Annette Funicello

Many years ago, I watched a Lifetime network type show about Annette Funicello and how she had multiple sclerosis. I clearly remember thinking, "One day I'm going to have that disease." Yes, you might think I'm crazy. But, Lord knows my parents remember me bugging them at the time about it. 

I don't exactly believe it was precognition or anything mystical. Maybe just for that moment I had a glimpse at my strange DNA or whatever the catalyst for MS is that was floating around in my body. But, I remember that moment. All of these years later, I was diagnosed and the day I was told it was MS I thought, "Of course I was right." I am right a lot.

Clinically, I have a lot of damage. Physically, I deal with it very well. I think that is what happens when you have kids. And, kids with special needs. I don't ever really feel like I have a choice. I hate my medication. I make no secret of that! It sucks and it steals my time with its side effects. Of course, it gives me time, too. 

What is hard to explain is that I have been on every medication approved for MS. They don't work. That also sheds light on the course of MS that I have. The one medication worked, but I'm allergic. allergic allergic allergic There is one oral medication that I cannot take due to heart issues. So, I've been on every approved medication and off-label available. And, then - IVig. 

So, BG 12 (now named Tecfidera). The oral medication with no side effects (more or less, they say) that I have been waiting to take for a long time. Over a year. It was released last Wednesday. Yippeeeeeeeeeeeee I got an email from my neurologist's medical assistant to come in and she even called to make the appointment so we could "talk about" Tecfidera.

Sometimes, I wonder about myself. I just took it to mean that I was starting the medication. I am so darned special that my neuro called me in to get going right away. I am special. 

I got up, got dressed, actually grabbed my kindle to snap a photo of myself signing the paper to get started (it is that easy!!!), and ran to my appointment. I should have known better. But, I didn't. The NP saw me first and told me that they had reviewed my records thoroughly and were not going to start me on the new med. I've always had a progressive pattern of MS, so it is what it is. I am ambulatory on IVig and the risk of stopping does not outweigh the benefit of not having to suffer through this shitty medication. 

So, I left. I stopped and told my my mom. She knew I had been waiting for this a long time. 

I'm not going to say I'm not upset. It is just the way medication is, though. Imperfect. I feel sort of confused with my feelings because I had put way too much hope into this medication, and now it is just gone. In every way these last years have been one disappointment after another when it comes to treating MS.

The only thing I know is that it is sad that Annette Funicello died. MS is not a fatal disease, especially with disease modifying drugs. But, for me - yesterday was sad. I have little hope of a new drug coming out anytime soon. And, I could really relate to Annette Funicello and she passed. Godspeed, Annette the Mouseketeer.