Changes in MS Symptoms

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

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

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

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

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

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!!!

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

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

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

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

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