I am not trying to be judgmental, these are my raw feelings, but recent exposure from actress Selma Blair’s MS diagnosis has me a bit perturbed. Some of my friends and colleagues have shared their thoughts with me praising and admiring Selma’s bravery in coming out sharing her illness and made comments like, “Bless her for sharing her story or saying just WOW on her interview with Robin Givens. Hmmmmm. I’ve been sharing my story for 28+ years, people that I know personally with MS or I was never interviewed or asked about my MS, can we help, what can we do to get you assistance. People and certain family members get annoyed with me because I’m constantly talking about the disease, food diet, advocacy etc. I was told or screamed at that I talk about it too much or we knowwwwwww!!!!! One person told me I have a life, I can’t be helping you a lot, just here and there. Hmmmmmmm, go figure. Wonder if they’ll yell or say that to Selma?
Ok, I get it, she’s bringing awareness to the world about MS a disease that 980,000 people already have it in America. I’m one of them, advocating for myself, fighting the system, being denied so many things, for example – just got my MS meds in 02/08/19, after fighting 7 years to be approved. So many stories I’ve read or been shared are a hell of a lot worse that should and need to be told. Why is this a big deal that she has shared her story? MS Organization just published an article about her. I bet she’s getting good care. Why? She’s a celebrity that has clout and will bring awareness. Hmmm, we have/had Annette Funicello, David (Squiggy – from Laverne & Shirley), Richard Pryor, Terri Garr, and a few others, has things changed? The help, resources, funding, insurance coverages, appeals, still a huge struggle today, nothing has changed. OH WAIT! Marijuana is legal! So now, in my support groups, I belonged to but left on FB, we have videos of people higher than a kite because that’s all they do now is smoke pot and say dumb things. This doesn’t work for me, I work, I have a job, I’m in college, I cannot afford to get high to relieve pain.
I cannot even get a power wheelchair to do my job effectively. People say to me, call the MS Foundation, they can help. You don’t think I’ve tried this? I need an HC Van to transport myself places easily, used one costs $45,000, my meds are $5,000 a month, co-pay is $1450 a month. I found a foundation with my insurance company’s help, not my neurologist, my doctor’s social worker, not any of the MS foundation resources, I did this all on my own with a severe MS exacerbation going on with my body. One person I had a conversation with has 3-4 power wheelchairs that he was able to get, who does this, I just want 1 and has an abundance of MS meds that keeps getting shipped to him, but for me, I was denied for 7 years. After this rant and feeling sorry for myself, I will continue to find helpful resources and will not let my MS kick my butt!!
MS and My Life 