#and I don't see a pulmonologist anymore

[neonphoenix]

I'm so goddamn tired.

[hooks-and-chains]

Tomorrow I have my first appointment with a pulmonologist. New doctors are like Schrodinger's gaslighter. Until I show up, the doctor is simultaneously taking me seriously and telling me I'm not as sick as I say I am. I hope whoever I see is reasonable because I don't think I have it in me to be civil to people taking my money and then telling me I'm lazy anymore. I ain't got it in me.

[jodilin65]

First, my Temu package arrived. The auspicious incense is much smaller than I thought it would be. I'm not sure I really like it much anyway.

The cleaning sheets are great for the toilets. It's amazing how these flimsy little sheets dissolve instantly and become so soapy once you swish them around with the toilet brush. I haven't used them on the floors or the shower stall yet.

I'll be setting up a “sleep” group so two Alexa devices can play sounds in different parts of the bedroom, hopefully letting me sleep through the mower tomorrow. If they use the loud one again, though, I doubt it’ll do me much good since it runs around two sides of the bedroom and isn’t across the street. Sound permeates manufactured homes so easily! It bleeds through every inch of the windows, walls, ceilings, and floors.

It wasn't overly humid today, but it was still hot.

My pulmonologist appointment went better than I thought it would…I think. We didn't have to wait too long, but damn, did I have a ton of paperwork to go through. I had to answer the same questions multiple times. Even the doctor asked me the same things. The waiting room sucked; the TV was blasting, and the office was close to a busy street. Some of the traffic noise was a bit annoying as well.

The doctor's accent was also a little annoying, but I think I’m getting better at understanding foreign accents. I don't have much choice when every other person isn’t from here anymore—or so it seems.

We discussed both of my sleep disorders, and he asked questions about when they were diagnosed, how they were diagnosed, etc.

Help with the N24 is hopeless, as I figured. But if I can get my energy back, it won’t matter as much. Yes, it will still be a pain in the ass, but I do enjoy the quiet and having some alone time since I like a mix of time with him and time alone. He mostly asked about my sleeping habits, then he looked in my nose and mouth. He said I definitely had sleep apnea from the looks of it, and that home tests often underestimate the severity of it. He also noticed the collapsed septum and agreed I have quite a bit of congestion in my nose.

Turns out I was wrong to cut back on the nasal spray. In addition to restarting that, he recommended a better nasal dilator than the one I’ve got and gave me a sample of a nasal rinse to help clear out my nose.

He also gave me a sleep diary to complete over the next couple of months before I see him again. The diary is to record when I get into bed, when I fall asleep, when I get up, if I’ve had any alcohol or medication, how long I slept, my level of fatigue, and if I napped.

He said one to two hours before bed, I should avoid computers, and three or four hours before bed, avoid alcohol and exercise.

Now here’s where it gets interesting. I told him I couldn’t tolerate the CPAP and asked about a mouthguard. Because of my nasal issues, mostly caused by allergies, he doesn’t think I would benefit from a mouthguard. Therefore, he’s sending me to see an ENT to see about qualifying for the Inspire, which I would love to have as an option. I mean, I would prefer not to have any problems at all, but if I’ve got to have this and something to remedy it, that would be my first choice.

The only negative is that this doctor is part of the ENT group I hate. Another negative is that we would have to go all the way to Clearwater. As usual, it would be multiple trips. I don’t have a problem with making a day of it, as it’s good to get out, but it means dealing with the stress of finding available and working chargers, even though he’s got a service that would tow us if we were to run out of juice. The assholes also got rid of most of the fast chargers, so it would be slow chargers only.

The doctor he referred me to would knock me out, much like I was for the endoscopy, to see how my throat functioned while I slept, which would be way better than having to do an out-of-home sleep study. Propofol is great, LOL.

Anyway, I’m overwhelmed but hopeful.

The redneck’s mutt is getting annoying again. Two barking fits today, one lasting more than just a few barks.

[alopiassupersillyosus]

PSA To all of my asthmatic friends and people with difficulty breathing - if you're using a spacer/chamber with your inhaler, it's most likely not supposed to "sing."

My mom and I both use the Respironics OptiChamber, and I was lucky enough that my childhood pulmonologist taught me how to use it. You press your inhaler, and you breathe in slowly through the chamber. If it's singing/whistling you're doing it wrong.

My mother did not know this. She has been having difficulty breathing recently, and has been taking quick puffs with the chamber. (I didn't know this, as I don't live with my parents anymore) I heard what sounded like a harmonica, and my dad recognized the sound as "your mother's taking her inhaler".

I immediately checked it out and asked her to show me what she was doing, and helped show her how I was taught to use it. She said no one taught her, and she can't really see the directions on the side without her glasses. (The directions have a small music note with a slash through it to imply "no sound")

Considering she didn't know this, I just wanted to take a minute to tell y'all.

