to get up and go to work but really all I feel like doing is sleeping. My alarm clock is blaring for almost 2 hours before I even start to hear it. Going to work makes me feel like I still have some control. When people come in they look at me and have no idea that I have MS or that I am in so much pain every step I take or that I can't feel my fingertips as I am putting their information into the computer or beter yet they have no clue that I am wearing an XXXL t-shirt hiding how big my stomach is because of my stomach issues. I keep a smile on my face and I joke with them. I like people not noticing the MS and I guess I am just afraid that I am getting to the point that it is going to become more apparent if things keep going on.

It is getting harder and harder for me to act or pretend to be happy and I need to find that side of me again. Hopefully tomorrow it will be back. Or at least that is what I have been hoping will happen for about a month now.

I guess that's it for now... I have emptied what is going through my head, at least for tonight.

My Testing for Intestinal Issues

2009-09-23T18:49:00.001-05:00

I went on Monday for my testing. They did an endoscopy along with the colonoscopy. Most of you should know what a colonoscopy is but for those of you who don't know what and endoscopy is. They put a scope/camera down my throat and esophagus. I like to refer to Monday as a "Full Body Cavity Check". For those of you just tuning in.. One of my major issues since being diagnosed with MS is Intestinal Shut Down. Basically what that is is your severe constipation due to the nerves not working correctly from Multiple Sclerosis. I really don't like to talk about this subject so I will make this part short and sweet. Apparently I get so extremely constipated that my intestines become very slugish and then just stop working. According to the Gastro Intestinal Specialist, this is common with people with MS maybe not to this severity but is common. He explained that your intestines and colon are run buy hundreds of nerves working together to make your intestinges and colon work properly. Multiple sclerosis affects your nerves and how they work or damages them to the point that they don't work at all. Hence the reason I am in this situation.
He decided to do this test since the small intestine test came back normal.

Prepping for a colonoscopy is not fun and is really not fun at all when you have intestines and a colon that don't work properly. For most people the prepping is bad enough but for me my stomach expanded to the size of a 19 month pregnant person. I hope I never have to go through that again or at least not until they get my intestinal tract working.

The GI Doc did the tests and said that nothing was abnormal in either direction. He did do biopsies and sent them off to run for all sorts of tests but still believes it will come back confirming that it is the MS causing the problems. He did explain that one test is for a bacteria in the stomach that can cause some of the same problems. If that is the case then it can be treated with an antibiotic. He also said they would test for Celiac's disease along with a bunch more. He doesn't expect to get all the results until the end of this week or the beginning of next week.

If the results all come back fine then he will send me to the bigger hospital in Chicago for any input but he said that the colon which is your large intestine is not a super important part of the intestinal tract to have. ( The Colon is basically the area that does the hardening of the stools) OK. Yuck... Don't like to think of that but he said that they have found in some people in my condition that removing 80-90% of the colon/large intestine has worked great and still allows for a normal functioning of the intestinal system. Basically it just shortens the length that the stool has to go through. Leaving people like me to no go through the extreme issues I go through daily. He also said that by removing that amount still leaves you with enough that you do not have to have a colostomy bag. Yeah!!!

To sum this up.. No results til next week and neither the GI Doc nor myself are expecting there to be anything that shows up. If that is true then I will be going to talk to another specialist to see if there is any other tests or treatments and if not then the surgery will happen. I know this sounds weird but I am ready to just do the surgery and allow me to have some sort of normal life when it comes to that problem.

I will keep you all posted on the results and then what the conclusion is. Basically I will just be writing the book from start to finish of "Tara's Intestinal Issues, Treatments and results" STAY TUNED!!!

A Little Financial Tip to Survive A Life-Altering Diagnosis

2009-09-20T22:43:00.002-05:00

Quick Update: Tomorrow (Monday) As you are all aware I am having 2 tests done tomorrow. Endoscopy and also the colonoscopy. This has been a difficult week and Preparing for the tests today has not been fun at all. I am hoping this is all worth it and hoping the Doctors will figure something out and a way to fix the intestinal problems I have been having. Along with that hopefully they will figure out why I am prone to yeast infection in my throat and esophagus. I will continue to keep you all up to date. As usual I don't hold back as I feel it only helps others out there going through the same issues.

This information was past on to me and so as usual I am passing it on to you.

A Little Financial Tip to Survive A Life-Altering Diagnosis

People who've received a life-altering medical diagnosis aren't alone in the trials and adjustments. The U.S. Census Bureau has recorded more than 54 million Americans who have reported a disease or injury affecting their ability to perform everyday tasks at home and responsibilities at work.

That's why the government took notice back in the 1950s of the financial struggles Americans were facing and created Social Security Disability Insurance. SSDI is funded through mandatory payroll taxes from your and my paychecks which in return provide monthly subsidies to those impacted by long-term medical diagnosis.

While SSDI has brought relief and hope to millions, there are a few challenges to overcome in the system. In January 2009, almost 3 million individuals who have applied for SSDI are stuck in the system and will wait an average of 2-3 years for assistance!

Overwhelming? Yes. Still, applying for SSDI is one of the best financial steps you can take when a diagnosis like MS appears to have long-term impact. These benefits are rightfully yours if you qualify. From Allsup's website, below are a few suggestions to help the SSDI process move a little quicker:

1. Determine your eligibility for SSDI. A few eligibility guidelines are 1) you?ve received your diagnosis before full-retirement age (65 to 67); 2) you are not working due for reasons like MS; and 3) you have received a taxed paycheck for five of the last 10 years. For a full list of criteria, visit this link to Allsup.com.

2. Ask your doctor for a written medical confirmation. At the beginning of your application process, you will need a letter from your doctor confirming the diagnosis and listing the conditions that qualify you for benefits. If you don?t, this can slow the process down a month or more.

3. Meet deadlines. If benefits are denied at any stage of the process, there is only a 60 day window to file an appeal. You don't want to miss the deadline or else the process starts over from the beginning.

Don't give up during the application process! Get help early and be persistent. While 60 percent of first-time applicants are denied by the Social Security Administration, it?s also known that two-thirds of applicants who appeal eventual receive their financial assistance. No one could have prepared you for the day the doctor said, It's MS, but there is help available and government funds to give back a little of your stability.

MS'er Not Happy

2009-09-15T06:56:00.001-05:00

I am on day 2 without my leg pain meds because of prepping for the tests on Monday. I was up on and off all night with extremely bad leg pains. Even when I finally get out of bed because I can't sleep, I am still in so much pain. I can't imagine going all the way to Next Monday in this kind of pain. I have been trying take the edge off with Extra Strength Tylenol since that's what they said I could use and that is not even touching it. I know I need to have these tests done but holy cow!!!! I sure hope I can make it through this week without cutting my legs off.

MS and Intestinal Problems.. Preparing for Tests

2009-09-11T17:17:00.001-05:00

So, I found out that when having to do this second phase of my testing (Endoscopy and Colonoscopy) I have to start prepping for it a week early due to the medications I take for MS. I am really nervous and frustrated. I have to stop taking the medication that means the most to me for my leg pains. Here is the thing. For me to be able to tolerate the pain of walking I take a very high dose of Nabumetone. It doesn't take all the pain away but it takes most of the pains away along with the baclofen and lyrica I seem to be able to get through the pains in my legs. I will not be able to take the Nabumetone starting Monday morning for an entire week because it is considered an inflammatory medication. I can continue the other meds but that medication I rely on the most is the Nabumetone.

Of course then starting next Saturday night I start clear diets and Sunday the prepping and apparently Monday more prepping and then the two tests. Due to the medications I take I can not have the normal anesthetic apparently I need to be completely anesthetized which is fine with me. Who wants to be even semi awake when they shove a camera in both ends of you anyways??

Tomorrow is the big Fair here in town and it is not a small one. It is one of the best fairs around. I want to go so bad but I am very nervous about the fact that walking so much is going to be difficult enough but the pains I will suffer for the next few days in my legs will be extreme. And of course I can only take the meds on Sunday and then no more. I do not have a wheel chair nor do I need one most days except for times like this. Of course I don't have the money for one or the desire to buy one for the few times a year that I need one.

I miss not going to craft fairs in Utica or the Sandwich Fair just because of the inability to walk very long without a lot of pain and it breaks my heart because it is something we do as a family. It is very hard having MS and raising kid that are already teenagers because time flies by so fast and then they are no longer living with us. So I treasure the few times a year that we can do something fun as a family.

I am bummed out right now. I will be going to the fair but I don't know how long I will last and that ruins the day for the family. I seem to always feel like I am holding them back from so much fun. And then I will come home and be in bed all of Sunday trying to recuperate as quickly as possible and try to figure out some way to get through this next week. My hope is that they will figure out the problem and be able to fix it. If the tests come back fine then it will confirm the fact that it is the MS and there are some options as well but I will have to continue testing and seeing a different Specialist in Chicago. So cross your fingers that they find the answer in these next 2 tests.

I don't know if I will get around to writing very much this next week but I will start up again once the testing is done.

I guess I spoke to soon and it does not appear that we will reach our goal of 30 votes on the polls this week. We were off to a good start but then it has slowed down. My hopes for the future with this Poll Of the Week is to get as many people as possible to take part so that it continues to help us MS'ers along with loved ones and also the public. I will be delayed in getting the next poll of the week out but I will get it out again after the test. Hopefully by Next Wednesday so a week and a half. Thank You to everyone that has continued to take part in the polls.

Update on the Polls of the Week

2009-09-09T14:31:00.001-05:00

I just want to thank everyone... We are off to a GREAT start to this weeks "POLL'S OF THE WEEK". I am going to set a goal of 30 responses. The way we are going I think we can do it. Please help to get as many people to take part in the polls and lets see if we can reach our goal!!!
Thank You!!!

Moonlight Award!!!

2009-09-09T14:20:00.000-05:00

Well, I finally crawled out of bed after 3 days of non stop sleeping. I went to work and now I am home back in bed. I am happy I went in because it made me get up and out of this house but still so super tired and lots of stomach pains and burning.

Anyways, I came home to a wonderful surprise!!! I was given the "Moonlight Award" from a very Special and Inspirational Blogger. Herrad at http://accessdenied-livingwithms.blogspot.com/
I can't imagine, if you have been blogging about Multiple Sclerosis at all that you yourself haven't read her blogs. And I bet you would agree with how I described her. If you have not, please take the time to read them. You will find that no matter how bad she is feeling she almost always is and has positive blogs and beautiful pictures of her flowers and much more.

Now I will enjoy passing this award off to other inspirational Bloggers.

Blindbeard at http://blindbeardsmsblog.blogspot.com/
Blindbeard always has the funniest stories to read and her picture will make you giggle right away. Please take the time to visit her and her blogs. I am sure you will agree.

Rae at http://myweathervane.blogspot.com/ Rae, I don't even know where to begin... Rae writes the most off the wall hysterical blogs that I as well as many love to wake up and drink there morning coffee while reading her blogs. If you haven't gotten the chance to read her blogs this is a MUST!!! Her blogs are so addictive!!!

Andy at http://jugheadsbaltimoreblog.blogspot.com/ As far as humor goes. He even through his own ups and downs with MS. Seems to always find the time to find some way to put a smile on my face as well as others. I always seem to know when I write a certain blog when the comment will come from Andy. Currently he is going through the IV steroid infusion and even though he is struggling with the issues that the MS is bringing on him he still seems to check in on everyone and bring a smile to you.

Amelia at http://talesoflifewithmultiplesclerosis.blogspot.com/ Amelia, I just admire you and your strength. You are such a caring person. Even with all your struggles with the Tysabri you still push on. And always have the time to encourage me and others to keep moving on. Thank You!

Cory at http://mywifehasms.blogspot.com/
I admire Cory for writing his journey and speaking out for himself but mostly for his wife who suffers from Multiple Sclerosis. Cory, speaking out for those who can't because of this disease is one of the most important things you can do. Be a voice for her and also look for support for yourself.

Lisa at http://brassandivory.blogspot.com/ Lisa, I have to give you a major hand... You know matter how busy you are with your children or dealing with the MS always take the time to update us on such good information. What you do for others is so important to so many of us. Thank You for taking the time daily to do the work you do for us.

It has been such a long time since I received an award and there are so many other Bloggers that I feel deserve recognition but the list would go on and on if I listed everyone. So congratulations to all of you and enjoy passing this Award off to others.

