Tuesday Adventures
TL;DR: Dermatologist won't give me biologic shot cause immune suppressant; won't give me previous med cause 'increased likelyhood of upper respiratory illness'. I'm stuck back to topical for psoriasis. Paindoc office had fire alarm, doc told me to go home, called me later for consult, couldn't give me longer scrips due to regulations. Whee. Extra painmeds due to stairs during fire alarm, extra sleep today.
I meant to post this on Tuesday, and got distracted.
So over the course of last weekend, my sleep cycle shifted around to have me waking up around 6am. I've been waking alert and feling ok, so after about a half hour or so of futzing on my phone to make sure I'm awake and not about to fall back *thud* asleep, I wander into my hobby room to Do Stuff(tm). My desire is to clear all the games and dice taht I've had come in from kickstarter and various other purchasing from it. This means I need to open the packages, make sure everything is in them, enter them into my list, currently a goog spreadsheet, and then put them away, for whatever value of away is useful. I want to clear my table enough to get my painting stuff out again, cause among the things I have being delivered are miniatures that I liked enough to buy. The games usually include extras and/or expansions, which I want to try to combine into one box for space efficiency and convenience. When it's dice, I make labels for each set, with the name, where I got it from, and how much I paid.
So, in the past few days, I've managed to collect about 6 games, label two large collections of dice, eat morning food every day, and stay off the computer doing diddly shit for about 8 hours during this time. (I'm on my tablet looking up pictures of dice and entering stuff in the spreadsheets, and I've done a little bit of pulling up music using the Rythm bot on discord to have something to listen to while I do it, to keep myself content. It simultaneously feels like busywork, and like I'm taking care of my growing collection. It's frustrating.)
Monday, while I was doing that, I got a few phone calls that I didn't notice cause my phone was in my bedroom, charging, and I had music playing. They were from the two doctors I was going to visit on Tuesday: the pain management doc didn't leave a message; the dermatologist asked me to call before I came in. And so, having found myself awake at 6am, I proceeded to try to do stuff until after 9am when I could call doc offices. (I had written 'successfully woken up', but that makes it sound like it was something I set out to do, and actually did, when the reality is that I have no idea why I wake when I do or fall asleep when I do. It doesn't seem to bear much relation to how much I've done, whether I stair at computer/tablet/phone screens, or whether I've remembered/forgotten my meds. *sigh*) I think I went and found a couple of games that hadn't had their expacs combined, and did that. (I've been evaluating if I could fit things without actually punching the pieces out, as a good friend loves to punch games and I'd like to have games to punch when I visit. Which hasn't happened since New Years, and I'd been thinking of seeing if it could happen soon, and well.) I picked out the deli-sliced roast beef and cheese to eat (as opposed to leftovers) and realized that apparently it had been 5 days since it was bought, and well, it's probably ok to eat with that amount of rainbow sheen on it... I hate wasting food.
My first callback was paindoc, as that was a noon appointment. No option to talk to office staff, shunted to voicemail. Which sucks, cause this office has a record of not listening to their fucking voicemail. I left a message, expressing my displeasure - probably at greater length than strictly necessary. What was new is that they have started a service where they will text you a website to connect with to text them the request you're making, and they'll get back to you. Given their track record with voicemail, I expressed my dubiousness about it, especially mentioning that, as this was a short-term reply need, having to jump through these hoops was particularly annoying.
I then called the dermatologist office. Now, my dermatologist works in two offices. Usually I ended up calling the office she's not in that day, so I've just started calling one office and dealing with getting bounced around. Sometimes the bounce takes me to a person, sometimes it takes me back to the top level voice menu system. This time I got to go through the voice menu system three times, because it glitched. Yay? It turns out I didn't have an appointment with the doctor at all(1), not even a little, it was just supposed to be a 'nurse' visit (at the first office I called) to give me the second shot. The office staff said they'd get someone to call me back. I mentioned I'd be leaving the house at 11:15 to go to a different appointment, so please make it before then. I think I poked around and put some clothes away.
