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Friday, May 6, 2016

I have MS. I am a guinea pig.

8:14 has come and gone and I continue to stare at the clock.
8:14 has been an important twelve hour landmark for two months.

Ampyra time.
But there is o Ampyra to be found.

The prescription ran its course and my insurance doesn't recognize the importance of this little pharmaceutical.
I am told that I make too much money to qualify for financial assistance, although the balance of  my retirement  check would be a mere $200.00 after settling the Ampyra bill. Unfortunately my house payment is twice that and there is the matter of feeding the family.

I would consider easing my pain with retail therapy, but I gave the last of my loose change to my son for the school snack bar as a Friday treat.

It is amazing how important something as small as numbers on a clock becomes in one's daily schedule. With nothing of import to fulfill at 8:14, I am at a loss. I even tried taking my daily vitamin at 8:14, but it just lacked the thrill of medical experimentation that Ampyra offered.

Medical experimentation?

Yes, I have MS. I am a guinea pig.

In this situation, the drug in question was  working. My walking gait became stronger with Ampyra. I could keep up at exercise class and I began enjoying again an evening walk around the neighborhood. I had planned to get back in the water for a little water aerobics, but now I am very leery of putting myself in a potentially stressful situation. 

I know my complaints are trivial and unfounded in the BIG picture. I am just disappointed. Very disappointed. After fifteen years, I began to see a little light behind the MonSter; now to be dashed by BIG PHARM.

Dashed, yes.
Extinguished, no.

Two can play this game.

Not only do I have MS, but I am a writer. A writer with a BIG PEN, here to re-prove the pen is more powerful than the sword.

Bring it on. I'll be waiting here beside my clock.

Have a good weekend. It's rainy here in West Virginia.


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