New Polls Of the Week and Update

2009-09-08T15:04:00.004-05:00

Update:
I have been having a rough couple of weeks lately. I am not sure if it is the MS or if it is MS and a virus. Whichever the case I can not kick it. It is wearing me out. I mean literally. I am sleeping 15-20 hours a day the last few days and my stomach has been acting up as though nonstop spastic colon attacks but not being productive just the pains and burning sensations with the hot and cold sweats. The difference is that I have been running a fever. Anyways, just talking about it is making my stomach burn again.

I wanted to let everone know that because of how I have been feeling my questions this week for the "POLL OF THE WEEK" has to do with Flu shots and more of thhe sort. There are only 4 questions and **Remember to Click on the word VOTE after each question or it doesn't save the answers.

Thank You for continueing to take part in the Polls. And oddly enough I have had questions about the flu and flu shots sent to me. Just as a ***Reminder*** I have had so much feedback from fellow MSers regarding the Polls. How helpful they are and how interesting the results are. So feel free to send me more questions or suggestions for future Polls.

Stress and Multiple Sclerosis Good or Bad

2009-09-03T14:06:00.001-05:00

Stress plays a major roll in the way Multiple Sclerosis effects you. We all have had those days when everything is going wrong. The kids are fighting, not enough money to pay the bills, Somebody just pulled out in front of you while driving to work, etc..Stress comes in many forms. Stress can be in the form of "BAD" stress but also in "GOOD" stress. We need to find ways to be prepared or at least as prepared as possible to cope with these stressors so that we can help have some control of our Multiple Sclerosis.

I can't think of a better time to talk about this then now because we are facing the most stressful times of the year. Right now most of us are dealing with kids going back to school. That in itself becomes a stress. The kids are not wanting to be there and not wanting to get back into routine of bedtimes and homework. Of course when the kids are miserable they have a magical way of making everyone around them miserable. I don't know if I have an answer to this situation. However, with the kids being back in school they are sitting in close quarters with other kids sneezing, coughing, and touching all the same things our kids are going to be touching. It is very important to talk to your kids and sometimes their friends if they are over at the house a lot. Explain to them it is very important for themselves but also for you to make sure they wash their hands immediately when they get home. Explain to them that blowing their noses in kleenex and throwing it away is a huge help too. Cover their mouths when they are coughing and most importantly not to be drinking out of eachothers cups. All these little easy things can help you stay healthier. I am very surprised when I hear other MS'ers say that they never realized that they are more suseptible to illnesses because of having MS. Multiple Sclerosis is an Autoimmune disease. In our case our antibodies are over working. They don't take time to rest so that they are prepared for when you get a cold or the flu or even a cut on the leg. Which of course leads me to the subject of when you get sick.

The cold and flu season is quickly approaching us. Some people with MS chose to get the flu shots to try to help. Some chose not to for there own reasons. Personally, I have chosen not to. I am not sure if there is a right or wrong answer to this. I think it boils down to what your preference is. You can try to prepare for this season. stock up on some kleenex, soups, cleaning supplies like antibacterial sprays. I know that they come in regular and also green/all natural cleaners. Whichever your preference. Find a bucket and label it the "SICK" bucket. This way you know where things are when needed. This is helpful when your kids are sick or yourself. I am not going to tell you to stay away from your poor sick children or parent or loved one when they are sick and lock them in a room. But it is important to try to avoid the illnesses as much as possible. The things you can do is make sure you are constantly wahing your hands when you are around your loved ones when sick but also when you leave a store or are in public places. Here is the thing... If you get sick that is a STRESSOR on your body which in return can cause your MS to start to act up. Just as being in the sun in the Summer and your body temperature rises, even 1 degree, can trigger some symptoms to act up until your body temperature comes back down. Enough about this. Let's move on to some of the other stressors that we can prepare for.

The Holidays will be here soon enough. I see those as good and bad stressors. Good because we get to spend time with family and friends that we might not be able to do throughout the year. The bad part of this is the stress of money being spent on Thanksgiving and Christmas. You can't prepare for all of it but you can try to prepare and plan. By doing some planning and preperations now, will lessen the stress on your body as we approach this time of the year. I would have to believe that alot of us will be not spending as much at Christmas time due to the economy but that alone can cause stress. Especially for parents of kids. Our kids just don't undrstand what is going on with the economy. They are used to past years where we all went overboard. Now is a good time to try to explain to them some of the changes that will happen at Christmas this year. Some things I have been doing is when I have an extra 15-20 dollars left to use. I am trying to start picking things up a little at a time. Even if it is stocking stuffer stuff. I don't know about you but those stocking stuffers total up to being a lot of money. So 1 or 2 things every week or every two weeks here and there is less you will have to do in Dec. Also try to think of things you can do simply for your friends or neighbors if you haven't stopped already buying for eachother. There are simple gifts to make and you can wipe out a bunch of people in no time at all for very cheap. For example. Pick up coffee mugs .99cents and as you get closer to the Holiday time. Make up a bunch of chocolate covered pretziles. Buy or make a big tub of hot chocolate. Scoop out the measurement of the hot chocolate and put into clear cellophane bags place inside coffee mug along with some chocolate covered pretzils and wa la. Perfect gift for the neighbors. Make a basket ful for the neighbor with a family and a movie from the 5$ bin at Walmart. You'd be surprised what movies you will find n those bins. Even if each week when you are at the store buy a movie and store away for those gifts. All I am saying is there are ways to prepare now a little at a time and be able to take care of your family along with the other people in your lives that you want to give something too them, just to say Happy Holidays. Taking a few steps in preparing now can help with the stress as December approaches.

Happy Stressors that can cause havoc on someone with Multiple Sclerosis can be going on a vacation, planning a party at the house, or even going to a family reunion. As odd as it sounds. sometimes being overly excited for something can cause stres on the body and trigger MS symptoms yet again. I don't think anyone can have ananswer for this either except to prepare a little. Take a nap if you can before hand, have things prepared and planned for the best you can. Don't over plan and run yourself ragged trying to do too much in a short period of time because that can trigger the fatigue to kick in along with whatever other symptoms decide to pop up.

Again I thought this was the perfect time to talk about how stressors in life good or bad can trigger symptoms. Try your best to prepare and plan for what you can. Obviously there are many things in life that you can not prepare yourself for but these are things you can prepare for.

Getting Magnesium on a Vegetarian Diet | Natural Holistic Health Blog

2009-09-02T19:53:00.000-05:00

You all know I have been talking about Magnesium and the benefits of using it. Here is an article I found that talks about it. I decided since I really don't have much to blog about today I would blog Articles that either I find interesting or based on things I have blogged about in the past. I hope this is helpful to at least some people

Getting Magnesium on a Vegetarian Diet | Natural Holistic Health Blog

Swine Flu Don'ts: Swine Flu Parties, Prevention Mistakes, and More

2009-09-02T19:13:00.001-05:00

I like the whole Swine Flu party idea... Who would think of doing something like that?????

Swine Flu Don'ts: Swine Flu Parties, Prevention Mistakes, and More

MS and Swine Flu!! What Can We Do To Protect Ourselves??

2009-08-31T20:47:00.000-05:00

I was reading an article that said that the death expectancy this year in America could be as high as 90,000 Americans. That doesn't even include other countries. I don't know about you but that scares me. As I currently am laying in bed with body aches, chills, burning eyes and head pain. At this point it doesn't matter if you call it Swine Flu or H1N1. It was known too long before as the Swine flu and no matter how hard they try to change the name... I think it is to late.

Especially now with schools back in session and the weather changing I lay here thinking to myself... Am I at a higher risk for getting this? Will I be one of those 90,000 Americans that die from this. I have Multiple Sclerosis which is an autoimmune disease. I have 3 children in 3 different schools and I work with the public constantly.

I may not have the cleanest house. Hard to do with pets in the house... Kind of like tumbleweeds rolling across the floors now that the animals are shedding. But since being diagnosed with MS, I have become a severe bleacher and disinfectant type of person. I am constantly washing my hands, I quit biting my nails (which I have done for 33 years), I have disinfectant hand sanitizer in my purse and in my room and in my desk at work. I constantly am bleaching the counters and door knobs and phones and faucets. I have my own set of pens that I use so nobody else can touch them. With that said, think of all the things you touch in a day. Money, shopping cart, even the mail. How do you protect yourself from that?

And then there is the downfalls. I have 3 kids!!! They are goood about staying away from me when they are sick... But what Mom will stay away from their sick kids? I still haven't quit smoking and I have MS.

Most of you reading this are in the same predicament. So are you afraid? Are you taking precautions? Will you go get the flu shot and Swine Flu vaccine when it is available? Most people i know that get the flu shot end up with the flu. Odd isn't it? I don't see what the point is if I get the immunizations but my family doesn't. How does that make any sense?

I guess now that they have shocked the United States with this new announcement. I am desperately trying to figure out. How much more at risk are we? With MS does that make our chances even higher and if so how much higher? What more can we do to protect ourselves? How do we get our kids to protect themselves but also to assist with making it safer for us?

"Injections" Poll Of the Week and Updates!!!

2009-08-29T13:35:00.000-05:00

Sorry I haven't been on in a few days. I have been working a lot and getting ready for school to start. As I am sure most of you have been too.

As for Updates... I got the result back from the small intestine test and it came back normal. so of course they want to do the large intestine test. You all know what test that is... The Colonoscopy!! I am not so super happy about this test. Actually the best part was that the nurse said The Dr. was booked up til the end of September beginning of October. That part thrilled me. I have had this test recommended a few times over the years and to tell you the truth I am scared to death of this test. I don't know if it is the prepping part that scares me or the test itself I just get nervous even thinking about it. As I said before I knew that this test was most likely going to happen but of course I was praying that the answer would be found in the small intestine test. I am not sure what the deal is because the nurse called with the results yesterday and said that they would call right back to get this scheduled but then never called back and of course I wasn't going to remind them. With my luck I am going to find out that the Doctor is going to squeeze me in next week. Yet if it was anyone elses luck they would forget to call you back and get away another year without having it done. I know I need this to find out what is wrong and I do want to know and get it fixed but I wish I could just get it fixed without the test.

OH well, enough about the test. Other than that I have been working and of course this week was crazy busy and so the symptoms have been acting up like crazy.

That's all for the updates I guess. Except for I am now on facebook and twitter. I am learning both. The Twitter I use for MS related stuff also however, on Facebook I keep that fun and some about MS. I would love to have you as friends on Facebook. I put a tab on the side of this page to locate me on both. I am really loving some of the games... Farmville and Uno and Farkle so come join me and have some fun.

I have just put the New Poll Of The Week up and this week is going to be questions about the MS injections. I had a lot of people send in questions about them and so I am trying to sum them up in 4 questions. Hopefully they will answer most of the questions asked.

Please take part and I hope we have great turn out as usual. And a thank you from the fellow MS'ers for taking part in this weeks questions to help them understand more about the injections.

Very Interesting - Gastro Problems and Multiple Sclerosis - Update from Appointment

2009-08-21T23:13:00.000-05:00

I want to thank everyone with your concern about my appointment yesterday. I went to the Specialist for the intestinal problems. He does agree that it is the Multiple Sclerosis causing the problems.

He explained it to me.. So I will pass this on to you.
Multiple Sclerosis affects the nervous system (that is all your nerves and how they work or in my case don't work). He said that the intestinal tract is run by many nerves. If the nerves are compromised they will not allow the intestines to work causing constipation or if they are being caused to overwork then you end up with diarrhea.

He said that he is going to start with a test on my small intestine. I go for that tomorrow. The down side is that I had to stop the Magnesium and now my stomach is SUPER bloated. I go for the test at 7:45 tomorrow morning. and then I can start the magnesium except my husband planned a bonfire for tomorrow so I might be in a little bit of trouble. Anyways is that test comes back ok. Then I need to have the wonderful Colonoscopy. He said he would do upper and lower. Reason for this is to see the colon but the upper is to see if the systemic yeast infection is completely gone.

He also explained about the yeast infection and it made much more sense then what the other Doctors said. He explained that obviously we MS'ers have a compromised immune system. The medications we take are immune suppressors and then to add the intestinal problems along with the flare up since January, that also has made my immune system even weaker and slower to respond to fixing what needs to be fixed. So to him it makes a lot of sense how the yeast infection would have happened. He also explained that anytime someone takes steroids that this type of infection can happen MS or Not. So keep that in mind when you have steroid treatments. I have not had steroid treatments since last October and I had a yeast infection immediately following in my mouth that my normal Doctors tried treating but the meds did not help. So this yeast infection has been there since last October. By doing the upper scoping he will be able to tell if the meds I took a few weeks ago was able to kill it all or just make it appear to have disappeared. If it is still there he said I could do one more treatment and that would be enough to kill the rest of it. The only way to know for sure is to do the scoping so he said he would do it all together.

