No More Rheumatology?

I had my twice annual doctor appointment this past week. My last visit in May didn't go so well. I was hurting and needy and goodness me if some doctors aren't just like a man looking for a one night stand, they don't want you in the problem phase! I felt judged and misunderstood and diminished and not listened to. So I left in a huff and declared I was going to find another doctor which I have not done, no not at all. Haven't even started looking, it's just so overwhelming. I rationalized since my Fibro is pretty well managed, and a new doctor wouldn't be able to do much else for me, I could skip out on practicing what I preach. Not very noble but at least I'm honest about it. Well my mood as of late has been pretty grouchy and I was worried I would wake up the morning of the appointment in hell-woman mode and spew it all over my doctor. After the last appointment it became very obvious negative emotions are a massive hindrance to my communication with her. But I woke up and didn't hate the world and went in with a calm and open mind. I wasn't going to diminish my reality, but I wasn't going to react to it in front of her either.

This time it went well, but I wasn't asking for anything, just routine maintenance. It was probably the most normal doctor appointment I've had since I got sick in 2005, matter of fact. So I came out with it and asked her point blank why I have been hearing from quite a few people that Mayo Clinic in Arizona does not treat Fibromyalgia patients anymore. She got "that look" on her face. Like she knew but couldn't say. She explained it's not that they wouldn't treat a patient who has Fibromyalgia in the primary care department as a primary care doctor, but Rheumatologists weren't seeing Fibromyalgia patients anymore as a specialty. Now this is one of my worst fears come to life, that Rheumatology as a practice would kick Fibromyalgia to the curb since more and more research is confirming Fibromyalgia is neurological and not a rheumatic illness after all. So I asked if Neurology was picking us up? No, she all but laughed, they were not. Now I personally have never been to see a Rheumatologist but hear their consult can be quite necessary to confirm a diagnosis or support a disability claim. They are the specialty that has housed our illness for over 20 years and established the diagnostic criteria necessary to separate Fibromyalgia from a "wastebasket" diagnosis. Is it possible we, the misunderstood, underrepresented, overly-blamed, confused, exhausted, pain-racked Fibromyalgia patients of the world will be left with even less acceptance in the medical community? Less doctors with a responsibility to help us? No specialty to claim a field of study or channel of research?

Holy Mary Mother of God I had to get my rosary out and run a few decades! This was not good news, not at all. We can't take less, we need far more! How are people going to survive this illness in the changing world of healthcare and insurance and medicare? So many are hardly surviving it now. We don't have any give to spare! How do you make a school of medicine claim an illness? Is there a process, a petition? Are people already doing this? So I came home full of questions with no answers and a heavy sadness in my heart. This problem seems insurmountable, how to get adequate medical care and social services to Fibromyalgia patients. So many people have this illness but because of the stigma of it not being real, since it's a new variant to modern medicine, nobody wants to admit to it or talk about it. How many times can someone tell us our illness is our choice or all in our heads or because we are depressed or drug seekers before we just shut our mouths and go about our business, swallowing the pain of a thousand swords? For so many it doesn't take long. We have a problem friends, and I don't have any answers. Yet. But at least I now know why Mayo will no longer treat Fibro.

Thanks for joining,
Leah