So here is my story. Since I was 30 (I am 60 now). There was always something off with my health. Heart palpitations, bad back, IBS, panic attacks, strangely tired, complete loss of energy, flushing for no reason. In my late 40′s/50′s I had to go to the emergency room for turning red and nearly passing out after falling down, having sharp pain, taking penicillin, taking NSAID’s like ibuprofen. And worst of all….. I would get bloated and bad hangover like feelings after a beer or a glass of wine. Despite all that, I kept fairly active from my 20′s till about age 50 with backpacking, x/c skiing, sailing, bicycling, hiking, raising a family, get a MBA, running, swimming. working out.
But it got harder and harder to do that stuff. It seemed like anything that got to be close to being aerobic would make me tired and dizzy. I remember one day I was biking home from work. It was a 7 mile ride to the light rail and then to home. It was about 100F outside. But when you are riding you don't notice the heat. But about 3 miles into the trip I felt tired.....then more tired.....then even more. It got to the point where I could not pedal....I had to pull over, find some shade, and rest. I was flushed all over too which made no sense.....
So eventually my doctor said “something is not right”. She sent me to an Allergist who said it could be one of a few things. Then some tests including a visit to the Cancer Center for a bone marrow biopsy (that was fun). All that verified that I had Indolent Systemic Mastocytosis.
So I got started on antihistamines.....For some reason they really messed me up in the morning. I had a terrible time feeling tired, dizzy, nauseous. I finally, after a couple of months, got on a regime of zyrtec and zantac that worked. That was 5 years ago. I usually end up in the ER once a year. Its usually because I could not keep up with a fever and would start to flush badly. My bad times start with a flush, a worse flush, then the shakes, followed by nearly passing out along with forceful D and vomiting that won't stop. When I get to that point only an IV of benedryl gets be out of it. What I have learned is that keeping up with the symptoms with lots of zyrtec and benedryl will keep me out of the ER. Also Tylenol and cold baths to keep the temperature down.
I have lost about 20% of the quality of my life. No alcohol
. I find it hard to exercise. My afternoons I feel tired and have some D. Travel is complicated. I have found that I need to limit my air travel and pre-medicate a bunch when I do it. We used to do Home exchanges in other countries. But the last two times had to cancel at the last moment as I was too unstable. I have not given up on that one though. I live in Sacramento where we can have 2 weeks or more weeks over 100F. That's a killer for me. If its cool outside I can enjoy the sun but from about 75 F and up...add some sun and I start flaring. In the shade I can only take up to about 85F. So during the summer I stay in my AC home, my AC car, and AC stores/restaurants. We are thinking of moving this year to the Pacific Northwest to get to a more MASTO friendly environment.
So that's about it. I work half time but will retire this June
I do a lot of photography for fun and microstocking. I have a blog on it. In fact I just wrote about doing photography with MASTO. I will post it in another section.