He explained that if the colon is fine and if it is the MS doing this intestinal shut down, that I do have some other options other that feeding tube and the flushing tube. He said it would require surgery but would allow me to have a normal functioning intestines. By cutting out part of the small or large intestine depending on which one is being affected from the MS but leaving enough of the small/large intestine in tact would lessen the amount of intestines that food would have to flow through and still be able to have normal function without having to worry about a bag or tubes. As odd as it seems. I would rather have that surgery then have a tube or two in me and finally be able to have some normalcy in my life.

Now if they actually find something wrong with my intestines through all this testing then all this will change and we or I will have to deal with that and the options I have at that time. For now I am going to have faith in him and believe that most likely it is the MS and believe there is going to be a solution. If not I will deal with that then.

So tomorrow starts the testings and because I haven't been able to take the Magnesium capsules I am very uncomfortable and sick feeling. I will be glad when this test is over. When I come home I will hurry up and start those again and hopefully within a week of being back on those things will be back under control. For those of you wondering.. If the Magnesium capsules work... Why not just keep taking those? The answer is that the doctor said that the quantity of MG I am having to take every night just to have normal functioning is the same as drinking 1-2 bottles of Magnesium Citrate and that is ok for a temporary fix but not healthy to keep doing that long term. I will note that I was not having to take my baclofen barely at all for muscle spasms so ther is truth to what I have been talking about and what they claim about Magnesium. A normal amout is 250mg and if you keep that in mind I have been taking between 750-1500 mg a night.

I will keep you all posted on how this all goes and what more I learn as I go through this process.

Excellent information and resource tools to help you live life with Multiple Sclerosis

2009-08-18T16:17:00.001-05:00

Today, I came home from work and took my meds. As I was laying down waiting for them to kick in so I could get enough relief to take a nap. I started reading the newest edition of
"The Motivator" by MSAA (The Multiple Sclerosis Association of America) I found a lot of good useful information. Since I really don't have much to say about myself (I know...Shocking). I decided to write about useful information and links that you may find interesting or give some direction for you and your loved ones. Anything Highlighted is the link to the direct location of the topic.

The MSAA does have an extensive library and video library for you to use for free. It is quite interesting and a lot of good topics and subjects. This Library covers everything from a good description of MS, Symptoms and Research. It also covers Family changes and challenges. Disability and Leagal information as well as many other topics and discussions.

This subscription also has a section called the" Research Update" describing all the current Treatments for MS along with all the Experimental Drugs that they are currently working on along with Other Therapies they are studying. Interesting Info and answers to common questions about the treatments.

There is a section that is Labeled "Symptom Awareness" This section gives an overview of common symptoms and devices that may make life more suitable for you.

This was fun. I might do this more often with other resources. I hope you find it interesting as well. The "Poll of the Week" is coming very soon.

Oh and under the blog post. I have listed a few of my favorite links to places. I started a "Faces of MS" page on my website and would love for you to feel free to add your face to the wall.

More MS Slogans and Fun Sayings

2009-08-17T16:40:00.001-05:00

Just a Bunch Of MS Slogans and Fun Sayings

2009-08-17T16:37:00.001-05:00

The National MS Society is Looking for Input from YOU!

2009-08-16T21:14:00.002-05:00

We are in the process of gathering information that will help us understand what needs to happen and what needs to change to help people affected by MS keep moving their lives forward. This data will help guide the Society’s direction for the next five years. Thank you for taking a few minutes to complete this confidential survey. Your input is invaluable.

http://www.nationalmssociety.org/about-the-society/strategic-response-survey/index.aspx

Multiple Sclerosis and Quitting Smoking Cont.- Why is it so hard to do? Continued

2009-08-15T12:59:00.004-05:00

Continued from my blog posted earlier!!! You know... My short and sweet one

I think I found the answer...
It just happens that I came across this link.

http://10-ways-to-quit-smoking.xray5.com/difficult-cessation-for-women-research-more-finds-smoking-journal-times/

Multiple Sclerosis and Quitting Smoking - Why is it so hard to do?

2009-08-15T12:10:00.001-05:00

This is going to be short and sweet....

I know that seems impossible coming from me but here goes.

I am still in the Phase 1 of Tara's Quit Smoking Program. Phase 1 is thinking about quitting.

I have been on a roll and then last night happened.... I couldn't fall asleep. I was up til 3:40 this morning so of course I went way over my limit I set for myself which is 10-14 a day.

Every time I would light up a new one I would get mad at myself but continue to smoke it anyways. I even found myself bargaining with myself. You all know what I mean... OK Tara you can smoke another one but when you fall asleep and wake up you can only smoke 10 and under today.

I fell asleep at 3:40 and had to wake up at 7:00 this morning for my son's soccer game (They tied). Anyways on with my story... It is now noon and I think I have smoked 6 this morning and will never make it all day. So I am trying to bargain again.

However, a thought crossed my mind and here it is. Tara you already have been diagnosed with MS and have had thirty something years of bad luck... So maybe my luck is better and smoking really isn't going to cause more problems then I have already had in the past and live with daily???

I know some of you will be mad at my way of thinking and I know it is not the right way to think....But the thought did cross my mind.

Anyways! my point of this is that I know I am going to screw up again today and I don't understand why it has to be so hard to quit. I think I am a strong person in so many ways but I am so weak when it comes to quitting smoking.

That's all for now and I am sure this is going to cause a stir but thought I would pass along my thoughts for the day before I lay down and go to sleep.

I guess it wasn't so short after all!!! LOL

What I have learned from Poll Results and Updates

2009-08-14T23:40:00.005-05:00

Well, the results are in from this last weeks "Polls of the Week" and here is what I learned.

I think the most interesting and depressing poll result is that 38% of the poll takers it took 10+ years to get a diagnosis. I am so sad to hear that and I am also angered that my fellow MS'ers had to wait that long, wondering day to day what was wrong with them, until they got the diagnosis. How horrible. I know MS can be hard to diagnose. However, I know how hard the 6 months were for me and I can't imagine how you felt waiting 10+ years or even 11% of you that had to wait 2+ years.

I don't think I was too surprised at the result of how many Neurologists we all had to go through to find one that either was able to diagnose the MS or found one that you felt comfortable working with. I think it is so important to have a Neurologist that you feel comfortable with because you have to be able to trust them with all of your treatments and basically your future rests in their hands. So I will also add my other input and that is... If you are not comfortable with the Neuro that you are working with find another one or don't feel uncomfortable asking for another opinion.

As for the biggest lifestyle change... Vitamins and Supplements wins the prize. I know that it has taken until last year before I started to turn towards Vitamins and Supplements. I have never been a pill popper or vitamin taker. However, just like all of you... The pill popping happens real quick with MS. I have some very good friends of mine that sell USANA and they paid for my entire family to use the vitamins and supplements. It is not new news to all of you that last year was a very rough year for us. Not only was I still really suffering with the MS being uncontrolable but my youngest son was also dx. with an extremely rare autoimmune disorder that attacked his skin. Long story. but within about a month my middle son was diagnosed with being Anemic and within a few weeks my oldest daughter was in a severe car accident. Anyways long story short. Our very good friends paid for our entire family to take the vitamins and supplements. We all saw drastic changes and improvements in all of us. I know how expensive the USANA is and as much as I appreciated it I felt horrible allowing them to continue buying them for us. We all stopped and some of the problems returned. We have now started to purchase vitamins and supplements at the GNC. Probably not as good as USANA but we are seeing improvements again. I have been keeping you posted on that. Of course right now I am struggling with having to change my diet and cutting down on smoking all at the same time. I do have my appointment this Thursday with the GI doctor and hopefully some problems might be relieved in the near future.

As for Accepting MS.... The poll showed most of us accept having Multiple Sclerosis SOME DAYS. I don't think that is abnormal at all. When you are doing good (which means at least what is a so called good day with MS) it is much easier to accept the disease. When we are having our very bad days or even just a bad day that makes us miss out on doing something we were looking forward to or keeps us stuck in bed. It is very hard to say that we ACCEPT what this disease does to us. This disease has control over us and that is very hard to accept.

I want to thank everyone for participating and I will be posting the new poll of the week in a few days. Still waiting for 1 or 2 more questions. So please feel free to give me a suggestion of something that you would like to know.

UPDATES..... Not much to update you on at the moment. Oh and for those of you wondering about how I am doing on my phases of quitting smoking. I have not picked a date but I have tried making it a point to cut down. I was at a pack a day and I have been staying between 10-14 a day. Of course I have had bad days but I just pick back up again the next day and start all over. I have the appointment on Thursday and will keep you posted on that.

Swollen,Tight and Numb Sensations

2009-08-13T19:47:00.001-05:00

I don't know if it is the weather or just me but the last 2 days I have been waking up with this numb sensation in my fingers. The thing is... It is not just Numb it feels as though they are swollen so big that the skin feels tight and is numb. However, if you look at my fingers they look normal. I had the same sensations the other day but in my ankles and feet. My leg pains have been unbearable. The "Rubberband" sensation I talked about a couple days ago. It has been very difficult to fall asleep. I end up staying up til 1 or 2 in the morning before I take enough medicines to fall asleep and then of course it is difficult to wake up in the morning.

I don't know what the issue is. I know it is the MS but I don't understand these weird sensations and feelings. Those are not normal. NORMAL for me is burning, prickling, and tenderness. Of course then I am still dealing with the swollen stomach due to the intestinal thing. I will say that the Magnesium capsules are helping some but my stomach is swollen as though I am 4 months pregnant. Thank God I am not pregnant. But it sure would make it easier to explain when people see me.

Anyways that is about all for now.

There is still about 2 hours left to vote on the polls for this week. I was hoping to get at least 30 but I think we are at 23 and that is good for me. Thank you all for taking the time to take part in this weeks polls. I will be putting in the new polls in a few days.

6 Hours and 22 votes - Lets see how many more we can get in the next 6 hours

2009-08-13T15:53:00.001-05:00

There are 6 hours left in the Poll of the week. We have 22 voters and I am really hoping to see 30 by the time this ends. The more people that vote the more accurate the polls are for Fellow MS'ers. Please help us reach our goal!!!
Remember to click vote after each question or it doesn't save the answers

Thank You!!!

What Multiple Sclerosis Feels Like

2009-08-12T19:43:00.000-05:00

I posted this a very long time ago but after reading many blogs from Fellow MS'ers I decided to repost this. I love this!!!
I did not write this but it is a great explanation.

When we say we can't do something because we don't feel well, put yourself in our shoes by using the examples of our symptoms below---

What You Can do To Understand Painful Heavy Legs... Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down - how ya' feeling now?

Painful Feet... Put equal or unequal amounts of small pebbles in each shoe then take a walk.

Loss of Feeling in Hands and/or Arms... Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.

Loss of Feeling in Feet and/or Legs... Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.

TN (Trigeminal Neuralgia). ..Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.

Uncontrollable Itching... Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

Tingling... Stick your finger in an electrical socket - preferably wet.

Tight Banded Feeling... Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.

Shots... Fill one of our spare needles with saline solution and give yourself a shot every time we do our shot.

Side Effects From the Shot... Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Trouble Lifting Arms... Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

Spasticity... Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears...Put a bee in each ear and then put a plug in each one...bzzzzzzzzzzzzzzzzzz

Balance and Walking Problems... Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.

Urgently Needing to Pee... We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations... Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.

Pins and Needles... Stab yourself repeatedly with needles all over your body or better yet....Get a large tattoo.

Dizziness (Vertigo)... Get on a gently rocking boat all day and all night and take several walks around the deck.

Fatigue... Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.

Bowel Problems... Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

Burning Feeling... Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead...optional of course.

Intention Tremor... Hook your body to some type of vibrating machine try and move your legs and arms.....hmmm are you feeling a little shaky?

Buzzing Feeling When Bending Our Heads to Our Chest (L'Hermitte's)... Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis)... Smear vaseline on glasses and then wear them to read the newspaper.

Memory Issues... Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn't get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop... Wear one swim fin and take about a 1/2 mile walk.

Depression... Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear... Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don't move. Think about this every night wondering whether something on your body won't work the next day.

Swallowing... Try swallowing the hottest chili pepper you can find.

Heat Intolerance or Feeling Hot When it's Really Not... You are on a nice vacation to Alaska. It's 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms - welcome to our world.

