Toning and Trimming, Preparation for LVRS

So in order to have an LVRS surgery a person must qualify, did I mention that before? You have to be able to handle the surgery because it is very hard on the body, or so I am told. I have also seen and heard of those that are completely prepared, only to be sent home because they are 1) too old, 2) too young, 3) not sick enough 4) they are too sick and the surgeons feel that the surgery will not benefit them or 5) the damage is in the wrong area of their lungs, 6) they are too overweight, or underweight (which account for the being healthy enough to withstand the surgery). And I am sure that there are many other reasons such as not having COPD emphysema, and/or having other medical issues that would impede the healing or get in the way of the surgery itself as it might for any surgical procedure.

In order to be accepted a person must be in the best shape possible. Of course the surgeons understand the course of this disease and that usually a long period of time passes as a person declines in health, their lung capacity diminishing year after year long before they are actually diagnosed, many like me diagnosed with asthma for years prior to graduating to emphysema status. Naturally as they decline, so does their body, and as their body declines so does their ability to do the daily things they were accustomed to day by day, year by year, until they become house bound and car bound, barely able to move around without becoming winded. It is a terrible thing to see, much less endure.

I have seen it on more than one occasion, and I have lived it, too. I have hiked, biked, rode horses, water skied, and been very active only to end up feeling like a blob, unable to walk very far without becoming completely incapacitated.

One of the requirements for surgery (in addition to fitting into the criteria above) is to be a recent graduate of Pulmonary Rehabilitation…… Pulmonary Rehab consists of classroom instruction and physical exercise in a wholly supported environment. The respiratory therapist and instructors are the most supportive group of individuals and I feel extremely lucky to be there. I consider Pulmonary Rehab to be a whole body, mind and life style altering course. Classes cover that lifestyle change and it has a lot to do with acceptance that our lives will never be 100% again. But we learn that we can still do things and we learn to make the most of what we do, and alter our lifestyles to enable that to happen for us. And we exercise, like crazy, if we are in the planning stage for an LVRS. Even if we are not planning for surgery, being fit helps everything in the body work better. So we get fit, any way possible. Luckily for me, my Rehab is held at our local hospital which just so happens to be brand spanking new and everything is beautiful! After completing pulmonary rehab, we are then allowed to join a program at the hospital (in the Cardiovascular and Pulmonary Wellness Center) for a very good rate, and we can continue with our exercise program indefinitely. For me this is wonderful because it is my nature to abhor exercise.

My facebook opening statement that accompanies my name says: “If you want me to exercise you had better have diamonds sprinkled on the floor below me…..”

I think that pretty well describes my attitude about exercise. And as far as jogging, I have always been quick to say “If you see me running you can be sure that I am running away from something.” I do not run for fun. I run from things.

I have always been that way. I do not jog because I value my knees, and in the past will opt to swim miles if necessary rather than jogging. I would rather ride a bike for miles, than jog.

There are 2 basic reasons I do not jog. One comes from deep in the South Pacific islands where a friend (a local islander) mentioned once that American tourists would come to visit their island, and these locals just couldn’t understand why it was that those folks had so many invisible spirits chasing them! That was good enough for me.

The second reason I do not jog, is very simple: I have never seen a single person jogging that appears to be having a good time, not a smile to be seen, unless they know they are having their picture taken. (See below, click on the image.)

They look like they are in great pain, pushing their bodies to the very edge, ready to collapse. They run in place at signals they get all sweaty and bend over looking like they are about to vomit. How can this be good for a person? They look half dead or dying. And what happens? The very next day they go back and do it again, and they even feel ill if they do not do it……That, in itself is an indicator to me that there is an addiction present!

Up until August of last year I felt the same way about treadmills. People walk on rubber to nowhere. Why?

Now I know. I walk on a treadmill every single time I work out. I use it to wake my body up, a warming up before I get down to the exercise machines. I still do not like the treadmill, no way. It is a disgusting having to walk on a rolling mat….But at least it is not jogging! I set a countdown timer because I am so reward driven. When I finish the treadmill I reward myself on the other machines, which I do like.

In my gym once a person graduates from Pulmonary rehab, in order to stay fit we must continuosly exercise. The exercise program is called SEP or Supervised Exercise program. We can go in any time we choose from 7:00 am to 7:00 pm as many times per week as we want and we have access to any of the machines and any class instruction that they offer, like Tai Chi, Yoga, Chair Yoga, Pilates, Feldenkrais, Qigong, and several balance classes (this array of classes caters to the Cardio Pulmonary patients and the ilk like me.

