Saturday, March 18, 2017

now, maybe it has been enough

There is a trail up to the lower ridge just above the talus and one then looks down into Hidden Valley. The trail continues up, just to the left of the highest point. A week ago, Glen and some hiking buddies continued on across the valley and climbed up to the top ridge. He’s 70! And they kept going over the top to extend the hike. Unreal.

It took nearly two months, but I finally developed enough stamina to hike to Mill Creek from where the Nash is set up near Old City Park. It was a bear, however, to hike back up from down along the creek. Sure was glad to see the progress, though.

Last week I had gotten strong enough, sort of, to hike upstream to a set of stairs that took me back to the top. This is the lower set of stairs.

At the top of the lower stairs, there’s another set of stairs that take you the rest of the way. Now the stairs are the bear. A 1:45 hour hike that is presently my max.

Then of course, being in Moab, it is hard to go for a hike and not come across rock art.

It didn’t take all that long to work 4 months of processed food out of my system. Sure started to feel better. Good grief, many eat like that all the time!

I knew this past winter must have been bad. It was the first winter that I could not get into the winter solstice, my favorite day of the year. Sure hope it never happens again because it’ll no doubt be another bad winter. And I’m not talkin’ about the weather.

I’m hoping that all my medical problems are over. It’s been 8 months, enough already.

I came across a book on the web, We Have Lost the Pelicans by Paul Mathews. There was a line that went along with it, summing it up.
“London, 2044, Britain has a new president – a celeb with little brains, giant ego and no idea about politics. What could possibly go wrong?”

It’s lookin’ good for me pulling out the last week of March and heading south. I stopped to think and realized there is no way I can rack up hundreds of miles on interstates just sitting there and looking out the window. It’s not me. I’m going to stay on rt. 191 as I head out of Moab and then at Alpine, AZ, cut east over to NM on rt. 180 and down to Silver City. I have to take care of some things in Silver, then in Deming, and finally in Sierra Vista, AZ by April 1. It is going to be a hectic week. Hopefully, by the end of April, I’ll get back to some normalcy. I’m wishin’ and hopin’.

This is an awesome site:
The Shelter Blog

‘Habits are at first cobwebs, then cables.’
~ Spanish Proverb

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Tuesday, February 28, 2017

kindle and almost time to head south

Since I didn’t do too well with traveling on my own last year, I think I’ll spend this year traveling with The Doctor.
Oh wait, no, I came across this call box in the Moab library. Definitely brought a smile to my face since I’m a fan.

Okay, this is only for those who have a Kindle. Two things. First, you are probably familiar with all the sites on the web for free ebooks formatted to Kindle. If you have not already checked it out, look at the free ebooks offered on Amazon.
Amazon > Kindle Store > Kindle eBooks > Best Sellers > Top 100 Free
The free ebooks are not best sellers but I always manage to find a few to download. I don’t check out the site much, but there always seems to be a new list when I do. Don’t be put off by all the type books you would never read (can you guess?), there are other genres scattered among them.

This second thing is just strange, well at least to me. My Kindle has been acting up the last few months, slowing down and freezing. Restarting always takes care of the problem for a while. I’ve read close to 400 ebooks on it (some I only read the first and last 20 pages if I’m not getting into the book). I currently have over 200 ebooks on the Kindle. Since I use it everyday and a Paperwhite is so inexpensive, I ordered a new one in case my present one dies while out off-the-grid. Okay, this is the strange part. Here in Moab I’m using the OverDrive app (stellar app) on my little iPod to borrow ebooks from the Grant County library. These get scooted onto the Kindle for reading (through the Amazon site). Well, until one day. I had ordered the new Kindle on Amazon that morning. Later that day, I borrowed an ebook through OverDrive but it never got to my Kindle. Strange. Then I noticed the default setting for the ‘Destination’ for ebooks on Amazon had converted to ‘Sebastian’s 2nd Kindle.’ What!? The new Kindle was still sitting there in the Amazon warehouse! There had not even been time to package it for shipping. I had to sign onto Amazon > Manage Your Content and Devices, and change the default destination back to my original Kindle. I just found that pretty strange. I did finally manage to get the borrowed book to my 1st Kindle so I could read it. Unreal.

Before getting down to Moab, I didn’t know about the OverDrive app. A friend told me about it, had me download it to my iPod, and showed me how to use it. It blew me away. So I’ve been reading books from some of my favorite authors lately, Lincoln Child, Douglas Preston, Lee Child, and JD Robb. As you know, I don’t live with a TV, so this deal could not be better. Thanks Theresa!

I save paperbacks I’ve read over the year and exchange them at some places I know of in NM each winter. Kind of missed that this winter. But I lucked out at the senior center in Moab. I was able to exchange my large tote of books there. Not bad.

This is the view from my back window while on Glen’s property in Moab. I can’t conceive of how I could have gotten through the last few months if Glen and Lisa had not let me stay here. I had to get to a hospital three times a week for wound care, twice a week for PT, and then there was the pneumonia. Lisa and Glen, thank you SO much.

Looks like I will be heading south next month. Remember I thought I would be doing it back in December? Clueless. I have something to take care of in NM by the end of March and another in Arizona by April 1. Nothin’ fun and I’m certainly not looking forward to the days of driving. All my Wait, Wait podcasts I have not listened to yet will get my through. I won’t have the time to take a back route so I will be racking up miles on an Interstate. I’m gonna hate it. By the end of April I might be back to the style of life I enjoy. We’ll see.

