653 Days And Counting...

Well, well, well, it has now been 653 days since my surgery, and I am doing well.  I am not cured, I will never be cured, but I am free!


I am free of the oxygen hose that I used to need to keep me alive. No more fish flopping around out of water unless I do something really stupid like vacuuming or cleaning house.  Ha Ha. Just kidding.  Ok, well, not really. I have used the vacuum cleaner several times. Especially since we got a couple of new cats; one of which has long black hair.  I still resist dusting because it affects my breathing when there are particles in the air.

I have even climbed staircases a couple of times. Sure, I huffed and puffed when I got to the top the first time, I even had to sit down for a spell, but after a couple of minutes I was able to stand up and walk away....  right to a restaurant where I sat down and ate a nice delicious meal.  I have taken a couple of long steep stairways, short wide stairways, groups of stairs.

I can go out at night now and not have to worry about running out of oxygen. I have color to my skin once again! I actually grew my hair out and can now reach up with my arms and ponytail it up high on my head once again.  Reaching up with both arms has been an issue of mine for a long time before surgery, and of course after surgery it wasn't even allowed for a while.

Before surgery I could have cared less whether I had brushed my hair, and because I was a hairstylist for about 30 years prior to this, it was a huge issue for me, and a very depressing situation for someone that likes to appear "put together" at all times.

I even wear real clothing now, during the daytime hours (most days, that is). No longer are sweat pants and T shirts my staple wardrobe. I even bought pants with a placket front rather than elastic all the way around. Sounds weird but when a person can't breathe one thing that becomes apparent is comfort and anything that is binding becomes the devil, and that includes bras, too.  And no one wants to see that....believe me. Not even myself. I still think of myself as a svelte woman in a tiny basic black (or red) evening dress in 5" heels.  Not happening. 

ok, I really don't look like this on the outside, but I still do, on the inside.

I have worn heels (boots with 1.5"heels) several times, but I have found that heels take the breath out of me, even today. It is much better than before, when just standing and holding my own weight upright for any length of time left me breathless.

So many things I take for granted these days. And that is good, because even though most people consider taking things for granted only leaves a person susceptible to a let-down later, for me, it is a boon!  If I am taking things for granted, it means that I am no longer constantly having to adjust my life for my oxygen intake.

Don't get me wrong, I am not completely free. I still have an oxygen tank here at home, but my consumption has dropped considerably, and the only time I use O2 continually is when I am working out at the gym, because the very last thing I want to do is to rob my body of good clean oxygen when I am exercising, especially since my form of COPD is the type that causes my oxygen saturation to drop in direct relationship to my activity level.

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It's January 9^th 2014,  I am now finishing this post because time has elapsed and something new has come up.

It is time to pay it forward.  A colleague of mine has received some information regarding her own pulmonary adventure, and now she's about to start her roller coaster ride...

 ...And I want to be there for her when the ride comes to it's first resting point.  I didn't mention that this roller coaster, keeps going, did I?  Well it does. The ride goes on, there's just no get-off points. Sometimes its those small, smooth long humps (and those are our goal), sometimes it dips and drops in a nice even undulating fashion, then there's those high ups and downs, the ones we crank up our oxygen for, and then there's the Gforce types, the ones that twist and turn and sweep your breath, leaving your head in a spin.. For those, we have Zithromax......!

Sleep Aways and Face Nooses

Sometimes I wish I would just sleep the time away.

It would be so easy. No air hose to get caught on the corner of the hutch, no having my head yanked back, my ‘face noose’ tightened around my ears and nose when I come around the corner and in sight of my goal, whether or not I am carrying something that is heavy . So maddening it is to know that I have ample length of air hose but I still cannot get where I need to go, all because of a rug’s corner, a wheel, a dresser knob that seems to jump down and grab the line every single time I walk by. Sometimes it's my own darned leg! How does this happen?

This air line can wrap itself around my leg before I even enter a room! And if I have my shoes on it always seems to lay itself down just before my foot steps in acting like a bear trap, set and awaiting my ankle’s arrival so that it can jump up and snap shut on my leg affixing it within its grasp.

