I think I have big lungs or something. Well that and my peak flow went up 10% or more when I started working out more vigorously (weight lifting, etc.). So my peak flow is normally around 540 or higher now. I've actually had days when I was lifting a lot (more than my body weight) that I was hitting 560 as my norm. So for me, 10% just doesn't feel good and means I'm not getting the oxygen I need to feel good and function, but I won't be breathless. I'm sitting here thinking about it, and breathless with stairs for me is 15-20%. Breathless in the shower, 20%. Breathless walking on level ground is 25-30%. But other ladies here on the board seem to run 250 as their norm. So 10% down on that would be really tight, not as much wiggle room as I have. I think maybe 340 was average per the charts for my height and age when I looked. But when my lung function is healthy, I'm at 540-560. I really think the pulse oximeter is a wise move, because the tissues need oxygen, whether I'm panting or not.

Can I bring this up again? So you're saying not EVERYONE has that stress reaction when their breathing drops? That's useful. I had no clue. It's kinda dramatic on me, because I start pacing and get really intense. But that's a 25-30% thing, a danger level, not just 10%. Well I'm glad I wrote all this stuff out. I've already forgotten a lot of the things, but I've got the paper right here. Good strategies like that help me. I can try to call on a new doctor. I'm just not sure anyone else would be more warm fuzzy. The on-time and appts, no hassle policies, them calling in the scrips so stuff is at the right location and ready, that stuff all matters too. I wouldn't want to give up those features.

Hmm, I don't play games with the docs. At home, nobody notices, so it wouldn't matter. But at the docs, I'm kind of dramatic and let it all hang out. Like I went in with very dirty hair, flip flops and a fleece jacket, and I slumped. I didn't try to pretend I felt better than I did. I made sure they could see it. If I had washed my hair, sat up straight, dressed properly, etc., it wouldn't have been as obvious. Yes, I've had enough other appts that I've learned these people can't guess. Sometimes I've gone in with people (my dh, my mother), and they'll say things. Just showing up with that person says a lot, because it says you weren't well enough to drive. I wasn't this time either, but I didn't have anyone easily, sigh. I don't know why I don't take someone to appts. If I had the right person, it would be useful to me, hmm. So yeah, I find ways on that. Like I knew it would have been more decent had I showered, but I wanted it to be informative. I didn't feel up to showering, and a person who hasn't showered in 5 days kinda looks like they're sick, lol. Adding: I feel well enough today to shower and will go do that in a bit. Yes, I used to dissociate with pain. I did some work with a counselor so I can be more present and in the moment. It basically takes mindfulness and saying to face the pain instead of walking away from it and turning it off. It was sort of a Spock thing, a strength in a way, because I could turn it off. But it wasn't healthy or safe. So now, if I have pain, I burrow into it and do mindfulness and embrace it and try to feel it. It sounds perverse, but it stops that sort of disconnect. As an adult I was ready to do that. There are ways to do guided mindfulness with a child. I don't know that it's any more painful to burrow in and feel the pain than it is to dissociate. LIke if you said oh that's hurtful, let him dissociate, I'm no sure it's more. It's different, but it's informative and doesn't make it last any longer. The task still feels the way it feels and the neurological stress of the pain is still the same. It's just more that I was ready to say ok I want to feel life and not be disconnected from it. Like Jesus on the cross said I want to feel it, don't take it away. Whatever, that was a total rabbit trail. I don't know your ds. Some mindfulness other times might let you see if that's a place he could get to at some point cognitively. It's a safer place, if you're actually feeling it. It's hard to put words to pain. The interoception book has some though I don't necessarily use them. Sometimes focusing on the location is enough. You know, i'm not sure I've done a lot with mindfulness of my lungs. I had been working on mindfulness with my arteries/veins, with my blood. I've gotten to where sometimes I think I almost feel my blood coursing. It's interesting. The things that are underneath are harder. Things on the surface are easier, because you can do tapping exercises to feel them and then know what you're feeling, where you're feeling it. So tapping exercises with mindfulness are a way to improve that sensory/mind connection, but it's harder to for something underneath like lungs, lol.

