New Black Box Warnings: FDA

I have a hell of a toothache.  A couple of months ago I broke a tooth, and went to a franchise-type dentist who took emergency cases.  One of the down sides of being a professional vagrant is I don’t have a regular dentist. 

For a little over $1000 I walked out with a new crown and instructions to call if I had any problems.

I did have a problem, before I even left the office.

I felt that I should have had a root canal before the crown went on.  I know my teeth.  They are ornery, pesky things.  They operate in strict accordance with Murphy’s Law:  anything that can go wrong, will go wrong. 

The dentist assured me that the nerve looked fine, and he hated to mess up a basically healthy tooth.

A couple days later, the thing started hurting like a sonovabitch.  I called the dentist, who immediately assumed I was a drug seeker and blew me off, saying that it might take a few weeks to settle down.

It hasn’t.  In fact, it’s getting worse.  Now I have to look for a dentist who will…but wait, it’s Labor Day Weekend!  No dentist till next week, when I have to run up to Michigan to get some warrantee work done on the old brand new RV.  Maybe I’ll find a dentist there, with a lot of luck.

So, in order to buy some time and have at least a few hours out of misery, I took two of my hoarded tramadol tabs.  Now I have maybe 20 left.

Then I opened my email, to find a bulletin regarding a new FDA policy, intended to protect ourselves from ourselves:  black box warnings on both opioids and benzodiazepines, warning that they must not…Black Box MUST NOT…be taken together, because of the potential of respiratory depression leading to death.

A Black Box warning is the strongest labeling there is.  This means that in a time when even being prescribed pain medicine is becoming a remote possibility, those of us who take benzos for anxiety disorders and/or movement disorders, seizure disorders, or insomnia, will have an even more difficult time obtaining effective pain management.  Doctors who prescribe both meds at the same time will open themselves up for censure and lawsuits.  Pharmacists are being given increasing power to simply refuse to fill prescriptions.  They don’t have to, and if the FDA issues black box warnings, they are fully within their rights to refuse to fill prescription A if the patient is known to be taking prescription B.  In fact, if they do fill it and the patient has an adverse effect, the pharmacist is liable, can lose their license, and can be sued.

This is of direct concern to me.  My neurosychiatrist, who unfortunately has retired due to failed back surgery, hammered out a drug cocktail during the course of our 12 year clinical relationship, that effectively treats my bipolar, PTSD, and social phobia.  It includes 3 types of benzos.  All at once.

It also helps with the muscle spasms that cripple me day and night.

Now I fear that when my prescriptions run low, I won’t be able to find anyone to prescribe these lifesaving medicines because they are “too much.”

Worse, the degeneration of my spine is getting to a critical point.  One of the bones in my neck is rotating in such a way that it is pressing against my spinal cord.  I’m going to need surgery soon.  Major surgery, to fuse three of my cervical vertebrae and lift them up off the nerves they’re pressing on.

I won’t describe the surgery, because it makes me sick even to think about it.  I’ll just say that it involves lots of chopping up bone and remodeling.  Very, very painful stuff.

So…in today’s anti-pain med climate, what’ll it be?  Black Box Warning ahead!  Do I get to continue my benzo regimen so I can maintain a semblance of normalcy, and not be a hypervigilant mess, or do I get a modicum of pain relief after having this spinal carpentry fest?  Do I have any say in this matter?

Last time I had spine surgery, I got sent home with zero pain meds.  None.  And that was in 1987!

Why on earth did this happen?

Because I happened to joke to the pre-op nurse who was taking down my then very short med list (one med!) that I took Xanax for the three days before my periods, and that I was addicted to not having PMS.  She wrote down that I was addicted to Xanax!  It was recorded in my chart that I had admitted to being a drug addict.  So when I called the hospital to ask for some kind of postoperative pain relief, the neurosurgery intern scolded me about being a drug addict seeking drugs.  No pain meds.  And that was a relatively minor procedure, compared to the one I’m facing.

I really don’t know what to do.  Sometimes I wish I’d just die in my sleep, so I wouldn’t have to face this surgery and the prospect of being helpless, in agony, without the possibility of comfort.

I Got Carded!

And the good news is, I got carded for the first time in 32 years.

The State of Arizona, otherwise notable for refusing Daylight Savings Time, and for the Grand Canyon, and Tombstone, and Prescott, all splendid ideas–has seen fit to award me my Medical Marijuana card even though I’m not **yet** an official resident.

I think they took pity upon my sorry ass.

And they knew I needed it, because I am in a world of hurt.

My appointment with the Hand Surgeon arrived today.  I got to wait two hours, then saw his PA, who had filthy fingernails.

I find that utterly repulsive.  A health care practitioner MUST have clean fingernails.  Hell, I’m sure Doc Holliday had clean fingernails, even though he was a drunk, a gambler, and a sometime outlaw.

I even clean my own fingernails before I go to a doctor appointment.  When I was in practice, I not only cleaned them every morning before heading to the office, but also used a white nail pencil (which I have not seen in stores for years) under the tips, to clean them further and make them shine.

