Life has been crazy busy, which I take to mean that life can be full, even with autoimmune arthritis. Despite not being a fan of CAM, I highly recommend dietary changes. Unfortunately, I cannot go into detail at this time. I promise I’ll write more about what I’ve learned one of these days. Crazy busy…
We interrupt this sporadically updated blog for personal minutia.
We might be closer to getting my mom a rheumatology referral. She’s been asking for years, and the NP’s she’s seen have been condescending, rude, dismissive… (the MD was fired). Every time she went to the primary care clinic, the last person she saw was gone and there was a new NP to not listen to what my mom had to say. She’s been quite frustrated, and I’ve wondered why she didn’t go find a new doctor to actually listen to her. Apparently there aren’t very many MD’s taking medicare.
Unfortunately, the road to finally getting someone to listen has been pretty rocky. A few weeks ago, mom sent me a text:
She did not actually need help throwing up. She was doing that on her own quite well. I knew she needed help, so dropped everything and raced to her house. She has never sent a message like this before. She tends to be one of those, “Leave me alone; I’m fine” kind of people.
After reaching her house in record time, I dug out the spare key and let myself in. I’d never seen her that sick. She’d been too busy throwing up to take her insulin. Oops. Not a good sign. I asked various questions and she sometimes made sense and sometimes didn’t. Not a good sign. Suggesting, “I think you need to see a doctor,” met with significant resistance. She just didn’t want to get out of bed.
Finally I asked what/when her last glucose reading was. She’d been so sick she hadn’t checked her glucose levels all day, just laid in bed and slept and barfed into the basin on the floor (TMI, sorry). She couldn’t even remember how to use the meter for me to check for her. Persuasion wasn’t working as I tried to convince her to see a doctor, until finally I said, “I don’t think you’re in any condition to be making that decision.” Not something I ever thought I’d have to tell my mom!
My husband carried mom to the car, and one of my brothers met me at the ER doors with a wheelchair to take mom inside while I parked. By the time I got inside, not only was she in a room, but they’d already written admission orders! She spent 3 days in ICU, and a few more days in the hospital once she was out of ICU.
For all the talk of HIPAA and people being ultra cautious about sharing anyone’s medical information – even with other doctors who need the information to treat the patient, I was pleasantly surprised at how open the doctors and nurses were in answering questions about my mom. We just wrote out questions on the handy dry-erase board, and as people rotated through the room, they’d notice the questions and answer the ones they could. Anything we asked, they answered. And I don’t think it was because we delivered donuts every morning and had pizza delivered for the night shift. The hospitalist even phoned me (not my mom) a couple days after discharge to check on how she was doing and let me know about an incidental finding that needed follow-up.
Where am I going with this? What does it have to do with arthritis and the impossibility of getting a rheum referral?
Mom was instructed to follow up with an MD, not an NP, which made her finally willing to look elsewhere for her medical care while still staying in the same system that will accept her medicare. The doctor she ended up with is fantastic! We found someone who just finished residency last summer, which means she’s up on the most recent research and hasn’t been doing this long enough to be burned out. This doctor listened, looked at tons of information, and listened. This doctor didn’t brush mom off, but looked at the reasons she’d like to see a rheumatologist, and is going to do some research before the follow-up appointment (at which time I anticipate mom will finally get her referral)!
I really think it made a difference having diagnostic criteria clearly written out, indicating my mom’s score and why we believe she deserves a diagnosis. The doctor has a place to start in checking to see if we know what we’re talking about. It is amazing how good mom felt to finally have someone listen to her.
Hope your life is going well enough to also be crazy busy!