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jenettAs you might or might not know, September 14th to 21st is National Chronic Illness Awareness week. (Who picks these things, is what I want to know.) And they've set up a 30 question memeto share. I'm not crazy about the wording/formatting of some of the questions, but I'd been meaning to talk about some of the background sometime soon anyway, so this is a good excuse.
What are mine?
I've got two basic ones, and one that I'm trying to keep sub-clinical, thanks.
I was diagnosed with asthma in 1995, but it was showing up in more limited ways back to 1990 or so. I've also got some lung scarring from a bout of bacterial pneumonia when I was 11 (which would have been 86 or so) which really is not your ideal combination of lung issues. It's generally under decent control, which is a good thing, because my med options all have very non-ideal pieces.
When I'm having problems, I'll usually be coughing a lot more. (One of the faculty where I work compares it to a tubecular cough), and I have a hard time climbing stairs or inclines (I think this is due to where the lung scarring is: something about the incline of my body makes things much harder.) I sometimes wheeze, but it's usually not particularly audible unless you're very close to me.
I've had migraines since I was about 15 (1990), on and off. At their worst, they were every week or two (with one acute 3 week long one at the end of the job previous to the current one at [school].) At their best, the last couple of years, I've been averaging one every 4-6 months. (Except for a weird bobble this spring that seems to have subsided again with some help.)
People think that migraines are mostly a headache, but that does not in fact seem to be true: more recent research suggests that they're a fairly complex set of neurological and biochemical events that sort of get all tangled up with each other. When mine hit, I tend to be completely not hungry at all for several days, my internal temperature calibration goes haywire (I'll go from shivering with cold while tucked in a warm bed to sweating in the space of an hour), my reflexes and coordination go to pieces (this is why I go home when I get one: I don't trust myself to drive when they fully hit), and I look pretty awful. (To the point that my co-workers will tell me to go home now.)
The one I'm trying to keep sub-clinical is a particular combination of symptoms that shows up when I'm especially tired or sleeping badly: it's a combination of achiness, lack of coordination/clumsiness, and some other neurological signs that resemble a number of fibromyalgia symptoms. (However, they don't generally last very long - usually until the next decent sleep - and it's a notoriously bad set of symptoms to get a diagnosis on, so instead, I do sensible things about sleep and exercise and such as I can, and keep an eye on it to make sure it isn't getting worse/more often/etc.)
2) Adjustments, considerations, etc.
I've been living with both the migraines and asthma for so long (more than half my life for the migraines, and nearly that for the asthma) that it doesn't feel like 'adjustments' anymore. It's just the way my life is.
However, it does mean:
- Any event that has demands outside of my usual schedule requires some special planning - generally, I need to make sure that I've been getting plenty of sleep before (and have catch-up time after). If I'm out at an event all weekend, for example, I need to really limit the number of things I do the week before and after.
- Camping, in particular, is really tricky for me, because the possible exposure to asthma triggers is much higher. This means there's a whole raft of Pagan festivals that I'd love to go to, but probably won't manage.
- If I'm visiting a home where there's a lot more allergen issues (like my former group's covenstead), I need to plan well in advance - both in terms of getting plenty of sleep and having healthy reserves, but also to take allergy meds 2-3 days in advance, ideally. (Otherwise, I'll start having allergy and asthma symptoms within 2-3 hours.)
- That I need to plan any housecleaning that's going to move dust and dander around so that it has a number of hours to clear before I need to sleep. (Living somewhere with wood floors and an air filter going all the time helps a lot.)
- Where I sleep is a big deal for me - both in terms of avoiding allergens (since I'm there for 8+ hours every night, it's a huge impact on the body) and in terms of poor sleep being one of my most persistent migraine triggers.
That's why being out after 8:30 or so on a weeknight is hard for me, and I can generally do it only one night a week. (I get up at 5:30, and leave for work at 6:45, so any night I'm away from home after 8:30, I'm shorting myself on sleep, by the time you count in time for a bath, reading for a few minutes in bed to decompress, etc.)
