♦Time, before and after.

♦ How I will make the most of it ♦ And how it will make the most of me.♦


Welcome.

The best way to read this blog is from beginning to end

Please use the sidebar's archive index which has been created showing the original post first

with each post successive afterward.

First Post is "Time" January 11th, 2012

SOB = short of breath


Tuesday, July 3, 2012

96 Days after LVRS

Hello, I am posting today because I want you to know that I am doing very well.  In fact, I am doing so well, that I run out of time each day, and this blog is generally the last thing that comes to mind. I am busy running errands, working out, and basically doing all the daily things I used to do, only much, much faster, and without losing my breath.  One of my next posts will be about the things I have noticed and enjoyed once again, now that I have regained so much of my past life.

After surgery, I slowly started back at my past life of jewelry making and happily the custom orders started coming in. I am now back where I was prior to surgery (with my jewelry). I have approximately 4 custom orders waiting in the wings and I am about to start gathering the parts for my next one now.

Flame Dancer

I just finished two custom jobs and got them both shipped in one week. Both recipients are very happy. I really get great feelings of accomplishment each time I finish a piece, especially now, considering all that I have gone through.

all that glitters is not gold

As far as my surgery, now 3 month past, I am doing very well, and I continue to go to the Pulmonary and Cardiovascular gym to work out 2x per week, and I plan to continue this for the future. Yes, the future, no end time. It keeps me healthier, especially when one considers that jewelry is done pretty much in a sitting position. So for me, my workouts are now a part of life, and that's OK because without them I may not have much of a life at all, had I not gone to Pulmonary Rehab & LVRS.  I dare say my quality of life would be very poor.

I rarely use any oxygen at home now, though I do use it when I work out mainly to feed my brain the good oxygenated blood, a very important thing, however I do turn it off during chair yoga, unless I feel the need to use it, which is rare.  Chair yoga has been one of the surprises and awareness giving tools for me. I have learned some breathing exercises for lung capacity, that when used one can visibly watch the O2 saturation rise during the techniques!

~*~*~*~

Ummm.... Cake! Presents!

So my plans today, I went shopping for some birthday presents, that I will now wrap, and then I'll bake a cake. Tomorrow, the birthday will happen, complete with our daughter's chosen birthday meal of BBQ'd hot dogs, which we will spiral cut as a surprise to her. She'll have a mound of presents to open, chocolate cake with white icing (another item of her choice), and then it is outside for fireworks!

Cheers! More Cheers!

Fireworks are a biggie for me, because in the past several years, while I like fireworks I could not stand to sit outside and endure the smoke. The lung pain of not breathing well did not bode well with me (I did not go on oxygen until last August, so I was still dragging my sorry butt everywhere, in pain and gasping for breath at the same time). It is hard to maintain any semblance of a normal lifestyle when one cannot breathe; everything changes. So this year is a real celebration! I will of course take heed of any smoke since I do not want to repeat the damaging effects on my lungs. Now you know why I have been so remiss on this blog.... I am free! I am mobile! And I run out of time each day! Ok, the eggs are now at room temperature so it is time to make cake! As we say in chair yoga each week: Ohmmmmm...... Namaste.

ArtFire & Etsy
My Magiccarpet

Saturday, April 7, 2012

Day One 2012 - Mar 27th

I will get into this later, but since I am now just in the process of beginning my next post (complete with my own style of Art work); I decided to stop and interject this little post into the mix.

If one were to go back and read one of my very first posts (from Jan 7th, originally written on 10/7/11 on my CarePage then moved here to this blog), what you would read were these words:

"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."

So true, only I never had any KoolAid as a knock out drug. They lightly doped me up in pre-op when they took my clothes away from me and gave me the most unbelievable hospital underwear that appear to be crocheted from a single stretchable thread, for those women like me that are a bit modest because we are 'sneeze-pee-ers' (unfortunately, they disappeared during surgery), but know that they have no front or back or size for that matter, the weave just separates as one pulls them on!

The weave is not this evenly spaced, nor is it as "pretty."  It's actually more like the above image.



