Hello everyone. I am new at this, so please bare with me. I never thought I would actually be blogging about my MS life. I have hid my disease for so long. Not many people know I have this disease. I can count the people who know using my hands. There is my mom, dad, brother, husband, best friend, and 3 co-workers. Eight people. I have a big family so eight isn't a lot. My grand parents, aunts, uncles, cousins etc...don't know. I have been contemplating how I should tell them, but it's very hard.
A part of me, doesn't want to tell them because I don't want them to see me differently. Just going to the internet and typing in MS can be very over whelming. And I know that's what they'll do because that's what I did when I found out I had this disease. I was horrified instantly thinking that my life was over. I thought I was going to be bed ridden for the rest of my life. But soon I found out, through my doctor, care nurse, and others living with this disease that life with MS is manageable.
At this time, I' m feeling good. I have not had an attack in two years. I occasionally feel fatigue and some pain in my hands and knees, but overall I am doing well. I have been taking Tysabri for the last 18 months. I can honestly say that this medication has agreed with me. I have never had any weird reactions or side effects from taking it. This medication is fairly new and is still being watched closely by the FDA . During it's clinical trial two people died from PML (progressive multifocal leukoencephalopathy). A severe progressive neurologic disease that can lead to death. I know what your thinking, why take that chance.
Trust me it wasn't an easy decision, but at the time I was barely able to stand for more then a minute and walking was almost impossible for me. My neurologist told me about this medication and explained very clearly about the pros and cons of being treated by it. I thought about it for a long time asking my dad and husband about there thoughts and searching about this medicine any where I could. I finally decided that I didn't want to feel the way I was feeling and that I could atleast try it and see if it could help. Needless to say, it has. I am grateful for it.
It has brought me back to being me again (I won't say normal life because what is that any way?). These days, I am feeling good and thank God everyday for just being able to do the little things that many take for granted. I don't want to be rich, famous, or a celebrity. I just want to be able to live my life how I choose. And nothing, not even MS, will stop me! I have MS, but MS doesn't have me!
Monday, July 21, 2008
Today's the Day
Posted by MS. Zen at 6:45 AM 2 comments:
Labels: chronic disease, ms, multiple sclerosis, tysabri
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