Tuesday, December 6, 2016

Mourning....

It is no surprise that I am still mourning.  It was about a year ago that mom took the fall that was, in the end, The End.  (I instinctively looked back to find the blog post about the fall, her hip fracture, and all of the rest but....there is a massive gap from December 1, right before she fell, until February 4, just days before her death.)  A lot happened in between there.  I guess, in a way, that is what this post is about.

December is Mom's birth month. Last year she spent her birthday in the hospital while they worked out doses of pain medications adequate to manage an irreparable hip fracture.  She was oblivious to the time of year, and had entered that phase of dying that includes visits from long-departed loved ones.  It was clear she would never come home, and decisions had to be made about her belongings, her kitties, family photos, trinkets and jewelry.  I had to work.  I had to make Christmas merry for the grandkids.  I had to manage her finances, figure out nursing home paperwork, visit her in the hospital and still attend to the usual miscellaneous medical needs of Babygirl and the rest of us.

It was a whirlwind.

My brothers came and sorted through thousands of pictures.  Curlygirl used her internet savvy to get a lot of furniture sold and moved out.  And as Curlygirl and family had already planned to move in and help, they went forward with the move, directly into the chaos.

January was hardly better.

Sorting/selling/settling continued.  Mom was moved from the hospital across the street to a nursing home 10 minutes away.  Hubby had massive back surgery.

February brought baby BamBam, followed immediately by a run to Philly for Babygirl.  We arrived home, exhausted as always, late on Wednesday evening.  I debated a run to the nursing home but was just too tired.  As I was getting ready to go in the morning, I got the call that she had just passed.  And not even one minute later came a call asking me if I could come pick up Squeaker at his school because he was throwing up and they couldn't reach his parents?  I'm not kidding, not even a little.

Just writing this down brings on a head spin.

We live in a crazy, crazy world. And we live at a frightening pace.  And while we did have really good family time at Thanksgiving with Mom before her fall, and good family time at Christmas before she died, AND good family time at her funeral.....it just didn't seem like enough, you know?  I look back on those three months and it's like looking through a kaleidescope of shifting, bright brittle colors:  Beautiful, but difficult to interpret.

What triggered all this, you ask?

At the end of yoga class today, because the room was chilly, the instructor came and covered each of us with a blanket during shavasana, the final quiet pose of the class.  The act of having someone 'tuck me in' was so intensely evocative of my mother that it made me weep.  And while I was lying on my back with tears trickling into my ears I was flooded with memories, each and every one of them of my Mother's laughter.  Monopoly at midnight on New Year's Eve.  Girl Scout Camp.  Makeshift living-room plays about Bible characters (did the Bible mention matzoh ball soup??).  Seriously, my mother once laughed so hard at us that she crashed the car into a tree (low speed, no injuries).

I'm already 30 years older than EVERYBODY in this class.  The last thing I need is to have the lights come up while I'm trying not to simultaneously laugh and cry for no obvious reason.

It's amazing how much emotion you can begin to process in three minutes, and how much time you can compress into that space.  This is, by the way, entirely against the point of shavasana as I understand it.  But the soul needs what it needs, right?

My Christmas cactus is blooming.  Right or wrong, I believe my Grandmother makes flowers bloom for me when times are tough.  It started blooming on my Dad's birthday, and I'm thinking it may still be blooming on Mom's.   Hugs come from heaven to us from all different directions, be it a flower, or a blanket from a stranger.

DeeDee


Thursday, December 1, 2016

People Look East....

One of my favorite Advent hymns is People Look East, although it was new to me just a few years ago.  Written in 1928, it has a more ancient sound to it, and it has an awesome alto part (always a plus in my book LOL).  

But the appeal is very deeply rooted in the things that are most important to my heart:  Being prepared, being hospitable, making life as lovely as you can with what you have been given with what strength that you possess. The hymn calls us to prepare, to endure, to grow, to shine.  It calls us to be excited, VERY excited!

Guest, Rose, Bird, Star, Lord - they are ON THE WAY!  Get cracking, people! It IS the crowning of the year.

DeeDee

Wednesday, November 9, 2016

Insurance Coverage....

