I keep hearing the words to that John Cougar song, “oh yeah, life goes on, long after the thrill of living is gone..”
I never was a big John Cougar fan, to be honest, but I get what he’s saying. Most of us go through it just with natural aging, I think. The thrill of life dims as we age but when you have a chronic, incurable illness, it seems to dim a little faster, a little sooner. We desperately try not to let it get away from us, but it’s just so hard to keep up hope for the future when you feel like you have a head cold, a stomach flu and rolled around in poison ivy all the time.
And that’s being rather simplistic in describing life with MCAS!
My life is now a never ending roller coaster ride of symptoms, flares, good days, bad days, medicine trials and error, the ebb and flow of hope and despair and everything else that comes with it.
It’s part of life in the mast lane and I accept that.
I don’t accept, though, that my fate is for my disease to get worse and for me to end up disabled by it like so many others. I also refuse to be that person who keeps adding more medicines and raising my doses, desperately trying to corral symptoms while triggering them at the same time, which is exactly where I was at this time last year.
I’m not knocking modern medicine by any means, but I just personally can’t take most of it. The side effects are almost always just too much to bear or they trigger me into flares that I can do without. Since my diagnosis I’ve tried many (a dozen or so) and only found two so far I can tolerate that actually help me immensely.
So I’m being open minded and exploring outside of the box now more than ever. I want to focus on nutrition, exercise, and attitude in the coming weeks and months. I’m using alternative medicines like DIY antihistamine powder (the jury is out on it still). I am having my vitamin and hormone panels run soon and looking at what I can do there, if anything.
I’ve been back to practicing yoga and other anaerobic exercises daily and it’s definitely helping. Our new dog sled is coming in a few days and I’m so excited. I am determined to get and stay fit again so I can go out there and enjoy racing along the foothills of the Yellowstone mountains with our pups before winter ends. Then I plan to spend the summer camping and hiking and back out on the boat with my sweetie again, sunning in the summer sun like I used to be able to do.
I am determined to keep making progress, which I definitely am, and to find happiness in life and something to look forward to, despite this stupid @$%#! illness.
It’s mind over mast cells now, baby.