Anyway, when I post about the actual surgery I will get into the happenings, but let me tell you, that I did eat dinner that evening, and dinner consisted of what I have now named Five Day Chicken Noodle soup, coffee and J-E-L-L-O !!! Yes!!!! Strawberry jello; brand, too, with a little foil pull top!
I predicted that Jello was what I'd eat and I did, and all was well for me. Oh, and I had my coffee, too!

It was a Kismet moment for me, because the Jello had hit the spot. I think I ordered Jello or custard each and every meal, however, what I found out was that only the very first Jello was the Jello brand, with the little pull top, the rest of my jello's were all made in the kitchen and served in little fluted cups. And sadly I have to admit, that every single one tasted exactly the same as though they make a big vat of jello and then color it with different shades to appear to be different flavors.
Oh well, I ordered them anyway. But the first one that brought me back to Earth and told me that I was home again, was my Jello Brand Strawberry Jello cup!

Monday, March 26, 2012

Eating My Way Through Seattle - The Night Before Day One

photo by Natalia Tsouklava.



This ship is now leaving the port.

As I approach tomorrow I have to look back at where this all started, back in July, when we first heard about LVRS surgery. At that time we actually thought that LVRS would be occurring shortly after we were told about it. Then we found out that I would need to be Graduate from Pulmonary Rehabilitation. After I graduated from rehab, we thought we’d be hearing from the surgeons rather quickly, but things work the way things work, and the ball didn’t get rolling until February. I actually think this is better because we didn’t have to worry about any inclement weather like freak snowstorms (like that one last week, for example).

But here we are, and tomorrow I roll into surgery ready or not, no turning back now. I have showered with the specialized surgical soap that the nurse gave me, so surgery is ON.

We spent the day at the hospital having blood draws, pre-op appointments, including that soap mentioned above, to shower with tonight and again in the morning prior to coming in. I also had another series of CTscans this morning. Tomorrow check-in is at 8:15 and they will be shooting me in the spine with an epidural for pain management, which I will be using for a while after surgery. I probably won’t be doing too much tomorrow other than groaning and getting pushed, prodded, gauged, metered, and "temped." But tomorrow is "Day One!!!!" Yay!!!!

The hospital will remember us, as the ones that will stink up the whole ward with Indian food! They all know that we plan to be having it for dinner (hubby will be bringing it in as soon as I feel up to it!).


It's a good thing they serve Indian curry in the hospital cafe, so they shouldn't be too surprised to have the scent up in the ward at times.

We spent last night and tonight eating at a great Italian sub sandwich shop called Sarducci’s that also serves crepes, a discovery we made in the university district.

They even bake their own bread daily and all of their sandwiches are made from it. Last night I had an oven heated Italian Sub and hubby had a meatball sandwich. It was heaven on wheels for both of us, especially since our favorite Italian sub shop went out of business at home.

Today at the hospital we were told that I should eat a dinner of good protein tonight, and then of course, no food after 11:00 pm tonight.

So rather than eat extremely spicy food from an Indian restaurant, we decided to go back to Sarducci’s again and try different sandwiches, saving the Indian food for after the surgery. This way, we could also get some of those great looking homemade crepes for dessert.

That was the ticket! Hubs had a Hot Pastrami sandwich and I had a French Dip; and from him, all I heard were a couple of mm- mm’s and a growl when I got too close. My beef dip was very good, but I think I preferred the Hot Italian sub I chose last night better.

Our dessert crepes both have strawberries, his with ice cream and mine with whipping cream, both have chocolate syrup dribbled all over and mine also has sliced almonds. (I also got a growl when I got too close to his crepe, so I kept my distance and watched him chow down on what looked to be a delectable dessert).

Now, it is about 8:30pm, and I am going to finish this post and start thawing my crepe (we brought them back and immediately froze them to keep them from getting too soggy) and then I am going to welcome in “Day One 2012 with style and strawberries, almonds, chocolate, and whipped cream on a crepe, and tomorrow life for me begins again.

By lunchtime tomorrow I should, be done, and all hosed up, learning how to breathe again, ready to kick up my heels once more!

