[ PULMONARY ] Change Reactions

(Previous Pulmonary posts are listed at Previous Pulmonary/ILD Posts or just click the PULMONARY/ILD button in the link bar)

(A quick note: I tried to keep the tone light but I had trouble doing that, despite rewriting this numerous times. I’ve tried to keep the paragraphs short and segment the portions with line breaks to allow you to more easily read, and hopefully enjoy, these ramblings. Oh, and I left you a couple of my favorite musical treats at the end to leave you dancing.)

Before:

oxygen

And After:

IMG_1694

The” before” picture is my old oxygen buddy, a shoulder slung oxygen tank that I have been wearing since April of 2010. Like Robin, Tonto, Boo Boo, and others, it has been a faithful companion. But, it has been replaced by the “after” picture (well, not the picture but an actual physical thingee), the Invacare XPO2 portable oxygen concentrator. As this blog post meanders forward, this simple switchout of units will hopefully parallel what the last three months have meant to and done for me. At the very least, it will allow me to center my thoughts.

The “four months” I refer to in the title of this blog post are the months from August thru November 2012, a period of time that has been a busy and eventful for the rest of you as it has been for myself, in its own way. These four months are a milestone in my progress. These four months are pure me and where the “me” is going.

August marked the end of my 3rd year of being officially disabled by my interstitial lung disease, even though I’ve had it for an indeterminate time longer. We still cannot pinpoint how or why this developed, other than postulate that it happened as a result of some dust substance inhaled somewhere while working. In any case, for my sanity, that really doesn’t matter anymore. What mattered in August was that, for the first time since I have contracted this, my life would change in another profound way.

MedicareCard

I had to figure out Medicare…

…At age 56. What I had always seen as the( still ) prime of my life. That alone has been enough to dwell on, but then I reached the distinct pleasure of choosing a Medicare plan or plans, which is kind of like choosing from a large buffet menu when you would rather not have to eat there.

bad_buffet

I automatically received Medicare Part A because of all the taxes paid over my 37 years of working. That is essentially the free appetizer, good stuff but hardly filling the plate. If I wanted more coverage, I would have to belly up to the main steam table, where Medicare Part B was on the menu. Part B adds $99 (and soon more) to the bill, giving you more meat but still leaving the plate a bit empty.


There is more to read. Just click here.

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Pulmonary: A Dream Goes On Forever…

I dream in muted color. I know, that is an odd opening statement, but it is true. As I talk to people, one question always comes up, and that is whether people dream in color or not. I cannot vouch for anyone else, but my dreams look like Ted Turner badly colorized them.


But this is not about the “Mouth of the South”, it’s about my dreams. A man with a wonderful world of color, Walt Disney, once had a Princess sing “A dream is a wish your heart makes”. Well, my heart has been working overtime recently. I do not believe I dream that often, but when I do, my dreams come like super packs from Costco, a lot at a time.

Normally, my dreams involve travel or do not take place in my home area. There are people I know and at times people I do not. They are not usually nightmares, nor are they overwhelmingly happy. I’ve dreamed about a Disney World place I was visiting but the area was dull and not overly appealing, leading me to feel a sense of disappointment in the dream.


Recently, though, my dreams have started to focus in on two very distinct areas. The first may not seem so unusual. I’ve been dreaming about my late father, who I lost last January 2011. They have been one on one dreams, no one else that I remember being there. I don’t remember most of the content, though I do remember that in one, my Dad was driving me up I-95 through Baltimore. We were talking up a storm, but I cannot recall what we were talking about.

I’ve awoken from these dreams in a good mood, not disappointed that he wasn’t really there, but satisfied with the experience of the visit. It was comforting to see him again. It made me forget my problems for a night.


The other dreams were much more unsettling. They were extensions of an increased sadness and frustration over being out of work. Those of you who follow me on Twitter or in the blog know how much I miss the work experience. The last couple of weeks, in my dreams, I was laid off from my old video retailing job three times again. Not unceremoniously, not badly, just laid off. I spent many of the dreams thinking “why”.

Feeling useless and unable to affect the situation like I used to be able to do really was present in these dreams. The good thing about the dreams was that I had the chance to address people, both at my job and other professional contacts throughout the industry, and say “goodbye” to them in surrogate person, to their dream image. It was good to have this closure, this chance to both make sure some people knew how I felt about them and to work these things through.

I also got a chance to argue the frustration of just being let go after so many years with my old boss. I’ve not heard from him since before I was laid off, and in my dreams, I got to have a final conversation. It wasn’t loud and it wasn’t angry. It was pure frustration and confusion.

You may notice that these dreams seem to have more details remembered. I figure that these dreams were not made by my heart, but by my mind. They are not wishes, they are regrets and restarts.

Over the last few weeks, as I’ve started to wonder what comes next with my pulmonary disease, I’ve also tried to get out more. Getting out more meant experiencing more people, but oddly (or maybe not), seeing them working, no matter what the job, really frustrated me even more. It started me missing both my old opportunities to create and innovate in my old job as well as the ability to grow forward in association with a shared workforce, a crew to bounce ideas off of.

I try to find this on Twitter and FB, plus other social media, I try to learn as much as possible about what is coming in the world down the road, so that I might be able to learn what is coming next for me. However, that ability to see others at work just drove it home to me. I am guessing that my dreams right now are trying to help me sort my past out so that I can finally move on with my future.

In a future blog post, I will be looking back at what were the “dream palaces” of the 20th Century, the movie theater. Not the four walled quadraplexes of today, but what they used to be and what they used to mean to the world and to me. I’ll also argue why these “dreams” are better than the conveniences of today.

My dreams are helping me figure out how to be relevant again. Trust me, that is a dream that both my heart and my mind are working overtime to solve for me. And trust me again, my heart and mind are one powerful tandem.

