Thursday, October 08, 2015

The Asthma Dilemma

So my breath is back after my misadventure yesterday.  I can still feel the crud in my chest.  I can still smell the mold and the dust inside my nose, but I can breathe.  Yeah, if I take a deep breath I can feel the crud.  I still get a little tight every few hours or so.  But at least now albuterol gives me the relief I so yearned during the attack.

I really have nothing else constructive to report, I just figured that after my post yesterday I ought to follow it up with an I-feel-better-post.  Okay, so, "I feel better."  

As I noted before, I do not feel sorry for myself.  However, that doesn't mean I don't get frustrated. It's kind of like in politics.  When liberals get their way some conservatives get depressed.  Or when conservatives get their way, some liberals get depressed.  I don't get depressed.  I get mad.  I get angry.  But I don't get depressed about that kind of stuff; stuff you have no control over.  That's how it is when my asthma is acting up.  I don't get depressed about it.  I don't develop a "Oh, woah is me" complex.  I get mad, if I react at all.

Actually, I'm pretty adept at dealing with asthma attacks.  I'm pretty adept at preventing them too.  I know if I don't go around my triggers I can live a relatively normal life with it.  The intervals between episodes can be very long if I avoid my triggers.  The problem lies in the fact that there are things I want to do, love to do, that I know I can't.  

Let me provide an example. Let's say I am a character in a book.  Usually, a chapter goes like this. 
  • Want.  The character wants something
  • Obstacle. Something stands in the way, either physical or psychological.
  • Action. The character does something to try to get around the obstacle.
  • Resolution. The character succeeds or does not succeed.  
So this is me in chapter 555 of my life.
  • Want.  A clean and organized basement
  • Obstacle.  Dust and mold on nearly everything in the basement.  No one else knows what I want done.  No one else is willing to do the work. 
  • Action.  I know I can do it.  So I move the boxes and organizes things the way I want. 
  • Resolution.  Task complete.  Asthma attack is the result.  So that's the cliffhanger, and the reason to read the next chapter. 
Now we are in chapter 556 of my life.
  • Want.  To breathe normal again.
  • Obstacle. My airways are inflamed and I don't seem to get immediate relief from medicine.
  • Action.  To wait it out. To try to find things to occupy my mind with until my breath comes back.  I watch a movie.  I also take albuterol, lots of it.  I take 2-3 benadryl.  I drink a few beers to take the edge off the dyspnea.  
  • Resolution.  My breath comes back slowly over time.  By 2 a.m. I am comfortable enough. I fall asleep.
So now what do I do. You see, that's a dilemma.  My baseball cards are in the basement.  My weights are in the basement.  Do I dare go back down there.  You see, chapter 557 is set up nicely here. You see, I'm frustrated.  

And then there's the frustration of what to do to fix the basement so I can breathe down there.  You see, do I just deal with it.  Or do I try to convince people who don't have asthma, who don't know what it's like, that I need to allergy proof it.  To me this is important. But to people who don't have asthma, it's not important. That's what you call an asthma dilemma.

The asthma dilemma is how you deal with it.  The asthma dilemma is how you deal with how others react, or, more likely, don't react to it.

How do you do the things you enjoy when you know doing them triggers an asthma attack, at least if what you want to do (baseball cards, workout) are in the basement you are allergic to.  The dilemma is how you convince others that money needs to be spend allergy proofing the  basement, or buying an allergy proof house. That's the asthma dilemma. 

A discussion with my son about asthma

So I'm having an asthma attack when my older son Jordan comes home from soccer practice.  I said, "Hi, Jordan, I'm having an asthma attack now."

He said, "Oh, that's not good."  

"Well," I said, "It's my own fault.  I got brave and did something I enjoy in the basement.  Now I must pay the consequences.  That's what it's like having asthma." 

He said something I don't remember what it was.  I said, "If I didn't tell you I was having trouble breathing you'd never know." 

"Yeah," he said, "You look normal." 

I said, "That's a talent I have. I have had this disease so long I just take it in stride. Anyone else was feeling like I do now and they'd be in the emergency room."

He said, "That's a pretty good talent."  

I said, "Is it?"

Yeah!  That was the end of the discussion.  A sort of dry silence filled the air.

