Sunday, May 22, 2016

All good things...

I think the greatest loss of living with Dysautonomia has to be how difficult it is to concentrate and remain cognitively engaged.  Translate that:  writing has become so terribly challenging.  Uphill.  Blindfolded.  One hand tied behind my back.

My friend Mary and her beloved came for his graduation.  A most lovely visit, for me.  Although their schedule was incredibly packed, they carved out some special Myrtle Time.  And they indulged me in a late night snack even though both were so weary it was hard to stay awake.  Sweet folk.

We went to a restaurant on Friday, so that I could have a normal outing.  Chili's.  On Friday, I hit such a wall with the arthritis pain.  I mean, I had started back on Celebrex/Celecoxib, but it was not yet built up in my body.  Sitting in the restaurant, I was not sure I could stay there.  But chatterbox here distracted herself.

There was a furniture store next to Chili's, so I forced myself to look at couches.

I found this combination that I like ever so much more than my first set.  Whilst it is not GREEN, I like the look of it.  I didn't think I would like attached back cushions, but I do.  And I really like the look  of the skirt.  The set is much more money, though.  It would take the remaining funds I've raised through selling stuff and leave nothing toward a mattress.

The cushions are exceedingly comfortable. Nice and thick.  Warrantied for five years, too.  What surprised me is that the love seat is a sleeper!  I could still have a bed on the first floor!  Sitting on it, I would never have guessed that it was a sleeper.

The sales man who was helping/pushing me to buy said he could work on price if I found something I wanted.  I asked him for that "helped price" and he gave me two numbers, one if I didn't get the sleeper version of the love seat.  So, I asked him to write down the name of the style and those prices.  He then passed me off to someone else who told me that I had to pay the "sticker" price.  I felt like I was in a used car lot.  I felt small.  And frustrated.  SIGH.

I was so upset that the salesmen working the tent sale in the parking lot noticed.  The short story is that someone called the manager, who talked with me, and I have an offer to go back after Mother arrives and work directly with the manager.

I looked up the manufacturer online and found two other stores that carry the line.  I was thinking that if the Kenneth collection is sold at another store, I might find better treatment.  I could have explained a lot more, but both salesmen kept making derogatory remarks ... about females.  So discouraging ... except that I REALLY like the sofa set.

Mary had asked for me to teach her how I make tortillas and how to make the salted whisky caramels.  Mary is an ace as rolling out tortillas and rocked her first set of caramels.  I was duly impressed and I was reminded what a novice cook I still am.

When we had pulled pork tacos (my wish), on Thursday night, both Mary and Ned helped make dinner.  I LOVED cooking with them, working all together on a meal.  It made LOSING at Rumikub more palatable.  Ned smoked us both, winning all the games but one.  And Mary won that one.  SIGH.

I was on my feet doing ever so much more than I should, not because they both were not helpful, but because I kept trying to move because of the arthritis pain.  Of course, that meant that I mostly slept yesterday (other than laundry and dishes to get ready for my mother's visit on Monday).  And today I have done nothing more than hold Amos and still savor Mary's visit.

They moved all the culled books to my car (or theirs) so I could get them to the donation center.  And they stripped their bed and took the bedding and toweling down to the laundry room for me.  Basically, they were kind and gracious and gentle and quiet and convivial and helpful and accepting.    It was such a peaceful, blissful visit!

The other boon during their visit was the treasure discovered in my walls!

Okay, maybe others wouldn't consider wiring treasure, but I do!  When Electrician Man started working on installing a fixture in the living room ceiling, he discovered wiring up there!  Someone had drywalled over the lathe and plaster ceiling, so there was a bit more cutting involved as he got started.  Then, once the hole was open, he found a block of wood in the way.

Before cutting it, we talked through which wall to use ... to cut into ... so that we could work wires up from the basement.  The joists run from the front of the house to the back (something we learned once the hole was open).  That meant either going up the side of the pocket French doors or going up the side of the picture window.  Either way meant then moving back toward the center of the room by cutting holes in the ceiling to drill through joists.  Finding wiring was like finding GOLD!

