Christmas Fun

Maybe this will ensure that her hockey stick always has fresh tape!

Gran looking most intently.

I think it is safe to say, Aurora had a wicked good Christmas!

We celebrated our holidays this year with Nancy's parents in Corning. Somewhere between the most sinful melange of bread pudding and french toast (yes, this was one dish!)... and the turkey that appeared mid-afternoon, we were joined by the Abbey family. This brought the fun level right over the top. What a splendid way to spend Christmas.

Glenn Abbey had a chance to sit a spell and visit.

Erik Abbey looking mighty happy to be home (and not on an airplane) for a bit

Mrs. Abbey joining us for a round of cookies before we started in on the bird.

Dennis (and his camera) made the rounds too!

Happy Holidays to All

Last Firing Before the Holidays

Today Hannah and I unloaded the last glaze firing for this year. It was loaded with the last of the orders from summer and fall. There is something so wonderful about knowing that the orders that have been waiting are finally done. The best part is that tomorrow I can start boxing things up to ship after the holidays.

This firing was for the first time, filled more with Hannah's work than with mine. As we unloaded and cleaned pots, it was really fun to see all the new ideas that Hannah has been pursuing for the past few months while I have been incapacitated. She has put a ton of effort into keeping the shelves stocked with mugs, sorbet bowls and plates. Her teapots and her butter dishes stole the show. The decoration is finally starting to meld with the form and the overall effect is awesome.

Holiday Party at Mary Ellen's

We don't do a lot of holiday partying in our family. Most years we just spend the major days with Nancy's family in Corning, then come home and relax. This year is different. There is so much more to celebrate. Mary Ellen and her family were there for me, Nancy and Aurora through the roughest spot in life anyone could go through. Her friends became our family. The day after Thanksgiving we all got together for a leftover feast. This past weekend, we all gathered for a pre-holiday gnosh. It was so wonderful to see everyone healthy, upright and happy. Certainly made my holidays much more festive!

More filters, more fun

Just playing with more filtered light this morning. Aurora was home sick, which means she cant run away from the camera as fast.

By The Light of The Night

Night falls and with it, energy sags. In this waning miasma Nancy and I find ourselves most every night. I have always wanted to capture the sensation of that glow coming off the computer and how it feels like your energy is being drawn from you bodily. Nancy was a willing accomplice tonight,... for her it was window shopping for shoes. For me, it was getting a chance to play with gelling lights. Too much fun for us both.

Certainly better than what we were doing an hour earlier.... wound care.

Yesterday I went back into the hospital to have those wonderful sutures (otherwise known as shark trolling line) removed from my abdominal wall. Mind you, these were buried about two inches INSIDE me. So yeah, they dug down, through blistered, abscessing wounds, found the blue plastic suture material, and pulled three feet of continuous line out of my body.

That was the good news. Tonight we found out that our local hospital can't bandage worth a damn. They used dry gauze which in a deep wound acts like velcro to fresh tissue. Hurts like a sum-bitch when time comes to yank it out. Seeing as how we have to do this daily, it is infinitely easier and healthier to have moistened gauze. Saline is your friend. These idiots basically made me blow through four massive clots tonight. NOT fun.

Now, an hour later, I can finally relax a bit. Nancy has cleaned me up, repacked my wounds, and bandaged me back up in such a way so that tomorrow night we wont be pulling out chunks of my furriness as we change dressings again. I like my fuzziness best when it stays on the skin-side of the bandage and tape!

Writing from bed

I am thinking about getting ready for bed, now that Nancy has re-bandaged my stomach. The hospital folks did their usual lame assed job. But the good part is that despite the surgical procedure, I am in good spirits and tomorrows I will be able to go out and walk to my heart's content. That will make my day much more fun. Might even be able to get in some light PT. For now, it is bedtime.