Earlier, I was in a great mood, happily discussing whatever subject came up, and as the day has continued onward my elevated mood has swooped down lower and lower, far enough down that when I was in my laundry room transferring my wet laundry from the washer to the dryer, with my air hose and cannula hooked onto the dryer door, because after I walked all the way in (I even checked my length before I left the adjoining room) my air line got caught anyway and ended up stopping me dead in my tracks just 2 feet shy of the washing machine, causing me to doubt the actual length of my line even though I have been able to walk that far many times in the past.

I transferred my laundry in the actual room air, slowly but surely squeezing any remaining oxygen left in my lungs out of them, and leaving me gasping for breath. I tried to grab the remaining laundry before I had to madly grasp the cannula as I bent down, fumbling to fit little clear rubber ends into my nose in my ridiculous panic to get oxygen. It can be so maddening at times, because I was sure I had had the length available. After I finished stumbling over the plastic laundry basket that stood between the dryer, it’s door that held my cannula draped over the corner, and my feet as I was bent over to reach it, I vowed to backtrack the air line as soon as I had my breath back.

I did, and I found that a small loop in the air line had caught on the bottom of a door causing the air line to withhold about 10 feet of vital oxygen line that would have allowed me to reach my goal and not have to go through the painful agony of going breathless once again.

After experiencing the battle with my face noose and my oxygen deprivation, I had my fourth experience (in a row) with the cat who was meowing to get me to let her out the door, only to balk at the last minute while I stood there watching her with the slider door held open with my hand, I swooped down and picked her unsuspecting body up in my arms and swooshed her out the door. In about 3 minutes, she’ll be begging to be let in again, I’ll bet.

The clock ticks on.

Showers and Surges

Castle Geyser in a steam phase

I have now sunk another step. The shower. I now need oxygen for a shower. Well, it is not that I require oxygen, but I have found that if I want a comfortable shower, I had better climb into the stall with the hose on, or it becomes very uncomfortable very quickly.

The warmer the water is, the more steam there is. The more steam there is, the more moisture gets inhaled into the lungs and let me tell you, when a person is not getting good airflow a little moisture is definitely not going to help any.

The same thing happens when we go outside into the frozen air. To have icy cold air get sucked into the lungs, like with asthma, the lungs do not relish the treatment we give them, and with asthma sometimes they rebel with an immediate clench, as an asthma attack.

Since I am not the type that has immediate asthma attacks unless I have inhaled noxious fumes from stuff like naphtha (spot remover), I don’t usually recoil. My attacks seem to come on in a more gradual way, none the less, they still arrive with regularity when I change atmospheres too suddenly especially when there is a wide degree of temperature change.

Well, in the shower it happens too. I have known this for a long time and in the recent year or so, it has become much more apparent and I must be very careful.

I had not had a good shower in a very long time. It seems that the moment I get into the shower my strength starts to wash down my body and start seeping down the drain under my feet. Washing my hair using my arms especially up over my head zaps me faster than anything else, and it feels like I need to get done as soon as possible and just get out so that I can sit down to recollect my breath.

My shower has the little benchy thing, though it is covered by a myriad of bottles and little jars of shampoos and conditioners in about 14 different flavors, brands, types and scents, and this is a humorous thing since there are only two of us using this shower and one of us doesn’t even have his shampoo on the benchy thing anyway. But even if all of those bottles were not on the benchy thing, sitting on it while the water is flowing really doesn’t offer me any relief. The water at that level (when sitting) then hits me in the face and the temperature would be the same anyway.

So here I am, attempting to sit on the benchy thing, bottles spread apart threatening to scatter this way and that way. I find that most of them are half empty, and why I don’t throw them away, I cannot say. Perhaps I have separation anxiety. Perhaps I know (inside) that if I do throw them away, I will have given in to the benchy thing and will now have to face my disability once again, because as soon as I clear even 1 square inch, I replace it with something new.

Unfortunately, my most recent bottle of shampoo is a rectangle that sits on its flat side with the pump on top so that just doesn’t work down there on the benchy thing, so it ends up on the ledgy thing that looks like it is supposed to hold a bar of soap except that if one tries to put a bar of soap on it the bar inevitably slides right off, slithering down to the benchy thing then onward to the floor of the shower inevitably denting a corner up. And there nothing worse than a dented bar of soap. They just don’t work right when they’re dented.