Wednesday, October 07, 2015

Asthma Frustration

My plan for today was to finish organizing, cleaning, and decorating my man cave in the basement. It all started out all fine and dandy until I lost my breath. So now I"m sitting on the couch, probably appearing to others like I normally do. They don't have it, so they don't know what it's like. And that's fine with me, I don't want them to know what it's like. 

Okay, so I'm on to treatment #2 now.  My breath has not come back. Let's see if I can explain the feeling. At rest I feel pressure in my chest. In my face I feel the inflammation.  Actually, what I feel in my chest is probably the inflammation too.  It's the allergic response in full gear. My eyes, face, throat, and airways are all inflamed.  It kind of gives me an itchy, burning feeling at rest. 

Okay, so I take in a deep breath, and it comes in all the way, although at about the 1/2 way mark it comes in slow and difficult. This is actually a good asthma attack compared to some I had as a kid when I could only take in half a breath.  However, it feels pretty crappy to say the least.  

Still, my daughter Laney plays on the floor with a ball.  She is tossing it into the air, and smiling as she does so.  My son wants me to look at the game he's playing on the Kindle.  They are completely oblivious to how miserable I feel. I like it that way. 

Interestingly, as I wrote in my post "What it's like to have asthma," my wife failed to react when I told her I was having trouble breathing. Even though I explained to her before what it's like, she doesn't have it, so she forgot. So there's no empathy from her.  In fact, she seemed to be annoyed with me. 

I'm not judging or criticizing her, it's just an observation as an asthmatic.  It's normal for her to not have empathy for me, as she has never been short of breath before, and therefore there is no way for her to even conceive of what it's like for me right now. 

Okay, treatment #3.  I do not feel any better still.  I did take a benadryl, so hopefully it will relieve some of the inflammation soon and help with my breathing.  Usually it works pretty well for asthma attacks like this that are caused by allergies. The problem is I will probably be really tired when they kick it. This will pretty much ruin the rest of my night.

My goal for tonight was to create a collage on my wall with some old baseball cards I found.  I figured that would be a fun way to end my day.  I will have to tackle that project on some other day, perhaps on a day that I didn't decide to clean up the kids dress clothes.  You know, if you have allergic asthma, you probably would be better off just leaving the family room in the basement a mess.  It's better to have a messy basement than not to be able to breath.  However, on the other hand, it does look nice.

I did say to my wife last time this happened.  I was already feeling crappy last Sunday, so I decided to clean the basement.  I became severely dyspneic, kind of like I am now. I was starting to feel panicky (although I looked as cool and calm as I am now, a talent I have), and I said to her, "Yep.  This is what happens when I do something I enjoy."

It's true.  When I do things I enjoy, I have asthma attacks. No, I'm not feeling sorry for myself.  I never feel sorry for myself.  I usually find ways to deal with it, as I'm doing now writing this. Usually these thoughts go through my head and don't get written down, so this is kind of neat for you to be reading this. But still, if you don't have it, even though you are reading this, you won't know what it's really like to have asthma.

Sorry, but if you don't have it, you cannot conceive what it's like.  You can even live with a severe asthmatic like my wife and children do, and you still will have no clue what it's like. It's more than just being short of breath. It's sitting on the couch being on treatment #3 and not one other person in the house even notices.

No one can conceive of the idea that, even if I really want to go into the basement again tonight, I will not be able to do it.  I will be stuck up here. If my wife weren't going to work tonight she'd probably think I was being lazy. Well, I'm not.  I want to do something.  I can't.  I'm stuck in a body that looks normal.  But, as you know now, I can't breathe....

Okay, I'm going for a walk outside to see if that will help.  Fresh air sometimes helps in that way... Cool and calm, my kids singing, I leave the living room...

Back.  Maybe I feel a little better.  Yeah, I must feel better.  Now I'm going through the pissed off phase.  I want to finish my project in the basement. Nope.  Can't do it. I'm gonna have to sit here on the couch until my breath comes back.  And when it does, I will not be able to go into the basement for a 3rd time today.  I can't do that again.

