It’s a strange reality I find myself living in, knowing that I am just one or two doses of medicine or a bee sting away from severe, potentially fatal anaphylaxis at all times.
Imagine being murdered by this cute little guy!
Like most people living with mast cell disease, I’m keenly aware of how precarious my situation is but at this point I am way past the fear of death. There’s no guarantee that the medicines I use to control my disease will always work and won’t suddenly turn into triggers themselves, sending me back into full blown mast cell hell, because that’s the way this thing works.
Even my “safe” everyday items like laundry soap, shampoo and the very clothes I wear and the sheets I sleep on can become my mortal enemy for seemingly no reason!
One patient I know of actually opted for assisted suicide after she found she could no longer tolerate any fabrics without triggering a horrible reaction. Here is a quote from her farewell post to the community:
Some of you have followed my struggle to find clothes and bed linen I can tolerate. Lately, I am simply running out. I no longer have clothes I can wear without my skin “burning up” and my body going into an allergic state...Anne Ortegren
Can you imagine being allergic to your own clothes?!
Well I can because I have experienced it and all of the other debilitating issues Anne speaks of in her farewell message, but luckily the medicines are working for me and have brought me back from the brink of wanting to end it all myself.
I’ve grown to accept that this is my lot in life and rather than feel sorry for myself or live in constant panic that I’ll end up back like Anne with no hope whatsoever I am just living my life to the fullest while I can. I do my best every single day to enjoy the little things – the beautiful things – here at our little homestead.
And there are so many of them!
Like the rose my hubby bought me for Valentine’s day, which came with a poem he wrote himself…
In the thirty years we’ve been together he’s written me a lot of poetry, which I absolutely adore about him (among many other things). Of course strong emotion triggers my immune system so I have to be careful not to get too carried away with getting all sappy over these things.
Sometimes I tease him that he’s trying to bump me off by being so nice. 😆
It’s why looking at photos of when we were young or when our kids were little is so difficult. I get all choked up so I try not to overload myself with nostalgia but it’s sooo harrrd! I have the nostalgia gene, too, unfortunately.
It’s not just the human children that does it to me, either.
Yesterday I was going through photos and found this one of Zumi when she was a baby and even that was enough to get me all teary-eyed! Which then triggered the sneezing and wheezing and forced me to grab my inhaler before I ended up in full degranulation station. Once it starts, it’s difficult to stop so it’s better not to let it happen at all, if at all possible.
But just look at her, she was so precious!
It wasn’t the photo itself that triggered me but the remembering that we were just starting to build our sled dog team when she was born. I had only been diagnosed for a year at that point but was already feeling so much better and finally had hope for the future for the first time in years, which gave me the courage to do something crazy like take up dog sledding, but it was still a scary time for me.
To be honest, I wasn’t sure I’d live to see Zumi grow up, the same way I wasn’t sure I’d live to see my kids grow up but they all did and I am so grateful I made it through. Now I just want to see us all live to grow old.
Last week I snapped this picture of my middle son who, like me and his uncle who just passed from it way too young, also has mast cell disease. He was wiped out after just an hour or so of playing with the pups in their “playpen” while we mucked out the kennels.
It’s one of those that I can’t look at for too long or I’ll trigger myself but it was a beautiful moment among many here.