The gym is not open to the public unless they have a Medical Referral, though I do believe that there are some hospital employees that can sign up to use it. For a while I was probably one of the youngest persons in the gym! But not any more. However, I am probably one of the weakest members, other than the very elderly, that have assistive devices and such. Many of the 60-80 yr olds are much stronger and this is a real eye opener for me. But that’s OK, because so far everyone has been incredibly friendly and all of the staff are superb and very supportive, and seem to love what they do.

I started Pulmonary Rehab on Sep 15, 2011 and graduated November 3, 2011. I went directly into the SEP program a week later on Nov 10, and have been there ever since, 2 times per week. I have made my own routines always starting on that damned treadmill, to warm up, then directly to the NuStep. After the NuStep I venture out into the other machines, changing up, each time. Sometimes, I use a leg press, sometimes a pull down reverse military press (not sure what it is called) and sometimes I use a core building weight machine. I also use a recumbent bike machine occasionally, and also free weights. I like to push my limits a little bit. Then I stretch.

It is now January 2012, I am awaiting a call from the surgeons to drive up to Washington to confer with them about surgery. I have been working out since August 2011 (5 months!!!).

So a couple of nights ago, I shook my arm and suddenly realized that my flab isn’t there! I asked my husband, where’s my flab. I flexed my bicep and tricep, and proudly said “Look no flab! I have muscle tone!”

Then it dawned on me that maybe I had burned it off! I was in bed when I noticed this. Oh, I realized that by holding my arm straight upward, all my flab had sunk back into my shoulder! HA! No wonder I didn’t see it or feel it wagging…. It had fallen back on to me!

The next morning I flexed in the mirror…There is was, I still had some dimples in my biceps. Dimples as in cellulite. Only a couple but it was still present. I am a lot more toned though! So that is good.

I have joined a group called Better Breathers Club. The Better Breathers Club is actually a nationwide club system, (most cities have them locally), and we meet once a month. This month we had a nice meeting and the 2^nd half was spent in a sample class of Chair Yoga.

This chair Yoga had been recommended to me in the past, because of my weakened state, and as a great introduction to yoga, which is very beneficial to folks with COPD. It was great, and what I liked the best about it, was that it ended with a short meditation.

I need that meditation, because after exercising even though I stretch and relax for a while, quite often I am still SOB. I have had issues with some high blood pressure and one of the breathing techniques we were taught helps to lower blood pressure. The day after the chair yoga introductory, I worked out, and I used the breathing technique, and found my blood pressure lowered! I decided to try taking the chair yoga class, thinking that this is the best way to get some good stretching non invasive and not too strenuous exercise.

So this morning, because the class is early, I came to the gym even earlier than that and did my workout at 9:00AM (oh boy, that’s early for me), figuring I would do my hour of workout, stretch and then go directly into chair yoga, which would give me a slower workout and finish me with a meditation, which sounded perfect for my system.

I found a full tank of Oxygen, I had a brand new cannula, and I got to work….for an hour, then I stretched, and walked down the hall to the class that had just started, and opened the door. I was welcomed in and the teacher set me up with a mat on the floor. Hmm; and I joined in. We were stretching all over the place and I felt things moving in my body, muscles that hadn’t moved in years and I thought to myself “Sheesh, maybe I bit off more than I could chew,” but I kept going...because I am no quitter~!

I could tell that once I was used to this I would get better, and all the women in the group had been in the class for a long time and while I was in my first class I could tell that I would become more limber as time would pass. I sweated, phew, and got some workout, though I did not push myself too hard. The teacher took into account that I have had a cervical fusion and tailored my mat to accommodate this. I had my feet in the air with a ball between them. I rocked on my hips side to side, stretched and attempted to hold my feet in the air while lifting my head…..

At the end of the class, I was waiting for the cool down meditation, but instead of that we did stretching of the right side and then the left sides of our bodies. We balanced. Then the teacher said, Ok that’s it. Hmmmm odd.

One of the women walked around collecting the balls, I rolled up my mat as the other women were doing. And the teacher asked me, “So how did you like the class?” And I answered “well other than discovering a bunch of muscles I forgot I had, it was fine. But I miss the meditation.”

The women looked at each other….And the teacher looked at me and said “Meditation?”

Yes, I said, at Better Breathers Club, we finished with the meditation. I could hear some chuckling beginning.

The teacher then looked at me and said “Hon, this isn’t Chair Yoga, this is Pilates. Chair Yoga starts next!”

oh boy.....