Start by starting.
Meryl Streep

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Tuesday, January 31, 2017

not quite enough

This is not my rig.

I met Victoria in early 2013. Back on the February 2014 page, I wrote about her and her one-eye dog, Henry. At one point, Victoria had to put him down and after a couple years, got another pet. It’s healthy to have a pet if living alone. Last year a fire totaled her Dolphin.

Her sister raised enough money online so Victoria could replace her rig. What a lifesaver.
Whenever I saw Victoria’s Dolphin, she was never at a hookup, not ever for a month or two in the winter. She’s tough.

I thought I’ve had enough medical problems since all this started back on July 31. Apparently not. I went in to see a NP I’ve been working with since I got to Moab. I had an appointment to get a referral to a doctor to have some work done on my chest wound. I had been extremely tired for the previous four days, pretty much slept the whole time and had to cancel a couple appointments. I knew I was way dehydrated, but when my blood pressure came in at 80 over 60, it kind of blew me away. The nurse also did not like the sound of my breathing. I was rolled into the ER and admitted for respiratory distress. I was started on fluids and labs came back positive for pneumonia. Then some more rolling down the hall into the hospital. Wait, wait, been here, done this, didn’t particularly like it! There I found out I was quite anemic and have been for a long time. Now I have a weekly iron IV.
Moab Regional Hospital is a great little place; stellar nurses and CNAs. I loved staying there and did not want to leave.

The following week I had an appointment with the doctor to see about doing some work on the chest wound. I then found out my body is not producing red blood cells as well as it should be. I got flashes back to my bone marrow transplant. Anyway, now I’ll be seeing a hematologist. I wonder if there will still be national forests when I finally get through all this?

value kindness

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Friday, December 30, 2016

back on the vac

I could live in a watch tower, a treehouse without the tree. The one I wrote about on the August 2013 page, up in Oregon would be a fine place. Quiet, solitude, and a room-with-a-view.

I came across one for sale on the web but it sure would not be compatible for full-time living. It looked like an 8’ box on top of a tall, spindly tower. Would not want to be up there in a windstorm. I’d be upchuckin’ over the side.

I wasn’t able to work on sudoku puzzles while in the hospitals and nursing facility. The mind just was not able to cope with puzzles and logic. Now with all the meds and whatnot out of my system, I’m enjoying the challenge again. I had to go back to much easier puzzles than I was doing before, but it’s slowly coming back. I also had to go back and relearn some techniques.

‘Sudoku’ is a registered Japanese trademark filed by the Nikoli company. Similar number puzzles have been around since the late 1800’s, but the rules were slightly different. In 1979, Dell magazine started publishing puzzles with the sudoku format and called them ‘number place.’

Nikoli (Nee-ko-lie) is a Japanese company that was established in 1980. Nikoli popularized sudoku into the most popular logic puzzles in Japan and then later, presented it to other countries. Old Dell magazine readers probably went, Wait, wait, I’ve seen this!
Nikoli’s president was into horse-racing and the company is named after the horse that won the 1980 Irish 2000 Guineas Race.

Many prefer Nikoli puzzles over those generated by computer programs and the company offers numerous books to keep one challenged, no matter what level one is at.
Newspapers can be another source for challenging sudoku puzzles.
Frank Longo offers a series of martial art (belts) sudoku books. Each book covers one level of difficulty.

Back on a negative pressure vacuum pump. The chest wound did no seem to be making any progress towards healing in the month I have been in Moab. I asked if I could get back on a wound vac and it was approved. The other wounds are healing so the pump is just for the chest wound. It can be an inconvenience wearing the satchel but I really don’t care so long as healing is enhanced and the wound protected from infection. This is my fourth wound vac and the loudest, by far. Good thing it does not overheat because I bury it under a pile of clothes at night so I can sleep.

I like simple humor.
“A book is something we used to have before the Internet. It’s sort of a blog for people with attention spans.” This might be from Stephen Colvert.

You have to create the quiet to be able to
listen to the very faint voice of your intuition.
Jon Favreau

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Wednesday, November 30, 2016

back with Meadow & Mesa

I’ve been trying to come up with something to write for the November page but I’m having trouble focusing, let alone coming up with something interesting. So since I can’t, I’m going to take Rob K’s suggestion and just give a short update.

I got a ride with Lisa and Glen on Tuesday, Nov. 29 from SLC down to Moab. I left the Nash on July 31. So much for planning to be away for a few hours or a night at the most. It felt good to be back with Meadow and Mesa. They recognized me but seemed somewhat surprised that I was here. It didn’t take us long to get back to our old ways. Much easier for me to cope when my pets are around.

M&Ms last couple months of being cooped up in the Nash was apparently getting to them. One or the other would make a run to freedom when Glen opened the door to check on them. They can be so fast. He emailed this text to me while I was in the hospital.
“Normally I just pull open the door a crack and make sure no one is there but Mesa was right there and just bolted out the door. He ran away about 20 feet and turned around and came back and started rubbing against my leg. So I reached down and picked him up, opened the door so I could toss him in, and Meadow was on the counter and leapt out. It was obviously a tag team effort. So I said okay, okay have it your way and I just left the door open and let them both run off.“
They didn’t venture out of the yard and came back in after they did some running and climbing trees. Now I let them out when I get back from wound care.