The PA was not in my life for long, however, as she took immediate note of the way I flinched and yelled “Ouch!” when she pressed on the place where it hurts.  I made it easy for her by showing her the place.

She left the room and returned with the actual hand surgeon, a very nice young man.  He extended his hand, I rose from my chair and shook it, we introduced ourselves by our first names, and he complimented my last hand surgeon on his fine handiwork and inquired how it was done.

“Pins,” I told him.  “He pinned the hell out of those little bones and told me never to move my wrist again.”

He laughed.  But that is true. 

Of course the surgeon had to manipulate my wrist some, just to get his own idea of what is fucked up wrong, so hours later the bitch is still throbbing.

Predictably, he ordered an MRI.  As a bonus, we’re going to have an arthrogram with our MRI.  Half an hour prior to the scan, he will inject some contrast material into my wrist joint, and the MRI will show where the stuff goes.  This will clarify what is ruptured.  I think I know.  I’d make a bet with my doc, but I think we’re both on the same team.

So, after getting all the paperwork done I walked out to the parking lot, stuffing down a scream, and let the Biggess Doggess out to pee.

Aha, there is my phone!  I knew I left it somewhere.

Three messages from the spine institute in Denver (thank you, friend who suggested this!).  Two of their spine surgeons have reviewed the imaging studies I sent them, and both are of the opinion that I need “decompression and fusion at two levels (of my neck)”, just the same as the spine surgeon here in Flagstaff. 

I guess I will be having a busy spring.

It’s hard to do this kind of shit all by myself.  I wish I had the money for hotel rooms and private duty nurses.  I don’t, so there will be some sort of arrangement with hospital security so I can stay in my van in the hospital parking lot for the hand surgery.  The spine surgery recovery will have to be in some rehab facility, ick.  And poor Atina will have her first boarding experience.  Ever since I’ve had her, she’s been with me every single night, even after her own major surgeries.  It will seem really strange not to have her with me, but since I won’t be able to care for her, I guess that’s how it has to be.

It was getting late by this time, so I drove back to the campground, still suppressing screams.  It upsets Atina terribly when I scream.  So I rubbed her head and ears all the way back, driving with my solidly braced up bad hand.  One thing about having a lot of orthopedic injuries, you get pretty good at bracing and splinting, and at driving with one hand.

Back at the old campground, I rummaged in my stash bag and found a strain of legal (I have my card, remember) cannabis called Blueberry Trinity, which I imagine might be named for the “Trinity” nuclear fission experiments.  Whatever.  I inhaled its vapors, then set to work on a few shots of whiskey.  No, not the best coping mechanisms.  Fuck a bunch of coping mechanisms.  I needed oblivion.

The phone rang.

It was my old boyfriend and now for 18 years telephone friend Dick!  That’s not his actual name, but I know he won’t mind.  I spilled my guts to him, which was just what I needed.  He must have got “the vibe” that I needed help!  We talked all the way through his dinner.  His wife put up with it gracefully.  She is a graceful person, and I’m very glad they have each other.

Now the intoxicants have pretty much worn off.  It’s time for Atina and I to take our pills and go to sleep.  She’s lying up against me, upside down.  I’m intermittently rubbing her tummy.  Guess I’d better take her out for the last pee of the day, and call it a night.

Realization

This sudden and alarming loss of strength and control of my limbs, and even unsteady gait, combined with extreme discomfort in my neck and sometimes lower back, has me wondering what the next step might truly be.

I devoted all of today in researching what I have, and to my great surprise I emerged from the rabbit hole with a rabbit.

The rabbit has a name: Ehlos-Danlos syndrome, or EDS.  I arrived at this by filling out some standard forms that rheumatologists utilize, and found myself right in there amongst ’em.

This explains the extreme paper thin skin that tears if you use any kind of tape, Tegaderm, anything.  It tears off in sheets, splitting just at the level where the pain nerves are, and the wounds take weeks to months to heal, leaving horrid scars.  I have several scars from blood draw needle sticks that make me look like an effin junkie.

Speaking of which, I would fail terribly at being a junkie, because my veins have become fragile, like my skin.  IVs last minutes, if the nurse can even find a likely looking vein.

“That one is blocked from a previous disaster,”  I remark, and move my arm so that she’s not tempted to, “Well, that doesn’t matter, what YOU say.  Just watch me!”  Uh, no.

“That one has a valve in it (which makes them either clot or blow up)….”  “Tsk!” She runs her finger along the vein, watching it collapse and fill again.  OK, score one for the annoying patient!

“That one rolls terribly,” I observe.  “It’s good to hold it in two places so it won’t try to get away from you:-D” humor is always good, yes?

She snorts, throws down her nitrile gloves, and stomps off muttering about sending someone else in, this is over her head.  Well done.

Then there are the veins themselves.  I do not know how, first of all, how vascular access could be accomplished, for purposes of surgery.  And I am not at all sure of the wisdom of pushing and pulling at structures like the arteries in my spinal column, or even my jugular vein and carotid artery.  I don’t want a stroke from a leaky artery or a blood clot from a stressed out vein. 

So that leaves the question: am I even a surgical candidate?  And if not, what can be done to keep me walking and talking and writing on this touchscreen with one finger?

