ShelbyFoister.com – Est. 1981
9Aug/150

Asthma! Do you really understand?

I've been thinking about this post for a while and the truth of it is I'm not sure where to start or even what to say without sounding like I have animosity toward people who have kids without asthma. I don't, but it's obvious that asthma is a foreign concept to people unless they are directly affected by it.

My wife and daughter have asthma, it's a constant struggle in my house even though my wife is good at managing it and making everything seem as normal as possible. The fact is it alters what we do and how we think on a daily basis.

My daughter has had pneumonia 4 or 5 times in her short 3 and a half-year life. Pneumonia takes a very long time to recover from, any additional sickness like the common cold can inflame the scar tissue again and cause a reoccurrence. A single diagnoses of pneumonia means we're doing albuterol breathing treatments every 4 hours of every single day for at least 2 to 3 months. (You think diapers were expensive?) Because of this she is either recovering from pneumonia, has pneumonia or is getting pneumonia constantly. Additionally she is taking two puffs of an inhaled steroid every morning and every night just to stay "controlled." No one knows exactly what would happen if she stopped taking these twice a day steroids, or her allergy medicine and even though we would love desperately to reduce the amount of medicines she is taking we don't want to take the risk.

Before modern medicine pneumonia was one of the top 5 leading causes of death in the united states. Now, pneumonia is still in the top 10.

So what  exactly is Asthma?

The most direct way to explain asthma is this photo:

Credit to: http://www.top10homeremedies.com

 

Story time...

About a week ago I dropped my daughter off at daycare, and as usual she is recovering from pneumonia so her airways are fairly inflamed and I'm already full of anxiety just taking her there. As I'm spooning her cereal into her bowl and getting her settled in a father walks in with his two boys. The two boys sit across from my daughter and one of the boys immediately coughs the nastiest sounding cough. This poor kid had severe dark circles and goopy looking drowsy eyes and didn't even want to move.

I'm trying not to be judgmental about this because if my kid could recover from a common cold like any other kid I would probably just give her an Advil, send her to school and not miss a day of work also. At the time I thought to myself "You fucking asshole... your kid just walked in and within 10 seconds of sitting down coughed right in my kids face." What do you do at this point? Move your kid to another table and try not to offend the father? I won't go into my reaction because that distracts from my point.

Fast forward a week... my daughter got a cold. It got into her chest and every hour or so we have to coax her to cough so that it does not settle into her lungs. We're back to doing albuterol every 4 hours and in addition to that we're giving her prednisone twice a day to keep the inflammation down which helps with making productive coughing.

Removing her from daycare is not an option for us because unfortunately like most modern households we need the two incomes to survive. But I will admit that the conversation comes up weekly and during a particularly bad flare up it's not uncommon for it to come up  daily.

We miss a lot of work... my wife misses weeks at a time and only remains employed because of FMLA which protects individuals if they must take leaves of absence to care for a family member. Once she has used up all of her paid sick time then I try to use as much of mine as I can to fill the gaps. Once mine is used up then she once again will use FMLA to take unpaid leave... we try very hard to be good employees. Both of us take pride in our work and want to be there for our coworkers. I do not want to be "that guy that calls in sick all the time." Sometimes it's impossible to avoid...

There's some common reactions and question that come from people who really don't understand what we're going through so I'll sum up some of them here:

If it's so important to keep her home why don't you sell everything you don't need and downsize to afford it?

Our biggest expense is our home... It's the home we want our daughter to grow up in and in a school zone we are familiar and comfortable with. To downsize on this would be to move to an area we aren't comfortable with. Would you do this?

Oh she just needs to (insert some old wives tale or home remedy here).

Before modern medicine she would have been a statistic. I'm sure countless kids died in the 1800's while their mothers rubbed honey and lavender on their feet and hung them upside down from an apple tree on a Tuesday during a rain storm in april.

Does she really need to do all of those treatments? She seems OK now.

Yes, she does... she seems OK now because 4 hours ago she had a treatment. Albuterol reduces inflammation and makes it much easier for asthmatics to breathe. Additionally, if they're sick then it helps them to cough mucus out of their lungs.

How does my perfume make a difference?

Have you ever sneezed because someone is wearing too much perfume or cologne? When you sneeze or have any kind of allergic reaction to something mucus is released and collected in your airways, which may cause you to sneeze again or cough. For an asthmatic this creates an airway restriction.

I'll stop here, because the point of this is not to shame those that don't understand but to make them aware of what is going on. Asthma is a real thing and it SHAPES  the lives of those that are affected by it. We are an asthma house and even though my wife is probably saying to herself "omg you make this sound so dramatic" there is a very specific segment of the population that thinks about whether or not they will have access to a power outlet at Disney World so that they can plug in their portable nebulizer.

We walk wide circles around smokers standing at the doorways of businesses.

We look for power outlets and look like a band of crazies hunched together in the corner behind the restaurant at Disney with this noisy machine and a small child that is acting very accustomed to this sort of thing.

We tell friends "no" a lot when we are invited to play dates.

We say things like "if you're sick stay home" on our party invites and we're serious about it.

We look like crazy people when we stop in the middle of the store to pat our kids back when she's coughing and say things like "yah girl you got it up good job!" and give her a high-five.

I know this got a little rant heavy at times but I really did not mean for this to become a journal entry. Even though talking about it publicly is therapeutic I'm really more concerned with helping to shed some light on this for people. Most disabilities are obvious... you move out of the way for people in wheel chairs to give them more room. You help a guy on crutches up a ramp or down a ramp. You may help a veteran with only one arm unload his cart at the grocery store despite his protests and claims that he can do it himself.

You can't see my daughters (or my wifes) lungs. It's not obvious that she has anything wrong at all so you don't think twice about staying put and letting us walk through your smoke cloud, or wearing way too much perfume. I hope you're more aware, because we all just want to live in a world where we can breathe...

If this all sounds like your family, please feel free to reach out to talk. If this is the first time you've even heard of this kind of struggle then please feel free to reach out also.

 

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