This is a comprehensive video, but you can also skip to the two breathing techniques in the middle:

https://youtu.be/o0M1lLpOu4U?si=zUgw3uajlXcwiOa

[medicinemane]

Ok... I'm gonna talk about my mom and what's up with her and why she's being impossible to live with right now, and it's probably gonna take a while so... putting it below a break

She gets home yesterday after seeing the pulmonologist and says "well, I can't eat normal food anymore"

And I'm going... ok... and that's because...? (Cause like does she have some allergy that's just in everything or something?

No, she went to discuss her sleep study and she found out her 02 levels are tanking every night, and the doctor basically said "well there's nothing wrong with your lungs, so it's because you're fat"

(I think this is bad medicine, but I won't be able to say this for like an hour)

Anyway, now her plan is shes just going to eat a single can of fruit a day

(Also keep in mind that as I'm doing all this, I haven't eaten at all that day, and it's like 4pm, so I really really really need some of that costco pizza before I can think, but no, I'm trapped there with her)

She's just super sulking and not at all willing to listen to the fact that while I sympathize with why she's upset, this isn't like... a productive course of action. Eventually I'm trying to leave because I've got a hot plate in my hand that's burning me cause it's been microwaved and is just real hot, and she's still talking to me while I'm switching it from knee to knee

Well finally after I've eaten I've come back down and she's in a better mood, and we talk and I point out that like my gramps was a skinny man but needed a cpap machine, and that I don't think being fat really has much to do with it or should be a prerequisite for getting important care

I point out that she's been getting stronger and had more stamina since she moved out here and started doing yoga, and that I think that's a better goal than weightloss

I talk about how really if we could find one she ought to have a patient advocate. Like as much as she's pissing me off I'm on her side here

I tell her the self advocacy phrases of "what would you do for a thin person presenting these same symptoms?" "why don't we do that then?" and if they don't agree to do it "I want it noted on my chart that you're not doing those tests/that treatment"

By the time we're done she's in a relatively good mood. I'm not, but she is (I'll get to that at the end)

Today I talk to her and she's sulking, and now she's only going to have a single sandwich a day. You know, fuck everything we discussed yesterday, it's back to the sabotage

Then she goes to the mechanic, she gets back and it turns out she got there late (cause she fucking has always sucked with time, I... I spent a half hour just sitting there most days after school waiting for her, one time literally 3 hours cause she... anyway... yeah... she does show up late even though she's better these days)

Well, they couldn't get her in, so now she's a stupid evil worthless monster

Now here's the two problems. See, I wouldn't mind so much if like... one of you was down, but with her, her I mind a lot

First of all, she constantly lashes out when she's like this. She gets snippy, or she gets... she pretty much... well I mean fuck, do you get how her diabetic ass refusing to eat basically places me in the same position as someone threatening to kill themself in front of me if I don't deal with it and fix them?

But she really does lash out a lot and get short with me and it's like... fuck you... I'm one of the few people actually nice to you and on your side all the time despite everything you've done to me... why are you so mean to me? Why am I your emotional punching bag when you're down?

But the other thing to understand is there's so much shit that happened in the past... like I was literally having to do this same stuff when I was like 5... fuck... fuck, that's literally it... isn't it?

That's the real reason it bothers me this much, it's cause it's fucking identical to how it was when I was little, and that messed me up so bad, and it forces me back into that

I knew that was why her night terrors or her sneezing fits make me bash my head with the heels of my hands; just so fucking overwhelming I lose control because they bring back such horrible feelings but... yeah... that's a lot of it

But also it's just I can't be close to her, it hurts me to be close to her

In addition to making me be her parent she said stuff like how I'm a loser that no one could ever love (when I was like 12), did a bunch of other shit that skeeves me out... just... I do not want to be in anyway emotionally touching her with a 20 ft pole

I feel bad for her, but I just fucking can't be the one to deal with this cause she messed things up to bad in the past, but... tough shit for me, gotta try to keep things functioning so... so things don't get even harder

But like... the way she was when I went down and she's sulking and saying she'll make dinner but she's not having any rice, it brings up a memory so bad I can't even fucking focus on it enough to tell you what happened with it, and I know enough to know I'm glad I can't cause it would mess me up

bad bad bad abdabd a abdadbaa bdadb adbda sadsbljk fadsl khawsfe y

kill me

[mandelene]

Okay long time reader first time asker this isn’t a prompt per se, but I was thinking recently about your asthma/allergy-ridden portrayal of Matthew, and I was curious if in your human AU Matt has ever done immunotherapy (allergy shots).

My asthma is very mild (triggered by exercise/cold weather, both fairly mild reactions treated with albuterol) but my allergies are off the charts. I did 6 months of immunotherapy with 3 different shots every week (progressing at half doses instead of full doses because I’d had some minor systemic reactions early on.) About halfway through the treatment plan, my whole body broke out in hives and my throat began swelling, and I needed an epipen and steroids. I kept my poor allergist at the office an hour after closing so she could keep me in observation 😅. I was then forbidden from continuing immunotherapy. As it turns out, there aren’t a ton of options for severe allergy sufferers who can’t tolerate immunotherapy, except for lifelong medicating, but most allergy medications become less effective over time. My doctors are still trying to figure out the right course for me.