Friday, March 23, 2012

Mental Notes



I am now making mental notes to myself as the timer clicks downward, second by second, toward Day One. It is now Friday, March 23rd, 2012, and day one is 3 days and about 6 hrs away. And that means in 4 days I will be awake and eating jello! And, I'll be on morphine, too. Oh Boy!


So I am watching time dissolve before my eyes, thinking about all the things I need to get done, and all the things I still need to do. Then I have to figure out what I will take with me to Seattle. In my mind I picture a Hollywood Diva, my hubby coming into the room and saying “Are you ready? Where are your bags?” and then me, the Diva, casually thumbing over my shoulder to my baggage, as I click my way down the hall on my stilettos, pulling my pashmina up over my shoulders as I go. Hubby looks behind me and what does he see? 2 steamer trunks, 14 little suitcases, 2 overnight bags, and 2 overstuffed tote bags; one of which carries a loaf of bread; a baguette, leaning up against a couple of fashion magazines, and a big straw hat.

In reality, I’ll probably have a brown paper bag with handles stuffed with my robe, underwear, sweat pants, my book and my laptop, although I do reserve the right to put them into my black leather attaché case if they fit inside.

In the past week, I have hemmed and hawed, getting frustrated at times because I have wanted to prepare for this, and yet in many cases have been unable to do so because of timelines and deadlines that haven’t yet happened. Then a snowstorm got in the way of all of my personal plans and the week kind of went out the window. One thing that has pestered me completely is bill paying. I want nothing more than to have all of our bills paid before we leave, in the same fashion that I do for Holidays:

Once everything has been paid, then I get to sit back and relax and have fun. But if one single bill has not yet been paid, it will gnaw at me like a puncture wound does, or like a piece of fingernail skin that has been partially torn off leaving a little nub that cannot be reached by the teeth, resulting in pain every single time it is brushed up against.



I have no issue paying the bills, but today with online paying, some of the bills will not even allow access to an account until there is a bill to be paid. Is this a form of cruelty that some corporations use to drive anal retentive folks like me crazy? Is this an inane form of punishment for wanting to pay bills early? Is this the reverse side of the cruelty that they impose on those that pay late? Sometimes I think that they are just financial sadists, applying retribution to anyone who would dare to step outside their boundaries.

Ok, so I have every bill paid except for the two that refuse to allow a person to prepay. Both are utility bills. And then there’s the bill for “One” of our major credit cards who shall go nameless. Ahem. That “One” actually will accept any amount between their specified cut-off dates, no problem with that. At one time they were exposed for their game of shrinking transit times in regard to due dates vs. late fees thereby giving their patrons less than a week to pay their bills, once they are actually received in the mail (which brings them vast sums of late fee monies, from otherwise on time bill payers). Laws were made to stop that. They now accept any payment, but if a payer is ahead of their cut-off date, a new bill is still generated with the same amount due and with original due date anyway. So even if a person pays early; if it is even one hour before their computer cuts off the statement, they will still end up right where they were before they ever paid that bill early, and the result will be a double payment for the preceding month. And if the next payment goes one minute after their due date those huge late fees are then added to their balance and their account receives a “hash mark;” call it a an electronic whipping lash on their back for the punishment of stepping outside the lines drawn. So I am waiting for 3 dates to arrive in order to quell my brain and finally relax before surgery. One of the dates is the day before surgery, while we are in Seattle.

Now one of the things I am trying to avoid is using any passwords in a Wi-Fi area that is not my own (and self created) password protected zone. I would like to be surfing sites that do not used any specific passwords and things like that, when I am in the hotel room or at the hospital, because it never seems to fail that when my friends are out of town, that is when they get hacked. So I am not all that comfortable with the accessing of bank accounts and credit cards while I am away from home. Let’s just be safe rather than sorry afterward. I can change my Facebook password if necessary, and my shops passwords, even though the shops have now been put in vacation status. So what’s left My Pinterest account? LOL

My daughter’s schedule has now been changed so that she can go to her program for 5 days per week rather than her regular 3 days per week, and her bus schedule has been adapted to match her new program schedule. Her caregiver is coming over tomorrow to go over the things that are necessary to be maintained while we are gone, which means life with our daughter, and the cat (whom our daughter will tend as a ‘job’ by measuring kibble into her bowl twice daily).