Eventually, we (meaning it was my idea where we looked), we found that the wiring for the switch was still in place, too, just also drywalled over (by some idiot).  So, Ben carefully cut out the box, installed a switch, and put on a plate.  In the ceiling, he put in a workbox and hung the fan I have from my last house.

The fan is wobbling some and no amount of balancing was helpful.  Sadly, I think I will need a new fan. But, for now, I can use the upper and lower lights and I can use the fan on low.  Even on low a lot of air was being moved.  I am soooooooo excited to finally have ceiling fixture in the living room.

It just BOGGLES MY MIND that anyone would ever think removing the sole source of lighting in a living room was "home improvement"!

Anyway, notice those lengthened pull chains?  Mary's husband Ned cut and put up extensions for me!  So kind!

Basically, I have been rather giddy since Thursday, despite pain that had me rather despairing on Friday.  I don't have to repair all of those projected holes (pay someone to do so).  I don't have to deal with the clean-up of said repair.  I don't have to deal with having a strange workman in my home for said repair.  All good things.

All good things topped with a most lovely visit with Mary and Ned.

Saturday, May 14, 2016

On the mend...

Did you know that if you want to drill through the bottom of a ceramic pot you should use a diamond bit?  And did you know that if you use a diamond bit it is best to do so with water running across what you are drilling?  And, if you drill using a diamond bit, did you know that it is best to start with the bit at an angle and then rotate it flush as you push down so that the bit can bite into the ceramic?  I didn't.  At least, I didn't know all that until I did quite a bit of Googling and You-Tube watching.  Still, it took months and months of loin girding before I tried.

It is cold again.  Colder weather still is on slate for the next few days, with the overnight lows in the 30s.  I had some cucumber plants in a pot that did not have drainage.  I think, maybe, that is why the rosemary bush died in the solarium this winter.  I think the soil never dried out or something.  I actually did not know the pots (I have two) did not have drainage until the deluge of water we've been having.  The cucumber pot filled up and began to look like a rice paddy.  I figured the plants wouldn't make it through this cold snap so water-logged.  So, I finally girded my loins enough to try the bit.

I was soooooooo happy that it worked!  Four times over!

I personally think drilling with a diamond bit is a two person job.  However, I am only one person!  So, I put the pot upside down on the grass, so as to minimize the vibrations of the drilling, put a foot on either side to hold it in place, used my left hand to hold the hose sprayer, and drilled with my right hand.  A miracle, really, that I didn't drill some part of me.

You know how with most things going with your first choice is best (as in standardized testing)?  Well, this time, I think my second choice was best.  When I flipped the pot, I found this grove about a half inch inside the bottom rim.  I thought it might be best to drill there, so I swapped sizes of the bit (my kit came with four sizes of bits) at the very last moment.  As in ... there I was, drill running and poised over the pot when I set down the drill and hose and swapped bits.

I am mightily pleased with myself.  I learned a new skill!  And I have a lovely, large old pot to try and grow some cucumbers.  My thought is that the vines can twine along the chain link fence once they are long enough ... if they survive living in a paddy and then being zapped by cold weather.

I think, if I am a good grower, I should cover up the raised bed and that pot.  That means I need to dig out some linens to do so.  Gosh, it's 41 degrees right now!  I think I need to go out and bring in the Wandering Jew hanging baskets.  Oh, my, what wild, wild weather!

Amos, my beloved and beleaguered puppy dog, is doing better.  I wept with joy when I realized his fever had broken in the early hours of the morning.  He's still a bit warm, but he is no longer radiating such high heat that I am beside myself with worry.  Four doses in on his 7-day course of antibiotics and on his last day of benedryl.