Yes, I had data from my other times being sick and I thought maybe I was choosing not to eat. However this time I was eating noticeably small, abnormal amounts. It had been improving and we were tracking it (day 3 one egg, day 4 two eggs, day 5 three eggs), etc. and it seemed to be doing better. That's where bronchitis and pneumonia are tricky, because the process is brewing even as you THINK you're improving. You realize I ate 3 eggs and then the next day was coughing up blood and down again?? Actually it was turkey burgers. Day 6 I had improved and ate 2 4-oz turkey burgers (no bun) and green beans and quinoia. But still, I was eating more and then BOOM it crashed down. I don't know what to make of that. I need to figure out whether the turn point was, where I had symptoms that I wasn't catching that would have clued me to do something earlier. That's why I'm thinking I need to read some books on asthma. There was a definite turn point where my symptom went from improving to BOOM crashing down again, but something must have been happening earlier in that I could have caught. It's probably lung function or something, I don't know. Like you're saying, my extreme hypo-sensitivity makes certain things not a good gauge I'm going to be way better with numbers. The nurse at UC asked me for a number for pain, and I was thinking what pain? My neck hurt. I had hurt earlier in the week, and I felt the pressure in my lungs was mild. I said a 2. My usual line is I birthed an 11 pound baby at home, does that sound like someone to ask about pain, lol. I didn't say that. So no, I don't do well just waiting for it to be so glaringly whatever that I figure it out. Much better with numbers and flowcharts. That's why my first pneumonia was so bad a few years ago, because I didn't realize how sick I was. I walked in to UC and they asked me if I wanted a WHEELCHAIR. I looked that bad. And I'm like no... I think they did finally put me in one, lol. And thing is, I TOLD the doctor this stuff. I think he just has no way to fathom it. He's young, really young, like probably only in his first few years out of med school. The appts too in-out to be conducive to sorting this stuff out. I like how efficient the office is and that he doesn't bother me. However for warm fuzzies, slowing down, digging in on how you feel, this ain't it, lol. I had looked for a nurse practitioner doing asthma at one point. I even think I found one. I had a lead from someone in the church as well. I could quietly make some calls I guess. If the new practice had a 24 on-call doc, that would be a reason to change, as long as they run their appts on time. I'm disappointed that a hospital office doc didn't have on-call docs even though it was in the system. Gave me no help whatsoever when I really needed some help. I'm just not sure any of these specialists are warm fuzzy. If you want and odd twist, I'm actually really sensitive on my breathing function. I don't know why. Maybe because I have data and trained myself with the peak flow meter and all my readings? I'm really attuned to being 10% down and I catch that pretty well. It's this 20% drop that I don't have experience with to know how it feels, and the 30% I had nothing to compare it to, kwim? So it was this totally new feeling at that point, with nothing to relate it to. I know what 10% feels like. I've had the asthma so controlled, I didn't know what the 30% felt like. That I know of, I was only below 20% one time this past calendar year, and it was very fast/precipitous. (I woke up from a nap choking with coughing, must have gotten into some dust or something, and my breathing was unexpectedly going down.) I had the pacing with that, but I the symptoms beyond that I noticed were the pacing and adrenal surge from the stress. This with the bronchitis went lower and slower, so I wasn't making the connection. That's why I'm saying I probably need to use the pulse oximeter, because that can arbitrate more quickly and give me a routine and baselines. I can know ok when my oxygen is at this level, this is how my brain functions. That would be objective data for me to work with. Tying it to breathing leaves a lot of variables (whether you've been exercising, whether you're already congested, etc.). The oxygen levels would be more absolute, because obviously your brain always needs oxygen to function, irrespective of those other variables. So yes, it's the sensory making it harder. I had told the doc that two years ago, but he's young. I need to check, but I think my kids also had something in their genes about how they respond to inhalers. We're still waiting on my genetics results, so we'll see. It wasn't a not at all, but it was a decreased improvement. So there could be this assumption oh the person took their inhaler and then you don't get the normal/typical level of improvement. As a person of no experience, I wouldn't realize that. It would just be happening.

