This sunset was New Years Eve (12/31/12) -
Happy New Year
||01/12/13 - Busy
start to what is shaping up to be a busy year. Those of you who know me
know my fondness to 13 and I'm hoping for big things in this 13 year.
It has taken awhile for me to find an hour to sit down and get the site
updated, business is growing :)) but still struggling as all growing
things do. But we have found time for a dinner on the river
at our favorite table with a view
and we did manage to get out for a little bike ride into town. There
a pier, a favorite fishing spot for those who enjoy fishing, right as
you come into town an we stopped there to watch
the river for a few. Our local hawk, he hasn't figured out he's a
hawk yet as he's still hunting lizards and other very small critters,
puts on a show almost daily for us and posed for this shot
the other day as I was walking back up to the house from the boat. I've
been trying to find time to get back to work on the boat, but finally
gave up and called the mechanic to get the oil changed, new impellers
(the goodies that bring in the outside water to cool the engines and
generator) installed and a general tune up done. We also have had to
run down to Melbourne again to get my eye done (laser to remove the
layer my eye decided to add to the new lens after my cataract surgery
and for a little more carving by the skin Dr. Sheila is up and down
these days. Started on some new meds, the kind they warned us about
when we were going through the qualifying process. Jan. 12th we moved
into the donut hole and it looks like we'll be out the other side of it
by March 15th so we're getting that expense out of the way early this
year. Now we just have to see if these new killer drugs kill the right
things and leave the others alone. Ah well, it is what it is - and
we're both still smiling.
|01/13/13 - Dinner Out Again
||So we went out for dinner
again and it was a sunset worth of note - but what else would you
get on the 13th :)))
You'll want to click on these as they're worth seeing full screen.
This was one of those special nights when everyone came out on deck to marvel....the beauty was humbling.
|01/27/2013 Mayo Clinic
is back at the Mayo. She has been having a hard time for the past
couple of weeks since they put her on a new antibiotic. This was one of
those $1700 medications, and we were in the donut hole already the the
other $700 (our copay , any way, the expensive on Colistin, I'm not
spelling it right I'll get the real name when I get home, didn't seem
to agree with her. Eventually that brought her down too much so we took
her in first thing in the morning. X-Rays, blood test, etc. and they
put her on the bipap machine (that's the mast she's wearing) and we had
a discussion about a ventilator if that didn't work. Since that's an
option we'd rather postpone she got to work at figuring out how to make
the bipap work and got in down after a few tries - the problem was she
was retaining too much carbon dioxide. The test for that is an
'arterial blood gas' test, where the stick a needle in your wrist and
hunt around for the artery so they can get a blood sample from it
(ouch). So one the third try she'd mastered the machine and her levels
were coming down, Dr's happy, we're happy :))
She's up in a room now. They've started her on the heavy duty steroids and some IV antibiotics and she's starting to feel better. I'm sure there will probably be more test tomorrow to see if they can find out for sure what is going on with her. For now she's out of the woods and feeling better. I'll update this tomorrow (actually later today I'm staying at the hospital and it's early morning now. Interesting night, it's amazing that anyone gets any sleep around here lol Life's Good - Keep Smiling
|01/30-2013 Still at the Mayo,
but much better
||Sorry for the delay getting this
up for those who've been following what's happening, it has just been a
very hectic week between tax time, support issues, getting the new
E-File functionality into the program &tc..... But the important
news is that Sheila is on the mend, we've I think identified the
problem or at least part of it as retention - because her lungs have
grown larger and the way all this works she is retaining a lot of CO2
which of course has a negative effect on her whole system, basically
poisoning it even though when we check her oxygen level it's fine. It's
a whole new thing to consider and no practical way to measure it or
keep any eye on it at home. You have to do a 'blood gases' test which
involves drawing blood from an artery and then do a lab test on it. But
we have a way to treat it, she is getting a BIPAP machine - one of
machines that pushes the air in with pressure which stirs the stale air
around moving it up and out as she exhales. She'll be wearing that at
night from here on out and an use it occasionally during the day if
she needs to. The physical therapy guy has also shown her a couple new
ways to help clear her lungs during the day - so between all this we're
looking at getting her back on her feet :)) Hopeful for a Friday
discharge right now, but still on wait and see for that.
So Sheila's on the mend, we're both a little tired, they have a very early schedule here and of course she's still trying to get used to that BiPAP thing along with people coming by every couple hours with some med, check or some other reason to wake you up as soon as you fall asleep - life in the fast lane lol :)) Ya All take care and keep smiling.
|01/31/13 - Up and down :-)
busy day of testing - CT Scan, Echo Cardiogram, Laps, etc. The good
news is they didn't find any serious new issues to point to what
happened - the bad news is they didn't find any new issues to point to
what caused this. So that leaves us with the Colistin (Colistimethate
sodium to be precise) and possibly an allergic reaction to it and just
the progression of her disease.
