It’s vasculitis awareness month. I don’t have the time and the energy to do live videos like some of these other heroes do. So I decided I’m going to share pictures of my journey. For awareness, and for those of you who like to pretend sick people are not sick if they don’t look sick every time you see them. I will share a different picture every day.
If you don’t already know, vasculitis is already a rare disease. The one I have is even more rare, and was formerly known as Churg Strauss syndrome. It is now known as EGPA, which stands for eosinophilic granulomatosis with polyangitis. (How the hell did Siri get all of that right, but she can’t tell the difference between “our“ and “are” or “except and accept”!?) EGPA is diagnosed in 1 to 2 people out of every million and was featured on the fifth episode of House MD as the first working diagnosis if that tells you anything about how rare and confusing it is, to both patients and doctors. I have seen the deer in the headlights look. I am an attorney. I am trained to recognize that. I have also seen complete astonishing looks from doctors who listened and wanted to learn. I have also had the best doctors bring in students so they could meet somebody with my condition because they never had. Those are my heroes.
The picture below seemed the appropriate one to start with because it was the day I was diagnosed (again) in Tampa. Yes, it can affect any organ including your eyes. I made the appointment on one of the last days of my 10 day hospital stay, and then I waited five months for my appointment with one of the specialist listed on the specific vasculitis page (I was diagnosed in 2015 by my hematologist, who had to fellowships at the Cleveland clinic in Ohio and first-hand experience with my condition, adding that I was a “textbook case,” and then again in 2016 because my first rheumatologist didn’t want to accept the diagnosis.
By that time, I had dealt with so many doctors that didn’t understand or were afraid to diagnose or treat me, and they had just about convinced me I was just crazy. I was floored when I walked out and told my dad I officially had it and was starting chemo. (A lower dose by a long shot compared to cancer patients. But still not pleasant.)
You might want to just mute me for the next 30 days if you don’t want to see pictures like this one. But I’m putting it out there for other people who may still be struggling for a diagnosis, being told they are crazy, being diagnosed and then undiagnosed, having doctors tell you you can’t have something because it’s rare, as if “rare” means “nonexistent,” and who have lost family and friends who can’t process or handle you being sick, so they abandon you, minimize everything, accuse you of making yourself sick or wanting to be sick, and even being a drug addict, because they don’t get it. (Eventually, you have to cut ties with people like that no matter how important they once were to you, if you want any chance of preserving your mental health.)
Getting extremely ill is the quickest way to find out who your real tribe is. If anybody else out there is dealing with the same things, it is isolating. And it shouldn’t be. I still wonder what it was like for my late husband to struggle with cancer before Internet support groups were available. So for the next daughters, for anybody who just wants to know that somebody understands, and even for those who tried to steal my meds, this is for you.