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.

Antiepileptic Drug Suspected of Causing Psychosis

http://m.brain.oxfordjournals.org/content/early/2016/08/07/brain.aww196

There has been much discussion in the bipolar blogging community regarding the pros and cons of different medications in our treatment regimens.  We wonder whether our symptoms are caused by our brains…or maybe, and this terrifies me…from the drugs we take to pacify our unruly grey matter.

The debate has largely focused on the role of antipsychotics.  Many people find their bipolar symptoms are not controlled by certain drugs: but when they try to discontinue, their symptoms rebound, or they even develop symptoms they didn’t have before, like auditory or other sensory hallucinations, tremors, and so on.

I had been skeptical of the extreme descriptions I’ve been reading, of people literally crippled by psychotic symptoms after even a very slow wean from certain drugs.  After all, how could antipsychotics CAUSE psychosis…could it be, thought I, that these people were simply experiencing a resurgence of their own “native” psychosis upon withdrawal of the “anti”?

This study, which focuses on psychosis caused by, or by withdrawing from, certain antiepileptic drugs, has literally changed my mind.  I’m now thinking about the way the brain is able to change the way it functions in its environment.  We bathe it in a substance; it learns to use and depend upon that substance for everyday function.

Sometimes, in the presence of a substance that is supposed to do one thing, our brain rebels and does something else.

This might explain why a person with temporal lobe epilepsy, as represented in the article, given a certain antiepileptic drug, might go ahead and have sensory hallucinations. 

I’m not going to stop taking my lamotrigine (an antiepileptic), because it really does help me feel better.  But this article did give me pause, since I also have temporal lobe epilepsy that causes sensory hallucinations.

Jeekers crow, I sure don’t want to have my days and nights haunted by the smell of baked goods burning in the oven, which is my main sensory hallucination.  It’s damned hard to sleep when your brain is tugging at you yelling “Get up, asshole, and take those cinnamon buns out of the oven before they’re ruined and the house burns down!”  Never mind that I don’t eat baked goods and don’t even have a house, much less an oven.  Stupid brain just goes on and on. 

Combine that with the constant intrusive music that isn’t there, and the bouts of disabling paranoia…I’ll take my chances with my  L&L cocktail (lithium and lamotrigine).

Just not that other stuff, which you will find in the linked article.  I encourage you to read it for yourself, and please do comment here!  I have some private thoughts, which I’m sure will spill over into the comments somewhere.  But I want to hear what all y’all are thinking about these critical issues of what we are putting into our nervous systems.

How Stigma Compromises My Medical Care

I don’t know what to do.

I can bet that most of you will say, “Just be yourself, Laura.  Fuck ’em if they can’t relate to you as the awesome human being you are.”

Well, yeah.  I appreciate that.

However.

I have this service dog, see, and she’s neither little nor cute.  Well, she’s cute to me, but a 75 pound Belgian Malinois is automatically not cute to most people, especially the uptight assholes that tend to go into “the medical field” these days.  Even my therapist does not think she’s cute.  Even when Atina climbed into her lap and gave her kisses, because she could see that the dear lady was clearly in distress, it did not help.  My poor therapist could do nothing except beg me to get the monster off of her, which I did, and Atina reluctantly obeyed but was still of the opinion that the lady needed her attention.

On the flip side, if Atina perceives that someone is potentially a threat to me, she stations herself sideways in front of me, giving the unsafe party the hard-eye, which is dog language for “come over here and make my day.”

This is why I have a Service Dog:

I have a perfect storm of Asperger Syndrome, PTSD, and Bipolar illness.  My judgement about people is shot to hell.  I lost it on April 22, 1970, the very first Earth Day, when I was drugged, dragged into a dark basement, and brutally robbed of my virginity.  That, and the prolonged months and years of running from one frying pan into another fire, robbed me of my ability to read people’s intentions.  I think it’s because I simply dissociate every time I have to interact with other people.  So now that I’m on the far side of sixty and no longer give a shit, I’ve stopped making myself do painful things, and aside from the inconveniences of not having friends, family, or a partner when I have a medical emergency, I feel much better.