Going Back In

This morning I head back to the hospital. Yeah, another procedure is required. Apparently my body is rejecting the intra-abdominal stitches. I have had these nasty blisters running down my mid-line incision since being in the ICU. I assumed they would heal pretty quick. It has been over 12 weeks since the surgery, so we should have beautifully healed over skin... but I don't. Last week, these blisters decided to give me a little surprise. Every other night, I would wake up in the middle of the night, feeling something cold and wet all around my torso and arms. I guess the blisters were tired of playing nice. Blood and puss everywhere. Yuck. Ruined my sleep and did a number on the sheets to boot.

I finally saw the surgeon a week ago, and he was very cool about things. Said he would open one of them up and just remove the sutures. After jabbing me with lidocaine over a dozen times, he started rooting around. Forty minutes later, he gave up. Said he needed better light, different tools and I needed better drugs. So we rescheduled for today. In the hospital. Fun eh?

So why begin this blog posting with a picture of Aurora? Because I woke up early today to see her off. She leaves for the bus to school really early. I needed a chance to make sure she knew I loved her. She is still wicked upset and worried. Having seen me with dozens of tubes coming out of every natural orifice (and many new orifices too) in the ICU, she was scared this would be more of the same. No one who saw me then wants me back in the hospital. But, I have to go. It's time to get these sutures out so I can finish healing these open wounds.

Once I can safely say the wounds are filled in and healed, I can get cranking on rebuilding my abdominal muscles. After that, I can start throwing pots again... I hope.

Watching Saturday Race By

Here we are, staring at the last hours of Saturday whooshing past us. Nancy is wicked sick with a sinus infection (the same one I am starting to recover from)... but unable to sleep because her head is so congested. Instead, we stare into our respective computer screens, pounding away missives to an audience that hopefully is in better health.

This evening we watched Julie and Julia. I guess based on my love for food, blogging and the previews and cast, I thought this would be an awesome movie. It wasn't. I love watching Amy Adams, but her character was a nut. Streep will always be one of the best actresses to grace the screen... but as Child, she was too good. She genuinely made it hard to watch. There is a reason no one watches two hours of Julia Child cooking... you'd go bonkers having to listen to that voice. The best scene in the movie was the video of Dan Akroyd imitating Julia Child. That was funny. Overall, it lacked any major interest. The cinematography was pretty lame. Considering that most food bloggers acknowledge that good food deserves great images, this film was anything but sensual when it came to the food. Instead I was left feeling like I had watched two narcissistic women on the verge of a nervous breakdown. I wasn't the least bit hungry.

Compare that to Chocolat with Juliette Binoche and Johnny Depp... now THAT was a film that a foodie can get into. The sensuality, the colors, the textures and how it all echoed the human condition. That was compelling! Sorry Julia/Julie. In the end, they both may have mastered French cooking, but they never learned about food.

Coma Dreams #1

Yeah, I know. Not everyone wants to know what it was like while I was in the coma.... so if you don't, now's the perfect time to hit your browser's back button.

Today as I was felled by this nasty head cold, something hit me from out of the blue. Not sure what triggered it. Within seconds though, I was reliving an odd aspect of one of my coma dreams.

As I was prepping for the first "swallow" test, they feed you applesauce mixed with a seriously blue food dye. Apparently the dye shows up as a leak if you are unable to swallow properly. Considering I had been ventilated for over a month and still had a trach-tube in... swallowing was rough.

The setting: I am sitting in my recliner, waiting for the speech pathologist to administer the test. Meanwhile: All around me I can hear voices, but something is amiss. The voices slowly become more sharp and distinct. I am definitely not hearing English. Not sure yet what though.

A nurse aid comes into the room and says something I can't quite make out. Then proceeds to tell me that I should expect some changes in hospital staffing. Then goes back to speaking Slavic.

Bewildered, I look around the room, obviously unable to get up or really move around. As I survey the equipment, all of the instructions are either in Spanish or in Russian. What on earth? So I asked the nuse aid: her response was that it was simply cheaper to provide care this way.

With the first couple gulps of the swallow test down, I knew I had to urinate. A lot. I was sure that it was all going to come out blue and leak everywhere. Mind you, I was actually sporting a catheter at the time, and was semi-conscious. Not enough though. Weird stuff happens on all the drugs they had me on.