Now me, not being a quitter, I stayed an additional hour and participated in Chair Yoga.
I was sore for 3 days afterward!

*******************************************************************************

why?

Ankle Wraps

Life with a Symbiont

Never assume anything. Of this I have learned.

In the past several months since I have been using O2, I have had to live as though I had a symbiotic being with me most of the time.

The only time I am free from this symbiont, is when I sleep and in the early mornings (on a good morning that is, only on a good morning). For some reason, I have been blessed with my emphysema, if that’s possible. It seems that just about everyone I know that lives with “oxygen requiring COPD,” has a symbiont like me, but requiring it for 24/7. I have never needed it for sleeping. It seems that everyone else needs it at the very least for sleeping even if they do not need it during the daytime, but they still need it for sleeping. For me, it is different. When I started exchanging information with others, whether in Pulmonary Rehab or in our Better Breathers Club (discussed later), I was astonished to find this out, because I assumed we were all pretty much alike. I had assumed so much that when I saw the looks on the faces of the respiratory therapists at my mention of not using 02 at night, I figured I had better ask someone about it. I mean, maybe I was wrong…. Could that be? Me? WRONG? I do seem to use a lot of air!

I run at 3 litres all the time when I am with my symbiont. Others I know are running at the same or even lower volumes of O2, but they still need it at night. I go through so much that I cannot rely on those cute little teeny tiny tanks, the petite ones that might actually be camouflaged as a purse or as hair spray. No not mine, the way mine looks, I could only camouflage it if I were to wear a weight belt, wet suit (or shark suit), flippers, and be riding around on a boat with a spear gun.

So the very next time my “Air guy” came over, when I mentioned it to him, even he kind of looked at me with a strange look.

So he said, “Let’s look at your paperwork. Let’s see what your prescription reads like.” So I got my original paperwork out and we looked at it. He even mentioned he thought most people had it for 24/7 usage. When we looked at my paper work, there it was, clear as the printed carbon copied font.

My Rx is for 16/7. Hm. 16 hr certainly is not 24/7. My allowance is for 8 hrs and certainly, it is not during the day when I am active. And certainly when I put that pulse oximeter on my finger at night, and read 96-97% (without air) I am doing OK. Even when I wake during the night as I reach out from under the covers (trying to move as little as possible), pushing the rubber button that activates my little unit spilling light into the darkened room, the reading I get when my finger is pushed in, usually runs between 95 and 97.

Of course, my oxygen is not that high when I go to bed. When I turn off the oxygen at the big unit, coil the hose up and put it away then walk into the bedroom, my oxygen saturation drops to about 87, which is certainly a “calling” for O2. But when I sit there in a nonmoving state my saturation climbs right back up to a normal level on its own, and if I happen to do some yoga breathing, it rises quickly. And providing that I don’t have to get up and walk around they stay high all night long. So I have never used O2 to sleep with, like so many of my friends need to do.

So this alleviates me from becoming wrapped up like a hose mummy in bed while I sleep. One of the good things about this fact is that it means I am not mummy wrapped 24/7 because I would be if I required the O2 at night. Luckily for me I only get wrapped up 16 hr per day.

I am the Queen of wrap. I can find a coil in my air hose, like a mosquito can sniff out carbon dioxide, like a drug sniffing dog can scent cocaine, and with slippers on, I can scoop up a coil; faster than a bubble can rise in a glass of Pepsi. I can usually feel the cord go around my ankle so I have adopted a certain leg flip that kicks that coil right off my foot as I walk….or so I think. I swear I can feel it fall off and then I take another step, and there it is wrapped once again around my ankle. Again, I flip my foot, this time with a little purpose involved. Next step, it’s still there! Lifting my foot I try to back my foot out of the coil, and then my slipper falls off, and it is STILL wrapped around my ankle! When I finally do kick the coil off, when trying to get the slipper back on, and I usually picked up that damn coil, again. If I reach down to physically remove the coil when I grab it, the line morphs into a straight line, no coil showing anywhere, but the moment I drop the line and take a step, there it is! It‘s enough to drive a person wild! Then it hits me, it’s a symbiont. I need it, like it needs me.

So I figure that the slippers (scuffs) cause this, and I vow to wear my cross trainers from now on. Nope, my cross trainers not only can find a coil, but while one foot hugs a coil the other foot steps on the hose and then both feet are involved.

I must say that sometimes walking out of the kitchen with a bowl of soup, a spoon and a glass of water, can be my undoing, if not just the bane of my existance.

