The Day of "Tests"

My time for testing was fast approaching, my fears right alongside. I had heard some scary things about the testing and especially the bicycle stress test, and if you have read this blog you will know how I dislike things like this. We had arranged for our daughter’s best friend (and caregiver) to stay with her for the overnight and full day that we would be spending out of state. And away we went in the mid day. As we traveled northward we discussed the fact that it was kind of like when we were escaping for a getaway, just to two of us (something we rarely get to do). Unfortunately, when we do get a chance to get away there has been a reason similar to this getaway, or we just don’t get a window of opportunity large enough, and have to return home too quickly.

So we traveled northward for about 500 miles winding our way through Portland, Oregon’s traffic which was actually not as bad as it could be, but then it was Sunday after all. Even though the commute was nonexistent, there was still traffic, because in Portland, Oregon, there’s always traffic. I think they set it up that way to keep as many tax dollars in the state as possible, since many Portlandians have the tendency to move north of the Columbia River into the state of Washington to avoid the high real estate taxes that we have in this state, since there’s no sales tax.

As we left the state of Oregon behind us, magically the road lanes widened and straightened out, and the ruts and potholes disappeared almost completely and our gas mileage increased exponentially now that we didn’t have to drive as hard just to get around. And something else that was quite fun, was that the mph speed increased to 70, a fact I had not known about. So they’re doing something right in Washington that the State of Oregon hasn’t realized yet. Of course, Oregon does offer coffee at the State owned Highway Rest Areas. Too bad they are unaware that Washington has Seattle’s Best coffee everywhere, always tasting like it has been fresh ground. Imagine stopping to fill up the gas tank and buying a cup of coffee that could easily be Starbucks or rival them in quality. From a gas station on I-5 no less!

As we approached Seattle I marveled at the gorgeous city, and the tall beautiful buildings. The Sun just happened to burn through fog to shine on the metro district, and the gulls came out and sailed on thermals in and out between the sunlit high rises! A beautiful sight to see, I must say. Even though there were folks living underneath almost every single elevated freeway lane and overpass, the town actually shone bright.

We reached our convenience suite, easily found parking right in front and went upstairs (yes, I climbed 2 sets of stairs with 7 steps each, shock of all shocks), and soon opened the door to our conventional room. Even though it was not over fantastic, our room was very livable and functional with a large screen TV with cable programming, which was nice. Our view was of the parking garage next door, but it was Sunday so it as devoid of vehicles and peepers.

The only caveat we ran into was a toothache that developed in my mouth. It had started on the Friday prior to leaving; starting just as a gum that might have been scratched by an errant tortilla chip as it passed through, but once it didn’t heal and go away, it blossomed into a regular pain in the butt, and by the time we reached Seattle, I had a situation that I describe as a little raft floating on a pool of lava in my mouth.

I couldn’t bite down on anything much less my own jaw. And if you have ever experienced something like that, it is very agonizing and all thoughts of wandering around Seattle’s neighborhoods in search of a quaint little Thai or Indian café for our first and only night out on the town, prior to my day of hell testing, went right out the window. Instead, Danny went out alone and returned with subway sandwiches with mild and unobtrusive flavors, since I couldn’t enjoy anything anyway. So we laid on the bed and watched TV and fell asleep early.

Upon waking, we only had enough time to get our things together and arrive at the hospital around 8 in the morning. I wasn’t allowed to take my meds or drink my morning coffee, and if anything was to be eaten, it had to be light. So we just didn’t eat. Danny, did get his coffee after settling me into my wheel chair equipped with an air tank at the valet parking. It was when he was wheeling me into the hospital that he told me the story about the time he was wheeling his Dad in a wheel chair at the Dodger Stadium in LA and how he left him and went to get something, but didn’t put the brake on and his dad started rolling away! I laughed when he told me, but when he went to get his coffee I still double checked to see if he had set the brake……..

First stop, radiology! Danny parked my chair facing the wall and I said something like Hey, while I was hearing the guy chuckling next to us, and Danny said “you’re lucky we’re not at Dodger Stadium!” And that started us on a day of discussion about wheel chair protocol, since we had just alighted from the elevator where Danny had wheeled me directly in, which just so happened to leave me facing backward. It was then that I had a memory of seeing nurses pushing wheel chairs turn the chair around and pull it backwards into the elevator to keep the patient facing outward. This wheel chair protocol we aptly name “Wheel Chair Etiquette” from then on.

When they took me back to my VQ scan or Pulmonary Perfusion test they injected me with radioactive isotopes and put me in a scanner and CT scanner combination machine. They told me I was their first person to use the new camera set up. It was quite a magnaminous set up and I saw from the corner of my vision images similar to the lungs in the last post. This machine below is very similar to the one I was in, only I was on my back, and the boxy arms rotate around the patient taking images from different angles.

