I feel like crap and am exhausted, but I feel like I need to update since I'll forget things if I don't.
I managed to get all of my medical records together, including a copy of the CT Scans. However, when I pulled up the CD to look at the scans, the first image worked, but the others said no pixel data. So either the CD is fucked up, the scans are fucked up, or I don't know how to view it properly. So I will spend part of tonight trying to be sure I'm not just being dumb before I call UT tomorrow to fuss.
I do think it's hilarious that my labs from my Endo at UT all are very easy to read with nicely bolded lettering on the tests that were abnormal. All of the abnormal ones are marked as H and L for high and low. I find it funny because he told me everything looked normal, and it's very obvious from those labs that that is not the case. I was pretty impressed with the hypertension doctor's notes, though. I imagine they're only that good because she was training some guy who was writing down literally everything we said. But hers seem to be the most accurate for what I told her was/wasn't wrong. One thing I found interesting in her notes was a section that said this:
Her uncontrolled HTN could be associated to untreated sleep apnea, high salt diet, and possible Cushing's Syndrome which may be cyclical. Patient has a phenotype very suggestive of hypercortisolism but her diagnostic tests so far remain inconclusive.
I don't have a high salt diet and told her that, so I'm not sure why that part is mentioned. I watch that so much so that on the rare occasion I do eat fast food, I can taste the salt in the burgers are whatever because it's so strong, and I find it incredibly disgusting. When I was younger I loved salt, but my tastes have changed so much since then that I don't care for loads of it anymore.
What I did find interesting though was the mention of cyclical Cushing's. She and I never discussed that. In fact, any time I've brought it up to doctors, I've been told, "That's not really a thing," "I agree with the first one on that not being a thing," and lots of eye rolling. So the fact that not only did I not bring it up to her, but she came up with that on her own is at least encouraging. It makes me feel like someone somewhere will listen, even though she's a hypertension doctor and not an Endo. I also liked that she said my tests remained inconclusive. That has been my opinion so far. Yes I've had high tests, and yes I've had normal tests. So, so far I've felt like I've only been consistently inconsistent and can't know for sure one way or the other, and I feel like she agrees with that. It's amazing though how much a little open-mindedness from a doctor can make me feel better about everything.
I am extremely stressed out about my trip. I've been trying to get work things done so that I don't have to deal with that while I'm gone, but I'm having a hard time doing that because of getting things together, hurting from getting things together, not sleeping because of overthinking the appointment, etc. I'll be glad when this shit is over with. I just want to sleep for a week. I did go to my boyfriend's for a little bit to try to keep my mind off of the appointment. It seemed to help, but then I started dreaming about it. But at least my conscious mind was distracted enough that I didn't feel like time wasn't moving. I really wish he could have been here this week. He talked about coming stay here/bringing us to the airport, but with his own doctor's appointments, we couldn't be certain he'd be able to pick us up from the airport since I don't know what day we'll be coming back. It does suck that the best place for me to park to be able to deal with pain/traveling costs $20/day, though. That's going to suck big time. I have parked in cheaper parking lots, but by the time I waited on the bus, got on the bus, got to the terminal, etc, I was already in tons of pain. So that's not going to work.
I bought extra pants and such since I'll be gone for a while. I didn't buy much, but the reason I mention it is the only style this one place had out (that I know offhand carries my size) was skinny jeans. Skinny jeans in a size 22 lol. And while I wasn't thrilled about it, I noticed that it definitely accentuated the smallness of my legs. So I will definitely be wearing those this Friday. I just want all of the visible symptoms to be staring them in the face when I go so nothing is overlooked.
My mom's flying in tomorrow night after work. I haven't even started packing yet. Our flight Thursday is around 9:45 CST, and there's thankfully no timezone changes to account for. The first flight is 2.5 hours, and the second is 45 minutes. I forget how long the layover was. But given the last time I flew the flight was only an hour long and still caused me tons of pain, I am not looking forward to the traveling. That's a big part of my anxiety. I am so worried I'll be sobbing in the bathroom somewhere. I did do better than I expected when I went to California more than a year ago. I wondered if it's because that 3.5 hour flight was on a bigger plane than I'm used to. The short flight planes are usually 1 seat on one side and 2 on the other, and it makes for really cramped space even if you're not overweight. So I'm hoping to God the space thing is why I have a hard time flying home. If it is, I might be able to actually fly home through New Orleans instead of Baton Rouge and see my family a little more often. That would be nice.
Yeah I'm glad I didn't wait to right all of that down. There's no way I'd remember all of that. x_o