(I bathe at night for a bunch of reasons, but it actually started with my mother's allergen issues. These days, it helps to get pollen and other allergens out of my hair before I sleep. Also, in Minnesota, it's practical if you have long hair, since wet hair on winter mornings = ice, and that's really not fun.)
- I'm lucky not to have food triggers or food allergies - and weirdly enough, I'm mostly not allergic to tree pollen. (I do have a lot of fall pollen allergies, and I'm extremely reactive to most mold and dampness related allergens, which makes fall usually my hardest season.) I'm also not allergic to most scents, though commercial perfumes tend to make my lungs catch a little bit.
- I'm far more allergic to dogs than to cats (as you might tell by the fact I *have* a cat - though my allergy specialists have thrown fits about that.)
- I'm also very reactive to feathers in bedding, sensitive to dustmites, and a few other things. (This makes hotels sort of tricky. I react even to the 'non-allergenic down' stuff, though not as badly.) Also to cigarette smoke, and I tend to be reactive to buildings with poor air circulation if I'm in them for more than an hour or two.
Medications
I have a rescue inhaler (used for acute needs) for the asthma. (This is albuterol, in the US, and a pretty common one, though I know people (Hi, D) who can't take it.)
I take over the counter loratadine (aka Claritin) for allergies, though I still really miss Seldane, which worked a lot better for me.
I've tried various of the steroid inhalers for asthma, and they've uniformly not worked that great for me *and* get me into psychotropic side effects if I take them for more than a week or two (in my case, very fast cycling (i.e. 2-6 hour) mood swings. These are no fun for anyone, including me, so I only take them if I have absolutely no choice.
I have in the past taken various of the opiates (Fiorocet, Fiornal) for migraine pain. In the 3 week long bout I had in late 2000, my doctor tried me on a month of bood pressure medication - they'd discovered that in some people, this breaks the cycle of stuff that causes at least some migraines. It worked really well in me, and since then, I've rarely had actual migraine pain - instead, I get all the aura and neurological symptoms, but not the pain. (And really, I'm okay with that.)
There are migraine prophylatics out there, but they have side effects, or require someone who'd be able to drive me home afterwards (at least the first time or two), or some other complication, and since my migraines are mostly happening in ways that I can work around or where rest/downtime is the thing that really stops them, I go do that instead.
Alternative medicine
And instead of the meds, I've had a *lot* more luck with herbal approaches.
For the asthma, we do a combination of things to help my lungs stay healthy longer (and to recover more quickly from colds and other times they're not working well.) Pleurisy root in my tea is my friend.
When my migraines started triggering off weather changes this spring, we also tried shifting one of the herbs in my daily tea, and adding angelica instead. That seems to have helped quite a lot. (And again, it suggests that the migraine is a particular symptom of a specific kind of internal imbalance, rather than a headache, per se.)
I also take a daily tea (usually two cups of same) that's designed to be a tonic and support: my herbalist thinks that a chunk of my lung issues aren't lung issues as much as they are weak liver and kidney issues (and since what we're trying for that seems to be helping a lot, I'm all for that.) Since I started working with her, I've had *many* fewer winter colds, and the ones I've had have been a lot milder.
The trick is that the decoction requires 20 minutes of boiling in the morning (part of why I get up so early, because it also needs to cool a bit before I take it off to work with me.) I consider it well worth the time, but it adds some complications when travelling.
I also take vitamin A and E supplements when I start having lung issues: my herbalist pointed out that lungs need fat soluble vitamins to heal, which explains a whole lot of very specific cravings I used to have.
Regarding work
I generally expect to miss about one day or part of a day every 6-8 weeks or so due to some medical issue (far more commonly migraine than anything else), though that number, weirdly enough, has been down the last year or so despite vast changes in stress levels. Fortunately, this isn't a huge deal, as my migraines tend to hit during the day, rather than first thing in the morning, so I'll come in, not be feeling great, have it hit, and then need to go home, rather than not come in at all. By now, I've usually got a good idea of whether I'll need to stay home the next day.
Things I regret
I'm never going to get to scuba dive: it's a *really* bad idea with poorly working lungs. Mountain climbing (which I'm not as inclined towards), too, or living anywhere high-altitude for very long.