Neat.  My kids play on.  They have no clue how I feel.  Actually, my wife wouldn't either if I hadn't told her. That's one of the things I've learned I have to do as an asthmatic: when I feel bad I have to tell someone. I have to tell the people around me.  I have to say something, even though I feel stupid doing it, because... well, what if I did stop breathing because of my asthma. What if... It has never happened and probably never will... to me, asthma isn't something that will kill me.  It's basically just something that annoys me, and forces me to live a simple life in an allergy free environment.  If only I could avoid brave moments like today and quit going into my basement.

Of course now I'm feeling like crap and am having an adrenaline rush from all that ventolin.  You know what would be nice is if I could just poke one of my sons epi pens into my right thigh.  That would give me my breath back in , oh, about 5 minutes.  Then I'd be good as new.  But I won't do that.  I don't dare.

You know another thing that sucks is I probably shouldn't have a beer tonight, feeling like I do.  In the slim likelihood this doesn't get better and I need to go to the ER, any alcohol buzz would make the decision to go all that harder.  Plus alcohol dries out the lungs, and that could make things worse for me. However, on the other hand, the alcohol might also take away some of the feeling of air hunger I'm feeling about now.

I will report back once my breath comes back.  6:28 p.m.  I will be back.  

Saturday, September 26, 2015

How I conquered Exercise Induced Asthma

Random boy pufing on inhaler while playing football.
To say I never exercised as a kid because of my asthma is not to speak the whole truth.  A more accurate statement would be to say that I rarely exercised when my asthma was acting up.  And considering I had brittle asthma as a child, there were many times I was unable to exercise with it.  Now I exercise every day, so what changed? 

Essentially, I conquered exercise induced asthma  (EIA), or what is now referred to as exercise induced bronchospasm (EIB). 

Brittle Asthma.  During teenage years airways increase in scope and size with the rest of your body.  So my airways are now bigger and less brittle.  Now, this does not mean they are less sensitive.  It just means when my airways spasm, there is more room than there once was. So now, when I'm exposed to a potential asthma trigger, it doesn't close off my airways the way it once did.  

Better Medicine.  The medicines available today are much better than when I was a kid.  For instance, most modern inhaled corticosteroids are stronger and last longer than previous ones. The same is true of bronchodilators.  Not only that, combination medicines make it so you can take all your inhalers in one or two puffs a day.  

Better Compliance.  Better medicines have resulted in better compliance.  Or, worded another way, the fact that most modern medicines only need to be taken once or twice a day has made it easy to stay compliant with a medicine regime.  Basically, I take my medicine when I brush my teeth.  Puff and then Brush.  This is a far easier routine than 8 puffs 8 times a day Azmacort, or three remembering to take my theophylline pill at 6 a.m., 2 p.m. and 10 p.m.  

Better Wisdom.  Back in the 1970 it was known that inhaled corticosteroids worked to control asthma.  However, doctors were still concerned about the side effects.  So, as I was being discharged from yet another hospital admission for asthma, my doctor would write the following: "Have this boy take his Vancerin inhaler for a week or two until he feels better, then stop it."  You see, one of the reasons I had such poor asthma control was because I wasn't taking the medicine meant to prevent it.  Thankfully, later studies showed that not only do inhaled corticosteroids work, they are very safe. 

Doctors.  Back in the 1980s regional physicians were left to learn about asthma on their own, and were often left with incomplete wisdom.  This was why I had to be shipped to Denver in 1985 so that I could learn how to gain control of my asthma.  Today, asthma guidelines, and the Internet, make it so regional doctors are kept up to date on the latest asthma wisdom to help best help asthmatics like me. 

Bottom Line.  Even as recently as 1997 when I was forced to get a medical excuse to get out of a college gym class I had to take to earn my Associate's Degree in Respiratory Therapy.  Just since that time I have tackled my EIB to the point that I can now exercise whenever I want. This is amazing in that it shows how 

Saturday, September 19, 2015

The impact of asthma on parenting

You might think that on a normal day asthma has little impact on raising kids, but it does, and it has a big impact. You may not notice it. You may not see it. But asthma has an impact on both how I parent, and how my kids perceive me as a parent. Allow me to explain.  
And you also have to add into the equation that asthma usually is not pure, meaning that most asthmatics have other ailments that go with it.  In my case I have allergic asthma. So, to understand how asthma impacts parenting you have to look at this from a few different angles.
  1. A good asthma day with no asthma and no allergy symptoms.
  2. A day with just allergy symptoms.
  3. A day with just asthma symptoms.
  4. A day with both allergy and asthma symptoms.
1.  Even on a good day my kids will never be exposed to dogs, cats, or pets of any kind.  Even on a good day my kids will not learn how to hunt, nor shoot a gun by their dad.  Even on a good day my kids will not learn how to do handy work around the home by their dad.  These are all things that must be avoided. However, in exchange of this my kids are exposed to a dad with a college degree who is a good philosopher and writer. 

