I feel like such a boring person because the only thing remotely interesting in my life even to me is the fact that I cleaned out my closet and two cluttery corners of the bedroom. But I’m pretty satisfied with my hard work, so tough luck if you didn’t want to see it, tumblr.
Details of note:
-I have acquired 25 cycling jerseys in my 11 years of cycling. That might be excessive. They’re all folded neatly (for now) in a box on a shelf in the closet (as opposed to wadded up in a pile on said shelf). Hopefully I’ll be able to use them again soon. PT is going well and maybe I’m almost ready to give cycling a try again?
-The dumbbells next to my nebulizer pump are not there for any functional reason. They can no longer live on the floor because Zapp thinks they are weighted dog bones and will carry them around the house. He’s a nut. For some reason, he’s less tempted when they are not on the floor.
-That’s a large box + bag of clothes to donate. I took some nicer things to a chain resale shop that specializes in basically the fast fashion of college girls where they only buy name brand things from last season. I feel like I defeated them by convincing them to buy a FIFTEEN year old Calvin Klein dress that I bought at a super-discount store for like $30. I got $12 for it. It’s weird to think I have had a piece of clothing for 15 years. I would’ve kept it if I could get it over my butt. There’s no way I’ll ever be that small again and I’m fine with that.
-That tiny white circular frame by the tv? My mom has been trying to get me to put a wedding picture in it for her. We’ve been married 6 years. I guess I better get that done.
I call this series “Things Our Dog Zapp Has Mistaken for a Laser Pointer.”
1) The charging light for a flashlight on Matt’s bedside table
2) A sunbeam reflected onto the carpet
3) A sunbeam reflected onto the wall
4) A light switch because it’s small(ish) and white on an otherwise bare wall
5) Just a plain wall
Zapp will either ambush these “laser dots” and jump to bite at them or else stand and bark at them waiting for them to move.
After a couple months of laser-pointer-chase hiatus, Matt tried it again one night because our dog Seymour loves it. Since then, Zapp’s been obsessed. On that particular night, the laser pointer had been on Matt’s bedside table and while it hasn’t lived there since, Zapp is still suspicious of it and several times a day we find him staring at the table or wall nearby looking for his “dot.” So now he gets to play nighttime laser-pointer-chase in the backyard every couple of days.
-Decluttered, reorganized, and simplified our living room built-ins. They were a dusty, dusty mess and just one step in many to come as I gradually do a thorough clean out of all the stuff in our house.
-Installed a super-fast, modern cable modem, followed by spending a hour on the phone with my cable company to majorly upgrade our internet speed and cancel our tv service. We rarely watch live tv these days, and instead watch stuff on amazon prime or Netflix through the Xbox. It was a waste of money. Instead, our internet is now 3x faster, we’re saving $40/month, and actually our HD tv can pick up ALL the same channels as before using our cable jack as an antenna. Basically, the only thing we lost was the HD feeds and a selection of free On-Demand, but at $1-2 on amazon prime 24-hrs later for most of our shows, it’s no sacrifice at all.
-Spotted the new King of the Mailbox. Looks like Mr. Grackle beat out the usual Mailbox Mockingbird for the honors. It kind if creeped me out because he’s huge.
So I wore a mask to clinic. I felt weird. I appreciate all the input from my lovely internet friends. I appreciate the suggestions for how to own it while wearing it. I also appreciated knowing that all my other CF internet friends feel the same discomfort and that the general consensus is that wearing a mask doesn’t get easier mentally, which is what I expected. In an odd way, it makes me feel solidarity with my fellow patients in the isolation.
I was early to my appointment and there was another masked CF patient in the waiting room. My mom noted that it was an easy way to identify who I should avoid sitting next to. She also pointed out that while I was checking out after my appointment, another non-masked CF patient walked in who was clearly sharing germs with each cough that I could have unknowingly breathed in if I weren’t wearing my mask. So it served two purposes: to identify me to others and to protect me. At the end of the day, I felt good about wearing it despite the awkward feeling.
My lungs are doing well. Not much else to report. It was a good visit.
I go to CF clinic on Monday, which is my first visit since the Cystic Fibrosis Foundation issued new guidelines for infection prevention and control. For those unfamiliar, cystic fibrosis patients have chronic lung infections which often become antibiotic resistant. Contact with each other can spread these antibiotic-resistant bacteria to one another, so we are advised to maintain at least a 6 foot distance between each other should we find ourselves in the same location. (Of course, recognizing this is kind of impossible if you are not knowingly in a place where you EXPECT to meet another CF patient, but that’s another post altogether.)
There are also new guidelines for infection prevention/control in healthcare settings which generally involve lots of hand washing on the patient’s part, and exam room/surface disinfection plus gowning/gloving up on the healthcare providers’ parts. My CF clinic has been ahead of the curve on many of the recommendations, such as staggering patient appointments so that there is only ever one CF patient in a waiting room at a time, taking the patient immediately to an exam room upon arrival, having all the staff wear gowns/gloves when in contact with a patient (to prevent my germs from contaminating their hands and clothes and exposing the next patient), and performing pulmonary function tests in the exam room rather than having a common test room where each patient goes for vitals/PFTs at the beginning of their appointment.