Well definitely the in the moment stress was, lol! Definitely. That's just a normal stress reaction to a situation your body is reading as dangerous. Other times when my breathing has dropped like that, my body has done that kind of stress. I start pacing and getting really intense and saying we need to go, blah blah. Then as my breathing goes back up that calms down. The kind of stress I was talking about was more long-term (1-3 months) stressful situations kind of stress, stress that involves lawyers and important stuff, kwim? Yeah, I'm really hoping the glutathione will make it easier for me to stay on the Arnuity when I need it. I can't work with the headaches either,kwim? Like it's both. My liver is really cantankerous. I used to have MCS (multiple chemical sensitivities). If I'm having headaches and can't think well to work with my son (who really needs people to be on their best because he has autism and doesn't have a lot of give and co-regulates), then I've ruined my quality of life and affected him. So it both has to work and keep me livable. But let's hope the glutathione takes care of it. More is coming Wednesday, so I just have to make it through till then. It seemed to be working earlier this week when I was pairing it with the Zyrtec. I probably just need to take more. I can also juice lemons to help with my liver, but they hurt my throat right now, sigh.

Boring morning update! Boring is good, lol. I was a little scared to go to bed last night, because I knew lying down or reclining was making it worse. I finally went to bed at 1 and woke up at 7. No coughing at that point but I realized my lungs were tight. I think my brain is screwy, because I was having this hyper-literal "you have something in your lungs and your lungs hurt" moment instead of saying GO TAKE YOUR READINGS, kwim? Anyways, no coughing till I did both inhalers. Reading was 440, which is down 10% from where I had been yesterday and a solid 20% from where I would normally, healthfully be. After the albuterol, my lungs opened up enough to start coughing and I had 4 coughs with blood. The first 3 were streaked with blood and the 4th was light pink (not quite to frothy) and had visible streaks. I feel tired and suboptimal. These numbers are down from the apprx. 7 coughs with blood yesterday and they're down in category from frothy pink to streaked, which is good. And the decrease in my lung function overnight was not as precipitous. I would say the 50mg of prednisone is working and protective. I probably would have been very unsafe had what was going on gotten WORSE. I'm glad y'all pushed me on the pulse oximeter. I think what I ought to do is make it a regular part of my morning routine and keep it at my bed. That way I'm not having to *guess* whether I should check my lungs or not. And maybe during safe seasons I could do it a little less often, but I think keeping it there as part of a morning routine would be safer for me. That way we get over the sensory junk, over wondering. It doesn't hurt, doesn't take more than 15 seconds. I'm pretty tired and now I'd be interested to know what my oxygen is. I'm visibly red in the face and groggy. I would think the numbers would show that. It will be interesting to see if it correlates to flow or to other things as well (what room of the house I'm in, whether I've been outside, whether I've exercised, etc.). Could be very informative. My nutritionist always had this huge thing about oxygen and how important it was for pituitary gland function, blah blah.

Oh I figured out what "let's not mess around" meant. She put me on 50mg of prednisone a day, lol. It's not for very long, but wow am I hungry! The coughing is dramatically better and my lungs seem calmer. She rotated my antibiotic so it's not something I've been taking. It needs twice a day (no big deal), so I did that. I'm winding down to go to bed. I think that 50mg of prednisone was definitely to make sure I'm waking up alive. I'll set my arnuity with my glasses so I don't forget. We'll just hope for the best. Hopefully I'll be fine. So yes, if anyone else ever reads this and has blood in their mucous, apparently docs REALLY don't like that.

Ok, this is smart. Asthma for Dummies might be my speed, lol. Any other good books on it? Books that specifically go into these flow charts and safety plans.