2.  I have written before that allergies are far worse than asthma, mainly because there is treatment for asthma attacks and nothing you can do for allergies beyond the usual allergy and cold remedies. Today, for example, I woke up with inflammatory markers flowing through my body, and they are causing the tissues along my entire respiratory tract to become inflamed.  They are also causing my face and head to feel stuffy and itchy.  This causes anxiety like you wouldn't believe. My nose is stuffy and running. My eyes itch like crazy.  I head itches so bad I feel like I could pull my hair out.  My chest feels itchy and tight, as the inflammatory markers also trigger asthma. Yet despite all of this, I still have to deal with the usual things a parent of a 17, 12, 7, and 5 you old must deal with.  They can't see allergies. So they don't know it's there. And even if they could see it, my 5 and 7 year old couldn't care less.  When they want to eat, it's my job to feed them.  When they need to go to school, it's my job to take them.  It doesn't matter how uncomfortable I feel.  Add on top of this that the house needs to be clean, and due to my condition I don't feel like doing it. Add on top of that the fact I can't sleep because of this conundrum.  Like I said, I'd much rather have an asthma attack than deal with allergies. Bottom line, when an allergy attack is on full tilt it's very hard to be patient with my kids. It's usually during these moments that I'm most likely to lose it with them.  On the few occasions I do blow up at them I feel guilty because they don't know what's going on inside my body. Even if I explain it they cannot fathom it because they do not have it.  

3.  A day with just asthma is not very common for me, although it does happen.  Usually it involves a virus, such as a common cold.  I get to the point I can't really help much around the house.  However, since asthma, unlike a broken leg with its cast and all, cannot be seen by those who do not have it, it's nearly impossible to conceive of what it's like.  So, here again, we run into the conundrum of others not knowing that you feel like you can't breathe.  So, if you are just sitting around, they think you are the lazy one.  They think you are just making excuses. And, to be honest, sometimes I go to far and do more than I should because I care so much how I'm perceived.  This is because I'm competitive. I want my kids to learn that even if you have a disease like asthma you can and should still function.  Yet if the asthma continues despite efforts to make it better, anxiety ensues and 

4. If both allergies and asthma are bothering me it's lights out for me.  I'm about useless as both a husband and a dad.  It's on these days I'm only good for my brain.  This kind of reminds me of a quote from Henry Ford, who said, "The only reason I have a body is to carry my brain around."  That's how I feel when both are plaguing me. 

Now, as noted, there are some good medicines for controlling asthma. So, for the most part, asthma is not a problem. Still, allergies plague me year round.  There's tree pollen in the spring, ragweed pollen in the summer and fall, and house dustmites in the basement that plague me in the winter.  So, trying to balance all this with being a parent is a conundrum. 

Monday, September 14, 2015

Patient Apathy Syndrome

People who live with chronic diseases develop a unique perspective of life that people who are generally healthy cannot fathom.  For one thing, they see doctors with increased frequency than healthy people do, and so they develop patient apathy syndrome (PAS).  

My great uncle Mickey once said to me, "I haven't gone to the doctor in a while because I needed a break. If I don't see them they can't tell me there's something else wrong with me." 

That quote pretty much describes the apathetic patient to a tee.  They develop a lack of feeling, emotion, interest, and concern about their health.  It's not so much that they don't care, it's more that they just decide that they will just accept their fate as it comes. 

If you have a disease like asthma, you will inevitably have to give in and see your doctor.  You will need to do this in order to get your prescriptions renewed.  So you might as well see your doctor at least once a year. 

