The PAINS of my life!!!

Throughout my life there has been many pains I have suffered. I have gone through the pains of raising very sick children. I have lived through the pains of losing my pet of 14 years (who truly was my best friend). I went through the pain of my parents getting divorced. I have lived through the pain of being sexually abused by a family member. I have lived through the pain of deception from family and friends. I have lived through the pain of not having a relationship with my father for many years. Which we were able to rekindle but almost too late. We started to build a relationship 6 or 7 years ago and 2 years into our new relationship he had a massive heart attack and I almost lost him again. Luckily he survived and we still have plenty of time. I have lived through the pain of childbirth. I have gone through the pain of losing family and friends from disease, suicide, and natural causes. I have lived through the pain of being physically and verbally abused by a boyfriend.

Throughout all of these pains I have learned something from each experience. I have learned to live with them. I have forgiven and forgotten. I have learned to let go when I needed to. I have found understanding as to why people have done what they have done to me. I have become a stronger person. I have taken what I have learned and instilled my strength in my children. I have survived them all and have become a much stronger person.

If you, a stranger, were to walk past me or meet me I would have a smile on my face and be laughing and joking with you. I would listen to you as you tell me how your day is going (good or bad). I would be truly happy for you if you told me something good going on in your life. I also in return would be truly heartbroken with you if you told me about something not good. I am someone that will be there for you when you need me most. I am a caring person who really tries to to understand what you are going through. I get angry when I see someone causing pain for others to make themselves feel better.

As I lay in bed today from the pains of my body I find myself becoming depressed, angry, and alone. When I am asked how I feel each day I respond with "O.K." or "it's not a good day today". I can tell them "my legs hurt" or "my brain is not thinking right" or I can tell them "I was up all night from the pain" but does anyone really understand what I am going through. Or do they really care enough. I know deep in my heart that nobody can really understand what this disease can do to you and make you feel. But it is very hard to feel as bad as I do and not have someone that feels or understands how much I hurt. As much as my family and friends try to grasp the pains I have or the symptoms. Life goes on for them. For me it goes on but with constant pain.

As I lay in bed hurting from the pains from MS today. I am angry. How could I have lived through so many pains and still have to suffer more pains. Pains not caused by other people. These pains are from my own body attacking myself and causing me these pains. I do believe in God and consider myself a Christian. No I don't go to church every week. To be honest I don't go at all. I have many arguments with God. It is hard for me to understand why he would put me here on this earth to suffer so many pains. I guess it is the "Why Me" syndrome. However, at this moment I feel I have a right to question him.

Throughout my life I have learned to cope and deal with pains brought on by others but I have never been taught how to handle so much pain brought on by my own body. Some days are better than others of course. But on the really bad days I sometimes wonder if there will be a day that I won't have to suffer "Pain"???

By the way I do have a lot of Happiness in my life also and someday when I am not in so much pain I will write about all the good in my life.

Swine Flu!!! "Not any worse then the regular flu"?????

What are they thinking???? The government is claiming that this is no different then the regular flu. If it really wasn't any different why would it be all over the news every 15 minutes and why would schools be closing?

I really do believe the Government is down playing this and has been since it moved from Mexico to the U.S. What will they be saying in a week from now when we have deaths from this and lots of schools closed. It scares me a little to think about this. They are already calling it an epidemic so when does it change to a pandemic??? Two days ago it supposedly was not in Illinois, 24 hours later there are 9 "probable" cases in Northern Illinois. In different areas having to close 3 different schools.

We with MS, along with anyone with compromised immune systems or the elderly and infants. I would believe are at a higher risk. Why isn't the health departments calling us and telling us that we need to come and get immunized? I believe the Government should start now protecting us and then if it gets worse then start opening it up to all of the public. Just like they do the flu shots in the Fall.

Oh I forgot!!! "this is no worse then the regular flu"

UPDATE:: It is now 24 hours later and they have just updated Illinois from 9 to 41 probable cases.

The cost of Medicines.... There is help out there!!!

When you have Multiple Sclerosis along with many other diseases. The cost of the medicines can cause you to go broke, depressed, and having to choose between medicines and/or bills or groceries.

I have been dealing with this for a few years now and then last year my youngest son was diagnosed with a very rare autoimmune disease that attacked his skin. Anyways, at that point there was no question about it. I had to stop my medications so I could afford his medications.

I have insurance but the co-pays add up and it gets to the point that it feels like you don't have insurance at all. I feel even more sorry for those that really don't have insurance and don't qualify for medicare.

Here is what I found out ****Tips and Tricks****

1) You can contact your insurance company and ask them if it is possible to buy in larger quantities (more months at a time) and a lot of times you pay the same amount deductible for 3 months worth than 1 months worth.

2) You can separate yourself from the medical insurance so that you have NO insurance and go onto Public Aid. All medicines and Dr's appointments will be covered. The down side to this is you are then restricted to go to Doctor's that will take Public Aid. So do your research.

3)For MS patients specifically... I know that our shots can cost up to 2400.00 per month for someone without insurance. People that have insurance but have a deductible it still is costly but nowhere near what people with no insurance can cost.

4) Talk to your Neurologist and explain your situation. they usually have ins and outs to helping you find help. They know that the shots are our only hope to preventing future permanent damage. My understanding from my own Neurologist is that they can recommend what shots he/she thinks are best for you. Some Doctors choose based on kickbacks from the medical company so take what they say lightly. Do your homework and find out what companies will help you and then talk to your Neuro and let them know which shot you would like to be on and explain why. Sometimes there is a reason the shot you would like to use is not the best one for you but a lot of times it is what will be most convenient for you.

5) Check into research study programs.

6) Contact the actual makers of the shots and ask them if they have any assistance programs. Usually they do.

Here is what I learned. Most of the companies that supply the shots have some sort of assistance. It may or may not be better than what you pay already. When I first started on Rebif they had a program that if your deductible was more that $50.00 a month or no insurance at all you could qualify for assistance. They would give you the shots and you would pay 75.00 for 2 months and then the 3 month was free.

Last year when I called them to tell them I was no longer needing there shots Copaxone. They called me a week later and told me about a program that they had started to assist people that needed help. If your deductible was 50.00 or more and you could explain why you couldn't afford your medicines they would put you on a program that I now get them for free. They waive my 50.00 co-pay and the insurance pays the rest. I don't know how long I will qualify for this but When I was paying 200-300 a month for my medicines and then my son needed his meds and that was costing another 100-150 a month. They didn't bat an eye at all and they have been wonderful.

I was never on any of the other shots however I know there are programs out there. It takes some research but you can get help. I would start with calling the company that sends you your shots and ask about assistance. If they can't help ask them where to go for help. If that doesn't get you anywhere then contact the National MS society and they will give you a list of phone numbers to call directly to the makers of the drugs and see what their qualifications are and see if you qualify for assistance.

Listen... Here is the point I am trying to make... The Squeaky Wheel Gets the OIL!!!!
Yes you have to take the time to make the calls and or fill out the papers but the help is out there. It's kind of like doing taxes... There are a lot of deductions you qualify for but if you don't figure them all out yourself the Government won't just give you the money..

While I am at it I want to add for the Newbies of MS or possible MS. The minute you suspect that you have MS based on your symptoms or your regular Doctor suspects that you might have it... Before doing any testing at all. Tell your Doctor not to write anything in your records for a little bit of time so that you can get Life Insurance if you don't already have it. I am speaking from experience. My Dr. suspected a brain tumor so I didn't have any heads up so she sent me to the hospital for an MRI. The MRI showed lesions on the brain so they came in right away and dumped the diagnoses on me. I then had to go visit my Doctor 2 days later and she said go get life insurance because it takes time to get a "TRUE" diagnoses. Lesions on the brain can be from a few different causes. I ran right out and applied for life Ins. I thought we were good however a week later I got a denial letter because the hospital wrote in my records that I had MS based on the findings of the MRI. In reality he diagnosed me 6 months before I had a true diagnoses and because of that idiot... I can not get life insurance.