I don't know who I'd take. The irony is, I help other people with prethinking at their medical appoints and self-advocating, making lists, etc. I just don't seem to be very good at my own, lol. I think it's more that I'm not really an EXPERT at this yet. What I should do is read a book on asthma care standards. That would be really smart. Then I'd be a little more boned up. I really just have an information gap. I just hadn't thought of it. When you're having pneumonia every few months, you're spending a lot of time recovering and getting back to living and not a lot of time researching it.

Yeah, it's not a laughing matter, but you're right, lol. That's why I was open to going this morning, because I was having that sense that if I laid down with this, I was gonna be sinking in to the death march by Monday. I could tell. I didn't have that all week. I mean, do you? It was literally a shift overnight from not pretty to wow you're that close to having this go crazy south crazy fast. I've assumed it's when it actually turns to infection.

Now that's an interesting idea. I'm all about anything I can put on my phone, mercy. I'll have to chew on that and come up with something. The flu season starts in the fall, so I could put in monthly reminders or something. I could put in spring reminders about zyrtec and adding arnuity if I'm taking zyrtec, etc. That would be layers of protection. I had some odd symptoms that I think were connected, but I'm still mulling it. I had some odd repetitive behaviors pop up that I thought I had pretty tamped down. I don't really have an explanation for that, and it was later in the week, as the bronchitis was increasing. The fevers were decreasing and the bronchitis and the repetitive behaviors increased. I don't know why. I thought I'd just watch it for patterns next time. It might be my body was signaling the physiological stress of the illness, don't know. The emotional stress was in the weeks before the virus exposure, so at that point it was too late, sigh. But I put on my written plan any viral exposure when under stress, call for prednisone. Basically I'm that much more likely to be sick that I might as well just. By the time I actually did it, it would be obvious I was getting sick and needed it. Fwiw, I did last longer here. It doesn't sound like much, but it took a whole week to convert to death march. Last fall, I had an exposure where I went from exposure to a virus to pneumonia in a weekend, Friday to Monday morning. For real. I was that susceptible. So we've made tons of progress, considering how bad this bug was, considering how long I lasted. And getting that stressful stuff improved is helping I think. I think it will improve it a bit. Like not gone, but that was just really freaky to be converting to pneumonia so fast. This is better, because now I actually can have a plan and hope the steps might slow it down and catch it.

Oh there's a good point. I'm sure it will depend on whether the blood in the mucous stops. If it continues, they'll doubtless have my butt in there.

I'm going to send my action plan to a friend so she can remind me I have one next time I say I'm getting sick.

The doc's office will probably call me Monday morning. They're very good about things. I left a message with the nurse line, so they'll doubtless call. That will be 48 hours on the meds, so hopefully it will be settling down by then. I'm definitely glad I went. I was really afraid for where I'd have been on Monday without going, sigh. I was just too worn down.

Yeah, sigh, I hear you. I think I had been having mild asthma for years on and off without realizing it and then that really bad first pneumonia did that damage. Now it's just bam and it's there. He's kinda middle of the road on the preventative for me. He wanted me to try Singulair, and that has SO many psychiatric side effects I decided that was an utter no go, not going there. The Arnuity is actually one step up on the chart and he would be happy to see me down a step. So he's ok with the Arnuity, but the tier with Singulair is lower and where he thought I could be. I want to try pairing the Arnuity with the glutathione and see if that lets me use it without the headaches. Thanks for the explanation on the antibiotics. I read something about repeated use leading to cancer, so I was trying to be careful. Unfortunately, I'm only 41, meaning I've got a lotta lung years left here, sigh. It's really not cool. I guess we'll see. They were getting more pooly when I tried to lie down in the recliner. I don't know if staying up with HELP or if it's better to just rest and let it roll. Don't know. I don't think, objectively, I needed antibiotics before today. Today was the day I went from improving each day to precipitous decline. Or are you saying he would have done even the antibiotics earlier if I had called?? How would he have known if I was improving? I had the cough, but it was clearly in the bronchitis realm. I don't know. I agree I should have been on the arnuity weeks ago when I realized. But I've got it written out now on paper and it can go in my drawer or I can even copy it for multiple places so we know the plan.