My shower even has the “hold yourself upright in the shower” bar, made for those that have had a little too much to drink or for when their mom is borrowing the shower… which in itself is a weird concept, though I will admit to having it happen before in my bathroom.

I have had to resort to holding that bar, but not to keep myself upright, more like to give myself a place to hold onto while I lock my elbows so that I can stand in the stream of water without having to support all of my weight. When I am short of breath just holding my own weight up can be taxing on my ability to breath.

So I attempt to give myself some relief while the water tries to drown me with its intermittent droplets of torture and steam attack.

I used to love getting into the shower where I go into my make believe world; a place where I could be without everyone in the household constantly asking me questions or making requests, even if my reprieve would only last for several minutes, it would seem like an hour to myself. And when everyone was gone from the household I could sing at the top of my lungs and not care whether anyone walking by out at the sidewalk at street level could hear me. And I could cry and no one would be the wiser. Try that anywhere but in the shower and someone will always inquire as to what is bothering you.

In the shower the eyes can get red, a person can cry, (as long as they’re not wailing too loud they can pass it off as singing) and blame the red eyes on shampoos getting in them. And if I had the freedom of time on my hands, I would love to stand in the water after finishing all the usual things we wash and condition and just allow the water to run on me and then place myself in a masochistic state as I would slowly raise the temperature one increment at a time until I could almost stand it no longer. Only then would I emerge from the shower all red and radiating. There was a time when I would leisurely dry off and then walk throughout the house nake…oh never mind.

Until I started taking my air into the shower, I would get in and immediately get short winded but I could deal with that as long as I didn’t move. Of course, it’s hard to shower without moving. My first course of events has always been to wash my hair and it is a hard habit to break. But raising my arms is the hardest thing on my lungs, and that would be where the hand rail would come in.

I would have to hold it as though I was using a walker just to try to allow myself to relax, and let my heart beat drop, something difficult to do when a person’s body is reacting all on its own to hot water and even worse, steam. There have been several times when I have actually stepped out of the shower dripping wet just to sit on the commode to catch my breath…. And then I start to shiver. Oh, did I mention that any sudden shift in temperature can fire up the systems to cause a shortness of breath? I’m damned if I do, and damned if I don’t.

As a hairdresser, I was always seeking the perfect combination of hair products. But not anymore, no not anymore. Now, not only do I use whatever is in there, I could care less how it makes my hair feel. I wash my hair as quickly and easily as I can and get the heck out of the shower.

There is no time spent drying myself anymore. So soft towels slowly moving over my skin, no time spent covering myself in emollients to keep my skin soft. No, I have no breath to do that anymore. Now I step from the shower directly into my faux terry cloth robe and tie it at my waist, and immediately walk out of the shower and into the cool bedroom where I can immediately sit on the edge of the bed to collect myself and drip dry inside the robe.

I only spend enough time wrapping my hair in a towel anymore and I am already short of breath, because even with the air on I still get short of breath. I usually return to the bathroom after I have regained my breath, and it is on that trip that I use the deodorant, comb out my hair and if I still have my wits about me I might even use some cream on my skin. A far cry from what my method was just 3 years ago. Back then, I would disappear into the bathroom for a shower only to emerge 45 min later all made up and ready for the blow dryer. Not anymore, no, not anymore.

I found out about the air in the shower one day, when I was talking to other COPD people at the gym and one mentioned the hose in the shower. “Really?” I said. I thought about it. Some of these people are in need of O2 24/7, so how were they managing the shower?

I found out that there is virtually no reason not to take the hose in with me…. Yea, why not? The worst thing that might happen is that water might run backwards down the outside of the hose and puddle on the floor. Heck, that happens on its own if I don’t have the door completely sealed off, so I tried it.

I had my shower back. Well, at least I had it back to about 2 years ago. But that was fantastic! It felt so good to have the ability to breathe again in the shower. I can wash my hair at my leisure now. I still run short of air, but it is not like I am drowning anymore! I am so happy!