At one point they fired up the CT scanner and dipped me in and out a couple of times then the final series, a 360 degree set of images to compile into a 3D image while I lay there unmoving and those arms rotated and stopped every several degrees, shooting images through me. This all took about 70 min, or so, and right before I left they handed me a yellow card asking me to carry it with me for several days for legal and medical explanations, lest I set off any radiation alarms in my travels. Imagine ending up on a No Fly list because I caused the Geiger Counter tickers to tick!

From Radiology, it was off to the Pulmonary Diagnostic Dept for my “Full On” Pulmonary Function exams. First they drew my blood for an arterial blood gas test, and of course I have teeny tiny veins and a vein was pricked instead of the needed arterial line, so I had to be needled again. After that it was back to the dreaded glass box and many, many spirometry tests. I say many, many because they need three tests that are within a certain parameter of each other, and each time mine were so different that it was hard to get three alike. They allow up to 8 tests. And I finally achieved my three on the 8^th attempt. Of course that was only one test. If you have ever had a spirometry test, you would know how much they can be disliked especially if you have any breathing issues.

For a Spirometry test, you wear a nose clip and place your mouth around a tube-like funnel and when instructed, take several breaths naturally in a resting phase and then a deep breath and you blow like you have never blown before. And you do not stop blowing until you have every possible bit of air blown out, and then you keep on blowing even after that! In other words the tech sits there ready to catch you if you pass out (and he told me that people occasionally do pass out)… One would think I would have after 8 tests. But I didn’t. Then there were the other tests. For some, I breathed in a resting phases until instructed to very lightly puff in and out ever so lightly while holding my cheeks to ensure that I did not cheek puff and while puffing, and then they shut the air off completely! I would puff like that for a couple of seconds then the tech would instruct me to draw a deep breath and then softly blow out…every bit until I was ready to pass out again, in 3 matching tests, of course after about 5 we got 3. Then there were the tests that had me rest breathing, for several breaths then taking huge breaths in and then out, that’s right again out, out, out, almost pass out. Some tests blew air back into my lungs swelling them up. They also had a test where I was instructed to blow out and inhale, sucking and blowing as hard as I could, over and over and over and over again, with the tech coaching by doing it alongside me. I hope they have brown paper bags for some people after that test. If asked, I would name that test: The Hypervent test, because basically that's what almost happens.

Oh and by the way, every one of these tests are the color producing tests, and by that I mean they make your face change colors through every phase of the color wheel especially through the reds and purples and almost, but not quite blue. I would like to say that green is actually avoided, but yellow and green is what I feel when I think of those tests. Those bloody pulmonary function tests, now that I have completed all my tests, they were actually the worst for me, but I didn’t know that yet, since I was fearing the bicycle test the most.

I was approaching the day with my advance visionary technique, which means looking past what I was doing in order to see the light at the end of the tunnel in this case the end of the day’s testing. I had two more tests to do before that happened. We had a quick lunch break since all of those pulmonary function tests had pretty much dissolved our allotted lunch time.

~*~

The bike test was after lunch, and was initially my dreaded fear. Seeing that bike sitting there caused the blood to drain from my face. I was told that it would take about 30 min on the bike, and that after 8 minutes with no drag (and always keeping the bike at a speed of 65) they would then start to add the drag and I would be going as long as I could until another set amount of time passed. If I had to stop I would be informing them of whether I stopped because my legs gave out or my breath gave out, in other words, which ever happened first.

I never did tell the tech that I have never ridden any longer than 20 min on the recumbent bike at my gym on the lowest possible setting; the setting so low that when my timer is up, the 5 min of rest pedaling does not change at all. And here I was going to have to continue for 30 min on an ever increasing drag? Oh gee. And I would be in an upright position, not a recumbent position? I had visions of vomit, or falling over the handles while passing out. All of this with a full oxygen mask strapped around my head and 35% oxygen being pumped through me, including the pulse oximeter that was glued to my forehead in a head band set-up. I really dreaded this. And when it started there was no way out of it for me.

Actually this is where I have to admit that it really wasn’t as bad as I thought it would be. Partly it is because I was being pumped full of that 35% oxygen. When I work out at the gym, I am always at 3L/min of air (which is equivalent to about 28% or somewhere around there and lower than the 35%), and when I get short of breath (yes even at 3L) I get hot all over, and go through all the phases of SOB, many times feeling as though I am going to pass out, but I never do; so I endure it all, always watching my timer because my reward comes at the end of it all, when I get to rest. This test did take it all out on me but I was able to keep going far longer than I ever thought I would, and when my tech told me that he now had what he needed and that my time had passed and that I could stop when I was ready I did. I was hot and sweaty, short of breath, but not like I usually am in the gym and that is probably from that 35% Oxygen which I figure was continually reviving me as I was passing out! The tech said I did great!