Have you noticed that sometimes your fridge, washing machine, microwave, computer, and automobile all crash at the same time?  So now you have to get a ride to the Big Box store, to the bank to get quarters for the laundromat, and a ride back and forth to the laundromat, to the convenience store for ice until the new fridge comes, and while you’re on the phone with Tech Support your phone is giving your ear a second degree burn and probably giving you brain cancer as well….

This is what I call a Wear Cycle.  When everything wears out at once.  It generally falls out when you’re between jobs, or just before those gift-giving occasions, or your wedding.

So as some of you are aware, I am in the throes of a Wear Cycle of the most annoying sort.  My body is falling apart.  I thought it just needed a tune-up and maybe a brake job, but it turns out to be the transmission, the universal joints, the head gasket; and every time they fix one thing, another one turns up bad.

The result is a seemingly endless procession of doctors, PAs, Nurse Practitioners, lab techs, snotty Front Office People, sadistic MRI techs who put me in Positions Of Stress for upwards of twenty minutes while further damaging my hearing with the various hammerings and clangings of that infernal magnetic tube, being told that I need surgery for this, surgery for that, and they all worry about my blood pressure.  Surely not!

You must understand that my relationship with The Medical Field is a mine field.  The minute I leave my van in the parking lot of the doctors’ building, the hospital, the lab, I dissociate.  I am terrified.

But you’re a doctor, you say.  How could you not be comfortable in this oh-so-familiar milieu?

That’s just it.  I’m all too familiar with it.  I know exactly what goes on behind the scenes, and it disgusted me while I was in it, and it terrifies me now.

Because I am…one of those patients.

You know, the aging female with so many complaints it throws your schedule off, and she’s slight dotty, and might be amusing if you weren’t running so far behind, and of course–of course, she has to be a doctor, at least she says she is, and she does know the lingo…and she has Medicare and doesn’t seem to have a job, so she must be disabled, but for what?  She’s not saying, and if you ask, she’ll say something vague.

I know this, because I’ve been on their side of the white coat.

So imagine what the reaction would be if they walked into the exam room and there I was with my Service Wolf Dog.

The entire visit would revolve around whether the person who Works In The Medical Field was comfortable with the Doggess, and whether she thought they were Safe.

And of course she would pick up on my instant dissociation because I dissociate whenever I run into One Of Those People, because of the abuse I suffered when I was working In The Medical Field, and the abuse I have suffered as a patient dependent upon these people’s power.

And the shame of being disabled, which is, according to the ancient tenets of The Medical Field, weak; and even worse, crazy.

I just rediscovered a former mentor who was hugely influential to me when I was a medical student.  She was my supervisor in the Public Health Clinic.  We became good friends, and she helped me crystallize my medical practice world view, which is based on compassion and empowerment of the patient to take charge of her own health and well-being.

It turns out that this amazing woman had a terrible crisis, which lead to a suicide attempt.

Rather than supporting her and helping her to rebuild her life, the medical establishment brought criminal charges against her for lowering the esteem of the medical profession in the eyes of the public.

They drove her out of the profession.  It didn’t matter to them that this heinous act might push her over that very precipice she had dragged herself back from.

It didn’t matter that they were persecuting one of the finest physicians on the face of the earth, for the crime of being human.

All that mattered was that she had “failed” to complete her suicide.  If she had died, she would have been another tragic physician suicide; but since she managed to survive, she was pronounced a disgrace to the profession.

Fortunately she is a strong and resourceful woman.  She cleaned houses in order to feed her children.  She struggled her way back onto her feet, and reinvented herself.  Blessed be.

So I know very well what the result would be, even if the Doggess didn’t bite the Assistant (you hardly ever get to see The Doctor anymore):  “Did you get a load of that lady with the dog?  What a crock!”

Yes, fuck ’em.  They’ve no right, legally or otherwise, to prevent me from having my dog with me.  She’s Durable Medical Equipment, just like a wheelchair.

The only thing is…being mentally ill automatically discredits anything I say.  I’ve tried it both ways.  And unfortunately, whenever I’m honest and disclose that I have DSM diagnoses, I get my case dismissed.  No contest.  No service.  Goodbye, and put some ice on that.  It will feel better in seven to ten days.  No need for follow-up.

In awful contrast, when I have withheld my diagnoses, it’s all sympathy and MRIs.

