On the 2 year anniversary of me being diagnosed with MS-I want to encourage you to donate to find a cure. You can do so by donating to my Walk MS Team-all proceeds go to the national multiple sclerosis society. http://main.nationalmssociety.org/site/TR?pg=team&fr_id=19513&team_id=333432
Also, check out a story I wrote about how I was initially diagnosed. I am lucky to still be feeling healthy and happy 2 years later. Thanks!
Friends/Family,
I suppose I just need an outlet tonight, a rambling forum, the active listening ear of the endless void that is facebook.
I have Mutliple Sclerosis and this is a story (not very interesting mind you, but a story nonetheless).
The prologue is simply a trip to the dentist and a deep cleaning. And then a trembling in my face. Nothing but a reaction to the numbing, I was sure, so typical of any such cleaning. The story starts out with a normal workday, albeit one that's starting a hour earlier than usual. I was feeling a little strange after a long night spent with friends. I attributed this to simple fatigue and lethargy nothing a diet coke or pepsi couldn't cure. So, pulling into the unglamerous north parking lot of my work did not portend anything, but another work day. When I stopped the car I lost control of the muscles in my face. The right side of my face simply tightened up in a stroke-esque pose that lasted 1-2 minutes at maximum. I panicked as nothing like that had ever happened to me. I went home and rested thinking my body was simply out of wack. That night I went to an instacare clinic. I described the odd twitching I told the Doctor that I called the dentist several times and the Dentist said nothing like that had ever happened before. The doctor was confounded. No flu symptoms, no pneumonia or drug use. He advised that I see a specialist. I thought this superfluous, but went anyway.
I had an EEG. The neurologist said it could be one of many things. Some worse than others. MS was casually referenced. I also had a glucose test at the Davis Hospital to see if it was some blood abnormality. I had 5 large vials of blood taken from me in 4 hours after fasting for 24 hours (a very difficult thing to do). Sometime during that time I broke down physically and emotionally and ended up in the ER for the day. My body was simply overtaxed. Nothing major came out of it. I learned that I have hypoglycemia-nothing I didn't know. Half my body went numb about every other day at varying times.
I did an MRI soon thereafter. Actually enjoyed it-a sci fy coffin of sorts. The news came while I was at work. I answered the call cheerfully and was not met by small talk or pleasantries but by: 'You have Multiple Sclerosis'. No explanation, no post-pleasantries, just that and a 'we will talk soon'. I was in my office with another co-worker at the time. I felt like breaking down and did a bit. He noticed, but said nothing-the kindest thing he could do. I walked over to my then immediate supervisor to say that I am going home. I broke down in his office. He played it down. I cried through my half-smile as I walked away.
My mom was in denial. Couldn't be that. probably a parasite or something else. something less. I agreed to do a 'Spinal Tap' procedure, i.e. a good-sized needle stuck repeatedly in my spine to collect spinal fluid. I have never been a fan of needles, so this was not a light choice. The procedure was agonizing. The Neurologist missed several times and the painkillers did not work. I thought I screamed, but they said I was their most quiet patient. I was in bed for 3 days. My friends rallied around me. My family was never closer. In an odd way, I was happy. Scared, but so happy that so many people loved and cared about me. After 3 days, I started moving around again and went back to work. Smiling like nothing happened.
The diagnosis was confirmed and reconfirmed by another Doctor. Relapsing-Remitting Multiple Sclerosis (http://www.nationalmssociety.org/about-multiple-sclerosis/relapsing-ms/relapsing-remitting-ms-rrms/index.aspx)
This was a good prognosis-better than the progressive sub-set, worse than nothing at all. I have white spots on my brain, legions if you will, where my own immune system has attacked the fatty covering of my neurons (mylein sheath). This slows down and otherwise screws up neuronal signals more or less [there is much more to this]. The white spots are a result of the lack of myelin in those areas. Basically, there are many treatments and precautions (keeping active, avoiding too much caffine and drinks, no smoking, low fats, etc) and I won't always feel it. My hands get numb at times, sometimes they sting and my feet hurt. I'll get weird pains and fatigue most often. But the treatments have helped.
I use Copaxone, which I inject daily into different spots of my body. I am mostly use to this, but am so sick of feeling like a science experiment. It typically hurts to inject and leaves bruises and welts. Some days I don't notice it, but I think my body is not happy with daily shots. I call it 'shooting up' and that usually makes me laugh. I never thought I'd be a veritable drug addict haha
This is simply a snapshot of it all, but yeah it is both scary and increasingly familiar. Most likely, nothing much will ever happen to me. I might lose feeling in a hand or a foot at some point, akin to a 'sleeping foot' but more permanent. Perhaps, nothing will happen, perhaps more. It depends on the treatment. It works nearly 100% of the time for 78% of people that take it. If it fails, there are other options.
The issue of who to tell and how to tell is tricky. That is why i'd rather just announce it. At first, I felt like I had a secret to keep. That my friends would turn against me, that I'd never date again. I was always optimistic about it, but not so much about how people would react. I quickly realized that for my friends and family it didn't really matter. I will never forget the love and concern shown to me during the trying days of the late april/may months when i was diagnosed. I am heartened by the love around me.
Today, I am optimistic about the course of the disorder and sick of the injections. Life is about the same, besides the price ($100 a month, $3,000 without insurance-thanks insurance) and the injections. Nothing, least of all MS, will stand in the way of my goals or of my life in general. Life is what I make it, and it is beautiful.
I am not afraid, but I am aware.
Thanks for reading.
Best,
Cameron
ps: forgive my spelling and word salad style.
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