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.
Here’s a good interview of John Goodman by Jimmy Fallon. It is hard to believe Jimmy just got around to watching one of the best American films to come out of the 90s. It’s great to hear him laugh about seeing the funeral scene for the first time. I’d totally watch the sequel he pitched.
Several years ago my allergist at the time thought some of my breathing issues could reside in my throat. Unfortunately, like many of my other conditions, at the time I wasn’t experiencing enough symptoms for the proper doctor to follow up on that. Now several years later things like vocal chord dysfunction have been brought up once again and I figured I need to get that checked out.
My first step was to once again acquire a local ENT. I had a great one before we moved and then had a terrible experience after we moved. The doctor was so-so and the staff was a nightmare to deal with so I just quit going. I had some reservations about returning, but decided I needed to just man up and do it. Turned out that doctor with whom I was not thrilled no longer worked there and the new one they switched me to was amazingly better. He was somewhat impressed with my list of medications and conditions and thought it’d be a good idea to go ahead and get a video laryngoscopy and see what that turns up.
Last week I went to the rehab center and met with a speech pathologist. The easy, non-evasive scope wasn’t able to do the trick due to my over-sized tonsils and uvula, those wonderful things that greatly contribute to the OSA and enlarge when the allergies act up. Everything was a little red which can be caused from the GERD and all the inhalers I use. There was also some thickening in my vocal chords most likely caused by the years of coughing and throat clearing. The good news is there wasn’t any blatant signs of VCD, but there’s probably a little something going on there which is contributing to everything else.
For now I’m following up with the speech pathologist who is going over some stretches and voice exercises with me to make sure I’m speaking with the right part of my throat and not tensing up. The staying relaxed bit is good for several reasons and most of what she’s having me do are things I’ve done in the past to one degree or another when I used to lift all the time. It’s been a wild and crazy 8 months. It’d be great if my five doctors could get this figured out for me.
A couple months ago while I was talking to a SARP research nurse, she was asking me a bunch of questions about medication, triggers, experiences, etc. We started talking about nebulizers and she asked how I clean mine. I said I rinse/wash them once a day and then once a week clean them in vinegar. While this was the preferred method for “deep cleaning” your equipment, there has been some recent research that shows soapy water is actually more effective.
So I’ve switched from buying giant jugs of white, distilled vinegar to putting my nebulizer pieces into a plastic bowl and letting them soak in hot, soapy water for about an hour. I’ve had people tell me they can’t wash their nebs in vinegar because then it tastes like vinegar or they feel like they’re inhaling vinegar fumes. I’ve never had that happen, but I would also thoroughly rinse everything after the vinegar soak.
Unfortunately this doesn’t work for my CPAP cushions because our dish soap is anti-bacterial which breaks down the silicone or whatever the comfort gel blue is made of. I still use liquid baby soap for that. No matter how you clean your durable medical equipment, the important thing is to actually clean it. Using a dirty nebulizer isn’t going to help you at all. I’ve seen old parts with mold in them, and if you happen to be sick with something bacterial or viral, you might be re-infecting yourself. It’s kind of like what they say about getting a new toothbrush after you’ve been sick.