If anyone else has anything to add to this please feel free to add to this and/or links to where to go for assistance.

http://www.msassociation.org/programs/medications/types/

http://www.msassociation.org/programs/

http://www.nationalmssociety.org/

Dr's don't always know what is best for you

I kind of get side tracked but I get back on subject towards the end!!! Sorry!!!

Doctors prescribe meds based on symptoms because that is all they can do is work on the symptoms. It is your body and you have the right to try other things to eliminate some of the drugs you are on. Explore and educate yourself.... Herbs, Vitamins, nutrition, teas...massage, acupuncture and so on...

My last exacerbation (flare up) was last October. It was what my Neuro described as a "Major" exacerbation (flare up). I held out for a while until I finally called him. Here's the thing when I start having a flare up I go as long as possible before calling him. Mine typically start up with all my normal symptoms ( fatigue, muscle spasms, tightness around right leg, burning and prickling sensations) acting up. Then within some time the normal symptoms get continuously worse or some more of my symptoms that appear less frequently start happening. ( spasms and numbness in both legs, bladder and bowel problems, double vision,and the fatigue gets more severe). At this point I still don't usually see that it is going into a flare up. All of a sudden a NEW symptom kicks in. Depending on what the "NEW" symptom is. It still doesn't quite kick in as to what is going on . But I do realize at this point that I am not doing well. I usually start to get very frustrated and I tend to start crying a lot. Then the new symptoms starts getting worse and I am fed up or one of the symptoms usually my eyes will cause me to be nauseated. Nausea is a symptom that I can't stand. This is usually the point that I call the Dr. and beg them for help. when I say help... I always say Is there any thing besides steroids that can help me? And there answer is "NO" It is either steroids or keep fighting through it. However by this point I am so worried about what else is going to come or how much longer this is going to keep going? So I agree to the steroids. Once I say yes to STEROIDS. I usually start getting very depressed. Because I know what is going to happen. I am partially relieved because I tend to respond well to the steroids when it comes to putting a halt on the attack. However like I have said in the past... the side effects are so extreme for me and that is what I get so depressed about.

All in all I try to find the positives when dealing with MS but in those times I get so negative and depressed. I don't get it. Some people that get the steroids get excited because they are overcome by a huge amount of energy. Not me!!! I can't sleep for 3-4 days but I never get the energy boost like those people. 2 days after the treatment is over, my face swells out until you can't even push in my skin. I usually put on 35 pounds in 5 days and it takes of course a year to get off again. It also usually starts up my bowel problems. Why does it happen to me and not others??? I have no answer to that question.

From the time I make the decision to do the steroid treatment. I usually have 24 hours to get prepared. So this is when I move downstairs. I move downstairs because I already struggle with the "rubber band" legs so my balance (gait) is really bad. By moving downstairs then I am not using the stairs during this time. I have my kids help me bring down my "MS Clothing bucket" with my "MS sheets and blankets". I bring down my meds and shots along with my "Medical sheet". I usually have my husband go and get me lemonade (which I mix with water), He also gets me cinnamon candies and lemon heads to help with the metallic taste and stuff for soup. And now I am ready for the treatment.

The Nurse comes to my house, which I am grateful for. When I first had a steroid treatment I had to go to the facility. Not good!!! So, I explain that I do not have a ride due to my husband's work schedule and of course due to the symptoms they won't let me drive...So the nurse comes to my house and does the treatments. I prefer this so I can sleep during the treatments. This is a trick I found that helps.
The rest is History. I have written about in my past blogs.

Oh!!! I got side tracked from my main topic.... "Doctor's don't always know what is best for you"


The point I was going for was that the doctors will give you meds to help with each symptom you have. This will continue until you have a pile of 15 meds. When it comes to the meds. You need to learn what they do for you. It is up to you to learn when you don't need those meds or when to lower the dosage. I usually label the bottle as to what it helps with. Example ***Med name and then write "Vertigo with nausea"*** on another bottle write ***"vertigo no nausea*** Since I don't have those symptoms all the time then I know to stop them as soon as the symptom goes away. When it reappears again then I go to those meds again. I guess what i am trying to explain is that when you are on so many meds, it makes it difficult after awhile to know what meds you really don't need to be taking and that is just extra chemical in your body everyday that your liver has to try to process.

When I am done with my flare up - I then have time to try to determine what meds I have to have and what meds I can stop. then I take the "symptoms book" with me to the Fruitful Yield store and GNC store and tell them the symptoms I was having and what meds I was taking. They help research what other options I have. "naturally, herbal, herbal teas, Nutritionally, etc... I take that info and start asking others with MS or research these ideas online. So then when those symptoms reappear. I can now try these new alternatives before using the medications that the Dr's prescribed.

I really hope this makes sense. I have so much info swirling in my head on this topic and trying to type as fast as the ideas are coming out.

Where did my brain go??? Cognitive problems and MS

Wow! I was just reminded about a major issue that happened to me back from the first major exacerbation in 2006 - 2007. It's called Cognitive Problems otherwise know as "Brain Problems"

I am starting to remember issues that I was having back from that attack. Along with the other symptoms... I was having memory problems along with thought processing problems. I remember vaguely a day. It just happened to be the first day I had some energy. When I say that I mean I had been sleeping about 23 hours a day and that day a had about an hour of energy. I got up had some coffee and a protein shake then I did the dishes. There was only about 5 dishes in the sink. I started 1 load of laundry and still had some energy. WOO HOO!!!! So I took all the Tupperware out of the cabinet. I sat on the floor trying to sort the containers. Putting lids with the right containers. Within a short period of time I found myself getting very frustrated and angry but not being able to understand why doing such a simple job (Normally) would frustrate me so much. It was about an hour later my Husband came downstairs and asked what was wrong. I was crying by this point. Not just a few tears but horribly hysterical. I showed him that I had all these bowls and a whole pile of lids but couldn't find the matches. I was mad at him and the kids for not putting all the Tupperware away and demanding to know where all of it was.

Within a few minutes he came and sat besides me to help try to figure out the mystery of the Missing Tupperware. I am sure for a second deep inside he was getting a chuckle but he was kind enough not to laugh when he saw what was going on. He solved the mystery. I had been sitting there for 2 hours crying and angry and frustrated trying to put circle lids on square bowls and vice versa. He carefully showed me the problem. And boy did I lose my mind after that. I cried even harder wondering what was wrong with my brain. Where did it go. Why was God (if there really was a God) doing this to me. Wasn't I going through enough????

Needless to say I never looked at the Tupperware again for about 6 months.

While I am on a roll.... Another issue I was having was that I found that I couldn't read and comprehend what I read. I also could be told something even important things and I never could remember. It drove me nuts and I hate to admit it but still does drive me nuts. The reason it still bothers me is because I still haven't regained that part of my brain. I have learned tips and tricks to assist me with that. I will get to that in a moment. The Doctors did try to give me Aricept which is for older people with Dementia or Alzheimer's. Like that wasn't enough to piss me off. I do think that it did help in some ways. I regained some of my cognitive skills however some of them were permanently damaged. It is something I have to live with... now accepting it is a different story. My kids get a chuckle out of it sometimes. They come and tell me things and I answer their questions or we have a full conversation and then the next day it comes up again and I argue with them that I never said that or I am just as excited to hear there story as I was the day before because to me it is the first time I ever heard it. Yes I get pissed off about it and I hate it but even I kind of laugh a little. I guess that is called accepting it.

****Tips and Tricks*****

I bought myself a small little recorder that I would keep in my purse. Not too expensive and small so it can fit in your purse or pocket. I leave myself messages on it. Where I parked, What I need from the store, the reason I called someone, what someone told me so I could remember it to tell my Husband or just for me to remember it later.

