Wednesday, May 24, 2017

Asthma Awareness Month: My Life with Severe Chronic Asthma

http://www.aafa.org/page/asthma-and-allergy-awareness-month.aspx

This is a long post, so get comfy. :) Every year, the Asthma and Allergy Foundation of America or AAFA declares May to be "National Asthma and Allergy Awareness Month." Spring in the US is a prime suffering time for people with asthma and/or allergies; right now trees are pollinating where I live and it's not fun.


While I have both allergies and asthma, this post will focus on asthma, though they are related and interconnected. Asthma, like the flu or cancer, is actually an umbrella term for a constellation of
conditions classified as asthma. Did you know there are different types of asthma? Did you know that one person can have more than one sub-type of asthma? Did you know that asthma does not go away? All those people who say they outgrew their childhood asthma are mistaken; their asthma is in remission, it could still flare up at any time. Asthma does not 'clear up' nor is there a cure. There are ways to manage it and drugs to treat it and to control it, but there's not a cure.

 My asthma is adult onset; it started in my early 20s though I wasn't diagnosed until my mid to late 20s. Initially, I was diagnosed with mild asthma; I had a persistent, chronic dry cough. That was it, my only symptom. When my then-doctor first said I had asthma, I thought he was kidding. I didn't wheeze and I didn't get short of breath. But, turns out I have what's called cough-variant asthma. Unlike classic asthma, I rarely wheeze, and when I do, I end up being admitted to the hospital. My primary symptom is coughing, uncontrollable spasms of dry coughing. These days, I also get short of breath and my chest tightens up, but I still don't wheeze. That lack of wheezing sometimes comes back to haunt me. So many friends, relatives, co-workers, and acquaintances don't believe I'm having an attack because they don't hear me wheezing. I've even had to argue with an ER doctor who was ignorant of cough-variant asthma and who tried to insist that I wasn't having an asthma attack because he heard no wheezing in my lungs. It's awfully difficult to argue when you can barely breathe, much less talk. I was not a happy patient.

These days my asthma is somewhat controlled but at my worst, I would miss days or weeks at a time of work. Quite honestly, the only reason I kept my job was the Americans with Disabilities Act. They had to make reasonable accommodations, which they did. I didn't dare set foot outside of my apartment without my cell phone and rescue inhaler. I couldn't do down to the first floor to check my mail without them or take out the trash or unload the groceries from my car. When bringing up groceries, I would take up the perishables and refrigerator/ freezer foods first, sit and catch my breath, put those groceries away, sit and catch my breath, go downstairs for the next load, stand and catch my breath, go upstairs, catch my breath, put the groceries away, catch my breath, lather, rinse, repeat. Even now, though my asthma is better, I still have to carefully plan my trips up and downstairs. When I go for a walk outside, I still take my phone and rescue inhaler. Mostly these days that's paranoia but still, I'd rather have them and not need them, than need them and not have them. 

Thanks to my allerigies, my windows are rarely open, and fresh air is not always healthy for me. I am allergic to most of Mother Nature and my allergies trigger my asthma. A few weeks ago, the tree pollen levels were extremely high. I had my windows closed but I still had to go outside to get to and from work and as I am a teacher, we were outside every day. Not surprisingly, I had an asthma flare up. It was relatively mild, I didn't even miss any work, but I needed to take steroids to clear it up. In all, it lasted about 2.5 weeks. Like I said, mild. The bad ones? Oh, they're 4 -  8 weeks and sometimes require more than one round of steroids. If there's also a respiratory infection, then an antibiotic is called for. This recent bout was just straight up asthma, no active infection so no antibiotic needed.

Asthma involves a chronic, underlying inflammation of the lungs. Research has shown that certain antibiotics are particularly helpful at treating that inflammation. When your asthma flares up ie you have an attack, that inflammation has morphed from underlying to active. Sadly, a few years ago, I developed an allergy to the antibiotic that is the best at treating that infection. I'm also allergic to other antibiotics so I am hyper-alert to any sign of possible infection because I have so few options now to treat it. Respiratory infections are one of my many asthma triggers, and that includes colds. So, I am one of those annoying people who, at the first sign of a cold, starts babying herself, because I really, really dislike ambulance rides, ER visits, and hospital stays. It's been almost 5 years since my last ER visit and it's been 5.5 years since my last hospitalization. I'd like to keep that streak going.