I can wash my face and actually put it directly into the shower stream to rinse it again. I haven’t been able to do that for over a year. I mean who in their right mind would put their face into water when they cannot breathe? It becomes a vertical water boarding immediately. And the worse thing is, I would need to leave it in the water long enough to rinse the suds off. When I can’t breathe, and can’t get air, there is no exhaling or holding the breath, so it is immediate body panic, an automatic thing…the innerspeak I wrote about in the past becomes an InnerScream, a screaming of my own voice in my head, ironic, since I would not even have a voice if I tried to actually scream at that point.

Luckily the InnerScreaming stops as fast as it starts once my head is withdrawn from the water stream.

Now that I have my hose in the shower with me I can actually put my face in the water again. Of course I do have this “thing” on my face, so lathering has its hinderance, but that’s OK and I will put up with it. I can always wash my face in the sink without my cannula on if necessary. And oddly, I can still neti – pot, but it’s probably because I am bent all the way over on my elbows and leaning on the sink.

Did I mention that I have not brushed my teeth in a standing position in years? I am always on my elbows at the sink. Even on a good day, I can start standing, but with my 3 min timer on my Sonicare, I can last about 2 min before I need to sink down to elbow level to achieve solace.

My elbows have turned colors over the years. They now have what appears to be purple bruises on them. This is from always leaning forward on them. I sit in a tripod position most of the time. This happens from sitting off the front edge of a chair or the sofa just to keep my airway open and as straight as possible. My legs above my knees also have dents worn into them from my elbows always being there. There is no slouching back anymore, and for a while before I got my oxygen, there would be times when I would be so short winded especially when trying to reach my car, that I would have to sit down and almost arch my back in the car’s seat just to try to achieve that same angle so that I might catch my breath, since leaning forward on my knees is impossible in the car.. It would remind me of the folks that have to live in a chair and have a rod in their back to keep their spines straight and not allow the natural scoliosis curving that takes place when they are in a chair 24/7. I felt like I had a rod in my back just so I could catch my breath. Not anymore though, not since I got my O2.

Things happen to a body that continually goes through these motions. One has to have bladder protection, because when you cannot breathe and get to the point where it feels you will pass out if you keep on going….guess what also happens?

And if you are just trying to get the groceries from the car into the house… well things can happen.

For me, I can always get there, but it is like a surge that comes over me after-the-fact. I can make it to my front door arms laden, with multiple grocery bags, but after I get inside the house and set things down on my counter, that is when my body then catches up with me, because I have been operating on borrowed time, on auto pilot. Pushing the limits of my body just to function as I should normally operate, I must lean on the counter and immediately do Kegel exercises. Sometimes is works and sometimes it doesn’t. At times, I have been known to make it into the house and then into the bathroom before the surge sets in. I can be on the john when the surge hits, and by surge I do not mean what you think I am referring to.

The “surge” is my body reacting to a loss of oxygen, in that even though I am in a sitting position, my body thinks I am still pushing the envelope, and the inner speak starts up as though I have reached the end of my rope, and am dangling there ready to drop off. But because I lived through the 60’s and the 70’s and survived various forms of paranoia, these surges that rack me when I am in the bathroom in the darkness, do not allow me to panic as they might some one else. I can get air, I feel the air moving in and out, but I cannot relieve my own pain. I must wait for my body to do it for me. Of course, I have always survived. Each time, as long as I relax and wait, my bearings return and then I can go out and put my groceries away. When I mention being in the dark, it is because I am …in the dark, with just a crack of light coming from under the door.

When I am experiencing this, the very last thing on my mind is the light switch and because it is an internal bathroom there is not light unless the switch is flipped when I enter the room. And so far, I have never flipped it when I am in this condition. And this tells me just how dire my situation seems when I am surging like this. It’s freakin’ sad.

But I do survive.

In fact if I am in public I will refuse to do something that I know will cause this surge, something like a long flight of stairs, or to walk up a hill for example. To this day, I have never passed out. Never. And if I did pass out, I am pretty sure that I would just start breathing on my own because that is my nature, I stop moving and my O2 stats immediately start to rise back up.