Hell, I even got a few tramadol tablets for my torn shoulder, when I begged the doctor because my left wrist is in a brace awaiting surgery and my right shoulder is so painful that I can’t even get out of bed without fainting if I forget and try to push myself up with my right arm.  (How do I get out of bed?  By wriggling on my tummy until my feet touch the floor.)

You think she would have given me that prescription for thirty, no refills, if she knew that I’m bipolar?

Nope.  Bipolar people are categorically drug seekers.  Even though I asked for tramadol and not Percocet.  Drug seeker, no way.

I’m stuck.

I’m terrified of those places, and I need my dog.  But the presence of my dog would set off such alarms in the mind of The Medical Field Person that my actual medical issues would be eclipsed by Prejudice.  Stigma.

If I showed up in an electric wheelchair, they would be all ears.

But a crazy person with a dog?

Postscript

After I wrote my previous blog entry, I let my service dog Atina out to pee and putter around.

Then I felt the scream building up.

Every once in a while, the pressure inside builds and builds, and the only way I can let it out is to scream.  A lot of screams, until my throat is sore, my head is pounding, and I’m too exhausted to scream any more.

But I can’t scream when Atina is with me, in the van.  She already gets concerned when I laugh, because she thinks I’m crying and tries to cover me with her body, which is her way of comforting me.  I like it.

And if I’m in fact crying, she licks away my tears while suffocating me.  She weighs 71 pounds.

So when she was outside, the screams overcame me like a boiling kettle, again, again, again, I couldn’t stop.

Then I heard her barking and scratching frantically at the door.  I stopped screaming and opened the door.

She rushed in and threw herself on me, almost knocking me down.  We clung to each other and she gave little worried yips, stood up and licked my face, and I had to go lie down with her for a while and cuddle till we both felt better and calmed down.

It was a beautiful day, so I figured the best thing we could do was to go for a walk.  As I closed the door of the van, I looked for the scratch marks.

They were right by the door handle.  She had been trying to get the door open, to get to me!

What a precious carrot.

 

When Is Enough Enough?

I lived with my father as he slowly died in increasingly excruciating pain over years and years.  When my mother was home, she forbid him to say, “I hurt,” and she withheld his pain medication “because it made him sleep all the time.”

He slept all the time anyway, because that was the only way he could reduce his pain level.  He groaned in his sleep, though.

Unfortunately, I have inherited the disease that caused his pain: degenerative joint disease, with the added agony of degenerative disc disease.

For the past few weeks the combination of mental and physical pain has me close to the breaking point.  I can’t take opiates because they make me itch, and my skin condition makes it impossible to scratch without tearing off pieces of myself, leaving a wound that takes a month to heal.  In addition, the docs in this part of the country are so afraid of opiates that they refuse to prescribe.  So I’m stuck with using mj, which is somewhat illegal here.  But I have things to do, so I can’t use enough to really relieve the pain, because that would put me in bed.  So I’m screwed.

The psychic pain–there are no words to describe. 

Part of it is endogenous.  Part is environmental–the part of the country I’m stuck in at the moment is grey and damp, two things I can’t stand.  The sun came out for five minutes today and it was balm to my soul.  I’m out of here just as soon as my task is done.

My task is to clean my stuff out of my father’s old studio, where I lived for the last four years of his life.  It took me four days just to clear the spiders out.  Now I’m sorting  through things, making three piles: throw out, because of damage from humidity; give away, because I’m not going to use anymore; keep.

Just to to the situational depression off, Atina is not doing well.  This week her labs were worse.  Her kidneys are getting leakier.  They’re no longer holding her blood proteins in her blood.  They were leaking protein before, but her serum proteins were holding their own; now her kidneys are leaking more than her body can produce to keep up with the loss.

Today we took a short walk in the woods.  It’s been raining for weeks, and since it had stopped this morning (but is back now) I thought it would do us both good to take a walk.  But she wasn’t interested in playing in the creek, and although she carried her ball, she didn’t want to play with it.  And she simply collapsed halfway through where I wanted to go, which is only half a mile on flat ground.  I had to sit down and wait for her to recover.

Now she has fallen off the driver’s seat, which is where she normally sleeps, and is passed out on the floor where she landed.  It looks like she’s nearing the end of her sweet life.

When will my misery end?

I want to stay alive until my son finishes his Ph.D in May.  I want to see him off on the next part of his journey.

He and I have talked about what we lived through with his grandpa, and that I have the same illness, with the added fun of bipolar.  We have had the talk about what will happen when I can’t stand the pain any longer.

It’s one thing to talk about it, and another thing to live it.  I know he’ll survive.  But losing one’s mother is a terrible thing.  And living in agony is a terrible thing.

There will come a tipping point.  I keep on living for others: for my son, for my dog…should I get another dog?  Can I live that long?

In three years my income will be drastically reduced, to the point where I literally can’t live.  I guess that will be the end of the line, if it doesn’t come sooner.

When Does Life Become Unlivable? Thinking of Frida

Dearest Readers, rest your minds, I am not there yet.

Today is rainy and soggy.  The ground is thawing out in our Spring Thaw, which is a prelude to actual Mud Season.  I grew up mostly in New England where there is a time of year called Mud Season, generally starting the end of February and going on and off through March.  It’s a beastly time because everything from horses to tractors–not to mention cars and pickup trucks–gets bogged down in the mud.  You can’t get any “purchase” (traction) because under the foot-and-a-half of mud is the frost line from the winter, which will stay frozen even into May, as any New England gravedigger will tell you.

What this weather means for me is misery.  My hands hurt.  My hips hurt.  My neck is even now packed in pillows so I don’t forget and move it.  Et cetera, ad nauseam.  Oh and my asthma is suffocating me.  Go away, damn it, and let me just LIVE!!!

I saw my orthopedist this morning for another cortisone shot into my right shoulder.  Unlike last time, when the needle slid in so easily I didn’t even feel it, he had to do quite a bit of wudging around till he was able to get the needle into the joint.  It hurt.

I remarked on this, in a casual tone, like this:  “Fuck a duck, Doc, what the hell are trying to do to me???”

Actually I did not frame it in those terms, more because I know that all 6’5″ 300 lb of him are made of good nature and kindness–he and his saintly wife have, on top of their own eight children, adopted eight more, all of them older children who needed a good home.  Even if he wasn’t on the short list for sainthood I would still try to maintain a modicum of dignity and say something more like, “Sonofabitch, Doc, that hurts!”

He grinned and mentioned casually that I am certainly going to need that shoulder operated on at some point, as the joint is proliferating with calcium deposits that will need to be “scraped off” (oh, I don’t like the sound of that!) so they don’t tear up the muscles.

Here my vision goes blank and all I can see is my father lumbering along with his elbows stuck out to the sides like a chimpanzee, because both of his shoulders had frozen up….eventually becoming bone-on-bone.  He was literally stuck, couldn’t do anything with his hands–and he was a ceramic artist.  Hell on Earth.  And it didn’t stop there.  The arthritis ate his spine, just like it’s been slowly but surely eating mine since the 1980’s.

I had emergency surgery on my neck in 1987 for a ruptured disc that was pressing on my spinal cord.  Over the next 3 years I ruptured 4 more.  The spine surgeons proposed installing steel rods on either side of mine spine–no thanks!  I’m a dancer, a horse-and-dog trainer, a hiker, an aspiring Yogini.  A rigid spine does not suit my lifestyle.  So I spent 12 months in a Minerva Jacket, which is a hard plastic shell that the brace shop guy molded directly to my Stockinet encased torso, from just below the armpits to just above the groin, so that I could kind of sit.  It had Velcro fasteners in front.  I was to be encased in this walking tomb for 23 3/4 hours a day–with 15 minutes off to bathe.  I admit that I had to take the damn thing off at night.  Nobody could sleep with that thing cutting into your skin no matter how many layers of cast padding, etc., they fixed up for me to try to make it more comfortable.  I even coaxed the brace shop guy (“You have a perfect hourglass figure…!  He crooned, while I was immobilized in plaster yet again…stupid sod, I thought, only worse) into punching hundreds of 1 cm holes in the thing when it got to be summer and I was overheating in it.

Yah.  I spent that entire year standing up 120 hours a week–my work week–because the tension on my spine from sitting down sent the nerve pain all the way into my feet, and all the way into my hands.  But I soldiered on.  I refused to let the pain stop me.  I was young, and had the iron will that sustains my people.

