choices
Let me tell you, dealing with MS, a new restaurant finally being officially official (whoppee!) and planning a wedding … it can leave a lady a little exhausted. I’ve had so many moments during this very speedy month of February when I have been bursting with things to type. In fact, I am tacking on to a partially written post right now, because there’s nothing that can quite replace words written at a specific time.
On Monday, I woke up to the awesome news of being selected in the Broad Street lottery to run this year. In a fit of enthusiasm, I signed up on February 4th because I had decided that I wasn’t going to let MS limit me, or change me. I’d always wanted to run Broad Street more than once, and I didn’t want weirdly numb legs to prevent me. Lucy and I have ramped up our jogging this week, and while I am sore, I am also exhilarated. Things have changed in my life ~ there’s no disputing that. But who’s to say that in a lot of ways, those changes haven’t been for the better?
Let’s backtrack a little bit … Here’s where I was at on February fifth ~ feels like yesterday. But as I said, February is feeling pretty speedy this year.
When my doctor handed me a pile of information about various MS drugs, I felt a little bit overwhelmed, as well as completely disinterested in learning anything else. It was a long day, overloaded with information, and settling in for an evening of drug research did not feel like the way I wanted to end it. (No, I ended it with Nutella).
But now, as my follow-up appointment looms in the not-too-distant future, I know I need to buckle down, and get to it.
Interestingly enough, I’ve done more research on alternative ways to heal. I’ve never been a big pharmaceutical kinda gal (I still can’t remember the difference between ibuprofen and acetaminophen and which one should be taken for what). What’s so fascinating is the powerful link between diet modifications, exercise therapy and remissions in MS flares.
From January 21st until February 18th, nifty promotional packages for four different MS drugs sat on my living room coffee table, reminding me that I was on a timeline. It was strange ~ I’d been anticipating the diagnosis. In certain ways it was a relief. Finally, an explanation for all the hoops I’d been hopping through for the past six months. Instead of being full of questions and daunting ‘grayness’ about all the symptoms and strange new physical difficulties, I was full of questions and curiosity about a known quantity.
Once I metaphorically ripped the band-aid off, the research wasn’t bad. It was interesting and comforting to read forums where people were struggling with the same choices I was facing. Not only how to deal with having MS, but more specifically, which drug therapy to use, and why. I’ve had a lot of people in my life weigh in on how they believe I should be living post-diagnosis, and I know that their thoughts come from a place of positivity and concern. But here’s the other truth. Whatever decisions I have made or will make need to be ones I feel one hundred percent about, because my belief in the course of action is, to me, half the battle. The placebo effect, if you will. It’s pretty much exactly what my doctor said when he handed me the different drug options.
Here were my choices (I like to think of choosing as picking the least of a bunch of evils).
Copaxone. For those of you versed in the MS world, this one is a synthetic drug (and not an interferon) treatment, and the positives are that the side effects aren’t as extreme as the interferons. The negative for me was the abundance of instances of really bad injection site reactions. Urgh.
Avonex. This is an interferon treatment (interferons help to suppress the immune system, and since MS is the immune system attacking the body instead of the invader, it’s a good thing). It’s a once-a-week treatment, and shares the same symptoms as the other two interferon treatments ~ flu-like symptoms, possible liver complications & exacerbated feelings of depression. Plus, it’s injected intramuscularly, so it’s a bigger needle. Yuck.
Betaseron. Another interferon treatment (Interferon -1b, versus -1a like Avonex & Rebif). Betaseron is injected three times a week, and has the same side effects as Avonex. Plus side ~ it’s a subcutaneous (under the skin) injection, so they make automatic injectors and the needle is much smaller. But all the bad stuff … still the bad stuff.
Rebif. Basically, Rebif is the same as Avonex, but it’s injected subcutaneously three times a week. Drawback ~ the dosage is nearly three times as high as Avonex. Where would one advance to, if necessary, if one started out with the strongest dose?
I made my choice on Monday ~ despite worries about my insurance coverage. And this week has been a flurry of phone calls from the drug supplier, the drug representative (contracted out by the insurance company to represent the drug), the drug nurse company and the pharmacy. And starting next week, I will officially be on a medicine that I may take for the rest of my life. Bananas.
On a more positive note, the thing I believe in more than the drug is the idea of making smart choices regarding my diet and fitness routine. Luckily, the man is on board and we’ve been systematically making changes in our life since my diagnosis. There is an absurd amount of information, and everyone is more than happy to talk, and offer information that has worked for them, or things they’ve read or heard. The MS community is interesting, and full of incredibly strong, positive and incredible people. Maybe because MS is unique and individual to each person, it allows every person diagnosed to choose their own path to wellness. There’s something empowering about that. Yes, it’s not ‘technically’ curable, but there are a lot of people living with MS who haven’t had flares in years, people who have been able to go off their medication because their health has improved so drastically through healthy and smart living choices. Those things are uplifting, and feed my hope that as time goes on, I will be a smarter, stronger, healthier and more well-informed person than I am today.