I probed further. She replied that now that the hospital was incorperating with multinational corporations, they had to maximize profitability and the easiest way to do that was to start with folks who would work for less. She explained that she and her family lived near the hospital. For some of my care, she would be bringing me to her home. Apparently her mother was an RN and was moonlighting as well.

Moonlighting or bootlegging depending on how you look at it. What they would do is when a patient could be moved out of the ICU they would take them home instead of the post-operative care unit. There, family members would administer to the patient's needs. In addition, they would collect unused medical supplies that would otherwise be thrown away at the end of the shift. They repackaged them and sold them on the black market to folks who couldn't afford proper medical care.

So as I lived with this family, my mother and I got to know them pretty well. Apparently the husband of the family had injured his back severely in a firefighting accident. All of the kids were nearly finished with school and two of them were planning to work for the hospital. They all worked as "outreach" for the community. They provided care, medical supplies and serious help to folks who would never otherwise be able to afford a hospital stay.

The dream ends with me laying on the dinner table having their youngest sons who were still in high school, drawing blood for a workup. They kept telling me we needed to hurry because it was almost dinner time and they needed to set the table. But I shouldn't rush, because that would skew the results. Their care was impeccable. They were skilled and compassionate. It sort of made me wonder what it would be like to live in a world like this. I am sure this is common place in other parts of the world.

How to know you're HOT

It has been four weeks since I left the hospital. During my six week stay in the ICU, I ran pretty constant fevers. You know you're hot when the hospital staff has to search high and low to find a fan big enough to cool your body down. Apparently I was always so hot that the fan became MY fan. It went everywhere I went. When I was moved to the short-stay surgical ward after the ICU, the fan came along too. When they came to bring me down to the rehab unit, they brought my fan too. The funny thing though... I never needed it again after arriving on the rehab floor.




It is hard to explain how devastating it was for me to be in the ICU. I am not even sure now how much that time has affected my life. Being confined to four walls for a month will make anyone stir-crazy. Add to that the incessant bells and alarms going off all hours of the day and night, and you get what is affectionately known as ICU Syndrome. When I was taken outdoors one day in October, the sky was brilliant blue, nice breeze and the trees were aflame with color. Just feeling the sun on my face and the wind on my skin was like being re-born. I felt alive and safe for the first time in what seemed like forever.




I have to come to realize that I spend a great deal of time out-of-doors each day. Whether that time is spent walking, hiking, running errands, gardening, moving stuff from the house to the studio.... all of it adds up to lots of time observing my surroundings. The sounds of birds, the pine trees overhead creaking or even the cars driving down our road, all are part of my daily life. Being cut off from those sounds drove me crazy. Even now, if the house is too quiet I have to open a window or door so I can hear things outside. Fortunately, I am able to find a way to be outside everyday now. I walk around the yard, meander to the studio and occasionally drive into town. Each time I head out the door, I smile, knowing that this is right. This is home. I am safe and sound in our little house. It is good to be back.

Pass me the Passy-Muir!

Just kidding. I don't want to wear this thing ever again (if I can avoid it!). But in the ICU, I had to be intubated and placed on a respirator... fun fun fun. It took over a week of being in the ICU (with me trying, in my unconscious state, to tear out the tubes) before they finally gave me a tracheostomy. In other words, they cut a slot into my neck and slipped this device in. Nice... it allowed for air to get in without me having something in my mouth. It was stitched to my neck. On the inside of the device was a balloon, which was inflated so that it would effectively seal the trachea from that point down... ie, no mouth air. It also meant I couldn't speak. Then again, I was unconscious for over four weeks with not much to say. Once I began to waken from this chemically induced coma, my biggest frustration was being unable to speak.

How do you tell a nurse that you are overheating with piles of blankets on you when you can't speak? I couldn't even lift a hand to get someone's attention. There wasn't enough strength in my body to even press the nurse call-button.

On top of it all, I had pneumonia. Yeah, imagine hacking and coughing up loads of mucus, for days on end. Now imagine choking on a straw in your throat at the same time. Add to that, the inability to tell anyone that you're going out of your mind in fear of drowning in your own mucus.