I bought myself a lot of post it notes and a notebook. I jot down notes all the time so I don't forget what I am supposed to do or what I just learned or whatever I need to remember.

These tools have become my brain or better yet my MEMORY

On a happy note.... In time ( a long time) I have regained some of the thinking, processing and memory skills. I still can't read something and remember what I read which is very hard to deal with but I find ways to cope with it now. But I have found that if I hear something and do it a few times I can remember it. I have found humor in the fact that I can watch TV shows especially my favorite over and over again because it's like seeing it for the first time. I will have to say that I have gotten to a point now where if I have seen it before even if it was just the day before. I recognize that I have seen it before but I still can't remember it or how it ends.

I am sure there is much more that will come to mind after I post this so I might have to blog some more on this topic as things come back to me.

MS and Marijuana.. Does It Help or Not???

This is not one of my proudest Blogs but I promised the Good the Bad and the Ugly!!!



I have never been the type to use marijuana. I tried it back just out of high school and it put me to sleep. What a great time I had at that party huh? I have never thought about it again until a major exacerbation hit in the fall of 2006. I went for months laying in bed in so much pain. It was muscle pain, burning sensations, prickling sensations, vertigo, bone pain, tendon pain, numbness and tightness in my right leg and lower back. Not to mention the anxiety I was going through because I thought I was dying along with the depression that came with being stuck in bed.

At one point there was a day while going through I.V. steroid treatment that I received 2 magazines. One from MS Society and one was MS Focus. I also had just been given a nutritional book from a nurse that was teaching me how to give myself the shots. I was even in more trouble from all the side effects from the steroids. I couldn't sleep for 3 days straight which of course made me emotionally drained along with seriously stressed. I started reading the magazines and it listed all sorts of medications and treatments for the symptoms of MS. I was shocked and amazed that there in these MS magazines it talked about the usage of Marijuana and how it has been shown to help with a lot of the symptoms of MS. In a very desperate moment I got my hands on some to try to see if it helps. The reason for this was I was desperate but also all the medications the Doctors had me on to help the symptoms and then of course those to counteract some of the side effects from those medications. Another problem was all the costs of the medications. I was paying about $300 - $400 a month on all the medications. I couldn't afford to put food on the table for my family but I was spending that much money on medications. Along with all the pain, anxiety and depression now you add in the factor of guilt. I felt tremendous guilt that because of me being sick I was causing more problems for my family. I remember the day actually a couple different days that I have felt like if I wasn't here then my family could move on.

At first I was excited that there might be something that would help me to feel better and might be cheaper than all the medications I had to buy. So... I tried it. I will admit that the muscle spasms stopped, The tightness in my leg and back went away, the anxiety was relieved, the depression seemed to go away and the pains were relieved. To the point that I didn't even need to take my medications that night.

However, As I layed there so extremely relaxed and not feeling the pain. My brain became paranoid. I was scared that someone might find out and be disappointed in me. I was mad at myself because I have had to work very hard telling my kids to stay away from using drugs. What a hypocrite I was. And because of these feelings I couldn't allow myself to enjoy being pain free and relaxed. I was disappointed in myself.

Some days I wonder about using it again just to help some of my symptoms subside. But again then the disappointment kicks back in so I choose not to use it. I know that marijuana is natural and probably better for me than all the stupid chemicals that I put in my body everyday but I just can't do it.

That of course is just an internal battle inside me. I still question in my head every month when the magazines come out and repeatedly tells how marijuana works for MS but then immediately follows up with "but it's illegal in most states".

Maybe if my kids were older I would reconsider it but who knows. I guess I will figure it out when that day comes. The funny thing to me is if they know it works for MS, Parkinson's, cancer and I am sure some other diseases then why haven't they legalized it? I still don't know if they legalized Medicinal Marijuana if my feelings would change. But I wish they would do it for the rest of the world to use to help with their symptoms.

All I know is that I currently am taking 9 different medications plus my shots to get me through each day. If I was to change my opinion I know I could knock out at least 5 of my medications. "Chemicals" that I am sure are way worse for me then marijuana.

This is not one of my proudest Blogs but I promised the Good the Bad and the Ugly!!!

Kreativ Blogger Award!!! I have nominated and passing the Award to my 7 choices.

Thank You Weather**Vane** http://myweathervane.blogspot.com/ for nominating me for this KREATIV Award. However, I too agree that you deserved this Award.



I was given this Special Award and I am passing this award of to these Seven KREATIV Bloggers



Amelia - Tales of Life With Multiple Sclerosis
http://talesoflifewithmultiplesclerosis.blogspot.com/

Herrad -Access denied-living with multiple sclerosis
http://accessdenied-livingwithms.blogspot.com/

Jamie - Living with Multiple Sclerosis
http://jmelivingwithms.blogspot.com/

Jane - Jane 4 Girls 800 dollar Annual Budget
http://jane4girls800dollarannualbudget.blogspot.com/

Silent Mike - My MS and I
http://mymsandi.blogspot.com/

Denver Refashionista - Living With MS
http://ysestringer.blogspot.com/

Kelley - Sisterhood (and Brotherhood) of The Compromised Myelin
http://kelleysmsblog.blogspot.com/

PLEASE TAKE YOUR SPECIAL AWARD AND PUT IT ON YOUR BLOG PAGE AND THEN PASS IT ON TO YOUR TOP 7 NOMINEES.

My Special Area with pictures

This is a continuation to my last post. "MS... is like the change of seasons"

The Beginning of the Pathway!!!


The area I want to make the sitting area!


Entrance Area to the Special Area!! As you can see there is a lot of weeds. Some that are good and some that are bad and I need to get them out of there.


O.K. So I woke up and drank my coffee outside in my area. I took some pictures so you can see the mess that it is now and hopefully you will see the dream "retreat area" I am hoping for it to be. I would love any suggestions you might have. I live in Zone 5. If anyone has any plants that you are going to be dividing and not having a place for it to go I will pay for the shipping if anyone is interested. It is kind of overwhelming at this point. I started moving branches that have fallen off the trees and am using those to kind of make a guide for the path. I hope that makes sense. Never really having money... I love to make things out of nothing. I would really like to grow herbs for the aroma and for teas and cooking however I am not sure if they grow in the shade or if they have to be in the sun. There are a few Sunny areas I can plant things but for the most part it is shade. Suggestions would be great!!!! Ok. I did a little in the area today and then did some chores around the house and then that was it for me. I am now back in bed. My legs are not wanting to work or keep me balanced today. I do believe the rain ends after tonight. YEAH!!!!!

MS...Is Like The Change of Seasons

We have had the longest Winter this year. I have been waiting and waiting for the first signs of Spring. It has finally come and without fail so has the rain. Lots and lots of it. I know that MS symptoms are triggered by the raise of your body temperature but during the Winter especially when it is 20 degrees below 0. I know my temperature isn't raised however my symptoms are triggered during the Winter. I would love to know how many people have their symptoms triggered during the Winter. In all the MS books ex. "MS FOR DUMMIES" it talks a lot about all the problems that come with Summer heat but nothing about Winter cold or Spring and Fall rain????? For me each season brings on the symptoms just different ones for each season.

Now I find that kind of funny. MS is like the change of Seasons throughout a year.
So as I was saying... The Spring has sprung here in Illinois. The tulips have bloomed the leaves are budding my yard is filling quickly with the "pretty yellow flowers" that most know them by the name of Dandelion. A Weed!!!! Annoying at that. But I feel if I give it a nice name then I won't get so frustrated and irritated every time I see them all over the yard. We don't fertilize due to the chickens. Oh I mean because I am being "organic". Anyways getting back to my point... I have waited all Winter for this time to come again only to be disappointed by all the rain we are having. I have spent the last day in a half in bed with burning sensations all over my body and also very deep pain in my legs along with burning in my knees. I slept 16 hours yesterday into today. And then again took a 2 hour nap this afternoon only counting the minutes til I can go back to sleep again. When I am sleeping is the only time I can not feel the pain.

