Skip to main content

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.


Post a Comment

Popular posts from this blog

A Sea of Orange Hope

With a forecast for rain and cool temperatures, many felt the 2018 Walk for MS might be a sloppy mess; but when I arrives in Morgantown, West Virginia, I found an optimistic, celebratory atmosphere that no storm could dampen. Clouds dispersed and skies cleared, knowing that the heavens  could not compete with the storm happening on the ground at the  Waterfront.

The true champions had arrived and their name was Warrior.

Tents were erected, tables arranged, team shirt distributed, books stacked, (I got to share I Have MS. What's Your super Power? !!!!)

acknowledgements made, participants in place, and the walk began,

with Team Tiffany in the lead. My new MS friend, Tiffany Albright, is an inspiration. she single-handedly recruited an amazing team of walkers that outnumbered any other congregation in attendance. Her numbers were amazing in monetary contributions and the enthusiasm of her teammates was more than inspiring. 

Event though I did not personally join the walkers, my day was fu…

MS and Exercise

I don't know about you, but sometimes (most of the time) the motivation to exercise is just not there. And that is just plain crazy.

I am more than aware of the positive effects of daily exercise. I always feels better, both physically and mentally, after taking time to stretch, bend, and force my body to meet the challenge of movement. My biggest issue is the accountability. Exercising alone means no one can attest to your commitment. Unfortunately group gym, spa, or class situations are not financially nor logically an option for many of us.

And sometimes, like this morning, it is even an effort to fire up the DVD player in order to access one of my many yoga videos. Even though that cute little blond instructor coos encouraging words my way, her interest in me is purely superficial. We know nothing about one another. 

According to the following chart shows the seven best exercises for living with MS. They are easy, doable and require no equipment or additional cost.…

Aubagio Followup


Last evening I attended an area meeting to learn more about Aubagio, one of the three oral MS medications on the market. General MS physician Mark Hospodar provided the informational portion of the session, complete with a slide presentation full of facts about multiple sclerosis. It was very basic and mostly repetitive for those pro-active MS sponges. Not mind-blowing stuff, but pretty heavy on the importance of medicating upon diagnosis.
Enough to convince me to take a closer look at my own choice to remain MS drug free.

It was an intimate group of approximately a dozen women plus the doctor. Very relaxed, informal, and free of judgement. We were all there for the same reason with the same goal in mind: to discover the "wonder" drug, or at least something closer to a promised remedy. (In addition to the fantastic Italian cuisine at Muriale's Restaurant. Yum!:)

We heard from Aubagio veteran, Renee, who told her journey with her initial diagnosis s well as her life with …