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

Saturday, August 6, 2016

Antibiotic Gut......

About six weeks ago I got a toothache.  It wasn't bad, initially - nothing a little Tylenol wouldn't kick - and since the tooth in question was up under a permanent bridge I just said a prayer and waited. But it felt suspiciously similar to the pain I've felt when I was working up to needing a root canal, and since I didn't have a thousand bucks sitting around waiting for a dental emergency I hoped for the best. Of course, it was a Sunday when it went from Tylenol-will-do-it to holy-crap-gimme-narcotics level pain.  I could feel some swelling, so I grabbed some amoxicillin (leftover from Maybelle's Lyme disease - yes, I took DOG antibiotics - don't judge me!) and called the dentist first thing Monday morning.  

An x-ray showed what I already knew - there was an infection.  But the worse news was that this tooth has already HAD a root canal, so in addition to it being permanently glued to a large bridge, it's already sealed shut.  So whaddaya do about that??

Well, you take antibiotics.  Amoxicillin is fine, but increase the dose and hang in for a couple of weeks.

Okey dokey.

I finished, as instructed.  And three days later the entire right side of my face blew up.  

This would not have been so bad, aside from the pain, except we were loading up for our annual mission trip the following evening. So I called the dentist again and explained that not only was I worse, but I couldn't come in to see him.  (Always what your provider wants to hear, I assure you.)

 "Well, how about we put you on some amoxicillin?"  How about not, since it worked so well last time?

"Clindamycin, then."  Alrighty.

I started it Thursday evening, and by the Friday night load-up I was at least 50% better, and off we went on Saturday to fix houses in West Virginia, an hour and a half from the nearest decent hospital (directions are always posted at the center, and every group has a copy): 

.

By Tuesday evening it was apparent to me that I was suffering from one of the rare side effects of this class of antibiotics:  A Mallory/Weiss tear of the esophagus.  there was no bleeding, but the pain when I swallowed was spectacular, and the heartburn was unbelievable.  I was inches away from vomitting but terrified to do so:  With a partial esophageal tear that is the VERY last thing you want to do.

And on Wednesday, the cramping started.  Nothing terrible, thank God, and our worksite had a functional bathroom.  But on Thursday, our center lost all of its water, so there were no showers on site, and very limited toilet flushing for our final two days.  You cannot imagine:  One hundred people, half of them teenagers....and I HAVE to go to the bathroom. At a dead run.  In the middle of the night. Three times.

I came back, returned to work, finished the antibiotic. The great news is that the tooth is 100% better.  The okay news is that my esophagus healed up by the time we got home.  The not good news is that the rest of my gut just kept getting worse.  I couldn't eat much, and I couldn't stray far from a bathroom.  The dogs got very short walks. I dropped three pounds. Then five. Then eight.

By Wednesday of this week I hit the "I want my mommy" point, and called my doc.  Thursday I saw the NP, who ran some tests.  The good news?  No dehdration and my sugar is awesome.  The bad (but hardly unexpected) news?  I have C. diff. 

Basically, we all have Clostridium difficile living peacefully in our guts.  Most antibiotics do NOT kill it, but they wipe out everything else that usually keeps this bug in control.  Once that balance is upset, the C. diff overgrows and produces a toxin.  It's the toxin that is the issue, causing cramping and diarrhea.  In fragile patients, this can lead to severe dehydration, perforation of the gut and even death.  

I'm not so fragile.  But there were moments yesterday when death made a certain degree of sense.  

So now I'm on yet ANOTHER antibiotic to make my gut settle down.  So far, I can't say whether we're winning the war or not, but I did manage to leave the house for a little while today.  I'm not allowed to return to work until the symptoms resolve.  

I try not to be too cavalier about the possibility of side effects of medications.  I know they happen - I've had plenty myself.  It's easy for doctors to forget or play down the suffering caused when this sort of thing happens.  But honestly, the alternatives were limited as well.  Dental abscesses are no joke:  I had a young patient have a stroke as a result of one that encroached into the carotid artery, and not too long ago the news had an article about a 12 year old who died from a dental infection.  

But I sincerely apologise to ANY patient who feels I didn't sympathise properly when they reported a side effect.  

DeeDee

Sunday, July 31, 2016

New Use for a FitBit....

Babygirl's most recent visits to the doctors were generally productive and reassuring.  Driving in the Philadelphia area during the Democratic National Convention, less so.  All of the trucks seemed....confused.

Nephrology had nothing new to say.  They scolded her for missing doses of medication (how does that even happen? I wake her up EVERY DAY and she has phone alarms.  It's the morning pills this time, two sets still in the boxes when she sorted.  UGH).  The kidney is doing well despite this, with a creatinine of 1.05, about average for her lately.  The headache medication still have her a bit too acidic but they decided that taking 14 bicarbinate tablets a day was about the limit.  Fourteen.  It's a lot of sodium, seriously.  So, lab work here in six weeks, and see you in three months in Philly.

Gyn had nothing new to add.  We were overdue by a couple of months there.  Dr Z of course took Babygirl aside alone to question her ("Why do they always ask me if I feel safe??" she asked me later.  "Be glad that question puzzles you," I replied.  "Oh.").

Neurology talked Babygirl into the full 31-injection set of Botox.  Watching this provider do the injections, compared to the CHOP provider, it seemed that she was more organized about her approach, or perhaps it was that she just talked more about the logic of the shot locations as she worked.  The really interesting thing was that I didn't need to order the Botox from our specialty pharmacy and have it shipped to Nemours/Dupont hospital ahead of time (copayment:  $300 each time CHOP had us do this!).  These folks just pulled the vials out of their fridge and gave it to her.  It will be part of the bill for that day, so it will be interesting to see how that plays out.  I did call our insurance company ahead of time to check on this, and they weren't sure WHY CHOP had us send the medication in like thay - they would have paid for it as part of the service.  Dr P, our new neurologist, tells me that they get the Botox for about $100/vial.  Since they use 2 vials for Babygirl's injections, the total cost MAX would be $200, so what the heck, CHOP? Could I have my extra $200 back?? Just one more reason that I'm glad we aren't going there anymore.

One of the big problems for people with migraine is sleep. Babygirl routinely reports poor sleep, so Dr P asked me to put my FitBit on Babygirl at night to see how much sleep she is getting, which is a creative approach to data collection. I've also made Babygirl commit to turning off all electronics at 11 PM whether she is having a hard time sleeping or not.

We are to update neurology in 2 weeks with a headache report and sleep data.  And then we'll see.

DeeDee

Saturday, July 30, 2016

Sure-Fire Paint Remover....

Some years ago when I decided to paint the fireplace bricks, I painted the cheap-looking ceramic tile hearth as well. (Painting With Brownie Mix) The tiles are bland beige squares, and the former owner must have gotten a deal on them because he used them all over the house on both sides, on walls, floors, counters - places where floor tile has no business being.  We've gotten rid of all of them, except these.

The ultimate goal is to install a gas fireplace insert, and when we do, we'll upgrade the sad little hearth to something pretty.  Poured colored concrete, perhaps, or quartz, or Italian tile, or ANYTHING but these sad, boring beige babies.

Painting them brown helped a little, but paint doesn't really stick too well to tile unless you rough it up a little first, so over the years it has chipped away.  I've convinced myself that it's charming.  It's either self-delusion or go find the rest of that can of paint and touch up, and THAT always sounds like work.

Enter.....Larry.

You can see the "charming" tile next to him on the floor, under his Sudoku book.  He's chill that way.

We've had him since mid-May, and he's been a perfect gentleman.  Or he WAS, until the Great Backyard Apocalypse engendered by our neighbors' July 4th celebration began.  Apparently setting off fireworks less than 30 feet from his head was more than he was prepared to take. And thus began Poopmaggedon.  It took us nearly two weeks of leash-walking the poor boy into the backyard every day to convince him no one was going to kill him.  And in the meantime, his guts were in a total, uncontrollable uproar.  His location of choice to let go?  The tile.

It could have been worse.  He didn't select the Chinese rug, and he (mostly) avoided the hardwood. And the tile is not in a path that anyone has to cross in the dark. But let me tell you:  Dogshit is fabulous paint remover. Every successive cleanup peeled larger and larger circles of paint off of those tiles, leaving the left side completely, well, unpainted.

If it weren't for the smell, there'd have to be a patent here someplace.  The supply appears unlimited, it's cheap to produce and probably not hard to package and ship if anybody needs some.  I'd be happy to help out.

DeeDee

PS Some crating, probiotics and regular walks have him set right.

Tuesday, July 12, 2016

Turning It Upside Down....

Once you have lost 80 pounds, you have a little....mmmm....slack.  Since I have about 20 more to lose to get anywhere close to a healthy weight, I have to live with this for the time being.  Dressing around this requires careful shopping and fitting, and if you all want to say you never noticed, well, then, I'm shopping pretty well, thanks.

But I'm enjoying this yoga thing, so I'm making a comittment in appropriate clothing.  I had pants, but they were purchased about 30 pounds ago.  Loose t-shirts do okay for cover up, but when you go into Downward Facing Dog, you get Upward Facing T-Shirt.  Not only can't you breathe, but everyone else gets a flashy show.  And the slack stuff?

Okay. Feel free to stop reading if you are faint of heart.  Or take a shot of whiskey or something.

It's bad enough that when I am moving quickly up a hill there are inexplicable squamous smackdown noises when my 'apron' meets my upper legs.  Turn that upside down and there's an almighty adipose avalance toward my ribcage.  To make things worse, I finally learned how to relax all my facial muscles when I'm upside down.  I'm thinking that perhaps Maybelle the hound-dog has been reincarnated in the result:  I can feel my jowls displace my cheeks, but that's okay because I think my cheeks have shoved my eyelids up to my hairline.  (Side note:  If I were truly intended to put my arse above my wrists, a merciful Father would not have let it get so big.)

Thank God for Old Navy.  They actually believe that Plus Size women exercise, and they make stuff that keeps your skin from sliding all over the damned place while you do it (well, except my face.  No fixing that in this life, I suppose), and shirts that stay DOWN without making you look like you are wrapped in an inner tube.  I wouldn't wear it to Walmart (although I've met people who would), but I'm okay for class.

So far this has had no measurable effect on headaches for either Babygirl or I, but I feel like my posture has improved, and I can tell my balance and upper body strength are better.  It's an easy place to meditate. And it seems nice to be in a 'sport' where the only competition is internal, and everyone cheers everyone on.

DeeDee

Sunday, July 3, 2016

The Downside of Fit....

Adding three 75-minute classes/week to a full schedule sucks some time out of your life, you know?  Not that the yoga hasn't had some very nice benefits.  Babygirl and I get to spend time together. We are getting in better shape.  We have some new life skills:  Breathe.  Be in your body.  Let your shoulders relax down your  back.

I no longer fall sideways everytime I stand on my left leg.  Babygirl is beginning shape up a nice plank.  Neither one of us has any real good news to report yet on headache improvement, but it's less than a month, so....

In other news:  Larry.  My sister-in-law (an animal savant if ever there was one) said, after one brief glimpse of Larry, "He's at least 10" despite the rescue's estimate that he was about 6.  Our vet saw him the other day, and she agrees with my SIL - he's probably about 10 years old.  Ah, well, we don't care, he's cute, and walking him has made him younger every day. Yesterday's walk had him leading ME the whole way.  He's so different from Maybelle. She selected a different route every day, and crossed the street as often as I would let her.  Larry is more predictable:  Go west until I won't go west anymore, then go north until I turn him toward home. Unless it's hot, then south to the river.  We've heard him bark only twice, once when another male dog tried to check out his sexuality and he let out a houndy, "Notgay!" and once in the middle of the night, when he bayed at SOMETHING outside the front window for long enough to wake us all up.

So life is pleasantly boring, but singularly lacking in free time.

Besides, it's summer. I have books to read, and grandkids to hang out with.

DeeDee