My breathing problems affect my life on a daily basis. Every morning when I wake up I take a handful of pills and puffs off inhalers. I track peakflow numbers and sometimes take note of my oxygen saturation. I must pay attention to my body and symptoms in an attempt to catch any flare up, attack or exacerbation before it gets bad. I have to avoid smoke. I can’t hang out around cats. I have to stay out of musty/moldy buildings. I have to limit my activity in extreme temperatures. I must pay attention to the weather. I must manage my stress levels. I can’t let myself become too worn out or tired.
If I fail to stay on track with these things and others things can quickly go downhill for me. I may not notice right away, but the longer I wait the worse it gets. My rate of inhalation increases. I may breathe shallowly. I don’t always breathe with my abdomen well. I over-utilize my auxiliary muscles to breathe. I act irritated about everything. I become sluggish and less responsive. I slouch. I become still. I quit talking and start using other means of communication. Oh yeah, and I can become irritable like a 3 year old who desperately needs a nap.
I’ve snapped at my wife, yelled at my daughter, blown people off, acted rude and have probably looked like an idiot at times. I don’t like being this way and don’t try to act this way. It’s just what happens sometimes when I can’t keep a lid on it anymore. That stabbing pain every time I inhale or the constant struggle just to appear like I’m breathing normally without gasping for air in the middle of a meeting. It can be rough sometimes. I haven’t had a day where I’ve felt great since 2005 or so. Invisible diseases are tough.
Did you know 9 people die of asthma every day in the U.S.? Here are a bunch of asthma stats from AAAAI. I came across this link while catching the latest at My Life as an Asthma Mom.
Do any of you have trouble breathing on airplanes? I know if I will have trouble as soon as they shut the door and I start breathing the nasty, recycled air. On top of that you have an insane amount of dust and dust mites, smells from fellow passengers, cramped spaces, hot and stuffy when sitting on the tarmac in July, cabin pressure isn’t always great and fellow passengers hacking and coughing.
Sounds like a great environment for a severe asthmatic with severe allergies, right? I’m going to be flying in the near future and have been thinking about how to make sure I stay “ok.” I was thinking about maybe wearing a mask. I’ve always heard nothing paper/cloth you buy works very well because it doesn’t seal to your face. I emailed one of my lung docs who confirmed this for me in about 5 minutes. Doesn’t seem worth it to go buy something, get stared at for 3 hrs and have it not be effective. Probably my best bet is to drink lots of water, stay hydrated, and rinse my sinuses out as soon as I get to the hotel. Does anyone have any good tips for avoiding bad breathing episodes on planes?
A lot of things have been happening this past month
- I had several asthma attacks due to over exerting myself in the snow outside in sub-zero temperatures
- My prednisone in-take is finally back down to 5mg again
- I’m finally starting to lose some water weight from the lower prednisone dose
- I’m not feeling great, but also not feeling awful every day
- We have a new kid in the house
- Philip Seymour Hoffman died
- I heard I might get off the prednisone in 6 to 12 months
- Jimmy Fallon finally kicked Leno out
While I’ve always had at least moderate asthma, there were always a few things that separated me from those with serious asthma problems. Prednisone was something I had to take every so often, but never longer than a week, two at the most. Last year I did a taper or two and then have basically been on it since late May. While it drives me nuts and has some unpleasant side effects, I strongly believe it’s keeping helping me breathe better and I’d rather take these pills every day than end up in the ER on a regular basis like I was doing just a few months ago. I know some people who have been on prednisone for years and can’t really relate to that. There’s a good chance I’ll be on these steroids for a while, but at lest there’s a chance I can stop taking them before 2015.
Exercise and activity levels:
You never quite understand exactly what you have until you don’t have it anymore. I’ve heard this statement so many times, but it’s never rang truer this past year.
- I used to park half a mile away from my building at work and do the one mile round trip 1-3x a day.
- I never had to consider just how far away something was on campus before deciding to walk, catch the shuttle, drive or not go.
- I have to carry a man-purse with all my medical necessities everywhere I go.
- At some point in time, every day, I feel kind of awful.
- I try to make plans but often have to cancel them.
I’m trying to walk around as much as possible and not worry too much about doing anything heavy duty. I think Liz enjoys yelling at me whenever I try to do anything outside. Last week my local lung doc told me to stop breathing the cold air, so I guess I should probably listen. Fortunately Spring is on its way so as long as allergies don’t kill me, I’ll be able to start walking outside more as well.