And Finally... After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it's all in your head and that some exercise and counseling is the answer.

(Please note that I didn't write this and don't know who did)

Multiple Sclerosis Updates on Muscle Spasms and Magnesium

2009-08-12T07:36:00.000-05:00

I haven't written any posts lately due to the fact that I have been going crazy trying to purchase all the kids back to school supplies. I love the lists we are given each year. There is always at least 1 item on each of the kids lists that makes you go on a wild goose chase to find it. You know what I am talking about. It could be a special kind of calculator, or a one of a kind color notebook, or even a red pen that are all bought up and nobody carries it at the moment. You go running from town to town to all the different stores and finally you find that one stupid 10cent item and you end up paying 8 dollars for just because you want to stop looking. This year we were on the wild chase for a purple folder and non-perforated notebooks. Just for fun the next time you are at the store see how long it takes you to find those items. And the moment you find it.... Somebody bumrushes you and snatches it up before you get it into your cart.

UPDATES!

The heat has been horrible and of course the burning and prickling is going nuts and so is the leg pains. Not the normal ones it has been this hot, numb, burning and tingling pains from the middle of the thigh to the middle of the calf. You can walk but the middle of the legs feel like rubberbands that are burning you. It is a weird, annoying, and frustrating sensation. I have been working and it has been busy but the minute I get home I lay down, for what normally would be an 1.5 - 2 hour nap, and is now lasting 4-5 hours.

Magnesium and Muscle Spams - I switched to the Magnesium capsules from GNC. They are 400 mg each. I switched because the powdered tablets were difficult for me to swallow. Ihave noticed that if I faithfully take the Magnesium every day my muscle spasms and twitches are reduced considerably. I even went a week without needing my Baclofen 3 times a day. I dropped to 1 time a day. I also had dropped my Lyrica from 3 times a day to 1 -2 times. Now this last week of course as you learned from my post about a week ago. My hormones were at the peak due to my menstrual cycle and I needed more but I am coming to an end so we wil see if things go back to not needing the meds as often. And for those of you with the intestinal problems - The Magnesium capsules are helping with that also. Not perfect but helping. Of course I have my appointment with the specialist next Thursday and we will see what he has to say.

Polls- Just a reminder that thee is only 1 day left to vote on the polls for this week. I am also looking for new poll ideas. I have a couple that have been given to me but am looking for at least 2 more but always looking for future weeks. I know you must have questions you are curious about when it comes to MS. Throw those ideas this way and see how your Fellow MS'ers handle or deal with that issue.

Multiple Sclerosis Polls

2009-08-11T17:07:00.002-05:00

Just a reminder!!!

There are only 2 days left to vote on this weeks "Polls of the week" If you haven't taken part please do.

Also I am looking for feedback from everyone about issues they would like me to add to next weeks Polls of the week. Any questions you might have regarding Multiple Sclerosis or are interested in learning more about. Please send those ideas to me.

Thank You for making this such a success!!!

Multiple Sclerosis (MS)-Topic Overview

2009-08-10T19:30:00.002-05:00

I was on a website that I have found to be very helpful. I found this article and related articles regarding what Multiple Sclerosis is along with other answers to common questions. I just thought I would pass this link and information along to everyone else.

Also.. Just a reminder to take part in the current poll of the week. Only a few days left.

Multiple Sclerosis (MS)-Topic Overview

New Polls & Updates From Past Polls

2009-08-06T22:50:00.000-05:00

Alright, I have just posted the new Poll of the week!

I have to thank everyone for all the participation in last weeks polls. I thought it was very interesting. I also want to thank you for giving me questions to ask for this weeks Polls Of the Week!!

I think it is great that everyone is starting to participate and telling me questions that they particularly would like to know.

I apologize for the past polls not being more open to my fellow MS'ers in other countries. I read through these questions for this week and as far as I can tell they are to the point and should be able to be answered by everyone. If not please let me know and I will try to make changes.

I have to say that the ONE question from last weeks poll that really was a shocker is that 77% believe there won't be a cure for MS in the next 10 years.

Thank you again for keeping these polls going and I can tell you from e-mails and comments I receive. These Polls are helping a lot of people not only with MS but there loved ones to understand more what we go through. Please feel free to send me any suggestions you may have for next weeks polls.

Hormones and Multiple Sclerosis

2009-08-05T22:08:00.003-05:00

I don't know what it is about hormones and my MS symptoms. Sort of like when I was younger, I would have horrible PMS symptoms. As I got older they sort of went away. But I have noticed over the last few years that my MS symptoms really start to act up. A lot of times I have to look at the calendar to determine if I am having an exacerbation/Flare up or if it is my hormones. 9 out of 10 times it is the hormones. At first when I was just diagnosed I kept having this happen and Finally I had called the Neuro and said I have had 3 flare ups in the last three months but they tend to come and go. I am currently having another one. He replied maybe we should try the steroids and see if it doesn't get you back under control.

Well, 35 pounds later and going through steroid withdrawal,my monthly visitor would show up and the symptoms went away. So I started tracking the symptoms. I have regular daily MS symptoms and then 1 week a month I have extreme symptoms but I know now not to call the Dr. I know if I can just wait it out. My monthly visitor will come and symptoms will go away again.

Why is that? Does anyone else go through that?

I actually set the calender on my phone to alert me a week ahead to remind or prepare that the symptoms should be showing up soon.

I know that men don't necessarily have the same monthly visitor but do men have the same issues. For instance do their hormone levels increase every month also? And does it bring on symptoms for them to?

Communication between Doctors?

2009-08-05T07:03:00.003-05:00

If only Doctors would communicate then these past 2 days would have been much easier.
I don't even really know where to start. So here goes....

A week and a half ago I had my appointment from hell

Last Wednesday I went to Urgent care Doctor about my throat - told it was a yeast infection in my throat. I asked how this could happen due to the fact that I hadn't been on steroids or antibiotics? He asked if I use a lot of Mouth wash and I responded yes. He said that mouthwash kills good and bad bacteria and since I already have bowel problems. I need those good bacteria more than ever. - OK, Makes sense.

Sunday I got a call from Urgent Care (I saw them 4 days earlier). She told me the x-ray of my heart showed it was enlarged and to follow up with my Primary Doctor on Monday. - What?????

Monday I wake up and get ready for work. Before going to work I call my Primary Dr. as soon as they open. I asked about my heart and the Nurse says it was NORMAL I said how can that be and why would the Urgent Care Nurse tell me this??? She responds, "I don't know but your Primary Care Doctor wants you to have an HIV Test?" WHAT???Why would she want that??? I have been married for 16 years and have never done anything outside of our marriage???? Does the Doctor know this???

I called the Nero and Urgent care doctor looking for any understanding. My Neuro called back first and said that since I haven't been on steroids and also because most of all of the shots we take are immunosuppressants. Copaxone would not be strong enough for this to happen. She proceeded to say that your primary care doctor is just trying to rule out any other reasons. So, of course I was even more nervous and upset. I Looked online and found a lot about this infection being related to HIV. But I also found one that showed a correlation between yeast infections and Systemic Yeast Infection (An infection basically caused by the bacteria in the bowels). So I called and told the nurse to ask the doctor about that and so I wait for a phone call... and NOTHING!!! I sleep on and off all night long scared to death.

Tuesday morning I finally get a response from the Urgent Care Doctor. I asked him Why did you not act alarmed by the infection but yet my Dr is instantly telling me to go have an HIV test. His answer was... First off you have MS and a suppressed immune system to start with, Your breath smelled of mouthwash and I know already that mouth wash kills the good bacteria along with the bad, and you had already told me that you take probiotics because of the bowel problem. Which was very backed up when you came to visit me. MY reaction was "Oh?" Then he said Remember me asking if you use a lot of mouthwash? and I said well, I use the bleaching pre-brush mouthwash then I brush my teeth and then follow up with Listerine in the morning and at night I brush and use Listerine. And then he said there is your answers why I didn't think anything more. I said why didn't my Doctor know this??

So I e-mail a letter to my doctor, who works and is in the same computer system, as the Urgent Care Doctor, and said what he said.

by 8:15 A.M. My Doctor's nurse calls and says your Dr. has canceled the HIV test and agrees with the Urgent Care Dr. So go make an appointment with the Gastro Doctor and then in 2-3 months we need you to repeat you X-Ray of the heart. I asked why now?? And the nurse says well, your heart was mildly enlarged so we want to have that checked out again"

Can you believe this???

MS and Enlarged Heart. - Correlation?

2009-08-02T14:39:00.001-05:00

So apparently my "Appointment from Hell" Just continues... I get a phone call this afternoon from Urgent Care. I was sleeping due to extreme fatigue. So I called when I woke up and I was expecting them to just do a follow up and instead tells me that from the X-Ray The cardiologist took apparently 4 days to look at it and then the Nurse says your x-ray was compared to past x-rays and your heart is enlarged. "What does that mean?" Well just call your primary Doctor and she will want to have further tests done. Have A great Day.

So the Question of the day is....
Does anyone have an enlarged heart? And if so is it from the MS? My blood pressure has always been low. Is it anything I need to seriously be worried about or just one of those things and don't worry about it.

And the problem is I decided to stop smoking all day today to give my throat time to heal but also cuz it burns like hell but now I really am wanting one.

Multiple Sclerosis, Updates and More Updates

2009-08-01T14:28:00.000-05:00

Where ever do I start?

UPDATE #1 Lisa you either are a mind reader or you have some insight as to how this happened. You posted a comment as to my throat problems and asked if it could be a yeast infection... I quickly responded NO WAY! I sat in agony all week and finally went into Urgent Care because I could not deal with it anymore. I have been so tired and not able to swallow which in return means no food. Well, within about 1 minute the doctor said yep it's a yeast infection and it is going all the way down through the esophagus. I asked how this could happen since I don't have a yeast infection and I am a germ a phob constantly washing my hands. And he responded that the Copaxone is an Immune Suppressor and it can cause a yeast infection. So my question is Linda, How or what would have made you guess that? I am still fighting it and some days it feels better and then the next day it is worse.

Update #2 My kids left Wednesday and are enjoying there vacation with Grandpa and Grandma. I have missed them but have felt so horrible that I am glad they have been gone so I can try to recoup.

Update #3 I have been taking the magnesium 250mg and I have noticed that my serious muscle spasms have dwindled down. So I am doing a test... Yesterday I had no muscle spasms so I did not need any baclofen. I usually take 3 tablets 3 times a day at 10 mg each. Granted I have been on the magnesium pills now about a week and a half. Today is still going strong and at this point no muscle spasms. Yes nerve pain that I take clonazapam and Lyrica but the spasms have really calmed down. I will keep you all posted as to how that goes.

Update #4 We are having a GREAT turn out on the Polls Of The Week and at the same time I/We have learned a lot about the different treatments and different subsidies and plans that are throughout the world. I really appreciate all the input and it has been very informative.

That is all for now. My bed is calling me to take my nap.

Multiple Sclerosis Treatments Different In other Countries/Provinces??

2009-07-30T09:20:00.002-05:00

I have learned something new in the last 24 hours and I want to share it with you.

I never really thought about how other provinces handle the treatment of long-term chronic illnesses. I knew things like Medicines are cheaper in Canada and a lot of people in the US talk about why they can be so much cheaper there and yet we have to pay a fortune.

I posted a blog about the "NEW POLL OF THE WEEK" the other day and I got some interesting feedback from Lori about how programs are different in Canada and also other Countries.

I would love to learn how different countries/provinces handle the treatment of long-term chronic illnesses.

Please help us, that live in the United States, learn how your country/provinces handles your treatments. I will also, from this point, try to include the rest of my fellow MS'ers that live all over the world in my "POLLS OF THE WEEK". For me to do that I have to learn more.

Thank You!!! And Thank You Lori for bringing this to my attention.

Multiple Sclerosis and Muscle Spasms

2009-07-29T17:25:00.000-05:00

If you have Multiple Sclerosis, then you know about Muscle Spasms.

I have severe muscle spasms and I take Baclofen for them. I am over the dosage for treating them. My Neuro last year said I should consider getting the Baclofen Pump. I told him I would not have anything permanently inserted into my body for MS until I absolutely had to.I know that some people find heat works for them and others cold works for them. I have found a few things that help with tolerating my muscle spasms.

Ice Packs - I bought something called TRIO Hot and Cold Wrap. I bought it at Walmart for I think 9 or 10 dollars and it has the pack you keep in the fridge or put in the microwave. But is comes with 3 different Wraps. Different lengths.

