That was a long and difficult appointment. My endocrinologist was hoping I wouldn’t come back and she hadn’t ordered any of the investigations that we discussed.
I knew that. I asked my GP to do the ones a GP can order.
I had to beg her to help me. Again, the almost throwing up in her rooms and a few tears, and a blunt assertion that I am VERY unwell. I need help. She said I really should go back to my rheumatologist, she could surely manage my prednisone. I looked her in the eye (with tears in mine) and told her that I every specialist tells me to go see someone else. Rheum says go see immunologist who says go see endocrinologist who says go see rheum, who send me to neurologist, who throws up hands and suggests new immunolgist….on it goes.
In the meantime, I am sick. Not just chronically ill, as usual….but acutely ill. Every day.
She apologised. And started looking into everything. And she made a plan. I’ll write it all up when I can…I’ll need to refer to it. Need to do it while its fresh in my head.
Takeaways, I’m to tell doctors I have #addisionsdisease. She has given me a letter to keep on me always, so that if I go into @adrenalcrisis again, I’m to go to the ER and give gthem the letter, which tells them what to do – IV hydrocortisone and fluids.
She prescribed an autoinjector of IM hydrocortisone to keep at home, so that if I am critically unwell, the kids can stress dose me.
She told me to get another medic alert bracelet and put Adrenal Insufficiency on there, and then acknowledged that the ER never look at them anyway.
She’s ordered a raft of tests to get to the bottom of my bone density. My hip measurement is 4 standard deviations above the norm. This happens 3 in 100, 000 people. I am that rare. Even crazier, my spine measurement is 7 standard deviations above normal. That puts me in the one in several million people. The abnormal bone metabolism HAS to be a clue to why the F I am so sick. That’s why I’m pushing for treatment…someone has to look at EVERYTHING (and I know its a lot, I live with it every day) and try to tease out some common threads. Not with view to ‘cure’…I don’t believe that’s a reasonable expectation…with view to the best quality of life possible.
She also ordered bloods for my HRT levels. The testosterone cream is working for me, and she admitted that she didn’t think it would. She also admitted that I have a lot of really rare things gonig on, and she felt out of her depth, and didn’t want to treat me.
But she has taken me on. I can understand her point of view – who WOULD want me as a patient? Bottom line, she couldn’t turn me away. She is a doctor with a conscience. She might not be enjoying this, but she is on board now. She’s a good person. I believe she’s going to do her best to help.
So, few more tests, back in three months to review. She’s going to talk to my rheumy and my immunologist…and maybe call in my neuro. I hope they all have a lovely chat over coffee or something…lol.
That was one of the hardest appointments ever, but it was also a breakthrough. I wish I didn’t have to fight so hard for help, but that’s just the way life is. Rare, complicated, and in chronic pain. The physicians triple crown!
Bottom line, shes going to try and help. Can’t ask for any more than that, and I’m grateful. #chroniclife #rarediseases