Someday, someone is going to come home and find me wrapped head to toe in my oxygen hose, my food and water just outside the reach of my fingertips , and my curses will be ringing through the air, loud enough to cause the neighbors’s dogs to howl. My symbiont runs my life.

But I get my revenge when I sleep.

I have freedom, because in my dreams I do not have COPD!

Ha! Take that, you dirty symbiont!

Innerspeak

There comes a time in our lives where we are faced with certain facts. When your mind wants to do something that your body cannot, certain things cross a person’s mind. While I can be comfortable watching others do things I cannot, at times when I have to stop and lean on the side of the bed, or the kitchen counter, because it hurts inside so bad, I start to hear the inner words coming out, I am dying. I cannot keep going on this way. Each day I lose a little bit more.

Each time I get sick, when I heal I have permanently lost two or three steps that I had before I ever caught that cold. It is a poignant feeling to realize that there may come a time where I will not be able to sit up and act like I am Ok any longer. People will notice things.

They already do, actually.

But inside I see the value of things that I can no longer take for granted. I cannot go up that flight of stairs. No theater, no baseball game.

The pain is indescribable. Not stabbing, but literally indescribable. My insides feel like they are bursting,

I get claustrophobic. I am short of breath, even though I have a cannula feeding oxygen directly into my nose, while my brain feels the cannula, my reading glasses, my gasp for breath (even though my sats may be 95%), it becomes hard to tell my body that it is operating in its normal state. This is my normal. Right now, right here, but here, there isn’t much of this left. Like I have this underwater tank on my head, I am no longer human. I have lain down on my bed and waited for my inner body to relax so that I can feel like I am getting oxygen, whether or not I actually am getting air. For me to tell my brain that, it is another story.

The very last thing I can do at that moment is answer questions, or to interact. And what happens when I cannot interact? Am I dying? Is this goth?

I call this innerspeak, and it is a personal conversation that I have with myself. I have no control over this, and even though I do not like it, the innerspeak comes to me as though I am talking silently to myself. I write about this now because I can still feel it at times. I want to get this out while I can still remember it, because I am getting stronger now and it is fading back into the dark. And that is good.

But I must be mindful just in case it rears its head again, because it may.

Since I have been in rehab, I have been physically working out and becoming stronger and at that same time my innerspeak has been fading away. So I assume it has something to do with realizations of life and death.

My innerspeak does not have anything to do with anyone else. It has only to do with me. And like a dream that starts to fade as soon as we wake, it does that too, as soon as I start to feel better. Is it God?

I am sane, and this has nothing to do with anything psychotic or paranoid or schizophrenic. There is no fear. It is like a happy/sad. It is poignant. It is as though I ask myself how long can I keep going? I can see the end as a tunnel that gets smaller and smaller. I don’t want to see the end, but if I cannot get my body to do any more, what is the point? The time between waking and the inability to move around gets closer and closer together, what is left for me? Oh I am dying, I am dying. I am totally lucid, but my body is not doing it for me. Shouldn’t I at least be dizzy? I am not. I can sit here and not move a single muscle. But what kind of life is this?

I have to talk myself down. I have to talk myself up. I look out the window and see people having a lot of fun, and I could say I have already done that, I know the feeling, so I can draw on my memories. I know how it feels to be skiing and have the air hit me in the face. I know how it feels the dive into the pool; to swim. I know what they are experiencing, as I have felt it too.

But do I want to feel it again? You bet. But can I feel it again but without pain? Not yet. Not yet.

Depression can and does start to invade my thoughts. I get asked what I am thinking. Nothing, I say. How can I say to another person that has the ability to walk freely, to run, to dance and skip, that I long to do that too, but that I would rather not cause myself any pain right now, so I am OK with sitting and watching, especially since I know how it feels because I have done it before.

Will I always have to draw on my memories?

I live vicariously.

I love my family and want to spend all of my life with them, and to think that I may not be here, well it is purely unthinkable, so I do not think about that. I will always be here. That hurts. I do not have time for emotional pain. I will not allow the emotional pain. Dealing with physical pain is enough for me. If I allow emotional pain I will surely crumble and I cannot crumble. This is not the time for that. This is the time for healing. And as long as I can keep working out and getting stronger the innerspeak gets weaker. I am good with that. But I feel I must log it here, while I still have some left in me, because I believe that after my surgery; after I get better it will be forgotten and I think it is important to know what I have been dealing with when I look back at this time.