The part that really drives me the most nuts is that all I think about is going out and working on my garden and also my "Special" area that I have decided to work on this year. With the help of my brother-n-law giving me some ideas to help me get started. I am going to take a really Awesome area that is shaded by the woods which will give me the ability to work in the area. Shade not bright and sunny!!!! And turn it into a sitting area to relax and also a walking path for me to walk through the woods. Not long distance but just enough to give me some exercise. I was out there on Friday starting to clean up the area and getting some ideas. However I worked until I could barely feel my legs. I didn't care. I knew that when I stopped I would be down for the count anyways so whats the point if I stop when I hurt or stop when I really really hurt????

Apparently we are in for another day of storms tomorrow. I guess we will see if it keeps me down again another day or maybe I will stare out the window and continue dreaming of the possibilities of my "Special area". I will post pictures as I work in that area...

The Struggles kids go through in life but also as children of parents with MS

So I come home from a good day at work today only wishing to go back after what I came home to. I get home and walk into yet again the piglet house. Also my daughter's progress report which was not good at all. I don't understand because up until this year she has been a straight A and sometimes B student. Part of me thinks it is due to the car accident she was in last October but who knows. To sum up in a nutshell she was a passenger in her boyfriends truck. He lost control of the vehicle and hit one tree and then ricochet off into another tree about a 75 feet away. She was very traumatized by it. Recently we were able to get her to confront her fears/ anger/memories that have traumatized her and has been controlling her life since that day. I am not sure if that is what has stunted her grades but I am nervous that it will hurt her ability to get into college. We don't have any money to pay for it so we were hoping for scholarships to assist with that.

At the same time of reading her progress report we also got a phone call from my older son that a parent wants to talk to me because she is mad at him for going to her house and confronting her son about some things that her son may or may not have said. I was raised with 3 sister no brothers and maybe that is why I don't understand boys or maybe it is just my son that I don't understand. He is considered to be popular at school however he tends to make the dumbest, stupidest, brainless decisions without thinking about the consequences. I was very angry at him on the phone the minute he called and told me that a parent wants to talk to me that I didn't give him the chance to even explain himself. At that moment I really didn't care. And I really don't have it in me to talk to a parent at this moment. Anyways, a few hours later I went downstairs to get something to eat and asked him to explain what happened. He said "Mom, he has been talking about you!!!! He was making fun of you because of the MS and said you (me) were retarded".

So now I am stuck trying to understand how he felt and why he reacted the way he did. I am a big enough person to understand that kids talk crap. My feelings aren't hurt by it however I can understand how my son must have felt. He has always been extremely protective of me but since the diagnosis he has become even more. I still haven't talked to him... I went back upstairs to my room and was going to take a nap however I am so confused on how to handle this and what to say to him but also what I am going to have to say or hear from this parents Mom????? Any suggestions????

What exactly is "Normal" ?????????

It is so hard to believe that it has been 16 years. My husband and I met back in 5th grade. We started "going together" at the beginning of 5th grade and continued on and off until we had our daughter at the age of barely 20. We got married 6 months later. Getting married so young and having our daughter at such a young age was difficult. We didn't have the most "Family" support. I never could understand why they didn't support us. At 20 years old I thought it was due to most of my family being divorced and remarried. But now at 36 years old I think I realize that they were just very concerned about how difficult it was going to be.

Going back in time at 20 I really didn't believe much in marriage due to all the divorces. I kind of looked at it as "what ever happens...happens". Of course the first year was great and it went by fast. However after that it was difficult. Neither one of us had gone to college. So we were working but not making much. We lived at his family's house for that first year and then we rented an apartment. As we were living the adult life and being parents our friends were at college and going to parties and having "FUN". We too were having fun but not in that way.

At the age of just barely 23 we had our second child a son!!! He was beautiful and perfect until the age of 3 months. He became very sick. We were in and out of hospitals and "Specialists" non-stop. My husband would go to work and be Dad to our Daughter. While I was being Mom to our sick son. Staying in the hospitals and going for testing all the time. They never could get a diagnosis but in short I will try to describe what was happening. He was considered by the doctors an "Failure to Thrive" He could not keep anything down. Whatever he would eat would come right back out. I even remember at his Baptism.... He threw up all over me and himself. The Pastor handled it well and took the cloth off the main table ever so calmly and brought it over to me to clean myself but also to clean him up. They tested my son for all sorts of diseases. Here we are now 24 and had been dealing with this for a year and then the big kicker.... The Doctor told us that they do not know what is wrong with him but they needed us to know that they don't know if he will survive this. He was one and didn't have the strength or ability to even crawl. We were so devastated and angry that a doctor could not fix him.

Anyone that knows me knows that if you tell me NO or I can't do something I WILL PROVE YOU WRONG!!!! My husband and I were still crying from the news when the Anger over took me. I will be damned if I will let him die. I was not going to give up on him.... I took all his medicines and threw them in the garbage. I sat him in the high chair and put whatever I could find in the kitchen on his tray in hopes he would eat and maybe just maybe he would keep some down. He did and slowly he kept more and more down. His energy started improving the dark circles around his eyes slowly started to improve and then it happened.... He got up on all fours and crawled. We were so excited... it wasn't much longer before he started to walk. Yes he definitely wasn't at the "NORMAL" standards for achievement and growth as other kids his age but within another year he was. Whatever was wrong with our son was over. And "WE" did it... Never giving up hope.

About another year after his improvements we decided to have another child... Of course our family was quite skeptical. But we did it anyways. We had another son. He was perfect. When he turned 1 all of a sudden he started having seizures. The doctors at firs couldn't figure it out. OF COURSE!!! it had started in the summertime. He had had probably 3 of them. I might as well add in here that at this point our first son's problems had returned also. One day at the hospital after a seizure and throwing up just once. The Doctors had said he was severely dehydrated. How could that be??? His sugar levels were also very low. They figured it out. My youngest son was HYPOGLYCEMIC . That is what was causing the seizures. We were sent home with a blood glucose meter and had to prick his fingers every 2 hours along with making sure he ate and drank every 2 hours. Then there was a day that our older son had asked if we could take his sugar levels. We didn't see any harm so we did it. His level showed "HI" no numbers. So we did it again and of course same thing. We called the doctors and they tested him for diabetes. Answer was NO. Then was our machine broken??? We were given another machine to monitor his levels also. It was happening over and over again. The doctors concluded that his brain thinks he has diabetes but really doesn't. We found that if we treated him the same way as our youngest and fed him every 2 hours that... When he was reading "HI" and we would feed him that it would kick his pancreas into working again and his numbers dropped into normal levels. So to sum it up... Both boys had sugar related problems. Opposite reactions but treated the same. Once we figured that all out then our lives became back to "Normal" and they continued to improve. I believe about 4 years ago was the last time we had to test them. They have seemed to outgrow whatever the problem was.

Now I say "Normal" lightly. What we consider normal is definitely not normal to most other people. But for us it is. We have had our fare share of ups and downs. Now I did say about 4 years ago was the last time we had to test the kids. If you have read my profile or blogs you will know that it was almost 3 years ago when my MS started up however it was only 2 years ago that it was finally diagnosed. So like I said... What is "NORMAL" for us is not for most people.

And so here we are. 36 and married for 16 years today. Wow, however did we make it through all of this????

There is a tornado in my brain

Have you ever had one of those days that you come home and feel like you were in a massive tornado and you can't tell what the hell just happened? I had one of those days today. The funny thing is that so much happened in such a fast amount of time that I honestly don't know what happened. All I do know is that around 2:00 today I started getting those crazy burning sensations in my arms and neck as if someone was placing a very hot curling iron on me every few seconds and I was feeling the fatigue big time. I only get those sensations when I am overwhelmed and stressed. That actually was the initial start up symptom of my MS along with the fatigue. Anyways, I was so glad to come home and climb into bed and take a nap. I woke up and things didn't seem so bad or overwhelming anymore. I still couldn't tell you what all happened or what caused me to go into this major whirlwind.
I really have nothing to even talk about today. My brain is just spinning and I can't slow it down to even concentrate on a thought at this moment.

