Wednesday, March 25, 2009

Wednesday

I recently posted something a little negative about MS at another website. I was having a rotten day. My legs hurt, had bad cog fog and the fatigue was overwhelming . I came home and thought it would be beneficial to post. Nothing like a good old vent once in a while.
Now mind you, I try to not be a totally negative person. Yes, I know there are people who have it so much worse. Yes, I know I *should* be thankful for all the positives that I do have.
The reality is that this disease sucks. It sucks the life, the energy, the optimism out of you.
Forgive me if I occasionally discuss some of the sadness I feel on days where I wake up feeling like I never slept.

Saturday, March 21, 2009

Hello!

Hi.

This is my very first blog here. I found it quite by accident. I was reading a post in a forum I frequent and wanted to respond to a blog..I ask in advance that you be patient with anything that doesn't make sense. I have a lovely thing called *cog fog* which often times has me typing grammatically incorrect sentences. I apologize in advance.
I am 49 years old and up until 2006 had a pretty normal life. In April 0f 2006 my world changed forever. I was diagnosed with MS.
I believe I had the nasty disease earlier though. I felt fine until about 2000, when I first moved to Pa. I started to feel very tired. I assumed it was because I was approaching 40, working full time with two children. I noticed when I went to the store that every time I would get anything from the bottom shelf I would get very dizzy upon getting up. Again I brushed it off. In 2004 my eyesight took a turn. The eye Doctor said I was getting older, sigh. I went from no glasses to bifocals. One day I woke up and my eyes were blood red. I scared one of my students who said, "Mrs. M your eyes are bleeding." That time the DR. said it was dry eye syndrome and that he suspected I had some immune issue. He wrote to my family physician but that was the end of it.
Then in early in 2006 I began to spill things a little bit more than usual. Since I have always been a bit of a klutz, I attributed it to that. March rolled around and I fell a few times. I never thought anything of it. Then one day I started walking into things on my left side. I woke up one morning and had no use of my hands. I tried to get up and could not. My whole left side had no feeling. I went to my pcp right away and he ordered an MRI. The next day he called and asked if my husband and I could come in asap. I knew this wasn't good news. He showed us the pictures of my brain and said it appeared I had a tumor in the right hemisphere of my brain. Of course it had to be in a place that was not easily reached, a *high price real estate area* as he called it.
He scheduled me an appointment with a neurosurgeon for later that week. I never made it.
the next day I was home. I collapsed on the floor and laid there for hours until my husband made it home from work. I will spare you the details, but it was a rather unpleasant physical sight . John came home and took me to a hospital in Philadelphia. They admitted me and told me that they couldn't address the brain issue because I also had a problem with my heart. Apparently I had something called A-fib. I had no idea. I was in the hospital for 12 days. First in ICU, then in Cardiac care, and finally in Neurology. They moved me there after they did some procedure to re-boot my heart. I had tons of tests, including a biopsy of my brain. I was released on Mothers Day of 2006. After 6 weeks of being told that my results showed abnormalities they couldn't diagnose, they sent samples to other universities. Finally I was told that I did not have cancer, but I had a lesion of dmylination which was Multiple Sclerosis.
It was pressing on the nerves which control my left side. 
Now it is 2009. I am still mobile, but have lost 40% use of my left side. I try my best.
Some days are harder than others. Everyone who has Multiple Sclerosis is different.
For me, fatigue is a huge symptom. I wake up feeling like I have been up for 2 days. I walk with a bit of a limp and if you didn't know me you might think I have had a little too much to drink.
Most days I have aching in my legs. My sight has deteriorated a lot so I seldom drive at night, but I consider myself lucky because a lot of people with MS don't drive at all.
I take a lot of medicine daily for all of this. My favorite is my daily ritual of Copaxone. It is a shot which I administer each night. Oh the lumps!
I 'm not sure what (if anything) I hope to accomplish with this blog. I figure even if one person
gets a little better understanding of Multiple Sclerosis, than it's something. Thanks for taking the time to read this.