My Leash in Life

(originally written Nov 19^th 2011)

Like a dog on a leash at a full run that stops short when the slack runs out, I live my days stopping and going stopping and going.

If I could count the times I have had to retrace my steps just to un-kink myself from a doorway, the corner of a rug, or the edge of the refrigerator, I would lose the number in my head because I really can’t be bothered when I am on a mission.

But I can’t be on a mission if I can’t get there from here, now can I? Good thing I didn’t have to pee this time. I could have had an accident. As it is, I am lucky I had that cervical fusion (neck surgery) back in 2002 or I’d be having it now, what with the whiplash I almost gave myself a little while ago.

Running into the kitchen I just expected to look, to see if the cat was still sleeping on the kitchen floor. This is where she hangs out now that she’s a billion years old and almost unable to walk anymore. Every time she sleeps we have to walk up to her and check to see if she’s still breathing. And if we can’t tell by simply looking, we almost have to nudge her with our toe just to see if she responds, since she sleeps so deep at her extended age.

And this is exactly why I ran into the kitchen in the first place. I heard a noise that made me think she was living her last breath tonight. Was it a death rattle? Perhaps that breath was mine, camouflaged as hers, I don’t know.

What I do know, is that I rounded the corner and came within range of our kitty, and just as I was about to reach her, my chin whipped around as though the back of my head had just been slapped really hard, my forward motion stopped short and my body was jerked back, head first, my arms and legs following, as my leash extended its allowed length. Don’t get me wrong I had more leash, I just got caught; there must have been a kink or a bend or a table corner jutting outward.

Stopping dead in my tracks, I look back over my shoulder (not too hard considering my face was already half turned backwards), I espied my line; it’s clear, not green and that means I am caught in the doorway. Flipping my line with my newfound ability to whip and undulate it with a grace and beauty that only a cowboy using a lariat can achieve, I send a horizontal ripple down the line expecting freedom as soon as contact is made.

As the snag breaks free, in a smooth motion I continue on my way another 3 or 4 feet until I am jerked back once again. Now, I know I was free because I had shaken my line loose, but here I am, caught again.

I tilt my head back and realize that the braking is farther back down the line than I had originally thought in the first place. So I must retrace my steps back past the refrigerator that offends me so often; back to that damned door that wins a close ‘second place’ in the “line game,” and then around the corner into the family room only to discover that what has been holding me back the whole time was the corner of the coffee table. Arrgghh.

Calmly (because it really does no good to get mad at an inanimate object), I backtrack myself and this time I apply a vertical whip and the coffee table releases its grip and I am again free, to move forward and check the kitty, which has now awakened and repositioned herself in a new death pose, as she dozes back into her oblivion. All of this happened, because she made an odd sound that I couldn’t ignore.

You should have been here the night I sat talking to my girl friend on the phone until the late evening (which evolved into the wee hours of morning), discussing girly things from 30 years ago; high school dances, and this & that, only to hang up then rise to put the phone back in its cradle. I suddenly found myself on a shortened leash, shorter than ever experienced before.

So rather than fight my (now 6 foot) leash, I sat back down and relaxed until the shortness of breath passed. From my reclining position, I leaned backward and reached for the table lamp’s switch flooding the darkened room with its soft light.

In my deep conversation that had gone on for so long, I had had chores that needed to be done, accomplishing them with one hand on the phone while the other hand was filing dishes into the dishwasher, cleaning the coffee table, putting things away in the kitchen, and returning the clothes that I had folded, back into the laundry basket.

After I had recovered from the SOB, I stood up, and I was surprised to discover that the reason I was on such a short leash, was because it had wrapped around my coffee table three times! Three times!

Again, like the dog on the lead line attached to the tree, running around and around until all that it had left was 3 feet of freedom, having to wait until someone comes along and to help the poor critter backtrack its way to liberation; such was I.

I have also found that it is not necessarily the best practice to wait to go to the bathroom until the very last minute.

I have learned that every single time I get up and quickly move toward the bathroom it never fails that my line will get caught up on the corner of an area rug; you know the type, the ends sometimes curl back from foot traffic. Yep, they always catch me, and half way through the bedroom I am stopped dead in my tracks once again, and it always happens when I have waited a moment too long, so that by the time I am lifting the line off the corner of the rug I can feel the burn, and then I have to double time my steps to the john.

Another john issue I have run into is the length ‘angle.’ Nowdays, I have learned that I need to plan ahead and make my transit to the john with my line coiled up in my hand, kind of like the ski ropes I held when I water skied from a shore start position.

