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Author Topic: Chronic Lung Illness Sufferers  (Read 15241 times)

Aine Rayne

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Chronic Lung Illness Sufferers
« on: October 17, 2012, 11:07:16 pm »
Saying what up to others with chronic lung problems.

Hi, I'm Rachael and I've had asthma my entire life. I'm 21, had my first ER visit at 2 and currently feeling frustrated, disenchanted and annoyed as I go through a completely random flare up that won't go away.

How do you cope with your issue? Wanna share advice? Just give hugs and turn on a HEPA filter? How do you talk to people about it? What do you do for people who over-worry or under-worry? How about yourself? What do you do to keep calm or upbeat when facing issues getting control over your lungs and getting healthcare? You know, usual stuff we chronic illness sufferers face. Just feeling in need of some encouragement and less feeling alone in my suffering ya know?
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Shine

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Re: Chronic Lung Illness Sufferers
« Reply #1 on: October 18, 2012, 12:04:31 am »
Quote from: Aine Rayne;77001
Saying what up to others with chronic lung problems.

Hi, I'm Rachael and I've had asthma my entire life. I'm 21, had my first ER visit at 2 and currently feeling frustrated, disenchanted and annoyed as I go through a completely random flare up that won't go away.

How do you cope with your issue? Wanna share advice? Just give hugs and turn on a HEPA filter? How do you talk to people about it? What do you do for people who over-worry or under-worry? How about yourself? What do you do to keep calm or upbeat when facing issues getting control over your lungs and getting healthcare? You know, usual stuff we chronic illness sufferers face. Just feeling in need of some encouragement and less feeling alone in my suffering ya know?

 
*hugs*

One method to cope is to baby yourself for a bit: curl up with a good book or movie, a cuppa hot tea (unless that exacerbates your symptoms), switch on the HEPA filter, and feel free to sniffle a bit on behalf of yourself if you need to.

The healthcare bit is just, ugh. So frustrating. Lots of nurses and doctors like to tell me the worst of my symptoms are psychosomatic. Look, just because I'm not wheezing doesn't mean I'm *not* having troubles breathing. But no, I'm just imagining it! Totally! I'm just trying to get attention!

(Psh, please.)

Do you have to deal with that much?
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Aine Rayne

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Re: Chronic Lung Illness Sufferers
« Reply #2 on: October 18, 2012, 12:17:01 am »
Quote from: Shine;77004
*hugs*

One method to cope is to baby yourself for a bit: curl up with a good book or movie, a cuppa hot tea (unless that exacerbates your symptoms), switch on the HEPA filter, and feel free to sniffle a bit on behalf of yourself if you need to.

The healthcare bit is just, ugh. So frustrating. Lots of nurses and doctors like to tell me the worst of my symptoms are psychosomatic. Look, just because I'm not wheezing doesn't mean I'm *not* having troubles breathing. But no, I'm just imagining it! Totally! I'm just trying to get attention!

(Psh, please.)

Do you have to deal with that much?

 
Well I only wish I had a HEPA filter. I can't afford one and the poor thing would be working overtime since I live with a smoker. I'm currently being forced to get a new doctor and now I'm on an HMO plan so I can't even get access to a specialist without shit hoops of referrals and paperwork. And I don't even want to begin thinking about affording my medication, which I'm sure I'll be put on when I get a doctor.

Also, my doctor pet peeve is all about exercise and "eating better". Like, I'm not sitting on my ass all day eating chips and drinkin soda. If I have soda, it's solely for caffeine content to ease wheezing. But that exercise bit, they all say the same thing and give the SAME GODSDAMNED ADVICE. "Take your inhaler before you start, you'll be fine, I know this because all my asthmatics do it and I even have asthmatic athletes as patients!" Just, shut up already about it! I have to walk every day, and go up and down steps. It all wears me out and catches me short of breath, and it's not because I just need to do more so my stamina will increase. I have had nothing but jobs involving manual labor and exertion, wanna tell me where my exercise isn't? And that meds before exercise bullshit? Not only does it jump my heart rate and cause trembling, but those side effects kill what little stamina I have. Try again.

