Empathy and Competency

I’m fuming. I had my Rheumatology appointment at 2:30 and I’ve been FURIOUS since I left. Here’s how my visit went:

2:30 I arrive with mini me with me

2:45 Nurse calls me back and does my vitals and goes over my medication list (which is horribly inaccurate)

2:50 Doctor comes in. Goes over my lab work and says that my CRP isn’t that high, which it isn’t but it’s still not within the normal range. I asked him if he was going to increase the Cellcept, he says that he doesn’t want to, and I agreed. He tells me that increasing it will put me at an even bigger risk of getting an infection. I told him that I currently have a UTI and am on antibiotics for it. He said, “that’s because of the Cellcept” …no. In my head, this was my response, “Actually dipshit, it’s because my husband and I had a lot of sex when he got home from his work trip and I can’t take the two medications that worked and kept me from getting UTIs”. What I said was, “I have a 4-year-old, they’re walking germ factories so I’m always at risk. I get these all the time. I have an appointment with my Urologist at the end of the month”. We decide to increase it from 1000mg to 1500mg. I tell him that I was researching the medication and wonder why multiple sources say that 2000mg is the ‘standard’ dosage and I’m only on half that. He says that’s only for people who are in kidney failure due to Lupus…um ok? I then mention that my hand tremors are worsening and ask what there is that can be done. He says, “nothing, the medication you’re on should be helping” …did I not just say they’re getting worse? He tells me that Neurology can help with that if “it really bothers me”. MF of course it bothers me! I can’t hold a pen steady for the life of me. I was behaving since Ava was with me. I shrug it off. He examines my hands and feet and notices that my left hand/arm and both feet are swollen. Good observation Captain Obvious. I asked him why only my left side is swollen to which he responds, “You don’t always have to be swollen on both sides” …ok, thanks? While I’m on the exam table, he asks about my back surgery and I tell him that it went well and explained what type of device is implanted. Shouldn’t you know that considering you were the one who told me to stop taking the Cellcept until my surgeon gave me the go ahead? I get off the table and sit back down in the chair and as he’s typing on his computer, turns to me and asks if I’m still taking Methotrexate. That’s when, internally, I lost it. I gave him a WTF look and said “No, you took me off it a few months ago”. HOW THE FUCK DO YOU NOT KNOW WHAT MEDICATIONS (THAT YOU PRESCRIBED) I TAKE!!! Why in the fuck would I be take two forms of chemotherapy at the same time for the MCTD??!! I can certainly do that if I wanted a fucking death wish, dickhead. The cherry on top…I emailed him on my patient portal on Tuesday to verify that he only wanted to get my CRP and CBC tested and not my CMP and renal function. He writes back and tells me that since I’m off the Methotrexate, he doesn’t need to test me for it. I thought it was weird but ok. So, he tells me that I need to keep getting my bloodwork done every 3 months (which I’ve been doing for almost 4 years, so no shit Sherlock). He asked me when my lab work was done last, I told him I had to do a repeat CMP (yesterday) my PCP because last week my creatine and calcium were high. Then he says, “I want to check your kidney function when you get your blood work done” …Did you or did you not just tell me, 2 days ago, that you didn’t need to check that because I’m not longer taking Methotrexate? I make my follow up for December, which I fully intend on canceling.

3:15 Appointment over. After I drive 40 minutes to the appointment, I don’t even get a 30-minute visit.

I’m so far beyond done with this fuckhead. I never liked him to begin with for various reasons, one being that he never seems to take my concerns seriously unless I’m being a total bitch. I’ve seen doctors at both UNC and Duke and neither of them were in the least bit helpful. The doctor at UNC had no idea what to do so as I was walking out, she tells me that since all she did was hand me lab work orders, she wasn’t going to charge me for the appointment. Then the dipshit at Duke has the gall to tell me that I don’t look like I have MCTD, makes me go off my medication for 6 weeks, and get bloodwork done which only CONFIRMS my MCTD diagnosis. I’m wondering if there’s a competent Rheumatologist in this state. For the last hour and a half, I’ve been researching different Rheumatologists and they either have no appointments until December or asked me to jump through hoops to get an appointment. I don’t think it’s too much to ask, to have a Rheumatologist who listens and gives a fuck about what this disease is doing to me and CAN REMEMBER WHAT FUCKING MEDICATION I TAKE. I know that I lucked out and am beyond fortunate to have an amazing PCP who deals with most of issues related to my MCTD. To find another doctor like her is a long shot, it would be fantastic to find one like her, but I’ll settle for empathy and competency at this point.

I was already stressed out about going to the appointment because I knew my Cellcept dosage would be increased. I’m anxious about the results of my lab work that I went in for yesterday. My calcium was high last week, which it hasn’t been in over a decade and it has me worried that my parathyroid is overactive again. That’s the last thing I want to deal with on top of everything else that’s going on right now. I’ve been through that bullshit and it’s a nightmare. I’m not too worried about my creatine being high, it’s spiked and then gone back to normal before. I also had to make an appointment with my Dermatologist at Duke because I have a rash on my left forearm and on the back of both thighs. It’s very possible that it’s just a part of the disease and no big deal but I’d much rather get it checked then blow it off and have something worse happen. So, my month went from 2 doctor appointments to 5. It never ends. When one thing gets better, something else goes wrong. To top everything off, my foot rolled on the carpet coming down the stairs and I fell down a few steps landing on my foot. So now I’m bruised and beyond pissed out. This day is going FUCKING FANTASTIC.

I’m going to go and be a miserable bitch until my Ativan kicks in. I’ll update on lab work results. My next specialist appointments aren’t until the last week of the month and I’m sure I’ll be bitching on here before then.

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