Archive for Asthma Boy

Children and Chronic Illness

I am chronically ill, and I have two children. I don’t like admitting I can’t always take care of them, mostly because it is true. Fortunately they are very understanding and are kind of used to it. It can become really difficult when I’m solo parenting though.

Last week, my special lady friend was in L.A. for a work conference. Kid #1 goes to school during the day and Kid #2 is with a babysitter during the day, but I’m on duty for nights, mornings, and weekends. I was doing alright until the weekend.

I wasn’t feeling well before Liz left. She was worried things wouldn’t be ok. The kids weren’t adjusting well to mom being gone, but I was doing ok. The week progressed, and I became slightly more and more tired each day. I’m often able to rest and recharge on weekends, but not this time.

I did get a break for a couple hours Friday night and Saturday afternoon, but I was already feeling bad enough that it wasn’t enough for me to feel better. Sunday morning I got the kids some food, turned on the TV, and laid back down. They woke me up at 11, 12, 1, and 2. They were hungry, they were tired, and they needed some attention. I was able to get a family member to come get them around 6, but by then I was in pretty bad shape. It’s now three days later, and I’m just now doing some normal things like: not sleeping all day, eating, and talking to people.

I’m fortunate that my oldest can watch over the youngest and mostly keep him out of trouble. I’m grateful to have family around who can help out at times. We’re all glad to have Liz back, and hopefully I can hack it next time. The kids are also fine, I just wonder if they think all dads are like me.

Purple Mattress

So we’ve been looking, thinking, and searching for a new mattress. The one we got almost 5 years ago has two valleys in it from where we sleep, kind of like a Home Simpson ass groove.

Unfortunately, we don’t like those grooves as much as Homer does because it’s been hurting to get up every morning. Beds are a difficult thing to purchase without remorse. Many boast 5 to 25 year warranties with 121 caveats when it comes time to get your mattress repaired or replaced. It’s also easy to spend thousands of dollars if you aren’t careful.

I decided to take a gamble on a Purple Mattress. A big selling point for me was the 100 day trial period with a full money back guarantee. Usually you’re offered 30 or 45 days to change your mind, and that doesn’t always come with a full refund.

So far we’ve been sleeping on it for a week and are enjoying it. The only annoying thing at this point is the mattress protector I bought is baggy. It’s made for mattress 8″ to 22″ and the Purple Mattress is 9.5″. We’re looking for one made for not-deep mattresses to have less extra fabric.

Digital Peak Flow Meter

In October I bought myself a digital PF meter from Amazon. I did a little research online, talked to some friends, and then ordered the Microlife PF 100. I don’t remember to use it everyday, but I really like being able to see FEV1 along with the peak flow value.

I’ve found it interesting how the FEV1 value will change when my PF value stays relatively the same. This is often paired with me feeling worse. This extra data has also been helpful when checking in with my lung docs if I’m not doing well. The device holds 240 readings so you can always scan through your past numbers.

Supposedly you can use a provided USB cable to download your values to a computer. I’ve been storing my data at OurBreeze.com. It graphs everything out for you, will alert you based on your best values, and there’s even a forum to get advice from, and chat with fellow asthmatics and those who have breathing disorders. Be sure to check it out.

Taxes done

I finished and filed our taxes today. It’s always a bit of a chore because I add up all our medical expenses. As usual, we spent around $16k on prescriptions, doctors and dentists; hospitals, x-rays, and labs; glasses and contacts, medical supplies, and “other.” The added bonus of tallying all these expenses is I get to see how much I spent. It’s also at times like these I can do nothing but shake my head at those who think The U.S. does not need health care reform. I suppose this could also be a time to start a tirade over some of the candidates hoping to be elected president next year, but I’m supposed to be avoiding stress.

We’re also getting some money back, which is great, but it’ll just be putting a dent into some of those medical expenses. Maybe some year I’ll be healthy and get to spend a tax return on something fun.

RSV

I have a couple kids, and the youngest has some mild breathing problems. Two or three weeks ago he became sick, was having a lot of trouble breathing, and was hard-core retracting. His doctor said it was RSV and started him on some steroids.

RSV is supposed to be dangerous for babies and old people. Supposedly if us adults get it, it’s just a cold and you cough a lot. I ended up hanging out with the little dude for a week while he coughed and sneezed in my face. Sometimes he’d let me give him a treatment, and other times he fought it. Things seemed to be going decently well until I started feeling under the weather.

Things went from bad to worse in about 6hrs. Lately whenever I get sick my oxygen saturation drops. That night I was reading 85-89%, feeling pretty lethargic, and looking like two nebs short of an ER run. Luckily I tend to have prednisone on hand and a very responsive pulmonologist in town. I took some magnesium and then sat in a hot bath with epsom salt, which also contains magnesium. I can’t count how many times this has saved me. Magnesium helps to relax smooth muscles and let your airways chill out.

