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Showing posts from June, 2018

Preaching on a Tuesday

Three days ago I  had a very brief window of time in which I realized that I was walking regularly. One foot in front of the other, knees bending appropriately, balance spot on.    I didn't know how long it had been happening but the realization came over me, I froze. Not for long, though. I needed to keep moving, keep walking. so, I did. From one room to the next and back again, tears flowing the entire time. For the first time in nearly seventeen years my body was behaving as it should. I was exhilarated. Upon calming down a bit, I immediately began analyzing everything I had done that day in hopes that I might be able to recreate this miracle. Next morning I mimicked the previous day's activities. I was still walking better than I normally do, but it wasn't anything like the day before. This morning I am back to my stumbling, unbalanced, drunken demeanor that has nothing to do with the red wine in my fridge. MS is definitely a mystery. An unfair, vicious, mea


            THANK YOU IN ADVANCE Today is the DAY. In approximately four hours I will undergo the official physical in my application for disability. Even though I realize I have a right to this service, my pride just keeps throwing spit wads at me. I see people who look to be in worse shape than I. I read stories and hear on the news accounts of horrible tragedy and hardship. I pray that cures will found for MS, cancer, heart disease, ALS, depression... And then I turn slightly to my right and...fall...on my face...for no apparent reason... After cleaning up the mess I made when my fall knocked over the water glass on the coffee table resulting, in a ruined newspaper and a mound of soggy knitting yarn, I head to the bathroom to tend to the rug burn that scorches up the entire side of my leg and then put  Neosporan and a band aid on the gash on my forehead...all while fighting the tears...of self pity and humiliation...remembering that my gas tank and wallet are on E  and my ap

MS and children

FDA Approves First Treatment for Pediatric MS On May 11, 2018, Novartis announced that Gilenya® (fingolimod) was approved by the United States Food and Drug Administration (FDA) for the treatment of children and adolescents, ages 10 through 17, with relapsing multiple sclerosis (MS). This is the first disease-modifying therapy (DMT) to be approved for this form of the disease in this age group. Known as “pediatric MS,” nearly all of those diagnosed have the relapsing form of the disease. Children also experience approximately two-to-three times as many relapses as an individual with adult-onset MS. A clinical trial comparing Gilenya to Avonex® (interferon beta-1a) in children and adolescents found that those treated with Gilenya saw an 82-percent reduction in their annualized relapse rate over a period of up to two years. Please see MSAA's online news article,  "FDA Approves Gilenya® for Pediatric MS," for more information. If links are disabled in this email, pl

MS and Social Security

I am excited yet concerned at the speed at which my application process for disability is moving along. Not enough good can be said about the dedication shown by the individuals who are working my case: Professional to the core and seemingly sincere. I just hope that I am not being set up for disappointment. Never having been one to move forward with pal extended, I initially  fought the idea of disability funding. then I was and am constantly reminded that I have personally added to the funding of this project for over thirty-three years. So I suppose I am just asking to be reimbursed? Well, whatever... This process has heightened my awareness of the funding required to own an illness. Living with Multiple Sclerosis, or any chronic illness is expensive. In a discussion with my brother over the weekend, I realized just how much the MonSter owns me. Insurance isn't getting it done, especially with treatment additions that are not recognized as medical necessities. If I was