If I’m not writing a lot lately.


I’m not supposed to be awake right now but I’m having trouble sitting still, or sleeping, or anything, because I’ve been given Prednisone and Decatron and my mind is not working right.

I’ve been in an asthma crisis for a couple days now. Two trips to the emergency room. The first time we got good people. The second time we got awful people. (As in, people who didn’t know some very basic information about how asthma works, but who were determined not to show it. My mother — who was a respiratory therapist — told us later that this is what some medical professionals do when they don’t want to admit not knowing something, is they pile on the arrogance and condescension and bullshit and hope that substitutes for knowledge. Of course, when I suggested that even a non-doctor such as a respiratory therapist would be a better thing than the doctor I had, the nurse pretty much claimed that respiratory therapists only get two years of education, after which I pointed out that that’s two years of formal education and often decades of constant working with lungs and only lungs, both of which are more than most doctors get.) We had to get a second doctor in there to even get someone who had a clue that for the situation I was in I needed a steroid and not yet another bronchodilator.

I probably should be in a hospital until this is over, but what happened tonight was roughly the following: After already having taken two doses of Prednisone since starting Prednisone treatment, I started making a really scary noise (that I can’t really describe, but that is really awful) that Laura said sounded like my airway was closing. I took more Albuterol than is technically advisable, in order to get me well enough to go to the ER in something other than an ambulance. When I got there, I of course sounded great with all that Albuterol in my system, and they decided there wasn’t actually a problem. (What I wanted was to be kept until the Prednisone actually took a longer-term effect and got me stabilized enough so that I wouldn’t be bouncing in and out of the ER all the time.) Actually they didn’t listen to a word we said pretty much, they sounded as if they were speaking off a script and nothing we said could make them deviate it, and certainly nothing actually in medical textbooks or anything would make them deviate from it. (He even pulled as far as I know a random number out of his ass to say how long Prednisone takes to work (after I said how long it took to work for me and how long it worked for), in order to insist that I wasn’t giving accurate information, and then the second doctor told me (without hearing this) the exact amount of time it takes to work usually, which was the time I’d said in the first place. He was utterly confused when I repeated the first doctor’s numbers at him.)

(They didn’t seem to get that given that I don’t encounter many asthma triggers in a sterile hospital environment, I wasn’t going to go into a nasty asthma attack on the spot, whereas at home there are many triggers, etc. Actually, they didn’t seem to get much of anything, it was an astounding case of practically an entire ER having an attitude problem — like they were nasty to us from the moment we got there for no apparent reason.)

The second doctor had more of a clue and gave me a longer-acting steroid and sent me home.

And of course I started having more asthma attacks the moment I hit the cold air outside.

So I’m back home and the next trick is keeping me breathing well until I can call my real doctor in a couple hours and see if I can get something more productive going on.

But these steroids are messing with my sleep so much (even if they’re keeping me breathing) that I’m not sure I’m going to be coherent by the time I get to talking to a doctor. I’m already at a scary level of sleep deprivation and I’m not showing any sign of sleeping. And I can feel bits of my mind just not working while other bits are going high-speed. I am afraid that by the time I get to a doctor I will be unable to type anything. (And that the sleep I am losing will not help, but I can’t figure out how to sleep nonetheless.)

The good thing is that my mother, who did do the two years of formal education then decades of experience with lungs (unlike the doctor, nurse, or triage nurse there, all of whom rely on such unreliable things as pulse oximeters), told me all kinds of things to do, that none of these doctors would have even come close to knowing. Things even like what position of my arms and torso will ease my chest muscles the most while sleeping so that I can breathe with minimal effort (my breathing has just stopped several times recently while I was trying to fall asleep), and just all kinds of details as to how to get through the night tonight, as well as some good guesses as to exactly which parts of my lungs are screwed up. Contrast this to a doctor who had never even heard of the paradoxical effects Albuterol could sometimes cause (and seemed to believe that by bringing up the possiblity, Laura was doing something more like suggesting that goats were flying out of his ears), let alone even begin to think he should figure out whether this or something else was what was happening to me (since my breathing seems to get worse in some respects after I use the inhaler, and it could either be because the inhaler’s working or because the inhaler’s doing something really dangerous, and it’s kind of useful to figure things like that out). I’ll take the “not trained enough” RT any day.

And also, if I seem to not be myself lately, Prednisone is really screwing with my head.

(Also a person wrote to me about a very serious problem going on with their child’s school. I’ve been trying to figure out how and when to reply for a long time and never did. I think right now it’s safe to say I’m not going to be able to, and I hope you’ve found someone more equipped to answer, and I’m really sorry about that.)


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died in 2014 and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

16 responses »

  1. The main priority is that you get better. I know you are having trouble sleeping, so don’t try and sleep, but do try and rest as much as you can. Don’t worry about this blog, your writings are great but it’s more important that you take some time to recover from your asthma.
    Hope you have better breathing soon :)

  2. I went to an ER not long ago and because I was up on my legs, and it was busy and I was low on triage (no arterial blood gushing), I ended up staying there a whole night but finally making it into a surgery quarter. I was told that night-time is a horrible time to go. I have to wait behind all the partiers and gangsters and other more dominant personalities who seem to be able to bustle their way forward with less issues than me by ‘strength of their character’ instead of direness of their condition. ERs are really circuses that I think just barely have a semblance of doing at least triage correctly. Those that come in off an ambulance do get quicker service too I might add. A totally different entrance and process.