I’m still having ups and downs trying to kick this thing, but this morning I was able to ride my bike so that’s a good sign. I wish I could skip cold and flu season each year.

 

Perfect gift for Liz’s birthday

So Liz recently had a birthday and I got her an assortment of gifts. One of the items was apparently SUPER amazing. It wasn’t jewelry, chocolate, a paid vacation, or anything else extremely expensive. I got her this….

It’s a thing you can put over the overflow drain on your bathtub allowing you to fill your tub to the top with water. That’s all it takes to woo your special lady friend – the gift of a full bathtub.

Lists

I’m sort of a list person. Writing things down magically helps me to remember them. Sometimes my lists only exist in my head. Lately my lists have looked like this.

  • Wake up
  • Check breathing stats
  • Take medicine
  • Get kids ready
  • Get ready for work
  • Go to work
  • Come home
  • Dinner, baths, and bedtime routine
  • Take care of bills and household things
  • Sleep

More often than not, my list has stalled out around items three or four. I haven’t been to work in two weeks. I’ve worked 18 days in the last three months. Tomorrow the plan is to go to work, hell or high water. If nothing else, I need to get out of the house and do something just for my mental sanity.

Using a CPAP when sick

Using a CPAP and wearing a mask on your face can be difficult even when you’re feeling 100%. When not feeling well, compliance can be a problem for even the best of us. Wearing your CPAP when sick is even more important because your body is relying heavily on sleep to get better. Here are a few things I’ve learned or discovered that can help me stay compliant.

Sinus rinsing

The thought of using a neti pot or similar product seemed awful and disgusting. I even avoided using one for about 18 months even though my doctor insisted and provided me with multiple samples. Once I finally found some courage to do it, I was shocked at the benefits – and all the snot that came out.

I use the NeilMed Sinus Rinse bottles. It’s a squeeze bottle which allows me to control the pressure when I’m clearing out my sinuses. It’s a good idea to use filtered or distilled water. I get my water from a Brita filter I keep in the refrigerator, so I usually microwave the bottle with the cold water for 30-40 seconds so I don’t experience brain freeze.

I think the packaging suggests one rinse a day. My doctors have instructed me to rinse twice a day, especially during allergy seasons which last March to November for me. I often have a period of “good sinuses” and forget to keep rinsing, only to go to a regularly scheduled doc appoint and be told I need to get back on track. It’s especially important when I’m sick.

Don’t let your sinuses dry out

Humidify your CPAP – There are several ways to assist this problem. I use a heated humidifier with my CPAP. Once I used it without in a dry, dusty hotel room. My sinuses were so messed up I had major nose bleeds eventually resulting in me shoving a tampon up my nose. Yeah, I realize that probably sounds odd, but the cheap, singly-ply toilet paper in the room seemed to dry my nose out even more and wasn’t really absorbent.

If you experience rain-out, too much water in your mask, try adjusting your humidifier setting to something a little lower. You might also inquire about a heated hose with your CPAP supplies provider.

Drink more water – Drinking water can also be a big help. I try to drink a gallon of water a day. It doesn’t always do the trick, but it helps with a lot of things.

Moisturize your sinuses – An allergy doctor suggested I get saline in a spray bottle for my sinuses, or try out Ayr sinus gel. It was helpful, but seemed not to have any long-lasting effects. It reminded me of cough drops or chapstick – once you start, it’s hard to stop. Another doctor suggested I try Ponaris Nasal Emolient. The packaging boasts astronauts use the stuff. It comes with a dropper and has a medicinal smell like tea tree oil. One drop of this in each nostril keeps my sinuses in good shape most of the day, if not the entire day.

Application can be a bit tricky dropping liquid up your nose. I usually lie down on my bed and tip my head back. Be careful not to squeeze too hard on the dropper or you’ll put way too much in your nose and it’ll all run down the back of your throat. After putting the drops in, I often squeeze my nose a bit to move the emollient around. If a little bit starts to run out your nose, some simple dabbing with a tissue will take care of it.

Try changing your mask

Earlier this year I was having trouble keeping my oxygen levels up, and the easiest way to feel better was to stay at home with my CPAP on. The problem I experienced was sores developing on my face from being in contact with my mask 18 hours or more a day. I started folding up a piece of toilet paper to act as a buffer between my mask and face. That helped, but it wasn’t a long-term solution. I eventually had a chat with my CPAP provider and got a different style of mask. Now I alternate masks every day to help prevent this issue. Different mask types might also help you in using your CPAP while sick. If you mask is only attached to your nose, a nasal pillow or cushion, you might try a full-face mask. Many like them because you can breathe through your mouth or nose.

