Note: At the end of this post are links to previous posts about my lung disease. I’ll keep these links at the end of each subsequent post or figure out how to add a Table Of Contents.
When we last left our hero…
The more I deal with my lung disease, the more things start to become clear and these things are beyond the physical. So much concentration is focused on what you can do, how you feel, how you look, how you get around, all things that are tangible and viewable. However, dealing with any debilitating disease or injury is much more than the visible effects and scars.
What really needs treatment and rehabilitation is your mental ability to both reconcile what your life is now compared to what your life once was, as well as to come to terms with how it is viewed and accepted by others. In addition, in my case, I miss the driven nature of my type of job, the people that it brought me in contact with, the impact it would allow me to have at times, and the learning experience and growth that was there for me. I do NOT miss my particular workplace but I deeply miss the work environment and participation, and I miss the video industry deeply.
So, I look for anything that will come close to approximating that or at least get me back to some kind of limited shared experience. The rehab offers that option. It allows me to have a routine guided by goals and methods of achieving those goals that also allow me to observe, learn, and improve. It gives me the social experience of a workplace, the future planning for upcoming sessions, and the sense of accomplishment when successful in a project.
It does NOT get me back to the seminars, meetings, activities, and conventions that I loved in the video industry since 1983, but it gets my mind thinking again so that I can find productive and accessible ways to achieve similar results.
Like this blog.
This is written for myself, but hopefully remains of interest (and in some cases useful) to you and those you know. I really hope that you pass it around. I don’t write it to hear myself type, I write it to hear you type back. It is essentially just a new spin on the old art of conversational discussion and discourse.
Never was that more evident than this past Thursday night in Havertown. One really magnificent and loud Thunderstorm came through the Havertown / Philly around 7:30 PM. It lasted well over 2 hours and lingered through the early morning hours. The power went out around 8 PM and stayed out until 12:45 AM. The picture to the side is the best shot I could get with my camera. It is the illumination of a lightning flash at around 9PM. I couldn’t catch a bolt itself, but the illumination from the after flash at night is pretty cool.
What this caused was that the family had to adjust to a different method of conversation and communication during that time. We didn’t stand around the piano and sing turn of the century songs, but we did joke, sing, and play with the dogs (who were terrified by the storm). We found a way to accomplish something despite our limitations. It wasn’t perfect but it wasn’t grinding to a halt.
That is what pulmonary rehab hopefully will do for me. Speaking of which, my body clock got me up in time for the next mornings session despite the multiple clocks telling me multiple times after the power outage. With a stop at Wawa for a breakfast sandwich.
One thing that has been impressed upon me by my rehab specialist at Lankenau is that I need to eat before coming into the rehab. I’ve always been one to not eat when I first get up, but now I have to change that one habit. The most convenient, aside from a bowl of cereal, is my local WAWA. Since I take Cell Cept in the morning and I cannot eat until one hour after I take it, timing is tricky. So I stop, grab the papers and a bite, be glad the Hoagiefest guy is long gone, and head out to park at the hospital.
Meticulous parking aside, I’m actually in a good mood. I go to the volunteer office to get my free parking perk (didn’t need KLOUT for that perk), take a wee pee, and grab my monitor and oxygen canister.
The session is much like previous ones, but now I can see a bit of improved stamina. Still, my monitors don’t like me again and I need to do my blood pressure twice. First up are the warm up exercises and they go well, though the arms in a circle feels a little tougher than normal.
Then to the treadmill, which I am now confident enough to start in motion myself. My goals are to go for 7 minutes at 1.40 MPH. Yeah, eat my dust. Again, we try the experiment of “out of sight, out of mind” on the monitor. The “out of mind” part is easy for me, but the “out of sight” still is slightly visible, so I have to look away from it myself.
The only drawback is that at my walking oxygen levels of 4 ltrs, I tend to hover around 88 to 90 on the treadmill. This is just below where I want to be. She turns the oxygen up to 6 ltrs, and my numbers jump to 91-92. Physically, I really don’t notice that much of a difference, but it shows in my numbers. I am disappointed that (at least for this session) I need to be boosted. While it feels like a step back, the rehab specialist is happy with my results. Until we take the blood pressure, which is lower than normal. That concerns her a bit, so she gets me some water. I drink it like a parched desert traveler, so fast in fact, I expect to see Hope and Crosby and an oasis.
Take a minute, discuss new cell phones and the storm, then off to the Imaginary Ice Cream Making Machine. The resistance is set a bit higher and we go 7 minutes with this. Still, this feels like the easiest of any of the exercises because I am sitting and only my upper half comes into play. I make enough ice cream to drain the cows in Amish Country. However, it does feel guilty to produce so much ice cream on a day when the hospital has a farmers market on site. So, I lecture the imaginary happy children that they cannot have ice cream until they finish their vegetables. I fake sell very little ice cream this day.
Next is the stationary bike. Another 7 minute task, this also seems to work well for me, even though it involves the entire body. I hit my monitor, I hit the timer, I hit the pulseox, and I almost hit the TV because a story about Kim Kardashian’s wedding come on. AARRRGGGHH!
Finally, the weights at 8 minutes, 4 lbs. This is accompanied by a cartoon guide as to how to do each exercise. The cartoons are effective but rudimentary. I find myself concerned that one guys legs get fatter when he lifts the weights above his head. What an odd anatomy.
One note on something that I find extremely hard to relearn, and that is how to breathe. I’ve done it for 55 years this way and I find that I’ve been doing it wrong. My problem is learning the PURSED LIPS exhaling technique. I am supposed to inhale through my nostrils, but that only produces a short inhale. I am either incapable of or apprehensive about taking a deep breath in that way. Then I need to exhale through pursed lips. This is the best way to process your oxygen intake, but damn it, it is hard for me to learn.
I am getting better at it, though.
I do my cool downs, whistle a happy tune (to practice my pursed lips) and check my final vitals. My blood pressure is back to where it usually is, my oxygen level is acceptable, and my sweat is not soaking.
I do get a bit of potentially good news. I had help up on doing the rehab because it has a $30 per visit co-pay or $90 a week. On a fixed disability income, that is near impossible. I sold a couple of things, cut what little I could cut, and decided to start and simply do without elsewhere. However, the rehab specialist gave me information on a foundation that might offer these kinds of financial support for pulmonary rehab patients.
I don’t like to have things done for me unless I have the ability to reciprocate, either now or in the future. As of now, that doesn’t exist and it really frustrates me. At Christmas, I get a much bigger kick out of watching someone open what I gifted them rather than opening my own gifts. So, while this is an odd feeling, right now it is essential, so I ended my session with hopeful news.
That was my day. Deli meat for lunch and dinner, an easy meal deal. Twitterati viewed and answered. What little personal e-mails I get answered. Disappointed by the Phillies. Writing and thinking.
Nothing earth-shaking, but each step holds a promise. Now to capitalize on it.
PREVIOUS PULMONARY POSTS: