Most people are surely aware they will die, but I don’t think they go through their lives thinking about it from minute to minute, hyperfocusing on all the ways that the grim reaper could suddenly spring out and snatch them at any moment.
Which is something I’ve had to try to force myself not to do because with this disease you never know!
It was really unhealthy how fixated I was with how easily I could die from a mast cell reaction and to save my sanity and focus on getting it under control, I had to rework my thinking. Some days I do better than others but this morning I was rudely reminded that in an instant I can degranulate from head to toe and there’s a good chance I may not regranulate back again (that’s not really a thing, I just made that up but anyone with this understands what I mean lol).
In case you feel lost, degranulating is what your mast (master immune) cells do when they spew out their chemical mediator contents, like histamine and heparin and inflammatory cytokines and dozens of other things meant to help us at different times for different reasons. We all get mast cell degranulation, you just get it in a healthy way where mine makes me sick and wants to kill me. It’s like I am being poisoned by my own chemical factory, if that makes sense.
Think of your mast cells as your personal medicine cabinet. Your body dispenses whatever substance is needed at the time from these cells and they also recruit other immune cells to respond to illness or injury.
Since my immune system is malfunctioning, my mast cells will sometimes “leak” these chemical mediators or it can suddenly go haywire and dump every single mediator they hold all at once, from head to toe (we have mast cells in every tissue, even down in our bones) either triggering severe and sudden anaphylaxis or toxic shock, either of which can be fatal.
Mostly, though, I just leak and am sick all the time, living in a state of almost constant, low-level anaphylaxis which I can keep somewhat under control with medicine. Thankfully.
Why am I telling you this? Because I feel like understanding why I can barely function in the world helps put this blog into perspective. And I like to bring awareness to mast cell disease because it’s important to reach people with it who are looking for answers from their doctors like I did for so long.
It’s a bit ironic that my homesteader lifestyle has come about as a direct result of having mast cell disease, and in an attempt to control my disease through growing my own healthy foods, getting lots of vitamin D and sunshine and exercising every day I am actually putting myself at risk of sudden death.
Not just because I am allergic to bees and heat and pollen but also because the more I do, the worse my immune system can react. So I have to find a good balance with everything, including physical activity and even emotional expression.
Yes, I can literally hospitalize myself through strong emotion!
I would laugh but it’s not funny.
Okay, maybe a little funny. 😄
So this morning, I headed out all chipper and ready to dig in and got about two rows of weeding done in the pumpkin patch when that familiar feeling started to come over me and I knew I had to drop to the ground before I passed out and hit the ground hard. So I stumbled a few feet to the grass and laid down flat on my back, hoping there were no spiders or ants or bird poop under me.
That would have just added insult to injury!
I laid there for a good five minutes, before making my way back towards the house. I did not want to go, but I know the routine. No working outside for me today – it’s too risky. 😪
Defiantly, I sat on the steps, feeling defeated and kind of wishing this would all just end finally because I’m tired of not being able to live a “normal” life, whatever that is. My life is dictated by my hair trigger immune system and I’m held prisoner by it. My house, which I love, even feels like a prison some days.
I thought of that as I sat on the steps: I am being forced to go back inside my prison cell.
Then I took a moment to look around and realized that for a prison, it’s not that bad here! I mean, most prisoners don’t have a latte machine. And we do get some lovely sunrises and sun sets…
Also, the grass and flowers are prettier than any prison exercise yard I’ve ever seen…
I’m sure prisoners have birds come visit but they probably just get crows and vultures where I get these cute little swallows…
I also get these collared doves, which belong in prison!
In prison they don’t get to go collect fresh eggs and flower petals to make potpourri with, either…
Maybe they make them pull weeds in prison, so we may have that in common, but the difference is, I don’t have to do it. If I want, I can let the weeds take over and let the garden die and…
Oh, who am I kidding? 😆
Hopefully I’ll be able to get back out there this evening and finish up. In the meantime, I’m going to take it easy.