Phoenix

Today I received a letter from the rheumatologist. She explained that she’d received the report from dermatology stating that I need a facial biopsy and they’ve diagnosed me with lichen sclerosis. She’s also received the radiologist report. There was no evidence of inflammation in my hands and wrists which is good news. She didn’t get the anti inflammatory blood test results as the lab rejected the sample. I have to have a repeat blood test

On the blood test form she has stated she suspects Bechets disease! I hadn’t even heard of this until today. So off down the rabbit hole I went. It’s a rare chronic auto inflammatory condition and the symptoms fit everything I’m experiencing. Vasculitis is high on the list and this could have contributed to my heart attack at 32 and the torn brachial artery I suffered six years ago.

Baseline treatment involves a daily medication but more advance treatment requires regular blood tests. well that’s not happening.

So I feel I need to make a decision. I’ve been standing in my boundaries for the past year and half, in regard to what I will accept medically. I have had a long medical history and multiple medical traumas. I don’t want to do it anymore.

My list of symptoms seems to grow. I am in pain every day. My fatigue is disabling, but I’m managing my needs as best I can. Yes some things I want to do have to sacrificed because I just don’t feel well enough.

I have decided I won’t have the face biopsy. I don’t want medication that not only comes with side effects but also requires multiple blood tests. I don’t want to have to explain myself over and over again to medical professionals who don’t get it and don’t have the time to try and understand.

I see and speak to so many people who are struggling to get a diagnosis or struggle to get appropriate treatment and care.

Maybe I just keep going it alone the way I am now, until I drop? It’s not that I’m giving up. I just want to enjoy whatever is left and not have myself and my alters traumatised any further.

I’m writing this when I should be rehearsing for tomorrow’s performance. Unfortunately the leaders have thrown in a song we’ve only ran through twice. Not helpful with less than twenty four hours to go!

I’ll knuckle down now and get some serious practice in before bed. I’ll sleep on the swirling medical decisions.

Phoenix