…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.
This may not sound like a big deal…
I didn’t take any albuterol yesterday.
No, I’m not lying, and yes this is kind of a big deal. Last time I didn’t puff an inhaler or take a neb treatment was April 30th. This has officially been the worst medical/health/breathing year of my life to date. Most years the fall is a little rough until the cold weather comes, the plants die, and the farmers quit working in their fields. That time of year has started and the cold temperatures have definitely brought some relief. My allergies have been going a little nuts being in some dusty rooms here and there at work, but other than that I’d say I’m not too bad.
My next goals are to continue to increase my physical activity without overdoing it, and to continue to taper off the prednisone. As much as I’d like to go running or lift some weights, appropriate levels of activity for me are things like walking, one flight of stairs at a time, using 25lb dumbbells at home, and slowly riding my bike. Hopefully I can continue feeling not so bad and get back to feeling normal throughout the winter.
Today I saw a new ENT doctor. I wasn’t really sure how it was going to go. A couple years ago I started seeing a different doctor in the same practice and then quit going due to insurance, not happy with the doctor and too many bad customer service experiences with the staff over the course of a week. Now I’m really needing to re-establish a relationship with an ENT and this is the only practice close to where I live. One handy aspect of it is they’re two floors up from my pulmonologist so it’d be easy for them to chat and compare notes. I ended up calling a few weeks ago to find out my doctor had left the practice so they needed to transfer me to someone else. I’m not sure what the other doctors are like there, but I feel like I got a good one.
Dr S was extremely friendly and personable. He was interested in what I had to say and actually listened. He also didn’t shove his fingers in my mouth or jerk my head around by my tongue like the last one did. Dr S tried to get a handle on my history, what I’ve been dealing with, what my current treatment is and figure out what he could do to assist. I have five doctors so it’s nice when one wants to be a team player. He checked me out, scoped my vocal chords and I’m going to be following up for a video laryngoscopy. I felt like I was in good hands after the visit and am confident he’ll be a contributing factor in my treatment.
Later today I cooked a pot of pinto beans. This may not sound like a big deal, but it takes at least six hours from start to finish after you sort, clean, soak and cook the beans. I used to cook all kinds of things all the time. Saturdays were often dedicated to trying new things and cooking large quantities of something to eat the entire following week. The past few years I’ve hardly cooked anything at all either because I couldn’t physically stand in the kitchen that long or I’ve just been too exhausted to even think about it. I feel like it’s a tiny accomplishment on my road to recovery from this summer. I’m still on tons of medicine and still taking prednisone, but at least I’m able to have intelligent conversations now and spend a little time slow cooking something I enjoy eating.
If there’s one thing that can turn my day into a horrible, sweaty mess it’d be a breathing test. After I showed up at my lung doc’s office earlier this week to find their computer system in shambles and my appointment lost, they rescheduled me for today. I showed up 10 minutes before my appointment to find the computer problem even worse than before. Cardiology was turning all patients away and forcing them to reschedule, but fortunately pulmonology was seeing any patients who arrived. My appointments were still in the computer from a couple days ago as I was scheduled for spirometry and then a visit with the NP.
So a couple weeks ago I became extremely congested, which slowly moved from my sinuses to my throat to my chest. I did a measly five-day z-pack, which I was skeptical about, yet they tell me I only have expiratory wheezes now. I’ll take that over the constant accordion noises I was making at the beginning of the week. My visit did start out with spirometry which really isn’t a big deal. On a good day I just exhale as forcefully as possible into a tube and as long as I have three good attempts that aren’t statistically-significantly-different (did I just make that hyphen up?) from each other, I’m good to go. Not so much today. Any resemblance of a forceful exhale was sending me into coughing fits and I sounded like those old people who see my doctor. You know, the ones with SERIOUS breathing issues who are targeted by all the commercials for my medications. Even the nurse said, “GOOD GRIEF! Sounds like we’re breaking some junk up in there!” Eventually I had three that were similar enough to count and I actually felt much better after breaking up all that junk. Unfortunately that feeling last maybe an hour before I was back to where I was. This is why trying to stay active is important and why they’re always worried about people lying in hospital beds getting fluid in their lungs. There’s still no end in sight yet for my prednisone habit, but I’m hoping my exhales can start sounding less like the 70 yr old thankful Spiriva allows him to eat dinner at the table and more like…well, a normal person.