I have never seen stars and I have never seen my fingernails or lips blue either, so I know I am not blacking out as another person might do, and as I might do had I complete loss of oxygen and turn blue. So far, I have never needed hospitalization from an illness. Many of my friends cannot say this.

So I go on day after day, sometimes swinging from the end of my rope.

But I do know one thing. I cannot converse when I am like this, I cannot discuss, nor communicate other than by looking into eyes and maybe a head shake. I have likened it to labor pains when one is in transition. When I am like this I am in the throes of a huge bodily labor pain that sweeps my attention to the innerspeak within and as it wanes I can feel my abilities coming back. Just like a labor pain. It’s all an event of natural timing.

Freakin’ sad.

Nautilus

I am a nautilus. I am rolled into a ball, a coil with ever tightening concentric circles that get smaller and smaller, each chamber smaller than the preceding chamber all the way to my core.

My id lies in my internal structure. Inside my shell, in the place where I am found, tightened within my own private little world I can seek my own pleasure from the inside out without having to expose myself to the outside world that wants to rob me of my strength.

And when I am forced into the environment, when I need to go out, I can just grow another shell of protection, compartmentalizing a new place for myself to step into; a new booth from which to view the outside world. In this booth, I sit and watch others as they go about their daily lives laughing and frolicking, never the wiser that I am behind my partition watching them. I crave to be out there playing. There will come a time when I will be freed, my shell will be removed and I will burst forth, out into the sunshine again, where I might breathe the same air that everyone else breathes. I won’t feel any more pain.

But for now I stay curled up within my world, my only visit to the outside world comes from the need of sustenance and to tone myself to retain my inner strength. Until my time comes I can only dream of the outside world and access my memories of days once lived in the sunshine experiencing the freedom of movement. I can go out, but it is only for a brief time, and then I must return to my safety zone.

I crave the top of a hill, the sweet scent of the breeze that carries a snowflake in the icy air. I crave the ocean, the scent of the sand and the salt water, the spray that whips my hair against my cheeks.

As a nautilus I am safe within. As a nautilus I can remain curled up, restoring some sense of who I was, with thoughts of returning to the sea, all in my own time.

sunrisebird ~vaka haunui~ Duncan Morrison

For now, when I venture out, my existence is captivated by my thoughts and frets about making it back into my shell in time to find my peace, my air, and my place to dream. Yet my dreams are of venturing out finding my peace again and then dreaming while I am out there.

All in due time.

Time Warping

Tuesday, Feb. 7, 2012

Next Thursday the 16th of February, will be my final local test. As soon as I am done with that test I will be calling Seattle and we will be making the "all day appointment" at the University of Washington Medical Center. It will be an all day affair with another full series of Pulmonary Function Tests, another Stress Test, and any other tests they can find; including a nicotine test in case I still smoke and haven't mentioned it to them yet (ahem, not). After the tests are completed I will be meeting the surgeons and then I'll have my pre-op appointment. So perhaps we'll be driving home with a surgery date, too!

Here is comes. I am glad that I still have a week before the final test here because I want to prepare for it with more time on the recumbent exercise bike. I was told that for the surgery, I really need to focus on bicycling and arm and core building exercises... I say, what's left? Eyelid exercises?

Oh, and of course, the local test here is going to be a stress test, one of my most dreaded tests. No food, no caffeine, no nothing for 12 hr, only little sips of water allowed.

Sorry for the lack of levity tonight. I am pretty tired... waiting, waiting, waiting.

I know that tomorrow will be better. I will be spending 1/2 of my day at the hospital: working out for an hour, followed by an hour of chair yoga, lunch at the hospital cafe (which I hear is fantastic), and then after lunch it's the Better Breather's monthly club meeting for a couple of hours. So I will probably be a bit tired after all of this; but I am looking forward to it.

Slowly but surely I am getting there. It's funny when I look back. For so long I have been wanting to get this over with, now that I am actually looking at it happening, part of me wants time to slow down.

No Room For Wrenches

Feb 1st, 2012

Tools are good for keeping things maintained. Every tool has a place to be. Wrenches are usually numerous, and there are many types.

Each type has a use.

This is not about the wrenches we use to tighten things or to loosen things. These are a different type of wrench.