When I was a kid I didn't think about insurance coverage.  My dad worked for Ford, a decent factory job.  His union negotiated things like a 40 hour work week, paid sick and vacation time, health care coverage and retirement.  Until he died last summer he was still on Ford's health care plan, and he'd been retired for over 20 years.  So when I was hospitalized with kidney disease as a child and needed what was essentially experimental treatment to avoid major surgery, we were covered.  And as a result, I still have healthy kidneys.

When I was 18, my coverage under my dad's plan ended.  I paid a nominal fee for campus insurance for the next three years, and then got a job with excellent health and dental benefits (my teeth still have many of the fillings paid for by that insurance - I'd likely be close to toothless without it).  During medical school I was covered at the school clinic, but not for dental (I lost a tooth during that time). Since then, I've been lucky enough to be employed in jobs that provided reasonably affordable group health insurance.

I am very lucky.  I never had any substantial gaps in coverage, and never had any significant illnesses when I did.

Let's move down a generation.

Before Affordable Healthcare, kids could be covered under their parent's insurance if they were full-time students up to (I think) age 26.  That was fine, but as everyone knows, college costs have skyrocketed, so for lower middle class kids (or anyone!) there are gaps where they take a year off to work for money for the next year.  This is what happened to my nephew.  At the ripe old age of about 20 he was diagnosed with high blood pressure (it's a family thing. It sucks, but it is what it is, you know?).  During a gap year, he was working at Walmart for just under full time. He had no coverage, and didn't have the $75 to pay for a doctor visit he needed to keep his prescription going.  That's 10 hours of work at minimum wage, right? BEFORE taxes. So he ran out of his $4 medication.  And then his pressure when up.  And then he suddenly lost the vision in part of one eye, ended up in the ER ($500) with a CT scan ($300), with follow up with an ophthomologist ($200) and so on and so on and so on.  (At minimum wage this is over 130 hours of labor, more than a month's work at a less-than-full-time no-benefits job.) This is medical care for the poor without health care.  It is endlessly costly, and they can't pay it, and the hospitals and doctors end up eating the costs and charging everybody else more to make up for it.

One of the benefits of the Affordable Healthcare Act is that kids can stay on their parents' insurance to age 26 whether or not they are attending school.  Another is that pre-existing conditions and gender cannot be held against you. For Ana, this is EVERYTHING.  As it stands now, she can stay on my insurance until she is 26, and by then I was hoping that the Affordable Healthcare Act would offer some truly affordable options.

As it was before, her insurance would have ended when she finished school.  We are barely able to manage high school, and she is enrolled on line at this point.  She is not going to graduate at 18, so we have a little more time than my head usually screams, but by 20 at the latest she'll be done.  And then....

If Affordable Healthcare is repealed in its entirety, she will have no healthcare coverage.

She is a kidney transplant patient.

Her transplant medications alone run over $7000/month.  Add in her headache medications.  Add in quarterly doctor visits ($600).  Add in quarterly Botox injections ($1500).  Add in quarterly labs ($1000 - $10000 depending on what they need).  She hasn't been hospitalized this year, but we just finished paying off what we owed from 2015.

Here's the bottom line:  We can sell our home and try to find a cheap two bedroom appartment (and if we do it will be in PA where the insurance coverage is better!) and we can cash in our retirement.  The sum total of that plus my salary would keep her going for about two years.  Maybe a bit longer. We would, of course, use some of that money to purchase a health care plan for her, but there would be a pre-existing condition clause that would exclude ALL of what is wrong with her for the first year or two, so we'd essentially be paying a lot of money for nothing for a while because that is how it used to work.

If we're lucky, we'd bridge the gap somehow and survive retirement on Social Security and part time work.  If not....the transplanted kidney would fail.  She has already said she will refuse further dialysis, so....she will die.

I am incredibly grateful for insurance coverage.  I am more than a little afraid, this morning, that we won't always have it.

DeeDee

Thursday, November 3, 2016

Physical Strength....

Gratitude for our bodies is something we frown upon in this country.  It's odd. We are the most narcissistic people on Earth: Snapping selfies, wishing for thigh gaps, fishing for complements on today's outfit.  But we are not supposed to appreciate ourselves, ourselves.

In 2004 I went on my first mission trip with the church.  I was morbidly obese and horridly out of shape, but young enough to get by on grit and stubborn stupidity.  At one point on a rainy afternoon (they were ALL rainy that year if I recall correctly) I stepped up about 18 inches onto the porch we were building.  Because I wasn't strong enough to lift myself up with my arms, my mud-caked boot slipped along the porch and the other shin slammed right into the front edge, with all, oh, let's be honest, 260+ pounds of me right on top of it.

