As I mentioned before, prior to the COVID crap, my job required me to drive long distances. For whatever reason, I always broke the trips up into thirds in my mind. Not halves or fourths but thirds. So I guess it’s somewhat fitting it will take me three days to get to Pittsburgh. My first “third”—I made it to Tulsa tonight. Long drive but not unbearable. I guess I shouldn’t have been surprised in both Texas and Oklahoma that no one is socially-distancing, and no one is wearing masks. I am definitely the oddball when I’ve had to stop for gas or bathroom breaks. Oh well. But it’s a lot easier to remember to put on the mask when I see other people wearing them. There were times I would forget and have to go back to the car to grab one.
In keeping up with my recent fashion statement, I am wearing my compression socks while driving. I still can’t believe how this prednisone has affected me. It’s unreal. Starting today, my dose dropped down to 20 mg (for another month, ugh) so I am desperately hoping that helps with this swelling. Trust me, I have been a lot fatter than this but I never felt this “heavy” before. It is a deliberate chore to have to lift these fluid-filled legs. It will be nice when this subsides so at the least I don’t have to keep bitching about it.
I had a message from the doctor in PA late in the day Wednesday asking if I’d had all the blood work and urinalysis done. Of course I had—two weeks prior. Apparently the lab hadn’t sent over the results yet. Thursday morning I went to Tri-Core to figure out what the problem was. When I was there initially, I filled out a form with the doc’s info, phone number, fax, etc., since she’s out of state. Clearly that didn’t do any good. The phlebotomist had to call the main office to see why the results hadn’t been sent, and I was put on the phone with someone there. She said that they ended up with an extra vial of blood and didn’t know what to do with it, which was her explanation as to why the results weren’t sent to the provider.
So… did they call the doctor to inquire? Of course not! Did they instead just sit on the results for two weeks until I followed up with them? YES! Because why call the doctor to get answers when you can just do nothing? Son of a bitch.
I swear… why am I even surprised at this stuff anymore?
I don’t think I’ve mentioned this before but this blog was created at the suggestion of my therapist. I had gone back to therapy sort of around the time all this crap started happening to me but it was mainly to deal with all the anger I had (and still have, clearly) at the medical community, not so much dealing with the news of the disease itself. She thought it might be a good outlet for me. I think it DOES help me to put stuff here instead of monopolizing every conversation about poor poor pitiful me (we miss you, Mr. Zevon).
One of the first questions the therapist asked me way back when was did I think this health care issue was a systemic one or one that was directed at me? What an astute question! Had I answered that I thought I was being specifically targeted, I am pretty sure the therapy sessions would have gone down a completely different path. But of course… NO, this isn’t about me. It’s about a system that prioritizes profits over people and year-end bonuses over health. It’s about doctors who are burnt out, who didn’t sign up to be at the mercy of insurers, who didn’t realize that they were going to have their hands tied and be prevented from actually providing good health care. And I think most of them just figure they’ll ride it out—retirement is around the corner, just go with the flow, then get out.
Good luck to us all.
More blood work and an EPO shot yesterday. Can’t complain though… I believe it’s been six weeks since my last shot, which is truly amazing! And my hemoglobin wasn’t terribly low—9.4. I was glad to get the shot, actually, since I won’t be able to be seen for the next five weeks. Hopefully that will keep me going until I get back to Albuquerque and complete my 14-day ‘quarantine.’
The labs that the Pittsburgh doctor ordered indicated continued high protein levels in my urine (no surprise there, that’s the nature of this disease), but there was some good news: my eGFR has improved to 42 (from the low 30s), and I was negative for the “JC virus,” the one that can be “activated” by the Rituxan and can potentially cause brain damage. So… I’ll take it! She told me she will repeat a lot of the blood work when I’m there on Wednesday.
This has absolutely nothing to do with anything, but I just have to mention a few words about this dog I’ve been fostering for nearly two months. Della is 80 pounds of terminal timidity! She came from a severe hoarding situation, so while I don’t believe she was abused, she just didn’t experience any positive connection to humans. She is very sweet and really wants to connect; she’s just so scared. She is making progress, no doubt. When we go for walks now she holds her head and tail up and trots, which is a far cry from before. But it is just very slow, and she is on her own schedule. Luckily I’m in no rush. She can take whatever time she needs. I would definitely like to adopt her but we have a 16-year-old dog who can be a bit of a brat when it comes to new dogs stealing the attention that he feels he deserves all of. (At his age, he’s probably right.) At present, it’s not a problem, as Arrow the oldster stays with Kyle, and Della stays with me. Della has met both Arrow and Zeke the Husky, and so far so good, in short increments. We’ll see how that all plays out. Right now while I’m out of town, she’s staying with foster-grandma, who will surely lavish attention on her.
Hemoglobin: 9.4
Protein in the urine: 5568
Low, Low, Low 