Ich wirke gesund. Aber dieser eine Moment kostet mich oft Tage.
Viele bezeichnen mich wie das "blühende Leben" wenn sie mich sehen (viele bekommen mich allerdings nicht zu Gesicht). Doch der Eindruck täuscht. Ich möchte euch jetzt zeigen, was ihr nicht seht, wenn ihr mich seht.
Good news, my safe foods I’d been reacting to these last few weeks has gone back to lower reaction. It’s my last lot of antibiotics tomorrow, so looks like being ill made everything worse, which makes sense.
When I went to the drs last week, they were surprised I didn’t know I had strep throat. I said I’m just used to feeling really ill and being told it’s fibromyalgia, or just something I have to deal with, I hadn’t even gone about my sore throat snd earache 😂 This was a sympathetic locum, who said it shouldn’t be like this.
#ChronicIllness #Fibromyalgia #Fibro #ME #CFSME #ChronicPain #MCAS #Anxiety #Perimenopause #Depression #Agoraphobia #ADHD #AuDHD #Autistic #Palpatations probably more
Fellow folks with MCAS, have you seen this? I'm curious if anyone has had experience with doing this? I think you'd need to live near (or within easy snail mailing of) a compounding pharmacy, as these drugs are normally delivered in a much higher dose.
I'm going to ask my doctor about it. Food intolerance issues are so intense, I'd love some relief.
I want to talk about Briumvi & my recovery from it.
You know I love Briumvi. It fixes up my MS symptoms like nothing else ever has, and seems to be successful at preventing more MS damage.
BUT. MCAS does not like Briumvi. It flares as soon as Briumvi hits my system. It's usual to prep with steroids and a single benadryl. I prep with double the steroid amount, two benadryl, a cetirizine, a fexofenadine, a famotidine, azelastine nasal spray, and allergy eye drops. Then I take home a 5 day course of steroids. If we don't do this, I will be hospitalized.
Recovery is a combination of fatigue from getting the procedure itself, recovery from the MCAS flare the getting med put me into, and recovery from all the various things that flared while in the space Briumvi had ceased working because there was little left in my system.
This time according to my labwork I also have a massive infecton right now. It could be any of the infections Spouse had or a brand new one for me.
I have to sleep 16-20 hours a day right now and this can go on for 2 full weeks. Briumvi recovery is hard. It isn't pleasant. I am very ill.
Y’all know that mast cells are immune cells?
And mast cell disorders like #MCAS #Mastocytosis (via Long Covid, other chronic infections and immune events, EDS etc) are *immune cell disorders*
“Covid doesn’t cause immune damage” people, we can’t spell it out more easily for you
Barbara Wimmer - shroombab
Lotte Is Antifa-scist 🚩
Brain Stew (Idris)
Christina Koch
Hollie
genXcrone (she/her)
Michelle
lez-anya
Emily Johnson