And really, the doc had said they'd be aggressive. It's just with my screwy brain, I wasn't calling. I didn't want antibiotics, so I wan't calling. So I've got the -any sore throat -any cough -any allergies needing zyrtec Are there more scenarios for my if-then page? Some of it I have down pat. I already know how to get pneumonia, lol. Don't need any charts for that. And for the treatment moments where it's low, that's just obvious stuff (meter, albuterol, meter, blah blah). It's more just the viral stuff that gets me. Would it be good to call BEFORE it goes into my lungs? I mean, honestly, I was so doggone sick, SO sick, it was totally obvious it was going to go into my lungs. You could tell that last Saturday night when it started. I was having horrible fevers, body pain. This was never going to be just a sniffle and move on. This was a dragged out war. So should I have called when it was in my sinuses, like before it ever migrated to my lungs?? Or just when it went to my lungs? Cuz really, he'll do anything. I just have to pick up the phone and ask, and it's realizing WHEN to ask. Which, you're right, for me means a stupid flow chart, lol. Ok, seems to me my chart should say -any viral exposure while under severe stress---> immediate call. Because that's the difference. I kicked a virus a few months ago when I wasn't stressed. But this time I did all the same stuff but just with way more stress on my system. The prednisone could have made up the gap.

Ohhhhh. See me having a moment here. Sorta seems obvious when you put it that way.

Ok so I'm writing out the flow chart to put with my inhalers. -any sore throat-Arnuity + glutathione -any cough-call for prednisone immediately Because, yes, you're right. As soon as that cough settles in, it's over. I had really bad pneumonia the very first time, because I didn't realize what was happening. I'm super hypo-sensitve for sensory. I had no, no clue how sick I was till I lay on my bed with an OMG I'm going to die here moment. And my family wasn't taking me in either. It's crazy. So anyways, I'm writing the flow chart and that's as far as I got. Anything else?

Yeah, I think it creeped up on me, sigh. Like I just forgot. Like you're right that if I had the brilliant things written down that I already knew to do, I could have done them. In my defense, I really was terribly sick as soon as it started, and the outcome is the same as when I've taken the inhalers and everything. I still ended up on an antibiotic, sigh. But I've been taking the zyrtec for a few weeks, yes. I knew I was having some spring allergy problems. The pollen is high right now. So what I could do is start a running list myself. I tend to forget things honestly. Like I really seriously forget things. But I could put the list in my drawer with my inhalers, and then it would be there, bold as brass, saying what to do. I wouldn't have to wait for a doctor to make that, because I now know enough. I could just write it out so I don't forget. On the headaches, my dd was telling me to pair glutathione with these wicked things. The Zyrtec gives me headaches too. I'm just really sensitive. With the glutathione, I do ok, so I thought that was a good plan. My liver is probably the cause, so probably any alternative would give me headaches as well. The glutathione will probably work. I had been taking it with the zyrtec and it was helping. I ran out this week but ordered more today.

Ok, so I ordered a pulse oximeter. We'll learn something from it, I'm sure. Don't know what, but we'll compare numbers and learn something. It may be that sometimes my O2 is low when my air flow seems fine or vice versa, dunno. Then they had ads for temporal thermometers. The clinic had these. Do they work? Is there a good one? That could make my life simpler. I would love to be able to check ds more simple (and myself). Every time this stuff happens they want to know if I'm running a fever. I'd love to be able to swipe one on my forehead if it actually worked. I can ask around about the doc thing. I don't know. It's clearly a personal failing that I haven't tried, an intransigence. It's not his fault I didn't call, kwim? They were there and I just didn't call, which is my anxiety, my issue. I think the fever is back, grrr. When I tried to rest earlier my lungs got gunky, so I think y'all were right that I was looking at a bad morning tomorrow without some help.