I have an ongoing list here on the computer that I will not print until the last moment, since I keep remembering things that will need to be done. Each time I add sometime I silently vow to increase her pay, which should indicate just how wonderful I feel she is, for coming to live at our house while we are gone. I have a belief that one never scrimps on a caregiver or a server because a person wants them to want to come back again in the future.

So my list keeps getting one new thing added at a time. Almost everything added at this point are just reminders of where things are located in the house and the way certain things are handled, most of which are meant to appear seamless to our daughter’s daily groove.

Tomorrow, I will remove the mail box key from my key ring, for our caregiver, and place it next to the medical insurance card on the sink. An envelope of cash will be added to that, since one never knows what may come up while we’re gone. Luckily, we will be a cell phone call away when the things I have missed, come up. And that reminds me to add to my list: My cell phone recharger and my laptop’s wire harness.

Next up are my clothes. What to take? Do they have hospital gowns? I am assuming they will want access to both sides, and each end of me.


I haven’t forgotten my earlier image of walking out into the nursing area in my open-backed gown while towing my little wagon of tubes, wires, hanging bottles, and gauges at 4AM in search of espresso, or anything but decaf.

So I imagine I will not need any nightgown, which in my case happens to be my hubby’s giant T Shirts, with my socks hanging at my ankles. Do I take slippers? Hubby just told me yesterday that he bought me a pair of “softy socks” with rubber soles! Yay!!! I can walk on electric wires now! And I can also stop myself if I start to snow ski or ice skate on the super shiny and clean hospital floors when I am wandering around looking for caffeine fix... If they work well he’ll buy me another pair too! He always thinks of things like this, things I never would have remembered to get for myself. This is why we make such a great team together, we actually complete each other!

So I figure I will need actual clothing for only a short amount of time. Travel clothing up to Seattle, and for one day of testing, and clothing for the homebound trip. In addition to that I may need clothing for a dinner that first (or last) night in Seattle before the surgery. In other words a black turtleneck and jeans should cover everything I have just mentioned about driving up to Seattle and the time before surgery.

After I am released (if I am released early) we may stay until the 2 week period of hotel reservation is completed so I may need some clothing for that too, even if it is just pajamas. An extra “hubby t-shirt” and of course, all of the side clothing accoutrement; the socks and underwear will have to be packed. Bras will not be tolerated after surgery, and are barely tolerated now, so I will wear a sport bra, a stretched out, worn out and almost dissolved sport bra that I stole from my daughter, in order to remain supported and yet comfortable.

This is something that I have not gone into here before, but due to the emphysema and COPD, with the expansion of the lungs, the ribcage also expands (thank goodness) to support the enlarged lungs, so all of my Victoria’s Secret pretty bras have become somewhat of a moot point in the past year or so. All of my lacy and pretty “push-up&outs,” have now become the last thing on my mind, giving way to the comfort of older worn and stretched out cotton knit bras from way in the back of the drawer.

Then my hubby had another fantastic idea! Our daughter has her old and worn out sports bras that no longer carry much “sport” in them, and she is one size larger than me, so why not borrow some of her more worn out bras until after surgery? What a great idea! I found 3 of her rather holey and nicely stretched out sports bras and they fit perfectly, so I have finally achieved some relief and they have even afforded me a bit of cleavage! Of course, they will not even be tolerated after surgery.

When I leave the hospital from surgery, I will have either multiple suture lines on each side of my ribcage or one long and bright red suture line down the front, if it ends up necessary so the very last thing I’ll be wearing is a bra of any kind.

All of this bra talk reminds me that after surgery I will also be needing all of my shirts to be open-in-the-front shirts, my undershirts to be my hubbies cast down gray sleeveless tanks that are so loose fitting on me that I have to be careful where the armholes are laying at any given time. They should be perfect under the man-sized button down broadcloth shirts I plan to take on hangers. The hanger will insure that they stay somewhat wrinkle free, but of course, once I touch them, the wrinkle free status will completely disappear.