I also have my Ice/Water Machine that I use in my bed. - It is a motorized cooler that you put water and ice into it and plug it in and then there is a flat rectangle pad that continuously circulates the cold water and then it forms to the area you put the pad on.

I want to know what you use or have found that works for muscle spasms. Medications used and also other things you have found to treat them?

New Multiple Sclerosis Polls of the Week!!!

2009-07-29T16:13:00.005-05:00

I have posted the New Polls of the Week

As you already know these Polls are very helpful to other MS'ers and Loved ones of MS'ers. They are completely Anonymous.

Please take Part in the Surveys!

Some of these questions have been asked in the past but since I lost all my polls I am asking you to answer again. There are 5 Questions this week

After each answer remember to click vote or it won't save the information
Thank You!
Tara

Multiple Sclerosis and Supplements

2009-07-28T20:16:00.001-05:00

I am very interested in how Supplements help with Multiple Sclerosis and the Symptoms of Multiple Sclerosis. I have learned a few things and I have been taking a few different ones to help with the symptoms.

I am going to be very clear that I AM NOT A DOCTOR NOR HAVE I STUDIED ANYTHING ABOUT SUPPLEMENTS.

I have gone to the GNC store and they have told me a few things I also have a friend that sells USANA Supplements and she has given me a lot of help. Some things have helped and done what they were supposed to do and some I haven't noticed a change. However taking shots everyday for MS, I don't notice a difference but they are supposedly doing something.

I do not eat very healthy stuff and I basically eat 1 meal a day which is bad and I am working on that. I know that there is no way I can get enough of what my body needs in 1 meal a day. I have just found ENSURE!!! It is lactose Free which is good for me. So I have been taking one of those drinks in the morning.

I have been reading a lot about Magnesium Supplements and I thought I would share.

I have already spilled the beans that I have Intestinal Shut Down problems. I learned a little about this. People with either constipation or constant diarrhea is usually because of an imbalance of Calcium and Magnesium. For those with problems of Diarrhea usually have to much calcium and not a balanced amount of Magnesium. On the other hand, people Constipation or in my case Intestinal Shut Down, have a higher amount of Calcium and not enough Magnesium. Hence Magnesium Citrate as a colon cleanser. I know I have talked about the things I have tried and what has helped and what hasn't. So here is my opinion. I have found that by adding Magnesium Supplements helps with my problem. I haven't been on them long enough to know if it will continue but I will keep you updated.

On the bottle it also says "HELPS NERVE AND MUSCLE FUNCTION"
Here is what I am finding... I am having lesser muscle spasms and the burning sensations are slowly decreasing. I still have bad days but, hey, a bad day here and there isn't too bad. I have also found that it has been relaxing the muscles slowly.

I also have found that it helps with depression and concentration along with a lot of other benefits. You can see the benefits it has by simply Googling Magnesium Benefits Also you can research the benefits of Magnesium and Constipation and also Magnesium and Multiple Sclerosis

A Few other Supplements I take daily!

I take CoQ10 I was told it was good for the cells and energy - I haven't taken long enough to notice a change. I heard it takes a couple months

I take Flax seed w/ Omega - 3 Fatty Acids - I take the flaxseed for the bowel problems and honestly the Omega-3 just comes with it. I know that it is good for the heart.

Valerain Root - To help me fall asleep - It doesn't knock me out but within about a half hour to an hour I fall asleep and when I wake up in the morning I notice I slept very good. I do not take these every night but when I am having trouble falling asleep.

I do take the Probiotic Pearls - I take the Pearls only because they come in Lactose free. But Probiotics are an excellent source for helping your intestines. I was told about these by a nurse that was at my house giving me my steroid treatment. She said that in her opinion it is very beneficial for anyone that is sick or taking steroids.

I have never been a vitamin person but I was never a medicine taker either PRE-MS but I guess things change. I have found that I struggle with regular multi-vitamins due to the iron.

Anyways, that is what I have learned and been trying. Now, of course ironically it isn't helping me with this sickness. Who knows maybe they are and I would be worse if I wasn't taking these.

In closing...
If I can find natural alternatives that really do help, I would rather take those than all the drugs that the Doctors tell me to take.

Let me know what you think and if you have any to add please feel free to post away. On this one I don't care how long the posts are. I think it is interesting and helpful to all.

I couldn't figure out how else to get this link posted... But Lisa recommended a great blog site and I checked it out and found that Anne at http://vitaminsmineralssupplementsdiets-ohmy.blogspot.com/
Has a Post about Magnesium so here is the link to that blog. http://vitaminsmineralssupplementsdiets-ohmy.blogspot.com/2009/06/8-magnesium-62909.html

Multiple Sclerosis Versus Immune System

2009-07-28T16:00:00.003-05:00

Multiple Sclerosis Versus Immune System????
OK... So I woke up from a nap on Friday And my vision was bad along with my swallowing. I know these can be normal MS symptoms. Not normal for me but in general. My vision stayed bad until Monday. On Monday my vision started to get better but my throat felt as though I had a rock in it. In the morning my eyes were puffy and 2 white spots on the back of my throat on right side. As the day progressed I was feeling worse. I left work (because my Boss is Awesome and understanding) and I went to the lab to have my blood work done that my Doctor had asked for after my physical last week. Ya know the physical from hell. (If you don't know about it go back and read about it. I told them at the lab about my throat and they called my Doctor to see if they should still take the blood work. She said yes and she said that the blood work would show what was going on if not she was going to send me to an Ophthalmologist and to the Neurologist for a fun round of steroids (which I would have fought that idea)

Then they called and said my Doctor wanted me to go back and have a throat culture just to rule out Step. I went back and had that done. I came home changed into my pj's and then another call that my blood work clotted up to fast and I needed to go back and have that done because it was the blood work for white and red cell count. So, I got dressed again had my daughter drive me back and had that done. By this time I thought for sure the throat culture was going to come back positive.

Results:
Liver enzyme test - Normal ( WOO HOO first time in 3 years that it was normal)

Throat culture - Normal

Blood work came back this morning and - Normal

How can this be? I have white spots all over my throat and I can't even swallow.
Last week when I went to my appointment from hell. I was running a temp. yet today sick as hell and no temp but having hot flashes and can barely stay awake but I have to because if I don't swallow at least every 10 seconds then it gets even worse. As today has gone on I now what sores in the corners of my mouth.

So the question is.... Can our white cell count be lower than normal because of our autoimmune disease and then when we get sick it elevates but only to what is considered normal???

Just like a normal temperature is 98.6 degrees but for me it is 97.6 degrees and when I went to my appointment from hell last week it was 99.0 degrees so the doctors didn't think anything of it....

I am so frustrated. My kids leave tomorrow and I actually am handling it ok at least for the moment maybe because I am so sick I could care less but I am not stressing or anything and trying to look forward to a some alone time. But now I am thinking I am going to be sick the whole time.

Has anyone ever had anything like this happen or have any advice???
How can this happen?
Could it be true what I am thinking about our white count be lower than normal and then get higher when sick but only to what Doctors think is normal???

Multiple Sclerosis Game!

2009-07-26T12:51:00.004-05:00

OK. so lets take the initials MS and see how many names we can come up with.

MS = Multiple Symptoms!!
MS= Muscle Spasms!!

And I am being nice since I am really having a bad day with MS. I could come up with some really bad ones but you probably wouldn't read any more of my blogs ever. Come on I know this is kind of stupid but it can be fun to see how many we can come up with. And YES you can put more than one answer.

Today has been a big blogger day for me so feel free to click on my title and read my other Blogs of the day.

Still looking for more topics for this weeks POLLS! Please send me some more ideas!!!

Coffee Break Update...

2009-07-26T10:18:00.002-05:00

I got the picture of the hummingbird. It took 2 hours for me to get the picture. Go to original Coffee Break Blog and you can see it.

Still looking for more topics for this weeks POLLS! Please send me some more ideas!!!

Coffee Break!!!

2009-07-26T09:53:00.008-05:00

OH Cool! You can Click on the pictures and it will enlarge so you can see the "Special Garden" better

It is a beautiful day out side. I am bringing you into one of my "Special Garden" areas to write today's Blog. I am hoping a hummingbird might stop by for me to take a picture of that (Ssshhhh I can hear them flying over me but they may not be comfortable landing when I am this close)Did you know that as far as Hummingbirds go..As time goes on they will get used to you and land and eat even if you were right underneath them). This is a new Garden area or "Special Area" my Dad and my Son designed and made for me about 2 weeks ago. Ooops I just missed one. The hummingbird came to eat and as I moved to get the camera it flew away. So they may not be that scared of me. However one of my dogs, Gunner, is out here with me and keeps running after each and every bird noise he hears. He is a gorgeous dog but kind of one of those "Duh" kind of dogs. This garden is going to be beautiful next year when we get the rest of the ferns and hostas planted around the one and a half sides where there is no sun and then beautiful flowers on the sunny side. Right now it is just started and we can't start dividing the hostas and ferns until Fall. So, next year when I am sitting out here I will have to take new pictures for you.

So as I sit here waiting for the hummingbird to fly over. My thoughts are flowing so this could be one of those blog days. It's sort of weird. My Dad and son put this garden in for me to have a place to relax and yet I sit here and my brain is going of a hundred things. (Damn just missed two HB's) Anyways, back to my brain.

Take Yoga for instance. I do the breathing and focusing on an object and then you are supposed to be able to focus and clear your brain. Well, my brain starts thinking about the dishes I need to do, what I need from the store, something that I forgot to do or needs done at work, the garage sale I want to do, the scrapbooking that I need to get going on, Are the fish biting today, which bills I forgot to pay, what bird is making that horrible chirping sound, why are my tomatoes not turning red yet in the garden, I really need to wash all the bedding off all 5 beds, and that's just for starters. So I think to myself how do people really clear their heads and focus on a spot on the wall???

I can never just clear my brain. Does that mean I am ADD or does that just mean I have a lot of shit on my mind?

I have been sitting out here for 2 hours and can't seem to get a picture of the Hummingbirds. They are here, I swear... But anytime I move they leave. Soon they won't be afraid and I will be able to get the picture. Next Coffee Break will be in my other little hidden garden that my Mom and Dad made for me a few weeks ago while I was sleeping. Never mind I just got the picture...

So, anyways thanks for having coffee with me in my "Special Garden"!

Still looking for more topics for this weeks POLLS! Please send me some more ideas!!!

New MS Symptoms

2009-07-26T09:28:00.004-05:00

I came home from work early yesterday because it was slow and my boss/friend new I have been having troubles again so he wanted to give me a break.

I came home and took a nap and when I woke up my vision was very messed up. I couldn't focus on anything especially words. I didn't realize how bad it was until I went to take my fish "Miss Charlie Pooh" down stairs to clean her tank. She is a Beta fish so she is in a very small tank. I was walking and not able to focus on the door and the floor, tripped. T plastic tank she is in broke and shattered every where. I of course let all the water and tank go as I tried very hard to find her. I saw something move so I knew it was her. I picked her up and as quickly as I could... I made my way down the hall and down the stairs to find some water to put her in. Luckily we have well water so I don't have to worry about chlorine. I got her safely in a cup and had to put her in the bathroom so the cats couldn't get her. My daughter and her boyfriend just made it home and oddly enough they went and bought a hamster. Their BABY!!! Glad its a hamster and not a real baby! Anyways they took me to Walmart and we found a new tank. Came home and got it ready and then put her in. Miss Charlie Pooh is a happy fish again.

Anyways the other symptom that started yesterday is swallowing problems. Weird but true. 3 different times I would swallow or try drinking..I couldn't swallow correctly and then started choking. One time with a mouth full of lemonade.

I went to bed and woke up this morning and my vision is still not all the way right but not as bad (Still blurry) but I went downstairs to pour myself some coffee and when I started drinking...Again trouble swallowing choked and coffee went all over my shirt. After a little while I tried drinking again and now it is fine. It is like last night... Comes and goes.

Now here is the thing... I am not stressed (As for my kids leaving this week. I am just pretending they are going to Wisconsin (driving)for a week w/ their Grandparents. Since I am not taking them to the "place" to get on a "thing" to take them up high into the sky and to a State far away.) Then I am not stressing about it. Work is going good so no stress there, bills are sort of paid so no stress there. It has not been hot so no reason for problems. I don't understandit. How can I be having very bad muscle spasms, leg numbness and pain, vision problems, bowel problems and now swallowing problems? There shouldn't be a reason for this crap to be happening.