To give a personal example, a few years ago my asthma got worse during the summer months.  So I made an unscheduled visit.  He put me on steroids and made me see him once again in a week.  Then I saw him every 2-3 months, and eventually every six months.  Of course all this time I still had to see my eye doctor and dentist.  So I got tired of it all, and quit caring. I quit seeing all my doctors, including my dentist.  I had developed PAS. 

Actually, I first started showing signs of PAS when I started college in 1988.  I was 18, had dealt with asthma my entire life, was in and out of hospitals and doctors offices so much I was sick of it.  In fact, in 1985 I spent half a year in a hospital, and saw more doctors and had more procedures done than more people do in a lifetime. 

Like I said, when you have asthma you can't really go more than a year without seeing a doctor.  But I had one doctor who was so good to me he would just renew my prescriptions without seeing me. So I went seven years, between 1998 and 2005, without seeing him.  As a matter of fact, I was absent so long his secretary made me file out forms like I was a new patient. 

Between 1993 and 2000 I never saw a dentist.  Then I met my wife and she made me go.  It was neat to learn that I went seven years without getting my teeth professionally cleaned and I never had one cavity.  But I was lucky.  But I didn't care either.  If I had a cavity I didn't know about it, so I didn't worry about it.  I was an apathetic patient. 

One you develop apathy it never goes away, so it has to be treated.  The best treatment is to have a good spouse or friend who schedules your appointments for you and makes you go.  My wife does a great job of taking care of me.  But if she gets busy and forgets, then I don't remind her.  You see, that's the PAS not talking.  

After having trouble with my blood pressure and asthma in the summer of 2013, and having surgery on my eye, and having my gallbladder taken out, and spending quality time with doctors, I decided to take 2014 off from seeing a doctor.  Actually, you don't decide to do this, it just happens.  And if you have PAS, you very much enjoy time away from your doctor.  

Yet then you call your asthma doctor to get your prescriptions refilled, and his secretary tells you that you must come in for a check up.  So you set an appointment, and, after the doctor checks you over, he says, "I would like to see you in six months."  Then the cycle begins again.  

So, even if I wanted to, I couldn't go long without seeing a doctor. But there are others who have PAS way worse than me.  I at least have some good medicines, that if I take them regularly, my asthma is well controlled. But there are many people who need to see their doctors several times a year, and I would imagine they get sick of it, like I do sometimes, like my Uncle Mickey did. 

Further reading:

Saturday, September 12, 2015

What’s it like to have asthma?

Breathing through a straw may simulate shortness of breath,
but it will not reveal what it's like to have asthma.
So what’s it like to have asthma, anyway? I have never had anyone ask me that question. At the same time, however, I have tried to explain it to family members and friends, and it never seems to do any good. So what’s it like to have asthma?

I am 45 years old, and I grew up with it. I never felt sorry for myself, mainly because I never had a chance to live without it. To me, normal is living with it. Normal is seeking options to live well with it. Normal is making sacrifices to be a gallant asthmatic, sacrifices people with normal lungs never have to make. I simply learned to deal with it.

What I find interesting is not so much how I deal with it, but how others deal with it. How do non asthmatics react, or not react, to people with asthma? How do non-asthmatics perceive asthma? That, to me, is the more interesting aspect of asthma.

My close friends know I have it, but they don’t know what it’s like. I know this because I live with it and they don’t. You can breathe through a straw, but that’s not the same. You can’t manufacture what it’s like to live with asthma. You can live with someone with asthma your whole life, even witness that person suffer, but that’s not the same either. So, if you don’t have it, you can’t understand what it’s like to have asthma.

Think of it this way: when I’m feeling asthma symptoms, you can’t see it. So you have no idea. I mean, if I broke my leg, you’d see I’m limping; you’d see the cast. But you can’t see asthma. For this reason, you cannot grasp the concept. In fact, this is one of the five reasons why there is still no cure for asthma even though it was described in ancient Greece.

There are some people close to me I have explained what it’s like to have asthma hundreds of times, but they don’t have it so they can’t grasp the concept. They might understand for a while, but then they forget. Here, let me give you one example.

As kids, my brothers built forts in the basement using blankets. They pressured me to join in on the fun, so I caved and started crawling among the dustmites. It didn’t take long for my asthma to strike, and I was forced to quit. My brothers were initially upset, but understood once I explained how I felt.