Pulmonary Rehab 9/1/11: Earthquakes, Hurricanes, And Steps To Climb

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.

What a week, what a week.

Maybe you’ve heard? My first earthquake, and you knew it was one. We get to joke about it, sounding like a huge truck coming up the street and a flower pot ringing out but let’s face it, we are glad it wasn’t worse (though the speed of the local stations to develop over-the-top graphics and music for it was amazing).

Then came Hurricane Irene and another chance to Twitter and joke about it, but only because the worst we had around my neighborhood was a 14 hour power outage. Irene caused the most damage just when you started to think that the whole storm was a big overreaction. If you don’t believe me, just look north to Vermont.

Of course, all the blowing and shaking coincides with some updates on my pulmonary rehab and my lung disease. While nothing out of the ordinary occurred during it, much good stuff actually happened.

As of now, I am completing my 4th week of pulmonary rehab. It is starting to approach what I hoped it would accomplish. The odd thing might be that while a physical goal was part of the plan, the more abstract goal was what I really wanted the most: to be able to get some real life feel for what my limitations and abilities would be going forward.

I wanted my confidence back.

One of my biggest fears and concerns revolved around how this would affect what I used to do and experience. While I was not a world traveler by any means, I was an active participant in my professional life and a good fun friend in my personal life. I knew my stuff, I am not bashful to say. I shared that knowledge and wanted more. I shared my experiences and wanted new ones. I shared my friendship and wanted even stronger ones.

Once I was laid off and then diagnosed with NSIP, those all seemed to move far away from me, on that very uppermost shelf that you never think you can reach. The chance to experience these again seemed to no longer be an option. Confidence, focus, desire, ambition, and ability all hazed over out of the lack of understanding of exactly where I am and where I go next.

The rehab was in my sights because , while I did not think I would get every answer every written, I did hope that it would point me in the right direction. The rehab is starting to do that.

Take the treadmill. When I started, I did 3 minutes at 1 mile per hour, with my oxygen level at 4 BPS. My blood oxygen level would dip low to 87-88. Three and a half weeks later. I am at 15 minutes at 1.6 miles an hour, oxygen level at 6 BPS. My blood oxygen is 91-92 % . One big difference: my therapist has turned the monitors away from my sight. I therefore have to depend on how I feel instead of how the monitors tell me I feel. That knowledge will help me immensely.

Also helping me is that the gym has Good Morning America on for the 8 AM hour, so I get all the annoying faux-celebrity news and make up tips that even a clown would laugh at, instead of the newsworthy 7 AM sgement. So maybe I am trying to walk away from the TV.

Next up the what I’ve called the “fantasy ice cream making machine”, which I’ve learned is a UBE (Upper Body Ergometer ). This is very similar to when I was a wee lad and would turn my tricycle upside down and spin the big wheel with my hands. There is much more resistance now, except for when I would turn my brothers tricycle upside down. Then all hell would break loose.

I’ve increased from 5 to 9 minutes with increased resistance as well. In this room, there are only the walls and some inspirational posters that are definitely less annoying than HANG IN THERE KITTY posters. There are no monitors, all my breathing and body effort are measured on a self-scoring numbered scale. This causes the least feeling of tiredness and shortness of breath and the most instances of daydreaming since I’ve memorized those posters and every inch of the wall.

The exercise bike is back in the main room and therefore back in view of Good Morning America. Josh Elliot is riding a camel, some woman has 15,000 pairs of shoes and a reporter tells me that dollar stores are cheap. News you can use.

I’ve gone from 5 minutes to 9 minutes on the bike and increased wattage resistance. There is much more visual stimuli in main room but I still manage to stay away from looking at monitors.

The hand weights have gone from 3-4lbs per arm and will be increased to 5 lbs Friday. We have gone from 5 to 8 minutes and I’ve gotten better at not looking like a cartoon drawing while following the cartoon instructions.

Wednesday, we attacked a flight of stairs. Yes, that is a fear, a barrier, and a goal. While I went up one flight and back down again, I was able to do four steps at a time with normal strides before feeling a bit winded. Since this was the first time, my old friend apprehension came back to visit, the fear of what I could not do before I tried to do it.

I did learn that the pursed lips breathing is much more effective than the habitual panting that I have done when out of breath. Pursed lips bring the blood oxygen level up more quickly. Again, nothing earthquaking, or shaking, but a hoop that needed to be stepped through.

One of the great fears and sadness for me has been the thought that I am not only stagnant on what I can do physically, but that I am also stagnant on what I can earn and monetarily help with. I have no desire to be a burden but I do have a desire to contribute on my own when needed. Having the disability check means that there is income every month. Having the ability to cover the expenses can be tough.

I will be meeting with a local foundation tomorrow to see about some help with the medical expenses. I can use the help and support and hope that this is also the step that allows me to find a way to contribute and organize my finances more effectively.

I have a few really great angels in my life right now and right now I can use one more.

My ultimate goal is to be an angel in return when needed. Clarence, I can use some wings.

More to come…

PREVIOUS PULMONARY POSTS:

Pulmonary Rehab 8/19/11: When We Last Left Our Hero…

Pulmonary Rehab 8/17/11: Adrian Is Doing Well. Give Him A Sticker.

Birthday Wishes And Pulmonary Dreams 8/11/11

Pulmonary Rehab Tales 8/10/11

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words

Pulmonary Rehab 8/19/11: When We Last Left Our Hero…

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:

Pulmonary Rehab 8/17/11: Adrian Is Doing Well. Give Him A Sticker.

Birthday Wishes And Pulmonary Dreams 8/11/11

Pulmonary Rehab Tales 8/10/11

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words