I wish a doctor or nurse would tell me my breathing trouble was hypochondria just because I wasn't wheezing. Wanna stick that stethoscope on my chest or back and listen again? I would go off until I was so angry I was wheezing. Or let my mom do it. I don't know who is more annoying, an asthmatic doctor or a non-asthmatic. You'd think the former would be more understanding and sympathetic, but plenty aren't. And the latter are just as removed from the experience as all non-asthmatics.

I hadn't thought about tea. Tea can be soothing, especially if it's cold, to my lungs. It does often make my chest burn, but that's because it's hot and alerts me to how bad my inflammation may be. Cold makes things hurt and spasm, heat and humidity just makes me feel like I'm not getting enough air, even if I'm not actually flaring or have just used my meds. I should make some tea, it does help most of the time.
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Shine

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Re: Chronic Lung Illness Sufferers
« Reply #3 on: October 18, 2012, 01:02:07 am »
Quote from: Aine Rayne;77008
Well I only wish I had a HEPA filter. I can't afford one and the poor thing would be working overtime since I live with a smoker. I'm currently being forced to get a new doctor and now I'm on an HMO plan so I can't even get access to a specialist without shit hoops of referrals and paperwork. And I don't even want to begin thinking about affording my medication, which I'm sure I'll be put on when I get a doctor.

Also, my doctor pet peeve is all about exercise and "eating better". Like, I'm not sitting on my ass all day eating chips and drinkin soda. If I have soda, it's solely for caffeine content to ease wheezing. But that exercise bit, they all say the same thing and give the SAME GODSDAMNED ADVICE. "Take your inhaler before you start, you'll be fine, I know this because all my asthmatics do it and I even have asthmatic athletes as patients!" Just, shut up already about it! I have to walk every day, and go up and down steps. It all wears me out and catches me short of breath, and it's not because I just need to do more so my stamina will increase. I have had nothing but jobs involving manual labor and exertion, wanna tell me where my exercise isn't? And that meds before exercise bullshit? Not only does it jump my heart rate and cause trembling, but those side effects kill what little stamina I have. Try again.

I wish a doctor or nurse would tell me my breathing trouble was hypochondria just because I wasn't wheezing. Wanna stick that stethoscope on my chest or back and listen again? I would go off until I was so angry I was wheezing. Or let my mom do it. I don't know who is more annoying, an asthmatic doctor or a non-asthmatic. You'd think the former would be more understanding and sympathetic, but plenty aren't. And the latter are just as removed from the experience as all non-asthmatics.

I hadn't thought about tea. Tea can be soothing, especially if it's cold, to my lungs. It does often make my chest burn, but that's because it's hot and alerts me to how bad my inflammation may be. Cold makes things hurt and spasm, heat and humidity just makes me feel like I'm not getting enough air, even if I'm not actually flaring or have just used my meds. I should make some tea, it does help most of the time.

 
I am so sorry about your healthcare troubles. :( It's tough to get to a specialist, which is what you need. Family physicians (or gods forbid an inexperienced intern :\) don't always get it. For example, I had an intern prescribing me Flovent. . . which makes my airways spasm. But she kept prescribing it!

Smokers just make it worse. D:

Oh geez, the "exercise and your lungs will fart magical rainbows" advice. In some ways it's helpful, because being out of shape will make symptoms worse. It's just the advice often comes with a condescending tone, almost as if you're a stupid puppy who needs to be corrected. And anyway, if your symptoms aren't well-controlled, you can be an Olympic athlete and still get nowhere.

But taking albuterol fifteen minutes before physical exertion does usually help. Is that what you normally take?