When I water skied, standing in calf deep water, with my other leg in the ski suspended on the water’s surface, I would hold loops of slack line coiled in one hand, and the ski handles in the other hand, and when ready, I would give the signal to the pilot of the ski boat to “hit it!”

As he punched that throttle up, it shot the boat across the water and in perfect timing I would toss out the coils just as the slack was being pulled out. I would then step the ski onto the surface of the water at the precise moment so that if I sank at all, the boat would pull me right back up and plane me over the water’s surface. I could then commence to ski around the lake.

Well, those coils in my hand were what made that feat possible for me, just as the coils of line in my hand now make it possible for me to have a smooth run to the bathroom, especially if I am in a hurry to go.

I can toss the coils out as I run and if I toss them just right, it becomes a ballet in tennis shoes and I never trip or even worse get the line wrapped around my ankles (another common misadventure to be discussed at a later time), and it becomes a smooth run for me

….until I find out that I hadn’t checked the distance of line that I had had available in the first place.

I don’t always start that coil at the base, I sometimes just reach down and coil the line from where I am standing.

When I don’t have enough line it is like stretching the garden hose to water the garden, only to find it is 6 feet short and then, what do you do? It’s not going to reach, but you need to get it there anyway. With the garden hose, do you stop and get the water in your mouth and try to spit it toward the garden? Or do you go back and either get a longer hose, or a pail?

Well for me, as I round the corner toward the bathroom, and run out of line, do I keep trying anyway? Back myself into the bathroom (as though I can leave my head sticking out the doorway while trying to stretch my body out), getting my butt over the commode at the same time?

Well, that’s not going to happen. So I either end up back tracking all the way back down the line to find out what's holding me back (since I have ample line available) or I rip off my face gear holding it in my hand and go without it (which I have done more than once, or twice, or ten times), and even then sometimes I still don’t reach, and end up dropping the whole damn thing to the floor all because I waited too long to go, and it became a mini emergency for me.

Even then, I can get relief and be somewhat comfortable and not move at all until I have finished and can reclaim my headgear, and sustain myself once again, because of course, now I have SOB. Once I have my cannula on, I then sit on the bed for a moment to regroup, relax, replenish, and be ready to go back into the world (only takes a little time to perk back up). So I rise up and calmly walk into the hallway to emerge and join everyone in the family room, only to hook myself up on the dresser drawer knobs now, and once again, almost rip my face off.

All of this I do for oxygen…my oxygen line. It follows me where ever I go, it controls me, it teaches me a harsh lesson if I am not paying attention.

You see, I am like a fish out of water only in reverse. The fish will flop around if you take it out of the water, yet if you return it soon enough, it revives to go on once again, but it cannot live for long without water. Even though it needs oxygen it must get its oxygen from the water. Even though I need oxygen, I can no longer get it from the air, I need it in the form of pure oxygen, from a tank, or I will end up flopping around. Such is life on an oxygen line.

While it is quite often comical to watch, it remains a cynical and sometimes painful way to exist.

A Teachable Moment

One day, I was at the store walking through the grocery section pushing my cart gathering things I had on my list. I was wearing my O2 and had my Marathon tank in the seat of my cart with the tubes coming up to the nasal cannula I was wearing.

I had been wearing this contraption for a couple of weeks by then, and have had fun telling the hubs that if anyone asks why I am wearing this, I would just say something like “Well, I cannot survive in your atmosphere without it.” Hahaha Funny joke, but the joke ends when I am facing this young child, a girl about 5 or 6 who is out shopping with her mom.

Now her mom just ignores me, purposely, but the child just looks at me and I saw her hand immediately go up to her own face and traced an imaginary line up her cheek right where my tubes lie on my face, all while never taking her eyes off my face. She never said a word, though she did tug at her mom to stop and look. Mom just kept walking, ignoring her and avoiding my eyes.

The question was, did mom not see it or did mom see me and decide not to explain to her daughter? Of all the people I have walked by; of all the people and children that have seen me and not “started” or reacted with a sudden stare, this one child that did, her mom just continued onward. It made me wonder if Mom might see it as confrontational (even though to me it wasn’t nor was it negative), but it is not for me to determine how Mom saw it.

I have been around children of all ages and for the most part find that they are curious and not scared unless someone has taught them to be scared. I took the child’s reaction as natural and curious and I did not feel that she was scared, or freaked out, in fact I felt as though it was a perfect moment for teaching.

