My MS Anniversary!

Wow!  I can’t believe it.  On November 10th, it has been 18 years since my MS diagnosis!  Wow.  Just sitting here typing this brings a whole bunch of mixed emotions.  One, I can’t believe 18 years have passed by and it seems like just the other day I was sitting in my neurologists office with anticipation that there is finally a reason to why I feel the way I do.  Looking back, it was a long journey to get to the point where we had an answer to why my body was acting the way it was.  We didn’t realize it then, but I was exhibiting signs of MS back in high school.  I went through a period of time when I was in quite a bit of car accidents, some when I was driving and then some bizarre where I was the passenger.  I went to a private school in West Hartford, CT and had a long commute each day on the highway.  I still am in awe of the trust my parents had in me to allow me to drive back and forth to school each day starting when I got my drivers license at 16 on such a busy highway.  Now that I am a parent, they must of had mixed emotions as well.  Relief that they didn’t have to make that commute each day and fear of watching me make the commute. 

 Back then, my car accidents always involved my right side, by either side swiping another car on the right side or taking off my right side mirror.  Obviously my parents were worried so they took me to see my neurologist for the first time.  Back in the 80’s, doctors didn’t have tools like MRIs to check for lesions on the brain, a sign of MS.  The only way to diagnose MS was to have a spinal tap and since I wasn’t exhibiting any MS symptoms, there was no reason to test for MS.  So after a battery of tests, my doctor concluded that I was either a bad teenage driver or had a neurological disorder that may manifest itself at a later time.  Little did he know back then, it was the latter.  

 The second wave of emotions I have is relief and excitement.  It has been 18 years!!  I’m still walking!  I’m not in a wheelchair full time or walking with a cane or walker!  I’m walking around unassisted and back 18 years ago, I didn’t know what to expect.  The only people I knew that had MS were Annette Funicello (Mickey Mouse club) and Richard Pryor, both not great examples of what this disease can do to a person. It was a very scary time.  I thought, maybe I have a few good years in me but even back then, I was a fighter.  I wanted children and I had always heard that a person with MS feels fantastic during pregnancy so I was looking forward to it!  Boy, was that the right advice!  Being pregnant and nursing made me feel like I didn’t have the disease.  As if it had vanished!  I loved that feeling.  It still had a way of reminding me that it was there, but the every day pain, spasms and stiffness were tolerable.  Maybe it was the excitement of the baby, not sure but what ever it was, it felt great!

 When I was diagnosed, there were only 3 drugs available for treating MS, known as the ABC drugs, Avonex, Betaseron, and Copaxone.  The first drug I tried was Avonex, a once a week shot.  I, of course because nothing seems to come easy for me, had a bad reaction to the medication, I was actually worse on it then I was before I started, meaning I had a lot of flare ups while on the Avonex.  Now, it was around the time of my wedding so I did have a lot of stress too at the time but the doctor wasn’t happy with the results so he took me off of it.  It was a while before I started another form of drug therapy because I was pregnant and or nursing for about 4 years.  After I had both of my children, my doctor started me on Rebif.  It was the new drug from Europe that they were seeing good results.  I was on Rebif for a long time, about 5 years.  I didn’t mind this drug.  The side effects were tolerable.  I would take my Advil, give my self a shot of Rebif, then off to bed.  The nice thing about this drug was it is a shot 3 times a week.  So I would administer the medication on Sunday, Tues and Thursday nights, giving my self the weekend off.  Eventually, my body stopped reacting to Rebif so after that we tried a few other drug therapies.

 I still can’t believe how well I am doing after 18 years!  Wow.  That’s really all I can say.  I’m in awe of myself and this disease.  Yes, I have had bad times and I still have my days but I never thought 18 years ago that I would be feeling this good.  The real turning point, I think for me, was losing over 90 lbs and finding a way to exercise that didn’t put my MS in a tail spin.  I just feel so good about my self and how I look and how my MS has responded to all the changes I have made in my life.  I had an MRI recently, and while I was in that machine for over 2 1/2 hours, I had time to think.  First, I was hoping after losing all this weight that there would be a lot of room in that machine, well no there wasn’t.  Second, I just wanted to hear the doctor say that it was gone, that there were no more lesions and miraculously, it disappeared.  Now, I know the second part was just a dream but I still had some hope.  Well, when I got the results I was very happy.  My MRI didn’t show any new lesions and it was status quo from my last MRI which was over 2 years ago!  That is huge for a person with MS.  There was a time where my doctors were ready to take my off of the Relapsing Remitting form of MS category and put me in the Progressive form of MS category, so this is very exciting!

 Well, here I sit on November 10th writing this after spending my morning watching my husband teach one of his cooking classes at Williams Sonoma where I stood the whole time!  Yep.  I stood for over an 1 hour!  Actually it was more like 1 1/2 hours that I stood!  I never would have imagined that I can do that 18 years ago.  After the class, I came home full of energy, made a pot of chicken and rice soup (GF by the way), washed over 3 loads of laundry, folded and put away and typed my blog.  That is a full day for me and it feels great!  18 years ago if you had asked me where I thought I would be with this disease, I would have said either using a cane or a walker or wheelchair bound because that was the mentality 18 years ago.  Well, guess what, that’s not the mentality anymore, at least not for me!  Bring it on I say, let’s see how I am in another 18 years!