Look, I follow a lot of people who have it much worse than I do.  Much, much worse.  And they keep right on living, kvetching now and then as is their right.

But I am staring into the face of a dilemma, which is:  I can’t work if I can’t look down.

Say what?

I can’t work if I can’t look down.  Not at my regular streams of income, at any rate.

I had to give up practicing regular medicine, not exclusively because of my brain, which wasn’t doing so well either but got right-side-up very quickly once I got the proper diagnosis and the proper meds, but mostly because my hands gave out due to whatever it is that is eating away at my connective tissue.

So I relied upon my acupuncture training.  Palpating meridians and slipping needles into the right places takes no strength at all.  But damn it, the last few treatments I’ve done, I swear I’ve squawked as much as my client!  I can’t look down without incurring an acute, unremitting ache that spreads into my shoulders and down my arms.  Nerve pain.

Writing.  I don’t sell much yet, but then I haven’t made much of an effort.  I get going with writing and at some point my hands seize up and won’t work at all.  I am experimenting with Dragon Dictate.  It is a pain in the arse, but many people swear by it (I swear at it, cliches be damned!).  I’m starting a proofreading and copyediting business.  That should be a good income stream, if I can market it successfully.  There must be a way to mark-up copy using Dragon or something, right?  At least I can get my computer at eye level.  God, I can’t stop thinking about Frida Kalho.

Money.  At the moment I’m fine.  I made one single good investment in my life, which sustains me now.  That stream of income goes away the moment I turn 65, if I make it that far.  I’m socking away as much as I can, but one little bit of extra expense can throw me seriously in the hole.  It’s unsustainable.  I have to find another way of supporting myself.

This is where the equations meet.  I cannot live as an impoverished cripple.  Please do not play the “Oh, no, you’re going to be just fine” game.  I get that enough from people I live around.

The truth is, I am not and will not be fine.  I have two progressive diseases, and if one doesn’t kill me, the other will make my life a living hell, just as it did to my father.

Dad didn’t want to live like that either, but he got taken by surprise.  It was as if he woke up one morning mostly paralyzed.  He was too bunged up to even take his own life!  So he lived another 5 years in unrelenting pain, totally dependent on the kindness (or unkindness, as the case often was) of others.

When we were alone he would ask me, “How much would it take?”  He was referring to his insulin: how much would it take, to take him out of his misery?  I could not, would not tell him.  He would smile sadly, saying “I know you can’t tell me.”  And we would change the subject.

Gentle readers, there will come a time when those two lines intersect: the downward spiral of my health and productivity, and the linear decline of my ability to sustain myself with food, shelter, medicines, and everything else one needs.

No.  I do not want to enter a nursing facility.  Neither do I want to be dependent on others, which is convenient because there ARE no others to be dependent upon.

I do not want to be locked into a crippled body the way my father was, until he died an excruciating death, screaming out his last hours on earth through blood-filled lungs.

I pray that I will know the right moment.  I pray even more that if there is a Deity, that he/she/it will take me out of this life before I have to make that tough decision.

Pray with me now, dear readers.

Pray that I get to dance at my son’s wedding.

Pray that I get to hold my first grandchild.

Pray that I get to have a sweet, gentle kiss of Death, and go Home before I have to make that tough decision.

Frida’s last diary entry, the night before her not-entirely-accidental death, went something like this:  “I hope my end is joyful, and I hope to God never to return.”

The Honesty Tax Again

Ladies and Gentlemen, gentle readers: I adjure you to tread softly when you review books on any site where books are reviewed.

As most of you know, I am autistic.  I have little to no ability to soft-pedal, and no ability whatsoever to suck up to people, whether they are potential customers for something I might be selling on eBay, or whether they have written a book that has drawn accolades from well-known reviewers.

And so it was that, having bought a book from an online bookseller, having read that book, and having been asked by the bookseller to review it, I did so.

The book didn’t float my boat.  In my opinion, it lacked a good deal.  My review was much more reserved than my full-on opinion, but in the interest of giving the author a break and not putting potential readers off, I went easy.

It seems that my review wounded the author’s feelings, and he sent me a letter.  This surprised me.

I have never considered myself an important writer, and certainly not an important reviewer.

The letter I received from the author of said book made me wonder if I had morphed overnight into some lauded writer, whose “C+” review might actually mean something.