I'd say non-asthmatics are worse than the doctors. How many times have you heard something like, "c'mon, just tough it out!" from a non-asthmatic? Yeah, tough it out all the way to the hospital. After all, the wheezing and shortness of breath is weakness leaving the body. *sarcasm overload*

Hopefully that spot of tea makes you feel a bit better.
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Aine Rayne

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Re: Chronic Lung Illness Sufferers
« Reply #4 on: October 18, 2012, 01:21:12 am »
Quote from: Shine;77013
I am so sorry about your healthcare troubles. :( It's tough to get to a specialist, which is what you need. Family physicians (or gods forbid an inexperienced intern :\) don't always get it. For example, I had an intern prescribing me Flovent. . . which makes my airways spasm. But she kept prescribing it!

Smokers just make it worse. D:

Oh geez, the "exercise and your lungs will fart magical rainbows" advice. In some ways it's helpful, because being out of shape will make symptoms worse. It's just the advice often comes with a condescending tone, almost as if you're a stupid puppy who needs to be corrected. And anyway, if your symptoms aren't well-controlled, you can be an Olympic athlete and still get nowhere.

But taking albuterol fifteen minutes before physical exertion does usually help. Is that what you normally take?

I'd say non-asthmatics are worse than the doctors. How many times have you heard something like, "c'mon, just tough it out!" from a non-asthmatic? Yeah, tough it out all the way to the hospital. After all, the wheezing and shortness of breath is weakness leaving the body. *sarcasm overload*

Hopefully that spot of tea makes you feel a bit better.

 
I do take albuterol, that is the one constant I get in the medication coaster. I've been using it since I was little. I thankfully have never had a non-asthmatic say such a thing to me. Though I did have a douchebag gym teacher who gave me a D for not participating in gym class despite the fact he had seen me using my inhaler just because I walked around the field on a pollen-filled day among other times. That damn d kept me from going to prom too. The doctor I had at the time was such a bitch and had her head up her ass because she had athletic asthmatic patients and insisted I could and should be one too and wouldn't give me a note. Like, she didn't expect magical athleticism, but she didn't think I needed a break from gym and that the thirty steps between each floor in my school was enough. She thought that shit would be good for me and that my asthma wasn't an excuse.

My last doctor was more sympathetic, but I still don't think he really got it. Honestly I don't think he really got my Crazy either. And the tea soothes as long as there's steady flow down my throat, otherwise my chest still hurts XD

Unfortunately, I do have several family members who don't get it either. They have a toned down thought process. "Well you don't seem that bad and we're not that bad and you're clearly not doing enough (in our minds) to alleviate these supposed problems, so it must not be that bad. After all, we're learned and have the 'same problems' and got over it/grew out of it and give you suggestions to do the same." That attitude applies both to Crazy and asthma. Meh, chest hurts... I'm not actually wheezing, but it does burn and I am coughing.
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Valentine

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Re: Chronic Lung Illness Sufferers
« Reply #5 on: October 18, 2012, 04:11:03 am »
Quote from: Aine Rayne;77017
I do take albuterol, that is the one constant I get in the medication coaster. I've been using it since I was little. I thankfully have never had a non-asthmatic say such a thing to me. Though I did have a douchebag gym teacher who gave me a D for not participating in gym class despite the fact he had seen me using my inhaler just because I walked around the field on a pollen-filled day among other times. That damn d kept me from going to prom too. The doctor I had at the time was such a bitch and had her head up her ass because she had athletic asthmatic patients and insisted I could and should be one too and wouldn't give me a note. Like, she didn't expect magical athleticism, but she didn't think I needed a break from gym and that the thirty steps between each floor in my school was enough. She thought that shit would be good for me and that my asthma wasn't an excuse.

My last doctor was more sympathetic, but I still don't think he really got it. Honestly I don't think he really got my Crazy either. And the tea soothes as long as there's steady flow down my throat, otherwise my chest still hurts XD

Unfortunately, I do have several family members who don't get it either. They have a toned down thought process. "Well you don't seem that bad and we're not that bad and you're clearly not doing enough (in our minds) to alleviate these supposed problems, so it must not be that bad. After all, we're learned and have the 'same problems' and got over it/grew out of it and give you suggestions to do the same." That attitude applies both to Crazy and asthma. Meh, chest hurts... I'm not actually wheezing, but it does burn and I am coughing.

