When Medicine is a Crapshoot

I was diagnosed with multiple sclerosis in September 2004, my daughter GJ was six months old.  Since then I have been on three "official" multiple sclerosis medications:

*Avonex, which was a weekly intramuscular shot with a ridiculously long needle. I gave myself that shot for seven years.

*Tecfidera, a twice daily oral pill.  In 2011 I started limping and noticing extreme leg weakness. My neurologist suggested that I try this new oral medication.  I was thrilled to stop giving myself shots, but the oral pills came with their own intense side effects.  While I was on Tecfidera, I slowly progressed in my decline in mobility.

*Lemtrada, a medicine given  through IV.  The first year is a five-day course of IV drugs, 8 am to 5 pm at the neurologist's office. I did my first round last year in early December. Next week I will begin my second round  of this medication, this year it is a three-day course. The goal of this drug is simple...  Stop disease progression.  The medicine wipes out the majority of my immune system. The thought is that as the immune system builds itself back up it will behave better, quit attacking itself.  

Stop. Getting. Worse.  I was, and sometimes still am, worried that I will be bed bound.

I did not journal or blog  last year when I started this medication. I wish I would have. I know that I was not walking well. I had my power chair at home, I got that last October,  and I was using my scooter out in public.  I was still able to transfer out of my scooter on my own, but it was very difficult. I know that my right hand was bad  and writing and typing on the computer had become impossible.  (I'm a lefty now.  Sloppy eating and even sloppier handwriting.)  I know that last year I didn't even go in for my second day of treatment because I had fallen in the night due to extreme weakness.

How do I know if it's working?  I feel like I'm worse than I was a year ago. I'm not transferring on my own at all anymore.  I need help in every aspect of my life, I just can't move on my own.  The fatigue can be crippling.

There are days when I think  that surely this is the worst it is going to get.  One year from now  I hope to be at least the same if not a little bit better than I am right now.

But on other days I wonder, what if this is good compared to where I will be in one year?

One day at a time.  I have to repeat that over and over to myself. I can handle today.

Sometimes my mind wanders and I get scared about the fact  that I literally can't live alone.  The list of things that I did independently for 40 years can go on and on and on.  I, who love to be alone and can get lost in my thoughts  for days on end, now have a caregiver with me 90% of the day.  I am simultaneously thankful and resentful of the help that I constantly get, yet consistently don't want.

Then I remind myself:  today. I can handle today.