I’m finally back out on my own, but I’m feeling kind of dazed. It’s as if I can’t get back to some sense of normalcy. Granted, I’m very weak but the gimpy arm is quite a hindrance. I knew it was going to be but the reality of it is really hitting home with so many everyday things. The first time I opened the driver’s door of the pickup I had to stop and think how I was going to get up. Another time I went to clothespin a shirt onto the short clothesline I have in the shower stall. It is not as easy when only one arm can reach up and do the work. I almost made quite a mess the first time I had to lift and pour from a box of litter into the litter box. The numerous, simple, frustrating tasks got to be a bit much a couple times.

I had to bring two tools from the truck into the Nash. I still cannot open most bottles and jars. I wonder if they still make strap wrenches.

It’s now the middle of December (I pre-dated the upload) and I’ve been working on building back some strength and extending range-of-motion in my right arm and shoulder. The therapist gave me seven exercises to do. Each round takes 15 minutes and I’m supposed to do three rounds a day. There has been progress. I also try to go for an hour walk most days.

This past summer, I left the White Mtns. because the road getting out would have been real bad once the monsoons hit. I would not want to attempt to pull a trailer along it. So I went to the Kaibab plateau, and came across a bacteria I could have done without. In hindsight, I would rather have gotten stuck in the mud.
The last time I was up on the Kaibab, I had that episode of benign paroxysmal positional vertigo (BPPV) and passed out. I wonder if that was a sign to not come back to the Kaibab.

After weeks with just letting my four wounds heal naturally at the nursing facility, I was put back on a wound vac. If I had been on a wound vac all along, the wounds would have healed by now. I’m more than a little bummed by this but it was not my call.

I wanted to continue with the wound vac when I got down to Moab but wound care didn’t think it was necessary. Hmm. So I still have four wounds that need more care than I can take care of. The one in my chest still goes down to the bone. Not good.

The one on my elbow is also a problem. Then there are the two on the inside of my upper arm. This is really dragging. I had the skin graft on September 20 and these four places that didn’t take, are still a concern. I drive to Moab Regional three times a week, sit in a chair, and have a wound care nurse remove the dressings, clean out the slough, and apply new dressings. Takes about 40 minutes. The tissue is granulating, so maybe healing will pick up a bit.

I originally planned to head down to southern New Mexico shortly after I got to Moab. What a dumbass idea. First off, I was not physically capable of doing so. But it is the wounds that are keeping me here, especially the one in my chest. I don’t think I’ve ever had a wound so open to infection. It’s scary. I feel this is the safest place for me to be, and thank the gods, Glen and Lisa are letting me stay here longer than I had planned.

I’ve been dealing with medical problems since July 31. I so want to get past this phase of my life but I don’t want to do anything to jeopardize healing. I so miss being out off-grid. The lifestyle nurtures me. This present lifestyle—not so much.

Do just once what others say you can’t do,
and you will never pay attention to their limitations again.
Edmund Brown, Jr.

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Monday, October 31, 2016

the graft

As I often do, I went back to last month’s page and added/tweaked some text and added a photo.
I think it was Lisa who reminded me that I did not have any medical insurance from 2002 until 2012. I sure lucked out with the timing.

Glen and Lisa headed east last month and rented this 42’ boat from Mid Lakes Navigation. The lady in the photo is Lisa. They spent five days cruising the Erie Canal. The boat had a 50 hp. diesel engine so top speed was 5.5 knots.
Glen sent me some text (I wish I could write as well):

Our boat was a steel hulled craft that was designed and built by Mid Lakes in their own shop. The design was modeled after English canal touring boats that are sometimes called long boats. It was pretty amazing to look around their boat building shop. It was quite an active operation. The company is in the process resorting 3 older boats that they have acquired. The latest one is the Harriet H. Wiles. Mid Lakes had actually built this boat back in the 80's and sold it to another tour company. Now they had reacquired it and had just finish a total rebuild. The craftsmanship on this vessel was amazing.

Before they handed us the keys to our boat a man from the shop took us on a shake down cruise down the canal to the first lock. Rather then just telling me what to do he was very good about just letting me get a "feel" for how the boat handled. Since we didn't crash through the lock gates or run aground our guide said we were good to go. As we took him back to the shop he told us how much he loved his job of building these boats. And it was obvious that there was a lot of pride as he showed us all the details on the boat.
The company we rented from offers 3, 5 and 7 day trips.

The Erie Canal was originally made in 1817. The early canal used very small boats pulled by mules. Around the turn of the century people stopped using the canal. Trains and roads were faster. The state of NY embarked on a major rebuild of the canal so that large tugboats pulling barges could use it. The canal was greatly widened at this time around 1914.
By the 1950's commercial traffic was again down to almost nothing. The canal was almost abandoned but at this time recreational traffic greatly increased. Lots of boaters began travel between the Great Lakes and the east coast via the canal. Today the widened canal is over 100 years old and so it's very over grown. Large trees line the waterway and so it's more like traveling down a small river then a man made canal.
With all the recreational traffic on the canal now hundreds of nice restaurants have sprung up along the way. Once old industrial areas are now quite up scale.
Lisa wanted me to be sure and tell you that every town had excellent ice cream stores.
It's a good thing these boat are steel hulled. They are totally crash proof and that's a good thing because it was pretty amazing the stupid things I saw people doing like crashing into sea walls head on. I almost have to look the other way when I would see people coming into the dock driving these behemoths.

