Michelle’s MS Story
I hesitate to write my story as it is yet to be finished. Today I write about my journey into this new reality. I was diagnosed on January 9, 2013. I was lucky. I had been battling symptoms for years and often excused them or denied their existence. I am retail management by trade. When my hands froze into lobster claws I rationed that it was counting all the money for 12 years. The leg cramps I decided were because I was in my thirties and Diabetic. The fatigue was because I was too fat and diabetic. The fact that I couldn’t remember things unless they were “earth shattering” was an excuse I used for my bad memory.
I hurt my back Feb. 4, 2011. I herniated L3-L5. I also herniated T-3. They said I had degenerative disc disease. They said not to pay attention to the white spots, “There’s apparently a problem with our MRI.” I went through two hundred hours of physical therapy. Luckily I was approved fairly quickly for disability. We all reasoned that a surgery would make me better and put me back into the work force. My job at the time was waiting patiently for me to return so that I could assume the assistant management of womens role. I never made it back. After a year they excepted that I wouldn’t return. I was set up for surgery but my husbands insurance cancelled three days before it was done.
I started having dizzy spells when changing position. Just take a right while walking would spin my head. For some reason I was running into every doorway I could find. My right leg always felt squishy and not all there. I gave up and went to a general doctor feeling that I probably had an ear infection. My ears were fine. I was however running a temp of 101. He took loads of blood to see what he could find. I told him that I was born with a Chiari Malformation, where my brain extends past my skull. The two of us thought it was possible that my back injury had pulled my brain out to a pont that it was messing with me. I saw a Neurologist. She agreed it might be possible. October 2012 I went to have an MRI. In November I was called back. I expected to hear that they would have to stuff my brain back in my head. Its crazy what you decide you can deal with! She met with me and looked at my chart. She had me do a series of walking moving talking repeating and hand gestures. She looked at me with hang dog puppy eyes. I had no idea that my hands were not moving correctly! They looked and felt right to me. I had no idea why I all of a sudden couldn’t walk on my heels. I figured it was the shoes! She said, “You have 32 lesions in your brain. You performed poorly on all your screening today. These two facts lead me to believe you have Multiple Sclerosis. Also known as MS.” I said “Do what? That wasn’t even on the table! Where did you get that?” She looked at me sadly and said that she needed me to do another test a lumbar puncture to clarify. She also took another truckload of blood and contacted my GP for what he tested for. I went for the lumbar puncture right after Thanksgiving. I called in Mid december but my neuro office didn’t have the results. This was aggrevating because I am in retail management I am used to fast action. My husband calmed me and said just let us get through Christmas. After Christmas came New Years. The wait was killing me!!!! I went and got the results myself. I had already done research and new reading the results that 12 oligoclonal bands were present I KNEW I had MS. I sat with my husband that night and told him what I knew. He seemed in denial. I of course announced that I had this disease and it could get bad so I told him he should pack his bags and just leave. I told him I didnt love him enough to fight my disease and try to keep him passified and happy. He didnt go. He wouldnt go.
I decided that my Neurologist had the entire holiday season to not deal with me. I figured it was my turn!!!! So I went to the Neuro with the papers in my hand. She had not recieved the news yet. She read my papers and again looked very sad for me. She gave me a huge handfull of books and said I needed to pick my medicine out from these books! I put the books in the car and came back in for even more books. While I was in there there was a woman in a wheelchair having heck getting back into a sweater she had removed. She was very angry and frustrated. I knelt down in front of her and said to let me help. She sat there cursing her sweater cursing her wheelchair asking me if this was funny to me. I was quiet and nice and told her not to worry we can fix this. As she was putting on such a bold obnoxious display my neurologist opened her window. She asked me if she could tell her what she just told me. She said, “M%$#@^%$ I just told this young lady she has the same disease you are fighting.” She closed the window and the lady I was helping was mortified. It didnt sink in with me. I just took my books and went out the door. I left the office and drove about 3 miles away when I realised I was about to freak out. I pulled into a parking lot and started looking at the books. The first ones were about interferons. I was shocked!! I didnt have hepatitis. Why would they give me this? Then what my neurologist said flashed in my head,” I just told this lady she has the same disease you are fighting.” WHAT!?!?!? NO! That lady had braces on both arms! She had a weird brace on her leg with a small box calculator thing on it! I am not that kind of person!!!! Oh my God!!!! OH NO!!! NOOOOOOO!!!!! My freak out was interrupted by a cop at my window. I rolled it down and let loose on him I tried to hand him my books. I asked him what the hell am I supposed to do? I am a MommY!!!! I told him he was supposed to help so F***ing help!!!! He looked like a swatted puppy. He said he would just go over there and sit in his car to make sure I was safe. I could leave when I was ready. I told him NO! Take me to jail. Lock me up. He patted my shoulder and told me I needed a computer and more info and walked away.