Horseback riding, which I dearly would love to get back to, is also tricky: there's a lot of potential allergen sources in a barn (including one that my mother's got: Farmer's Lung disease, which is a hyperallergy to a specific mold that grows on hay.) While I'd like to get back to riding in the next few years, realistically, it also means looking at things like allergy shots, riding in an extremely well-managed barn, and being able to do a slow ramp up over time so that I can carefully manage allergy responses. That's a lot of planning and coordination, and it's not something I have the mental energy for right now.
And with the migraines and the sleep needs, there's a lot of cool stuff out there I'd love to go to, or say yes to - and I just can't, if I'm also going to be able to make it to work, or to do other things in my life.
Things I resent
Exercise is really challenging for me, because I will go along being generally active for a couple of months, and then hit some kind of lung issue (cold, minor acute attack, etc.) and need to cut way back on physical activty for a while (usually 1-3 weeks, but sometimes longer) By the time that's over, I've lost a lot of ground in terms of stamina, movement, etc. and I have to work to get it all back. This is absurdly frustrating, and it makes it really hard for me to be really gung-ho about any kind of exercise. (There's only so many times you can be really excited about walking around the block without wheezing, y'know?)
What are mine?
I've got two basic ones, and one that I'm trying to keep sub-clinical, thanks.
I was diagnosed with asthma in 1995, but it was showing up in more limited ways back to 1990 or so. I've also got some lung scarring from a bout of bacterial pneumonia when I was 11 (which would have been 86 or so) which really is not your ideal combination of lung issues. It's generally under decent control, which is a good thing, because my med options all have very non-ideal pieces.
When I'm having problems, I'll usually be coughing a lot more. (One of the faculty where I work compares it to a tubecular cough), and I have a hard time climbing stairs or inclines (I think this is due to where the lung scarring is: something about the incline of my body makes things much harder.) I sometimes wheeze, but it's usually not particularly audible unless you're very close to me.
I've had migraines since I was about 15 (1990), on and off. At their worst, they were every week or two (with one acute 3 week long one at the end of the job previous to the current one at [school].) At their best, the last couple of years, I've been averaging one every 4-6 months. (Except for a weird bobble this spring that seems to have subsided again with some help.)
People think that migraines are mostly a headache, but that does not in fact seem to be true: more recent research suggests that they're a fairly complex set of neurological and biochemical events that sort of get all tangled up with each other. When mine hit, I tend to be completely not hungry at all for several days, my internal temperature calibration goes haywire (I'll go from shivering with cold while tucked in a warm bed to sweating in the space of an hour), my reflexes and coordination go to pieces (this is why I go home when I get one: I don't trust myself to drive when they fully hit), and I look pretty awful. (To the point that my co-workers will tell me to go home now.)
The one I'm trying to keep sub-clinical is a particular combination of symptoms that shows up when I'm especially tired or sleeping badly: it's a combination of achiness, lack of coordination/clumsiness, and some other neurological signs that resemble a number of fibromyalgia symptoms. (However, they don't generally last very long - usually until the next decent sleep - and it's a notoriously bad set of symptoms to get a diagnosis on, so instead, I do sensible things about sleep and exercise and such as I can, and keep an eye on it to make sure it isn't getting worse/more often/etc.)
2) Adjustments, considerations, etc.
I've been living with both the migraines and asthma for so long (more than half my life for the migraines, and nearly that for the asthma) that it doesn't feel like 'adjustments' anymore. It's just the way my life is.
However, it does mean:
- Any event that has demands outside of my usual schedule requires some special planning - generally, I need to make sure that I've been getting plenty of sleep before (and have catch-up time after). If I'm out at an event all weekend, for example, I need to really limit the number of things I do the week before and after.
- Camping, in particular, is really tricky for me, because the possible exposure to asthma triggers is much higher. This means there's a whole raft of Pagan festivals that I'd love to go to, but probably won't manage.
- If I'm visiting a home where there's a lot more allergen issues (like my former group's covenstead), I need to plan well in advance - both in terms of getting plenty of sleep and having healthy reserves, but also to take allergy meds 2-3 days in advance, ideally. (Otherwise, I'll start having allergy and asthma symptoms within 2-3 hours.)