Another boat; it all sounds SO cool.

Remember this camping spot from the August page? This is where it all started. If you are driving down this spur up on the Kaibab, turn around and go to another area. Do not keep driving down the spur if you are pulling a trailer because you will probably get stuck as you approach the bottom.

My discharge diagnosis from Kane County Hospital read: “Cellulitis; Dehydration; Shingles; Strep throat (strep A [gargle with salt water!]). Associated symptoms: tingling and he has had a cold for several days (that’s not true). Patient’s pain was difficult to control but fell asleep around 4 am. Pt continued to have change and worsening clinical status with blood pressure beginning to drop and mental status decline.” Still no diagnosis of necrotizing fasciitis! They sure seem to be liable for all the muscle that had to be cut out due to their misdiagnosis. Guano

Discharge Diagnosis from first stay @ Promise: “Hypernatremia; Hypertension; Severe Malnutrition; Severe debility.” Definitely not in my best heath.

Theresa gave me another chuckle. She said I’m doing more moving than when in the Nash—six moves since July 31.
My limit for staying in one hospital, from Medicare, was up so they moved me up to a hospital in Bountiful for six days (where they wouldn’t let me out of my room!). Then back to IHC on Sept. 20 for my skin graft. Stayed there four days, then sent back to Promise. As Theresa said, it is a good thing I’m traveling light. After Promise, I was moved to a skilled nursing facility, which should be my last place of residence before getting back to Meadow and Mesa.

A therapist brought me a few pages he downloaded from WebMD; he wanted to learn a bit about the bacteria. Some of this was new to me:
“About 1 out of 4 people who get this infection die from it. Many people who get necrotizing fasciitis are in good health before they get the infection." I would imagine the 1 in 4 did not get to a hospital in time, were in poor health, or the doctors couldn’t make an accurate diagnosis. This is just my take on it; could be wrong.
“Necrotizing fasciitis is caused by several kinds of bacteria. Some of these bacteria also cause infections such as strep throat and impetigo. Usually the infections caused by these bacteria are mild. But in rare cases they can cause a more dangerous infection.
“How is it diagnosed? The doctor will diagnose your infection based on how suddenly your symptoms started and how quickly the infection is spreading. The infected tissue may be tested for bacteria. You also may need X-rays, a CT scan, or an MRI to look for injury to your organs or to find out how much the infection has spread.” Sure wish the doctors down in Kane County Hospital had know this.
“How is it treated? Early treatment of necrotizing fasciitis is critical. The sooner treatment begins, the more likely you will recover from the infections and avoid serious complications, such as limb amputation or death. You may be treated in the intensive care unit at the hospital.” Sure wouldn’t want to be anywhere else.
“To help prevent any kind of infection, wash your hands often. And always keep cuts, scrapes, burns, sores, and bites clean.” Really, do this.
“You can also get it in a muscle strain or bruise, even if there is no break in the skin.” This, I do not understand.

A split-thickness skin graft is used to cover large, shallow wounds. Only the epidermis and a little of the underlying dermis is cut off with a dermatome. Check out the link below to a youtube.

Full-thickness skin grafts are used for more severe wounds. A patch of skin with underlying muscle and blood supply is transplanted to the area to be grafted. The graft is removed with a scalpel rather than a dermatome. After the surgeon has cut around the edges of the pattern used to determine the size of the graft, she lifts the skin with a special hook and trims off any fatty tissue. The graft is then placed on the wound and secured in place with absorbable sutures. Don’t think I want one of these.

The skin graft surgery took about 2 ½ hours. When I woke up in the recovery room, I felt fine and sat up in bed. I was immediately reprimanded. I kept sitting up from time to time and I guess the nurse just gave up. No pain from the skin graft, and, at that time, none from the harvest site. I wanted to get an idea of what I just went through so the next day I accessed youtube. I only looked at one video and thought they did a stellar job covering the process in a 4 ½ minute video.
It’s called, ‘Live Surgery Split Thickness Skin Graft.m4v’
definitely, check it out:

Live Surgery Split Thickness Skin Graft

What did you think of the electric cheese slicer—the dermatome? With me however, the surgeon spent more time using it. He took a 10” strip along my right thigh. As you saw, each strip of skin is then run through a hand crank meshing device, to enable the skin to expand. Once again, it gets worse, but of course. As the surgery went along, the doctor went back two more times to take parallel strips.

This photo was taken 6 days after the graft.

This is the last photo I have of the skin graft; 20 days after surgery

My harvest site ended up being 7” x 10”. I only have two photos of the harvest site. This was taken 36 days after the dermatome; almost healed.
The pain from that for the first week was intense. The week of the horrific nightmares was the worst week up to this point.