For some reason wrinkles and I go together like ham and cheese. Even wrinkle-free items wrinkle on me. Oh well. I don’t really think that will change after surgery. If I believed that, perhaps my early 30’s appearance will re-manifest too.

Well, other than that, I guess my personal products like toothbrush and paste and those things have to go too. Should I take hair products and a brush; or should I just let nature takes its course with my wrinkled clothing and all. That’ll look good! OK, I will take my brush, and some rubber bands, bobby pins, and perhaps some Bumble and bumble styling crème, since it makes hair look dirty and more malleable, which in my case means it takes the frizz down.


Head bands won’t cut it, making my hair look like it is on fire directly behind any band I attempt to use to control it. And with the new violet and magenta side panels I now wear on my right side, it might scare the nurses when my hair stands on end after sleeping in it for days on end. Oh yes, I must not forget my video cam and lots of batteries, too!

One of my friends who has had the unfortunate opportunity of numerous hospital stays has reminded me to take my own bath towel, since hospital towels are usually between the size of a washcloth and a gym towel and once in the shower, if the towel supply is a bit thin or cannot accommodate a person one must wait until the nurse appears after a person summons them to the shower for an extra towel. So if I am feeling a bit modest, I might heed her advice and take one of my own bath towels from home. That also stands for a blanket and pillow. The blanket can be a single-person blanket, one that makes a person feel good (I turn and look at my plushie blanket next to me on the sofacheck).

My friend also mentioned that the hospital pillows are usually hard and of course, plastic coated (probably for sleep droolers like me) so I might be happy if I have my own soft pillow, and she even mentioned that she prefers her neck pillow when she has to stay in the hospital. I am taking all of her advice and while I don’t usually have the need for a neck pillow unless I am in a jet, because I am a solid side sleeper, which is something I am told I probably will not be doing after surgery, I might be in good hands if I do listen to her and pack one of my bed pillows, my hubbies neck pillow and my favorite sofa blanket in the back of the car right before we leave.

I wonder if this might be a good time to open our Oregon State College Beaver Snuggie to take with us. I was told that while in Washington’s Husky territory, the only thing worse than a Beaver, is a Duck and worse that a Duck, is the pariah of all time, a Cougar.


So we’ll have to think this one out before we go. I figure that if we lose anything at all; let it be the Beaver Snuggie and not my favorite plushie sofa blanket.

So armed with my laptop and my “Girl Who Kicked The Hornet’s Nest" book, I am good to go if they have a remote control in the hospital and the TV isn’t all Hospital “How to” Breast feed your baby, dress your own bandages, and handling you IV ports.

This time we’ll take more snacks, like cheese slices that I will slice from my big block of super sharp cheddar, cuties, cookies, more water, and the almonds I didn’t get to munch on last time due to my swollen tooth, the inability to bite down and the pain that came with it all. Now that we know where we are going we can also stop for food on the way if we want something fast and nasty to eat, which of course, I always love to do when I am on the road.

So, in my angst of not being able to pay all of my bills before leaving for surgery, while waiting for my laundry to go through its processes, to pass time, I have taken it upon myself to open a bottle of Chili Beer and settle into the HBO Series called “The Game of Thrones” in Hi Def, no lessOne thing is sure, after watching Game of Thrones, nothing will scare me at the hospital now

Sunday, March 18, 2012

My Last Week

March 17th 2012

I got dinner out last night, and I brought it home to eat. I am now entering my last week and have made the decision to be home bound because I want nothing to come between my surgery and me. No germs, no interruptions. I am getting all the bills paid that I can, mainly because it is my job in our family and if someone else has to do it, you just know that I will be going back over it later, just to make sure it is done the way I like it done, because as messy as I can be, there are just some things that my anal retentiveness takes over me, at times.

Last night I colored my hair, one of my ways to be independent, even though I am not going anywhere. Like my life, it really doesn’t show, until it gets a bit ruffled and then the glory is borne.

under cover

And when that happens, the magenta and violet shades burst forth into a shocking array, flowing in vibrant colors which some may call ridiculous for a woman my age, but after all I am a licensed hairdresser, whether or not I am working and creating an income from my profession.