It accused me of everything from sullying the author’s reputation, to negatively affecting his income, to damaging his health.

Good grief!  The next thing, I fear, will be a letter from said author’s attorney, or worse yet, a summons of some kind.

Grief, grief, grief.

The reason I am sitting here in this barn–yes, I do mean barn, literally, not figuratively–is that fourteen years ago, I opened a registered letter.  It informed me that I was being sued for half a million dollars, and that I was summoned to a hearing in a far-away state.  I barely had the means to put beans on top of rice, not to mention traveling!

At that time, gentle readers, I had just lost my job; my child was desperately ill;  and I was already spiraling into the depths of a depression that was resistant to every antidepressant on the market, because it was a Bipolar Depression, which behaves differently from Major Depressive Disorder.  Antidepressants just make things worse.  The specter of ECT loomed on my horizon.  I fought it off with brooms, and cans and cans of Raid™.

That Registered Letter was the straw that catalyzed my first hospitalization.  But that did nothing to avert the rumble of the approaching juggernaut of the pending lawsuit.  Stomp, stomp, stomp, like a bad Japanese movie.  Only this was no movie.

All of the lawyers I contacted said the suit was a frivolous attempt by the plaintiff to gouge money out of hundreds of caregivers, and that I would certainly be exonerated, and could then file a countersuit for damages.The only thing was, the lawyers wanted a retainer of $25,000-$35,000 up front.  And I was penniless.

So I did the only thing I could do: I went bankrupt.  The few things of value I still had to my name went away in one horror-struck day.

I will never forget seeing the repossessors come and haul away the little car that I had used for work and house calls.  My big horse trailer went too.  Anything else of value was carried off in due time.  I was left sitting in a mostly empty single-wide trailer, on land that was thankfully untouchable by the vultures that swirled around my head.

Now that I am in fact homeless, I feel more at ease, because I don’t have anything to steal.  I don’t even have a reputation to feed and care for.  I am Just Me.

I no longer accept registered letters.  If it’s a check from Publisher’s Clearing House for a million dollars, I imagine they might call.  Or maybe not.  What does it matter?

At this point, my energy reserves are at their nadir.  I have just spent nearly four years helping my father to die, in great pain and suffering for both of us.  I’m happy that his suffering is over; and I must say that it is a great relief, as I feel very sure that he is in a good place and out of pain.  But it’s taken an enormous toll on my own resistance to diseases, physical and psychological.

The aforementioned author’s thinly veiled threatening letter has set off a cascade of paranoid thoughts: what would I do if he decided to sue me for….for….um, for honestly reviewing his book?  What has the world come to?

What would I do?

I am weary.  I don’t know how much more I can take.  There are times when I long to go up on some high mountaintop with a fifth of good single-malt, and drink it until I become numb, and let the bitter cold of the night take me Home.

And then I think: how well do I know the evils of this world!  But–what if there really is an Afterlife?  What if there really is a God, who gave us laws?  What if suicide is seen as murder, in that Other World?  Meh.  I just want This World to be over.

I am sick and tired of paying the Honesty Tax.

I wanna go Home.

 

A Disordered Mind

I look around and all I see is clutter.  Unlikely pairings: A glass with dried remnants of good red wine atop a crumby plate that also holds a cast-off case from a long disused (broken) cell phone.  Plastic sacks of clean laundry, some of them from last winter, not yet put away.

Useful, that: the weather is already wintry here, so no need to hunt for the winter clothes.  They’re already in reach.

A microwaveable hot pack draped over a still-unopened bedbug-proof pillow case.  I am phobic about bedbugs, but I have yet to put the protective casings on my bedding, even though I travel frequently to places where there might be bugs.  I’ve had the casings for three years and counting.

It oppresses me.  Why do I let things get this way?  Every time I move into a new place, which is often, I vow that I will turn over a new leaf and keep it clean and tidy.

But I never stay long.  My disordered mind gets to feeling restless, or else some duty calls me away, and I start over…again.

After packing up to leave for new digs, I marvel at the expanse, however small, of clean, dust-free floor and counters.  Why could I not just maintain this mind-soothing order?   Such a balm to the senses, to be able to look around and distinguish individual objects rather than piles, piles, piles of things thrown down, left, tossed away, to be taken care of later, a “later” that never arrives.

