December 30th Our 25th Wedding Anniversary

So, today marks 25 years of our commitment to each other.  The last four years for have been a kind of turbulent that I could never have imagined, and especially this year that is drawing to a close.  Dissension and hostility on both parts have marked this last few days.  R will be released from Rehab on Thursday, with home health.  He was seen and treated at Wound Care by Dr. Greenfield who is a wound care specialist, but is also a thoracic surgeon.  He did surgically removed dead tissue from all of the wounds, but did what I call an excavation on one of the wounds on R's left foot, and ordered that he have a Wound Vac attached.  He does have cellulitis in both feet.  We have no idea how long he will have this device attached to this wound, but I've been even more insistent that we stay in Kingsport at least for the 4-6 weeks that Home Health Nurses will be coming, every Monday, Wednesday and Friday.  He's insisting that he is going home---with or without me.  I have told him to go---and let me know how that is working out for him.  Total Impasse.  Happy Anniversary.

Merry Christmas

Merry Christmas Wishes, everyone!

R Update

Tomorrow will be a week that R has been in the rehab facility.  He will be staying there until January 3.  Yes, Christmas and New Year's.   It seems he takes one step forward and 3 steps back.  He felt really bad yesterday and today.  He had a  couple of days when his legs weren't so swollen and weeping.  The wounds are slowly healing , but today his legs were weeping really bad again and he's very swollen.  I'm sure they will have to give him lasix again, and that will put more strain on his kidneys.  I feel so bad for him, and sad, and I'm trying so hard to keep his spirits up.  He's depressed over being there, and especially so because of the holidays.  He becomes very frustrated by all of it, and especially his inability to get his legs to work.  He said they feel like he has weights attached to them.  Between the cellulitis and the renal failure,  his body is having to fight so hard.  He's a very sick man, and this is such a vast, scary landscape that we find ourselves in. 

Update

R was finally transferred to the rehab facility yesterday evening .  He was surprisingly compliant with the move.  I think he is in the right place for him as they have skilled nursing, wound care, and three hours of physical therapy a day.   However, I'm as concerned about his mental abilities now as the other physical issues.  He seems more like himself earlier in the day,  but day draws into evening it's almost like he has sun downers syndrome.  So scary.  He qualifies for a 20 day stay under Medicare. 

Marlee and I are still with my sister, but had cleaners in the rental house yesterday,  and we started taking a few necessities in today.  We may spend our first night there tomorrow night. 

Really? It's December 12th? Really???

R has been in the hospital in a city an hour away from our home since Monday, December 3.  He is still in the hospital, and will be transferred to a physical therapy rehab facility tomorrow.  He may be there 3 days or 3 weeks.  I am hoping and praying for the longest time possible in hopes that he will recover some of his physical body strength, and that his open wounds will completely heal with the help of daily wound care and long-term antibiotics.  He has a yeast infection (candida) which the doctor says is hard to get---and hard to heal.  He also has a form of a strep infection, but not the kind associated with strep throat.  He has a bacterial infection in the wounds on his feet and right leg.  He is very weak, and is extremely wobbly in trying to walk on his own.  He is definitely a fall risk.  I am so relieved that I can't even put it into words that he will be cared for by professionals for some period of time.  I am emotionally and physically drained to the point of being functional, but just barely.

I have been at one of my sisters' houses in the same city that the hospital and rehab facility are located in. She has been pampering me and nurturing me and giving me tender loving care.  We got 10" of snow this past Sunday.  It snowed ALL DAY.  I was so relieved to be here at my sister's since we were snowed in on Monday.  Marlee and I have been here since last Wednesday (December 5) and will be here until this Friday (December 14) when Marlee and I will go to a house that we own as a rental property that is vacant right now.  We will make this our camp base for the time that R is in this city.  After R is released from the rehab facility, then we will have to make some decisions about where we will be for the next 3 winter months.  He wants to return to our remote (location) home...me, not so much.  I'm afraid I will need help with him that may not be able to get to us because of possible inclement weather and the horrendous road we live on.

So, this is where we are right now.  Just Going....One day at a time, one foot in front of the other, making each decision as it arises...

Thanksgiving Recap

R had doctors' appointments last Tuesday and Wednesday, and there is so much daily stuff that has to be done with only me to do it, and the taking to appointments as well (all of R's doctors are at least an hour away), that I didn't even give a thought to whether or not I would make any of my traditional foods for a proper Thanksgiving Day meal.  Thank goodness for sisters...my one sister that lives within an hour of me actually brought a box of her home-cooked food to us at the doctor's office on Wednesday afternoon so that we would have some special Thanksgiving Day food.  What would I do without my sisters, and especially the one that lives closest to me?

As of last Tuesday (November 20), R's blood work was "better, but not normal", according to lab work done on the 20th.  We will take "better", and hope that things continue to improve. 

Time is a funny thing.  The days each seem to speed by from morning to dark, yet at the same time, the minutes and hours can seem to stretch out into days'- long brackets.  I don't think I knew that a person could be so chronically, bone-deep tired and weary.  I seem to be going full speed most days, and then there will be a day or two thrown in the mix somewhere that I am just collapsed in a puddle in the middle of the mess. 

R has an appointment next Monday, December 3, with a Nephrologist (kidney specialist).  We are both apprehensive about it, and yet I will be relieved to have him seen by someone who can  hopefully tell us what is actually going on with his kidneys.  He is still retaining a ton of fluid, even though he's on a daily dose of Lasix.  He has developed another edema blister, this time on his left foot.  I'm still cleaning and dressing the wound each night on his right foot from a huge edema blister that got broken.

