I thought about changing the name of my blog to “Life In The Mast Lane” after it came to me this morning while I was listening to some classic rock tunes, trying to distract myself during a particularly bad patch I had right after I woke up. I decided to just make it my new tag line instead because it fits.
I had barely opened my eyes, let alone put my feet on the ground, when it allll started back up and by the time I was stepping into my morning shower I was completely degranulating. This time I was in soo much pain I just cried and cried and cried and cried some more, literally until I ran out of tears.
The hubby wanted to run me to the ER, of course, but I reminded him they can’t help me. I couldn’t pinpoint the pain if I had to. It’s so hard to describe because it’s everywhere and nowhere at the same time. I literally hurt from every cell it seems and they would have no clue what to do with me.
My hands, feet and face (!) were ice cold, even during and after my shower, and I shivered all morning because I was freezing from within again. As it was happening I felt feverish but checked and my temperature was 96.4, which is actually typical. I always feel feverish when I’m running a low temperature.
I was red and itching from head to toe, inside and out, and my voice was nearly gone when I woke up. My throat was already swelling shut, my lungs felt heavy and wheezy and my mucus factory was working overtime in every nook and cranny, but the morning medicines settled most of that right down, thankfully.
That’s part of how we know it’s mast cell disease; because these mast cell targeting medicines work miracles for me and quickly, too. I feel so lucky to have found them!!
Still, it’s frustrating because spring is just really getting going and I want so badly to be out there in my flowerbeds and helping with the chicken coop but I can’t be outside long without REALLY getting triggered right now, even with the medicines, so I’m hanging inside feeling useless and wondering what else I can possibly do.
I am already taking my extra antihistamines the doctor gave me to use on bad days but that doesn’t seem to be helping much. I’m on two H1s and an H2, and they definitely help knock down symptoms so I know they’re working. If I don’t take them I am far, FAR worse, but I am still being really triggered these last few days (again, sigh) and they aren’t touching it if I am outside long. I’m sure it’s a combination of the pollen/grass/molds being stirred up out there and my ovulation.
Honestly, I feel like I’m stuck on a never ending ride at Disneyland that I never wanted to go on to begin with and can’t figure out how to get off of!
Of course this ride isn’t ending any time soon but I just have to figure out how to stop being so reactive so I can function. I’m looking into increasing the Gastrocrom (or cromolyn sodium oral, which is the generic I’m on) since Dr. Afrin did mention it may not be a histamine problem alone causing these “allergic” symptoms.
I’m not the only one suffering here, though. My son is going through the same thing and when he came by yesterday he showed me his granuloma annulare was flaring and he also had this big, weird rash on both arms that came up after he mowed his lawn. We’re sure it’s mast cell driven, like so many other things we both struggle with.
I’m afraid I may be relegated to sitting spring and summer out again and the thought completely horrifies me!! I’ve made too much progress to not be able to contain this through the next few months. I really need to get into see my doctor soon….
…to be continued.