 
I just want to say, I have exercise-induced rather than more chronic asthma, brought on by two severe bouts of bronchitis, and my heart goes out to you.

Also, seriously, doctors.  They have doubted that I collapse wheezing after a jog because I'm not wheezing right then, in the office, sitting still, and of course the answer is exercise--except I can't exercise if I can't breathe.  I was a competitive distance runner before my lungs fell apart.  I'm not lazy for Pete's sake.
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Catherine

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Re: Chronic Lung Illness Sufferers
« Reply #6 on: October 18, 2012, 08:59:47 am »
Quote from: Aine Rayne;77008
Well I only wish I had a HEPA filter. I can't afford one and the poor thing would be working overtime since I live with a smoker.

 
I don't have asthma, but my oldest son does. He was diagnosed when he was 4 and has lived with it his whole life. He's 28 now and luckily, his asthma is very well controlled now.

When he was growing up, his biggest trigger was cigarette smoke (second biggest was illness of any kind, even a cold). Even if he walked past someone outside who was smoking, it would trigger him. The smoker in your house needs to take it outside! I mean, it's ridiculous to expect you to live with something like that! I'm not a doctor, but it seems unrealistic to expect your symptoms to improve when you're constantly breathing that stuff in. Honestly, I don't get why someone would be so damned selfish.

(((Aine Rayne)))

veggiewolf

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Re: Chronic Lung Illness Sufferers
« Reply #7 on: October 18, 2012, 09:43:18 am »
Quote from: Aine Rayne;77008
Well I only wish I had a HEPA filter. I can't afford one and the poor thing would be working overtime since I live with a smoker. I'm currently being forced to get a new doctor and now I'm on an HMO plan so I can't even get access to a specialist without shit hoops of referrals and paperwork. And I don't even want to begin thinking about affording my medication, which I'm sure I'll be put on when I get a doctor.
...


With your new HMO, it may be worth jumping through hoops to get a referral to go see a pulmonologist or an allergist.  Both types of specialist will be able to help far better than a GP or internist (IMO, anyway) because they're specifically educated to treat lung disease.

With regard to medications, well, many HMOs have decent prescription plans but if yours doesn't there are programs run by pharma that enable people to get their medications for discounted prices or even free.  An example - I have no prescription coverage on my insurance plan (hospitalization and preventative care only) and I was able to get my Advair for free using a coupon from GSK that covered the total cost.

If you need help navigating your HMO, I work in the pharmaceutical industry and am happy to assist.  Send me a PM. :-)

Also, I second what was said about smoking.  It's exacerbating your condition and the smoker needs to take it outside.

Finally, I'm sure you know this, but even a "minor" asthma attack can lead to hospitalization and/or death.  It's important to be on proper treatment because of this.
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comW

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Re: Chronic Lung Illness Sufferers
« Reply #8 on: October 18, 2012, 10:31:33 am »
Quote from: Shine;77013

But taking albuterol fifteen minutes before physical exertion does usually help. Is that what you normally take?



non-ashmatic chronic lung disorder here. I was prescribed inhlaers for years, and they had no effect, and you wouldn't belive how many times its been treated as ashma
 
fortunatly no bad side effects - I'd need a much larger dose of steroids befor that happened.
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Re: Chronic Lung Illness Sufferers
« Reply #9 on: October 18, 2012, 11:47:13 am »
Quote from: Aine Rayne;77017
I do take albuterol, that is the one constant I get in the medication coaster. I've been using it since I was little. I thankfully have never had a non-asthmatic say such a thing to me. Though I did have a douchebag gym teacher who gave me a D for not participating in gym class despite the fact he had seen me using my inhaler just because I walked around the field on a pollen-filled day among other times. That damn d kept me from going to prom too. The doctor I had at the time was such a bitch and had her head up her ass because she had athletic asthmatic patients and insisted I could and should be one too and wouldn't give me a note. Like, she didn't expect magical athleticism, but she didn't think I needed a break from gym and that the thirty steps between each floor in my school was enough. She thought that shit would be good for me and that my asthma wasn't an excuse.