Ok. So I made it to my computer. I researched all day. I cooked for the family and kept researching. I was at the computer for 4 days. The kids just played their games. My husband just did whatever husbands do when their wives are obsessed. I called the MS society and told them I was a wife and Mom with 2 kids. In two days I had a packet with info for me and the kids. I wasn’t going to tell the boys. They were only 10 and 12. I wasnt going to tell them. Turns out I couldn’t anyway. I lost my ability to speak like a normal person. I was stuck stutterring and searching for words. I could not talk hardly at all. I was left with no choice but to hand my boys the kids book about What is MS. My oldest was devestated and angry and crying. I knew this was how he would react. My youngest said Its OK mom. Your going to be fine. Two days later I had a call from the school. Apparently my youngest didnt think I was ok. He turned into a terror at school. They called and asked if soomething was wrong. I could hardly speak to tell them but I let them know I have MS and he just was told. I texted his teacher and she made sure to get the school counselor involved. They got as much information as they could and spent time with my youngest to let him know I was going to be alright. I am so thankful for the love that the school showed my youngest!
“Why did God do this to you?” my oldest asked with tears in his eyes.”Yeah Mom why you?” My youngest asked. How do you answer that? What do you say to your kids when your own faith is waverring? I told them it was because God knew together we can fight this disease! I said God only does this to the ones he knows can fight! I didn’t want to hurt their beliefs in God. My oldest had just figured out there was no Santa. I could’t take God away too! I sit here today with the knowledge that now my oldest has lost all his beliefs because of me. Yes. This is my fault. I begged God to make me a Mom. He had to know that this was coming. I was told that I had probably had this fifteen years. Why would God give my kids a jacked up Mom? My voice came back after about 10 days. This didnt change the fact that I had to go to traffic court unable to speak well. I ended up with a twenty dollar fine for equipment instead of the failure to stop for a train ticket they were trying to give me.
Valentines was a bad holiday for me. I did my yoga and was sore and stiff. I thought a hot bath would help. My neuro told me not to do this. She said hot baths were bad for people with this disease. I said the only thing that ever happens to me are some white squiggly digital lines in my vision. I was wrong while sitting in the bath I had a feeling of doom come over me. I knew something was wrong so I let the water out of the bath. When I went to get out the left side of my body started to go nuts. It was reaching for things and kicking and I yelled at it to stop!! What the hell was happening? My Valentines morning was spent crying on the floor for at least an hour.
I spent about six months slamming into doorways. I fell and broke my arm in March. I walked my first M.S. walk in April. I raised $594.00 by myself. This first walk I had to do by myself. I know this is not a sprint or a marathon. I know this is forever. I did it alone because it is mine. I do have supporters. I know I do. I also know that they will not be here forever.
My son decided to do a five hundred point paper about Multiple Sclerosis. He is more worried than he was. I didnt know that he was going to do this until he had more information that I was ready for him to have. I have been praying again. Praying to God to give him strength. Praying to ease his private sufferring. I haven’t prayed like this in along time!
So this is so far my journey. It continues…
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