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Thursday, September 17, 2009

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


Anonymous said...

Hi Mitch:

Even though I was dx'd in 1976, I didn't start on SSDI until 2007. I was able to work at SOMETHING until 2007. I had some kind of medical at each place of employment. When my medical was worse than hubby's benefits, I was covered at his work.

In 2007, the shit hit the fan when I got on SSDI with Medicare Part D. While the monthly check was welcomed along with some other perks, the donut hole was not welcomed. My husband's NEW company only covers $1200 RX per year, while Med D covers the first $2700, then the donut hole.

If I played my cards (meds) right, I could use the $2700 up by August, then my husband's $1200 to get to end of October. Then I was up a creek until January, because I had to pay cash. The first year I totally messed up by using up the $1200 first, then the $2700, and still ended up paying out by Sept.

I decided there had to be a better way to skin this cat.

I started looking into Canada drugs and other countries. While I do not take any DMD's (by my own choice), many of my meds are very expensive besides.

Now we have to pay extra $$$ for me to be covered on hubby's plan and it doesn't work to our benefit. So this year, I used the $2700 Med D, to donut hole, and supplement my warren of meds with getting them from overseas.

I use which is located in India but has a California phone number. Feel free to check them out at your leisure. They charge $25.00 for shipping, so I get a few people together to put in an order every two months or so. Everything is blister packed and goes through Customs, so it is resealed when it gets to you and can take as long as 6 weeks to get it. But to me, it is worth it.

What costs me $1050 a month here in the US, costs me $210 from India. They do not supply narcotics, but I don't take any anyway. The drugs I need for Crohn's, RA, GERDS, neuropathy, bladder problems, restless legs, allergies, all cost way less than here in the USA.

I have been using this website since October last year and am very happy with them. They take Visa or bank check, even trusted me to send them a check after they sent the meds! Very good prices.

So do check them out.

Mitch Thurmer said...

Thanks Anne, You have got it under control. I am happy with Betaseron, they have really helped me. I fear they might go thru some crap and be MADE to quit the PAP.

ALso, I am wild about Lyrica, It stopped my Neuro pain, witch was really bad.
Have a great weekend, From your Brother in arms, Mitch

Mitch Thurmer said...

Anne, also, how you go about getting more people to read a blog ?
I am in the dark on this..


Anonymous said...

Put a counter on your blog to see how many come to visit per day (and a location widgit to see where they come from. You can get both by clicking on my counter and my location widgit and follow the prompts.

Increasing your numbers usually is a matter of self promotion. Leave comments on other blogs and sign your name, under your name list your blog address.

You can use my sidebar blog roll to start and as you visit others, you will pick up more MS blogs. You can list yourself with FEEDBURNER or GOOGLE READER and everytime you post new, it will be listed there for others to scroll through blogs that interest them.

To get other to actually READ what you write is another matter. I guess we just have to be genuine and real, on a topic of interest (which helps! LOL) and not be preachy (which is hard sometimes).

You may want to get listed with BRASS AND IVORY - Lisa Emrich runs a Carnival of Bloggers which showcases MS bloggers every two weeks. You can reach her at:

Pick out one of your posts which you are especially proud of and offer it to her for her next publication. It's free and promotes your blog. Read up on what she publishes here:

You can visit her MS blog at:

She also writes a column on MS Central. You may even run across some of my answering of posts there. :-)

Good Luck,

Anonymous said...

Here's the link for one of my Carnival posts.