My Long Ms Journey

I consider myself to be one of the "luckier" MS ones. For the most part my MS has been what they used to call benign MS. For me that meant I got away with hiding my MS and being the Queen of Denial. Looking back I, along with my friends and family, can remember all sorts of little 'strange' things that we can now explain with my MS dx. In my very early 20's, it was pretty awful. One time I had a progressively worse time with my right leg, with pain, numbness, and eventually paralysis. Since I was born with a severe club foot (corrected during infancy & early childhood), I sought help from orthopedists who of course thought I had a disc problem. I went to a neurologist (this was 1976) who immediately scheduled me for surgery. Of course, no disc problem they decided I had scoliosis (I don't) , they just gave me lots of steroids and the problem went away (duh). I was left with a foot drop and a limp, but I blamed my "bad foot" and got away with it for about the next 25 years! Next I was working for an ophthalmologist after hours when my eye that had been hurting, lost almost all vision. When she looked into my eye and heard my description, she freaked out, dragged me across the street to another ophthalmologist to verify her dx of optic neuritis. They explained it was often a first symptom of MS. More steroids and it went away, but left scars for MDs/ODs all to see when looking into my eyes. Next time I had ON in the other eye was when we brought our adopted daughter home from the hospital 8/19/89. I received a big lecture then as that MD saw the scars on the other eye and I confessed this was my second bout of ON. More steroids, didn't tell anyone, didn't go any farther with finding out if I indeed had MS. By then I knew I did; I pins and needles in my feet, numb areas on my back and legs, and all kinds of things. But hey -- no MRI's, no CRABS were available then. I think they were even still doing the hot bath diagnosing! Fast forward to 2000, and my dear close friend who was soon to lose her fight to cancer, after being honest about my issues, I discovered her uncle was the head of the MS clinic at the University near me. I made a promise to her to see her uncle and get dx, which after avoiding it a while longer and having it flare up into trigeminial neuralgia (big ouch) I finally did. What a God Send. I've been so lucky to have had the best treatment and seemly be in the right place at the right time. I do wish I would have been a little more diligent and been dx sooner, but we can't change the past. But I'm doing everything I can now to fight back and take care of myself now. In some ways denial served me well, but that time is over - way over. It's very hard to face up to the fact that you have a chronic disease AND some disability. But I've also found it a giant relief to put a name to why I'm so tired so often; why I can't play golf, ski, hike and do a lot of the things I used to do, why I'm such a huge wimp about the heat, and so on. I use every opportunity I can to explain not only about myself, but to educate others about the disease. For me it's all about adjusting, adapting, modifying and fighting. If I want something bad enough, I'm going to figure out a way to get it. I've always been that way -- my parents raised me to be that way. The club foot I was born with wasn't supposed to be "fixable" in it's time, but a wonderful surgeon came to my young parents and asked if he could try, after others had told them I wouldn't walk. I went on to not only walk, but skate, dance ,snow ski, water ski, do about just about anything you can think of -- maybe not always very pretty or well, but I had/have fun! Same with MS, it's not robbing me of much either; I gave into the cane just so I can do and go where I want without falling. If I really, really wanted I'd play golf again too. I'm living my life the way I want, the way I have to for now. Be brave, but dream it and then make it happen.