They cover the site with this thin mesh and staple it down. For the first 3 or 4 days, the wound seeps. And yes, my hospital gown and top bed sheet would get stuck to it and I had to pull it away. It’s truly hard to believe the amount of fun I am having. The first morning they had to change my bedding and gown due to all the blood. Come ON—enough already! As the wound heals, the mesh around the edge loosens and the staples are pulled out. Each day a nurse trims lose edges. Unfortunately, a free edge did catch on something from time to time. In the previous photo, you can see how the mesh got trimmed down to this last piece.

It was good to get back to Promise. I like this place; they take good care of me here. A number of nurses and CNAs have voiced how far I’ve come since August 9. They said I was so loopy from the meds, in a lot of pain, and could barely move. I remember all the times I messed the bed and the bed baths. Oh, for joy. It’s good to be making progress.

The skin graft is smeared with an antiseptic goop (maybe bacitracin), areas of concern are then covered with something like a thin plastic patch. It’s all then wrapped and held in place with netting. Notice the ladies of wound care tied it up in cute little yellow bows instead of tape. And of course they did not tell me this. I first noticed it when a nurse pointed this out. The wound care ladies were long gone.

This is 10 days after surgery. Even now, over a month later, one can still see the mesh pattern in the skin. The skin feels like leather. Notice all the staples? When I looked at the staples, I thought of future pain. I planned to ask for a pain med prior to their removal. Can you guess it did not go according to plan?
One morning, a few days later, wound care was changing the dressing and noted it had been 14 days since the surgery. Staples are supposed to be removed after 10 days. I’m thinkin’, uh oh. Yep, they decided to pull them all out then. What!? Wait, wait, pain meds, pain meds, I want pain meds! The response was, Oh, it won’t be too bad. Uh huh. On the whole it was not all that bad. Then they got to one in the middle of my chest that was pretty much buried in the new skin. The staple did not come out with the first yank; it took two. Ouch!

From the video you can get an idea of how that large negative pressure dressing over my open wound was done. Cutting the black vacuum sponge to size, covering it with draping (plastic sheet), leaving a hole for the vacuum tube, and attaching the vacuum tube. What did you think when they turned on the vacuum pump? Mine didn’t sink below the skin like the wound in the video, but one sure knows when the vacuum is turned on. On my wound dressing, a diluted bleach solution was dripped into one side of the dressing and through a perforated tube running along to the other side where the vacuum tube was attached. For skin grafts, there is no irrigation. The negative pressure of the vacuum keeps the skin graft tight down against the tissue, pretty much assuring a good bond. It was on for five days and then switched to a more conventional dressing.

My plastic surgeon talked with the surgeons who did the first three surgeries back in the first week of August. They were surprised I was still alive, let alone still had my right arm. Good grief.

A few days in the first week of October were tough. What I’ve been going through the last couple months all seemed to hit me hard. Luckily I was able to pull myself out of the dumps. I was coping well (relatively) up to that week. I so much want to get off all these meds, and hopefully, start thinking clearly again. Then there’s getting off the nightly feed bag and getting back to my kind of meals.

Then I had a week or so when things all seemed to blend together. I was confused and woozy, but thankfully it too passed. And there had been no change in my meds that might have set if off. Hmm.

I was really hoping to get accepted into HealthSouth Rehabilitation Hospital for acute in-patient rehab on my R shoulder and arm. But I could do stairs, squat, raise my left arm, do well on balance tests, and many other things. They would not accept me merely for my R shoulder and arm. Then my case manager told me about a skilled nursing facility that could provide more therapy on my arm and shoulder. Sounded good and that is where I was sent.
When I got there, the director of therapy tested me for balance. I tested okay, and he then informed me that they will not provide any physical therapy for me. WHAT!? What about my calves, ankles, quads, inner thigh, hams, and glutes? PT takes care of the body below the waist. This is SO wrong. I groused to the resident advocate and the overall director. Some changes were made and my OT here could not be better. Both my OTs (the best) are working on range of motion for my R arm and shoulder. When I told my weekend OT, my goals, she went out and purchased a 5-gallon bucket. How thoughtful is that? Both OTs are working towards me being able to lift the nine 5-gallon buckets of water (40 lbs.) up onto the Ram’s tailgate. We probably have 40% of the goal nailed. Not bad.

They both come up with ideas. The OT here, came to get me one morning and I was still brushing my teeth. He said, What are you doing? I knew not to respond. He said, right hand. I kept silent, thinking I can’t reach my teeth using my R hand. He continued to just stare at me. I’m learning. That was his signal to assist with my L hand.
My OT sessions have been going well but in the first two weeks, NO OT session was provided on TWO of the days. I’m here for therapy!

A few therapists showed me movements I can do on my own this winter. That should help quite a bit with my continued recovery.