My last doctor was more sympathetic, but I still don't think he really got it. Honestly I don't think he really got my Crazy either. And the tea soothes as long as there's steady flow down my throat, otherwise my chest still hurts XD

Unfortunately, I do have several family members who don't get it either. They have a toned down thought process. "Well you don't seem that bad and we're not that bad and you're clearly not doing enough (in our minds) to alleviate these supposed problems, so it must not be that bad. After all, we're learned and have the 'same problems' and got over it/grew out of it and give you suggestions to do the same." That attitude applies both to Crazy and asthma. Meh, chest hurts... I'm not actually wheezing, but it does burn and I am coughing.

 
Gym teachers are generally in a league of their own. Talk about complete lack of understanding.

Maybe you'll get lucky enough to get an experienced doctor who's also asthmatic. They're usually a *bit* more sympathetic. Inexperienced doctors who aren't asthmatic seem to like to go by the book and by the book, everyone's pretty much the same. . .

Sorry to hear that some of your family is less than supportive. I think family often doesn't know what to do, so they try to downplay it because they're a bit scared. Or maybe they're just mean. My stepfather was like that. Of course I can't tell what side of the fence your family is playing on. :) I hope at the very least they try not to smoke right beside you. If they do, what has helped me in the past is to pull my shirt collar over my nose. It blocks out some of the smoke or, better yet, offends the smoker enough to get them to move or put the cancer stick out. ;)

It's too bad there isn't a cure for asthma. Or lung disorders in general.
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Shine

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Re: Chronic Lung Illness Sufferers
« Reply #10 on: October 18, 2012, 11:52:20 am »
Quote from: veggiewolf;77041
With your new HMO, it may be worth jumping through hoops to get a referral to go see a pulmonologist or an allergist.  Both types of specialist will be able to help far better than a GP or internist (IMO, anyway) because they're specifically educated to treat lung disease.

With regard to medications, well, many HMOs have decent prescription plans but if yours doesn't there are programs run by pharma that enable people to get their medications for discounted prices or even free.  An example - I have no prescription coverage on my insurance plan (hospitalization and preventative care only) and I was able to get my Advair for free using a coupon from GSK that covered the total cost.

If you need help navigating your HMO, I work in the pharmaceutical industry and am happy to assist.  Send me a PM. :-)

Also, I second what was said about smoking.  It's exacerbating your condition and the smoker needs to take it outside.

Finally, I'm sure you know this, but even a "minor" asthma attack can lead to hospitalization and/or death.  It's important to be on proper treatment because of this.

 
HEARTS AND CAPS LOCK TO GOOD PULMONOLOGISTS.

Regular doctors and interns never got my asthma under control in the least bit. On top of that, they always tried to prescribe medicines that weren't covered under my insurance or didn't work. My pulmonologist is nothing like this. He's terrific.

Uncontrolled or poorly-controlled asthma is scary. I'm keeping my fingers crossed that the OP gets a good doctor ASAP.

I've heard of a company called MedCo that sends most kinds of prescriptions in 3-month batches for a reasonable price, including asthma meds. Know anything about them?
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veggiewolf

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Re: Chronic Lung Illness Sufferers
« Reply #11 on: October 18, 2012, 12:26:30 pm »
Quote from: Shine;77047
...

I've heard of a company called MedCo that sends most kinds of prescriptions in 3-month batches for a reasonable price, including asthma meds. Know anything about them?