What??? 3 Pigs in my house???

Ok... so I don't really live with 3 real pigs (I guess). But My 3 wonderful children are absolute PIGS!!!

It is the same thing every day... I wake up and do the dishes from the night before along with dishes that I find all over the house from my three little piglets and all their friends. Then start the laundry. Which of course should only be at most 3 loads but some how I have 5-6 loads. I don't even see them wear half the clothes. Of course I then start my Roomba up to help out with the vacuuming. Then I get ready for work. I leave for the day and when I come home, the house still looks ok but maybe some books and papers on the table and counters. After dinner I go to bed. And then it happens... The Pigs come out and play!!! Does anyone else have this happen??? It's like a massive party is held in my house every night after I go to bed. Remember my blog on "Baby Steps"??? Well, the problem with my baby steps is that every morning I start over and never get the chance to move on to other things. One of these days I will take a picture of what it looks like when I go to bed and then I will take a picture of when I wake up and you can help me figure out what really happens when I am a sleep??? It's a mystery to me...The funny thing is... It's a mystery to my 3 pigs too.

Like I said before... Not always about MS. This one is about my life.

MS and Baby Steps!!!

With MS it is all about "Baby Steps". The problem with MS is that our brains and thoughts are still YOUNG. Its like our brains don't know what our capabilities are. What I mean by this is that I have many days that it is beautiful outside and all I want to do is get out and work in the yard and do gardening or I want to clean out the house and prepare for a garage sale. So I get into my work clothes and am all excited only to find that after 15 minutes of work my body gives out and says "STOP"!!!
I then come back inside and crawl up the stairs to get back into my PJ's then get into bed and get so depressed that I can't do what I want to do. I will allow myself to be depressed for an hour or so and then I try to remember "BABY STEPS"!!!
Baby Steps means that you wake up in the morning and you get the dishes done and maybe a load of laundry and then you have to stop because your body can't do anymore. The next day you get dishes done and a load of laundry and maybe clean out your Tupperware cabinet and then you are done. The next day you skip the dishes and laundry or maybe you do those and then you go outside and pull weeds out of a small flower garden. You get the point.... Those are "Baby Steps". When you get in bed be proud of what you got done that day!!!!!
Maybe this is the hardest part of MS. It's called "ACCEPTANCE"
Yes, I said the word "Acceptance"... We all get to a point at some time or another that we think we have finally accepted that we have MULTIPLE SCLEROSIS. But do we really??? Acceptance is a BIG word. Maybe we never truly accept the disease or maybe we do some days. But can we really accept something that takes our abilities away whenever it wants to??? I lay in bed and think wow I want to get outside with my son and play catch with him. Ya know I used to play softball for 8 years when I was younger. I also did track, volleyball, basketball, Oh and poms. I know how to do all these things and I love to do all of this. But why does my body not allow me to do these when I want to do it??? I don't want to offend anyone but I am 36 not 99. I know women that are 65 and are outside golfing, gardening, running and so on. But me..... On a good day I can walk all the way down my driveway (by the way my driveway is almost and acre long). Now how can anyone truly ACCEPT that?????
I know that I can say that I "ACCEPT" that I have a STUPID disease but I don't think I can truly accept what it does to my body.
So to me it is easier to "ACCEPT" my term of "BABY STEPS". Be proud of what you did accomplish each and every day. Even if on your worse days ever if all you accomplish is taking a shower. BE PROUD. That means that even though MS is trying to control your life and keeping you in bed. You are fighting it. Never ever give up or give in!!!!!

Good News! Things are about to change for me!!!!

Well, starting May 1 things are going to change BIG TIME for me. My friend and someone I have been working with for almost 1.5 years (Yes, the job I technically don't work for anymore) is going to be buying the business.He is the reason I am still helping out over there. If you read my last posts on "work" then you understand what I am talking about.
We just found out last night. I am officially the Office Manager. Even though that has been my job all this time but I was referred to as "THE GIRL"!!! You probably can guess I work for all Guys!!! I am super excited and nervous at the same time. Starting today I have 10 days to get all accounts transferred over and set up new accounts along with everything else so that the transfer goes Smooth.
With the new change my hours will be based on me...WOW what a difference. I can work the hours that works for me those days and I will have everything set up online so I can do work from home also. The biggest part is that I will be working for someone that respects me. He also understands MS and recognizes it also. Now how many people with MS can say that??? I am counting my blessings.
Of course I am now under a lot of stress to make everything run smooth and see this business succeed but it is good stress. We all know that with MS good stress and bad stress are the same. But I am looking forward to this new adventure.
Yes, I know I will be putting more hours in for 10 more days but then my hours are going to be 8 or 8:30 - 1 or 2. Which is perfect especially with my husband working second shift. Now I can be home more with the kids and they are not having to be "Momless" everyday. I have found that when I work those hours then I can come home and take a nap and then I am up the rest of the day with them. I am SUPER EXCITED about that.
I know this isn't my typical writing but it is what's on my mind today.
Wish me luck!!!!!!!

Weather and MS!!!! MS First Aid Kit

Weather can cause so many different symptoms for someone with MS. Sometimes they can become so intense you would think that it is a MS Exacerbation. Only to find that once your body temperature goes back to normal then the symptoms seem to subside. Summertime seems to be the most common time for all MSers to struggle with this. These symptoms that you get when your body temperature rises from heat are "Fake Symptoms". I of course don't have my MS For Dummies book handy to find the Technical term. However "fake Symptoms" is good enough.
There are things you can do to help you get through the Summer and make it enjoyable.

MS FIRST AID KIT


1) get your self a cooler that will be Your "MS FIRST AID KIT"

2) Buy some of those reusable hot/cold packs. a few small and at least 1 for the back. (These tend to not get hard as a brick when in the freezer and can easily form to your body) When you start to feel your body temp rising place these on you. The best places on your body to cool you down fast is your wrists, neck, forehead, ankles, even your back. And for the women another great place and works fast is in your bra.****I have an extra set for at home. The big one I place in a towel and under my back as I lay down for my afternoon nap.

If you can sew or know someone who can sew. You can make these really cool wraps very cheap and make them fun and colorful.
Get your self some cheap cotton material. Cut these into strips long enough to tie around you wrists, neck, forehead, ankles, and for the bra cut the material into a moon shape. Place inside a small amount ( A little goes a long way) of water-absorbing crystals actually used to keep plants moist. Then sew these up. Once you have these made. They are reusable and alleviates you from having ice packs everywhere you go. All you do is whenever you need them soak them in very cold water for about 5 - 10 minutes ( they will swell up) and then lightly ring out or blot dry with a towel and then tie them on or like I said place into bra. When you are done let them sit out on a towel for a day or so and the crystals will dry out and go back to flat again.

2) Wear a hat when in the sun. You can make this fun!!!!

3) Lots of water bottles - being dehydrated doesn't help with cramping and spasms. Drinking plenty of water helps keep the spasms at bay or at least a little less extreme.

4)A wash cloth to wet down and use on your face.

Also just a note... The MS Society also has "Cooling" vests, wraps, etc.. that they give to people with MS. Check out their website and request some for yourself.

If anyone has anymore to add to this First Aid Kit feel free to add on.

Hope this helps everyone throughout the warm weather!!!

Always better to be prepared for Emergencies when you have MS!!

Always be prepared for MS!!!! What I mean by this is that you never know when MS is going to act up so if you are prepared then you can handle things better.

Over the last few years I have become more prepared and it makes things easier so I am going to share my tips and tricks with you and hopefully as more people read this then they too will add what they have learned.