I think I was born this way.  My child-room was the same way.  I guarded it fiercely from that hated intruder, my mother.  If she got into my room she threw out my treasures indiscriminately.  I might come home from school to find my room spotless, sterile, bereft of projects in progress that I might have abandoned months ago, but still….I might have finished them, someday, but now they are gone and the potential in my mind’s eye is also gone.

And she dumped out my socks drawer, along with the family of field mice that had taken up residence there.  My pets.

There was never a time when I did not hate my mother.

Perhaps it has to do with the constant acid rain of her curses, name-calling, denigration falling on my infant head.  Maybe the piles of junk started out as a bulwark against her obsession with neatness.  Up your ass with a piece of glass, “Mom.”

I survey the utter chaos in my dwelling of today, every single surface piled with stuff that either needs to be put in some logical orderly place or simply thrown out.  I am not a hoarder.  I just feel paralyzed, looking at all the stuff, and it seems to be looking back at me imploring me to do something about it.  Or at least just to take out the trash…start there.

Sometimes I get the urge to just go out and lock the door and buy a tent.  You can’t stuff much in a tent, can you?

Then there is the mail.  I am paralyzed by the sheer bulk of what appears in both my physical and my email boxes.

I have three or four email accounts that I never even look at.  There is probably something of import, certainly, positively, and possibly some three or four items that might even have some significant impact on my life (license renewal notices, things like that).  But I cannot face the task of cleaning out 999,000+ messages from my Yahoo account.

Then there is my mind.  I have packed a lot of stuff into this finite space, within this bone box.  Yes, of course I have heard the rhetoric about how we only use “x” tiny percentage of our available brain space….and I think that’s bullshit.  The rest of our brain is hard at work backstage, doing stuff that keeps the rest of us running, more or less.  Mine seems to be less, or maybe (more likely) too much.

Sometimes I think that if I could just break out of this 60+ year habit of surrounding myself with chaos, that my mind would work better, that my brain would feel more organized and content.

In fact, I am sure of it.

On the other hand, I think my abnormal unusual mind might have built a fortress around itself, beginning as a very young person, with piles of junk, to protect itself from my mother’s compulsive cleaning and straightening of everything in her environment.

Not to say that my disorderly mind was caused by my mother’s OCD.  No, I believe I was born with this mind, and to tell you the truth, when I am not suffering from the pain it causes me, I enjoy the lightness that allows my brain to fly to places where a more tethered mind could never go.  It is an artist’s brain, and I like it, when it lets go of tormenting me.

I used to make some astonishing art.  I recently saw a set of slides of my art from the ’70’s that must have been a portfolio for getting into one of the three art schools I attended.  I was bowled over by the beauty and quality of my own work.

What happened to that?  Where did it go?  I can pick up a pen or some colored pencils, even now, and make a piece of art that would look good on any gallery wall.  Yet I don’t have the urge, the drive, to do it.  It’s lying in the pile of unused talents and vocations, over there in the middle of the floor, where I have to walk around it to avoid tripping.

My music has gone to hell because of the inflammation in my hands.  I can still sing, but I am afraid to, because I might lose that too, and so I actually do lose it because I don’t use it.  Or to tell you the truth, I forget to sing.  How strange.

I forget to listen to music, except for Pandora, because I just, I just….forget.  So except when I am finally doing the dishes and really need something to distract my mind so I can keep on task (oh God….how strange….), my environment is silent except for the background noises, the furnace, the honk and wail of the railroad trains (how I hate these shrieking interruptions in my silence), the mumbling roar of the river after a big rain.

My shrink is sure I have ADD.  He pushes stimulants.  I try them.  They make me feel creepy, and they don’t help.

I know I don’t have ADD.  I have something far deeper.  I have a Disorganized, Dis-Ordered Mind.  I don’t think there’s a cure for that.

Don’t.

Don’t tell me about DBT, CBT, LMNOP.  I’ve done those.  They are interesting, and they help me to understand that Joe Shmoe might just be having a bad day that I was not the cause of.

But they don’t fix my disordered, disorderly brain.

