Managing Your time with Multiple Sclerosis

Ever Since May 1990, when I was diagnosed with MS, I have been an Office Manager, Records Supervisor, Resource Manager, Pharma Contact, and Disability Advocate.

MS will do one of two things, either you become the things I have listed above or you simply follow the instructions of others. When diagnosed I decided I was first going to learn everything I could about the disease. After I felt like I had a handle on the problem, I moved on to how to best manage my situation.

After my inability to work 60 hours a week as required being a U-Haul salaried employee became apparent, I was forced to go on short term U-Haul Disability. Six Months later, I was told to file on Social Security for Long Term Disability. Ok, I did as told. Low and behold, I am accepted after the first filing. I was confused the next month when a check appears in my mailbox. I even called Social Security and asked them why I had the check. Little did I know what accepting the check would mean.

Don't get me wrong, I was thrilled to have been accepted so quickly, thanks to the great record keeping of my Neurologist. Then everything began. First U-Haul said I had been overpaid 1 month and held my benefits until the months paid back them. Thats was the moment I realized that I had to become all the things listed above.

I have to fill out paperwork every year for U-Haul to make sure I still have MS. The Doctors, much to their dismay, have to fill out their portion and mail it to the Disability Section. Now, I have to ask them to make me a copy for my files. If they don't return it in time and or word it correctly, No check at the end of the month.

I have maintained records on Social Security, Medicare, U-Haul, Met Life, Tenncare, and Pharma Companies. When Medicare D was passed, I was thankful, and still am. But, there's always a But. If you take alot of Meds or if 1 is really expensive, You will Hit the imfamous "DONUT HOLE" about mid year. Then you have no coverage for your meds, until You have spent $ 4500 out of your pocket. Well, I never have spent the $ 4500. What I had to do was contact the manufacturers of every medication I take and ask if they had a Patient Assistance Program.

I have found that Pharma Companies are really great. All but one, Eli Lilly, were more than happy to help. Some required a small payment, other, no charge at all. My Doctor even now as advised me that Eli Lilly has came up with a PAP for the Donut Hole as well. I keep detailed records on all my Med contacts, when the program has to be renewed, etc.

What I fear now, If Obamacare should come to pass, can the Pharma Companies afford to heep us ? Will they be penalized, controlled in what they can do ? Will they be fined because it is "unfair" to help us when our Medicare D is tapped out ?

I am sure whatever happens, the Medicare patients are going to suffer more cuts. I know that my record keeping is about to double, from every arm of the Gov't I deal with.

My advice to anyone who reads this. Keep very good records. I don't know what job you performed before you were met with MS or any other Disease, but you now have all the titles above.

Good Luck and Good Day !

Mitch Thurmer