However, one thing that is new that I have never been advised or requested to do before is to wear a mask whenever I am in any healthcare setting. This is to protect me from airborne germs more prevalent in a healthcare setting (like the flu) but also to prevent me from coughing and contaminating air/surfaces that other CF patients may unknowingly come in contact with. In the past, wearing a mask at CF clinic has been advised only if you carry specific bacteria. If you didn’t, you could go mask-free. The updated recommendation is now that everyone with CF, regardless of infection status, should go ahead and wear one. Some CF clinics have been following this policy for several years already, but not mine.
I am a very proactive patient when it comes to infection control and prevention. This is mostly because I want to protect my lungs for as long as possible since I currently do not culture any of the “bad” CF bacteria that patients my age commonly do. As an example, the new guidelines just now are recommending that patients sterilize their nebulizers before every use (CF patients do nebulizer treatments 2+ times per day). I have been doing that for 12 years now. It makes a HUGE difference and I am certain that it is the reason why I went from chronically culturing pseudomonas in my lungs since childhood to being pseudomonas-free for the past 12 years—I am not inhaling medication aerosolized through nebulizers contaminated with my own bacteria. My respiratory therapist has been telling me for years—YEARS!—that this is unnecessary overkill in terms of sterilizing my nebulizers and my response has always been “it’s not a big deal, doesn’t take a lot of time, and it makes a huge difference.” Now this is the blanket recommendation for nebulizer sterilization frequency. The point: preventing infection is very important to me.
Wearing a mask would fall under that category. But I have never done it before and it something visibly obvious that will set me apart from others at my hospital (99% of whom are there for reasons other than cystic fibrosis). Ideally, my clinic would provide them next to the hand sanitizer stations that are next to every elevator. This is a new protocol and has not yet been implemented, so I will probably need to go out and by my own masks for awhile. And I should probably put it on in the parking garage before I potentially ride an elevator with a stranger who might either be at risk of contracting my infection or could expose me to theirs.
The idea of wearing a mask makes me feel self conscious. I’m good at doing things that are not visible and don’t make me feel different/excluded in front of others. Growing up with cystic fibrosis for me has mainly centered around trying to achieve a level of “normal” so I feel confident, included, and as capable as everyone else. I don’t want people to notice that I have a disease. A mask immediately alerts every stranger who sees me that something is wrong with me.
Dear internet friends, do you have any suggestions for how to rewire my brain and attitude so that I can wear a mask without feeling self-conscious? I will wear one. That is not the issue. The issue is how I can do it without feeling emotionally affected by it. Self-confidence is a fragile state of mind, even at 32.
1) Trident K9 Warriors by Michael Ritland and Gary Brozek: This is a non-fiction book written by a former Navy SEAL who now trains military working dogs for the SEALS. These dogs are amazingly courageous and dedicated to their job. They do things like sniff out IEDs or enter buildings to flush out enemy insurgents for their SEAL team in the field. Since we’re currently training a working dog, it was interesting to see this extreme side of what working dogs can do. I particularly enjoyed all the details about their training and the how/why behind each behavior the dogs learn. Really cool book.
2) Inheritance: How Our Genes Change Our Lives—And How Our Lives Change Our Genes by Sharon Moalem: This is a non-fiction book about epigenetics, which is a field of medicine that studies how how environmental factors influence our genome—turning on and off cues for the expression of certain genes. I listened to this as an audiobook and it was read by the author, who is an MD/PhD, and also the author of Survival of the Sickest, which I read several years ago. I really enjoy his writing style and how he gets the reader to think about genetics (something we usually consider black and white) in a fluid way.
3) The Bat by Jo Nesbø: This is the first novel in the Harry Hole series (Norwegian crime novels). I started this series on book #3, because that was the first one translated to English. I thought it was a little weird, but now that I started at the beginning I can understand why: the first two books are a little different and do not take place in Norway. This one is set in Australia. Matt and I listened to this as an audiobook on our vacation road trip.
4) Cockroaches by Jo Nesbø: This is the second novel in the Harry Hole series. It takes place in Thailand. We listened to this as an audiobook on our road trip.
5) The Redbreast by Jo Nesbø: This is the third novel in the Harry Hole series, and a re-read for me (also listened to as an audiobook on our road trip). I think the story telling in this book is really excellent and I can see why this book has won awards.
This has been my morning view this week. I’m a motivated person and historically haven’t needed a lot of reminding to get my butt moving to keep my lungs strong and clear. But to be honest, the past year of up-and-down physical set backs has generally left me sporadically motivated to workout. I want to workout, but my body hasn’t made it easy to find the right balance of intensity and consistency that I can maintain without aches, pains, and injury as a consequence. My skeleton and muscles at 32 cannot do what they could at 22 and it’s disappointing. I’ve lost my forward momentum.
Since returning from vacation I have decided that maybe the key is to set smaller and more achievable goals. 20-25 minutes of walking every morning that doesn’t make my knee, IT band, and back sore the next day is better for my lungs than working out 1-3 days a week on the elliptical trainer for an equivalent time that leaves me sore enough the next day that it’s difficult to maintain forward momentum.
Today makes 5 days in a row of going for a walk with my dog Carver after I finish my nebulizer/airway clearance routine each morning. It’s Saturday today, so it doesn’t alter my schedule greatly, but during the week I’ve been getting up 45 minutes earlier so I have time for a shower afterwards before going to work. I feel good afterwards, both physically and mentally. I hope to make this a habit. Eventually, once my body is stronger and my knee is fully healed from cycling-related tendonitis, I hope this morning walk can evolve into something more intense like a bike ride or—my very lofty goal which I’m not getting my hopes up for—a jog if my old lady back ever permits that again.
A man and his dog.