Tips and Tricks

1) I know that I have prickly sensations so bad that I can only wear certain types of materials. For me is super soft fleece during the colder days and tank tops and loose shorts during warm days.

Tip is to have a bucket labeled MS clothes. This way you and/or FF can locate them when needed.

Also bedding is a problem for me during those times. So I have a storage bag that has the only soft sheets and blanket that I can have touching me. I keep that in the "MS Clothing Bag" On top of this bucket I keep a fan. I seem to always have hot flashes. Not from hormones just the MS.


2) I know that when I am having an exacerbation my memory is horrible. Of course that is when the Doctors ask all sorts of questions on my meds and dosages.

Tip Go to Word perfect or Word and type out your name, b-day, address, phone# and E.R.contact phone #'s, Dr. name and phone # also your Neuro's name and phone #. - Then put all meds taking and dosage and how often. This includes vitamins and other homeopathic or herbal tx. Next list all your allergies Highlight These in RED. Then also include any hospitalizations and surgeries(when and why).

When you are done Print out a few copies. Keep one in your purse,car, bedroom, kitchen, give a copy to your E.R. people Spouse or Parent or Friend. Most importantly keep one in your "Emergency Bag". I will explain this in a minute.

3) Get yourself a small notebook and label it "Symptoms and Treatments".
In this book you will leave the first 2 or 3 pages blank. On the next page at the top of it write down a symptom you have and write Page 1. Each page you will continue to label the page with a symptom you are having or had in the past and continue to number the pages. Now the front 2 or 3 pages you will use as your "Table of Contents" so on the first line you will write what your first symptom was and what page it is located on.

Next. Turn to the First symptom. Write down what you have tried in the past to make it better. Also note if it worked or not. You have a whole page to keep a log of what you tried and what worked and what didn't. And what medications or treatments you used and if they worked or not.

The point of this is that in time when a symptom finally goes away and time goes by. When that symptom appears again you have a log of what worked for you the last time.

I even have a few pages in my book just for Steroid treatments. What tips and tricks I found that helped me get through the side effects.
------------------------------------------------------------------------------------
Example:
Leg spasms Pg. 3

Leg spasms

1)1/07 Try stretching - feels good to stretch but within a few minutes pain worse.
2)2/07 Ice packs on legs - Helps a lot
3)3/07 Baclofan dosage - helps


Pg. 4 Steroid Treatments
1) 3/07 get bedding and medical sheet ready for nurse
2) 3/07 get Cinnamon ball candies - helps with metallic taste
3) 4/08 while getting the treatment lay in semi sitting up position ( found that
the metallic taste isn't so bad
4) 9/08 Take meds right before nurse is coming so I can sleep through
the treatment. My side effects weren't so bad.
5) 9/08 When I get the HUGE energy burst try to relax and dont use up that energy.
It is fake energy that will catch up to you once treatments are done.
------------------------------------------------------------------------------------

4) Have an "Emergency Bag" ready and put it somewhere that your FF knows where it is. In this bag have a a couple days worth of your meds. A copy of your E.R. medical sheet. Sample sizes of your hairspray, lotions, shampoos and conditioners. small thing of perfume, make up, a razor, toothbrush, ect... you get the point.

The purpose of this is for exactly what it is called... EMERGENCIES !!!!

Whether the ER is for you or someone else that you have to get up and go you will have that ready and it has your meds in it and everything else you need along with your ER card if you need refills or whatever. On the front of this bag you want to pin a note that says... "GRAB SOME SHOTS" - since the shots have to be refrigerated obviously you can't have those sitting there waiting.

The stress of Emergency situations can bring on your symptoms... The more you are prepared the better.

I have so many Tips and tricks but If I write them all down now you would be very overwhelmed and also it wouldn't keep you coming back for more information!!!!

Numbness in my Legs today!!!

I woke up this morning and felt pretty good. I did the dishes, some laundry, and some Blogging however as the day has continued and of course it is only 11:30 in the morning. My legs have this horrible numbness to them. They feel like rubber bands. It makes me nervous when they are like this especially when going up and down stairs. They feel like jello. The good thing with this sensation is there is no pain. Yes it gets to have an irritating sensation but not pain. At least not at this point. Later they will get to the point where... You know when your foot falls asleep and you walk on it it is numb but prickling pain....Well that is how my legs will feel when the numbness sensation goes away. So that leads me to think to myself......Do I continue doing things that need to get done because I am not in pain yet or do I stop now and go lay down knowing that once I lay down then I will be down for the rest of the day?????? Usually my motto is "Be proud of whatever you accomplish each day no matter how big or small" But I never know when to stop and just be proud.
Well, I will spend some more time doing what I am doing and then I will stop.. I will continue this later. Seems I have a lot to say today or at least a lot on my mind today!!!!!!

Creative Custom Canes

It started the day I was supposed to go to my daughters 8th grade graduation. I could barely walk. I didn't want to go to it because without a cane I would never get in the door and I was so embarrassed to be seen with a cane and embarrassed for my daughter that her friends would see me with a cane. Even though over and over she told me that she wasn't embarrassed she just wanted me there. My Mom came over and I was in tears I told her that I wanted to sneak in and not be seen. So it just happened that there were chairs right when you walked into the gym. I sat there with my Mom, my Husband, and my two sons. I thought we were safe. Of course within a few minutes there was an elderly lady sitting right next to me with the exact same cane. I wanted to dye. You have to remember that I was only 33 years old. Anyways, the next day I was on a mission to find a cane that would be easier for me to except using. One that didn't make me feel so old. I didn't find anything. so... I made a cane for myself. I went through all my pictures of "FUN" memories that I have had with my family and designed a cane with them. I loved it!!! It would make me laugh and smile when I would look at it. After going to a few places with it, people started asking me where I got the cane. They weren't staring at "poor old Tara" They were staring at the cane in amusement. So I started making them for other people. I then started getting paid for making canes for other people. I wish I didn't need to charge for them because technically all I want to do is to make them for people so they too can be happy. However, I hadn't worked in over a year and a half and I needed the extra money to help pay for medicines and/or whatever needed to be done. I then designed my website. http://www.creativecustomcanes.com after awhile I started putting a lot of information about MS on it and now it is not only about the canes it is about MS. LOADS OF INFO!!! If you get a chance take a second to stop and check out my website. It might be helpful.

Just remember that just because you have MS or any disability. You can turn it around and make it more enjoyable for you...

My link is also on my sidebar.

Sleeping problems and Muscle spasms

I was just reading another Blog about having problems sleeping and muscle spasms and it made me think of some information that I was given and found that helps. I want everyone to know that I dont promote for just any company... I promote what I have found that has worked for me.

As you all know I have MS and struggle a lot with muscle spasms I take over the normal amount of Baclofan and sometimes takes the edge off. But my Nero says the only thing left is to get the Baclofan Pump. My feeling on this is that once you have a catheter in your spine delivering drugs to you.... It is permanent and I'm not sure if it is dangerous or not but it doesn't sound like fun. Don't get me wrong though... There have been some days lately that I have seriously thought about it.

Here is what I found that works. A lady at the General Nutrition Store (GNC) told me to try this product it is all natural it has helped many people with Fibromyalgia which I also have (at least one of my Doctors thinks I have) it also helps with Restless leg syndrome, it also has a calming affect on your nerves, and to top it off. In larger amounts it also helps the digestive track.

It is called CALM. Calm is a powder that you add to a small amount of hot water. It fizzes a lot and then calms down you can then add more hot water to drink like a tea. My own personal opinion is to only make a total of 4 oz. because after a while it gets hard to drink. I have the Lemon flavor and it tastes ok to me. kind of sour and sweet. here is the website link for you to read about it.

http://www.petergillham.com/pdfs/Calm-Organic.pdf


Now on to the SLEEP problems. That same lady also recommended a product called Valerain capsules. Now they don't smell good but they work well and again all natural. Being that they are all natural they are not addictive. So here is what they do... You take 1-2 capsules a hour or two before you want to go to bed. Within that time they slowly make you sleepy feeling and able to fall asleep much easier. The best part is that they give you a very good sleep. I can now get 8 hours of real good sleep. I love them.