The 30th it was - we're going to take you off the BiPap, then she had another minor episode (severe shortness of breath) that night and they put her on the BiPap and that helped. So 31st, along with all the tests a really nice man from Barnes (a medical supply place) came out and brought us a new BiPap machine, set it up for us and showed us how to use it. We put that on her last night and she slept with it. The mask for it is a lot more comfortable than the one on the machine here at the hospital and the machine is very quiet. She's up and walking - out for 3 walks yesterday, so she's continuing to get her strength back. The testing was a mixed bag. The good news from this exacerbation is that it will raise her score on the transplant list - the bad new is that with every exacerbation she loses a little in functionality. The new machine will help with retaining CO2 and we're going to work on slowing down - still do, just do a little slower. We've read some stuff on mindfulness - really getting in to what you're doing and slowing down - that's our next step, slow down,& take it one step at a time. Its 2/1 now, last we heard was "let's see how you do on the new machine", so maybe a week-end discharge. We're both ready to go home and have some home cooking :))
|02/01/13 - Happy Dance :)))
was a quiet day here. No more testing, just the normal routine and
waiting for the Doc to come by and let us know what was going on from
their point of view. Physical Therapy came by and took her for a walk
mid morning and then after lunch I took her out for a second tour of
the hallways. As fate would have it todays on call Dr was making rounds
at the same time we were out and about and smiled giving her an
The afternoon wore on, I worked, Sheila read which is our normal routine during the day and then around 5 the Doc finally got to us. He commented on her looking pretty good out for her walk and asked how she felt and eventually we got to the question of the day - "So you feel you're ready to go home?", quick glance, big smile and a big YES. So tomorrow we will be heading home if everyone gets their paperwork in order and all the i's get dotted and the it's get crossed.
This new machine I think is also going to be a big help. Starting the day out with her lungs flushed out well and ready to take on the world will be a big boon and if she needs a rest during the day, she can use it as often as she feels the need. Hopefully a good day is coming (as in one of those 70's) so we can take the boat out. We just had it serviced, I gave up on getting to it myself, and it's ready for a run up the river. We need to take it up to the marina and get the tanks topped of and I think we're both itching to do something fun :)) Till next time - remember life's to short to waste, find the thing that makes you smile and just keep doing it.
|02/08/13 Dinner Out
||We've been home a week and
Sheila's been getting a little better each day we're home. Yesterday
she was up to some real cooking again (yummy :)) and so tonight we took
the leftovers over to the boat and had dinner on the river again. I
think we enjoy just sitting on the river and watching the sunset as
much as we would going for a ride.
Little bummer from this episode, that $1700 medication that she was on for a week is what we think may have made matters worse. They have her listed as allergic to Colistin now and we still have 22 days worth of medicine and of course you can't return unused medicine. We're looking for someone local who is on it and having trouble paying the bills to pass it on to.
Overall, life is good, it's real good to be home again. Sheila has a new Bipap machine that she sleeps with every night. The thing is so quiet that I have to listen closely to be sure it's running. It has this quiet little beep-beep type alarm if it's not happy and you'd think it would never wake anyone, but it went of the other night and woke me right up. Her mask had slipped a little and wasn't sealed any more. A minor adjustment and we were right back asleep. Wish it had an oxygen monitor as well but it doesn't have that feature. We're smiling more these days and appreciating every day a little more than the day before - Ya all take care and remember It is what it is - might as well make the best of it and keep smiling :))
|02/10/13 Dinner Out again
||Seems like we're catching me
smiling a lot more than usual these days - but then what's not to smile
about, good weather, good food, good company and a great view :))
Things are continuing along, not much new to report. We did make
arrangements with the coordinator for the Mayo lung transplant support
group to pick up the Colistin when we go up on the 26th for Sheila's
check up, so that is taken care of. They'll pass it on to someone in
the group who may need it.
Business is keeping me busy and we're working on a new home page for the web site which we hope will be a little more informative on the new online version of our program. It's still growing slowly but surely, we just need to give it a kick in the butt and get it moving. Our 1 year, $100k program is now at 3 years+ and the budget has also passed the 3x mark - time for this thing go get to work and start earning it's keep. We all need to pull our share of the load around here.
On the home front I've started a new book/new person, Alan Watts and I'm really enjoying him. Right now I'm listening to You're It, and really finding it interesting. Basic premise - you can't have a front without a back, they are mutually inclusive, so they both come into being at the same time. We live in a universe of 'duality' - that is you can't have a front without a back, you can't have left without right, etc. and it's the etc where it gets really interesting. Think about it :))
Sheila and & are having a ball, life is good and we're squeezing all the juice it's got to offer out of it. Till next time Be Happy!