I know that I have MS... So for those of you thinking Duh...you have MS!! I realize that but I have never ever had my MS act up for NO reason at all. It has always been triggered by something. Heat, Cold, Stress, Sick, Overdoing it and I think that sums it up. So why is it acting up all on it's own????

I have been taking vitamins, taking my medications, taking my shots, not working many hours and taking naps... So why is this happening???

Still looking for more topics for this weeks POLLS! Please send me some more ideas!!!

Poll Ideas Wanted for this Weeks Poll of the Week

2009-07-25T16:45:00.002-05:00

I am looking for suggestions for this weeks Poll of the week. Please feel free to suggest some Poll Ideas. I don't expect anyone to respond directly to this poll. So feel free to do it anonymously or respond to the poll and tell me not to post and I will just keep a list of ideas and then on Monday I will take those ideas and start the new poll of the week. What questions do you have about MS or Information you might want to know about MS and how fellow MS'ers handle that question. This is also open for Loved ones of MS'ers. If you have questions Please feel free to ask.

Thank You!
Tara

Attitude

2009-07-25T12:51:00.002-05:00

I Read this poem and found it to be inspiring so I wanted to share it with you!!!

Attitude

by Charles Swindoll

The longer I live, the more I realize the impact of attitude on life. Attitude to me is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think, say or do. It is more important than appearance, gift, or skill. It will make or break a company...a church...a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... The only thing we can do is play on the string we have, and that is our attitude.

I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you... we are in charge of our attitudes.

Attitude is something I feel helps all of us get through LIFE WITH MULTIPLE SCLEROSIS

Update, MS Polls, and Life In General

2009-07-23T21:55:00.002-05:00

Just an update on how the week is going! I feel like a tornado is in my head!!!

The MS has been flaring a bit. I am really struggling with the burning sensations,fatigue and the muscle spasms. The spasms have been more in my back then in my legs this time but spasms are spasms. I am wondering if it has been from the roller coaster ride of emotions this week or just because the MS wants to cause me troubles.

As for the stress this week...
I have tried not to think about the Doctors appointment too much. Every once in awhile it sneaks back into my head but I am denying what she had to say. That seems to be the only way I can cope with the news she dropped on me or the bomb... No Difference really!! I think everyone has to find ways to cope with MS. There are some parts you can accept or at least try to accept and then there are things you just can't do anything about. But in this case I find that news about what most likely will happen or could happen or even is happening...I tend to go into the denial phase. The denial phase is my coping mechanism to get me through that moment in time. I am not stupid. I know that what she said is probably true but I need to take it in slowly for me to accept it. Also by denying it gives me strength to fight it. I have said in the past and for those of you who might possibly follow this blog probably have gotten to know the fact that If you tell me something is going to happen and I don't want it to then I will do whatever it takes to prove you wrong. I guess it is the stubborn side of me.

As for the kids leaving a week from today...but who's counting??? I am trying very hard to act as if it is not happening. I can not think about it until that day. So next Wednesday will probably not be the greatest but so far I have managed to get through the week not thinking too much about it. Oddly...the kids aren't even talking about it too much. I think they probably have a sense of how I feel even though I try not to let it on.

I am just sending out a reminder to everyone to take part in the polls. Everyone that takes part helps out so many others. I am not even sure how many days are left for this weeks polls but I don't think there are many. Please take the time to help out others and also to help inform others that don't have MS. These Polls are helpful to all.

A New Day! A New Attitude!!

2009-07-22T06:56:00.001-05:00

Yesterday was a huge sucker punch in the gut. But I am just waking up and trying to look at yesterday a little different. I know what the Dr. said is a reality for all of us MS'ers not just myself. I left there yesterday wanting to give up all hope. Thanks to some friendly advice from fellow MS'ers and my Mom. I have chosen to remember what I felt like on Monday. Which was sore from the canoe trip, sad and scared about my kids leaving but most of all feeling good about my MS. I may be progressing in their eyes but I am still working and I am still getting out when I can and doing some gardening and enjoying my garden spaces. For goodness sakes I sat in a canoe for almost 9 hours on Saturday. My life is not over nor is it near being over like the picture she painted for me yesterday.

I will continue to do whatever I can for my intestinal shut down and when that stops working I will continue to try anything I can before a tube ever needs to be inserted. But if that day comes. I will be sad but that too does not mean my life is over. There are many people in this world that have a feeding tube and they make it work. As for my legs... I will continue to Wii and do what I can. I was told last year that a wheelchair would be inevitable for me in the future. I thought that was a huge sucker punch then. But it's been a year since that comment has been made and I am still walking. (yes there are times I need my cane or wish I had a wheelchair for longer walking distances) but I am still walking.

My feeling the day the Dr. told me about the having to be in a wheelchair eventually (because of where the MS is doing the majority of its attacking) was "I WILL PROVE YOU WRONG". Now I am not in denial like the Doctors think. I know that these things will probably happen but if you take what the Doctor's say and truely believe what they are telling you. Then most of us would be laying in bed waiting for the inevitable. We would give up.

MY Conclusion:
We can not give up "HOPE"! I know I have said it before. Doctors don't know everything. We know ourselves better than they do so.... Please take the information from yesterday's blog and use that as an example (or prepare) for what you may hear someday at an appointment. But Most of all remember that they are so close to finding a CURE for this Sucky Disease. Don't ever give up HOPE! Yes you can be sad or angry or even scared about this disease But you need to be STRONG! In all honesty you are the only one that can fight what is happening to your body.

Dr Appointment Didn't go as Well as I Had Hoped For

2009-07-21T16:01:00.001-05:00

I went for my appointment with my regular Dr. and it didn't go as well as I had hoped for. Why do Dr's have to be so brutally honest? I had my exam and we talked about the symptoms that I have had. And then we did some talking. Actually She talked and I cried.

I may not like what she had to say but I did find out some interesting stuff about MS. So I will share with you my appointment. ( You know me...I let the personal info out to help others)

First off she wanted me to know that 80% of MS'ers do not have or will not progress to the progressive phase. Good News! Except she does not believe I am one of those 80%. She is seeing progression. She did say that some of my original symptoms when first diagnosed are not as bad. However, there are many more symptoms that I have gained and also have progressed. She did explain that taking the shots are extremely important. They are the only thing I have going for me to help with the exacerbations and permanent damage. As for medications... Medications that we are given to help treat symptoms of MS are not always going to work nor will they take the symptoms away. If they do take the symptoms away or lessen the symptoms this most times is only going to be temporary. I am at the highest dosages for almost all my medications. Not Good! She explained that she has reached her ability to help with any more medications for my symptoms. She did say that the Neurologist might have a few more up his sleeve but probably not much more. As for my Intestinal Shut Down... I explained that with using the natural products I have been able to keep things going and also taking out the dairy seemed to help some. I asked about lactose intolerance. Her answer was that MS can cause lactose intolerance along with other reasons for intestinal shut down. Right now if it helps to take the dairy out of my system and take the natural products then keep doing it. But in reality, There will come a time that the lactose intolerance will lead to another intolerance and then another and then another. Taking the natural products if they help is a good thing but eventually they may not help either. She said that when I went to the Gastro Doctor he was stumped as well and that I need to prepare myself that there could come a day that I may need to have a tube inserted to feed myself so that my body will absorb and release what is needed. She did say that my balance has improved some and I told her about the Wii and she was happy about that however, she followed up with the fact that my strength tests were worse. You all know what I mean by strength tests. Resist as I pull or push. I could tell already that I didn't do so hot with that. She also agreed with what the Neurologist had told me a year ago and that within time I will probably end up in a wheel chair. By this point as you can imagine I was a happy person.

Then came the real kicker!!! She said that I have accepted some parts of being diagnosed with MS but I really haven't accepted the important parts of being diagnosed with MS. She called it Denial. I like to think that the Doctors are wrong and I will beat this and I will live a long life with a lot of pains. She said "Tara, I think you need to go for counseling because the reality of this disease is that it is a crippling and debilitating disease and can be fatal" Ok. This is when the tears turned into full blown crying. She also said that going to support groups is good. I told her I don't like them because they are to real to me. I don't want to see the possibilities of what this stupid disease can do. Her answer was then that is where you are in denial. You need to see what can happen so you can be prepared.

I quickly responded. I don't want to see what the possibilities are and I don't want to prepare for any of this. I want you Doctors to tell me that this is a nightmare or a mistake or even tell me yes, you have MS but we will be able to control it. And the answer she gave is... None of us Doctors can tell you this. She told me that she just buried her cousin age 42 last year from MS. She had it for 20 years and the last 10 years she was in a wheel chair and then became worse and worse. Ok. So at this point I am crying very hard and responded with "Why do Doctors say things like this? If you don't give encouragement or signs of hope then what do I have to hold on to? To keep me fighting and believing that I can win this and live the life I have planned. I am not stupid, I know that there are going to be changes that I will have to live with whether I like them or not.

She is changing some of my medications and is going to do a complete blood work up which I have to go in and have done very soon. She said that will give some info and then I need to go see the Neuro and get my yearly MRI test. I am just so excited about all this.

But I need to point out one more thing she told me. I explained to her that I did not call the Neuro the last exacerbation because I did not want to have the steroid treatment. Her answer to this was... "Tara, by not going through the steroid treatment can actually help progress the MS. Steroid treatments are to shut down the immune system causing less permanent damage and destruction. By choosing not to do the steroids I am choosing to let the exacerbation last longer and more damage to be done." In her opinion she said no matter what if you are having an exacerbation I should always call and let the Neuro know and if Steroids are recommended then it is better for you to do them. Causing less damage. Less Damage = Less progression.

And I will admit that she did get on me this time about the smoking. She said "Tara, smoking is also helping this disease to progress". I asked her if she had been reading my blogs? And of course I laughed through my tears and she said no. I explained and she said it is just the truth. I told her that I was in my phase 1 "Thinking Phase" and I will work towards "Phase 2" She said she wants to see me in 2-3 months and hopes I am in phase 2-3 by then.

She also said that she knows that I push myself to the limit most times and she expressed that when you have MS. You need to listen more closely to your body. If it needs sleep then sleep, If it needs to have resting times then do it, and if it says "STOP" then stop.

I will go have my blood work done in the next few days and we will see what that comes back like. I will continue to post how my next few appointments go and also my blood work.

Stressed, Sad, Sore and Updates

2009-07-19T21:35:00.001-05:00

Wow! What a 24 hour period can do to you.

I will start with the updates...
Canoe trip was fun. Very long and tiring. What should have taken 4-5 hours took 8.5 hours. I believe I was the only completely sober person on the trip. "Interesting" is the word I will go with. I am so sore and worn out today. I am not sore from paddling because when you tie 7 canoes together and sit on rocks for 2 hours without noticing you have not moved then obviously we were not working very hard. We watched canoes go past us during this time so of course it appeared we were floating along. Once we realized the situation we all started paddling. However by this time most were quite drunk and so we were paddling in all different directions which led us into one giant circle. I think this was about the time that everyone was worn out again from the 20 minutes of paddling. We spent the next few hours going from one side of the river to the next and repeating it over and over again. At about 4:00 PM I thought we had to be close to the end. Within a few minutes I was informed we had only gone 6 of the 12 miles. So, I think it was about this time I finally decided that I had to take my medicines. I could not last any longer. Sitting in a canoe for 5 hours with major muscle spasms is very hard and sitting in a canoe makes the butt very sore. Did I tell you that we got on the boats at 11:00 AM. We finally arrived at the destination at 7:45 PM.

This morning I woke up sore all over. I made it out of bed and poured a cup of coffee and then strapped ice packs to me and went back to bed. I wish I could have stayed sleeping all day but My Hubby's family was coming over to our house to celebrate my son's birthday. I can't believe my baby is 10. He is about the size of a 6 year old but he is 10. So, I am back in bed with ice packs all over me.

Now to the stressed and sad part. About an hour ago I got a phone call from my Dad that lives in Florida. He has been asking me for a few months now for our family to come and see him. I keep telling him that I can't plan that at this point because first of all at that point I was in an exacerbation and he doesn't really get the fact that I have symptoms daily that don't allow me to plan all day long adventures for 7 days straight. 1 day of fun leads me to 3 days of sleeping and recouping. So an hour ago he called and asked again. I told him that with work right now it is to crazy for me to take a week off. So he then called me back and said that he was holding 3 tickets online and wanted my consent for my 3 kids to leave next Wednesday to go spend a week with him. 2 of my kids were sitting right next to me when he called back and could hear the conversation. They started jumping up and down when my heart was sinking into my stomach. Then my youngest son joined in and said he wouldn't have any trouble getting on the plane and go to Florida.

