If you’re wondering why I write a lot about mast cell disease it’s because I’m constantly reminded that today could be my last day to write about this or anything else.
I’m not being melodramatic, either. It’s ironic how many ways this disease can kill us even though the experts say those of us with MCAD generally have a normal lifespan.
Ha! I am finding that difficult to believe here.
One of my worst symptoms/complications/comorbid conditions is the fact that I faint easily. The medicines (if I count coffee as a medicine that is!) are helping a lot with everything, including the dysautonomia symptoms, but I still get triggered pretty easily and when I do, like I said, I faint very easily.
Which can be very life threatening, especially when you live in a two story house with lots of stairs!
It can also be painful. Last year I (over) stretched the tendons in both feet when I fainted. It was really bad — and I did it twice (!). It took months for them to finally heal. I couldn’t wear shoes for weeks and I still have to be careful with which ones I wear. Both feet hurt again now whenever I’m inflamed, just to remind me.
What complicates things further is we figured out if I faint and slump down with my head above my feet, I have what looks like a classic grand mal seizure, too, because the blood rushes out of my brain. Which is no fun for me or for anyone witnessing it and could lead to serious complications, like having sudden heart failure, which I read can happen to people who have seizures.
It’s really scary, to be honest.
I had this problem as a baby/toddler and it went away around kindergarten but then came back at me hard again last year, just as all the other symptoms were ramping up. For some reason the OTC Zyrtec and Claritin both really triggered it when they wore off. I had my doctor switch me to prescription cyproheptadine instead and he told me to increase my caffeine intake, which I did.
I’ve been able to keep it contained ever since, for the most part. I think I’ve had one more fainting/seizure episode since getting my medicines and dosing right. But the threat is still there, just under the surface, just like all the rest of my 54 symptoms I had just before my dx!
Just this morning I was reminded of how easily triggered I am when I grabbed my phone and headed outside to snap some pictures of my tulips which are in full bloom (all 100 of them!) so I could write an Honest Review on my housewife blog about them. I was fine for about 30 seconds, just long enough to take this shot:
And then the insanely thirsty feeling overcame me, along with the feeling tingly from head to toe and sort of disconnected from myself and I got really, really dizzy. Then I started seeing stars and I had to sit down RIGHT NOW or I would have fainted and fallen down for sure. At least the grass would have cushioned my fall.
I’m lucky the wasps weren’t out because they are almost always in the grass and I left my epipens inside (whoops!). Had I fainted and landed on one and then been stung it probably would have done me in at that point, my blood pressure had already dropped so quickly.
Now I’m back inside, safely sitting here wondering, was it the sunlight? The pollen? Both? Neither??
I do have some clues, actually. Yesterday, after opening all the doors and windows to air out the house, I really began noticing an eruption of allergic activity from head to toe including itchy ears, anxiety, random, lone hives on my face, regular hives all over my belly and a few of those super concentrated hive thingies I get, too. I was sneezy and had a bad wheeze on top of all that, and I woke up to find it all still there along with allergic shiners under both eyes.
So I am obviously getting a big histamine rush and while it might have a lot to do with my ovulation and hormone fluctuations (a real possibility!) my lovely flowers that I love so much are also probably contributing to it some, as well.
I mean, of course they are, it’s why I had to banish floral bouquets from my house after last Mother’s Day sent me into degranulation hell afterward:
It’s just so not fair! I love gardening, especially flowers, but even gifts from my hubby and kids and even my own floral bouquets from flowers I grow myself (!) are my nemesis now.
Then again, so are all the weeds in the yard and the back field, which are also blooming like mad.
Then of course I am surrounded on all sides by farming and there are fields of wheat, corn and potatoes (yum!) for as far as the eye can see.
Beyond that, the wildflowers are blooming on the foothills of the Tetons, just up the road:
You know what? It’s hopeless. I think I better talk to my doctor about doubling my antihistamines or something…