1) Time

From 7-23-2011 -----

The reason I am doing this is all about time.

I am running out of time.

I am not trying to bore myself, but if I can give myself a place to go back to, it will be somewhat cathartic for me because my history has been such, that I write things down though I may not realize how profound my thoughts might be until much, much, later and after the fact.
You see? Right there is one of those profound things. This is all about time, and yet, I admit that I may not understand until much much later.

‘Much, much later’ I may not be here to understand my own words, not that it is of my own choosing, but my body is giving out on me a little bit more each day. I am lucky in that I can still walk, and do a lot of things that others in my condition can no longer do, but I certainly realize that the day will come when I can no longer do many things that I take for granted now. I am thankful for that.

However, at the same time, I am in full realization that in my present condition I can no longer do things that almost everyone else around me can and do take for granted. It becomes apparent when I am included in my friends' plans to which I must excuse myself. It is not their fault, and their embarrassment shows as suddenly as the awareness floods through their senses. And sadly, because of their discomfort they either stop including me in their plans, or avoid discussing them at all in my presence.

Happily, it is mid-summer, the days will soon become lazy, but right now we are in a fortunate situation in that summer is still fresh in the Pacific Northwest, we haven't had any of the terrible heat dome that the rest of the country has been experiencing. Our lawns are still green with the only brown lawns in the neighborhood being those that belong to families that practice the art of "urban dry-land" gardening as their main method of yard care.

It is the season of play here in my locale; and everyone is doing their best to fill their "off "times from jobs and professions, schools and educations with their needs for playfulness, recreation and joymaking. No one can fault anyone else for that, I certainly don't, because I feel and attempt to do it too!

Slow and easy....paced and experiencing it in my senses one drop at a time.

While I can't get there with them, I can sit and experience the feeling of the memories from my past, and the places I have been, while still collecting some peace and solace. There is always a trade-off.

Aside from the fact that I love to camp, hike, water ski, walk the dog, go out dancing and do all the things my friends do, simple things like walking down to the mail box, diving into refreshing swimming pool, standing in the breakers at the ocean’s edge, or even climbing up into the branches of a tree; some of my favorite places to cogitate, I can no longer reach. Too bad I cannot fly.

On my Facebook news feed yesterday, Katie asked the simple question: Invisibility or Flying?
She had had no response from any of her friends at that point so I became her first respondent, and to me it was clearly a no-brainer, defined to her in one simple word: Flying. I am already invisible, and it is clearly no walk in the park. Being invisible is lonely.

Not only do I fly in my dreams, I have taken others flying too. But in this life, right now, if I could fly I could reach the places my body can no longer take me.

So I must rely on my memories, and by that I don’t just mean the sights and occurrences that I have stored within my mind, for they also include the sounds, the scents, the colors and especially the complete emotional package that goes along with each memory that I have safely tucked away in its own eidetic mental envelope.

It is all relative anyway. The faster I move, the less I will see.



2) A Dream, Realization, and the Final Absorption

... from 8/12/2011...

In my dreams, I was cutting hair. I knew I was retired, but I had returned just to do a couple of clients on a Saturday (I think).

During one haircut which was turning out beautifully, and we were both very happy with the appearance of the young woman’s hair; I had finished the line, dried her hair with the preliminary styling and was just starting the overhead shaping and blending of the layers, when I turned to the counter behind me to get a product. As I turned back, I saw my client had gone and was now at the front desk paying for her haircut even though I wasn’t done blending it yet. She thought I had finished, so she had taken herself to the desk, and was leaving.

Then, I was in the midst of a guy’s haircut, I went to the dispensary, and as I entered, the lights were out and it was pitch black in the room. So I turned the lights back on and walked in, and in some way it became clear to me that the Salon Owner had gone home. I left the dispensary and returned to the floor and to my client. Now the floor was dark, and each room I went into was dark (even though it was still daylight outside) and when I tried to return to my client, in each room I entered I turned all the lights back on, while passing through.

At one point, I was outside and in an alley behind the salon, and as I was walking back to the salon, I had to walk into the neighbor's business and through it, to get there. It was an outside shop, some type of manufacturing company of metal auto body and car parts, with thick gray corrugated steel walls partially in the shade and partially out in the sunshine. In my hand I had my shears (my exp $500 shears), and as I looked down into my hand I noticed that that the shiny metal had shattered. The only thing left was one blade and the 2 finger rings. The second blade was in pieces. As I walked through the business next door, I found a single edge razor sitting on a metal block and I picked it up thinking it was mine, until I realized it was 2” long instead of the normal 1/2” or even 1!” I muttered something to a woman there (one of the owners) something like “Oops, that’s not mine,” and I set it down and continued onward.

