I came across this site today. It’s a project where a team is working on a device to have in your home that detects amounts of pollen and other particulates in the air. This could help those sensitive to air pollutants to know what is bothering them. I think it would be really interesting to have that kind of data, but maybe not at the $350 price tag listed in their survey. I happen to be allergic to almost everything outside so I’m not sure how knowing those allergens are present would help me. What’s really interesting is how this data could possibly supplement data collected nationally. It’d be kind of like a home weather station, only an allergy station.
Archive for Life
When I was a kid I spent a lot of time with my Mexican grandfather. The guy is a genius. He is both an electrical and mechanical engineer and worked for Amana Refrigeration for years. When hanging out with him, there were always projects involving wiring, plumbing, carpentry, combustion engines, drywalling, framing, painting, etc. The guy can take a car apart and put it back together without any extra bolts or washers lying around afterward.
Many times I remember helping him and accidentally messing something up. Once I stepped on a sheet of drywall and broke off the end. Several times I knocked over containers or tiny pieces and parts. I would volunteer to help and sometimes give up to do something more “fun” halfway through. I’ve broken tools and equipment on accident, and have become bored on many trips to find materials or needed parts.
Sometimes he became frustrated, but most of the time he acted like it was no big deal. Last weekend I was getting rid of some bank statements and other documents now that taxes are submitted. I got a new paper shredder and naturally Ruthie wanted to help. Who doesn’t love shredding papers?
I gave her a stack of things and before I knew it, the shredder was jammed up awesomely well. It took me 30 min with a long screwdriver to unclog the thing. At first I was frustrated and vocalized it, but then I remembered all the times I had screwed things up for my grandpa and realized it’s not that big of a deal. All I ever wanted to do was spend time with him and try to learn the amazing things he was capable of doing. I wouldn’t say using a paper shredder really compares to re-wiring a house, swapping out a water heater, or replacing the head gasket on a 1988 and 1/2 Ford Escort…but I try to put myself back in the shoes of a kid who wants to help. I’m happy to say I think I learned a lesson in there and Ruthie’s back on the paper shredding job.
If you suffer from sleep apnea or a similar conditions which requires you to wear a CPAP/BiPAP/APAP, it is very important you do. It always shocks me when I talk with friends who are supposed to be wearing their mask at night but instead choose to put it in the closet, etc., because they don’t like it. Personally, I’d rather not sleep than sleep without my CPAP and last week unfortunately proved that for me.
It was Saturday morning/afternoon and I was out in the living room watching TV. The next thing I know, Liz is yelling and yelling at me to wake up. I had unintentionally fallen asleep for 90 min or so on the couch. Little cat naps aren’t supposed to be a big deal, but they are for me. I felt awful and was having trouble functioning. I made it to my room and got my mask on. Later that evening I walked to the kitchen to get some water and my O2 sat was down to 81%. I then spent three of the next four days like this:
In addition to getting nothing done and missing some work, I also now have a sore on my face from where my mask rests. I’ve gotten red marks before from having my humidity turned up too high, but this is worse. I’m sure the best thing for it would be sunshine and open air, but I have to put my mask back on every night. My CPAP cleaner does a good job of sanitizing everything, but I’m not sure what to do about the sores on my face. I am thankful my oxygen levels are back to normal and I’m not constantly short of breath.
I think it’s fair to say most CPAP, BiPAP, Auto-PAP, etc., users dislike having to clean their equipment. If you’re like me, you think about it right before you need to use it. I’d been hearing good things about the SoClean 2 from Better Rest Solutions, and decided it would be a good idea to try it out.
The price is a bit on the expensive side. I got mine from National Sleep Therapy with a coupon code and that helped. I’ve been having so much trouble with colds and other viruses, I thought it was worth trying. Luckily I had FSA money to use.
The unit includes a short instruction manual that made it quite easy to figure out how the SoClean 2 works. My CPAP has an attached humidifier and there are directions for those with or without humidifiers. There are also additional instructions for those with heated hoses. The SoClean 2 can run on a programmed scheduled, or be ran manually. It comes preset to clean at 10am. After I wake up in the morning, I place my mask into the cleaner, shut the lid, and it’s clean when I come home.
How it works
I’m no scientist and therefore am unable to accurately describe exactly what happens. The SoClean 2 uses activated oxygen to clean your mask, cushion, hose, and humidifier. It runs for 5 to 10 minutes, and then you must wait 2hrs before using your CPAP again. With all my breathing issues and winter woes contracting sickness from everyone I’m around, the last thing I need is my own medical equipment perpetuating sickness. There are some comments about a smell from the cleaning process, and I read one review where it was described as a swimming pool/chlorine smell. That kind of makes sense, and I want to point out it doesn’t bother me at all. It doesn’t stick around very long. It is suggested you run your machine for 20 seconds or so to clean the smell out. All I know is that if I’m lazy and don’t clean my mask/cushion for a week, the smell from that is much, much worse than what the cleaning leaves behind.