The next day they again build a fort and expect me to play with them. I decide to watch TV instead. They are frustrated with me, and I again cave. The asthma strikes just like last time, and I quit. I explain why I quit, and they understand. Once I’m feeling better they want me to play some more. You see, because they don’t have it they don’t learn. They can’t grasp the concept.

This is not a criticism, it’s an observation as an asthmatic. It’s human nature for my brothers to react the way they did.

Many times when I was a kid my dad would have us boys help haul wood. When I did it the asthma would strike. Sometimes my dad would even take me to the emergency room. My dad saw what it’s like, and he’d understand.  A week later he'd expect me to joint my brothers in helping haul wood.  You see, he doesn't have it, so he forgets.

One year my dad took me to hunting camp and I have an asthma attack.  So he leaves the fun to drive me all the way home.  The next year he talked as though I was going back to camp.  You see, he doesn't have it, so, so he forgets.  Because I want to be around my dad, to be one of the guys, I cave and go.

Sometimes I do fine at camp, but occasionally I have to go home.  I explain why I'm leaving. My dad and brothers understand.  But then they expect me to come back.  You see, they don't have it so they forget. They expect me to be one of the guys, something I want too.

But since I live with it, I am the one who has to prepare my lungs for it, and I"m the one taking the risk, not them.

But they don't see that.  What they see is me there being one of the guys.  If my asthma acts up they don't feel it, they don't see it. So they don't know if I don't tell them. If I don't explain what it's like, they don't know.

And that's why, when I'm having trouble, I say, "I'm having an asthma attack."  I have to do that.  If I don't say it, they won't know. And, further, I sometimes get the feeling that the people I tell this to, the people of whom I share how I feel, think I'm making excuses to get out of doing something.  Sometimes they say this to me.

Sometimes they say it by their actions. Sometimes my brothers would tease me for sitting on the couch instead of playing football when wood smoke was polluting the air.  One of my brothers once said, "What a useless peace of skin you are."

This is not a criticism, it's an observation as an asthmatic. It’s human nature for dad’s to want their kids to help with chores and not to make excuses. It's human nature for dads and brothers to want their brother to join in on the fun. However, there are side affects to actions.

When I felt I was being a bother, I'd keep how I felt to myself.  Even when I knew I shouldn't, I would go with dad to hunting camp, or I would haul wood, or I would play football in the smoke filled air.  And, more often than not, I would suffer the consequences thereof.

Now I make it clear to those around me that I'm having trouble with my asthma.  Because they cannot see it, I feel I must tell someone just in case.  I do not do it for empathy, which is good because a rarely receive empathy.

I think it's natural for people who don't have asthma to think everyone else is normal too.  And I think it's safe to say, that most people with asthma yearn to be normal.  I know I do.

This might explain why I continue to go to hunting camp even though I’ve had many asthma attacks there, and why my dad and brothers just assume I will attend, even though they should know what might happen. But they don’t, because they forget, because they don’t have it.

I go because I want to be normal, and they expect me to be there because they forget. This happens because I have it and they don’t. They cannot grasp the concept. Unlike a broken leg, they cannot visualize asthma. So they cannot fathom what it is like, even when I explain it.

This might explain why I continue to go into my basement and clean, even though I know this will result in an asthma attack.  It's that quest to be normal, even though I'm not normal, at least as far as my lungs are concerned.

You see, asthma is more than just being short of breath. This is because asthma is about preventing yourself from becoming short of breath.  It's about avoiding asthma triggers. It's about not going into someones home if they smoke, or have cats, or dogs, or mold in their basement.  It's about taking medicine every day of your life.  It's about planning ahead when you leave the home to make sure you have what you need handy in case you need it to get your breath back.  

You see, asthma is more than just being short of breath.  It's living with the risk that you might get short of breath.  It's also living with the desire to be normal, and knowing others think you are when, in actuality, you are not.  It's about trying to get people to understand what it's like, even though you know they cannot conceive of what it's like, because they don't have it.

Now you know what it’s like to have asthma, sort of. It’s more than just learning to deal with asthma attacks, it’s seeking options to live better with it, and it’s learning how to prevent attacks. It’s learning to deal with how others react, or don’t react, to it.

So, what’s it like to have asthma?