|02/22/13 Cruising the River
||We have a Mayo coming up next
week, and have company coming to visit the week after, Suns a shining,
and the river is beckoning. We need to fuel up in case our company
wants to go for a cruise (I think that's already in the plan). So
Sheila took the helm, I manned the lines and we got her cast off and
headed up the river to Georgetown Marina to fill up the tanks and empty
the banks. Judging from the smile, I think she's enjoying the Captains
duties :)) Sheila hung on to the helm for about a half hour or so
and then I took over so she could sightsee. The wind was blowing out of
the south pretty good and we had fun getting tied up at the dock, but
the girl at the marina was great and we eventually got the boat
secured. Then to the task at hand - the trusty (not so much) fuel gauge
had not moved for quite awhile, but according to our secondary monitor
we needed around 100 gallons - when we finished up it was 126 actually
- really did break the bank and gas on the river is about a dollar a
gallon more than it is ashore (some riverside surcharge the state
imposes according to what I was told). But that's one of those, 'is
what it is' things - so into the store to pay the bill and I returned
with 2 ice cream sandwiches :)))) - Ask Sheila about the trip and her
comment - "I got ice cream!" - I think that sums it up.
What can possibly top that - life is great when you're munching on an ice cream sandwich and cruising down the river. Trip back was uneventful except for wandering out of the channel and brushing the bottom - but just a little brush, so not harm done. Just a reminder to pay attention. Till next time be safe and be happy.
|02/26/13 - Mayo Visit
||I'll have to say I like 'visit'
a lot better than 'ER'. This was the scheduled quarterly visit and we
ended up with 2 days this time (someone dropped the ball in
scheduling). Sheila was scheduled for a CT and an Echo Cardiogram, but
then they did both of those while she was in the hospital, so they
canceled these - but they didn't cancel them until we were sitting
there waiting to get them done. So 1st day was pulmonary - the
breathing tests, 6 minute walk, etc. and Sheila came out really well.
We think the new machine is helping there and it's been helping her to
feel a little better during the day.
Day 2 it was AIC for a blood letting, I thought that girl was never going to stop filling vials, and then on to chat with the Dr. All's well for the moment and she's back to holding her own. They're going to get her off all the antibiotics for a little bit and see how it goes. You can't stay on the antibiotic for too long or the bugs start building an immunity to them and they'll lose their effectiveness. So we're crossing out fingers and hoping nothing takes up residence again.
I did have a shot from earlier this month I also wanted to fit in somewhere, so since it's hearing to March, I'll squeeze it in now. Here's a shot from my morning walk. Don't see these guys every day, but it's always a pleasure when I do. Still listening to You're it, but nearing the end. Going to get a copy of 'Do You Do It or Does It Do You, another Alan Watts book next. Till next time keep smiling and remember - Fly's can't bird, but birds can fly :))
|03/01/13 Dingy Day
||March 1st - and the cold is
coming tomorrow and staying for a few days, so I wanted to get the
dingy back on the boat. We got the motor services, I cleaned him all
up, got a new gas tank, etc. so it's time to float this thing and find
out if the motor works and the dingy floats. So we start on the hard -
picture to the left, then we pull the trailer over to the water, float
the dingy, pull the cord, pull the cord, take a break, pull the cord,
ok finger raw, go get gloves, pull the cord - a splutter :)), pull some
more and finally a sputter, a cough and zaroom, she's running. I putt
very slowly out of the cove and play in the river for a few minutes and
then head for Change Is. I make it to the swim platform on my second
try, get him tied up and start on the hookup and cover process. This is
a bit of a chore, especially the first time around, new cover, who new
idea for how to make this work - but in the end all is well that ends
well - so here's the other end back on the davits and grinning from
ear to ear.
Are You Doing It or Is It Doing You - I'm really enjoying and coming more and more to understand that it really doesn't matter. It still is what it is regardless of how you 'see' that answer - and 'see' as in 'I think...." is about all you can do for in the end there really isn't a way to know the answer to that question - it's a 'dual' universe made up of mutually inclusive dualities. So which cam first the chicken or the egg.
Take care all - be happy, that's the secret, just be happiness.
|03/05/13 Boat Ride
||We don't have company often, so
getting shots of Sheila & I together on the boat is rare, but this
week we had Lucinda, Sheila's best friend, and Sal, an old friend from
New Jersey both down for a visit and of course we all voted for a boat
ride, so the main shot for the day is one of Sheila & I together on
the bridge getting ready to get underway.
As usual Sheila took us out and just for something different we decided to head downstream (North). We haven't been down river at all (this is very confusing - North is up, but river flows North, so on the river you're going down stream. So up is down or is it down is up - it's sooooo confusing :)). At any rate we headed North and got some new sights along the way - Sheila & Lucinda hung out mostly on the bridge and you can also see Sal back on the poop deck. Sal was enjoying the ride from astern, and since he couldn't swim we appointed him the guardian of the life jackets (which are stored on the poop deck.
We did pass a couple of interesting sights along the way - this Clock Tower, dock/boat house was the most interesting of the many docks that dotted the east side of the river. The west side is all state forest I believe - it's all protected and uninhabited at any rate. We continued downstream to the Railroad Bridge and then put about and returned. It's about an hour, moving at our customary 6 knots, to the bridge and we had planned on a couple hours on the river. It was a great afternoon, and a great week. It was fun having the folks we usually visit on our travels stop by for a visit.