realizations

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.