I had a long talk with my adult daughter about this yesterday (Thursday).

I’m upset because as a immunologist, Dr. M. has book knowledge of my two rare diseases…

She’s aware anaphylaxis is a symptom of both my rare diseases..

It’s important to give people grace and not attempt to give unsolicited advice/judgement on illnesses you do not personally have.

It’s difficult being stressed out and trying to convey online what happened step by step. Convey what happened online just to get it off your chest and process what happened.

Me and both immunologists in the practice have been working for months…since April to get my immune system ready/prepared to handle the COVID-19 vaccines.

I’ve been taking treatments since April. The thought was that the treatments would block/alleviate triggering my rare diseases.
Once my rare diseases are triggered, therein lies a problem. A problem that can lead to anaphylaxis if not quickly controlled.

It was hard telling Dr. M., all the symptoms I experienced. Certain symptoms from my rare diseases can be very difficult to talk about or say out loud.

The problem is Dr. M. did not have another solution. My treatments were increased in October and still didn’t work to block the symptoms.

Last month she mentioned a medication, compound, which is not covered by insurance and outside of the budget.

The biggest obstacle is my rare diseases are not under control or being controlled by treatments or medications.

Controlled as in reduction in severity of flare ups from triggers.

I explained to my adult daughter why I prefer peer lead vs therapy.

I feel and view therapist as hierarchy vs peer lead is centered on being equals.

Dr. M. has a medical license however her knowledge is purely from books vs someone that lives with rare diseases.

I have lived with one of my rare diseases since birth, I’m 45. I’m an expert on my body.

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