Each night, Nancy or my mom would sit by my bed, siphoning the mucus clear of my trach-tube. None of us slept for three days and three nights. It was awful.

And then as the worst of the coughing began to subside one of the doctors decided it was safe enough to try out a Passy-Muir device on me. So what is this thing of which I speak? It is a cap, with a one-way valve that allows someone with a trach-tube to speak without having to put their hand (or in my case, someone else's hand) over the tube so air comes out your mouth.

With one small press of this cap onto my trach-tube, I could suddenly tell the world everything.
And my first sentence in over a month? "What do you want me to say?"
Yep. Oh, yeah. And we all cried.

From that point out nurses knew NOT to pile me with blankets, NOT to touch my toes (they had to stay uncovered or I would overheat!), and to make sure the fan stayed on ALL the time. I had a voice and I made it heard.

Here, in all it's glory, is my Passy-Muir. Invented by David A. Muir in 1990 who became ventilator dependent after becoming a quadriplegic. Thank you Mr. Muir. Your invention became a ray of hope for me. If I could communicate, I could start to change things. And things did change.

Now imagine how the nursing staff felt when in the rehab unit, I asked to keep my trach-tube and Passy-muir after it was taken out. It came out two days before Halloween. In PT we made jokes about blowing all this hot air out of a slot in my neck. We thought it might be fun to get some duck calls and tape them on to my neck so when I walked and breathed out it would quack. We never did it, but it was a funny image.

Now I have a trach-tube and passy-muir sitting on my kitchen table, waiting for me to do something with it. It is something between a trophy and an artifact. I fought mighty hard to be well enough to get it; I'm not ready to throw it away just yet.

Close to the Edge

My wife did an exemplary job of trying to keep everyone abreast of my condition while I was in the hospital ICU. Even after I regained conciousness after a month in a coma, she still continued to write about how things improved. For all intents and purposes, reading about one's self and having no memory of the events is like reading fiction. This week I began reading the medical reports from my ordeal. I made it twenty five pages into a 295 page document... and then I lost it. What little I know about medicine I learned from my family's medical chaos, from my time working as a videographer for the trauma unit in Miami, and from watching House M.D. Definitely doesn't qualify me to even play a doctor on tv. But I know, when reading, what bad looks like.

Allow me to give you a brief synopsis of what I read and why it hit me so strongly.

These things were all going on simultaneously:
1. Septic shock (BAD news!)
2. anastomotic leak with probable fecal spillage (my guts were leaking internally)
3. Lactic acidosis
4. Sinus tachycardia (sinus rhythm at a rate greater than 100 beats per minute )
5. Leukocytosis (an increase in the number of white blood cells in the circulating blood that occurs as in some infections)
6. coagulopathy (problem with blood coagulating)
7. hyperkalemia (the presence of an abnormally high concentration of potassium in the blood)
8. hyperbilirubinemia (the presence of an excess of bilirubin in the blood)
9. evolving renal insufficiency
10. urinary tract infection
11. fever

All of these spelled disaster. Two surgeries later, I would have experienced two lavages (where your organs are pulled away and washed -inside and out), and would remain unconcious and wired/hosed to every machine in the ICU for a month. Eventually pneumonia would keep me from getting the tracheostomy (surgical formation of an opening into the trachea through the neck especially to allow the passage of air). Every time I came close to conciousness I would try and pull out the tubes in my throat and nose. Not cool. All the while I ran wicked fevers; soaking through multiple changes of bedsheets everyday!

Somehow, Nancy kept fighting. Friends kept visiting. I was unconscious and unaware... but apparently my body knew. When my vital signs were really bad, Nancy would sing to me... and the vitals would normalize almost immediately.

Everyone keeps telling me that my fortitude and strength are what got me through this ordeal. I don't think so. I think I was very nearly gone. My bet is that the huge tug on this side of the universe kept pulling me back. Once I regained consciousness each day was measured by my time with Nancy, visits from family and friends .... and of course the beginnings of PT. I don't know if I will ever be able to thank folks like Lloyd (my PT) for all they did to give me hope. When you can't even begin to move your fingers or your hand... hope seems very far away. Take away the ability to talk and hope is an abyss.