Anyways, I thought since I found out about these products and they helped me I would pass along the information and maybe it will help someone else that might read this.

Just another day!!!!

So, Friday my legs were in really bad shape. I didn't need to go to work that day so I chose to stay home and rest. It was beautiful outside. The very first really nice day in 6+ months. So I decided what is the difference if I stay in bed or if I laid outside and actually was in the sun for a little bit????

Well, let me tell you what happened...... I got extremely sunburned!!!! I never burn. The only thing I can think of is that maybe my meds make me more sensitive to light or something. Anyways 3 days later I am still burned. It's crazy.

Other than my normal symptoms I have been whining about..... No new symptoms have appeared. My bowels, I am not too sure about. They aren't being productive again however for the first time in a long time they are making gurgling noises all by themselves...So I will wait it out a little bit and see what happens. I do often wonder if there is anyone else with MS that has their intestines shut down completely also for extended periods of time and if so what do they do about it??? The Doctors all agree it is the MS and that is just where my antibodies are choosing to attack. Now in my opinion that is horeshit!!!!! Ya know we MS'ers never get a break from this disease and I am choosing not to do the steroids due to the SERIOUS weight gain....BUT... to make me so bloated that sometimes I have to wear maternity clothes???? Now that is ridiculous!!!!

Another not so good day!!!!

Well, today hasn't been any better than yesterday. The prickling sensations haven't been as bad today. However, the muscle spasms and tightness around my arms and legs have been horrible. I have found that when these symptoms are here then the fatigue really kicks in. I used to have sever fatigue up until last October when I had another exacerbation. I had to go on the steroids again. Funny thing is after the side effects went away the fatigue disappeared. I suffered from severe fatigue for a year and a half and then after a severe exacerbation all of a sudden that symptom disappeared. I thought it was weird but I was really enjoying it. Of course my Nero said that it won't last long. When you have I.V. steroid tx. The steroids can last for 6-8 weeks and then it starts to wear off and not to be surprised or disappointed when the fatigue comes back. I was a little disappointed but decided I was going to prove him wrong. I did!!!! Up until now I haven't had the fatigue that bad. Over the last 3-4 weeks I have noticed it coming back more and more. I am still working some days 2 hours and some days 6 or 7 hours due to fatigue. I am hoping that will go away again so I can continue working. I went a year and a half with out being able to work and living on just my husband's income (which is absolutely nothing) and trying to raise 3 kids and buy medicines and groceries. It was extremely difficult and we will be paying off debt for a long time because of it. But with me working now we haven't needed to borrow money in a long time and we have been able to pay bills (on time) buy my meds and buy groceries. I know it's not a lot however it is way better than before. So I need this "flare up" to go away soon so I can get back to working again more regularly. I know there will most likely be a day in my future that I will not be able to work anymore. Even the Dr. said that I am heading down the path of most likely needing a wheelchair. I will fight this to the end. I know that there are a lot of days that I should be in a wheelchair due to the pain of walking however, I still go on and push through the days no matter how bad the pain is. I don't know if it is me being stupid or stubborn. I just happen to be one of those people that if you tell me I can't do something I will prove you wrong no matter what it takes. Anyways that is all for today. Hopefully tomorrow will be a better day so I can stop talking about myself and get on to some other topics.

What I have been dealing with lately - Exacerbation

Today I am going to give an inside view of what has been going on with me lately.

I have been going through an exacerbation (flare up) since January. Not the normal flare up that I usually go through when I finally break down calling the Nero for help. Which always leads to the I.V. Steroids and 3 weeks of my life trying to get over the side effects along with the 35 pounds of weight I gain in those 5 days. The typical treatment is 1000mg I.V.'d each day for 5 days. I made the choice in January that since it wasn't affecting my vision and making me nauseated between the blurred vision and the vertigo, I would try to ride this one out.

Symptoms:

- My muscle spasms started becoming even worse which I didn't think was possible.

- My intestines shut down making me not be able to have a bowel movement and is causing my stomach to bloat out and looking like I was 18 months pregnant. I have had this happen 2 other times and the Gastro Dr. Doesnt even know what to do. They have tried stool softeners, laxatives, mineral oil, Magnesium citrate (double the dosage, enemas, extreme prescriptions and none of this has worked in the past so what is the point to go now? Last year it took 6 months to get my system to start working again. I ate salads, fruit, juices, water, etc...I even tried the yogurt drinks that is for helping the system and nothing worked. One day last year someone told me to try Flaxseed. I obviously was doubtful but willing to try anything and GUESS WHAT??? It worked!!! My stomach stayed bloated for a few months from being stretched out for so long but finally went down. Of course when this started again in January it didnt work. I did try the softeners and laxatives but nothing. So I started bloating more and more and of course I need to add that it is painful and uncomfortable. So recently the same person who recommended flax seed recommended some tea called SMOOTH MOVE. I went to the GNC and bought some and it worked a little. The lady at the GNC also recommended a new product called "CALM". Between the two they are starting to work.

I need to add that "CALM" is fantastic.... It is natural magnesium. This product has helped some with the muscle spasms and also calming me down from stress. It is an excellent product. I higly recommend looking into this.

So yesterday I thought... Tara you may be on the other side now and going to get through this without the steroids. However, today I started getting the tight band feeling around my legs and arms along with prickly sensations in my fingers, hands, arms and neck area. My muscle spasms are so bad and are all over my body. Even my feet. I am really starting to worry if this is going away or getting worse. I guess only a little more time will tell.

I don't recommend NOT taking the steroids. Its just that I tend to have way worse side effects from them and it takes so long for me to even start to recover from the effects. The Steroids do solve my flare ups very quick its just the side effects for me are so horrible. That is why I made the decision I did. Anyways I am getting very frustrated and tired from all of this. Cross my fingers that it is going to start getting better shortly.

That's all for today!!! I couldn't think of anything else to write about because today has been so overwhelming. And I promised that I would write the good the bad and the ugly. Whatever is on my mind each day.

MS for Dummies????

Ok..So did you know that there is a book called MS For Dummies??? I laughed when I saw this at the book store. You mean to tell me that there is a book telling us "MS'ers" the step by step guide to learn about MS????

So... I bought it!!!! LOL

Yes this book has a lot of good information in it however we live this everyday of our lives. By the time you want to learn something you are already experiencing it. So I do recommend this book but not for the fellow MS'er but for Family and Friends of ours.

Which once again brings me back to the subject of SUPPORT. It is so important for F&F to learn as much as they can to understand and to be prepared for whatever it is we might be enduring. Learn what an exacerbation is and why we have the massive doses of steroids I.V.'d into us. Understand that we are giving ourselves shots for the purpose of "Hoping not to cause permanent damage and also to hopefully lessen the frequency of exacerbation's"

*There is not a cure for MS at this time. They are working very hard to find a cure but all there is for us is treatments to TRY to lesson the frequency and the severity of the disease.

*The medications we take are to TRY to lesson the pains we have or the symptoms we are having on a daily basis.

* MS is crazy and sporadic. I like to look at it as a "New Surprise" everyday. It is not unusual for someone with MS to be able to walk and see and do things normally one day and then the next day "Surprise" YOU CAN'T. And then it could be later that day or 6 months later or it may be forever before the ability comes back again. You never know when it will happen and you never know when it will be over. Those would be times that you as F&F can visibly see.

* There are many "BEHIND THE SCENES" symptoms that occur a lot more frequently. For instance the rolling muscle spasms (in the book they refer to that as "Spasticity"). Unless you are getting the powerful spasms that jerk you forward F&F can's see what you are going through.

