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I live in a little house in southern central North Carolina. I once lived and worked in the area training, grooming and riding horses for the racetrack, fox hunting and equine eventing. I worked for a large animal veterinarian, a landscape company and a horse-breeding farm.
I used to be very physically active!
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In 1998 I was told I had multiple sclerosis. Big deal I thought, I've got things to do. That was the year of my first "big" exacerbation, but with some accommodations I kept working 14-hour days (I napped for an hour at noon). I figured the symptoms I was having (vertigo, loss of balance, numbness in legs and arms, loss of sight, etc) would go away, and after several months they did subside – somewhat. The residual symptoms I learned to live with.
Everyone around me seemed more concerned with my diagnosis than I was – I just couldn't imagine not being able to do the things I loved.
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I believe at the time of my diagnosis it should have been Secondary Progressive (SPMS) but the doctors had me shoot up with Betaserion for the next 3 years, even though my physical abilities were in slow decline. In 2001 I went to get a glass of water in the kitchen (I was a tad wobbly then), I reached for the tap handle and fell to the floor. Now the neurologist applied the label Secondary Progressive MS (ya, whatever) to prescribe Novantrone and Copaxone. It was almost a year before I could walk more than a few steps.
So I got a dog. Charlie.
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I made it out of the wheel chair but still wasn't steady on my feet. I used walls when I was in the house and only shopped in stores where I could park next to a shopping cart. I had applied and been granted SSDI, but I figured I wouldn't need it very long.
Charlie ended up being too rambunctious for me to walk safely so instead of training him, or anything intelligent like that, I had a fence put up in the back yard and got Lucy.
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For the next five years I waited to get better. I watched a lot of TV. Every morning I was kinda surprised that I still had trouble walking – and eventually: reading, standing, holding my pee . . .
Feeling like my neurologist wrote me off, I went on the Internet to see if I could find out what other MS'rs were doing to fight this disease ~ this is how I stumbled upon MSWorld.org, where I eventually met and became part of Our Heart Greeting.
What a great site! (msworld.org) I spent a month reading "Life on Cripple Creek”, overjoyed to find someone else who seemed to mirror my sense of humor and disability experiences. That lead me to the message boards where I finally joined, thrilled to make connections with other people in the same leaky ship as me.
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One of the people I connected with on the msworld message boards was cimmonz, a very positive and funny poster. Sure, I admit there are posters I avoid reading (too negative) but I could always count on cimmonz’ posts to be uplifting and/or hysterical (and often informative).
Then in the summer of 2007, she and I were fortunate to be taking simultaneous vacations at the same lake in New Hampshire ~ So of course we "did lunch". She is every bit as amazing in person as she is on the message boards!
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When she approached me about being part of a movement called Our Heart Greeting I leapt on board. What a fantastic idea! I want to make a difference in the lives of people with MS ~ especially I could envision making a huge difference to those newly diagnosed, who maybe like I was, are feeling lost and unattached.
Even now, years into some form of acceptance living with the MyStery, cimmonz has cheered me out of a funk and proved to me what OHG can do to enable someone who is [dis]able.
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I look forward to helping others the same way ~
it's superfabwonderous what we can do!
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