The longer I live with the MonSter on my back, the more I am shocked, surprised, even slapped in the face to learn that everyone's case of MS is soooo different. No wonder scientists have been unable to find a cure and have trouble coming up with treatments! The darn thing looks completely different on everyone!
Plenty of us show no outward appearance of the disease, while others have quite a hard time hiding their symptoms. Some people are diagnosed and then go years before having another relapse...some MSers never have another relapse. They take their injections, and go about their life with symptoms, but no relapses, no new lesions or inflammation, no disease-progression. It is pretty awesome that drugs exist (known as Disease-Modifying-Drugs, or DMDs) that help so many people to live life as normally as possible. And it is wonderful that these drugs work and these people can go years without the stress, pain, hassle and fears that come with a new relapse. I know many of these people – doing well, clean MRIs, "stable" and I am really happy for them.
I also totally hate their guts.
Okay, hate is a strong word (thanks, Mom, for hammering that into my brain as a child). I don't hate them. I just sometimes want to punch them in the face. No! That’s not right either. It’s jealousy. Plain and simple jealousy. I want to BE these people. I want the drug that works. The one that I shoot into my leg or arm every day and the one that keeps the MonSter quiet for longer than three months at a time.
So in October, two months into my Relapse from Hell, Greg and I had become best friends, completely inseparable and I had lost 80-90% function of my left hand, not to mention 100% feeling in it, with numbness and pain elsewhere too. I was a mess. Well, it turned out my brain looked even messier than I did and my October MRI was so full of lesions and inflammation it looked like a damn LiteBrite on the films. This worried my neurologist so much he called me at home right after he read my MRI. He also told me to start considering going onto a new drug called Tysabri.
Tysabri has a love/hate relationship in the MS world. People love it because it works for a lot of people - it gives them function back. It takes pain away. It is only given once a month via IV infusion. No shots Every Day! People hate it because it comes with some risk factors. Okay, actually it’s just one major, MAJOR risk of developing a crazy rare brain infection called PML (the acronym for Progressive + 2 other words that require a medical degree just to pronounce!!). PML has been known to cause severe disability, even death. I did plenty of research on Tysabri and PML, as did my team of doctors, and the risk for developing PML is less than .05%. Plus no one has ever contracted PML in their first year on Tysabri, so first 12 months are like a free pass.
This week just finished infusion #5, so I am four months into my 12-month grace period. Greg and I "broke up" shortly before Xmas. (My family then all tells me they "never really liked him anyway!" hahaha) AND...I am typing this to you with BOTH hands. Slowly, I am playing piano again (though I had to get out my easier piano books and "reteach" Lefty how to play. It’s amazing how the brain works and that you can reconnect neural pathways that weren’t talking to one another! And my MRI done in January showed that all the inflammation I had in October was gone and I had no new activity or lesions. My brain is no longer swollen!!! Yippee!
So obviously Tysabri is working. And I am SO incredibly grateful.
I am optimistic and hopeful for the first time in a long time.
So why then is there this little voice in my head saying, "Oh puh-lease. This won't last. You won't feel good for very long. It's only a matter of time. I mean, hul-lo?? Your MS track record ain't so good, babe. Keep dreamin’ that this drug (your third in less than three years) is actually going to work. "
I hear this annoying voice and I realize that part of me is waiting for the other shoe to drop. I am not just optimistic. I am trepidatiously optimistic. (I realize that may not be a word, but I like it, so I’m keeping it).
And I find I am rather annoyed at myself for feeling this way.
Then I remember that I sort of have a right to feel this way, to some degree. I mean, in my first two years with MS, I relapsed SIX times. Which is more than three times the average for most folks with MS. I always knew I was special! Ha.
Seriously, though, relapsing has become a way of life for me:
I relapse. I let my family know. Our Moms bring food and make sure our fridge is stocked. I email our friends and by the time I am hooked up to IV steroids, Tiffany has already baked a batch of her famous ginger-molasses cookies and delivered them (or sent Steven over with them) because they knew that is the only thing we have ever found that gets rid of the awful metallic taste I get in my mouth from 3 days of Solu-Medrol. Chris works from home more to help take care of me. Angela drives me to the classes I feel up to going to. Alice, my mom and my aunt Eileen drive me to my doctor’s appointments. People come help me fold laundry or type my papers for school. When we go out in public, my friends offer me arms and hands to hold onto because they know I am unsteady. After almost three years, all of this has become almost second nature.
But in the past two months I have slowly started to feel like a real, whole person again. If you count August as my official last relapse-start-date, then this, right now, is the longest I have ever gone without a relapse. < knock wood > And so of course I am looking around for that "other shoe." It might be any day now...next week! Or it will probably be over my spring break since Chris and I are planning to go out of town. Or it will come during finals week. Any second now....BOOM! I won't be able to walk or Lefty will give out again and I'll be back to needing help tying my shoes or...or...
I could go on forever worrying about what might go wrong, where in my body it might go wrong, how much it is going to hurt and when it is going to happen. But it is completely unhelpful because Right Now I am not relapsing and my MRI was clean and my left hand is working and I don’t need my cane anymore. The pain is manageable and I don’t feel as overall terrible as I did from August through December.
Sometimes it just feels like a bad dream that I had. And I have woken up and I feel okay, and I can type again and play Oscar when I want to, and I am a Senior in my final semester about to finish my undergraduate degree! And I love my house and I am married to a wonderful man and I have the best family and friends of anyone in the whole world and Right Now I am going to appreciate my body and all the things it can do for me Today.
As much as I would LOVE to know what will happen tomorrow (and then plan accordingly for it, of course!), I just can't. No one can. I am wasting precious energy (aka Spoons) worrying about the Ifs and Whats and Whens and Hows. I am going to try as hard as I possibly can to just enjoy Today, to be present in whatever I am doing, to try not to worry so much and to hold on for dear life to my Optimism.
Meanwhile, I am going to tell the Trepidation to find somebody else's shoes to mess with. Both of MY red shoes will be staying tightly on my feet, thank you very much.