All that to say, as someone who also has immune problems and does such a good job at portraying medical things in your fics, I’m curious if you or your characters have ever run into the medical equivalent of “Welp. The gold standard treatment for this thing failed. ….now what??”

Hello, thank you so much for the ask and for being a longtime reader! That's so awesome! 💖

First off, I'm so sorry you had to go through that scary experience with allergy shots! I've considered writing about them before but never committed to it because I always worry that readers wouldn't find it very interesting and because I already project a lot of my problems on asthmatic Matthew as is. 😅 It's definitely something I could write about though if that's something you guys would like to see.

I've definitely had treatments fail me. If it makes you feel any better, I went through 6 years of immunotherapy and it did almost nothing for me. 😂 I started when I was 10. I had a bad reaction within the first year of treatment, so I stopped getting them from the allergist I'd been seeing. Then, when I was 13 and doing really poorly in terms of my asthma, my current pulmonologist (who is also an allergist) wanted me to try again, so then I went through 5 years of shots with him. The shots eased some of my allergies (like my allergies to cats and dogs) but most of my environmental allergies are just as bad if not worse than they've always been. My total IgE is still through the roof.

That was definitely a "this thing has failed me" moment.

As for asthma treatments, I've tried a lot of preventer medications to manage my symptoms: Advair, Flovent, QVAR, Pulmicort Flexhaler, Symbicort, Dulera, Singulair, Alvesco, and more that I can't remember anymore. Some did nothing for me. Others helped but then out of nowhere my asthma would get out of control again. Since childhood, my asthma has been very unpredictable. I'll be totally fine one day and then crash the next day. My allergies or a virus will set me off and then I get trapped in really long asthma flare-ups that can last up to three weeks and don't get better with albuterol/other standard rescue meds.

Since my doctor put me on Dupixent in the summer of 2020, I've been doing better. I thought having to give myself injections every two weeks would be hard for me and I was definitely nervous at first, but now it's easy.

I still struggle with my allergies. Even while on Dupixent (which I'm taking as an asthma med but can also help with allergies), although I don't break out into hives as often anymore, I still get nasal symptoms and I'm chronically congested. I should be using my steroid nasal spray twice a day, but I don't, so that's on me lol. As you said, antihistamines can get less effective the more you use them, so my doctor has me switch what I'm taking every few months.

Thankfully, there are always new treatments coming out, so I hope you'll eventually find something that works for you. Hang in there! 💪

[altheterrible]

I have a doctor's appointment and I have a long list of concerns I need to address.

1. I need the dose increased on my beta blocker, my ACE inhibitor, and my statin. Being middle aged and having stage 3 kidney failure is catching up with my circulatory system, and my heart rate doesn't go below 100 anymore. My blood pressure has been elevated the last few times I've had it checked as well. As for the statin, per heart disease guidelines I should be on a high intensity statin regimen.

2. I want to ask about initiating pioglitazone. It’s an antidiabetic medication that decreases insulin resistance and improves glucose metabolism in muscle cells. Victoza has been helping my blood sugar a lot, but it also affects my mood. I thought I was just imagining it until I did some research and found that depression and insomnia are reported side effects. I've taken pioglitazone previously and it was decently effective, so hopefully if I can start it, I can use less insulin. This is something I should probably talk to my Endo about, but I'm not seeing her for several weeks

3. I need a referral to a pulmonologist so I can get new pulmonary function tests and see what options I have for increasing my endurance. I'm thinking pulmonary rehab might be useful?

4. I need a referral to a sleep doctor for a new sleep test so I can get more effective CPAP settings, also to see if I have a sleep disorder other than ADHD lmao. I'd be interested in trying modafinil if I get my CPAP adjusted and I'm still not feeling rested.

5. I need a referral to an allergy doctor so I can figure out if I have MCAS or something else, I just need to get these random allergic reactions under control because it's nerve wracking never knowing what's going to trigger anaphylaxis

6. I probably need a referral to a nephrologist? I’m juuuuust at the point where my meds might need to be adjusted for renal function

7. I would love it if I could get a higher dose of gabapentin. I'm on 600 mg BID. Dosing maxes out at something like 5000 mg/day so there's room to go up, and right now it’s helping the burning and tingling in my hands and feet so I feel like a higher dose would help more. However, it's a controlled substance in my state and even though it's a C5 the fact it’s controlled means doctor’s don't want to prescribe it.

8. I need to ask about insomnia meds. My psych took me off all insomnia meds bc trazodone doesn't work and makes me sick, and doxepin doesn't work, so she decided I just don't need sleep I guess. I've had some success in the past with clonazepam and temazepam, but again, they’re controlled, specifically C4s, so there's the reluctance to prescribe. Also long term constant used of benzos for sleep isn't actually effective for me anyway. I'm interested in trying low dose (5mg) Ambien, and that's a C5, so that might go over better. Gabapentin helps me STAY asleep, but I can’t GET TO SLEEP.

Also, doctors have been telling me since 2012 that the reason I feel so tired and shitty is because my blood sugar is out of control. Maybe now that my numbers are improving (estimated A1c less than 8, baby!) we can consider other causes. I think I have "just got a janky body" disease.