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

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

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.

Those were the words that started the rehab specialists report on me today. A gold star moment indeed.

Actually, this was pretty exciting, since coping with the lung disease up until now has felt kind of like walking in the tilted room in the old pirates ship on Hunt’s Pier in Wildwood. Because of the knowledge that I cannot get better from this, the natural human tendency is to assume you will get worse. Defying that human expectation, you try to stay stable and maximize that stability for what now constitutes your everyday life.

Three sessions have gone by since I last wrote about the rehab. Each day has had its moments, and each day has had its discoveries.

I now do a set routine of warm-ups, followed by a treadmill, the phantom ice cream machine arm spinner, an exercycle, hand weights, and cool down exercise. Nothing more exotic than that and nothing expected to be more exotic.

The warm-ups are fairly straightforward, performed without weights, but many are variations on weighted exercise. These go fairly quickly and then we get a blood pressure and a pulseox. My BP has tended a little bit to the high side, but not dangerously so. The pulseox levels have been acceptable after each set of activites, generally in the 91-92 range (my standard at rest without oxygen is 95-97). Note that these exercises are done with an oxygen tank at my side.

I also have the previously mentioned pocket monitor. This still includs putting the sticky contacts on my hairy chest. I now know exactly where my clavicle is because the first couple of times that I put the upper contacts on, I placed them too low and had to rip hair out by the follicles to move them. Ouchies Wouchies.

The remote also seems to want to pick up my breathing more than it is supposed to. My readings tend to look like my Cialis is working for much longer than four hours. No, I do not take Cialis. Just a metaphor, like my non-existent sex life. We have to tape the wires just so, like the old rabbit ears on an old TV set.

Steppie the Treadmill (yeah, I named it. Sue me.) gets me up to speed. The first few days, I was only doing 3 minutes at 1.0 to 1.2 miles. I’ve not fallen yet. Monday, we increased to 4 minutes and 1.4 miles. Today, 5 minutes and 1.4 miles. These may seem to be minor fluctuations, but to me, they are signs of progress, signs that are few and far between for me.

The only problem that I have had is that I tend to grip the handles much too tight, making it impossible for the pulseox to get a good reading. My grip is tighter than a jar lid. In addition, this causes other readings to be a bit off. I finally found a different way to balance and grip and solved that.

Then, my rehab specialist noticed that I was watching and reacting to the numbers on the readout screen instead of simply reacting to my own stress level and breathing capacity. This was solved through a very complex thought process. She turned the readout away from me. Problem solved. Sometimes life really IS simple.

Next to the ice cream machine arm workout, which I am king of. Today, she set the tension higher and I went up to 7 minutes. I was cranking out the frozen custard like Mister Softee on a sugar high. The imaginary kids eating the ice cream were all happy. Now if I could just get their imaginary currency to spend like real money.

Then comes the stationary bike. No stories here, just a bike ride not quite to the level of the Manayunk Wall, but I put my results up against anyone in that race. Will NOT wear spandex bike shorts, however. Nope.

Finally, the weights. These are increased from 3 to 4 pounds. Such a little increase and in my past life would have been baby weights. In this new life, they might as well have been railroad ties strapped to my arms. However, I did all the exercises like the little cartoons told me too. This time, we increased from 5 to 8 minutes. Without telling me. Nothing. This forced me to forget about pacing and to simply do. The option not to finish was never there. I made it, and felt good about it.

I did the cool downs and got a final BP. I broke the machine. It shut down. Or I had no BP. In any case, I still was able to walk out of there, so it’s all good.

Today, for the education class, we had ½ a VHS tape of Pulmonary Nutrition with models who looked like a VH1 “I Love The ‘80’s” Casting Call. We watched half because the rehab specialist was not quite ready to start our main topic: SEX. Seems there is no VHS tape for that. Reminder to myself: Let the hospital know where they can find the sex VHS tapes. At least the session would be well-attended.

She passed out some instruction pages of how to have sex when you have breathing problems. She accompanied this with some remoarks. We all glanced and put them away for later. In my case, probably much later.

