Hey, hey, hey, everyone! First off, I want to say thanks for reading my blog. It’s been a great step for me in changing myself “one petal at a time.” I have been chatting with people, which I was not doing at all during the pandemic — or much at all really before that.
I tend to be terrible at keeping in contact with people. My mind is always “They don’t really want to hear from me.” So, I’m slowly getting out of that mindset. It’s been fun to reveal my life, which I had kept hidden from the public for the most part.
So, this “What the Health?” series is a focus on my autoimmune condition (GPA aka Wegener’s Granulomatosis) and my life with it. I’ve lived with it for half my life now (19 years), and it is quite the burden.
I’m always worried about whether I’ll be able to get health insurance. I’m always worried about how much any kind of medical anything will cost. The co-pay alone to see my specialist is $60.
And the communication from my various doctors over the years has been all over the place. The communication from my current doctor’s office is not great at all. I messaged them yesterday about whether I need to go back on my meds. I got a response today that I should, and they told me to go get blood work done today! Um, I kind of have a job? I can’t do that? You had four days to tell me that? I literally had to point out that my results were in for them to do anything. And the results had been in for THREE days. Tell me sooner, please.
I would love to go somewhere else, but the choices on rheumatologists are slim pickings around here. And even if I find one, they have to accept my insurance. I miss the one doctor I had when I lived in the area last time. He was WONDERFUL. But he retired. Then I got stuck with a different doctor — or should I say nurse practitioner, because in the four years I went to that doctor I saw him twice. And that NP knew nothing about my condition. And I would be in that office for my appointment for HOURS. The record was four hours. FOUR HOURS. I saw the NP that day for maybe five minutes.
At this doctor’s office, I had to jump through hoops to get an appointment the first time. They wouldn’t take me unless I had a primary care physician. I told them I didn’t have one yet, as I had just moved here. I had been looking for a PCP, but the earliest appointment I could get wasn’t for four months. They told me I needed a referral. I got one from my other rheumy. Not good enough. So, I was freaking out by then, because this was pretty much the only rheumy in the area. I absolutely needed to have bloodwork done! I emailed them a really rude email — I don’t normally do things like that — and I heard from the office manager. She set up an appointment and told me I would have to have a PCP by then. The appointment was SIX MONTHS out. Gee golly, do you think that’s enough time to find a PCP?
I do not get why that is their procedure. I understand they want a “middle man” so to speak, but I don’t get why I couldn’t just make the appointment then get a PCP. That is what ended up happening, but it was completely outrageous the way I had to do that. I mean, their policy would have required me to get that first appointment with the PCP, which at the time was four months out, THEN get an appointment with them. That would have been TEN months out, well over a year after the appointment with my former rheumy. Hey, guys, I have a condition that can literally kill me in 100 different ways if not monitored. Could you please help me? I’m not just randomly trying to get an appointment with you for funsies. I have a deadly disease, which you can see in my information sent from my former rheumy. What an ordeal.
I was able to find a PCP who could give me an appointment in two months instead of four. My PCP, by the way, is AMAZING. I love her, and I hope she never leaves. She listens to me. And, I told her all about the insanity I had to go through to get a rheumy appointment, and she found out what tests need to be done on my blood and urine, and she had those tests done for me! I didn’t have to wait for the other appointment! She is my favorite PCP EVER. She also didn’t treat me like a child for my weight or try to blame other issues I have on my weight, like pretty much every other doctor had done. And I am REALLY looking forward to my appointment with her next month so she can see how much weight I’ve lost!
It’s very difficult to change doctors with an autoimmune condition, especially a rare one. I’ve been told so many contradictory things by different doctors, that I really do have to do my own research sometimes. One doctor told me alcohol is OK in small doses. Well, that sure wasn’t true. No alcohol with methotrexate! Another one said Tylenol is OK to take, and another said that is not good. The latter suggested Aleve, which is contradictory to yet another doctor’s advice. One says bloodwork every six months, another says six weeks, and yet another says three months. And the newest ones are always like “You should know that you have to get bloodwork done every xx weeks/months.” Um, no? Everyone tells me differently!
I have had six different rheumys. The reasons for the changes were that I moved, and two retired. Of those, one was AWESOME, two were really good, two were terrible and my current one I can’t judge yet, as I’ve only seen him once. Because the rheumys are far and few between and there are a ton of retired folks around here, it’s very difficult to actually see a rheumatologist and not an NP. And there is nothing wrong with NPs in general, I just have had two I didn’t really like. The doctor seems really awesome, though, and I wish I could see him more often instead of the NP, who seems to not know much about my condition. The first time I saw her she didn’t believe that I have GPA and said that only black women get it. Um, no? I’ve had five other rheumys and a hospital doctor who all say I have it? Look at my old bloodwork? It’s all there. I was definitely worried about my treatment after that visit. But I am glad that I have a rheumy, of course.
Long post today! Thanks for reading. Until next time!
Frazzled Daisy 