When I was first diagnosed with MS, I didn’t take it very seriously. I mean, I intellectually understood I had a serious disease, one that is currently incurable and affects my nervous system. But I spent some quality time in denial land ~ nothing felt very different at the beginning. I was still running (training for Broad Street and with the dream of doing a half marathon), doing intense yoga and handling the daily stress of my job (which is no joke).
A few days ago I was at my doctor’s office again, and as he sat looking troubled at the computer screen, my heart sank a little more. He smiled ruefully, shaking his head a little, and told my husband and I that I’m a troubling case ~ I haven’t followed a typical path of diagnosis and treatment. Nothing seems to work.
Not super uplifting, right? Imagine for a moment, being 34 years old and in the time span of a year, have deteriorated in health so much that walking is difficult (never gonna do that half marathon…), fatigue is debilitating to the point of affecting life on a daily basis, and my right hand just stops working sometimes. Super fun, right? Or more specifically, scary.
I’m starting my fourth drug this month ~ and while I have to think positively, I am also waaaay over all of it. I’ve had welts and bruises all over my body, heart palpitations and mini-strokes (yay?) and a whole bunch of other delightful side effects ~ to no avail. I have still had four incredibly intense flares in a 13-month time span despite the meds. Neat.
I never wanted to become that person who talks about my disease all the time ~ I didn’t want it to interfere with my life at all. Today, I went grocery shopping with an IV line hanging from my pocket because I just didn’t want this latest course of steroids to interfere with my life one.minute.longer. On a positive side-note, the steroids seem to be the only thing that does work, so hurray for that. I said to the hubs a few weeks ago (when the flare began) that I had never wanted steroids more in my life. Which for me, is hilarious. I shy away from any drug of any kind being ingested in my body. I’m just not a fan. The first time I had IV steroids I cried and the man and I thought (very positively) that I wouldn’t need them again. Ever. Hahahahahaha. This was my fifth course.
I guess my only option is facing it all head-on ~ doing the research (ugh), following the trends in treatments and the studies occurring ~ looking at the disease holistically. Diet, exercise (or whatever I can do these days that might pass for exercise), sleep, stress relief, etc etc. It doesn’t seem very fun, or how I might necessarily choose to spend my time. But if it means something that resembles a quality of life again, I’m in.
I have to say that during this whole journey, I have been amazingly surprised by the people who stepped up and spoke to me about things I hadn’t even thought of. People whose support has been an awesome surprise. So, to be just a little obnoxious, I’d like to say thank you to the universe ~ y’know that crazy thing that holds our lives’ paths. For two years of my life I attended a very small, very good high school and the people I went to school with all seemed to have grown up together. But they embraced my brother and I and gave us a place we can still call home. So to all you Wyo folk ~ you really got me through this weekend. I am deeply appreciative and humbled by all your thoughts, messages and help. I cannot adequately express it. I feel blessed.