I can look on amazon. My oxygen numbers were not terrible, even with my first (really really bad) round of pneumonia a couple years ago, so I never bothered. It seems like it would be more trivia, but we could see. Thing is, my breathing is FINE most of the time now. I hadn't even needed my albuterol in several months and I was off the Arnuity and fine, stable, doing great. I had a horribly stressful IEP meeting (talking with lawyers, bring in 3 layers of experts, the works, TONS of $$$$$$$ on the line), and that's when this happened. It wasn't just out of the blue. The arnuity gives me headaches, so I can't be on it all the time unless I have to. Are you saying I should be on the Arnuity just year-round to prevent them from so easily going to bronchitis/pneumonia? But it gives me headaches. Ugh. I don't know.

I think the issue is probably me. This pulm doesn't do plans like that or give out scrips ahead, seems like, but they do have very good nurses when you call. It's just that every time I call I get put on an antibiotic, sigh. So I sort of put off calling. I knew mid-week it was probably bronchitis, and if I had been thinking straight, which clearly I wasn't, I would have realized they could have given me prednisone for the bronchitis, maybe saving it from getting this bad. But I didn't call, because I didn't want to hear antibiotics, sigh. So by the time I asked for help, the antibiotics were inevitable. And that's my fault, kwim? I could have called. I knew it was probably bronchitis. I just thought I was getting better. I actually was. Then boom I was in big trouble. So I don't know. People keep talking about their plans with the pulms, and this guy is different. I would have to try another doc, which feels like it has its own complications, sigh. He hasn't really bugged me or interfered or been hard to work with otherwise. Some docs are kind of controlling or have a litany of things they push. He hasn't done that. I don't even keep a GP or see an OB. I haven't been to a doctor, other than for this stuff, in over 15 years, and yes that includes childbirth. I take my kids to docs, psychs, all kinds of people, and I totally skip them myself. Guess it's a mortal flaw. So I don't know that I'd find someone better or different just because I tried someone else. I already drive 35 minutes for this guy. Our small town had a whopping ONE when I started. So I'm already going to a hospital in the big city. They make everything easy, calling it in, and their appointments are always on-time. Fwiw much of the year I don't need to do much for my asthma. I'm usually like once a month, once every other month, on my albuterol. I mainly work on keeping my house clean (dog, dust), taking C, and taking the Zyrtec. It seems directly connected to times of intense stress, and the doc could tell that. He's more wanted to see if we could keep it under control and then go down all the rabbit trails (allergies, etc.) if basic methods weren't enough. So far they have been except that now I'm prone to going to pneumonia or bronchitis every time I get a bug. And I'm not sure how we fix that.

I use Readerware, though I started so many years ago there are probably tons of other options. If people are going to check out books, will you use a physical checkout or do you want it part of the software? That's something to decide early on. I'm not sure you necessarily need tags on the spines for only 1,000 books, just me personally. You could just as easily do colored dots that correspond to shelves. I have over 7k books catalogued, so yes for my shelves I keep active use fiction, etc. organized by author. But just for 1k books, you could probably get along without it. Just pick some major categories (children's, exegetical, devotional, self-help, teaching resources, whatever) that they seem to fall into.

So did you have fun? Did you end up watching a good movie? I definitely would not have cleaned or grocery shopped, lol. When I have time like that, I turn up the music really loud and gab with friends on the phone, not necessarily at the same time.

Well that may explain it, lol. The UC sorta gave me the princess treatment, being extra nice, telling me to get rest, asking me if I wanted anything else, etc. I read online the blood with bronchitis thing was common, but then when you actually talk with people it doesn't seem very common. And I think her let's not mess around meant that, that THEY didn't want it to keep happening but were gonna be aggressive. Well that and I sorta told them that I had talked with my friends on a homeschool board and that the friends had told me I was gonna DIE if I didn't get treatment and that I had come to make sure.