As I was wrestling with my nightgown it occurred to me:

My goal is to learn my deepest essence.  I like who I have turned out to be, with some notable exceptions. 

And I’d like to devote time to really listening deeply, and having understanding of the spirit that was injected into this crumbling body.

If I can understand that, it will help me to manage the coming events, whatever they turn out to be.

Biblical Surgery; or, The First Jewish Doctor

I want you to know that the “Jewish Doctor” part is pure tongue-in-cheek.   G-d is not Jewish.  He’s for everyone!

That said, if you look into Genesis 2:7-8, you will see an amazing thing:

“And the LORD GOD formed the man, dust from the earth;

Va’yi-PACH beh’ah-PAV nish-MAT chayYIM va’ya-HEE ha’aDAM le’NEFESH chay-YAH

And He breathed into his mouth the Spirit of Life and the Man became a Living Being.”

I’ve transliterated the Hebrew here, because if you read it through a couple of times you will see that it has the actual rhythm of breathing!

What are we seeing here?

“And He breathed into his mouth the Spirit of Life…”

The very first CPR!  Divine CPR!  The Breath of Life!

In fact, in Hebrew, the word for soul is neSHAmah, and the word for breath is neshiMAH!  It is the breath that keeps us alive, and it is the Divine Breath that gives life to the First Human.

Not that the world wasn’t populated with tons of living beings already.  This Divine CPR happened on the Sixth Day of Creation, after everything else was ready and in place for the final touch: Man.

But whoops, there was something missing!  In Gen. 13:18 G-d notices that the Man is lonely: every other creature has a mate, but not Adam.  (Adam is one of the Hebrew words for “man” or “person”.)  So G-d says, “It’s not good for the Man to be alone; I will make him a helper against him.”

Huh?  Helper against him?  What is that supposed to mean?

There are multiple ways to interpret this phrase.  Marriage, as we know, is very complex.  At best, the partners have each other’s backs: they are holding each other up, leaning on each other: they are against each other, giving support.

On another level, they challenge each other, ideally bringing out the best in each other, like good sparring partners.  They are not out to hurt each other, but to energize one another.  Have you ever had a partner who gave in to everything you pushed for, who buckled under adversity?  Yech.  I want a partner who is able to push back when I push, not to shove me away, but to challenge me to grow as a person.  This is a helper against me.

So the very next thing G-d does, in verse 19, is to bring all the birds and beasts to Adam, and ask him to give them all names.  Now, we Hebrews believe that names have very special powers: the name is the essence.  So when parents name a baby, they are temporarily imbued with Divine Insight, to know the child’s soul and intuit the child’s real name.

So it says in the verse, “And the LORD GOD formed from the earth every beast of the field and every bird of the heavens, and He brought them to the Man to see what he [the Man] would call them; and what ever the Man called each living creature, that was its name.”

Now, the Jewish Bible has four levels of interpretation: 1)literal, 2)giving a hint that something is hidden there, 3) explication, 4)hidden knowledge.  And for each level, there are miles and miles of commentaries.  I am going to skim over two layers of commentary here, exploring what this business of naming might be about.

The juxtaposition of G-d musing over the idea of giving Adam a mate, with having Adam name all the creatures, is a hint that in order to name something, Adam had to know that creature intimately.  But wait!  Doesn’t intimate knowledge….knowledge in the Biblical sense, as in “Adam knew his wife and she conceived”….could it be that…..?  Some Kabbalistic sources say yes!  Adam was looking for his mate, as is supported by verse 20, “…he gave names to all the beasts, and the birds of the heavens, and all the creatures of the fields, but for the Man he didn’t find his helper against him.”

So some sources say that Adam “tried out” every creature in the literal sense, but did not find his mate among them.

But there is a higher (and more palatable) interpretation of the expression “to know intimately.”  It is that in order to really know someone, you have to be so empathetic that you actually come to know their inner soul.  In fact, it’s as if you are that person, for a time.  You’re really “walking in their shoes.”  And that, says the Zohar, which is the core text of all Kabbalistic knowledge, is what Adam was really doing.  He was melding souls with every creature so that he could intimately know its essence, in order to know what its true name should be.

Now, having been one with all the creatures of the earth (kind of like a Vulcan mind-meld), and not finding his own mate, G-d had another solution, in verse 21-22: “And the LORD GOD cast a tar-DEH-mah** (deep sleep) over the Man and he slept, and He took one of his ribs, and he closed the flesh where it had been. And the LORD GOD built the Woman out of the rib that He took from the Man, and brought her to the Man.  And the Man said, This One is bone of my bone and flesh of my flesh.”

The first surgery.  

What’s going on here?  If G-d is all-powerful, etc, etc, why couldn’t He just create a First Woman for the First Man?  Why did He have to take a chunk out of the Man?  And why on Earth did He put the Man under general anesthesia first, when He could have just **whack** taken out the rib and closed the wound and that was that?

Did G-d just want to be the Primordial Anesthesiologist?  He already knew CPR, so why not?

Stay tuned…..

**The word “tardemah” is still in use in modern Hebrew.  It means “anesthesia,” of course!