I won the 'Biggest Bruise' contest that year.  I'm sure I cracked the surface of my tibia (you can still feel the callous on the front of the bone!), and bones just bleed and bleed....

It was a sentinal moment for me.

I'd already developed hypertension and was on medication.  But denial is a funny thing.  Sometimes it takes a good, solid CRACK to open your eyes.  If my body was the Temple of the Holy Spirit, well, I'm surprised she was willing to hang out there at all.  But Grace is like that.  God isn't waiting for our bodies to be better temples.  He's waiting for us to ask for help to become what he wants us to be.


I started getting in better shape.


This morning before work (I start at noon on Thursdays so don't get TOO impressed) I got up at five, walked three miles with the dogs, prepped a small bedroom for painting (cleaned out the closet, washed down the walls and woodwork following Hubby's patch-and-spackle repairs), and painted.  Up and down the ladder, trimmed around all the bookshelves, up and down two flights of stairs, and .... done. Well, there's still the woodwork, but that is Satan's own part of painting, don't you think?


If I hadn't slipped...would I be in good enough shape to do this?


DeeDee

Wednesday, November 2, 2016

Maturity....

November is gratitude month, and I already missed the first day.  Such is life, I suppose.

I've set a personal record on Blog Silence, and there is a reason:  Babygirl is growing up.  Not too long after my last post we were discussing some random thing, and she made a comment about whether or not I was going to blog about it.

Don't get me wrong. It's not as if I didn't know she knew about the blog.  But the blog's been here for over five years and it was the first time I could recall hearing her mention it.  And there was something in the WAY she mentioned it that made me wonder:  Does she mind?

You have to understand there there are hundreds of intimate details of our lives that never make it into the blog.  I DO have a filter of sorts.  But there are details that perhaps, now, need a better filter.  A more mature eye.  A gentler hand.

Today I am grateful for maturity.  I am grateful that Babygirl and I have survived five and a half years of chronic kidney disease together, and that she has had the chance to grow into a young adult in my home. But she is a different person than I am, quieter and more private.  More SnapChat and less Facebook, if you will.

So, the first 699 posts were Kid.  This is post #700. We have the kidney.  Maybe time for things to shift.

DeeDee

Thursday, September 8, 2016

The New School Year.....

Babygirl is 17.

How did this happen?  She was 11 when she was diagnosed, 12 when she got her transplant.  In retrospect, it feels like an eternity of driving, waiting, praying, suffering, rejoicing, walking on pins and needles.  In my heart it feels like only moments ago that I comforted that tiny raging toddler after her weeping foster mom left her in our hotel room in Guatemala.

I wish it could be easier, for her sake.  But for me?  I could ask for a simpler life, but I couldn't ask for a better child.  She is kind, she is funny, she is responsible.  Despite all she goes through she finds reasons to laugh and crack wise.

(Funny Mission Trip Story:  We were REALLY out in the boonies, no Dairy Queen in sight.  But there was a local convenience shop that sold gas, snacks, milk, beer.  It also had ice cream, milk shakes and 'blizzards.'  At the end of a long, hot day we stopped there with our van for the first time.  As we unloaded the team, one of the kids looked at the signage in the window of this tiny place and said, "They sell Vape supplies here?!?"  Without missing a beat, Babygirl replied, "That's how you know it's QUALITY ice cream.")

School started two days sooner for her than for her peers locally.  We opted, this year, to enroll her in an online school.  (This is one more situation where I could wish we lived over the Pennsylvania border:  PA has free online schooling available for any in-state student who needs it.  NY does NOT.  PA also has insurance that covers catastrophic illnesses in kids regardless of parental income. NY does not.)  But for a fairly reasonable fee, we have her in a NYS accredited high school online.  Because her former headache doctor felt she should attend school whether she had a headache or not, she did not get a single 10th grade credit, so we are starting that grade over.  The advantage of online schooling is, however, that she can go as fast or slow as she needs to.  She can 'attend' class as easily at 2 PM as at 1 AM. So if she is up to it, and remains motivated, she can gradually catch up some credit.  Her hope is to graduate on time with a Regents diploma, which we would not be able to acheive with ordinary homeschooling.  She's working on getting into a rhythm with the programing.

