Please Take Part in the Polls of the Week

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



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

MS Exacerbation.. You are Never Alone!!

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

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

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

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

Where did I go? Who Am I Now?

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

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

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

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

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

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

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

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

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

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

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

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

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

Intestinal problem Newest Updates and Some Answers

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

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

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

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

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

That's all for now!!!

MS and Smoking! How do you quit?

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

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

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

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

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

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