I can't recall who called back first. Paindoc's callback was a person, who had listened to the voicemail. Quel surprise'. She had no idea why someone had called me, expressed confusion over the lack of voicemail, and concluded that they were just trying to make sure I didn't have COVID19 symptoms. I don't, and said so, and we confirmed that the appointment was for noon. After I hung up, *then* I got the SMS text message offering me the connection to the texting site. (remember, I had had another long-winded phone conversation in between there.)
Eventually - around 10:30? - the dermatologist office called back. It seems that they are currently stopping all immune-suppressant prescriptions, due to the novel coronavirus. Makes sense. I asked to have my previous med, otezla, represcribed. The nurse sounded startled - why was that? So I did the whole song and dance again (why wasn't this noted in my chart?) about how I had stopped the otezla when I got the shot, and 3 weeks later the psoriasis was worse, and over more areas of my skin, and that - after double checking it wasn't a bad idea medically - I had put myself back on the otezla at half dose, both to make it last longer, and to leave some 'headroom' so I could notice if the shot was doing anything. Which it didn't seem to be. So could I please have the otezla back. And could this please happen *today*, because I have to order the stuff through the specialty mail order pharmacy that my insurance requires me to use, and so it will take at least 2 days to get it, and I only have like 2 pills left. The nurse took all the info, including severity and extent, and said she'd get back to me when the doctor got back to her. I mentioned that I had a diff doc appt at noon, at a doc not in the same system as most of my docs are, and that I might not answer the phone between 12:30 and 2, and to please leave a message.
I had to wake the Youngest around 10:45, as I went downstairs to be ready to leave; usually he's awake before me, or at least in a reasonable time. We were actually out the door at 11:15, and since he hadn't had a chance to have any food, we stopped at McDonalds (drive through) to grab things, and got back out on the road. During that time, the dermatology nurse called me back. Apparently, during the med trials, 11+% of people on otezla got upper respirator infections, vs 4+% on the placebo. So no, I can't have the otezla. They'll be happy to prescribe me all the topical ointments and cream I can stand, tho. I mentioned that the entire reason I was on the systemic meds was because the topical stuff had stopped working. Yes, but that's all they're willing to give me. *sigh*.
Despite stopping for food, we got to the paindoc office by noon, complete with dancing around using the elevator. (it's on the second floor of a bank building, which is it's own kind of special.) I sign in, and pay, and sit down for 5 minutes ish. As I'm walking back into the warren of exam rooms - at least 30-50 feet, which doesn't sound like a lot except for my hips/back/knees mobility issues - the fire alarm goes off. Everyone stands around looking 'well, do we leave?' and I turn around and go collect my Youngest, and head to the stairs. Fortunately we were able to park close, because I just went and sat in the car. I was not going to stand milling around in little 6foot apart clusters.
Eventually the doc found me, and told me they'd started doing telemedicine - he could call me up later. Especially as they had no idea how long it would take for the fire department to decide the building was clear. And so, with nothing else to do, we went home. 3 hours later, he called.
I spent the rest of the day on the first floor. I had meant to poke at my maybe-dead disk drive, but somehow I never quite managed to think of it while I was at the keyboard. I perused twitter, poked at WaPo, and generally just frittered the time away. I opened some boxes that were down there - one huge game, with large figurines and many expansions, another game's expansion, the latest Mercy Thompson book, a pretty tarot deck, and some pretty wooden decorative things to make playing Sagrada nicer.
When I came upstairs around 8pm I read the Mercy Thompson book, which took me through till about 2am, at which point I went to sleep. Around 5 am I woke with enough pain in my hips that I took one of my breakthrough meds, and then slept again till noon. All I did of use today was try to put the Sagrada things into the box - which didn't work as well as I thought it would, as the lid ended lifted about 3/8". Still, it's even and evenly braced, so hopefully nothing - neither inside pieces nor the box - will be damaged.
And I wrote this. It's now 11:30 pm. I'm not tired, and I have the hiccups. Yay?
(1) Back in December, when I got the first Stelara shot, I *thought* that I had made it clear I wanted to be able to evaluate with the doctor how it was working. Especially after I called them in early January and expressed that it *wasn't* working, and been told that I should wait for at least 2 shots (at 3 months apart) for it to reach effectiveness. So, basically, I would need to cope with untreated psoriasis either until it started working, or until they gave up.