And then I had one last test; another blood test. Piece of cake! We went into the blood draw area, they sucked a vile of blood and we were off to the surgical center for our consultation! We were done with testing!

At the Surgical center I filled out more paperwork and answered questions about my family history my medical history and things like that. We were taken into the exam room and asked more questions including questions about my toothache which I have pretty much ignored here, so far. But I tell you now, that toothache followed me all day long and interfered with everything in my functioning body, but I wasn’t about to let it get in the way of these tests since my life depended on them; and if I were sent home because of a toothache, I would die right there in Seattle. Of course, now in the exam room everyone seemed to want to know more especially when it was discovered that I had a 99.5 degree fever (which I did not notice at all), and my resting bp was too way high for me, even on my Bp meds that I take every day.

The nurse came in took my vitals and then in came the surgeon, the case manager, and even a pre-op specialist, all of which were quite concerned about my toothache which had emblazed itself into a swollen mass in my jaw. I promised to get it checked as soon as we returned home, even though it appeared to have reached its own threshold and might now be subsiding on its own.

Meet my surgeon! Dr Michael Mulligan

My Surgeon's Story! 

My surgeon is AWESOME!!!
THIS, is Dr McDreamy:
Published Jul 12, 2013, 9:00am  This blog updated:  July 31, 2016

What it’s like to
SAVE A LIFE WITH AN ORGAN TRANSPLANT

Michael Mulligan
Program Director for Lung Transplantation at University of Washington Medical Center
I was driving to work at UW Medical Center on 9/11 when I heard that a plane hit the first of the Twin Towers. An hour later, my team got an organ offer out of Alaska. At the time, we had one patient with cardiomyopathy who needed a heart and one with emphysema who needed new lungs. The FAA had grounded all civilian aircraft, so we figured we wouldn’t be able to retrieve the organs. But the medical director of the hospital came marching into our operating room and told me, “If you don’t fly up there to get the organs, the terrorists win.” We decided to go.
I asked my father, a former naval pilot, how best to navigate the restrictions. Then we flew up to Fairbanks, harvested the lungs and heart, and started back toward Seattle. We were almost home, flying over the Space Needle, when we suddenly veered back out toward the water and headed north. I tried to alert the pilot that we needed to land immediately, and then I looked out the window and saw two fighter jets off our wing. It turned out that our flight plan was not correctly registered with the FAA; we were identified as a civilian aircraft with no registered flight plan, flying at max velocity toward Seattle on 9/11. The jets had us targeted, and our pilots were on the wrong frequency.
They finally forced us down in Bellingham. The organs were in the cooler, and we were on the clock. The patients had already been prepared for surgery, and it was going to go very badly if we didn’t get to them fast. Both would have been at an acute risk of death.
We woke up a colonel on Whidbey, and he personally cleared an air corridor right down to Husky Stadium. They set up a helicopter and said, “We can take one person and the organs, that’s it.” So I jumped in with the helicopter pilot and we flew down and landed just outside the stadium. We were only allowed 60 seconds on the ground, so I quickly grabbed the coolers from the back of the helicopter, and sat down on the field as it took off with a torrent of wind. I took a few deep breaths, and then rushed to the hospital and transplanted the organs. The surgery was perfect, and both recipients did phenomenally. It was a matter of not relenting. Eyes on the prize.

****

I was told that I was in the best grouping of candidates, that my exercised state of life had placed me in the category that can get the very best results from the surgery! The surgeon explained different types of surgery and let me know that he expects to be able to go in from the sides with video assist and remove everything that he needs to, without cracking open my chest, splitting the sternum right down the midline. So healing should be significantly faster for me this way! And then we were given a choice of dates for surgery and we chose March 27^th three weeks from now. Our choice was a cancellation date that had just occurred for this Friday, March 9^th, which would be very handy but we were not ready for it this soon, or the March 27^th date, and the third date was out around April 9^th. So we did “good.” And we were done for the day and ready for the 5 hr drive homeward.

Good thing too, because the air was icy and Seattle was expecting a surprise snowstorm to blow in that night, so we beat feet to get out of town.

We made it southbound for about an hour and a half until stopping to gas up, get coffee, and to get me a cup full of ice for my toothache.

And I burned through every single ice cube wrapped in a towel all the way home, including when we stopped for our beloved Weinerschnitzel Chili dogs in Vancouver, Washington.