Ever since 9/11 I have had a fear of flying. Not just a little fear but a fear so bad that my Doctor had to put me on Xanax just to get on the plane to be with my Dad when he had his heart attack. I am scared and sick to my stomach. I am already having panic attacks all awhile my kids are jumping for joy. I also have a very hard time leaving my kids. Saying goodbye at the airport is horrible. I had to do this a few years ago with my 2 older kids and I cried until I could no longer see the plane in the clouds. Now it is all 3 of them and I am so sad and scared.

Why does my Dad do this to me. He knows how I feel but he tries to say that "I should look at it as a break from my kids. That I should enjoy it. Spend time with my Husband". He doesn't understand that my husband works second shift. I leave in the morning before he wakes up and I come home after is gone and I am asleep before he gets home. So I will be alone. Once my kids arrive in Florida I am fine but just getting them on the plane is so hard for me. I am already crying just thinking about it right now.

The stress of this is causing me burning sensations right now. I know I could say no and be over with this but my kids shouldn't have to suffer because of my fears but everyday that passes is going to be harder and harder for me.

I hate this feeling and I am dreading the next week and a half.

Oh did I say that I have to go see my Doctor on Tuesday? One more thing I am dreading. Nothing ever goes good for me when I go to the Doctor. So I am really really dreading this next week and a half

Multiple Sclerosis New Poll of the Week

2009-07-18T07:39:00.003-05:00

This week is a Pish Posh of questions for the Poll of the Week!

I went through the topics that I have discussed and came up with the current Poll!

Please take the time to participate and sen me suggestions for future polls!!!

There are 4 questions in this weeks polls!!!

Tara

MS and Intestinal Problems

2009-07-17T22:40:00.001-05:00

Let me start by saying this is a very personal Blog. My hope is to help at least one other person that suffers from these problems.

I know that MS can cause intestinal problems. It can cause constipation or incontinence. For me it causes complete intestinal shut down.I don't think this is very common but the others are more common.

Intestinal shut down is when you intestines stop working all together. The stomach bloats out and can appear as though you are 9 months pregnant. Actually there have been times I look like I am 24 months pregnant. The Doctors don't even know what to do. The specialist put me on the most powerful medications last year and they didn't even work. I could take stool softeners, laxatives, enemas and mineral oil all at the same time and nothing would kick start the intestines.

I know this is very personal but something I think I should share to help anyone else out there that may have some of the same problems whether it be constipation or complete shut down.

Over the last year I have found a few things that work. And you will be happy to know that it is all natural stuff. I do have to say that one time one thing might work and the next time it won't and you have to try something else. So this list comes in handy.

Freshly ground Flax Seed - Add a few teaspoons or in my case Tablespoons to yogurt or a smoothie and it helps. I have been trying the flaxseed capsules and I will let yo know how those work.

This last 6 months I have had a lot of troubles and have found a few more things since the Flax Seed alone didn't work.

1) Natural Calm - a newer product at GNC Store. It is about 25$ but well worth it. At night take a couple tsp in warm water and drink like a tea. CAUTION... It fizzes up at first so only add a little warm/hot water let it fizz and then add some more water. This also has helped a lot with the leg cramps at night. Mine is lemon raspberry. Very tangy tasting.

2) Smooth Move Tea - I have found this at the GNC store. $5.00 for a box of 16 tea bags. Try using one bag at night if it doesn't work enough then use two bags. I suggest using at night and then in the morning you should be good to go.

3) This is kind of weird sounding but it is called Turkey Rhubarb. All Natural product I buy from Innovative Medicine I take this at night also. This works very good also but sometimes can cause cramping. But when you are desperate....It is well worth it. This comes in a capsule for those of you that may not like tea this might be an option for you.

4)Probiotic Acidophilus Pearls- These are very important to take everyday. It doesn't have to be the pearls. It can be just a regular probiotic. I take the pearls because they are lactose free and I have found that if I eat anything with lactose it also triggers my stomach to act up.

And most of all drink lots of water.

So far between all these options, when my stomach starts acting up or should I say "slows down" These are what I have found that works. I will continue to add to this list.

I need to be very clear.. I do not take all of these every night together. I take the probiotic and flax seed everyday in the morning but the other 3 products...I pick one and see if it works if not then the next day I try another one. My intestines are stubborn and will work for one of these products but you never know which one it will work for each time.

I hope this helps at least one person.

Canoe Trip How to Plan For It

2009-07-17T21:51:00.002-05:00

Tomorrow I am going on a canoe trip with a bunch of friends. I am very excited but a few weeks ago I was dreading it. Hot Summer day on a canoe was scaring me about what symptoms it would trigger for me.

Tomorrow oddly enough is going to be only 70 degrees. I have a feeling the other friends are dreading it more than me. They like the hot days to be in the sun. I am excited because 70 degrees is perfect for me.

I am still planning and preparing for me which means "MS PLANNING". I am taking lots of water. Everyone else will be drinking beer but I will fill up with the water. I take packets of Country Time Lemonade to add to it. I am bringing a bunch of fruit to munch on like fresh strawberries and fresh pineapple and a turkey sandwich. The others probably won't eat because...they will be drinking. I do have chips and Chex Mix also for the hubby to munch on. I am bringing ice packs which will also help keep the food in the cooler cold. And I will be taking my "boob coolers" also. I have talked about them in the past and they really do help a lot. I am packing up my meds in a zip lock bag so they can't get wet. I will be bringing a beach towel but also a hand towel that I can wet down if need be and put on my neck and shoulders which is where I feel the burning sensations the most. Of course I will also remember the sunscreen and a baseball cap.

It is supposed to be the 4 hour canoe trip which based on the river could be 3 hours or 8 hours. So I need to be prepared for anything.

I will let you know how I do.

Clinical Trials for Multiple Sclerosis

2009-07-17T07:03:00.001-05:00

After this weeks botched polls about insurance and MS. I decided to write about a few different topics. This one will be about Clinical Trials for Multiple Sclerosis.

1) Clinical trials for Multiple Sclerosis:
I know I have thought about participating in these trials and for whatever reason I have not looked into these too much. Clinical trials are going on all over the world. According to The National Multiple Sclerosis Society "Clinical trials help to determine if a drug is safe and effective for people with MS. People with MS who are willing to volunteer in these studies make it possible for all of us to look forward to new and better therapies"

This information is from the National Multiple Sclerosis Society

Clinical Trial BasicsThe process is complicated. Many factors are involved in making sure that a study is conducted properly and that the results are valid. The U.S. Food and Drug Administration requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS:

Phase I – The first step is to determine safety. In a small number of healthy volunteers or persons with MS, the investigators determine how the human body reacts to the therapy.
Phase II – If the therapy proves to be safe, studies begin to determine the effectiveness of the drug in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is "controlled"—that is, the drug is compared with the standard treatment, or an inactive placebo.
Phase III – If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. These multi-center studies can span several years and several countries.
Following FDA approval, post-marketing studies (phase IV) might be conducted to assess long-term safety and effectiveness.

This may be something you are interested in doing for your own perosnal reasons but also if you don't have insurance or troubles with insurance.

The following link will lead you to the Clinical trials in your area and also common questions and answers to Clinical Trials.

http://www.nationalmssociety.org/research/clinical-trials/participate-in-clinical-trials/index.aspx

And for those few of you that are still reading this...

I AM DOING MY OWN TRIAL CALLED THE
QUITTING SMOKING PHASE TRIAL

I am still in the PHASE 1 "THINKING PHASE". I will keep you posted as I move to
PHASE 2 - "Setting the Date"

Quitting Smoking Part 1

2009-07-15T21:22:00.002-05:00

So now I have read articles about how smoking progresses Multiple Sclerosis. I also have posted a blog about my reluctance to quitting smoking. I have had feedback that has once again encouraged me to "THINK" about quitting. But how do you go about it??

When you have smoked for 20 something years and you really are reluctant to quit. I would guess the first stage is to think about it and to push yourself to make the decision to do it.

I will admit that I have been tossing the idea around for awhile but am not quite there yet. Just thinking about it stresses me out. I don't want to take more pills to quit and the patch is just adding another drug into your system and I seriously don't want to gain any more weight when I am working towards losing weight. So the question is... Where do I go from here???

I know there are others out there with MS that feel the same way I do but I/We need help figuring out how to get to the next step.

So I am going to work on convincing myself into wanting to do it. And in the meantime I am open to any suggestions as to how to go about it. But I am also open to getting others to join in with me and doing this together.

Smoking and MS????

2009-07-14T22:05:00.000-05:00

I have been reading blogs outside of my normal favorite Bloggers and everything I have been reading has been about how Smoking can make Multiple Sclerosis Progress more rapidly. Is this really true????

I am coming out of the closet and admitting that I am a smoker and of course as you all know... I have MS.

I keep reading these thinking to myself..Self...You should quit smoking... Maybe your MS will slow down or heck maybe go away???

And then I think to myself... Self... If this was really true your Doctors would be really enforcing the issue and they aren't. My Doctors ask... Tara are you still smoking and I say... YES... And they say "I know how much stress you have been under we will not even worry about it at this point but you really need to cut down on the CAFFEINE!!!

What about Alcohol and MS?
What about the Sun and MS?
What about pets and MS?
What about the economy and MS?

The list can go on and on... As for Smoking you have one study that says smoking cigarettes is bad. But... Smoking Marijuana is good. Illegal but good for MS. Give me a break. There is a study for everything.

There probably is a study that says if you were 2 and picked your nose and god for bid ate it (yuck) that you probably got MS because of that.

Ok Government, and People who do these studies.... We know smoking is bad for us but so is an over abundance of drugs but the doctors are filling us MS'ers up with them... Which leads me to the next point.... When I watch commercials for all these drugs for different ailments. Have you heard all the problems they can cause. The list of problems is longer then the commercial.

1 Day Left for This Weeks Poll

2009-07-14T21:04:00.003-05:00

There is 1 day left to participate in this weeks polls.

This week the polls are about Medical Insurance and Multiple Sclerosis.

Everyone with MS has had to deal with Insurance Issues at some point in time or another. It may be the Doctor you are forced to see or the treatments you are or aren't able to take because of the insurance. Please partake in this weeks polls.

Thank You Everyone that has participated and going to participate so that it helps other MS'ers and ourselves get insight on INSURANCE issues.

Tara

Accepting Help is a Part of Accepting MS

2009-07-13T22:02:00.005-05:00

Accepting help from others is a very hard thing for me to do. In my brain I remember my self being able to handle and do things for myself. I wouldn't ask for help for anything. I don't know if it is/ was pride or just being stubborn.

Then came MS. I still wouldn't ask for help. My family and close friends tried to help. They would call all the time and sometimes even just show up. I was thankful but probably didn't show it because by excepting the help made me feel like I wasn't in control. Truthfully I wasn't in control and haven't been since August of 2006.

Giving up control has been the hardest part of the "Acceptance" part of Multiple Sclerosis. My brain and my body are like two different people. I still like to feel like I am in control but I know that I am not.

I walk around the house and yard and realize I don't have the ability to handle everything like I used to. I look at the yard and gardening, something I love to do, but weeds are everywhere. I go into the house and every room needs decluttered and cleaned and work done to it. That's when I get depressed.

The other day a very good friend of mine showed up out of nowhere just to check in on me and of course it happened to be at a time that I was trying to get my two boys to help me work on cleaning there rooms and rearrange them a little. My dear friend spent the night helping solve the boys arguments and helped me to accomplish getting their rooms done. He then came over last night while I was sleeping and helped work on their rooms some more to finish what I started.

A week ago while I was sleeping my Mom and Dad and my two boys worked very hard for two hours making me a sitting garden in a hidden little area. I don't mean just a chair... I mean plants, statues, a little fire place and a water garden along with bird feeders and hummingbird feeders. It is the most amazing place to sit at.

Yesterday was Sunday and I woke up all excited to be able to go sit out there in the morning with my coffee and enjoy the beautiful sitting garden area.

All of a sudden I began to think of how I loved to do these things. I started cleaning the front porch and setting it up with chairs and tables so we can sit out there at night or in the mornings. I filled the bird feeders and hummingbird feeders. I even went out and started pulling some weeds.

Out of nowhere my Mom and Dad stopped by again and my Dad told me he was going to be coming out 1-2 days a week to help out around here. He is coming tomorrow to make me another little sitting garden area and work on the landscaping. He is going to be coming out to work on putting in hardwood floors in the bathroom. Along with helping mow the yard and whatever else he can do to help us out.