I would definitely recommend this unit if you have the money to spend on it. There are some replaceable pieces you do need to take care of every six months, similar to replacing parts of your nebulizer or CPAP. The cost isn’t too bad, currently $30 gets you the replacement kit from Better Rest Solutions. You can still clean your machine as usual with soap and water. I’m finding this convenient, time saving, and it gives me piece of mind.
I hope everyone’s doing ok. Winter seems to be my best time of year since most of the plants outside are dead. I ordered a new, fancy CPAP cleaner this week and will write up a review once I’ve tried it out. It’s not a big deal to clean masks and cushions, but the hose and humidifier reservoir are things I’ve never been good about cleaning.
Like almost everyone I know, the flu came through our house. I was extra special and picked up two separate strains of it. I feel as though I’m also getting back on my feet from my last hospital adventures, etc. I’m also taking a break from school to sleep more and catch up on life. Next up on my To-Do list is taxes. It always takes me a while to compile, sort, and calculate itemized deductions for medical.
A couple of months ago I ended up at the ER again short of breath, with chest pains, flaring allergies, and low oxygen. They ended up keeping me a few days mostly because my o2 was in the 80s and my ABG came back not good. I ended up connecting with a great hospitalist who looked through my medical history and really wanted to track down the root cause of my health issues. She ran some tests and was in close contact with both of my lung doctors throughout the process. After being released I saw my second pulmonologist out in PA, did more tests and it was determined I do not have asthma.
Even after a couple of months it feels weird to say that as it has been a big part of my life for the past 23 years or so. I still have the breathing problems, but it was confirmed I do have vocal chord dysfunction (VCD) and my chords are pinching on exhale which really mimics asthma. I was often asked if it was hard to breathe in, assuming VCD could be pinching my throat shut on inhale, but for me it was the other way around. I was taken off a lot of medications and given a few new ones to take. I’m still having a rough time with Fall allergies, the rotting leaves outside, and smoke outside. I’m looking forward to winter when the outdoor allergens freeze and I’ll have a few months of better breathing. Hopefully my health will be in much better control next year.
Every year, August is an especially rough month for me and mister asthma. A year ago today I was in the hospital having an awful time, not sleeping, and anxiously watching the clock waiting for the RT to come by for another treatment. I hate being in the hospital and, in my dislike for being sick, I often try to bounce back earlier than I am able.
I should really listen to Liz more often, cause she’s never wrong.
It was probably 9 or 10 years ago I casually mentioned to Liz, “I have asthma kind of bad.” That may not seem like a big deal or a bold statement to make. In actuality it was my way of showing Liz I trusted her enough to nonchalantly downplay my serious respiratory condition. Back then I tried to hide my asthma as much as possible. I didn’t deny having the disease, but I let as few people as possible ever see me having any trouble. A good portion of my life has been spent pretending like I’m ok, and it seems like people usually buy it. There’s a lot you can hide by sitting, smiling, nodding, making hand gestures, and just acting chill. When things got really bad, I’d just disappear for a few days in my apartment and no one thought anything of it.
In the past 10 years Liz has seen pretty much every aspect of the disease. She’s seen me go from fine to gasping within seconds, she’s taken me to doctor’s appointments, and has sat with me on many, many hospital trips. She’s picked up who knows how many prescriptions for me at the pharmacy. She’s watched me try to walk down the hallway to get meds to end up on my face, on the floor. She’s yelled at and threatened people illegally smoking in my general vicinity. She’s explained over and over and over to people why I suddenly can’t go somewhere or participate in some planned activity. She knows when I’m pretending to be ok.
Earlier this month I was in the ER again. As usual I was sick of being sick, and worried about being away from work. I stayed home for two days and against the advice of The Liz, I went back to work because I felt like I needed to be there to assist with a big upgrade. Well, I showed up, pretended to be ok, worked a full day without lunch, and then spent the next 7 business days at home. After going back to work I picked up a virus of sorts, became feverish, started coughing crap up, and watched my peakflows drop. Thankfully Liz convinced me to stay home that entire week and by the end I could actually take deep breaths and in 7 days my peakflow numbers doubled.
I actually feel not so bad this time, and think this is the best I’ve been breathing since May or earlier. Liz says this is the first time in 10 years I can say I’m doing better than I was last year. Even though FMLA paperwork is the bane of my existence, listening to Liz and staying home for a couple extra days is way better than not and having to spend an extra week or two home.
