I’ve been blogging regularly since my MCAS diagnosis and I’m happy to share both the highs and lows of my journey in the hopes that it helps make the road a bit smoother for someone else out there.
I’m doing much, much better these days. In fact, I’m feeling better than I have, well, in a very, very long time.
From the time I was born I was always sick but I was extremely ill by the time I first heard my immunologist say those fateful words, “have you ever been tested for mast cell disease?“. I didn’t think I could get any worse than I was when I saw him that day but I did get worse, for awhile at first, but then I began treatment and got better.
Then, over time, I got worse again and had to make some major adjustments to fix that. Now I’m not just back, but like I said, I feel better than I have in a very long time. Maybe ever. Part of it may be the cooler temperatures and the lower pollen count, but I think most of it has to do with the adjustments I’ve made. I saw immediate results by changing a few things, like getting off of my trigger-filled medications.
The interesting part is I am taking far fewer medicines than ever. It’s been a month now and I’m still just on oral and nasal cromolyn sodium (and a lot less of it than before) as well as vitamin and mineral supplements which I feel have helped me tremendously. My diet is still very limited (but very healthy) and I’m still practicing pretty strict trigger avoidance to achieve the level of wellness I’m experiencing but my “safe zone” has expanded quite a bit and I can now finally leave my house without fear.
I am still a bit sneezy at times, which is alleviated by an extra squirt of Nasalcrom, but I can now tolerate things like traveling in the car long distances, going out for long walks without having a mucus attack or wanting to faint. I’ve even been out shopping and to a restaurant with friends and family this weekend without being triggered (I did avoid the perfume counter and stuck to things on the menu that I know are “safe” for me like bacon and fruit).
I went to the dentist a few days ago and (finally!) had my teeth cleaned without being triggered during or afterward.
My joints, tendons and hip don’t hurt and my gut isn’t inflamed hardly at all anymore. In fact, my digestion is perfect as long as I am on the cromolyn sodium which I take religiously. The stabbing pains, electrical shocks/tingling and pins and needles have disappeared. I still get lightheaded if I’m around heat and humidity for long so I make adjustments for that but I haven’t had full fainting spells or seizures in a long time now, which means I may someday get my driving privileges back (yay!).
My menstrual cycle is regular and pain free after decades of torture (hallelujah!) although my own estrogen still triggers me a bit (but not nearly as bad). I’m also not getting massive swelling, itching, burning skin, hives or dermatographia much at all lately, outside of my cycle, all of which used to be pretty awful all month long:
My granuloma annulare rash, which looked like this for a long time (and was forming new rings right up until I stopped taking the medicines with my triggers in them) has completely disappeared, too:
It’s as if I never had it to begin with and seeing it disappear completely is like a miracle, really.
My brain fog has cleared, I have a lot of energy and I’m able to do things like get up quickly or hold my hands above my head for long periods without feeling weak, shaky or triggering the POTS symptoms. I am even back to doing yoga, which I love (hooray!).
The future is looking pretty good right now, to be honest, and like I said, it might be the weather and lower pollen count but I feel like a lot of it is because I read and took to heart Dr. Afrin’s advice in his book, Never Bet Against Occam, some of which I am sharing here.
I am eternally grateful for his expert advice and I’m living proof that MCAS can be controlled if you are persistent and patient, use the methodical approach and, most importantly, don’t give up. Also, simpler really is sometimes better, according to him, which I’ll be covering in the next principal right here. Don’t miss it!