- That I need to plan any housecleaning that's going to move dust and dander around so that it has a number of hours to clear before I need to sleep. (Living somewhere with wood floors and an air filter going all the time helps a lot.)
- Where I sleep is a big deal for me - both in terms of avoiding allergens (since I'm there for 8+ hours every night, it's a huge impact on the body) and in terms of poor sleep being one of my most persistent migraine triggers.
That's why being out after 8:30 or so on a weeknight is hard for me, and I can generally do it only one night a week. (I get up at 5:30, and leave for work at 6:45, so any night I'm away from home after 8:30, I'm shorting myself on sleep, by the time you count in time for a bath, reading for a few minutes in bed to decompress, etc.)
(I bathe at night for a bunch of reasons, but it actually started with my mother's allergen issues. These days, it helps to get pollen and other allergens out of my hair before I sleep. Also, in Minnesota, it's practical if you have long hair, since wet hair on winter mornings = ice, and that's really not fun.)
- I'm lucky not to have food triggers or food allergies - and weirdly enough, I'm mostly not allergic to tree pollen. (I do have a lot of fall pollen allergies, and I'm extremely reactive to most mold and dampness related allergens, which makes fall usually my hardest season.) I'm also not allergic to most scents, though commercial perfumes tend to make my lungs catch a little bit.
- I'm far more allergic to dogs than to cats (as you might tell by the fact I *have* a cat - though my allergy specialists have thrown fits about that.)
- I'm also very reactive to feathers in bedding, sensitive to dustmites, and a few other things. (This makes hotels sort of tricky. I react even to the 'non-allergenic down' stuff, though not as badly.) Also to cigarette smoke, and I tend to be reactive to buildings with poor air circulation if I'm in them for more than an hour or two.
Medications
I have a rescue inhaler (used for acute needs) for the asthma. (This is albuterol, in the US, and a pretty common one, though I know people (Hi, D) who can't take it.)
I take over the counter loratadine (aka Claritin) for allergies, though I still really miss Seldane, which worked a lot better for me.
I've tried various of the steroid inhalers for asthma, and they've uniformly not worked that great for me *and* get me into psychotropic side effects if I take them for more than a week or two (in my case, very fast cycling (i.e. 2-6 hour) mood swings. These are no fun for anyone, including me, so I only take them if I have absolutely no choice.
I have in the past taken various of the opiates (Fiorocet, Fiornal) for migraine pain. In the 3 week long bout I had in late 2000, my doctor tried me on a month of bood pressure medication - they'd discovered that in some people, this breaks the cycle of stuff that causes at least some migraines. It worked really well in me, and since then, I've rarely had actual migraine pain - instead, I get all the aura and neurological symptoms, but not the pain. (And really, I'm okay with that.)
There are migraine prophylatics out there, but they have side effects, or require someone who'd be able to drive me home afterwards (at least the first time or two), or some other complication, and since my migraines are mostly happening in ways that I can work around or where rest/downtime is the thing that really stops them, I go do that instead.
Alternative medicine
And instead of the meds, I've had a *lot* more luck with herbal approaches.
For the asthma, we do a combination of things to help my lungs stay healthy longer (and to recover more quickly from colds and other times they're not working well.) Pleurisy root in my tea is my friend.
When my migraines started triggering off weather changes this spring, we also tried shifting one of the herbs in my daily tea, and adding angelica instead. That seems to have helped quite a lot. (And again, it suggests that the migraine is a particular symptom of a specific kind of internal imbalance, rather than a headache, per se.)
I also take a daily tea (usually two cups of same) that's designed to be a tonic and support: my herbalist thinks that a chunk of my lung issues aren't lung issues as much as they are weak liver and kidney issues (and since what we're trying for that seems to be helping a lot, I'm all for that.) Since I started working with her, I've had *many* fewer winter colds, and the ones I've had have been a lot milder.
The trick is that the decoction requires 20 minutes of boiling in the morning (part of why I get up so early, because it also needs to cool a bit before I take it off to work with me.) I consider it well worth the time, but it adds some complications when travelling.