Ruffled & Blowing wind

It is my right and if confronted one will find that I am not easily subdued by patronizing or condescending remarks regarding how I should act my age. Who cares, anyway? If it makes another think or it causes angst to someone, rather than ask them why, and what they are missing in their life that would provoke them to seek outside of their own confines for answers to their own existence, I prefer my favorite response of “So?” to be sufficient.

I now enter my last week of non breath, as I call it, (in hopes that I will emerge from surgery a different person than what I am as I roll into the OR room on my gurney). My hubby has never known me to be a person of sound breath, as I was affected long before we met. He has never ridden a bike next to me, nor has he shared with me any sport or excitement that involves bodily movement that taxes the system. He has given of himself freely dissing all of his own sporting events just to be by my side, because in reality I have not been able to join in the world of activity. And in the last year or so I haven’t even been able to do the mundane things like going out to dinner in a relaxed state without my lack of breathing coming between us.

So, in hopes of rolling out of that ice cold room where they will have me hooked up to hoses, tubes, wires and videos and all of the equipment that they will need to fix my lungs, my surgeons will work their miracles on me, and perhaps rebirth me into the world of liveliness, once again.

After surgery, I hope that I never see that look in my daughter’s eyes again, when I cough, and that my husband can relax and not see me turn purple in his presence. Let it be only in my hair from then onward.

This coming week I will only go out to the hospital gym to work out, and perhaps top the Post Office to pick up mail. After that I will go out to fill the car with gas and that will be it. I guess there will be no excuse for the laundry not getting done.

I am not even going to the market and will rely on my freezer for sustenance. Fresh fruit and veggie items that I might need or dream up will be written on my shopping list for my hubby’s Costco and grocery store run, which is something that I usually enjoy doing with him, but not this coming week.

I guess I will have to find things to keep me busy when I am alone here at home.

Wednesday, March 14, 2012

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.

Monday, March 12, 2012

Facing The Music


They say if a person is slighted on one of their senses the other senses will be sharpened. I totally believe this as I have certainly seen evidence of this.
I once got in an argument with someone over something related to this.
He was a musician and he told me that it was of no use to play music to hearing impaired people because they could not hear the music anyway so it was a waste to play for them.
I immediately objected to this reminding him that hearing impaired does not necessarily mean that a person cannot hear anything at all and that many times it means that they cannot hear at the level that specialists consider to be a perfect condition and that there are many degrees of “hearing impaired.”

As a musician he should have known this since he considered himself to be a master of sound and also considered himself to be perfectly versed in music. We got in a heated argument over this because he felt that being labeled hearing impaired was more of an absolute thing. I finally just had to agree to disagree (which did not end the argument with him, because he needed to be right in his mind).
This was not just a matter of me believing, it was more of a “knowing” thing to me, and when I looked at him I could see bricks and mortar everywhere, in other words I was talking to a brick wall. So the question became this: Do I continue to try to keep pulling the bricks out as fast as they were being mortared into that wall, or just walk away, and consider it to be a lost cause?
I know for a fact that every disability has its degrees, and that sometimes even the ones that feel they are not disabled may indeed be disabled merely by thinking and believing in absolutes just like in this situation.
No matter how I tried to reason with this person, there was no reasoning and there was no logic that I could find possible to get through to him. I tried to show him that music could also be visual too, which just about caused him explode in front of me in his denial.
I showed him on his own drink sitting at the table while some music was playing. The surface of his mixed drink undulated with the sound waves of the percussion, and he explained it as table movement. He was a denier in and out, through and through. I think he was just angry at something, or someone, or perhaps something he had lost in this lifetime. And rather than accept his losses he fought himself, and in turn anyone else that might be tempted to step in to reason with him.
One of his own friends even had tinnitus, receiving his damage from playing in this gentleman’s band and after suffering from the impact of loud noises for years the result being ear drum damage. I know the impact of this, because I also have tinnitus, though I cannot say what caused it and it has never become an issue until I am in dead silence, or in very quiet surroundings. I realized this whenever I have lived out in the country, away from the city sounds at night when falling asleep. I have been bothered by changing patterns of a rumbling or a buzzing sound in my ears, sounds that are not present to others, just me. Luckily for me it has never altered my lifestyle and I know that if I want to escape the sounds of tinnitus, I just need to be around some gray noise to help cloud the sounds of the rumbling and buzzing.
I know of others that are hearing impaired that still hear beats, drums, and even some of the music. Some people are deafened to lower or upper ranges of sound too. I know that I have some hearing damage from working in a hair salon for so many years. I have always called it “blowdryer-itis.”