Yes, we have a new baby in the house. I recently listed off a list of possible nicknames for the little dude, but Liz is calling him Neville on the internets so it seems I should too. Chuck has been great. She’s very helpful in an appropriate way without bugging or pestering the little guy. He’s pretty chill and Dude-like, which we appreciate. He’s also not up every hour all night long so we have been getting some sleep. While there is a certain amount of stress with taking care of a new baby, the worst is getting busy and forgetting to take my medicine, which doesn’t help at the end of the day when I sometimes crash out of nowhere.
It’s hard to stay mad at him too long for forgetting to take my meds. The kid already loves beards. THE KID LOVES BEARDS. He also likes taking it easy and folding his arms like he’s in a 90s boy band.
It was a real shock for me to learn Philip Seymour Hoffman died. The New York Times posted the story and I learned about it a mere three minutes later. He was truly one of the few great actors of his generation. We’ve tried to come up with other actors who are at the same level he was…it was hard to come up with a list of names. I haven’t been affected this strongly from a celebrity dying since Heath Ledger died, only Hoffman passing is a much bigger deal. It’s weird to think Jackie Treehorn and Brandt are no longer with us. I can’t even imagine what kind of roles and performances could have come out of Hoffman in the next 20+ years.
When suffering long-term from an illness, one can easily becomes discouraged and depressed. There are activities you’re not able to do anymore, places you can’t visit, jobs you can’t perform and maybe even people you cannot see. I don’t see myself as getting too down in the dumps, but there are certainly times when I’m in a bit of a funk. I have a group of online friends who also suffer from severe asthma. We often try to encourage each other whenever one of the group is down.
Today I went to the dentist. I tend to see a dentist every five years or so and for some reason they always exclaim how awesome my teeth are. They’re even surprised with the amount of prednisone I take and the insane amount of inhaler puffs/neb treatments I use as well. I’m not sure what I do other than brush my teeth every day and drink a lot of water. I also drink an ill-advised amount of Mountain Dew, rarely floss and am not consciously maintaining my chompers. To date I’ve never had a cavity and have never had a bad dentist experience. This is something I should really be celebrating. A local friend of mine just recently had an infection in his jaw and had to get a bunch of teeth pulled combined with a hospital admission.
When I really stop to think, I have a lot of good things going for me. I have a great family, amazing friends, I can cook, I have a sweet film collection, I’m employed, I have health insurance, the dentist says my teeth are awesome, I got free Taco Bell for lunch today with TWO MOUNTAIN DEWS and I can grow a pretty decent beard. My respiratory system may not be the greatest, but I think all the good far outweighs the bad.
This month we’ve been busy getting ready for kid #2 to enter the world. At times I may mention “Chuck” in reference to my daughter. That’s not her real name in case you were wondering. Working on codename for kid number two. Ideas include Hopscotch, Machete and Chalupa Batman. Feel free to vote. It may or may not affect the decision.
So…nesting. If you have been pregnant or have lived with a pregnant lady, been around one, etc – you probably know what I’m talking about. Before Chuck was born I’d come home from work to find Liz had re-arranged another room in the house. I’m not talking about scooting a few items around. I’m talking about moving book cases and steel shelves along with everything that was on them from one end of the apartment to the other. I’ve been told there’s an extremely strong, compelling feeling it just has to be done. While Liz has been doing her cleaning and prepping in the house, it seems as though I’ve been doing similar, silly things outside in this ridiculously cold weather, which isn’t good for my lungs.
In the past few weeks I’ve shoveled snow, moved fallen branches and have attempted to push cars stuck in the driveway three times with only one failed attempt. All of this in sub-zero temperatures and not wearing a scarf or any kind of facemask. Last Friday was the last of these silly feats of strength where I was shoveling snow and pushing my two-ton car while Liz was in the driver’s seat. It took about 30 minutes, but we got the car into the garage so it wouldn’t turn into a major snow drift. I thought I might not be able to walk back into the house, but I did and fortunately avoided an ER trip.