As I left that business to enter the salon, I saw my client out behind the back of the salon walking away through the parking lot and across the alley. He also had thought I was done, had paid and was leaving, satisfied. I was not finished. I tried to call him but he didn’t hear me, so I jumped into my car to catch him at the alley and as I was about to reach him he turned into a residence and met up with his friends and they were all walking away, joking and playing and continuing on with their lives. I gave up and went back to the salon which I found, once again to be dark with the lights turned off and everyone gone.

I called my husband on my cell and told him I was done and that I’d now be on my way home.
I guess I really am retired.

In my dream, I was having a problem with the realization that I was actually done.
Is this what happens when we die too soon? Do we continue going through the movements, attempting to keep in the same day to day pattern that we are accustomed to?

3) This is me, and where I am.

...From 10/7/2011....

~~~I Breathe~~~

After being a hairdresser for 28 years, and living the good life, with all my friends and coworkers, I have now found that I have emphysema. I smoked, I danced, I partied, Life is good. I got it all out of my system before settling down to the family life.

In 1995, I quit smoking when the signs of asthma showed up, and had to make the choice, Smoke or Breathe. I decided I would Breathe.

I guess 28 years as a professional hairdresser was probably just like continuing to smoke, because now in 2011, I have been forced once again to make the choice: Work and die young or quit work and live as best I can.
I quit in order to live.

Being diagnosed with severe emphysema (which means COPD) was a bit of a downer, I have to admit. But things could be worse, I could have been forced to listen to elevator music for the rest of my days or work in a customer service desk at a certain discount department store (again).

Well, I am still alive, and I will remain alive as long as I can. I will not leave this Earth easily. Besides, there are some people that I still have to "out do" so leaving early just isn't an option.

At this point I have had initial testing, and I've completed additional testing requested by the surgeons. I think they're evaluating my test results, and sooner or later they'll contact us, and we will start the surgical process.
I figure that if they had found something wrong or something that disqualifies me, I would have heard from them by now. So I guess I am still a candidate for surgery.

I have a slim idea of what surgery entails, but not how long I will be there, nor do I know all the risks involved.

In fact, all I do know for sure is that just prior to the surgery I will not be able to eat or drink for about 12 hrs, they'll stick me with an IV port, then I'll drink their KoolAid and go to sleep.

The surgeons are the masters at what they do, and it is my job to make sure my body does as its told and that mentally, all I have to do is sleep the day away.

And when I wake? jello. And my life begins again... and they'll probably have me up walking the next day, especially if they put the coffee at the other end of the room.
Right now I keep my fingers crossed that I will remain a good candidate for surgery. I have to fit their criteria.

This is the first time in my life that I have been told that my young age works in my favor...go figure. I am suddenly young again. In fact yesterday, I was called "kiddo."
Well, that hasn't happened in about oh, 30 years or so. It's an interesting perspective, after being the oldest at my job for so many years, I am now the youngest of my peers.

What do I want from my friends? Prayer always feels good. Laughter works good.
Support feels good. Double Latte's feel good, too.
Above all, Love works.

I have a great family. I am married to my best friend, my loving husband with 3 great kids.
We have 2 cats, a fat one and a skinny one, and occasionally a big dawg comes to visit.

I love pounding on metals, and making baubles to wear, and I collect rocks and gems here and there.

4) Breaching a Seal

Ok, so I have now breached a seal so to speak. I am now on oxygen.

I fill the tank from the big “in-home” tank and then ‘me and my pack’ can go for about 4-8 hrs. I have found that when it runs out, it literally runs out, no matter where I am.


I loved standing on a ridge top looking out over a valley below, after hiking there on trails.
Snow and sand are completely out of the picture for me now.


How does it feel to be without breath? I measure distances.



I can physically feel the air moving in and out…, it’s just not absorbing. Another symbolic gesture I had to face.
A person does not forget things when you have only 10 steps of energy to use up, you gather what you can in your hands and arms and carry everything you will need because there is no going back to get things.

If there is no energy, one cannot carry too much weight either, so it becomes a damned if you do, and a damned if you don’t situation very quickly.

Another thing I have taken for granted over the years: staircases, and inclines.

I never thought much about walking up a slight slope.

I do, now.

And the biggest awareness to absorb…I am physically disabled.