This entry was originally posted at https://khatru.dreamwidth.org/17568.html. You can comment here, or there using OpenID. There are
comments there. Hopefully this is doing the right thing.
I meant to post this on Tuesday, and got distracted.
So over the course of last weekend, my sleep cycle shifted around to have me waking up around 6am. I've been waking alert and feling ok, so after about a half hour or so of futzing on my phone to make sure I'm awake and not about to fall back *thud* asleep, I wander into my hobby room to Do Stuff(tm). My desire is to clear all the games and dice taht I've had come in from kickstarter and various other purchasing from it. This means I need to open the packages, make sure everything is in them, enter them into my list, currently a goog spreadsheet, and then put them away, for whatever value of away is useful. I want to clear my table enough to get my painting stuff out again, cause among the things I have being delivered are miniatures that I liked enough to buy. The games usually include extras and/or expansions, which I want to try to combine into one box for space efficiency and convenience. When it's dice, I make labels for each set, with the name, where I got it from, and how much I paid.
So, in the past few days, I've managed to collect about 6 games, label two large collections of dice, eat morning food every day, and stay off the computer doing diddly shit for about 8 hours during this time. (I'm on my tablet looking up pictures of dice and entering stuff in the spreadsheets, and I've done a little bit of pulling up music using the Rythm bot on discord to have something to listen to while I do it, to keep myself content. It simultaneously feels like busywork, and like I'm taking care of my growing collection. It's frustrating.)
Monday, while I was doing that, I got a few phone calls that I didn't notice cause my phone was in my bedroom, charging, and I had music playing. They were from the two doctors I was going to visit on Tuesday: the pain management doc didn't leave a message; the dermatologist asked me to call before I came in. And so, having found myself awake at 6am, I proceeded to try to do stuff until after 9am when I could call doc offices. (I had written 'successfully woken up', but that makes it sound like it was something I set out to do, and actually did, when the reality is that I have no idea why I wake when I do or fall asleep when I do. It doesn't seem to bear much relation to how much I've done, whether I stair at computer/tablet/phone screens, or whether I've remembered/forgotten my meds. *sigh*) I think I went and found a couple of games that hadn't had their expacs combined, and did that. (I've been evaluating if I could fit things without actually punching the pieces out, as a good friend loves to punch games and I'd like to have games to punch when I visit. Which hasn't happened since New Years, and I'd been thinking of seeing if it could happen soon, and well.) I picked out the deli-sliced roast beef and cheese to eat (as opposed to leftovers) and realized that apparently it had been 5 days since it was bought, and well, it's probably ok to eat with that amount of rainbow sheen on it... I hate wasting food.
My first callback was paindoc, as that was a noon appointment. No option to talk to office staff, shunted to voicemail. Which sucks, cause this office has a record of not listening to their fucking voicemail. I left a message, expressing my displeasure - probably at greater length than strictly necessary. What was new is that they have started a service where they will text you a website to connect with to text them the request you're making, and they'll get back to you. Given their track record with voicemail, I expressed my dubiousness about it, especially mentioning that, as this was a short-term reply need, having to jump through these hoops was particularly annoying.
I then called the dermatologist office. Now, my dermatologist works in two offices. Usually I ended up calling the office she's not in that day, so I've just started calling one office and dealing with getting bounced around. Sometimes the bounce takes me to a person, sometimes it takes me back to the top level voice menu system. This time I got to go through the voice menu system three times, because it glitched. Yay? It turns out I didn't have an appointment with the doctor at all(1), not even a little, it was just supposed to be a 'nurse' visit (at the first office I called) to give me the second shot. The office staff said they'd get someone to call me back. I mentioned I'd be leaving the house at 11:15 to go to a different appointment, so please make it before then. I think I poked around and put some clothes away.
I can't recall who called back first. Paindoc's callback was a person, who had listened to the voicemail. Quel surprise'. She had no idea why someone had called me, expressed confusion over the lack of voicemail, and concluded that they were just trying to make sure I didn't have COVID19 symptoms. I don't, and said so, and we confirmed that the appointment was for noon. After I hung up, *then* I got the SMS text message offering me the connection to the texting site. (remember, I had had another long-winded phone conversation in between there.)