I also take vitamin A and E supplements when I start having lung issues: my herbalist pointed out that lungs need fat soluble vitamins to heal, which explains a whole lot of very specific cravings I used to have.
Regarding work
I generally expect to miss about one day or part of a day every 6-8 weeks or so due to some medical issue (far more commonly migraine than anything else), though that number, weirdly enough, has been down the last year or so despite vast changes in stress levels. Fortunately, this isn't a huge deal, as my migraines tend to hit during the day, rather than first thing in the morning, so I'll come in, not be feeling great, have it hit, and then need to go home, rather than not come in at all. By now, I've usually got a good idea of whether I'll need to stay home the next day.
Things I regret
I'm never going to get to scuba dive: it's a *really* bad idea with poorly working lungs. Mountain climbing (which I'm not as inclined towards), too, or living anywhere high-altitude for very long.
Horseback riding, which I dearly would love to get back to, is also tricky: there's a lot of potential allergen sources in a barn (including one that my mother's got: Farmer's Lung disease, which is a hyperallergy to a specific mold that grows on hay.) While I'd like to get back to riding in the next few years, realistically, it also means looking at things like allergy shots, riding in an extremely well-managed barn, and being able to do a slow ramp up over time so that I can carefully manage allergy responses. That's a lot of planning and coordination, and it's not something I have the mental energy for right now.
And with the migraines and the sleep needs, there's a lot of cool stuff out there I'd love to go to, or say yes to - and I just can't, if I'm also going to be able to make it to work, or to do other things in my life.
Things I resent
Exercise is really challenging for me, because I will go along being generally active for a couple of months, and then hit some kind of lung issue (cold, minor acute attack, etc.) and need to cut way back on physical activty for a while (usually 1-3 weeks, but sometimes longer) By the time that's over, I've lost a lot of ground in terms of stamina, movement, etc. and I have to work to get it all back. This is absurdly frustrating, and it makes it really hard for me to be really gung-ho about any kind of exercise. (There's only so many times you can be really excited about walking around the block without wheezing, y'know?)
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30 questions - my answers
Date: 2009-09-14 04:33 am (UTC)2. I was diagnosed with it in the year: 1984, 1981, 1983, 2005
3. But I had symptoms since: 1984, 1970, 1976, 1992
5. Most people assume: I am faking (I breath well as I am a singer), That it is nothing, That if I seem happy that I can't be depressed, that if I loose weight it will go away.
6. The hardest part about mornings are: getting out of bed.
8. A gadget I couldn’t live without is: Cpap and guitar tuner
9. The hardest part about nights are: Worries, noticing how hard it is to breath and worrying if I take the medication to breath that I won't get to sleep.
13. Regarding working and career: it is hard to know what is appropriate to share or not. It is hard to make sure that I apply for FEMLA yearly...even though I may only need not need it at all most years.
14. People would be surprised to know: Most days I carry a cloud around with me and feel like a failure. No matter how big my smile is.
15. The hardest thing to accept about my new reality has been: that I am not perfect and that it is okay and not really strange at all.
16. Something I never thought I could do with my illness that I did was: dance, receive awards, become respected.
19. It was really hard to have to give up: Spending time outside in the spring and fall and when there are air warnings. Being a country mouse at Baggiecon.
21. If I could have one day of feeling normal again I would: sleep over on a friend's couch.
26. When someone is diagnosed I’d like to tell them:
work on breath strengthening exercises
Don't put off the appointments with the urologist and find on who works specifically on your condition.
Tomorrow is always another day, sometimes one need medication to correct what nature did not give, and there is always someone who will help one - Keep looking.
Cpaps are a a blessing.
27. Something that has surprised me about living with an illness is: how many people don't get any of it and how many people don't want to talk about anything regarding their body.
28. The nicest thing someone did for me when I wasn’t feeling well was: You have so much courage, don't you realize that.
no subject
Date: 2009-09-13 09:38 pm (UTC)no subject
Date: 2009-09-15 02:40 pm (UTC)Life is a complexity in and of itself. Illness, no matter how hidden or invisible to the casual onlooker, makes it into a veritable maze!