But we did it. Somehow, I pulled through. Reading these medical records is hard emotionally. On some level, they happened to someone else. In as much as they happened to my body, I wasn't there. My recovery now is based on where I WANT to be, not on what they did to me. Each time I go out for my mile walk, I touch the stop sign at the end of our block... just to remind me that I am on this side... this is real! I can touch things again, I can move, I can walk. After two months of ICU syndrome, I no longer hear the nurses' call bells at night. Sleep is comforting, albeit still painful. Soon this pain will fade and pass. My hope is to then re-read this mountain of medical reports. It would be nice to be able to box this ordeal and know my life had moved past it.

Memories of an awesome Turkey Day

I think spending the holidays with friends is something everyone should try now and again. Family is wonderful, but friends for dinner is so completely different. Last night we had an incredible Thanksgiving with our friends Marc and Carol (and Carol's family). Brined turkey, sausage stuffing, three kinds of cranberry sauce, everything done expertly! By the time we got to desserts, I was stuffed! Thank you all. It was a spectacular way to enjoy the holiday.

Visitors

Yesterday my dad, my brother Martin and Hazy made a whirlwind tour of NY. It was so great to see them all! I only wish it could have been a longer visit. After a fun dinner at the Glenwood Pines, we headed to Lansing to watch Aurora at hockey practice. She was so cool.

New Faces

I love those moments when Aurora will let me ply light off her.
Talk about porcelaineous skin!

Yeah, I seldom have images of myself... but enough about me has changed that it was time to show my face. Nancy gave me a wicked-cool haircut this friday. I love it!

Nights are Tough

Seems like the weight of the day accumulates and crushes my body while I try to fall asleep. With less meat on my bones, my knees and ankles are so knobby that they cut off circulation to my limbs when I lay on my side. My arms and shoulders are so out of whack, that when I lay on my side or on my back they either go numb or feel like they are full of fire ants crawling their way out. Tonight my back decided to get in on the fun. As tired as I am (exhausted), I can't sleep because the pain outweighs the fatigue. All of this despite two vicodin, one skelaxin, and an ativan. I should be sleeping like a baby... but this baby just wants to scream.

I know no one wants to hear the bad shit. I try to remain positive everyday, but nights like this make me feel like I am losing my mind. If I could cut off my left arm, just to stop this incessant nerve pain, I would do it. It is absolutely mind-crushing.

Just took round two of heavy meds, hoping for a pharmacological solution to this pain and frustration. I hate taking any medications. But I also need sleep. I think a dose of valerian earlier in the night might help. I worry about adding more to this already potent mix of meds though.

Pain and Torture

That's what PT stands for. Not physical therapy. I have done my years of therapy. It involved lots of talking, and too-soft couches. There is none of that where I do my PT. Just machines that push and pull and prod and creak. Then there are the sounds I make! Creak and groan and wail and gnash and sob.

There's no mistaking one therapy for another. This is the real deal. They are slowly but surely rebuilding my busted body and replacing it with one who just might be able to dance!

Today we dealt with the right shoulder's bursitis, the left shoulder's over stressed muscles, my ongoing pain in my feet, calves and shins, and my abdominal pain from the surgery. Yeah, we hit all that fun in nearly 2 hours of PT.

Somehow though, I wish I could go back tomorrow for more. My ankles and feet feel better after a brutal day on balance boards and wobbly squishy balls. My arms move better after being twisted and leveraged out of their painful locked up state. Best of all, coordination is growing by leaps and bounds. Proprioception is the big word of the week. Can't wait for next week!

The Middle of the Night

It is nearly 2a.m. and I am awake but wishing I weren't. Coffee ice cream (Starbucks!) will be the death of me. I just cant handle my coffee. Keeps me awake for hours! Top it off with some back pain issues, and an inability to get comfortable in bed... makes it so I just cant force myself to sleep.