The thing is, this stuff has to be done and there’s not really anyone else to do it. Maybe this is what nesting is all about? The good news is I have tons of prednisone at home so I can always alter my dose/taper and get myself back on track without having to seek help or go see a doctor. I’m also much better than I was 4-5 months ago so doing a treatment or using an inhaler seems to result in me feeling at least somewhat better. Back when I was nebbing 8-10x a day I was just always feeling awful.
So any day now we’ll be the parents of two kids instead of one. I have no idea what that’ll be like, but I’m sure we’ll figure it out. We figured out how to handle one kid.
This week I had to call up my lung doc to get the prednisone refilled. When I picked it up the next day at the pharmacy I noticed it has 11 refills between now and Jan 2015. This either means I’m on the stuff for a lot longer than I want or he’s just tired of the refills. I’m pretty sure I’m just going to be on it for a while and even though I heartily dislike popping these particular pills every day, it’s a better alternative than trips to the hospital every few weeks.
Last year I was told I basically had three options:
- Become steroid dependent
- Look into bronchial thermoplasty
- Go visit an asthma center and get a full pulmonary diagnosis
Since then I’ve started SARP and have been on prednisone for months. The good news is I’m at work most of the time and can walk around without feeling horrifically awful. I still have the occasional setback, but I haven’t been to an ER/ED for almost three months. I don’t spend all my time in bed or lying down like I used to. I’ve been able to socialize a bit, cook food I want to eat and do random things here and there. While I don’t see myself being magically better any time soon, I am seeing very slow and gradual progress towards being not so chronically ill. I’m really hoping to make some strides this winter and stay away from flu/pneumonia in order to not be knocked off my feet when allergy season starts up again.
…is probably the most stupid thing I’ve done so far this year. Many of you experienced the snowpocalypse that encompassed a major portion of the country last week. We had -20F to -40F windchills and on the slightly warmer day I felt compelled to do a little shoveling since our country driveway was knee-deep and pregnant Liz isn’t supposed to be exerting herself. We finally found someone who could come out and plow a path who also knew how to not scrape all the gravel off into the grass. While this was occurring I, for some reason, felt the need to clear some fallen branches, direct the plow dude where to go and clear off the sidewalk.
Like most stupid decisions, it didn’t seem too bad until I was about 15 minutes into it and then decided I needed to be done. The next two days were spent wheezing, coughing, and Liz reminding me what a stupid decision that was. Fortunately I’m on the mend now. I’m tapering down on the never-ending prednisone and we’re eagerly awaiting kid #2 who’s due any day now.
The drug I love to hate…
…that would be a picture of most of the prednisone bottles from May 2013 through December 2013, and it doesn’t include all the IV steroids and kenalog shots I also received. I’ve been on many, many prednisone tapers in the past 20-odd years, but I’ve never been on corticosteroids for this length of time. While it’s one of the standard drugs doctors love to prescribe for asthmatics, and it generally works quite well, the side effects can be quite awful. In the past I’ve mostly dealt with insomnia and loss of appetite but this summer/fall I also experienced:
- increased hunger
- extreme cold-sensitivity in my teeth
- high blood pressure
- joint pain
- muscle cramps
- muscle weakness
- water retention
- weight gain
- puffy face
- large purple stretch marks around my abdomen
- swollen hands and feet
- mood changes/irritability
These aren’t all the side-effects but they were the most prominent ones. Some of them point to Cushing’s Syndrome, but I never really discussed that with my doctors. The worst has probably been the 30lbs I gained and have had a hell of a time losing. People perceived as “fat” get shamed for all kinds of inappropriate reasons, but has anyone ever considered health conditions? Asthma is one of those things that can easily lead to weight gain from medication and the inability to exercise. Unless you stay on top of exercising to any degree, it’s very easy to become deconditioned quite quickly. In the past my asthma has had the least effect on me when I’ve been most physically fit. One of my goals for this year include minimal exercise as I continue recovering from last year.
A couple of weeks ago i finally received the “OK” to drop from 5mg to 2.5mg. In the past week I’ve had a slight flare up and jumped up to 20mg with a quick taper to get things under control. My main lung doc wants me on the 2.5mg for the next two months until I see him again. While I hate being on the stuff I can’t disagree with his caution. I don’t need to repeat any of the seven ER trips I made and I can’t really afford to miss a large chunk of work again any time soon.
If you’re not sure who made this movie, you’re obviously not a big enough fan of Wes Anderson…but that’s just like my opinion, man.