marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
[personal profile] marydell
1. I will not be going to [livejournal.com profile] think_galactic  this weekend, boo.  Persistent sinus infection is persistent, and so a weekend of rest is in order.

2.  The Chicago chapter of the Society for the Appreciation of Train Schedules* had the pleasure of meeting up with Jo Walton for dinner earlier this week.  As I was talking with one person I heard Jo say to another person, "Human society is basically good,"  which surprised me a bit. Once I tuned in properly, however, it emerged that she was talking about programming for a future con, and saying that the "Human Society" track was pretty well set for panelists, i.e. basically good.  Heh.

3. I have an asthma action plan!  I have singulair and xopanex and a peak flow meter.  I have a followup appointment in a month to see how the singulair works for me--since my asthma is mostly allergy-triggered, I am hopeful that I won't need to step up to a flovent or advair, but if I do, the clinic will hook me up.  The peak flow meter is a thing you blow into to measure your air flow.  For a person of my height/weight who does not have asthma, the expected number is about 630 on a scale of 800.  Right now mine is 400. Whee!  Really I'm supposed to measure against my own personal best, not that 630 number, but I have to wait until the sinus infection is gone to get a good measurement.   The meter is a cool thing, because it gives me an empirical basis for determining if I'm in distress, rather than just how I feel.

*me, Neil Rest, [livejournal.com profile] beamjockey , [livejournal.com profile] ashnistrike and Nameseeker.  Jo's train was rather late and Nameseeker's train was elusive.

Date: 2009-06-26 09:40 pm (UTC)
From: [identity profile] pnkrokhockeymom.livejournal.com
My all time personal best is 500, from when I was working out daily. I started working out 3x a week just before heading out to San Diego, and tried to go for some walks while we were there to not get out of the habit.

I do not take xopanex. What is it?

I have a new inhaler that is a combined servent and pulmocort but I cannot remember the name.

I am TERRIFICALLY famous for peakflow noncompliance. This is only okay now that I am well enough to have "warning sign" symptoms before I actually can not breathe. But maybe if you are doing it I will start monitoring too. I am usually 330 when I am not working out regularly, which does NOT make my lung specialist happy but does usually mean "breathing perfectly well and looks normal."

more later. Indian food. xoxox

Date: 2009-06-27 01:04 am (UTC)
From: [identity profile] marydell.livejournal.com
I read thru the stuff that came with the peak flow meter, and actually the doc marked down the number for a male adult instead of a female adult - so really I should be blowing 485, which seems more reasonable.

I don't think I'll comply with it forever, but for a while until we figure out if I'm on the right medicine, at least. Non-compliance is what I'm all about usually.

Xopanex is related to albuterol, a derivative or something. You can only take it every 6 hours, but you can take your usual doses of albuterol on top of it if needed. I've found it doesn't give me the shakes the way albuterol does. They switched Charlie to it when he was needing regular nebulizer treatments because the albuterol was giving him a [can you guess?] rash. So I've inhaled a lot of it while nebbing him and I like it better than albuterol.

By the way, big big BIG thanks for the heads-up about depo-provera and asthma. I was on the lookout for it because of what you said...otherwise I probably wouldn't have even had an up-to-date inhaler, since I usually only need it when I have bronchitis.

Date: 2009-06-27 01:08 am (UTC)
From: [identity profile] marydell.livejournal.com
Oh and I think the combo you're on is probably Advair? That's the most popular combo drug - it's a steroid plus a "long-acting beta agonist" I think. the LABAs don't work well by themselves but do when combined with steroids.

Date: 2009-06-27 02:44 am (UTC)
From: [identity profile] fledgist.livejournal.com
My younger brother suffered from childhood asthma (my childhood disease was epilepsy). His was stress-triggered, and could be driven by events like the arrival of his school report.

Date: 2009-06-27 05:58 am (UTC)
From: [identity profile] marydell.livejournal.com
That would suck, to be stressed and then o2 deprived, leading to more stress. Childhood epilepsy would also suck. My sister has epilepsy--she didn't have it as a child but it showed up as an aftereffect a few years after her stroke. It took about 10 years for her to find a medication that really controlled it.

Date: 2009-06-27 06:43 pm (UTC)
From: [identity profile] fledgist.livejournal.com
"Suck" seems a rather mild word, all things duly evaluated. I feel for your sister.

Date: 2009-06-27 07:47 pm (UTC)
From: [identity profile] marydell.livejournal.com
I'm sorry if I seem to be minimizing your or your brother's troubles; it's not my intention. I tend to use "suck" or "a drag" for things that are actually quite bad, come to think of it. Probably because I grew up experiencing bad stuff that was out of proportion to what my peers were experiencing, without having the vocabulary to really express my situation.