Instead, I figured it was a good time to share some of my favorite images from my first non-family portrait shoot. My plan is to do more portraiture over the next year. I have a long way to go, but I am starting to have a vision for what I want. In this case, I needed to come up with high school senior pictures for a beautiful young lady. Very specific requirements. Here are the results:

Okay, you asked for it

Since I can't make pots for a few more months (need to wait for this deep wound to heal)...here are a few of the pots I made before I went in for surgery. More coming later in the week as we start packing pots to ship orders that were placed back in the summertime. That's right... orders are almost finished. Anyone waiting on anything blue or cranberry have a couple more weeks to wait since we need to mix more glaze and then glaze like mad. Should be at least one firing's worth, maybe two.

History of the White Deer of Seneca Lake

This is verbatim from Seneca White Deer Inc.

http://www.senecawhitedeer.org/history/whitedeer.php

This is a fascinating story, and day after day, folks stop along the fenceline just to see these white deer. They arent tame but they are less afraid of people. Pretty amazing!

WHITE DEER HISTORY

How It Began

In 1941, 24 miles of security fencing enclosed the area now known as the Conservation Area (CA) of the former Seneca Army Depot. Captured within the fence line of the CA were several whitetail deer (Odocoileus virginianus) of the normal brown coloration. Within a few years, however, something unique happened. White pigmented deer began populating the brown deer herd within the CA. The U. S. Army, sensing something unique was taking place, gave the white deer protection while they managed the brown deer through hunting. This was necessary to keep the population within the carrying capacity of the habitat of the CA.

How did the white deer coloration manifest itself within the CA?

It appears one or more of the brown whitetails originally confined with the CA, carried the recessive gene for white coloration. Over time and with protection from the military, this normally recessive gene continued to manifest itself. Today, the CA is home to the world’s largest and only herd of white deer, nearly 200 individuals strong. Such a density of white deer can be found no where else in the world!

White deer have brown eyes unlike albino deer that are pink eyed. It is also not uncommon to see brown does with white fawns or white does with brown fawns. The color combinations of white and brown deer range from gray to brown as well as white spotting along with pure white.

How are they protected now?

To protect the entire deer herd, the maintenance of the 24 miles of fence must be maintained. Within the fenced area of the CA, the white and brown deer can be properly managed through hunting to keep the herd healthy. If the fence line degrades, and the deer escape, especially the white deer, they are heavily sought as trophies and will perish quickly.

How you can help protect them in the future?

With your help, this unique natural resource, the white deer of the former Seneca Army Depot, can be preserved for generations to enjoy and marvel. To help in this endeavor, check out on how you can assist

COPYRIGHT © 2002-2009 Seneca White Deer Inc.

Thanks to Seneca White Deer Inc. for posting this great information.

Field Trip!

After making my first foray into Ithaca for out-patient physical therapy (thank you for the ride Douglass!!), I spent the rest of my morning stretching and noodling about the house. I was just about to wash dishes for a few minutes when I got a call from Jeff (from the Cayuga Creamery).

Would I like to go on a photo excursion to take pictures of the white deer, says he. A field trip thinks I. OH BOY! A chance to get outta the house and not a chore, not a doctor's appointment, not to the hospital! YOU BETCHA!

Three thirty rolled around and we were off to the east side of Seneca Lake, to the old Seneca Army Depot, where they have snow white deer. The light was falling and the air had a nice crisp snap to it.










We were able to get pretty close, oftentimes within 10 feet. Fall light is fleeting and by 5pm, it was too dark to shoot more. Coming home I was so excited and tired. Jazzed to be out doing something fun, and tired from getting in and out of the SUV, sore from trying to walk and stand on the uneven roadside ditch grass. But most of all, I was thrilled to have friends who are willing to go out of their way to come and visit, take me places and keep me from going stir-crazy while I recuperate!

March of the Tin Potter

Today marks yet another Indian Summer day; overcast, but warm and enjoyable. I'm still waiting for that fall misty rain that always seems to mark November's arrival. Then again, anything that curtails my walks outdoors would definitely hinder my recovery.

I have found over the past few days that walking out on the road has gotten easier and I can go incrementally further. There is always pain; due mostly to lack of muscle tone and flexibility. It's as though I have the physique of an infant trapped in a 200# body. Really hard on the joints!