There are some tones I just do not hear. And drummer friends of mine almost always develop some form of hearing impairment after years of drumming, just like the form of tennis elbow, from their repetitive movement that they sometimes develop in their arms.
So why this ‘friend’ of mine could not understand that hearing impaired people could many times still hear was beyond my comprehension.
I am so happy that we never got into the sight impairment or intellectually challenged because he might have melted into a pool of genetic code right in front of me. He absolutely got along fabulously my daughter who just so happens to be intellectually and communicably challenged.
And speaking of being challenged in the senses, and the balancing of remaining senses to compensate, I will say this regarding my own daughter. If I could receive a $100 for every time the phone has been ringing and she correctly names the caller even before the name pops up on the TV screen’s caller ID (including her inability to read), I'd be rich!

If I could tell you how many times we have been discussing something in one room, closed off by at least 2 doors, and she bursts in to the room and says something in relation to our conversation, or just naming something we are talking about (many times it has something to do with a meal or food item), our gal proves that one sensory deprivation can, and is compensated for, by the sharpening and the acuity of other remaining sensory organs. In our house, we call it brain sucking.
All of this brings me back to where I am going with this post. I wonder if the inability in a sense can be compensated for within that same sense. Confused? Let me lay it out for you.
For many years I have played guitar, and a teeny bit of piano. It has always been enough to get by in order to write my own musical scores. My voice has suffered with this illness. I can no longer sing because it takes breath to sing. And not only does it take breath, a lot of the inhalers and medications affect the throat causing hoarseness.
I have always been told that my voice quality is hefty, or deep, guttural, which I happen to agree with, though I could sing not only in an alto range but I could also sing in a soprano voice too, and I have a very slim to none falsetto, whatever that means. I have though, always had perfect pitch, as does my daughter. She is even more “dead on,” in her pitch and was born with a natural knowledge of scales and ranges, lucky her, although she really cannot do much with it, because of her disability. But she loves to sing anyway.

My singing voice has become nonexistent in the past 5 years. For many years I played guitar and wrote my own music. Even when I had access to a piano, as in the old days, it was my nature to just sing out while I was playing.
Now, wouldn’t you know it, when I hear the music in my head, many times I can hear different sections of instruments such as percussion, and stringed and brass and such. But I haven’t had the desire to play my guitar because I can no longer sing. I haven’t done much songwriting because I haven’t been able to sing the tune. Even though it is all in my head I find it depressing if I try to whistle, and let’s face it, it’s not the same. Sometime’s the music in is my head but there’s no release…… My voice was my outlet for the feelings that arose in me while I played. Not anymore. So I express my art in other ways.
I am just curious to find whether I regain my voice after surgery. Like so many other parts of my life, will I have to rely on memories?


Travesty
It would be a Travesty,
If you know what I mean.
It would be unlawful for us,
Not to give it a try.
Seeing each other daily like this
Just letting the time slip by.
Don’t you see the Travesty?
By not getting together…

Whatever’s forever in time
Completely together.

It would be a travesty,
If the Sun went away;
But I would see you standing there
In its light, anyway.
The stars in the night’s sky are shining on you,
They’re sparkling as if to say….
Don’t make tonight a travesty
Just get it together

Whatever’s forever it time,
Complete it together.


Wednesday, March 7, 2012

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 8th 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 27th three weeks from now. Our choice was a cancellation date that had just occurred for this Friday, March 9th, which would be very handy but we were not ready for it this soon, or the March 27th date, and the third date was out around April 9th. 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.