His tail looks better, but still much more awful than his most beautiful scab on the hot spot.  Technically, his tail is a hot spot, too.   Every once in a while, Amos will whip his head around and make a beeline to his tail.  Like something is shocking him.  It's been that way since the beginning.  But he is getting better at obeying at me when I holler at him to "STOP!"  Poor Pupper (Electrican Man's nickname for Amos).

This is another thing I am working on being over.  I was soooooooo worried when Amos' fever persisted.  His gums were sticky and drying, which is a sign of dehydration.  Since he is a dog, I couldn't just keep handing glasses of water for him to drink.  Nor could I explain why I was worried.  My, am I ever so grateful he's on the mend.

Truly grateful.

Friday, May 13, 2016


After first aborted attempt, the buyer came for the couch today!  I am thrilled to have sold it so as to have money to replace it, but I am also ... discombobulated having no couch in my living room.  There is all this ... emptiness!

One of my lifelong dreams was to have a house with a true library. I long for wall-to-wall bookcases that run from the floor to the ceiling and have a ladder on a brass pole to access the upper shelves. BLISS. But I do have my dream home that is wonderful in so very many ways, even if it doesn't have a library.

In preparation for eventually having a couch again, tonight I downsized the books on the bottom shelf of the bookcase by the end of the couch space.  This way, I was able to take the contents of a basket I kept on the floor by the couch and put them on the lowest shelf. That means I will have more visual rest once I actually have a couch again.  And I will still have access to the medical helps that are becoming more and more a part of my life now.

The books I culled are ones, were I blessed with that library, I would NEVER let go.  However, I do not have that library and I have medical stuff and I want visual rest.  That means downsizing to make room.  Part of the culled stack are two books on Narnia, one for younger kids and one for older youth. I also included a comprehensive book on Lewis Carroll. And one on the history of illustration in Children's Literature.

The bookcase is really this for me thing that I did. A while ago, I pulled off all the books I thought had to be there to show I was a Lutheran/had faith and reorganized the bookshelf so that each shelf represents aspects of my life (my three degrees, my time as a missionary, being a professor, writing, etc.). You could say the bottom shelf does, too, now since the basket has heating pads and medical stuff in it.  

Anyway, when I look at it now, I find comfort in it.  It is sort of a memory keeper.  Well, maybe not that, since I do not remember much of what is on the shelves.  Maybe you would call it a reminder to me of what my life has been for the times I am feeling rather useless am fretting since most of what I do day to day is just try to get through until the next one.

I won't admit just what happened to me in the process, but I got the recumbent bike down to the basement to where the treadmill used to stand. And, given Amos' benedryl induced stupor, I took the opportunity to downsize his babies (many of which are from Kasha's life), culling the ones without stuffing and squeakers and the recipient of multiple surgeries. I had been keeping them in the bed he never uses, but I moved them to a basket so that the sight of them is ... less. I am waiting for WWIII to erupt between my Fluffernutter and I. But, truly, it was time.

Because I back-tracked and am taking up Mary and Ned's offer to be helpful whilst they are here, all the books I have culled are sitting on the floor by the bookcases from which I removed them. I am hoping they want some for their brood, but the rest I am going to have them cart to the car for donation so as to save me time, energy, and much fainting. My goal is to cull from the picture book bookshelf upstairs and the young adult bookshelf downstairs before the Moerbes arrive next week.

I am not wanting to cull just to cull.  But I am wanting to create space on all the bookshelves if only to not have them so very crowded.  But also maybe for some other uses.  For example, I have thought about using the top shelf of the picture book bookshelf, whether it remains upstairs or I bring it down to the living room, as a display for quilts (if upstairs) or as a space for my weighted blankets (if downstairs).  

When I think about moving that bookcase downstairs, I like the idea of having the rocking chair near it.  However, I just cannot fathom moving the marble-topped chest of drawers to any place other than the living room.  Of course, that chest of drawers is filled with my DVD collection.  So, logically, it should remain downstairs.  And, as the rocking chair is next to it right now, the lamp on top provides extra reading light and the surface a place to put a drink.  

