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Oct. 25th, 2019 10:16 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckSo the cold turned into bronchitis. There was some risk that I had pertussis as it's around in the schools right now. My having gotten exposed in the middle of September's run of prednisone was entirely likely as I accompanied Cordelia to her physical and could easily have picked it up in the waiting room.
We ended up going to urgent care last week for the cough. The clinician there took a sample for the pertussis culture and then freaked out because me having antibiotic allergies meant that her check list of things to do didn't work. She had no idea what to do. She gave me more prednisone, this time at a much higher dose, but kept asking if I was really sure I was allergic to Augmentin and Zithromax because her checklist said she needed to give me prophylactic antibiotics while we waited the week it would take to the culture results.
The second run of prednisone made me feel much worse which was terrifying. I felt like I was never going to feel any better because each dose was worse. Fortunately, I started feeling noticeably better once I finished the five days. Pretty immediately so. I ended up seeing a doctor at UHS that same day, though. There's not much to do at this point but to rest and hope to feel better quickly.
I haven't been able to use my c-pap in a couple of weeks because it makes me choke and cough. I had a few nights when I was afraid to fall asleep. I breathed much better when lying flat on my back, but I wasn't breathing strongly and worried about sleep making that slower/weaker. I cut my sleeping medications entirely for a while and then went to 25% of my normal dose.
My current plan is to try the c-pap tonight and see how it goes. Scott's not working tomorrow, so if it doesn't work, he'll still be able to get a reasonable night of sleep. I'd probably have tried it a night or two ago, but he worked Wednesday through Friday.
I had a couple of appointments about my hands during the last week. They were probably the most utter waste of time in terms of medical appointments that I have ever had. Basically, everyone wants to refer me to someone else, and none of them are willing to talk to me about things like causes, likelihood of (and speed of) further deterioration, and what the hell I do when I'm at home alone for a dozen hours at a time and can't so much as pull down my pants to use the toilet without assistance.
The first guy, at orthopedics, did cortisone injections in both hands again and referred me to a different department. Scott and I went to orthopedics on the same day that I went to urgent care for the cough. I arranged the appointment so that Scott could be there. I also told him that I needed him to talk. He said not a single word during the appointment.
I'm cranky about that. I postponed the appointment more than once because he couldn't be there. I also explained why and what I wanted from him. I don't know. I don't think he's coping any better than I am with all of the things in our lives that are falling to bits.
I saw the second doctor yesterday. He failed to listen to me and referred me to PT in spite of the fact that I have been told repeatedly that neither PT nor OT can do anything at all for my hands. There aren't any meds I can take, either. Possibly, there's nothing at all that can be done, but someone needs to sit down and tell me that.
Without having it in writing, solidly documented, I can't even seek help from non-medical sources. We can't pay anyone as things stand. Scott has to keep working, so he can't be here. Him going back to the factory floor means that his hours are going to be unpredictable. He's 53. I'm not sure we'll be able to afford to have him retire at 65, but I'm also unconvinced that he'll physically be able to keep going that long.
Cordelia is sixteen. She could, in theory, help me with some things when she's not in school, but that would devour her whole life. I'm terrified of that for her. I'm afraid that we won't have other feasible options. I'm 52. I could end up with decades of being unable to use my hands. Cordelia's ability to go forward with her life is already wobbly. Her having to drag the weight of responsibility for my survival will remove possibility for doing anything else.
I want Cordelia to have scope to grow. I want her to be able to do things that give her joy and to be able to try new things.
I think I'm not going to sign up for Yuletide. I'm not 100% sure that I'll be able to prepare the scenarios I've committed to for UCon. I don't want to make any other promises at this point.
My LTD appeal is still in process. I need to proofread, edit, and sign a statement that my mother has drafted for me. I simply haven't been able to cope with it this month.
Scott's going to be working 2nd shift from the second week of November onward. He says it's temporary, but I'm worried that it won't be. Him working 3 p.m. to 11 p.m. will be incredibly awkward even short term, and it will mean that he and Cordelia don't see each other at all during the week. It will also mean that I'll need to sleep roughly 2 a.m. to noon and won't have any time when I can be noisy.