On top of this she has agreed to take care of her nephew, Squeaker, when he gets off the bus after school each day so that her sister doesn't have to pay for daycare.  She is truly amazing.  I am truly blessed.

DeeDee




Friday, September 2, 2016

Doctors Are Lifesaving Idiots.....

Picking up where we left off.....

Dental infection.  Antibiotics. Twice. Severe gut infection caused by dental antibiotics.  Winning the gut battle with NEW antibiotics.

Except.....not.

I was given metronidazole for the C. diff, one of only two available treatments.  It must be taken every eight hours for 10 days.  By the fourth day the diarrhea had resolved, but the medication itself was making me so sick I could barely eat.

I left a message for my doctor:  "I have so much nausea from the medication that I've lost another two pounds.  I can't take anti-nausea meds because they make me to sleepy to work. I have a yeast infection, and my tongue is BURNING."

Summer makes communication difficult.  My doc was out of the office, as was the nurse practitioner who initially saw me.  I have all of my medical records in my married name, and although the entire front desk knows "who I REALLY am" (AKA a partner physician in disguise) when I call, the nurse and doctor who managed my message apparently did NOT.

Here is how the call back went:

Nurse:  "The doctor wants you to know that you have a very serious infection and you must finish your antibiotic.  He says that if you would take it with food you would have less nausea.  He also wants to know where you think you have a yeast infection?  And he wants me to tell you that this antibiotic does not cause yeast infections.  It does, however, cause a metallic taste sometimes, and that is probably what you are feeling on your tongue."

It is a testament to my overall patience that I let this run its course.  Because, really?  I am a FIFTY-EIGHT year old woman, and odds are good I have had at least ONE yeast infection in my life and know EXACTLY where it is and what it feels like.  PLEASE do not assume that my IQ is under 80 before you have even spoken to me.  ASK if I am taking it with food, don't assume that I am doing it wrong.  And hey, here's an idea - check the previous provider's note:  Even if you wrong-headedly believe that THIS antibiotic cannot POSSIBLY be the cause of all this trouble, could it be the fact that it is the THIRD DAMNED ONE in less than a month????  I mean, I didn't get this very serious infection outta nowhere, did I?

Ugh.

Me:  "First, let me introduce myself.  My chart is in my married name but I am Dr. D.  I am altogether aware of how serious this is. This is my SIXTH day of this antibiotic, not my first.  I am not being a baby about the side effects, I AM taking it with what little food I can get down and I am trying to WORK and not vomit on anyone.  Tell him the yeast infection is in my VAGINA, and tell him this is my THIRD antibiotic in less than two months, which he would know if he had read the last provider's note.  And this is no damned 'metallic taste.'  My tongue is on fire.  Have him call me if he has any questions."

He called in a fourth antibiotic and some yeast medication.

I've been in practice for nearly 30 years and I don't think I have ever asked a grown womant to explain to me where she 'thought her yeast infection was located.'

I can't tell this story without every nurse in the room laughing their butt off.

Anyway.

I started the new medication, which is FOUR times daily.  The nausea and burning subsided, and I actually managed to have a couple of good work days, and felt pretty well for our beach vacation.  I completed a total of 14 days of treatment between the two medications and came home and went back to work.

Monday was fine.

Tuesday was...uncomfortable.  Tuesday night was an up-and-down to the bathroom festival, and by Wednesday it was clear that I had not succeeded in clearing the problem.   Thursday I went to my own doc (OhThankGod).  In less than two days I was MUCH sicker than I had been the previous time.  This time my blood work confirmed dehydration.  I was sick enough that I couldn't even read. For me, that's SICK.

Cultures were repeated and were again positive for C. diff and he took me out of work for a week and restarted a second course of antibiotic #4.  It was about four days before I could really clean up the work I'd left undone.  And this time, instead of taking the medication four times a day whenever I remembered (I did get in four a day, but they weren't too evenly spaced), this time I have an alarm set for every 6 hours on my phone.  I wake up twice at night to take them. It took the full week to feel like I was anything close to normal.

I'm cleared to return to work on Tuesday, although I'll still be on the antibiotics at that point.  Pray God I don't have a third recurrence.

DeeDee