I suppose I do not really need to decide about that until the couch and love seat arrive ... after I have made a final decision and actually purchase them!  

My beloved Fluffernutter seems a tad bit less warm today.  Actually, he still felt rather warm this morning, but less so this evening.  I am hoping, very much so, that he is turning the proverbial corner.    He has one more day of benedryl (drowsiness) and four more days of antibiotics.  His tail is much better, but not progressing as well as the wound from beneath the mat on his back.  That wound, nicely scabbed, is starting to shrink as it heals.

My worry is less, but remains still.
Having an ill puppy dog is rather horrid!
Poor Amos.

Thursday, May 12, 2016

Not handling it well...

Amos has a fever.
And I am not handling it well.
I need surgery.
And I am not handling it well.

I am really quite nuts at the moment feeling as it if has been years since his fever started and it should be gone.  However, it started on Tuesday and he got his antibiotics on Wednesday, so really he's just some 30 hours into his 7-day course of antibiotics.  And my friend Becky just called me, sensing with her super powers that I was FREAKING OUT, to tell me that she actually thinks fevers are good things since it means the body is fighting off something.

Amos is a blooming furnace.  And the fact that he normally is no help whatsoever whenever I have cold spells, this constant radiating of heat is a constant reminder to me that my Fluffernutter is ill.  I dislike the reminder.

Aside from being less thirsty than usual, and a bit sleepy because of being on benedryl, Amos seems otherwise fine.  Being so worried, I just made him drink water and then pee and poop so that I could assess his bodily functions.  Wearing a Cone of Shame has Amos a bit cowed, so he's a bit more obedient than usual.  I think he thinks that if he is a good puppy dog I will take it off and throw it away.  I do take it off when we are in the GREEN chair together, but when I am away from his side, I slip it back on so he cannot chew on his tail anymore.

I think it looks better than yesterday.

I actually need two surgeries, but really the esophageal dilation is the first and most needful.  The hiatal hernia repair to keep my stomach in place would be later.  Only the dilation is already later because the gastroenterology department is not even taking appointments at the moment.  Maybe in June ... for an August appointment ... then surgery in the fall.  Until then ... or whenever it is ... I have to adjust what and how I eat to try and keep food from getting stuck and to try and take all my pills with food to try and keep them from getting stuck.

This morning, when the waves of violent nausea began to wash over me, I reached for my beloved Zofran.  However, I couldn't get it swallowed.  It got stuck partway down and did not move itself along to help me.  I wept.

It bothers me that the whole swallowing thing has gotten significantly worse since January, progressing from just pills to food and drink.  And it bothers me that I have yet another problem to manage.  As I have written many, many, many times, I am weary of managing.

Right now, I am weary of managing my fears about Amos, a.k.a The Radiator.  My poor little Fluffernutter.

Monday, May 09, 2016

Still feeling guilty...

I called the vet today, because I remain appalled at the wound on Amos' back.  She suggested I give him a bath to really soak the area, then, when dry, to use triple antibiotic cream on the wound since it is not a place he can reach with his tongue.  The oozing is concerning, but since the skin around the wound is clear, the vet believes I can manage the healing without coming in for oral antibiotics.

How did I miss this?

Today, I had the CT scan.  I honestly cannot fathom how scanning my sinuses will help fighting that infection.  The facility was running rather late, which always makes me agitated.  An hour after my appointment time, I was taken back.  I often wonder about folk who completely ignore my cane.  I mean, I was left standing in a place with no chairs without anyone thinking to ask if I needed one.  So, I sat on the floor.  Why others get so bent out of shape with my sitting on the floor is beyond me.  And, I must admit, I have no patience for their upsettedness over my choice.  Why do they think I bloody care if the floor is hygienic when I am trying to keep from fainting?