 
MedCo is now owned by Express Scripts.  My old insurance used to have an Express Scripts option to get 3 month supplies by mail and it worked out to be cheaper, but every health plan is different.  The question would be - how does the prescription plan for the HMO work and can Express Scripts be used?
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Aine Rayne

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Chronic Lung Illness Sufferers
« Reply #12 on: October 18, 2012, 10:42:27 pm »
Quote from: Catherine;77038
I don't have asthma, but my oldest son does. He was diagnosed when he was 4 and has lived with it his whole life. He's 28 now and luckily, his asthma is very well controlled now.

When he was growing up, his biggest trigger was cigarette smoke (second biggest was illness of any kind, even a cold). Even if he walked past someone outside who was smoking, it would trigger him. The smoker in your house needs to take it outside! I mean, it's ridiculous to expect you to live with something like that! I'm not a doctor, but it seems unrealistic to expect your symptoms to improve when you're constantly breathing that stuff in. Honestly, I don't get why someone would be so damned selfish.

(((Aine Rayne)))

Well, it's her house, she's been smoking for fifty years and she mostly takes it outside now because of my baby nephew.

Quote from: Shine;77046
Gym teachers are generally in a league of their own. Talk about complete lack of understanding.

Maybe you'll get lucky enough to get an experienced doctor who's also asthmatic. They're usually a *bit* more sympathetic. Inexperienced doctors who aren't asthmatic seem to like to go by the book and by the book, everyone's pretty much the same. . .

Sorry to hear that some of your family is less than supportive. I think family often doesn't know what to do, so they try to downplay it because they're a bit scared. Or maybe they're just mean. My stepfather was like that. Of course I can't tell what side of the fence your family is playing on. :) I hope at the very least they try not to smoke right beside you. If they do, what has helped me in the past is to pull my shirt collar over my nose. It blocks out some of the smoke or, better yet, offends the smoker enough to get them to move or put the cancer stick out. ;)

It's too bad there isn't a cure for asthma. Or lung disorders in general.

Family has asthma and therefore don't think it's that deep or think that because I'm not following their directions it must not be that bad or I must want to stay sick.
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Shine

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Re: Chronic Lung Illness Sufferers
« Reply #13 on: October 18, 2012, 11:06:07 pm »
Quote from: Aine Rayne;77121

Family has asthma and therefore don't think it's that deep or think that because I'm not following their directions it must not be that bad or I must want to stay sick.

 
Right. Like you enjoy being short of breath, wheezy, and feeling crappy in general. :mad:

Grrr, everybody's asthma is different. There *are* textbook cases out there, yeah, and just as many non-book cases, too. Ya gotta account for the individual.

I've noticed a percentage of people who have that level of non-sympathy usually had asthma when younger and grew out of it as they aged. Unfortunately, some of us never grow out of it. Some of us even grow INTO our asthma.

Either that, or the non-sympathetic people have asthma that responds well to medication. *sigh* They should feel blessed to be so lucky and should be supportive of those who aren't.
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Aine Rayne

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Chronic Lung Illness Sufferers
« Reply #14 on: October 19, 2012, 12:43:11 am »
Quote from: Shine;77124
Right. Like you enjoy being short of breath, wheezy, and feeling crappy in general. :mad:

Grrr, everybody's asthma is different. There *are* textbook cases out there, yeah, and just as many non-book cases, too. Ya gotta account for the individual.

I've noticed a percentage of people who have that level of non-sympathy usually had asthma when younger and grew out of it as they aged. Unfortunately, some of us never grow out of it. Some of us even grow INTO our asthma.

Either that, or the non-sympathetic people have asthma that responds well to medication. *sigh* They should feel blessed to be so lucky and should be supportive of those who aren't.

Well my dad and grandmother are mild asthmatics and my mom watched her brother grow out of it and is the main one with the attitude I described (especially towards my Crazy.)
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* In Memoriam

Chavi (2006)
Elspeth (2010)
Marilyn (2013)

* Cauldron Staff

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