So it’s been quite a while since I had a full-blown degranulation event/attack/onslaught. I’ve been able to keep nearly all of my MCAS symptoms at bay for about three months now (woohoo!) by following the principals Dr. Afrin outlined for us. I’ve almost nearly forgotten what it was like living in such misery on an almost constant basis!
It’s difficult to forget the pain and suffering and feeling like there is no way out or that things were destined to get worse. It’s hard to believe that so many of my symptoms were, indeed, truly symptoms of a disease I didn’t know I had and weren’t just me imagining things. It’s hard to look back and see just how much each and every one of those symptoms affected my daily life from the time I was a little baby.
I can’t describe what a relief it is for me to experience “remission” after suffering for my entire life (and particularly the last several years) with the debilitating effects of mast cell disease. It was hard to imagine things getting better but here I am.
I am living proof that this disease can be treated and can be managed successfully.
Naturally I still get triggered when I am exposed to a trigger (which I still try to avoid like the plague) or when my female cycle stirs things up or when I forget to take a dose of my medicine, but I can function pretty well now despite the symptoms that crop up when that happens. My mast cells seem to be far less reactive than they were.
I have to be vigilant with my medicines and pace myself and not overdo things and I have to constantly remind myself that my mast cells are still fragile and are like little landmines that want to explode at the slightest provocation but I spend less and less of my day thinking about them than I have for the last couple of years so that’s a huge relief.
I spend a lot more of my day just enjoying the new lifestyle that having MCAS has given me, like taking care of my little organic backyard farm…
…and harvesting my cute little indoor herb garden which I use daily since I have to cook and bake everything from scratch now…
…and working on my heirloom teddy bear making and other crafty skills that I can use to hopefully get back to making some money for our household rather than costing us a fortune in doctor visits and medicines…
Of course it hasn’t been easy to get where I am today and my life is nothing like it used to be, but each step has been worth it! I hope by sharing my journey it helps someone else out there to have hope that they, too, can find what works for them.
This is definitely working for me.