Various strangeness;
The second time I went back to IHC, I wasn’t allowed to have thin beverages. Have you ever been served a glass of water with a spoon in it? I had to stir up the thickener. For water!
The medical flight from Kanab, UT to SLC had a base rate of $17,250 and a mileage charge of $63,210 for a total bill of $80,460! Whoa. As I understand it, Medicare covers transportation costs if there is no other way for the patient to move from place to place. So far Medicare has been covering all transportation charges. That’s impressive.
When I got to my present (and, hopefully, last) place, the speech therapist (4th so far) tested my swallowing, once again, and found my swallowing and speaking muscles, to be too weak. So I have 7 exercises to do each day. Prior to this, I never heard of doing exercises to strengthen one’s tongue. For two of the exercises, I close the door; the sounds get pretty loud. Good grief.
Now that I’m approved to drink thin beverages, I was handed a paper on allowable beverages, one was, ‘alcoholic beverages.’ I asked about this and it was confirmed. I remember the first beer that a friend brought. It tasted SO good. First one since July. One is more than enough for me; back in the Nash, a 12 oz. bottle lasts me 3 or 4 nights. If a friend left me with a second beer, I have to hand it in at the nurse’s station so it can be locked up in the refrigerator. When I want it, I have to go and ask a nurse for it, hoping the nurse is not off on a break or counting out meds. Understandable, but still strange.

Pinball sent me an ad she came across in the “un-classified” section of a local paper. “RV/Trailer Parking Space on 40 acres fenced with cattle guard. 45 foot shade canopy with side patio awnings. $350 per month, includes water, electricity & sewer.”

This might be something to keep my eyes out for. Or as Theresa and Lynn suggested, I could post my own note. Theresa sent me this note.
At this point I don’t have any idea what I will be doing. Hopefully, it will be back off-the-grid.

I don’t know what kind of mindset I’ll be developing. The necrotizing fasciitis bacteria is all around so it makes no sense to stop what I’ve been doing for the last ten years. I might try, however, to stay within an hour of a hospital. And if it happens again, I can help the doctors with the diagnosis.

I’ve not been the best person, or close to one, for a good deal of my life. After the bone marrow transplant, I felt I was developing into a better person. My chance of surviving the BMT was only 29%. If I started to regress, I had a friend who merely said, ‘That’s not why you are here’. It was exactly what I needed; worked every time. After I get past this little setback, I have a feeling I’ll work towards developing into an even better person. Granted, it will be nowhere near perfect, but I know some areas where I can improve.

I know I could go through this again, but I feel I have made enough atonement for past mistakes. If I have a third major medical problem, chances are good I’d throw in the towel. So maybe I should start checking out national forests in states I’m not all that familiar with. Or get serious about looking for some acreage either north or south to spend half the year, or something like Lynn’s idea. If I had a lady, I’d see if she would be up for traveling through the western Canadian provinces. As you can see, I have not a clue what to do. So I wonder what next summer will bring. I think having a home-base for a few months might feel good. I could focus on getting my strength back and practice being a better person. We’ll see.

This is an old one so you might of heard it before.
The Old Farmer: A Department of Highways employee stopped at a farm and talked with the old farmer. He told the farmer, 'I need to inspect your farm for a possible new road.' The old farmer said, 'OK, but don't go in that field.' The Highways employee said, 'I have the authority of the State of Minnesota to go where I want. See this card? I am allowed to go wherever I wish on farm land.' So the old farmer went about his chores. Later, he heard loud screams and saw the Department of Highways employee running for the fence and close behind was the farmer's prize bull. The bull was madder than a nest full of hornets and the bull was gaining on the employee at every step. The old farmer called out, 'Show him your card, smartass!!'

It’s never too late, in fiction or in life, to revise.

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’

Wednesday, September 14, 2016

here’s a little story

A camper was up on the Kaibab plateau in northern Arizona. The last day in July, a Sunday, he got up, feeling good, and started the day off with an early morning one-hour run along the AZ Trail. In the afternoon, he felt a pain across the top of his chest, moving towards his right shoulder. The camper didn’t want to, but thought it best to drive down to the emergency room in Kanab, UT; the pain was increasing. It took an hour and he barely made it. He must have looked pretty bad when he shuffled through the doors because two staff workers got up and met him half way. So far, really no big thing.

The camper’s upper right arm started turning red during the last 20 minutes or so of the drive. The doctor diagnosed shingles. The camper said the redness was NOT what brought him in here. Then the upper arm started discoloring as we sat there watching. The doctor admitted the camper overnight for strep throat (positive for strep A), shingles, and dehydration. The next morning, cellulitis was added to the diagnosis. Wrong again.

I must have passed out while sitting on the edge of the bed because I woke up in SLC the next afternoon at IHC's Shock and Trauma ICU. I spent the next two weeks there, having three surgeries. My right biceps, right pectoral muscles, and half of my right deltoid muscles were cut out. A plastic surgeon looked on to get an idea of what he will be working with down the line. They kept me under until Thursday. Are you guessing it was NOT shingles, let alone strep throat?

Necrotizing fasciitis (neck-ro-tie-zing fas-e-i-tis) is a nasty, nasty bacteria that spreads rapidly once it enters the body. It infects flat layers of a membrane known as the fascia, which are connective bands of tissue that surround muscles, nerves, fat, and blood vessels. The infection also damages the tissues next to the fascia.
The most common way of getting necrotizing fasciitis is when the bacteria enters the body through a break in the skin, like a cut, scrape, burn, insect bite, or puncture wound. I don’t remember or saw sign of any break in my skin.

The media refers to it as a flesh-eating bacteria, although it does not “eat” the tissue.
It comes from the Greek word ‘nekros,’ wait for it, ‘corpse.’ Hmm.