    I take Proventil, the best thing I know for myself. The steroidals work well long term for me. It is scary. I missed you both on SL yesterday. It seems even phlebotomists in my area can barely understand why it *isn’t* a good idea to fish for my veins. They do (I never did) it all the time on me and it pisses me off. I have to say “NO FISHING!” when I sit down at the tourniquet table.

  3. I’ve arrived both on my own and in ambulances. While I get seen faster coming in ambulances, I haven’t seen any increase in the actual quality of the care I got. (Except for at one point noting that the EMTs diagnosed me better than the doctor did — if I’d followed the doctor’s advice in fact I might not have survived.)

  4. I’m sorry you had to deal with people who didn’t know what they were doing in the ER.

    I had to take my husband to the ER 3 nights before Christmas. The triage seemed reasonable (the guy who’s not actively barfing right now can probably wait a bit longer, let’s see the 9-week-old baby who came in just before him first). Unlike the usual weekend ER problems I hear about in the city, we seemed to have sick kids, and one little girl who managed to pull a stocking-hanger off the mantel onto her head. (So I refrained from hanging stockings until Christmas Eve and they came down fairly quickly on Christmas morning, and got packed away before anything else.)

    So, we had a decent ER experience (that particular hospital hasn’t been bad to us, at least — the worst was trying to get the chest X-ray of the 6-month-old around midnight on a Saturday, and the radiologist finally got it well enough), and I’m very sorry you didn’t. And that a lot of people seem not to. :(

  5. ER is well familiar with me I think. though I have never been for an asthma attack yet as fortunately my asthma seems largely in abeyance which is just as well because the asthma inhaler is something to avoid so far as my heart arrhythmias are concerned.

    I think personally that it was salbutamol that contributed to the hastening of my mums ultimate death, I could see what it was doing to her heart rate, yet a nurse insisted on her being nebulised at the appropriate interval, when it was clear it was not helping.

    I only obtained the notes however, on a proviso that I would not sue.
    Technically that should make no difference, but being pragmatic, I realised that the notes were likely to “dissapear” if I had not made that promise. Anyway there was not any point in being vindictive so far as the hospital was concerned, shit happens.

  6. Yeah — laurentius — it was salbutamol or something like that that they were trying to push on me and that we were refusing, because I’d already just pushed my heart (I’m prone to tachycardia already) to as far as I was willing to push it with Albuterol. I’m glad I refused it.

    Having just come out of a Prednisone-induced delirium that passed as sleep, though, I’m going to be really glad when I’m off this stuff too.

  7. Sorry about that. Good luck with everything. And don’t worry about the blog until you feel up for it; it’s interesting, but less important than your health.

  8. I have a high respect for EMTs too. ;) (Oh, btw, I have EMT-B badge somewhere here still. Was an automatic for the med training I got.) I’ve seen EMTs save much more lives than doctors have. Doctors can get “analysis paralysis” sometimes. The series “House” is one series too that kinda shows some of that albeit, Dr. House doesn’t get quite so much “paralysis” as he’s pretty smart/genius etc.(on the show that is)

  9. Hey, I know you will get thru this. It is (forgive me) a *bitch* that we have to learn all this stuff ourselves and then when we try to advocate for ourselves we get a WTF reaction or worse from the MD. At a recent appointment with an allergist, I expressed that I’d prefer not to have to take any meds, even my albuterol, mentioning the “paradoxical bronchospasm” thingie you said but not by name but by symptom. Doc said “oh that’s so rare”. Ugh, so’s a lotta things.

    My (well I guess gonna type sympathy but I guess it’s empathy) thoughts are with you Amanda. I’ve never had what I’d call an asthma attack, though I spent about 7 years on a daily inhaled med like Pulmicort. Got off of that 3 months ago and have been having a heck of a time lately mornings/nights. It’s allergy related. I believe this loratadine stuff might do it for me. I was taking albuterol 2-3 times a day for days and even I know that’s not good.

    Good for you for knowing what to do for yourself, though it has to be exhausting.

    It need not go without saying that doctors a a-holes sometimes. Makes no sense that you should be educating them and they go home with the quarter mil a year salary. I don’t understand how MDs, some of them, have the *nerve* to bill after showing their lack of knowledge.

    As someone who has been making funky inhale/exhale noises myself lately, I wish you a speedy recovery and all the rest you need. Take care of yourself.

  10. I have been ill almost continuously since just before Thanksgiving, and it evolved into bronchitis around Dec. 12. I am still ill, given it typically lasts three to six weeks, so I may be better in a few days or a few more weeks (I just can’t tell right now). I could say I know how you feel but, honestly, I couldn’t. I haven’t suffered from something like this since (from what Grandpa once told me) the age of four (over 30 years now) and had no idea what a bronchial spasm felt like. I can’t know what it’s like because my condition is acute (even if it feels like forever) and not chronic (like typical asthma, or chronic bronchitis which is usually indicative of some lung damage from smoking or whatnot). I may have AS and not be a great listener, but I also know what it is like to face paternalistic hypocrites.

    Just take good care of yourself. I want to read more of your blogs. You can blame Phil Schwartz for putting me onto you. ;-)

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