Just as I had predicted the day before, it’s August and I’d probably end up having an ER trip. I just didn’t think it’d be happening so soon. Three days in a row I was exposed to some sort of smoke and the third time apparently worked. A racetrack several miles away was having a special event that night where they were attempting to make as much carbon pollution as possible. The result of said event made my entire neighborhood, several miles away, smell like burning tires.
I gave it almost a couple hours before deciding to throw in the towel and admit defeat on this one. On the way, Liz said,
I’m sorry for making you go to the hospital.
She knows how much I don’t like going there, even though I get the help I need, because it tends to set me back a bit with work and other things. For example, I’ve been awake close to 2 days now. That’s what happens when I’m injected with solumedrol and my prednisone dose is greatly increased afterward.
We were surprised to see the place so empty on a Saturday night. I never really have to wait, but that just means they get to me even faster. Recently a friend of mine blogged about how emergency treatment protocols for asthma seem to have changed. I’ve noticed some of the changes myself. As usual I was having trouble talking clearly and being understood so Liz was able to answer a lot of questions for them. I think this was the 4th time I had seen this particular respiratory tech, and she totally remembered me, so a lot of the initial questions were just confirming medical history and medications.
They checked on me fairly often because I wasn’t able to move a lot of air when I arrived, but the treatment was pretty identical to my other two trips this year. One duoneb treatment, followed by listening to my lungs and checking O2 sat a while later, followed by 125mg solumedrol, see the doc, and then go from there. I can always tell how much the doctor has read my chart by how the conversation goes with him or her. I know this doctor hadn’t read much at all. She told me I was moving more air, sounded ok, x-rays looked ok, and she was going to “send me home with steroids that’ll make me better in a couple days.”
I’m fairly familiar with prednisone as I’ve been taking it off and on for years. In fact, I’ve been taking it every day for the past 15 months. I’m also on every type of maintenance medication they give to asthmatics including xolair. That and the fact I’m prednisone dependent gets me labeled as a severe asthmatic by many. When doctors have read all this stuff they usually want to have a 10-15 minute conversation with me or longer. They want to know how I’ve been recently, what I’ve tried, what works/doesn’t work, what brought on this exacerbation, symptoms, what I think we should do, do I think I should be admitted, have I heard of BT, etc, etc, etc.
So on this trip I got a few nebs, solumedrol, and was sent home after a few hours. Some of my severe asthmatic friends liken this to a tune-up or oil change for your car. You know, a quick maintenance sort of thing that needs to be done, and there are probably many other things you’d rather be doing instead. I really hope I can stay on track with things for a while and not have to go back. Things are really starting to ramp up right now with school starting soon and I kind of need to be around for stuff.
The funny part for me would have to be when the nurse was going through discharging papers with me and pointed out I was diagnosed with an asthma exacerbation followed by, “you probably know more about it than the paperwork…you probably know more about it than I do.” Sounds like the nurse read through my chart.
The month of August tends to be dramatic and/or traumatic for me. There’s always a lot going on between heat, humidity, allergies, and the school year starting. Last year contained three hospital trips for me, and off the top of my head I can think of 4x I’ve been in the hospital on my birthday. Yesterday was the first day of August, and as usual I am bracing myself for whatever is to come.
I’m still working on “getting better” from my ER trips in June, and also not repeating last summer/fall sitting at home for weeks on end trying to breathe properly. I still have a lot of days where I feel awful, many days where I feel sort of awful, and a few days where I’m feeling OK. One of my big goals at the moment is to get my prednisone dose back down to something that doesn’t keep me swelled up and my teeth hurting. In the past few days I’ve been exposed to cigarette smoke twice and fortunately haven’t had extreme reactions to it. Yesterday was the most recent along with a short burst of crazy rain which left me in bad shape. This morning Liz said,
I’m sorry for not taking you to the hospital last night
Made me laugh to beat the band. At one point she was commanding me in a loud voice to take another treatment, sit up straight, and other sensible things that I seem to forget about when it’s really hard to breathe. I’m actually thankful she didn’t drag me to the ER because I’m trying really hard to not miss work. Hospital trips always end me on insane amounts of steroids, and feeling extremely exhausted for days.
Asthma attacks or flares tend to run their course whether you are in the ER or not. While I would always advise someone to get help if they are having breathing problems, I’ve been dealing with this long enough and am on enough medicine, there is a lot I can do at home that would be done at the Hospital. As long as it’s not too bad, I can wait things out at home for free instead of getting charged to wait them out on an uncomfortable ER gurney.
For now I’m continuing to keep track of symptoms, peakflow numbers, oxygen saturation, general symptoms, and trying to make sure I take my medicine on time. I’m really, REALLY hoping I can stay out of the hospital for the next 30 days. If I do, I’ll consider it nothing short of a miracle.