Eventually - around 10:30? - the dermatologist office called back. It seems that they are currently stopping all immune-suppressant prescriptions, due to the novel coronavirus. Makes sense. I asked to have my previous med, otezla, represcribed. The nurse sounded startled - why was that? So I did the whole song and dance again (why wasn't this noted in my chart?) about how I had stopped the otezla when I got the shot, and 3 weeks later the psoriasis was worse, and over more areas of my skin, and that - after double checking it wasn't a bad idea medically - I had put myself back on the otezla at half dose, both to make it last longer, and to leave some 'headroom' so I could notice if the shot was doing anything. Which it didn't seem to be. So could I please have the otezla back. And could this please happen *today*, because I have to order the stuff through the specialty mail order pharmacy that my insurance requires me to use, and so it will take at least 2 days to get it, and I only have like 2 pills left. The nurse took all the info, including severity and extent, and said she'd get back to me when the doctor got back to her. I mentioned that I had a diff doc appt at noon, at a doc not in the same system as most of my docs are, and that I might not answer the phone between 12:30 and 2, and to please leave a message.
I had to wake the Youngest around 10:45, as I went downstairs to be ready to leave; usually he's awake before me, or at least in a reasonable time. We were actually out the door at 11:15, and since he hadn't had a chance to have any food, we stopped at McDonalds (drive through) to grab things, and got back out on the road. During that time, the dermatology nurse called me back. Apparently, during the med trials, 11+% of people on otezla got upper respirator infections, vs 4+% on the placebo. So no, I can't have the otezla. They'll be happy to prescribe me all the topical ointments and cream I can stand, tho. I mentioned that the entire reason I was on the systemic meds was because the topical stuff had stopped working. Yes, but that's all they're willing to give me. *sigh*.
Despite stopping for food, we got to the paindoc office by noon, complete with dancing around using the elevator. (it's on the second floor of a bank building, which is it's own kind of special.) I sign in, and pay, and sit down for 5 minutes ish. As I'm walking back into the warren of exam rooms - at least 30-50 feet, which doesn't sound like a lot except for my hips/back/knees mobility issues - the fire alarm goes off. Everyone stands around looking 'well, do we leave?' and I turn around and go collect my Youngest, and head to the stairs. Fortunately we were able to park close, because I just went and sat in the car. I was not going to stand milling around in little 6foot apart clusters.
Eventually the doc found me, and told me they'd started doing telemedicine - he could call me up later. Especially as they had no idea how long it would take for the fire department to decide the building was clear. And so, with nothing else to do, we went home. 3 hours later, he called.
I spent the rest of the day on the first floor. I had meant to poke at my maybe-dead disk drive, but somehow I never quite managed to think of it while I was at the keyboard. I perused twitter, poked at WaPo, and generally just frittered the time away. I opened some boxes that were down there - one huge game, with large figurines and many expansions, another game's expansion, the latest Mercy Thompson book, a pretty tarot deck, and some pretty wooden decorative things to make playing Sagrada nicer.
When I came upstairs around 8pm I read the Mercy Thompson book, which took me through till about 2am, at which point I went to sleep. Around 5 am I woke with enough pain in my hips that I took one of my breakthrough meds, and then slept again till noon. All I did of use today was try to put the Sagrada things into the box - which didn't work as well as I thought it would, as the lid ended lifted about 3/8". Still, it's even and evenly braced, so hopefully nothing - neither inside pieces nor the box - will be damaged.
And I wrote this. It's now 11:30 pm. I'm not tired, and I have the hiccups. Yay?
(1) Back in December, when I got the first Stelara shot, I *thought* that I had made it clear I wanted to be able to evaluate with the doctor how it was working. Especially after I called them in early January and expressed that it *wasn't* working, and been told that I should wait for at least 2 shots (at 3 months apart) for it to reach effectiveness. So, basically, I would need to cope with untreated psoriasis either until it started working, or until they gave up.
This entry was originally posted at https://khatru.dreamwidth.org/17568.html. You can comment here, or there using OpenID. There are
comments there. Hopefully this is doing the right thing.