I SO wish they had made a proper diagnosis down in the Kanab Hospital. If I got flown up to SLC Sunday night, the surgeons would not have had to cut out nearly as much muscle. I wasn’t flown up until Monday afternoon. All that time the bacteria continued to poison my body. Guano! With necrotizing fasciitis, seconds is tissue.

The hospital needed a medical power of attorney. I don’t have family to call on and it is not something one can ask of a friend or acquaintance. Just think of how you would feel if you were asked to act as such. I mean, it can be a life or death decision. With all the mega meds I was on in ICU I don’t see how I managed to suggest a friend. The hospital called Lisa and she agreed to act as my medical power of attorney but she needed to talk with me first. So right there with that decision to help me, she saved my life. I certainly was in no condition to make decisions. The surgeons were concerned about the lose of my right arm, and possibly the left, so I said to Lisa, if they have to take an arm, keep me above ground; if it was going to be both arms, put me down.

I think it was a week or so later when I was talking to Lisa and told her I just can’t take any more of this. I want to be put down. A resident told Lisa and Theresa that I clearly did not do narcotics because the meds had me so out of it. I was having horrific nightmares; it was as if they were my life. One night I thought my nurse was trying to kill me and I was trying to do all I could to escape from the bed. I pulled the feeding tube out of my nose so the nurse had to strap my good arm to the bed rail. Anyway, it was like nothing I’ve ever imagined happening to me. Lisa talked me into hanging on a little longer but I truly could not imagine how I could. Over the next couple weeks it got better in many ways.

How many can say they saved a friend’s life? And not once, but twice.

So, the Nash, the Dodge, and M&M. Glen and David, two other friends from Moab, had to figure out where the Dodge was parked and how to find the Nash where it was set up out in the woods.

I think it was a PA at the Shock and Trauma ICU mentioned that I had been flight lifted from Kanab. Lisa called the Kanab hospital and when she identified herself as my medical POA, the receptionist felt free to talk about me and mentioned that there was a blue Dodge pickup in the lot. The keys, however, were in my pocket, at the trauma ICU up in Salt Lake. Lisa’s mum lives in SL and through Lisa’s POA, was able to acquire the keys and mail them down to Moab.
If you are not interested in this story, feel free to skip it. I might get back to some semblance of simple living and travel in four months or so.

It was Thursday before Glen and David had the keys and could start driving down to Kaibab (I had told them that M&M had enough food and water for a few days). One day, I was apparently coherent enough to give directions on how to find the Nash. Are you believing all this? Glen apparently got enough info from me and along with a national forest map, Glen and David found the Nash. M&M were out of water. I really did not expect to be away this long. They hooked up, spent the night in Bluff and made it back to Moab on Friday.
They just made it along a length highway after coming down off the Kaibab, just before it was closed off due to flooding:
washed out highway

Lisa saved my life, but Glen and David saved the lives of Meadow and Mesa. Ya done good, guys.

The Nash is setup on Glen and Lisa’s proporty. M&M stay inside and are not happy. But then, I’m not presently happy with my present living arrangement either.

Glen even set up a window A/C for them. How cool is that?

After two weeks in the shock and trauma ICU, I needed to be moved to a hospital that focused on wound care and physical therapy. Lisa chose Promise Hospital after researching their programs, here in Salt Lake. I have both a physical and occupational therapy session each weekday. My OT is particularly awesome and my physical therapists push me as much as they think I can take. What a fabulous team. I’ll miss them. All the sessions max me out but I always try to do the best I can and have been adding some additional work on my own back in my room. Remember Janet and her hip replacement? How hard she worked during her rehab and pretty much got back all her movement? Most don’t put in the effort and don’t get much back. Duh. Just listen to people talk about their rehab experiences to pick up on this. I had to work with a speech therapist the first week I was at Promise to strengthen my tongue and learn how to swallow again. It was a big day when he said I could have some crushed ice (still couldn’t have water).
The physical and occupational therapy team surprised me with a beautiful card and a pair of high-top Converse All Stars on my discharge date. I know, it’s not a guy thing, but I definitely choked up.

I lost nearly 20 pounds, down to 142. I was reading through my medical records and noticed on the admitted ones, I was marked down as having “severe malnutrition.“ It had only been 10 days!
When Theresa saw the wound dressing, she said it reminded her of the Jean-Luc Picard character after he go captured by the Borg. I got a good chuckle out of that.

Twice a week, wound care works on my wound for over an hour. After the dressing is taken off they work on cleaning, debridement of any remaining dead tissue and whatnot. A big issue is getting the tissue to granulate. It needs to do this before some of my skin can be grafted onto it.
This is a photo of the wound from August 11. It’s covered with integra, a silicon sheet, hence the shininess.

This is what an arm looks like when the biceps have been cut out. Unfortunately, the arm is mine.


A photo of the wound 30 days after the surgeries. Progress.

This is a photo from September 13. You can see how well the wound is healing.