Since someone had finally fetched a wheelchair and I was sitting in it, the male tech grabbed my arm to help me out of it.  I did not scream or hit him, but I very quickly and very firmly stated, "Please let go of me."  He asked me if my arm was injured in some way and I said no.  He then asked me why I wanted him to let go.  I simply said, "I usually do not have male personnel in medical testing or treatment."

He left the room, for which I was grateful.  He was tall and imposing and really set me off.  However, there were no tears or shaking on my part. I was agitated, but did not melt down.  Baby steps.

I think the largest part of doing better with that was that I felt no shame when I asked him to let go of me and when I answered why.  And I still think that before just grabbing on to folk, no matter where you are, you should do them the common courtesy to ask if he or she would like help.  So, I was very much okay with where I was in that moment.

Tomorrow, the esophageal study is a fasting test.  Why is that when I am told I cannot eat after midnight, I suddenly have to eat after midnight?  I was told I could take my morning meds with a tiny sip of water.  Why would you say something like that to a person coming in for testing because of swallowing difficulties?  I am debating not taking them until afterwards, but part of the morning meds are ones I like to keep fairly strict in remaining on schedule.  Of course, I normally take them at 6:00 AM, so, to me, I think it would be fine if I had more than a sip of water given that the test is not scheduled to even start until 10:00 AM.  Decisions.  Decisions.

I remain concerned about the cost of both tests, but today, in the mail, I received my settlement check for the class action lawsuit against Labcorp.  I find it interesting that the 1,001th class action lawsuit form I filled out actually netted something.  Well, I did once get a check for $0.81, but that doesn't count to me.  This one was for $180.  I was surprised, but then not since I have been using Labcorp for all my blood work since I first started getting ill.  For once, someone got caught for over-billing.

It was a pleasant surprise and a very much welcome one.

After a long talk with my new GP, I asked her to try and transition me off the Celebrex/Celecoxib for my arthritis pain.  Back in the dark ages, I went through nine medications, I believe, looking for an effective pain relief.  I was rather fearful about going through that again.  However, last year the monthly prescription (generic) was $5.  This year,  it is $154.  I just cannot sustain that and have any hope at staying on top of all the other medical expenses.

I am trying meloxicam, not a pure Cox 2 inhibitor, but one that works much in the same way.  Because the Celebrex/Celexocib lingers in me a bit, I will not really know if I can have manageable relief for two weeks.  I will say that, after four days, I am fairly okay.  How much is meloxicam?  $2.  If I can take it long term, using the mail order pharmacy makes it free.

My other two expensive medications do not have alternatives, for me.  But there are several options to wade through regarding arthritis pain.  You know, if you are willing to experiment with your pain levels.  I think I could live with something that takes the edge off the misery if it is in the Tier 1 level of my formulary.

The new GP also suggested that I try ice packs on my infernally eternally itch pacemaker incision scar.  Actually, the skin around it in about a 4-inch radius itches.  So, the other day, I was lying on ice packs for my head, had an ice pack on my chest, and ended up putting ice packs on my face because the flushing was so bad my skin hurt.  I swear, I need to move to Alaska so I could just live in an igloo.  SIGH.

The ice pack does help, though, with the pain and itching.
Will it ever end?

ARGH.  I just burped a bit and my 7:00 meds, partially dissolved, just popped back up in my mouth.  ICK!  I just want my swallowing to work.  SIGH.

And, maybe, I would actually welcome some warmer weather.  I've had eternally blue feet for a while, with some fearsome cold spells.  Without the heater running, my house is between 48-52 degrees!  It's May!!  Just a wee bit warmer, please.

Sunday, May 08, 2016

Horrible, wretched, blue...

I am on Day 59 of antibiotics, Day 18 of the Big Gun one.  Tomorrow is the CT Scan of my head to see how things are progressing.  If you ask me, I would say we are still not finished with the never-ending sinus infection, because I still have blood GREEN gunk coming out of my head.  However, I actually do not have much experience with sinus infections.  The bleeding is ever so much better and the gunk is ever so much less.  I am still incredibly exhausted, however, so the theory that it was from fighting an infection has been pretty debunked in my book.  I have been exhausted since last summer, I think.  Exhausted even more so than usual.  Of course, the new GP keeps mentioning that beta blockers cause fatigue and that is a trade-off for having the blood pressure support.

