So, I almost lost bowel control in my endocrinologist’s office last Thursday. After honestly venting my frustration with how poorly I felt my visit to the rheumatologist was handled last spring, my endo displayed sympathy and a dry wit I hadn’t really realized was there before.
I’ve had a grand total of one visit with this PA since moving north (my initial consult was with the actual MD and left me feeling lackluster and sad that I’d left some excellent quality of care behind in Delaware). That one visit was good but less-than informative. He listened without criticism when I complained of back pain and skin rashes (those same recurring ailments that have driven me to various doctors for years), and he even agreed to followup on them with some bloodwork. That bloodwork found an unusually high titer of ANA which triggered the referral out to rheumatology (and commenced the giant wastage of timeage that was that adventure). So, yea, when viewed through the usual lens I apply to my physicians (“Did he insult me?” “Did she say something I know to be outright medically untrue?” “Did they send me home with a sterile collection jar and say good luck?”), he was pretty amazing.
But, back to the shitting a brick mid-checkup. After recounting my time with rheumatology he responded, “That’s so frustrating, isn’t it? Rheumatologists, man, sometimes I don’t even know what language they are speaking!”
(My eyes began bugging out of my head here.)
So then, he turned from the computer, looked me straight in the eyes, and asked:
What resources have you been able to find to tell you more about your conditions and explain why this has all been so difficult to diagnose and pinpoint?
Breath taken away. As was my ability to speak, form coherent sentences, and (nearly) keep my shit in place.
You see, I’ve practically made doctor’s-appointment-going a full time job for the past 4 years. Never once has a doctor asked if I was educating myself. Never once have I been told of the importance of doing my own homework. Never once have I not been laughed at for admitting that I’d done tons of reading and research on my conditions. It seems I now have to amend all those sentences.
This man actually wants me to be proactive, stay informed, and engage in a conversation with him as we work through my medical issues. As I engaged in my usual dismissive answering behavior (“Yes, I did have that rash, but it went away. I don’t think it is tied to the seasons, but I guess I don’t know, it could be…”), he actually scolded me a teensy bit. “No,” he said, “these autoimmune conditions can be funky. Would you believe I get a flare-up of Raynaud’s every three years like clockwork? Never any other time, just every three years. I know countless doctors who would laugh me out of their offices, but I’ve lived it so I know it can happen. Just keep an eye on those rashes, ok?”
Bestill my beating heart. I think I’m about to dump Mr. But IF for this 6’4″ older male doctor.
When we got to talking about my future plans – the IVFs, the possibility of more pregnancies, my desire to have his office on my side in those early days of pregnancy when my thyroid is so very prone to wreaking havoc – he offered me more advice.
“You’ll be seeing a perinatologist, right?”
I stared blankly for a while before I managed a, “I’ve always been told I’m not a potential high risk pregnancy. Is that wrong?”
“Yes,” he answered, “I think you’ve been through more than enough. I want to make sure you get all the monitoring you think you need. If you have any trouble, give us a call.”
Now, maybe its odd to be so thoroughly thrilled to be informed I’m “high risk” before I even manage to conceive, but I left happy. Someone’s taking me seriously for once, and I’m holding firm to that. (And, let’s face it, after 4 years and 3 miscarriages I’ll gladly take all the extra monitoring they can throw at me if I ever manage to get and stay pregnant again.)