And do not mistake the term wrench to mean “to wrench something from one’s grasp” though at times this terminology can come inevitably close to what I am referring to here.

I am referring specifically to a type of wrench that has no use.

The throwing wrench.

The throwing wrench has no purpose but to be thrown. It has no nut to hold, no bolt to fit. It isn’t used for anything. It has no adjustor wheel on it. Ironic that for having no use in a tool box, nothing to fit onto, it probably has the widest latitude range of any of the wrenches.

Yes, the throwing wrench.

A throwing wrench can be of any size, too. It can be so teeny tiny that no one can even see it, or it can be so large that no one can ignore it. A throwing wrench at times can also be related to its cousin the proverbial fly-in-the-ointment.

But one thing is for sure, one cannot get by without feeling it or its ripple effect as a bystander, once a wrench has been thrown. For what goes up always comes down.

And let it be known to all, everyone gets a wrench thrown their direction every once in a while. If you say you haven’t ever felt that wrench, you lie…like a rug, or you actually are one that believes that denial is a river in Africa; or you are just plain oblivious.

Sometimes denial and obliviosity ride side by side. Ignorance is bliss, but not obliviousness or denial. They’re just plain ol’ things that some people can’t admit to. But even to deny a wrench being thrown constitutes that wrenches in fact, do exist, and the denier probably just got hit by one, which rendered the denier to be just as plain as everyone else. So much for those rivers in Africa. You might as well have said that you have a special wrench than to say you’ve never experienced a wrench at all. At least more people will believe that you know what you are talking about.

I’d like to say that I won’t be getting hit by any wrenches in the next several months, but that’s not likely to happen. There are never any free rides. We pay for what we get and we get what we pay for. I’d like to think that my next several months will breeze past me with no fouls called, no bumps in the road, no air turbulence and especially no wrenches hitting me in the head if at all possible. At least let me have my way when I call them little teeny tiny wrenches. We don’t have to worry about my denial, mainly because I know they exist. I will try not to become exasperated when my loved ones see those wrenches as huge Open-end adjustable Plumbers wrenches, if they do appear to be that way to them. Let me see them as being small.

So here’s my first wrench:

I got my “Call of My Life” last week. I was told that we would be proceeding right along now, and that I needed to have one more cardiac test, and that the case manager would be (both) faxing and writing up an order for this one last test to be done locally (a catheterization or something like that). Of course, in my mind what I see is a scene from the movie The “Exorcist” when Regan is in the hospital and the heart test is being run on her, the needle jabs into her heart and she freaks, ripping the catheter out and then the bleeding starts, blood squirting everywhere, Regan flailing on the gurney….. this whole scene broadcasts through my mind in an instant flash. Of course, I know that’s not the same test I will have, but my mind still goes there, because that’s the imagination I was born with. So be it. I talk myself down again.

So I was told that I would be getting the call to come in within a day or so…….that was 8 days ago, and today we checked from our end, going backwards. No one has been told anything, no one seems to know anything, even though the case manager said she was going to write it up as soon as we were off the phone a week ago, Tuesday. When we ask about it at the Cardiac unit, we are looked at with blank eyes. I could have been a vase of flowers and received a better reaction. Don’t get me wrong, no one was upset, not even me. Everything was just blank.

It’s OK really, because once that test is done, the future becomes inevitable. They say I can still back out of surgery if I want. What?

I won’t be doing that because where have I got to go? Downhill? But that doesn’t stop the fright from invading my senses. I can avoid thinking about everything until the phone rings again. I am not immobilized either; today, after I came home from the gym, after we had checked the status of this test that never materialized, I did call up to Washington to let the case manager know. She’ll probably immediately send another order, and call me back, too. So I am not putting my head in the sand, not at all. I just have the liberty of having my head turned the other direction until I hear more, because the case manager’s voicemail says that she will always return calls by the end if the following day. So I have one more day of not thinking about it. I have the liberty of enjoying this teeny tiny wrench for at least 24 hrs.

ummm Baba ghanouj and Samboucik

I’ll make a good time of it. I think I’ll embrace this little wrench and have sambousek complete with accoutrement for lunch tomorrow in celebration of my 24 hr reprieve from the future.

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!