 Earlier, I mentioned multiple types of asthma and I've mentioned a couple of mine. I have a laundry list of asthma types: allergic asthma, cough-variant asthma, exercise induced asthma, infectious asthma (not the correct term but my term for asthma brought on by a respiratory infection), severe chronic asthma, and I think I'm forgetting 1 or 2 types. It's hard to keep track of them all.

Scents often trigger my asthma - perfumes, scented candles or potpourri, room fresheners, etc. There are some stores, such as candle shops, that I can't go into, and other stores have aisles that I have to avoid. I also have to be careful of products that I use. Oh, and humidity. Humidity is not my friend. My lungs are very sensitive to it, and between the humidity and pollen, my windows are shut and the A/C on from now through the end of September, early October, after the goldenrod and ragweed have died out. Then I have a week or two where I can have my windows open before I have to shut them due to the cold temps. Living with asthma takes a lot of planning, and making adjustments to the way you live. And a lot of medicine. I have 3 daily inhalers for keeping the asthma under control and preventing asthma flares, my rescue inhaler for attacks and flare ups, a nebulizer for flare ups, and several daily preventative pills for my asthma. Then there's all the allergy medicine for the allergies. I've also done shots, both allergy shots and asthma shots. Yes, the latter is a real thing. Sadly for me, the allergy shots resulted in an asthma attack bad enough to land me in the hospital, and I developed an allergy to the asthma shots. Which is part of why I'm considered to have severe asthma: it's not responsive to medication, and it's not well-controlled. These days, it's well enough controlled that my doctor has made noises about downgrading me to moderate chronic asthma instead of severe chronic asthma.

See the picture down below? One of my asthma doctors (I have 2 different teams of asthma doctors) has this lung model in her office. It shows a normal lung and then a lung with mild asthma, a lung with moderate asthma, and a lung with severe asthma. That would be the ugly purple one (purple because of insufficient oxygen) with all the lovely mucus. That is what my lungs look like. Note how much smaller the airway is compared to the others. Is it any wonder I get short of breath? Now imagine what those airways look like when they're irritated and there's an attack or flare up going on, how much narrower they get. Yeah, not a pretty picture is it?


Asthma Awareness Month, My Life with Severe Chronic Asthma, Bea's Book Nook

So, now you know a little more about asthma, and a little more about me. Someday I will do a ranty post on books, tv shows, and movies, and everything that they get wrong in depicting asthma. And the majority of them get pretty much everything wrong.

Have a question? Ask in the comments and I'll do my best to answer.

Some of my fave sites about asthma:

American Lung Association
Asthma and Allergy Foundation of America
Asthma.Net 
Respiratory Therapy Cave
 

10 comments:

  1. I feel like I could have written this post myself. I also started having symptoms in my early twenties but wasn't diagnosed until a couple years later when I was pregnant with my 2nd son. It's nice to meet someone who understands.

    Stopping by from the #getsocial17 blog hop.
    ((Hugs))

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    1. It is good to find someone who understands! I hope your asthma and health are in control. Thanks for visiting. :)

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  2. Great post. Thanks for sharing about your experience. #GetSocial17

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  3. This is a really great and informative post because many don't take asthma as a serious condition. It is. I have family members with it. Thanks so much for taking the time to share more details on your experiences, and hope everything is under control for you. Hugs...RO

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    1. So true Ro, and it drives me nuts. Not all asthma is serious but it can be, and it can deteriorate, as mine did.

      Thanks for visiting!

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  4. This was really interesting to read I don't suffer from asthma but my mother does and I know she will appreciate reading a post so similar to her own journey so happy I can pass it along to her #getsocial17

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    1. I'm glad people are finding the post informative. I hope your mother does too and best wishes to her with her asthma!

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  5. I never knew cough variant asthma is a thing. Thanks for sharing your experience in this very informative post!

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    1. A lot of people, including medical professionals, are unfamiliar with it. I'm glad you found the post informative.

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Thanks for taking the time to comment. I enjoy hearing from my readers. Let's talk!