I look back over the path my life has taken to this point, and still can't figure out how this is where we have landed, at least for the near (and maybe far) future.

*I haven't been on the bike/trainer in at least 2 months, maybe longer.  I just got on it today and rode 1 mile, 9.20 minutes, avg speed 6.7.  Piddly amount, but at least it's another beginning.  Wasn't sure I would ever get on it again.  I have to say, though, my knees were so much better when I was riding more days of the week than not.*

Humble Quilts: Paradise: How We Can Help

Humble Quilts: Paradise: How We Can Help: So many heartbreaking stories coming out of California. I'm not sure why this tragedy has pulled on my heartstrings so much. Maybe it...

Trying

“I just do the best I can to face what life brings. That’s the secret, you know. That’s the way you change your fate.”

— ALICE HOFFMAN, THE RULES OF MAGIC

“Surrender means wisely accommodating ourselves to what is beyond our control.”

— SYLVIA BOORSTEIN

*Our hearts still ache for Bayley--October 2016*

“Let it come, as it will, and don't
be afraid. God does not leave us
comfortless, so let evening come. "
― Jane Kenyon, Let Evening Come

“The soul's bliss and suffering are bound together.” 
― Jane Kenyon

Happy Thanksgiving

From our home to yours, Happy Thanksgiving.

Not Qualified for the Job

By reason of default, and certainly not by qualification, I have been put in charge of weighing R every day, and trying to determine if he should take some Lasix each day, based on loose guidelines that one of the doctors has given me.  It is not a position that I would have willingly taken on because it is such a serious thing, and it weighs heavy with worry on my mind.  We are in a holding pattern right now, with bits of progress in some areas, and I hold breath and pray that he can at least maintain where he is right now, with his foot and leg slowly healing, but healing, and that he can continue to just go forward without more serious kidney issues or falls until he has regained significantly more strength.  Every day is such a huge challenge for him. 

The daily chores, along with the nursing thrown in for good measure, leave little time for me to even think about how I'm doing---physically or mentally.  I fall into bed each night, exhausted to my soul, knowing I've done the best I could this day, and fitfully and fretfully try to get enough sleep for the challenges ahead in the coming day. 

No Treats---Just Tricks on Halloween

Our internet went out on Halloween, and it was just restored late last night.  R has had multiple doctors' appointments in the last two weeks, and we have desperately needed to do some medical research online, as well as health insurance and Medicare changes needing our attention, but we were reduced to pacing the floor (me) and bemoaning how much we needed to do and couldn't do with the DSL out (R).

We had an appointment with the Vascular Surgeon last Friday (11-9-18), and he said R is not well enough to withstand the aneurysm surgery at this time.  He set up an appointment with a Cardiologist in the same group for today (11-15-18).  Leaving the Heart Center last Friday for another appointment at another location, R had a hard fall on the concrete sidewalk.  Was sent for CT of the brain to make sure there was no brain bleed.  There wasn't, thank goodness.  At the second appointment, they told us he was on the verge of his kidneys completely shutting down.  His blood pressure was way too low, and he was severely dehydrated due to Lasix.  He was given IV fluids and then released to come home.  It was a long, harrowing day.

Today, we see the the Cardiologist and have lab work again to see how his kidneys are doing.  This is the scariest journey I have ever been on in my life.  And Winter is setting in.

Update on Randy

A quick update on  Randy...got a call from the vascular surgeon's office this afternoon saying they've changed his surgery date AGAIN  from November 5 to November 8.  This whole mess is so bizarre, and I don't know what to do with my anger, fear, and loss of all trust in this doctor.  Randy is totally resistant to going to another doctor.

The Passage of Months

From March through today has been full of challenges, mostly for my husband, who has a rare vascular autoimmune disease which has been progressing for about 4 years now.  Their best medical guess is Giant Cell Arteritis and Polymyalgia Rheumatica, or worse, Wegeners Disease.  They all have similar or overlapping symptoms.  There seems to be a new issue every day or two that we have to deal with. Scary, scary shit.

This year has been particularly challenging as he was also diagnosed with an abdominal aortic aneurysm which doesn't have normal parameters and is getting close to a size that would be in danger of rupturing.  The surgery, which is a 6 to 7 hour ordeal even without complications,  has been scheduled twice now, and then canceled by the doctor for varying reasons.  The surgery is now back on for November 5.  However,  his health is so precarious due to the autoimmune disease that the surgery scares me to death for him, and I struggle every day to hold myself together, and to keep him up, both mentally and physically.  He really has no choice but to go through with the surgery.   Where we live is a difficult place to be with serious health issues and heading into the Winter months.  We live in an isolated place prone to power outages and road blocks from downed trees during winds, or heavy rains, or snow, as Winter deepens.  And there will be numerous follow-up appointments.

I miss my blog, and the blogging community , so I've decided to try to record our journey here.  I am relatively healthy, thank goodness , and Marlee is my constant little sidekick.

Have been MIA

Life has been hurtling at me and my family at a dizzying speed.  I truly don't accept change with even a speck of grace.  I bow up like a cat hissing, and dig my heels in like a stubborn dachshund.   Just not in my DNA to do it gracefully.  Makes it hard to get out of bed a lot of days. 🙄