Time to get over this irrational fear.

I was diagnosed with MS in October of 2000. In the last 16 years, I have spoken to three people that actually have MS. I was invited to a support group when I was first diagnosed. Those meetings were held 50 miles from where I live, so I did not go. I spent a lot of time on the internet researching this disease. The internet has a lot of communities that I could have joined but I couldn’t. Why? Well, I would read stories and the fear that someday I would be that bad kept me from it. So I have continued my journey alone. Alone is not really true. I have a great family that has really been through ups and downs with more love than I deserve. In 2005 my husband was deployed to Iraq and my children were 7 and 12 years old. My mother’s health had declined to the point where she could no longer live on her own. I moved her into our house and was her primary caregiver. MS does not like stress. A lesion in my neck had gotten bigger and paralyze me from the neck down. After being threatened by social workers to put my kids in foster care, and the military not sending my husband home because other wives in his unit had faked stories to get their husbands home. I was put into a rehab hospital 320 miles from my home and kids. My roommate also had MS. She got my story out of me and went to work. She contacted our congressman’s office and got the ball rolling on getting my husband home. She was discharged a few days later and I never talked to her again. I wonder if she knows she actually got him home. I could not even use the phone to check on my kids. Five weeks later my kids and husband came to see me. I had regained some of my body but I was wheelchair bound. There were so many adjustments to our lives but we made it. My life became PT and OT. Finally, in 2010 a new Doctor, a new drug, and with a lot of work the lesions healed and I got out of the wheelchair. I walk with a cane now, but I walk. No new lesions and no major flares. 2 years ago I met a lady with MS at a friend’s wedding. She was the photographer. We talked about her treatment for a few minutes and that was it. This has become longer than I had intended, but the point here is: I have a great family but they do not really understand what I go through every day. I read a story on this site about saying “I’m fine” when people ask “How are you?”(I do that a lot). I decided that I am tough but it is not weakness to want someone to really understand what I feel. As to my fear, I am ignoring it because I refuse to let MS win! I am also now willing to say I need the support. If my story helps someone along the way then I am grateful. Thanks for listening.

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