[vaccine talk]

I’ve got the exact blood disorder that seems to increase risk for a clotting complication with the AZ and J&J vaccines.

I’ve also had to decline medical procedures before, when individual doctors refused to follow established safety protocols for my diagnoses.

[vaccine talk]

So I guess what I’m saying is that maybe one of the reasons blanket suspensions are important is because individual clinicians have a dangerous tendency to override patient safety and autonomy, particularly when those patients are marginalized.

[vaccine talk]

These suspensions are a relief to me because I sincerely do not trust that, when it is finally my turn, I wouldn’t show up to the clinic only have someone try and coerce me into a procedure that *will* risk my safety.

Because that *has* happened to me before.

[medical bs]

A few years ago, I was supposed to have a bone marrow biopsy to rule out systemic mastocytosis. Now the thing with bone marrow biopsies is that, if you *do* have SM, they can trigger anaphylaxis, by stirring up and releasing a whole bunch of pissed off mast cells.

[medical bs]

So the protocol when doing a bone marrow biopsy on a patient with diagnosed or suspected SM is to premedicate with corticosteroids and antihistamines, and to have an Epi pen handy in the room.

[medical bs, assault]

When I asked the doctor about pre-medication protocols, she offered me 3mg of Ativan.

(Now, I also have pretty intense issues w/ bone marrow biopsies due to previously being administered one with NO anaesthetic or analgesia. And Ativan doesn’t work on me.)

[medical BS]

After a few weeks of back and forth with her office, I finally said that if they were unwilling to follow standard, published precautionary protocols, I would not consent to the procedure.

So instead of agreeing to follow those protocols, they cancelled the biopsy.

Also for the sake of clarity I should probably note that, as far as I know, they haven’t identified any specific health conditions as predisposing to this reaction.

But what I have is more or less a kind of endogenous form of the thing that seems to be happening—

—drug-induced thrombocytopenia.

I was diagnosed with idiopathic thrombocytopenia at age 4. It’s usually supposed to be a short term thing, usually following an illness or drug reaction, and then disappearing after a few weeks. For me, it just...stayed.

And for some reason my clotting function always seemed to be far worse than could be accounted for my platelet levels.

Well, that’s because it turns out one of the many, many things released by mast cells is heparin.

Which inhibits clotting, but which can also trigger an immune reaction that causes tiny clots to form incorrectly, depleting platelet counts over time.

So given my baseline issues with autoimmune clotting, I tend to be extra wary of anything that can trigger similar problems.

Officially, my diagnosis is still ITP.

Officially (i.e., according to my patient record), my MCAS has nothing to do with my platelet levels (just like how my allergist didn't believe narcolepsy could be secondary to MCAS...even though my narcolepsy has responded to Tx for MCAS)

So that adds to my concern that, were I to express concern about my vulnerability to this complication, it would not be taken seriously. If even my allergist is that poorly informed about systemic complications of MCAS, and disinclined to believe my knowledge and research...

...there's no way some overwhelmed rando at a walk-in clinic or pharmacy is going to be more knowledgeable or receptive.