I spent the days after learning about my diagnosis just absorbing the news, trying to get educated about this disease, and not feeling very well. It turns out a spinal tap will give you a beatdown no matter how good your attitude is, and I was also taking some drugs that had more side effects than I had anticipated.
Fortunately, I was myself again by Christmas, and spent the holiday dedicating myself to traditional family activities such as eating and drinking more than necessary.
This week, Matt and I move from being people of reflection to people of action. It may be true that my version of MS doesn’t have proven treatments, but that doesn’t mean that I don’t want to know everything I can about what’s happening and to do everything I can to prepare myself emotionally, mentally, and physically for any future developments. (And by future, I mean either next summer or in ten or twenty years.)
Taking stock of where we are at this moment, here are a few things that have gone well so far:
Love. As I noted previously, my family and friends are pillars of strength and support. Matt has not once blinked or flinched at any of the tough news that we’ve been given. My mom and dad are braving the Vermont winter next week to administer love and hugs in person. And my friends — god bless them — have graciously allowed me to talk about this issue as much or as little as I want to. It varies. Some have even moved into the realm of laughing at the occasional brain-related joke. And as far as I’m concerned, the more laughing, the better.
Care. My local doctor, who had the sense to refer me to a neurologist to begin with, is great. I’ve rarely been sick or injured before, so I don’t really have much of an existing relationship with him. But lately I’ve needed more help. He’s called me back right away, every time. He leaves his actual phone number instead of sending me through his nurses for a return call. He speaks to me like a human being and is professional but also sympathetic. After each conversation, I feel better. I don’t think his practice is accepting new patients right now, but to give credit where’s its due: thank you, Dr. Scott Smith in Middlebury.
Health. I feel fine! I need to get my body moving, but that’s nothing new for me at this time of year.
What’s gone less well so far:
My neurologist (who will go unnamed here — because there’s no need to be publically rude to someone who may or may not be making brain-related decisions on my behalf) is tough to pin down. When he told me that I have MS, it was about a five minute conversation just prior to the lumbar puncture. I was stunned and distracted, and I didn’t gather my wits in time to ask good questions. And the next appointment I’ve been able to get to talk to someone (an MS specialist) is at the end of February!
I feel like a two month wait for additional information would have justified a greater investment of time by the neurologist at the outset. Perhaps even a follow up appointment. Or just a phone call. Instead, I’m having a hard time getting in touch with him and I have a general feeling that my family and I are on our own in determining how to address the disease. At least until the end of February. And although I know I’m not in an “emergent situation,” this seems like a long time to wait. Frustrating.
And what’s coming next.
This week, I’m exploring some options. While central Vermont isn’t necessarily a center of cutting-edge medical research and care, there are several MS centers in New England that seem to offer a good holistic approach to treating the disease and its symptoms. It’s hard to get started with them, but I’m hoping to get an appointment before the snow melts. Fingers crossed. (Friends who’ve sent names and contacts: thank you! I will be following up.)
I usually spend this time of year also gearing up to get healthy and clean up my act, and this year that initiative seems to have much more meaning. My traditional Dry January seems like a ridiculous idea this year (I have a disease, and I want a cocktail), but I definitely have a sense that eating better, adding exercise and adding yoga will help me feel great both physically and mentally. There’s a giant snow storm outside right now, so today’s probably not the day. But the day is soon.
Right after I got the MS news, my friend David sent me this text: “Positive fucking attitude.” Nephew Will, if you’re reading this: that is completely inappropriate language. Don’t use it. Everyone else reading this: that is perhaps the most appropriate language I’ve heard yet to address this situation. They’re words to live by, so let’s get started.
God, I wish I had anything to offer! I consider myself a problem-solver type (often to a fault!), so it’s frustrating to have no semblance of a solution or even anything helpful to say. All I can think to say is I’m with you in spirit and thinking of you often. Good luck with this next round of doctors and exploring of options. I know it’ll become a new full time job (as if you need another, I’m sure!).
Aspen, it feels weird to me to be unable to really do more, too! I appreciate your support, though. It means more than you know!
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