I am so happy and grateful for them and my dear friend to do all this for me. I am excited to see things get done around here.

I know that I did not ask for help and they are doing it because they want to and to help us out but it is hard for me. Normally I am the one to do things for other people not people doing things for me. I don't know how to accept it and express how thankful I am. The "Old Me" or the "Pre MS" me would never have allowed this to happen. I don't know how to acccept help. It is very hard for me. I don't know how to accept help without figuring out a way to pay them back and I can never pay them back for what they have and are doing for me.

Don't forget to take part in the weekly polls. They are coming to an end.

MS and Insurance Problems - Polls

2009-07-12T01:31:00.003-05:00

Just a reminder there are only 3 days left to take the poll on Insurance issues.

Last week I lost my blog and all the polls. I lost everyone's votes on the current Poll. If you took it before the page change then your votes are not included on this current poll.

This is a very hot topic and the poll had a huge response of course before I lost it all. So please take the time to retake or participate in the current poll on Insurance issues as a victim of Multiple Sclerosis.

Thank You!!!

Disability and Social Security When do you apply??

2009-07-10T17:29:00.002-05:00

Three years ago when I was going through all the testing for what was wrong with me. I had to stop working. Apparently it is not good to work when you can not stay awake, wear clothes because they hurt and passing out whenever I would stand up or come in from outside.

I was told to apply for Disability. I looked into it and found out that I hadn't earned enough work hour credits to get any assistance from Social security and Disability. I have worked since I was 16 but from the age of 19 - 32 I did home daycare and then Real Estate. So even though I had worked I hadn't worked in the eyes of the Government.

So, as I progressivly got better over the last 2 years. My goal was to work as much as I could so that I could earn my credits.

Today I got a letter from social Security and guess what??? I have officially earned enough credits to recieve Disability if and when the time comes.

Now I know that getting Disability is very hard to do in Illinois. However, at least I have the credits to try for disability. They will still turn =me down but not for that reason. So I see it as a step in the right direction.

My question is that I have been told that there are 2 different types of disability. I dont' understand them. My Mom thinks I should just start the process now so that by the time I get approved then I have it in place. My feeling is wait til I need it. She thinks that if I wait til I am down and can't work then I will have a few years of waiting for the approval and at that point it is to late.

So I am confused??? If I am capable of working, maybe not full time can you still start the process?

How does this work???

When do you start applying??

Don't forget to take part in this weeks polls. We need as much participation as we can get.

Intersting Information I heard on the Radio

2009-07-09T16:50:00.001-05:00

I heard an interesting topic on the radio this morning. They had a caller who worked from a Medical Insurance and Life Insurance company who said that when a person applies for the insurance the Company then has access to all the medical records and if they see that the client has not gone in for tests, or taken medications, or gone through treatments as their Doctor has reccommended. Then The insurance Company Declines them of the insurance.

Her reasoning is that the medications, treatments and tests are to help and are preventative care.

My thought (as you all know I have many of them) is that is a bunch of BS. If you are on medications, or treatments for something or best yet your Doctor reccommends a test to be run then there are the red flags right there for the insurance companies to NOT accept you.

Short Story but very true.

I never call my Doctor for anything... My Doctor has to send me letters or run into me at Walmart to make me come in to see her. Don't get me wrong she is an AWESOME Doctor. I just don't like going to them. Anyways in June of 2006 I started having these strange symptoms. I was very tired, I was feeling like someone was rolling a cactus plant all over me. Then came the best one... I felt as though someone was touching me over and over again with a hot curling iron. I kept it to myself for awhile and in September I finally said something about it to my Mom. My Mom told me to make an appointment because it doesn't sound right. (My Mom is the one who has her calendar for the next 2 years filled with all her apointments. She never misses one and always prompt about her tests and bloodwork). Anyways, so I call my Doctor who was ready to fall out of her chair when I said I wanted to make an appointment. She made an appointment available that day. (probably because she knew I would change my mind if she scheduled it any later than that. I told her my crazy symptoms and begged her to not think I was a lunatic. Her first response was to go directly to the hospital and have an MRI done. She was concerned about a brain tumor. (A What???....I knew I should have never called her). So I went to the hospital and of course you and I both know that you wait forever and then they tell you that you are normal? Never in my wildest imagination would I have guessed they would tell me that I had Multiple Sclerosis. Besides the scarey feeling and the look on my Mom's face when the nurses had to call her to come and pick me up at the hospital and that it was because they had to drug me to calm me down. Anyways I went back to my normal Doctor and she told me to hurry up and go get Life Insurance because the further they go with testing and that it would take awhile to actually get the true results MS or Not MS. I would have a good chance of getting Life Insurance. So I did and guess what???

I got declined because I did exactly what my doctor told me to do and the Hospital wrote in the report "Positive MS" . Now here is the funny thing If it is Positive MS then why did I have to lie bedridden for 6 months until all the test were run and the Neurologist and Specialist came to the conclusion.

New Polls & Updates From Past Polls and New Page

2009-07-08T21:50:00.006-05:00

Wow!!! What a day this has been. Along with fighting a flu bug I also lost my whole entire blog. This morning I was up early early in the morning and was working on my blog. While playing around with it I stupidly pressed save with a new background without saving my back up copy. I have learned a huge lesson.

I apologize to everyone who has helped with the polls to help us and fellow MS'ers understand and learn more about MS.

I have started up again with the polls I started yesterday. I know they are a little different but please let's pick up where we left off and keep these polls going. Eventually I want to learn how to have one whole page with the polls on it but for now it can stay right here.

Please take the time to answer this weeks polls even if you answered them already because those results are lost.

Thank You!

Please Help!!! I am losing my mind on what to do.

2009-07-08T16:30:00.001-05:00

I have lost everything and cant even get the page to look somewhat normal. I am stressing so much over this that my burning and prickling sensations are going nuts. I need to get this back to somewhat looking decent and I have no idea what to do or where to turn. I have tried all these places but it is nonsense words to me. If anyone can help I would truly be grateful.

Tara

OMG!!! I lost everything!!!

2009-07-08T07:23:00.003-05:00

Please help!!!!!
I stupidly woke up early this morning and decided to try to change my blog. I never saved my old blog and I lost everything along with all my polls. So from this point forward this is under major construction. And now the tabs at the top of the page don't even work.

I am so sorry and when I get this back and going... Hopefully I can start over with the polls. Thank Goodness for yesterdays post. At least it helps somewhat about how the polls were doing.

I need serious help if anyone can help me get the tabs on the top to work and get this set up so it is working again....

Please Help!!!

What I have learned from all the Polls.. Interesting!!

2009-07-07T18:47:00.001-05:00

I was looking back over the polls from the last few weeks and I am finding a few things very interesting. I know that I have not had huge amounts of participants but still it is interesting to me.

When it comes to how long we have been diagnosed they range from less than 1 year to 15+ years. - I think to myself... I have only been diagnosed for 2.5 years and some days I can't imagine living like this for 15 + years. Other days I hope and pray that I will be around for many years to see my children grow and get married and have grandchildren.

To the question... Does anyone else in your family have MS? 76% said NO while 23% said yes. I think to myself...Would it be easier to have someone else in my family have MS? I would never wish it on anyone but I think it would make it nice to talk to someone that truly understands what you are going through.

70% of the participants showed they had Relapsing Remitting Multiple Sclerosis. Which is currently where I am also. I think and wonder to myself...How long will we stay in this phase? Will it stay like this forever? Or will we start to progress?
The thing I wonder the most about is .... Is there a time frame. Do people get diagnosed with RRMS at first and then in 3-5 years we progress to the next stage and continue like that or can we stay in this phase forever? That is the most frustrating part of this disease... There really is no answer. Some will progress rapidly and others may not at all.

Fatigue, Balance Problems and Muscle Spasms were the highest ranked symptoms that we all deal with daily. So I wonder.... If this is the case than why can't the doctors and Scientists find something that works for those symptoms? A cure is probably going to be found in our lifetime but you would think it would be easier to find treatments for these most common symptoms. If they would a lot of us with MS may be able to enjoy life a little more and be able to do things that we used to do Pre MS.

Another one that is interesting to me is that 60% of the participants are not able to work at all. Again that brings me to finding medications to treat the common symptoms. If 70% answered that they have RRMS and 60% can't work then to me that is a really big problem and scary. If they are that close to finding a cure then why are they so far away from getting the treatments to the most common symptoms that cause us not to be able to work. It seems to me it would be easier to find treatments for the symptoms then finding a cure.

That brings me to this next interesting fact...83% of us agree that our family and friends "KIND OF GET IT" when it comes to our family and friends. I will be the first one to admit that it is very true. The people that are around us daily see what we can't do but still don't really "get it". What is the trick to teaching our family and friends or is it what I have said before... "You don't get it...Until you get it"? I know that I have found myself to be a lot more understanding to others with their problems or illness's. It is sad that people just don't try to understand it until they get slammed against a brick wall and are diagnosed with something. That is how it feels when you get diagnosed with MS and probably any other disease.

STRESS!!!STRESS!!!STRESS!!!STRESS!!!STRESS!!!STRESS!!!STRESS!!! Yep 93% of us agree that Stress is a MAJOR trigger for MS Symptoms. At the same time 71% of us agreed that we were type A personality people before MS. I remember living for stress. If I wasn't stressed then I was bored. If I couldn't get enough stress from my own family issues I would borrow and take on other people's stress's. Even now after being diagnosed and hitting that brick wall I still think that I can handle stressful things the same as before but within a few hours or a day I am down for the count.
We MS'ers do need to find ways to avoid stress or learn to destress because STRESS does trigger a lot of our MS Symptoms.

I won't touch the Insurance questions yet due to those are still taking place

But I am going to end this with how I viewed being diagnosed with MS.
I am still Tara, not the same Tara that everyone knew so well. I feel that "OLD" Tara died and it has taken me 2.5 years and still going to find out who the "NEW" Tara is. I can't do all the same things I used to, I don't let people walk all over me like I used to, I have learned to be able to say NO when I need to and also when I want to, I don't borrow other people's stress nor do I look for stress, I have made difficult choices and have chosen not to allow people that were bringing me down or causing me stress to be a part of my life, I have learned to be appreciative of life and realize how short and precious life is, and probably a lot more but I can't think of them at the moment. But all and all I think I like the "New" Tara better.

Update to Poll - Medicare/Social Security and Disability

2009-07-06T20:07:00.002-05:00

Just a quick update to the poll of the week.

I had to add another poll due to the fact that I did not consider Medicare, Social Security and Disability.

So for those of you that this would apply to please go back and answer that question.

Thank You for bringing this to my attention. Feedback is great for these polls.

Tara

New Poll of the Week- Re: Insurance Problems

2009-07-06T10:15:00.001-05:00

This topic was brought up by another fellow MS'er and I think it is a great one.

When It comes to Insurance and MS, there are a lot of problems that arise. So the poll for this week there are 5 questions all related to Insurance and Multiple Sclerosis. I think this will be very interesting and helpful information for most of us.

Please take the time to take prat in the poll and help spread the word to encourage others to take part.

Again, there are 5 questions. Your answers are completely anonymous.

Remember that any topic ideas are greatly appreciated. You can e-mail them to me or post to the blog and tell me not to publish.

A MS request for a 15 year old's project about MS

2009-07-06T09:20:00.001-05:00

I recieved this letter and thought I could pass this along to fellow MS'ers to answer these 5 questions. I just did it and it is completely anonomous and very easy to answer.

My name is Anthony. My Dad was diagnosed with Multiple Sclerosis almost 7 years ago. It has taken over his life. MS has drastically changed my family’s life forever.

I am 15 years old and attend High School in MI. I am conducting research, for my Science Fair Project, on the risks of getting MS by geographic location (where you were born and where you grew up) along with birth month.

Below is a link to a short 5 question survey for people with MS. Please take the time (less than one minute) to complete the survey.

The survey is completely anonymous. Your answers will be looked at on a group basis, not individually. Your e-mail address or any other identifiable information will not be collected. Again, thank you for helping me with my project by taking the survey. Please forward this email to anyone you know who has MS.

Hopefully one day we can wipe out this disease!

Click on link to fill out survey.
http://www.surveymonkey.com/s.aspx?sm=qiI8MdTvioDo9S4bkOfHLg_3d_3d
Feel free to contact me if you have any questions. If link doesn't work, just copy and paste the link into your address browser.

Anthony
anthony.multiplesclerosis@gmail.com