uab


Oddly enough, I was reminded of Rachel of Nottingham last week when I was awaiting a referral to an orthopedist for my five-year-long hip issue and for my year-old dad-inflicted (unintentionally) wrist injury. Dottie is still “working” at UAB, so I’m on week three (technically) of the waiting game. She delayed on a post-respiratory failure referral to a lung specialist for my mom for six weeks. Dottie should retire, but she’s never going to leave. I kinda wonder how many people will die or have permanent ailments (that should have only been temporary issues) because of her laziness.  My hip feels like someone is slamming a hammer into the joint. Occasionally it has a sharp twinge that lasts an hour or two; that can be breath-taking1 and frightening. It can also be nausea-inducing.  My wrist doesn’t hurt much. I just can’t hold things well since the incident; I drop almost everything I hold for more than a couple of minutes. It also pops every time that I move it.  But enough about those issues that everyone knows I’m lying about, what’s new with you?  In a bad way. ↩

Just Whinge-Ing It   Recently updated!


Well, I never mentioned how the rheumatologist appointment went. I guess that’s because it happened almost exactly as I a predicted. It was bad. How bad was it? It was so bad that I wish I could time travel to the past and let Rodney Dangerfield use it as material for some of his “How bad was it?/It was so bad” jokes. Everything was fine until the doctor came in. He half-listened to my complaint, said that anhidrosis isn’t a symptom of anything he treats, and told me that all that he ever saw me for was “loose joints” and pain. I told him that the family doctor said she thought my “loose joints” and lack of sweat were related. He said no. I said she thought he should treat it because he treats connective tissue disease. He went into a long rambling session about how my family doctor meant that he treats autoimmune diseases and that “loose joints” aren’t really a connective tissue disease because they don’t involve the immune system. He said that “loose joints” are a collagen issue and that they only cause problems in the joints themselves. I tried correcting him on his ignorance, but when I did, he repeated his rambling.  My mom asked if it could be from the Sjögren’s/UCTD. He said it was possible, but that those were connective tissue diseases & I didn’t have connective tissue diseases. She mentioned Mamama had Sjögren’s and he said it was possible that I inherited it from her. That “Sjögren’s is genetic” part of his ramblings was almost verbatim from the ramblings he made that time seven years ago when I tested “positive” for the antibodies related to Sjögren’s. He looked in my mouth and said it was dry. He asked about my eyes & I told him that the ophthalmologist had done the paper test years ago. He asked about the results and I practically rolled by sore, dry eyes at him as I told him that they’d been dry. He said he would test me again for Sjögren’s and that if it was positive he might consider putting me on Pilocarpine.  He then said something about Pilocarpine costing $95/month and insurance never covers it. You know, so I wouldn’t expect a prescription for it. The funny thing is that I knew he was bullshitting on that part. You see, I had been given a prescription for a medication called Salagen given to me by the UAB doctors a few months ago. They’d noticed my mouth dried out too much for me to talk. Salagen is the brand name of Pilocarpine. It costs $1.20 for 120 pills; 120 pills is a monthly supply. I left the appointment feeling like the air had been sucked out of my lungs. By the end of the appointment, I didn’t know whether I was pissed at him or myself. The longer he rambled, the more I felt myself retreating into the “doesn’t speak up for herself” zone. I started feeling incompetent. I started feeling like maybe I was the one who was uninformed.  But my family and my therapist wouldn’t stand for that thinking.  I’m not the one who: Doesn’t understand that connective tissue disease is an umbrella term for many kinds of diseases.1 Doesn’t understand that many autoimmune and non-autoimmune diseases can cause sweating to cease.  Doesn’t keep adequate patient records.  Doesn’t listen to the patient or their family.  Failed to prepare or educate myself before the appointment.  I’m not the incompetent one. He is.  My mom said I need a new rheumatologist. When I told Debbie about the appointment & about the phone calls, she said I need a new rheumatologist. Guess what I discovered in my search got rheumatologists who take my insurance?! I’m pretty much stuck with a doctor who doesn’t know what the hell he is doing.  I hate the phrase “fuck my life” but it almost seems appropriate here.  Photo credit: C_Dave via Visual Hunt / CC BY-NC Joint Hypermobility Syndrome & Ehlers-Danlos are connective tissue diseases. ↩

Call Me Janet the Divine. On Second Thought, Don’t. 



Well, I may get to see the doctor after all. I got a response late Friday afternoon to my complaints over the scheduling (or lack thereof) of my annual exam. It was from one of the attending physicians in the OB/GYN clinic at UAB’s Huntsville offices. It sounds like I will probably get to have the exam and may get the prescription for the mini-pill after waiting over a month. I am unsure of what you have experienced with the scheduling. Can you clarify for me what date you were in the office and were told that you could not be seen? I notice a cancelled appointment 9/22/15 with a no-show appointment two days later on a Thursday. I apologize if you perceived the interaction as rude, and I will address the situation accordingly, but I will need specifics of the encounter. Our clinical days are limited, and I won’t be back in the office to respond to an email until Monday, but if you call our front desk, I’m sure they can work with you to get you seen in the office. So I explained what happened back in September. I tried to do it as calmly as possible because I know that if I sound angry that I won’t be taken seriously. The day that I came in the office & was told I couldn’t be seen was actually the Thursday no-show. I showed up for the appointment and, as I was signing in, was told that my insurance wouldn’t cover the visit, so I could either pay $90 to have a birth control consultation or wait a month. I was then told that someone had already left a message that my appointment was cancelled, which was untrue. I tried explaining how I needed the medicine and asking if I could appeal the decision or do something so that I could still go through with the appointment. Again I was told that, unless I paid the $90, I couldn’t see a doctor that day. That is a lot of money, especially when you’re on a fixed income, so I had no real choice. (I was going off Depo, which was due that week, because of the risk of bone loss. I have Ehlers-Danlos, a Vitamin D deficiency, and family history of osteopenia, so I wanted to avoid bone loss.) I left in tears & have been worrying about my anemia since then. I was somewhat surprised that they had marked that appointment as a no-show. I don’t know why I would be as I’ve seen updates to my Electronic Medical Record at UAB’s Huntsville clinics where they’ve falsified results.1 I’ve wondered, since the day in September, why they didn’t go ahead and schedule my annual when I was in the office. It seems like they could have, if they intended for me to come back. And that had me wondering if the reception staff at the clinic wasn’t planning on seeing me again. Does that sound paranoid or delusional or something? Because I sort of feel like their behavior has made me feel a little more paranoid or, at least, more anxious. Anyway, like I said, I’m hopeful I will get my exam and that I will get to go on the much-needed medication asap. This whole situation has been frustrating and tiring. It would be nice for it to resolve already. I’m still waiting to hear back from the customer service people at the insurance company to find out if there are other gynecologists in town that are in network. Knowing their reputation, I would doubt there are. Maybe they’ll prove me wrong. With my strep tests, one went in and changed the ordering physician from the doctor who saw me at that appointment to the one who had seen me the time before–who hadn’t ordered the test at all. If you’re going to falsify data, you might want to make sure you turn patient notifications off. ↩

The No-Show That Wasn’t