We talked about sleep disorders and sleep apnea, which exists in many more people than you might think. It would pay you to ask you doctor about a sleep study, especially if you are overly tired during the day or have recently gained or lost weight. We also talked about drug interactions, which is something I am very afraid of.

So, I made five rehab sessions, and at the end of this one came a beautiful set of words. “ADRIAN IS DOING WELL”. Though the bar may be set low, the elation is sky high when I hear them. It means that something is being accomplished. Something for myself. Finally.

PREVIOUS PULMONARY POSTS:

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 Tales 8/10/11

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.

An actually busy three days, so get ready for three separate posts. Think of them as amazing bites of one monumental post (I hope).

Starting back on Hump Day, or Wednesday for those who did not grow up with Morning Zoo radio programs in your area, I did my second session of Pulmonary Rehab. Today, I also got my first dose of the “education” part. More on that in a blog minute.

I did the same set of exercises today that I did on Monday, but genuinely felt that I did some of them worse. I felt a bit more stressed, felt I needed a bit more effort, and didn’t feel like my breathing was right. It might have simply been that I now had a taste of these and overthought how I was doing.

However, I think it was more that I paid more attention to watching the numbers and panicking before I needed to. First lesson learned from these sessions: I need to simply do what I can do and not worry that I am failing before giving myself a chance to succeed.

I attached my monitor contacts differently this time, since the way I attached the lower ones on Monday caused my T-Shirt to pull up like a fancy theater curtain, and allowed my belly button to take extended bows. This still really annoys the hair on my chest. Damn genetics.

Did the treadmill. For some reason, I took shorter strides and that made me work harder to go the same distance. Of course, I realize this AFTER I am finished. Noted for future reference. I then did the arm pedal/ ice cream machine. This feels more passive though it isn’t. Because it is done in a sitting position, this works the upper body, especially the shoulders and forearms. Still a low resistance level and still serving yummy fake ice cream to screaming imaginary kids (and taking great glee in telling them that school goes back soon).

Did the bike ride. I have to put my sneakers in rubber stirrups on the pedals. Of course, sliding rubber soles into rubber pedals is not easy at all. I have to ask for help from the instructor. Why not just ask help to tie my shoes? Still, I like this exercise, because I used to love riding a bike, and because it is another way to kind of lose myself for a few minutes. This goes well, my oxygen saturation levels (with the oxygen line in my nose)stays at a decent level.

Final exercise is the weights. She still wants me on three pounds weights. Featherweights. I follow the drawings of the exercises, convinced that I need to constantly adjust the way I am standing, holding, lifting, turning, bending, salivating, sweating, daydreaming. I don’t, hence we are back to our theme of the day: DON’T OVERTHINK.

Cool down. Get funky.

Then, I get my first education class of the program. I’ve been looking forward to this because I hope this gives me a better understanding of what I have. This starts with a video that is mostly about COPD, which is not what I have, but there is some basic pulmonary information that I can relate to. This includes the fact that my ILD, or NSIP, is a restrictive lung disease. COPD is obstructive. The difference is that restrictive creates a situation where a scarring on the lung permanently restricts the lings ability to function to full capacity. It is not reversible.

I also learn things that my sister has told me and will not stop at saying “ I TOLD YOU SO”, like carrying hand sanitizer at all times. I am also told about flu, colds, and pneumonia and their inherent dangers.

The two parts to depress me are when I am told that I should avoid seeing friends if someone in their family is sick. The other is that I should avoid crowds. Only way to completely avoid crowds is to take up being a hermit. I need to be social, I need to out and about once in a while. I’ve spent over a year scared of that kind of situation. I cannot fathom a time when I cannot even think about doing that.

Sorry for the bummer ending. I still think this program will have definite benefits in maximizing my abilities as well as improving my mental focus. Still, I also know that I will hear more that I do not like.

The secret will be to tell those parts to fuck off, I’ll still going to get the most I can out of my given life. People around me deserve no less.

Breathe deep

PREVIOUS PULMONARY POSTS:

Pulmonary Rehab 101: 1 Of the Future

Tomorrow Starts The Next Phase: Pulmonary Rehab And Education

Expecting Expectation, Getting Ramblings

Those Three Words