Putting a new negative pressure dressing on takes around 30 minutes with a nurse working on each side of the bed. First a layer of thin white foam is placed on the wound where it has granulated. 3/8” black foam is placed over the areas that still need to granulate. The tissue grows up into the black foam, forming the granulation. All the foam is cut and fitted, like a puzzle. There is a channel left where a perforated irrigation tube is laid. It’s all covered over with draping (clear plastic sheets), again cut and fitted to the shape of the wound.
The first time I was aware of a dressing change they had to give me 300 micrograms of pain meds and it still hurt! Then it was 200, then 100, and lately only 50 mcg of pain meds and it hurts a lot less. I asked about it and was told, the first time there were exposed nerves. This is all SO much fun.
I have total confidence the highly-skilled wound care team at Promise Hospital. They take the time to explain anything I ask them about. And they are entertaining! I always get laughs while my wound is being worked on and I am glad say that I can make them laugh almost as much. It might seem strange, but after the first two dressing changes, I always looked forward to wound care.

One time, two hospital directors stopped in the see how the wound was progressing. I was thinking my wound must be different to warrant such visitors but hopefully not too complicated.
For that first dressing change there were five staff members clustered around my bed. Lately there are two. I asked about that and was told everyone wanted to see the wound. I got another good chuckle out of that. I’ve chuckled a lot since I’ve been here. A good deal of the staff have a sense of humor so I can joke around with them.

They were not used on my wound but maggots are used here and are pretty effective on some types of wounds. The wound team builds a coral around the patient’s wound, pour in a slew of tiny maggots, and cover them over with a breathable material. The maggots feed only on dead tissue for three or four days, growing the whole time, and then removed. I wonder if you feel them at night when you are sleeping.

Five times a week for 110 minutes, I go upstairs and slide into a hyperbaric oxygen chamber. Maybe, "Once more into the breech" has another meaning. I thought the chambers were just for scuba divers with the bends but they also promote healing. I get to watch a movie each day but have only managed to see the ending of one. Oh well.
The sessions generally go okay, but it can be warm and a tad stuffy. One day however, I was lying there on my back and upchucked. It was all out in half a minute and I asked them to keep me in the chamber but they would not hear of it. They started the decompression. It was nearly an hour into my time and the whole day was wasted. Guano.

Night nurses. When I was in a hospital bed up at the U for six weeks, I rarely was aware of the night nurse coming into my room, totally stealth mode. The patient rarely sees the good ones. They quietly come into the room and use light from the hall, machine faces or a penlight to see. They know that turning on a light will wake the patient, common sense. They don’t talk and if they need to, it’s with a very low voice. Coming into a room with a sleeping patient and using a daytime level voice is going to jar the sh*t out to the patient. Common sense. I might be using faulty logic with this one, but if a person hears speaking while sleeping or on the verge of sleep, it will be processed, setting off tiny electric charges in the brain, further waking up the patient. I have problems with sleeping at night (and no, I don’t take naps during the day). Two nights I had this woman who automatically turned on an overhead light as she came through the door, every time she came in, no matter what time of the night. That alone woke me up each time. She never stopped to access the available light to see if it was enough (it was). She talked every time, with nothing that needed to be said, and NOT in a quiet voice. The first morning, I finally got into a good deep sleep, lying on my back, and still out cold at 6:00 when this creature came in and turned on the bright light directly over the bed. I started grousing but she kept it on until she was finished with what she had to do. Not a thought, of the patient. There’s a word for that kind of woman, rhymes with witch. Sleep has strong healing qualities and for a trained medical professional to needlessly hinder a patient’s healing, is SO not right. And yes, I voiced my thoughts, (some of my friends probably just cringed) but to no effect.
There are many stellar nurses and CNAs here but then there are some I wonder how they got a job, let alone maintain it. I found out I was scheduled to have this woman a third night but the desk switched nurses for me. I knew there were gods.

I called my friend, Pinball (I first met Lynn when she moved to Bisbee from NY, then she moved to Tucson, then Ohio, and recently, back to Arizona). She gave me a laugh after I told her about my present situation. She responded with something like, you’ve been independent and off by yourself for the last ten years. You hike and run trails in areas where there are cougars and bears, camp and climb where there are rattlesnakes, hike in ravines, and take falls from time to time. Come on, you’ve been playing roulette all these years; something was bound to happen. True, and I took one particularly bad fall earlier this summer, after which it took me quite a while to make it back to camp. And the following week, all I could do was hobble. Might be time for a change. Then again, I might not have a choice.

Remember when I wrote about my bone marrow transplant back on the July 2011 page? What a cakewalk compared to this. All in all, it’s been a good experience at Promise. I memorized the names of all the staff who took care of me, always addressed them by name, and tried to pay them back with daily thanks and laughter.

That’s probably enough for this month’s page. Next month I’ll probably continue the story. There is still another hospital for the skin graft, the healing process, time in an acute therapy facility, and getting back in the Nash. I SO miss Meadow and Mesa. And Pinball emailed me with a suggestion for an alternative life when I get out. We’ll see.

The IRS returned a tax return to a man in New York City after he apparently answered one of the questions incorrectly.
In response to the question, "Do you have anyone dependent on you?" the man wrote:
"7.1 million illegal immigrants, 1.1 million crack-heads, 4.4 million unemployable scroungers, 80,000 criminals in more than 85 prisons, plus 450 idiots in Congress, and a group that calls themselves politicians."
The IRS stated that the response he gave was unacceptable.
The man's response back to the IRS was, "Who did I leave out?"

If you are on thin ice,
you might as well be dancing.
Lincoln Child

RVwest article ‘Following a Free Spirit’

RVwest article ‘The Spaces Between the Places’