I’ve returned from my unexpected hiatus to find a few interesting things have happened while I’ve been away from the internet these last few days.
First, I got an email response from Dr. Afrin himself (!) after I had written for info on the 20/20 research study. So that was exciting. I won’t share the entire letter here, but I will say that the study is moving forward, albeit slowly, and we will hopefully know more about the genetic aspect of mast cell activation syndrome soon. It could really help to explain my family while confirming to Bonn study.
While I was gone taking care of some much needed offline things, including doing some home remodeling and then tending to a seized-up back and migraine for several days afterward, I received several messages and emails asking me if I had heard about this or that person in the mast cell community. I have to admit I have no clue whatsoever about anything happening further than West Yellowstone, Montana, since that’s where we’ll be taking the pups to run dog sleds soon:
I have such limited energy so I try to use it for doing as much offline stuff while still spreading positive information and #mastcelldiseaseawareness and doing research and sharing my personal experiences here when I can. I tend to ignore most non essential things and just focus on what I’m doing in my personal journey to heal, tossing the rest aside. Otherwise I get too caught up in the dramas and traumas of others and make zero progress of my own!
And I am making progress, despite a bit of a setback after overdoing it recently. Overall I am feeling much better again, although I went to bed last night with two huge hives that randomly appeared on my upper leg. My phone was almost dead so I didn’t get a picture of them, but they were pretty big and prominent and there for seemingly no reason. I woke up itching and burning again like I have a sunburn just under the surface and then my period came as a surprise again. I think menopause is coming, which is scary.
I’m keeping my epipens nearby just in case and making sure my phone is charged! 🙁
It seems like I am having a lot less inflammatory symptoms and even the allergic ones aren’t as bad these days, though, outside of my period, so slowly but surely things are getting better. I did overdo it moving cabinets and sanding handrails and banisters but our DIY has been on hold for far too long now and some things are worth the price. Spring is coming and there will be plenty of sacrificing then, too. Again, some things are worth it.
Anyway, thank you for your kind emails and I’ll be back to writing my regular articles again soon, but in the meantime, check out these if you haven’t seen them yet: