Friday, July 27, 2012

Compassion and Goodness

One of the things I do quite a bit these days is cry.  If I did it prettier and without a runny nose, I'd say that I "weep," but who am I kidding?  I have been known to blow my nose on my tee shirt and wipe my eyes with the back of my hand, flicking the moisture willy-nilly, or letting Dobby clean me up.  He does a great job, even if it does mean that I have to go disinfect myself afterward. He gives a bit of a cheshire smile when I attempt a purr. If someone, even a cat, shows you that much love, you don't interrupt so as to make a critique.

Despite the growing proclivity for leaking saline, which, given my fevers, I can ill afford, emotional stuff builds and builds until bursting seems the only option.

 From Compassion and Goodness

That's when having a best friend sitting close, gently, with savvy, holding my CRPS hands just right -- not stroking, but holding firmly -- would be nice to have.  That I don't is entirely my fault, but doesn't keep me from that morsel of self-pity. I could change this friendship dearth in a mere moment, but I don't, and that's stupid.

Add it to the Stupid List.

Back when I tried to help out some in the fight against people being homeless or so flirting with homelessness that their days were built of bricks dense with stress, back when I spent the day encouraging and fussing, modeling and experimenting with young minds, chalk in hand, back when rushing home to make simple pasta, marinara, music on, back when... I never cried, wept, or had many ocular leaks at all.  The lesson?  Stay busy, do what you love, give back, and be open to the day's unexpected gifts.  Lacking a means of transportation, the men at the shelter welcomed me onto their duct-taped, prayed-over bus that left at 5:30 AM sharp, and got me to the closest metro station for the second stage of my journey to school.  They were sleepy sweet, bitter sharp, funny, depressed, hopeful, a boon one to the other, and to me, the hitchhiker.  It got more complicated as I lost mobility and my scooter joined the dangerous pile of wheelchairs and walkers that we very illegally stashed in the doorwell.  But no tears, not even from the men who surely had reasons to dissolve.

I need to recreate that experience -- without the "elderly, sick, and/or disabled" men without physical or emotional shelter to call their own, without the ensuing two-hour trip to school, without the talented teens on hormone overdrive (and their equally uneven instructors), without the pots of roiling, boiling water and rotini, the rush back to the shelter for evenings of laundry and serious competitions of hearts, spades.  In between hands, grade a paper here, grade a paper there.

Please don't stop, don't allow yourself to be stopped.  If you pause, even, covet the busy-ness with love, and return to it refreshed.

Should you, though, find things rough going, and going rough for too long... Should you not feel rested after resting... Should you lose the joy in passing as yourself through hard things, remembering your swollen feet on the crowded platform, and not the too-cool-for-school fourteen year old goth giggling with a cardiganed lady who, given their shared nose stylings, must be his grandmother... Should that happen, don't stop, still don't stop, even if it means a decade or so of traveling to a hard cadence, of walking from the same points back to the same points.  

If you've read much of this odd blog, you will have found the occasional reference to a man called "my MDVIP Go-To-Guy." He's a doctor who stepped out of most of the madness that has overcome medical practice, deciding instead to have a smaller practice, dedicated to wellness and the spending of adequate time and attention to each patient.  I remember him saying that he wanted to enjoy practicing medicine again, that he was spending excessive time on paperwork and insurance companies and we all know to what he is referring.  I suspect he is a Republican, but I forgive him.

When I had to go without insurance because BCBS priced me out of coverage (They raised my premium four times in a year, to $1513/month, plus a hefty deductible;  They simultaneously began denying me coverage for procedures that needed repeating, like cultures to identify nefarious infective bugaroos.)  Left uninsured with an active bone/prosthesis infection, my MDVIP Go-To-Guy got me through that time by researching the cheapest drugs, by being so vigilant that I never once had to be hospitalized.  He was often praised with the highest praise we have here in Tête de Hergé, being named "a prince, a peach, a pear." 

But when the Affordable Care Act passed, with its life-saving provision of PCIP (The Pre-Existing Condition Insurance Plan), I had to have the infections addressed by a bevy of specialists, the bevy-est of micro-managers who saw me as an eyeball, a shoulder (sometimes left, sometimes right), sticky red blood, and ill-behaved connective tissues, some odd neurological disorder, and a twinge of an attitude.

Essentially leaving the attentive care of the prince, the peach, the pear for Infectious Disease Dood, Shoulder Guy, and a host of White Coats that often didn't even bother to introduce themselves before billing me $300 for scribbling in my chart after sticking their pointed heads inside my hospital room to swap howdies, I felt very much left on my own, and helpless.

What was the plan?
Who was in charge?
Why won't you answer my questions?

Because he accepted email communication, I began a process designed to keep my MDVIP Go-To-Guy up to date on the goings-on, because Lord knows, in this technical age, it's nigh unto impossible to fax, scan, email, or convey telephonically any results, plans, ideas related to my care.  We were dealing with an infection whose bacterial, viral, or fungal basis refused to grow in the laboratory, despite being abundantly evident in surgery.
But then, you know all that old story.

Lately, I have abused the email privilege.  Well, honestly, I don't think I have, but I know that most would say so. 

I don't know what I would have done these last few weeks were he not there at the other end of these garbled messages.  He is limited -- by good sense, and by, I am sure, legalities -- in how he can respond.  But that he does respond, and hasn't yet ordered me put in a special quiet quilted-walled room in some out of the way facility?  Well, it's life-saving.

But I do violence to him with my words -- you've seen me do the same here, you know what I am capable of, and how I excuse myself by calling it "honesty." 

This is the wound I inflicted yesterday:

Hi MDVIP Go-ToGuy,
I have to thank Nathalie at Dr. G's for suggesting that I try to get you to have more control over the specialists that are handling my care.  They're great, talented, and all have tunnel vision.
This morning I had another experience like the one last Tuesday, a rapid and distressing temperature spike, with dripping sweats and a heart rate ranging from the 50s to 120s -- within a half-hour of doing my first antibiotic infusion of the day.  You'll forgive me, but I had already had 2 Endocet for pain (=650 Tylenol), so I dug up my bottle of ibuprofen and took 800 mg, got in bed under a heavy blanket, and just got through it.
The second infusion -- about 2 hours later -- also brought on a reaction, but a smaller spike.  I hit 102, nothing near the 103.5 from last week, but it felt pretty awful.  This time I added ice packs.
THE PICC LINE IS INFECTED, it has to be.  Both of Dr. B's PAs, Susan and Jacqueline, came to that conclusion last week, but he overruled them, saying that even if it is, the cefepime should "cover" me according to whatever grew in the blood cultures.  It only occurred to me today to wonder if my aortic valve is at risk.  Wouldn't that be a hoot.  But there's no "hardware" in my heart, so blahblahblah!
Outside the semi-crises that occur with infusions and flushing the lines, the rest of the time, I am exhausted, in extreme pain, but forcing myself to be an admirable domestic.
The pain in what-was-formerly-my-shoulder is worse.  Now this could be because I am forcing its use, trying to grow some of that scar tissue that supposedly will one day function like muscle.   But who knows?  The hip pain is now in both, with the right remaining much worse.
The spasms are back, as well as blood sugars that defy logic. That's at 50 units of 70/30 twice a day and sliding scale before meals.
I'm going to put my four years of experience with prosthesis/bone infection to the test, go out on a limb and cry, "infection!"   And my specialists are all going to look at each other but no one is going to look me in the eye.  If this is going to kill me out right, or some complication of it, just tell me  It won't be a shock.
So long as I have an ID doctor who doesn't even check my weekly CBC results -- only blood culture results matter -- and a super shoulder specialist who only looks at... shoulders, etcetera -- I don't have a chance.  Yes, I believe there are some of those nasty bugs in my hips, so making the appts to see Dr. S's team is smart.  But I'm exhausted, depressed, and tired of telling this story to doctors who then look at ME as if I'm crazy.
I can tell you now that he'll order a "tap" of the hip under guided fluoroscope, they won't get anything to work with, and he'll say, "well, everything looks fine..."  I've had 10 taps, without results, that turned out to all be in infected areas.
Speaking of crazy -- I think my brain is infected, or that CRPS is having more of an impact up there than I expected.  For the first 15 minutes or so at the start of every episode of spasm, I am suicidal.  That's not an exaggeration, I am not trying to get attention.  It lasts almost exactly 15 minutes and it is a real struggle.  Then, I cry a bit, and it's gone.  Not the spasms, of course, they hang around for hours!  I use the mantra of "it's only 15 minutes," but one day, that 15 minutes is going to coincide with something else, and that will be that.
I've passed out twice this week, both times during a transfer from bleeping wheelchair to the bed -- if you have to have a brief black out, doing it on the bed is a good choice.  I am trying to drink more, because it's got to be dehydration...
Beyond a puerile "please just make it all stop" request, is there some way to draw up a plan, slow things down?  I always feel like I need ID help right when they have checked off their to-do list of 6 weeks of X and 4 weeks of Y -- because I go by symptoms, and the rousing sense of failure that hits when they say "we're done, call us if you need us!"  Same deal with Dr. D -- now that the shoulder is gone, why should he care that the pain is worse and eerily familiar to earlier pains from infection?  And, trust me, there's no one to call during my 15 minute dalliances with suicide -- or if I did call someone, it would be a CYA response.  Who do I tell that I am just crazy enough to think my brain is infected?
So... when you were signing up hale-and-hearty patients for the preventive medicine you were hoping to practice via MDVIP, you must have rolled your eyes to see that I wanted to tag along, eh?
Ah -- the worst fever symptom of all?  Over 101 degrees and I want all physical issues solved, as of yesterday.  I am also rude, weepy, and annoying, even to myself.  I hope to avoid a hit of spasms with these fever attributes -- I wouldn't be able to find a single reason to justify my existence, not in a mere 15 minutes.  My reason for living is Fred -- not love of Fred or even fondness of Fred -- but the need to be able to leave him a little more money than I have right now, and with organized finances, and a house in good repair.  Otherwise, he will be lost.
So what can my MDVIP Go-To-Guy pull out of his hat to help this mess?  No, thank you, I don't care to speak to a counselor or a psychiatrist -- that detracts from my primary objective of accumulating massive amounts of wealth to bequeath the guy snoozing in front of his computer, oblivious to all...

This time, I thought, I might well get a "cease and desist" courier-delivered letter on fine linen stationery, thanking me for having made his practice so much fun and encouraging me to go spread enjoyment elsewhere.  The main thing, you're just not supposed to use the S-word.  I use it and use it often, as part of my effort to use the most appropriate word for sign/signifier/signified/referent.  I got bit with the Saussure bug.

You Readers are pretty sharp.  You might well have already imagined MDVIP Go-To-Guy's response, which I just got, right in the middle of a weep.

Sorry for the late response. To be honest with you, I read this late last night but was so overwhelmed by the email, I wasn’t sure how to respond. 
Your issues are clearly not simple and this is way out of my expertise.
The only thing I can suggest is that I call and speak with Dr. B myself to get a clearer understanding of what his plan is.
Unfortunately, I am leaving town in the morning for a much needed vacation...
I will try and call him [on my return].

I’m sorry that I cannot give you any better advice than this but I truly have no other ideas of what to do.
In my 23 years of practice, this is clearly nothing I’ve ever dealt with and I must rely on the specialists for advice and guidance.

The office will be open with Dr. K manning the ship in my absence. J will be here.
If you’d prefer to see me for an appt when I return next week, I’m happy to see you.

Like I said, "a prince, a peach, a pear." 

Just being heard, feeling heard, relieves the pressure that threatened to make a protoplasmic mess all over my clean floors.

So I was able to fire off the last word... 

All right, MDVIP Go-To-Guy, I've hit upon a brilliant plan.
You need a vacation (of that I am sure!).  I need a vacation, too.
So I'll make some version of one... maybe do a virtual world tour, immerse myself in the Olympics, remember how to laugh again.  Renew some of the family relationships that oddly seem to start up again after someone dies (very perverse, that).
Maybe I should try doing a good deed now and then.
So... let the vacations begin, PICC lines, and brain dysfunctions be damned!
You are possibly the best doctor around -- but don't get a swelled head.  That's MY purview.
Thank you.

So once I publish this, you will have, and I will have, proof tangible, bolded and in color, that I am far from alone, far from uncared for, and that fighting that 15-minute fight -- for now -- is worth every bit of the effort.

Tuesday, July 24, 2012

"Guess you better slow that Mustang down..."

My fever reached such a pitch that I found myself babbling to Dobby -- as, once again, Dobby was the only living entity williing (even eager, sweet thing) to be with me as I crossed the 102 degree mark.

He likes to hear the story of his birth as I brush his belly.  Don't even try to leave out a part, or his tail starts twitching and he glares.  Should you try to skip over the part where Marmy went to sleep with Dobby only maybe an eighth born, Dobby might gently scratch you or gnaw on your nearest part, in my case, a juicy  thumb.  If you attempt to gloss over his inability to find teat, much less mother's milk, and his early propensity for climbing Marmy in lieu of using her for sustenance, not even a dose of nip will save you.

It was Tuesday, today, infectious disease doods and doodettes day, and I dislike them.  The day, not the doods.  The Tuesdays.

I saw the head honcho ID dood, and that apparently made me forget every question or thing I wished to discuss.  For his part, he had prepared by reviewing all the blood cultures but not the regular lab work.  It wasn't until I got shuffled back to the Infusion Center, where the nurse was giving an inspired rendition of her favorite Zumba workout routine, that I ogled and "oh no-ed" over last week's labs.  She's entertained her captive audience of infected persons, tied to tubing and cuffs, beeping things, before, and usually I don't mind, but today... my head hurt, and my PICC line would not give up any blood, so I was having to sit and wait for this magic roto-rooter stuff to clear the clog. Meaning more shaking, jostling booty Zumba dancing for me.

I first met her last fall, and we went through the whole CRPS explanation and the shoulder situation, and still, today, she likes to punctuate her Zumba Joy by gifting me with little slaps on my left shoulder.  When I ask her to please not touch me, she gives a Zumba Joy Impish Grin and cries, "Why, I guess it's just the nurse in me!" (The desire to touch?)

I should probably call it the body-part-formerly-known-as-shoulder.

Whatever, she is a good nurse but I think something she did today may have triggered this spike.  I think we need to pull this damn PICC line out because it may be the source of the new infection.  After she gave me the clot-busting medicine and so was able to draw labs, I started getting chills, and by the time we got home, I was downright lousy.

Is it crazy to think the PICC line might be infected, even though they've added cefepime?  Two Tuesdays ago, when I got tossed back into Hospital Hilton, I spiked within an hour after doing an infusion.

Okay, I don't have a medical degree, and I know that what looks like cause and effect to a non-sect member makes real medicos chuckle in the dark of night, but come on!

I broke the rules [SURPRISE!] when Tylenol did its usual nothing and dug out my beloved ibuprofen.  I took 600 mg and if I could cross my fingers, oh, sistren and brethren, they'd be so freaking crossed!

I had promised Fred a special tilapia hash stuffed poblano pepper dinner but as he curled up into a blessed nap and I fainted getting out of the wheelchair into bed -- it's San Miguel beer and greek yogurt for everyone!

Feel free to join us.  Dobby's all a-flutter, as he finds poblano peppers pretty tame as far as peppers go, but the dear boy is a yogurt maniac.

When things occasionally really sucked in my life, my Dad used to make me repeat after him that "the sun is still going to come up tomorrow."  How is that comfort, when the evidence screams that tomorrow will be very much like today?

Zumba Nurse was trying, for some reason, to play me her ringtone as I was caterwall-wheeling my way out of the infusion center.  "Mustang Sally."