* Or the best one yet... Pins and needle sensations... "Behind the scenes"
unless F&F see you walking around naked because your clothes hurt your skin.

* Or when your bowels shut down or just the opposite along with the bladder problems when no matter how fast you run you cant get to a bathroom in time. I guess that one would be visible and embarrassing however its happening to us not them.

That is just a a couple symptoms but why it is important for F&F to get books and try to learn as much as possible to assist us or at least to understand. No the rest of the public will not be understanding but it is important for F&F to learn and to be as understanding and helpful as possible.


I will talk more about this later but I saw my book sitting there and this popped into my head so I thought I would share.

Possible MS... What does this mean???

You go to the Doctor with some weird sensation or symptom and the Doctor says "Lets Run Some Tests and See What is Going On"??? A few days later the Doctor calls and says we need to run some tests possibly an MRI or blood work or better yet we want to do an Spinal Fluid test. Then the Doctor says "I think you may have MS but we need to run some more tests". First of all the Doctor doesn't give a lot of information because they don't want to scare you with what it is and what this disease might do to you because of course if you don't have it then what a waste of fear or time on their part. The doctor lets you leave thinking the absolute worst or maybe you start rethinking your symptoms and maybe they really aren't that bad. Or better yet you really start regretting even telling your Doctor.
Either way, you can't take it back and you can't ignore what the Doctor just said. So within a few hours you will probably find yourself online looking up what MS is and talking to people about it and they get shocked and scared which in return doesn't help you at all either. As the days pass your symptoms keep coming and either are staying the same and persistent or maybe even getting worse. Unless you are one of the few lucky ones who get a diagnosis right away. Most people sit for months or even years waiting to find out if they have Multiple Sclerosis or not.
During this entire time you keep having symptoms and aren't getting any answers. These symptoms can be mild or very major and debilitating. Your mind is praying everyday that the Doctors will give you the answer and be able to "FIX" you. One day the Doctor calls and says he would like you to come in and talk about all the tests they have done. You go in and he tells you that most of the tests are inconclusive but he believes you have "POSSIBLE MS" And that he now wants you to go to a Specialist who will look over all your results and symptoms. The Waiting game again.....
Now you are heading to the Specialist who has had time to look over all your results and does a 10 minute exam and says "Yep... You Have MS. Again basically just telling you this horrible news and then says your Neurologist will be calling you in a few weeks to talk to you about the shots you will have to take and possibly different or more medications.
You walk out of there with all sorts of crazy feelings:
1. Relief - you finally have an answer
2. Anger - that it took so long to get an answer and a Specialist in 10 minutes can give you the answer.
3. Disbelief - That this is the correct diagnosis
4. Denial - This can't be happening or "Why ME"
5. Scared - of your future and what this means for you and your family?????
6. What the hell did he mean about shots I will have to take and give myself????

Like I said some people can get an answer right away but but for most of us this is a very good description of what the diagnosis of MS is like for most people.

In the next few blogs. I will talk about:
- The initial feelings I call it the grieving process
- Some of the symptoms
- Tips and Tricks I have found to have helped with some symptoms
- Acceptance and moving on
- Getting Back on your feet
- Getting organized
and much much more........

I feel that what I went through and what I have learned over 3.5 years would have been helpful to me if I would have been given some help and direction. So that is what I plan to do. Along with keeping a journal of "Living Day to Day with MS" And I will give you a glimpse.... There will be good days, bad days, and worse days.... But one piece of advice I can give you now is to Treasure your Good Days.

Support System for someone with MS

Today is just one of those days!!! Two of my children are sick with the flu. So I started the day by going into work for just a couple hours. Then came home and did the dishes and laundry. It's been gray and rainy here for about 3 days now and it is weighing on me. I don't know if weather changes affect everyone with MS but for me it makes all my bones feel like they are going to shatter. It becomes very hard to walk. So even though it doesn't seem like I have done a whole lot today...I am worn out. This is one of those boring days that I have worn you all about. So instead of telling about my day I think I am going to talk about having a good Support Group.
Like we all know MS is the invisible disease. My most dreaded comment to hear from people is "BUT YOU LOOK SO GOOD". I have heard that a lot in the last 3 years. I might look good to all of you but I feel like hell on the inside. Most people I talk to that have MS have agreed that Family and Friends absolutely do not understand MS so they are not the most supportive. To the point that a lot of MS'ers lose some of their friends and family. It is bad enough having a disease like this but to lose family and friends makes it so much worse and adds to the stress and depression of MS.
When I was first diagnosed I was told by my family that I should join a support group. So I found a local support group and I was terrified. Many of the people there had had MS for years and much more further progressed then myself. It scared the crap out of me. It had only been about a month since my diagnosis when I went. I swore I would never go again. In time I started finding support online. Sometimes this wasn't bad because you didn't have to physically see the other person however keep in mind when talking to someone online you can be given bad information. I would never be the one to tell someone what to do. You have to find what works for you. I became a part of a huge group of Fellow MS'ers on Myspace and still to this day have kept in touch with them.
I will give my two sense about family and friends and Support from them. In general there will be a few or a lot of people in your F&F that will want to support you in every way they can. The problem is that they too don't know where to turn to find information to help them understand how to help you. You will hear all sorts of comments, suggestions, ideas, etc... of what they think you should do or be doing. It may be from someone they talk to that has MS or knows someone with MS. It may be an article they read or it could be just something they feel you should be doing. I heard a lot of this and I would get so frustrated but then I learned that everyone loves me and is just trying to help. I still would get frustrated but just found a way to let it go in one ear and out the other. I did find a website that I really liked and it is good for you and also F&F. It is called MS World the direct link to it is on my site but the web address is http://www.msworld.org It is full of info and is a support group run by people with MS. I highly recommend it!!!!

Standing up for yourself at work.... continued

Well the day has come to an end and I am ehausted. I made it through the day without too many problems. I went to work with extra clothes so I could go to the wake for my friend/coworker/hopefully soon to be bosses Mom. Of course I went to walk out the door to get into the car and it is down pouring outside. I go as fast as I can so my hair doesnt get messed up due to the fact that I was intending on going to the wake right from work. I get to work and of course I have to do some errands that happen to be outside. At this point is is puring buckets of water out there and the wind picks up while holding my unbrella which gets blown inside out. And now I am getting dumped on. A very great start of the day. It was kind of busy today at work and the day was going pretty good until about 2:00 then of course everything stops and I have everything done. I sit there at the desk starting to feel the fatigue and muscle spasms but cant take the meds because it will make me tired. So I sit there watching the clock. So of course my mind starts wandering.... What am I doing here???? I QUIT a week ago. I dont technically work here..... I am so bored I shoud just go home....Boy the clock isnt moving very fast..... Please let the phone ring....And then all of a sudden it dawns on me.... I am getting paid to sit here and do nothing. I could make paper airplanes and fly themm around the shop for the next 2 hours and get paid for it... It's not like my boss can fire me!!!!! So here is what I decide to do. I get online and start playing Soduko. I finished 3 whole Soduko puzzles. I now have a half an hour left. I start closing things up and getting ready to change my clothes when I finally get a phone call from my youngest son that he is throwing up and his head really hurts. So now it's RUSH time. I got dressed, ran to Walgreens got some motrin and sprite for my son and then went to the wake. Of course I get there right as it starts. So not many people are there. I hate Wake's. So I said my condolenses and then left came home just in time for my spasms to start up. One spasm happened in my leg so hard that it literally jerked me forward. I get Muscle Spasms really bad. My Neurologist has already talked to me about the baclofan pump. To me that is so "forever". As much as I hate the spasms and they keep me in bed a lot I dont know if I am ready for the pump. We will see. Anyways my youngest is asleep right next to me. Of course I am praying I dont get sick now. But I am now going to take my meds and my shot and go to bed.