I've had MS a long time, but kept it a secret. I didn't want the 'disabled, incurable, progressive, untreatable, etc. label'. I was born with a severe club foot and had been able to shed that "disabled" label after years of surgeries, castings, therapies, corrective and assistive devices. My first dx came after attempted surgery for a ruptured disc, which I didn't have, only the symptoms of. After the dx of MS, I took the steroid treatments, switched docs often, and often denied that I had been dx. When I had relapses and/or new sx, I blamed them on "the foot" or other vague things. About 12+ years ago the disabilities started having more impact on my quality of life, but habit and life circumstances had me making more and more excuses. I was a mom, wife, friend and family member who felt I had to put everyone else first - the ususal. The trigeminal neuralgia forced me into getting dx and under treatment, and to start admitting I did indeed have ms. I was surprised to discover the treatments now available for disease modification as well as huge improvements in sx treating meds. I hate taking the meds, yet know they've helped with relapses and management of my sx. I think I will always struggle with the label, have a hard time accepting that there are activities, events, and functions I can no longer do or be a part of, but remain thankful that my initial ms prognosis was wrong and that I've been able to do as much as I have for as long as I have. I look forward to discoveries that may improve the quality of life of those of us with this disease.
I consider myself to be among the more fortunate of MS sufferers. I feel I still have fairly minimal disability after more that 37 years. I still hate the disease, hate what it's taken from me, my family and friends. MS sucks, big time. But we all agree on that. I'm on Copaxone, which costs way, way too much -- but I'm afraid not to take it and risk becoming more disabled -- and also take Trileptal, Provigil, Welbutrin, Baclofen oral, Ampyra, xanax and use Lidocaine patches as needed. As much as that may sound, I take less than I did 8 years ago and am working on cutting out as much as possible. I take vitamins - especially mega dose vit D, exercise, do yoga and guided imagery. 8/2007 I had what I refer to as my bionic bladder surgery- The Interstim implant which was amazingly helpful. About 4 years ago, I finally gave into using a cane, mostly because I fall a little too often and have had fractures. Often my legs just won't to come with me, drag or I catch my toes and trip. Actually the cane isn't nearly as embarrassing as falling had become. I've refused AFO's, but now hope Ampyra will negate some of that need. I am interested in the Walkaid, but not sure I will be able to afford it. Even tho my gait is impaired, I feel as if most of my "disabilities" are hidden. Like most people with MS I hear: "Oh, but you always look so good" (which sounds like "you can't possibly have anything wrong") Of course the people making those comments, do not know of the pain, overwhelming fatigue, cog fog or see me the many days when I can't do a thing! Until 'you've been there and done that' it's impossible to fully comprehend the impact these issues have on ones life.
Other than that; I'm in my mid 50's, am trying to survive the horrific dissolution my 35+ year marriage, live on my own for the first time ever, trying to carve out a new healthy, happy life for myself. I'm a 4th generation Californian and have always lived in So Cal. I absolutely adore my 2 loving grown children, son Ryan 29, daughter Paige 22. I have a dog - Lizzie who is a Norfolk Terrier and a wonderful companion. I have many fantastic friends and family, most of whom are supportive. I now live in a small, wonderful community where I feel safe and cared for. I love doing many things including: reading, cooking, traveling, learning new things, gardening and being with people. I was a stay at home Mom, community volunteer and traditional wife for most of my adult life who has now found myself single and unable to do what I thought I was going to do when my "nest was empty", such as play golf, travel, and work in my big garden, and enjoy retirement with my former husband. I received my Realtor's license several years ago and attempted to work with friends and family full time, then part time. Unfortunately, my timing in the market along with my increasing MS disabilities hasn't worked out so well for that career. My fatigue, gait issues, impaired cognition and just too many bad ms days have proven to be a barrier to reliable work days and employment not to mention a social life. I'm unemployed, single, worried about health insurance and being able to live a decent quality of life, but am moving forward and enjoying each day. I'd like to figure out a flexible job or way to earn income that will work around my many on and off days. I remain very hopeful that advances in science will continue to improve life for people with MS and believe I may even see the day when a cure is found. I think keeping a positive attitude is paramount to survival and living well.