Aurora is watching Dune tonight. Things she noticed: the Fremen soldiers using the "weirding module" look much like I did with my trach tube in place. The guild navigators had tubes running from the back of their heads to their nose which apparently much like the O2 monitor that I wore in the ICU. That O2 monitor left a groove in my forehead. Aurora and Nancy said that grants me entry into the Dent Head Club. Now we all have dents!

Small Successes

Yesterday was my first visit to Dr.Wang (our local traditional Chinese herbal medicine and acupuncture practitioner) since May. When I last saw her, I was frustrated at my inability to lose weight... acupuncture can be very helpful in restoring/invigorating metabolism.

When Dr. Wang and I locked eyes yesterday she took a double-take and then looked like she might cry. My heart sank, knowing that she had no idea what I had been through. For the better part of twenty minutes we talked about the ordeal. Nancy had to do most of the talking because I totally lost it. I find it incredibly difficult to talk about what was done to me in order to keep me alive.

I had been worried about going to acupuncture because usually when she works on me, I am on my side and she fills my lower back and shoulders with needles. Yesterday though she kept me laying on my back. Apparently my "life force" was severely depleted by the month and a half long sedation. Yeah... I would have to agree. I have no stamina, no strength, and everything hurts all the time.

During acupuncture though, my body floated. No pain, no sensation. I wish sleep brought such relief. I am sleeping like shit. I might get 3 hours uninterrupted. Then I either am in too much pain to fall asleep or I have to go to the bathroom, or I simply cant get comfortable. Any one position too long just aches.

Sorry to bitch and moan.

The good news is that our friends Carol and Gordon loaned us their battleship of a recliner... this MONSTER Barcalounger. Finally I was able to get comfortable downstairs! This means we can get rid of the loaner from the rental place in town.
And it means I can nap without having to climb stairs to our bedroom.

Nice.

Midway through

We are half the way through Sunday already. Most of it I spent sleeping in a recliner after waking up at 6am and was unable to get comfortable in bed again. I am really looking forward to the medical recliner than is supposed to arrive here tomorrow some time after noon. I need a lot firmer support than most cushy recliners feature.

It does seem like some of this increase in pain is due to opiate reduction. My Fentanyl patch is a lot smaller this changeover. Another 5 days and then I am off the patches.

The great news is that I get to go to acupuncture tomorrow morning! I am a little nervous because I cant lay on my stomach, and getting onto my side takes a lot of effort... but we'll figure something out. For now, I am just excited to know I can get help to stem the waves of pain my back is going through.

The first day

Today is my first full day home from the rehab unit. As weak as I am, I am still moving around the house, finding ways of maintaining stability... all in all, doing well. I'm looking forward to getting outside more, walking greater distances, and most of all, I look forward to seeing all my friends and family.

Shaved, Shaken and Rolled

Since my first surgery back in September, and through all the subsequent surgeries and recovery, I have seen my blood pressure increase into that zone where it needs to be treated with meds. Bear in mind, I never had high blood pressure prior to this time. The attending doctor decided last evening that it was time to do an EKG to see if anything was wrong (damaged) about my heart. Nope. At least that was what the EKG technician had to say. My surgeon thinks that this high BP is due to the stress of being in the hospital and will likely go away as soon as I get used to being home and start to truly rest and recuperate. Let's hope so! As a result of the EKG, I had to be shaved in yet MORE spots on my body. Suffice to say, I have been shaved or had hair ripped out due to tape or bandages everywhere it seems, except my feet.

It is scary and disturbing to think that all the time in the coma has had such an effect on my body. Being horizontal for over 6 weeks wreaks havoc on your organs, which are designed to be vertical most of the time.

On top of my heart trouble fears, I also had a wickedly brutal two days of PT. Today we went outside again. This time walking on uneven ground using trekking poles to steady me. I didnt really think about how exhausted I was, but when I got to my OT session I nearly passed out. To recover, I sat down in the recliner in my room. Two minutes later I zonked out. I had to be rolled to back to my room because I was so unsteady. Scary.