We ended up going to urgent care last week for the cough. The clinician there took a sample for the pertussis culture and then freaked out because me having antibiotic allergies meant that her check list of things to do didn't work. She had no idea what to do. She gave me more prednisone, this time at a much higher dose, but kept asking if I was really sure I was allergic to Augmentin and Zithromax because her checklist said she needed to give me prophylactic antibiotics while we waited the week it would take to the culture results.
The second run of prednisone made me feel much worse which was terrifying. I felt like I was never going to feel any better because each dose was worse. Fortunately, I started feeling noticeably better once I finished the five days. Pretty immediately so. I ended up seeing a doctor at UHS that same day, though. There's not much to do at this point but to rest and hope to feel better quickly.
I haven't been able to use my c-pap in a couple of weeks because it makes me choke and cough. I had a few nights when I was afraid to fall asleep. I breathed much better when lying flat on my back, but I wasn't breathing strongly and worried about sleep making that slower/weaker. I cut my sleeping medications entirely for a while and then went to 25% of my normal dose.
My current plan is to try the c-pap tonight and see how it goes. Scott's not working tomorrow, so if it doesn't work, he'll still be able to get a reasonable night of sleep. I'd probably have tried it a night or two ago, but he worked Wednesday through Friday.
I had a couple of appointments about my hands during the last week. They were probably the most utter waste of time in terms of medical appointments that I have ever had. Basically, everyone wants to refer me to someone else, and none of them are willing to talk to me about things like causes, likelihood of (and speed of) further deterioration, and what the hell I do when I'm at home alone for a dozen hours at a time and can't so much as pull down my pants to use the toilet without assistance.
The first guy, at orthopedics, did cortisone injections in both hands again and referred me to a different department. Scott and I went to orthopedics on the same day that I went to urgent care for the cough. I arranged the appointment so that Scott could be there. I also told him that I needed him to talk. He said not a single word during the appointment.
I'm cranky about that. I postponed the appointment more than once because he couldn't be there. I also explained why and what I wanted from him. I don't know. I don't think he's coping any better than I am with all of the things in our lives that are falling to bits.
I saw the second doctor yesterday. He failed to listen to me and referred me to PT in spite of the fact that I have been told repeatedly that neither PT nor OT can do anything at all for my hands. There aren't any meds I can take, either. Possibly, there's nothing at all that can be done, but someone needs to sit down and tell me that.
Without having it in writing, solidly documented, I can't even seek help from non-medical sources. We can't pay anyone as things stand. Scott has to keep working, so he can't be here. Him going back to the factory floor means that his hours are going to be unpredictable. He's 53. I'm not sure we'll be able to afford to have him retire at 65, but I'm also unconvinced that he'll physically be able to keep going that long.
Cordelia is sixteen. She could, in theory, help me with some things when she's not in school, but that would devour her whole life. I'm terrified of that for her. I'm afraid that we won't have other feasible options. I'm 52. I could end up with decades of being unable to use my hands. Cordelia's ability to go forward with her life is already wobbly. Her having to drag the weight of responsibility for my survival will remove possibility for doing anything else.
I want Cordelia to have scope to grow. I want her to be able to do things that give her joy and to be able to try new things.
I think I'm not going to sign up for Yuletide. I'm not 100% sure that I'll be able to prepare the scenarios I've committed to for UCon. I don't want to make any other promises at this point.
My LTD appeal is still in process. I need to proofread, edit, and sign a statement that my mother has drafted for me. I simply haven't been able to cope with it this month.
Scott's going to be working 2nd shift from the second week of November onward. He says it's temporary, but I'm worried that it won't be. Him working 3 p.m. to 11 p.m. will be incredibly awkward even short term, and it will mean that he and Cordelia don't see each other at all during the week. It will also mean that I'll need to sleep roughly 2 a.m. to noon and won't have any time when I can be noisy.