Date: 2009-06-27 08:30 pm (UTC)
From: [identity profile] fledgist.livejournal.com
That's okay, Mary. You have to understand, our father was extremely angry at him for being ill, since he saw it as a form of shirking. Very puritan upbringing we all had.

Date: 2009-06-27 10:14 pm (UTC)
From: [identity profile] marydell.livejournal.com
Ah, I do see. I'm sorry. I wasn't punished for being ill, exactly, but making a fuss was frowned upon by certain parties, so there were times that I found it best not to report my symptoms. My health wasn't well attended-to when I was a child, to put it very mildly.

Date: 2009-06-28 12:34 am (UTC)
From: [identity profile] fledgist.livejournal.com
Was that a girl v. boy thing, or because your parents couldn't afford health care?

Date: 2009-06-28 02:07 am (UTC)
From: [identity profile] marydell.livejournal.com
Neither, I think--we had health care, but the human energy resources were a little overtaxed, particularly by the time child #7 (me) came along.

Date: 2009-06-28 02:44 am (UTC)
From: [identity profile] fledgist.livejournal.com
Ah, I see.

Date: 2009-06-27 05:45 am (UTC)
From: [identity profile] shweta-narayan.livejournal.com
I'm about a 400 too -- on a good day, been having trouble getting over 350 lately and even that's a lot better than where I was last year (though I've been on flovent since the FDA approved it).

But just so you know -- if you need xopenex, then presumably you have an albuterol reaction? Meaning the jitters, etc? Me too, if so -- and if you're like me, then if you do turn out to need a maintenance inhalor, do not let them put you on advair or serevent (advair is just flovent+serevent) unless you know flovent alone won't work and you have really good reasons to think it'll be okay. Because serevent is a long-acting beta agonist, and can hit the sensitive more strongly than many doctors will admit.

Here's my story. I've known I had beta-agonist overreactions for a long time because albuterol was always problematic. But a university pulmonary specialist told me with great confidence that the long-acting beta agonist in advair would not be a problem. Like a little idiot I believed his authority and tried it.

Followed the scariest week of my life, at least in retrospect. My peak flow was as good as it had ever been -- 440 or so on a regular basis -- but I was jittery, panicky, having memory lapses, zoning out mid-sentence, zoning out for hours, not sleeping. My speech got garbled, I couldn't understand what was being said to me, and I knew something was wrong but couldn't really tell what. I stopped the Advair after 3 days, but the symptoms continued for four more. And when I stopped taking the advair, my peak flow crashed.

My peak flow didn't really pick up again for 3 years, and 5 years later I'm still having minor-but-noticeable memory lapses and zone-outs, which never happened before I took Advair.

Seriously it's scary stuff.

Date: 2009-06-27 05:55 am (UTC)
From: [identity profile] marydell.livejournal.com
Eek! Thank you for the heads up! My dad is taking Advair and is fine with it, but I think he's fine with Albuterol as well. I'm ok with 1 or 2 puffs of Albuterol but more than that makes me shaky. During Charlie's last ER visit we had to nebulize him with Albuterol for a whole hour, and by the end of that I had to lie down!

I took seravent back before they noticed that it can kill people when used without a steroid (because it's not effective, for some people, so they have more asthma). But I only used it for short periods when I'd have bronchitis. So I'll definitely keep what you say in mind.

I really hope the singulair works for me, because I don't want a steroid, because I already get every resp infection that comes along, and I'm already on a bone-density-stealing drug. (Inhaled steriods only have a small chance of that, but depo-provera has a black box warning for it, and I plan to be on it for 10 years...)

Date: 2009-06-27 06:10 am (UTC)
From: [identity profile] shweta-narayan.livejournal.com
I really hope the singulair works for you. For the people who it works for, it's the miracle cure :)

One friend of mine had no effect with the normal singulair dosage, but double dosage helped him marvellously. If you have the sort of doctor you can talk to about that sort of thing, it may be a useful datapoint.

It sounds like you're less sensitive to albuterol than me -- two puffs would definitely get me the jitters etc before the advair, and after my bout with advair I couldn't use it at all (albuterol will now make me zone out and panic, sometimes at the same time, for most of the next 24 hours) so xopenex is a wonderful thing.

So maybe the Advair would be okay for you. Though it also seems to have long-term scary effects, so I'd still regard it with caution.

I believe so far the results say flovent doesn't do the bone-density-decreasing, but it's too soon to know for sure. Pretty sure it's a vast improvement over the first generation maintenance steroids, but if there was anything else that worked for me I'd be switching over :)

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