Now, I am ready to sleep and get ready for my departure tomorrow. I cant believe it is finally time for me to leave the hospital! I will have my own bed to sleep in tomorrow night. I still have about 1/10th my original strength, so even simple things like walking to the bathroom exhaust me. But at least now I can move that far.

Not So Hot

Feeling pretty beat tonight, so I wont try writing much. I head home friday so expect more fun then.

Helpless

Tonight I figured I would write a little bit about being helpless. As anyone who reads this blog regularly knows, I spent a month of this fall in a coma. In the following three weeks before I entered the rehab unit, I drifted in and out of a drug induced haze. I was unable to move a muscle. Not a finger. On top of that I was unable to speak for the better part of two weeks. During this time I was expected to participate in PT while still in the ICU. In order to do this I was lifted bodily out of bed by means of a hoist device. I would be strapped in, nylon bands cutting across my torso and groin, pinching my catheter, my feeding tube, oxygen tube, and a half dozen more wires and hoses getting caught on all sorts of things. This then would pull at my face, crotch, chest, you name it. It was never simple. Some days I would get whacked in the face (more than once!) with the spreader bar of the hoist. It was never uneventful or relaxing.

Then they would move me to a reclining chair with the premise that being upright would help circulation and help get me over my pneumonia (which it did). For the first week, being upright made me cry. It was all I could do to sit up. I couldn't even hold myself upright. I would start to lean within about 4 minutes. Some days the PT nurse would do range of motion exercises and I couldnt even add any input. By the end of the second week, about the time I could finally talk via this device attached to my trach tube, I was ready to speak my mind.

Instead I found myself so grateful to be able to communicate, to be able to tell Nancy how much I loved her, to be able to talk to Aurora to let her know I was ok and that she was loved... with all of that foremost in my mind, I couldnt really complain.

Which brings me to my thought for the evening: there is a transition from being helpless to being able to begin to help yourself. For me, I knew I was making that transition when I was able to help encourage others on the rehab ward. So what does it mean to help yourself? What does it really mean to be helpless? How does one ask for help? I am lousy at asking for help. Yet as soon as I was unable to physically ask for help, it came out of the woodwork.

I cant begin to thank everyone who has helped Nancy, Aurora and I. Without a doubt, we couldn't have done it without help. I would not have made it back from that coma without all the help we received. Saying thank you sounds so small compared to how I feel. I am so thrilled to be alive... to be back... to know I have more life to live.

Many friends have asked what it was like in the coma. I am going to try to write about it. I will probably try to put it into a small book form rather than the blog. If you have a desire to read it when it's finished, let me know. I can tell you it wont all make sense and the imagery is both personal and surreal.

For now though, I need to catch up on some sleep before another day of PT tomorrow.

Anxiety and Fear

As I was posting to Facebook tonight I realized that for all of my attempts to write about life here on the PT ward, I have left out some of the more difficult aspects: Anxiety and fear. In my case, the anxiety hits me like a ton of bricks every night, right around 8-9pm. Makes falling asleep very difficult. It seems to center around my fear of falling asleep and not waking up for a month. Having experienced my coma for a month, I dont think this is an unreasonable fear. Things are improving bodily, with each day showing physical improvements and more control while walking and such. The fear of more surgeries and complications though hit me broadside as soon as I try to go to sleep. The upside to all the heavy duty PT is that I cant fight off sleep. I am off to zzzzs about 8pm. But on nights where the exercise has been light, or in the case of weekends, just about non-existant,... I am still wide awake till nearly midnight. Not a great way to get a good night's sleep.

I would love to find solutions to this ongoing sensation. Some part of me is thinking it could be tied to any one of the numerous meds I am taking... anti-clotting meds, zoloft (still havent gotten anything definitive about zoloft), various pain meds like fentenol (sp?), vicodin, blood thinner, blood pressure meds,... all of which have likely side effects. The question is whether that is the root cause. My suspicion is that this anxiety is pharmaceutical rather than psychological stems from the timing. 8-9pm, regardless of lighting, sounds, or visual stimuli make me think it isnt just night falling. Gotta be something more.
Ideas anyone?