Clean your CPAP

Probably the easiest thing to do is make sure your CPAP, and its replaceable parts, are clean and replaced on schedule. Leaving a dirty filter in your machine won’t help you at all if you have allergies. You should also be rinsing your mask parts out, and emptying your humidifier reservoir daily, and washing them with warm water and soap weekly.

SoClean_2

Towards the beginning of this year I decided to invest the money in a SoClean 2 unit. Each morning, after I wake up, I simply place my mask, with hose attached, into the cleaner. The machine runs on a timer, similar to a programmable thermostat, and starts up when I want it to. The cleaner runs for about 7 minutes and then needs two hours before you use your CPAP again. It even sanitizes your humidifier reservoir allowing you to keep whatever water you had from the previous night. The cleaning unit costs around $300, which I admit is expensive, but the peace of mind and ease of keeping my CPAP clean is worth it for me.

Have I left anything out? What do you do that helps? I’m always interested in learning what others have done and what helps. I didn’t mention this above, but you should always check with your doctor or CPAP provider if you’re having any trouble with your equipment or usage. If one or both of these are unresponsive or not helpful, consider finding a new one if possible. I’ve sacked several doctors and durable medical equipment providers over the years for not providing the level of service I need.

One year of Lucky Scruff

I’ve been a Lucky Scruff customer for almost a year and a half now. I did an initial review last year, and have planned to do more reviews of their products, but just haven’t gotten around to it. So here’s a digest of sorts.

Beard Oil

I really dig their beard oil. I feel the quality is just as good as some of the more expensive brands, and I love their scents. My favorite are Holy Beard Oil, Dragon’s Blood, and Dragon Forged – which seems to be almost a mix of the two. The weight of the oil is a good medium between heavy and light, lasts all day, and takes care of any skin dryness of beard dandruff. It also makes my beard look great.

Beard Balm

I was really excited to learn Lucky Scruff was releasing balms last year and got in early by being a part of the $20 Beard Club. Holy Beard Oil was the first scent made into a balm, which was great because I was already using the accompanying beard oil. It does just what I was needing in the way of control. It keeps all the fly-aways down and shapes my beard without it turning into some odd, looking hairspray sculpture from the 80s. I also don’t have to apply it every day, it’s more like 2 or 3x a week. I also have the Dragon Forge beard balm which I love just as much as the Holy Beard Balm.

$20 Beard Club

I joined the $20 Beard Club about a year ago and stayed subscribed for 8 months. The way it works is every month you want to participate you are charged $20 + shipping. Included in your package is a beard oil with something else. I received two or three oils some months, beard balms, combs, soaps, and other beard supplies. It’s much cheaper than buying the items individually, and Lucky Scruff posts the contents of the month’s package ahead of time so you can decide if you want it or not. I didn’t quit out of dissatisfaction, in fact, I unsubscribed because I realized one day I had amassed a collection of 15 beard oils. One ounce of beard oil lasts me about three months, and the shelf-life of beard oil doesn’t last forever. If I actually use up my stash some day, I’ll most likely re-enroll.

beardDrawer

Beard supplies

Customer Service

The guys at Lucky Scruff know how to take care of their customers. All their products come with a guarantee. If you don’t like what you’ve bought, within reason, they will replace or refund your purchase. They are also quick to respond on social media and by email if you have questions or concerns.

They also have great swag in the form of can coolers, stickers, and other items. You get a can cooler with every order, so I’ve given many of them away.

Can Cooler

Can Cooler

As you can probably tell, I really dig this company. If you’re looking to start taking more intentional care of your beard, check out their products. Also, feel free to ask me any questions. I’ll answer them the best I can, or will refer you to someone else.

Took a trip and I didn’t get sick

Last week I wasn’t feeling too great because farmers were harvesting the soybeans around my house. The process puts an inordinate amount of dust and particulates into the air effectively making it “hard to breathe.” I hid inside Monday through Wednesday, and Friday Liz and I headed up to Michigan to hang out with friends for the weekend.

As usual, I had more medical stuff packed than non-medical stuff – even with me taking my laptop and a stack of books. We stayed in a big, rental house on Lake Michigan. It was one of those places with a steep driveway, and a steep set of stairs to get to the main floor. Once inside, all the bedrooms were either on the 2nd or 3rd floor. I was miraculously able to carry our stuff up from the car.

While there, Liz and I took a trip down to the beach which basically meant climbing down the hill we “went up” to get to the house, and then climbing back up. Once again I was able to do it without any adverse side effects. While there, my allergies were definitely bothering me and it seemed like the house either had some mold or tons of dust in it. A few puffs on the ol inhaler kept me in tip-top shape.

Today I am sitting in my room watching Back to the Future while typing this. A few hours after arriving back home the effects of all the harvesting kicked back in. I’m hoping I’ll be well enough to go outside again. The wheezing and shortness of breath really wears on you after a while.