We even stopped in Albany and finally found my Brewery for Chili beer but it had already closed for the night, so we returned beerless after all of that.*

My tooth blazed all through that, and this morning after due consideration I called my dentist and they got me in early when someone else cancelled. One xray and the bad news came to me. The tooth is fractured and the root canal I had below it was highly infected. So in two days it comes out. The whole tooth gets removed and in several months, after surgery is over and done with, we will look at what my options for that missing tooth. Luckily it is my molar so it is not openly viewable to others. At that point I was immediately put on antibiotics.

Needless to say, I called Seattle and let them know and they quickly returned my call gathering all the pertinent information to collate into my file. Cool.

*I discovered that we do have the chili beer locally so tomorrow I will be picking up bottles to put into the frig so that after my course of antibiotics has been completed and when I am on the mend I can sit back and rejoice.

I have to give thanks to my Golden Heart friend (we’ve been calling him Robert) for getting me fired up on the exercise bike. His prodding got me to practice and with good reason too. I was able to keep on trucking on the bike right through the test and when I stopped it was not because my legs were tired, it was because my breath was short! And I think that’s what they wanted to know!

Now it is time to prepare for the big day.

Tomorrow, part 1 of The Journey begins!

We leave tomorrow for our trip to Seattle. We figure that if we leave around midday we should arrive in Seattle around dusk providing the highways are clear, unobstructed and accident free.

We are staying overnight in one of the University of Washington Medical Center's Hospitality Houses, which is a beautiful old looking brick building located adjacent to the Hospital Complex, so that is perfect.

They are extending us a great rate and Danny will probably be putting in for a room there when I go in, if it all works out well. That is a big relief me too. However, I will have to climb a flight of stairs because they had no room on the 1st floor available. Luckily, the woman told Danny that it is only 7 steps and then a riser, before the second set of 7 steps, so I can stop halfway to regain myself if necessary.

We have the room for one night, and early Monday morning about 7:30, we'll be leaving to go check me in for my testing.

My first test of the day: The Pulmonary Perfusion Test also known as the Ventilation Perfusion Scan or VQ Scan, where radioactive isotopes are injected into my my veins or I will inhale them into my lungs and then images will be scanned of them.

After the Lung Perfusion test, I am off to the next one, the "full-on" pulmonary function test, in the glass booth, ugh, where they'll seal me in glass, pinch off my nostrils while having a mouthpiece in my mouth and start by having me blow my guts out, suck air in, blow some more, then do things like cut my air off completely while I am sucking air in, blast air directly into my lungs to completely fill them (a very weird thing to feel when you consider that we do not inhale completely filling our lungs when we normally breathe without any disease present). These tests usually cause my skin color to change and flush through the whole warm scale of the color palette almost completely over the threshold not stopping the purple range until it just meets blue.

I have never met a person that enjoys these tests. They hurt soul deep.

But recovery is speedy and complete, especially once O2 is applied, and that test takes only about an hour or so, and it will include a test for arterial blood gas. Sheesh...

~*~*~*~

After that, we get a lunch break but I have been advised not to eat too much because after lunch, I am off to the Exercise Bike Stress Test directly after eating.

This is the one test of which I am the most leery. I do not like to induce movement-related shortness of breath, and every bit of my subconscious being screams out to naturally avoid this, or I will succumb. I won't of course; and even if I did, I am in the right place to be succumbing, they can slap me onto a gurney and plug me into whatever they plug people into to revive them.

I have recently received some information regarding this test thanks to another friend, Karen who will be going through her lung perfusion test on Monday, only she'll be in Alpena, MI. She is also a hairdresser with a very, very similar situation as me, and she is also a likely candidate for LVRS. They do their screening a little differently, but the end result seems to be the same: Surgery, at one of the great University Centers positioned across the country for people like us. These Centers are specifically set up for Transplants and things like LVRS and related surgeries. Bless them!

OK, After the exercise bike test, it is off to a blood draw (pre-op?) and they will do the nicotine test.

Finally, at 2:30pm, we will meet with the surgeon and team and consult with them and the other people present, case mgr etc. I am hoping that this is where we will learn about the date of surgery.

After that, we get in the car and head directly for Weinerschnitzel, I-5 and our southerly route home.

Don't forget, I will be watching for the Albany off ramp, and the Calapooia Brewing Co. (Danny has the Mapquest already completed), and the empty "deposit" bottles will be in the car ready to exchange.

I can already envision myself in the front seat of the car, excitedly pointing the way, a chilidog half-hanging out of my mouth, Danny rolling his eyes back into his head and ready by then, to pinch my oxygen line shut, when I start saying something like "oh, you're missing the turnoff!"

Yup, I am definitely reward driven.

Until later, then....
Wish me luck on that darned bicycle test, so that I will fall right into the center of their required results needed.

Oh yes, one more thing, did I mention that I am not allowed to take any of my COPD and lung meds before I start my testing, so I am going at it a la naturelle.

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.