Tuesday is an esophageal study.  Fun.  At my appointment last week, I talked at length with my GP about the swallowing problems.  Whilst they got significantly worse during the time my thyroid medication was lowered and better once it was raised again (I am so glad that whole thyroid medication experiment is over), I still have trouble swallowing drink and food and my pills.  It is mostly my pills, but I sure do get upset when I am struggling to swallow food.

I can swallow in my mouth ... things leave it ... but I am not swallowing well in my esophagus.  My GP thinks it is autonomic dysfunction, but she wants to rule out other things to be safe.  I am not looking forward to the study because of the barium.  Barium was hard to expel when I was healthy, so I can only imagine how hard it will be with my sluggish innards.  SIGH.

I am worried about going to both appointments because that means leaving Amos and, at the moment, Amos does not need to be alone.  I am such a horrible, horrible puppy momma.  SIGH.

Amos, out of the blue, decided that he wants to chew off his bit of tail (I HATE that the breeders docked it without asking).  I have been stopping him from doing so all day and whilst holding him, felt a bit of something hard on his back just above his tail.  I couldn't imagine what it was.  So, I started to investigate.  And did lots of puking.

My silly emotional stomach.

I figured out that it was a mat.  A rock hard mat that seemed attached to his skin somehow.  So, I began trying to lift it up enough so I could start cutting on it.  Occasionally Amos ears and tail (his long hair) gets a bit matted, but never on his body.  Until now.

I cut and cut and cut, teeny tiny snip by teeny tiny snip.  And then I came upon something dark and .... well, I realized that beneath the mat Amos' had a wound on his skin.  All I could see was black and was instantly convinced it was gangrene.  Hence, the vomiting.

I washed and cut.
And washed and cut.
And washed and cut.

I actually gave up and went to hold Amos in the GREEN chair.  But after a while, still worrying, I got up and worked on the spot again.

Thankfully, the black was only ... old dried oozing stuff.   After a lot of soap and warm water, I got the hair still remaining about the wound (hot spot, I guess), clean so that it was no longer stuck to his skin.

I am appalled, truly and deeply appalled that I let this happen to Amos.  I am a bit puzzled that the rock hard part of his back was missed by the vet last week.  I mean, she is so careful in examining him.  But I do not really find fault in her missing it.  How long have I been missing it?

I also cannot quite figure out how the mat happened given how many baths Amos has and how I keep his curls fairly trimmed.  And that worries me almost as much as worried about Amos' skin healing.

I went to put Kashi's old coat on Amos, the way that I kept him from bothering his wounds from the pit bull attack.  It took a long while to find it, but then I could barely get it around Amos' girth.

Yes, he's GAINED FOUR POUNDS over the past year, which boggles my mind.  I did think the weight would affect the fit of the coat, but it did!  So, that is the long-winded reason why I am worried about leaving Amos for both appointments.  I need to stay home so I can regularly yell, "Stop!"

That's his new word.  It is becoming rather effective.  However, Amos has not learned to "stop" for any significant length of time.  After obeying me, he will return to illicit activities once the temptation arises once more.  I would hate to come home from either appointment to find Amos has either chewed his tail or his back raw.

He's a bit cowed, at the moment, with all that tending to his person.  So, he's sleeping hard on my lap at the moment, recovering from all the trauma of that tending.  Is it realistic to hope that the wound on his back will be better by tomorrow afternoon having been cleaned and opened to the air?  I don't know much about hot spots.

Gosh, I feel so horrible ... such a bad pet owner ... and to have discovered this on Mother's Day, for all my talk of being Amos' puppy momma.