 

My Magic Wand

When I was in active Pediatrics practice, anxious parents used to ask me all the time, “When will this get better?  Will it get worse?  Can you make it go away?”  This, usually in reference to some unpleasant chronic condition like asthma or psoriasis.  My answer to them was always the same:

My Magic Wand is in the shop with my Crystal Ball.”

This usually provoked a crestfallen look.  But I do not lie, I do not dissemble.  I tell the truth even when it is not what anyone wants to hear:

“Your child has leukemia.”

“Your child has meningitis (because you staunchly refused to give him the vaccination against that--but I would never say that.  They will either figure it out or not, but I will not increase the suffering of an already stricken parent.)”

“Although we did everything in our power, we were not able to save your child.”  That was the worst, the one I dreaded the most.  Where there is life, there is hope, is a true statement.  There are conditions which are dangerous, which are usually fatal, but where there is life, there is hope.

But the outcome, in the end, is not in my hands and I cannot foresee the future: my magic wand is in the shop with my crystal ball.

And now that I am the patient, I juggle these things.  Some things about my diseases can be predicted, and some can’t.  I think sometimes the most distressing part of having a disease is the uncertainty of how it will turn out.

Take Ebola, for instance.  The media has whipped the fear-and-paranoia quotient to the moon.  People are starting to fear each other on the streets.  There is talk of people wearing masks in public places, even though it has been proven that in order to pass the virus via the respiratory route, like a sneeze or a cough, someone would have to be so sick that they would be on life support anyway, not likely to be in the subway station or the mall.

Will the virus take hold in other nations, or will it peter out the way Bird Flu did, the way the previous Ebola outbreak did?

Sorry folks, my magic wand is in the shop with my crystal ball.

I am fortunate to live in two countries where one is relatively free to chose one’s own doctors, for many things, anyway, if one’s health plan permits.  If I don’t like my doctor, I simply fire them and get another one.

Very fortunately, my shrink in America, whom I have been in a cordial therapeutic relationship with on and off since 2001, is a funny, pragmatic man, who is just as likely to say “I don’t know” as he is to say “Hello, how are you?”  –which he says in a jovial yet businesslike manner, because he REALLY wants to know how you are.

Thirty minutes later I leave his office both confident and perplexed, which is the way he means for me to feel.  I am not sure our plan of treatment will work.  Neither is he.  His magic wand is in the shop with his crystal ball.

He must be in cahoots with my therapist, whose office is just the other side of his wall.  I give her a hard time, saying, “I could do your job right now.  Right now!  All I would have to do is rotate the following exclamations:  “Really?  No!  You HAVE to be kidding. [silence]”  She did not quite find that funny, but I did and that’s what’s important, especially if your DSM diagnosis was changed, without your permission, from Asperger Syndrome to Autistic Spectrum Disorder NOS.

But in reality she is a really good therapist, because she does indeed give me both space and support, and cognitive feedback, which I truly appreciate.

She DOES have a magic wand in her office, but it’s one of those fake ones, you know what I mean, with some kind of thick fluid and glitter than flutters down through it when you upend it.  But crystal ball, no, she leaves that part up to me.

My family doc in Israel is a one-of-a-kind gem.  He listens to me; he is open-minded yet erudite, and he most certainly owns neither magic wand nor crystal ball, and if he did he would have to lock them away from his kids.

Now.  I want you to know that luck played very little part in my finding my Medical Knights and Ladies.  I fired many a therapist, and several psychiatrists, before I happened upon the ones I have.

The position of Primary Care Physician in America is still open.

My psychiatrist in Israel, bless his heart, had a severe psychotic episode and had to be hospitalized, and I don’t think he’s practicing anymore.  I hope not.

Far be it from me to be anti a mentally ill psychiatrist; my shrink here has Major Depressive Disorder, and he knows how it hurts.

But my Israeli shrink started showing signs of paranoid psychosis while I was in his office, which was in a basement room with no windows and you had to be buzzed both in AND out.  Oh dear.  Nothing short of Magic Wand was going to help him, poor man.  He was kind enough to renew my prescriptions for three months, giving me time to find out there wasn’t anyone else on my health plan who speaks English.

All of this is to say:  We just don’t know.  We don’t know what will happen to us in the next moment, let alone days, weeks, months, or years.

I was in a traffic jam going up a steep hill on a two-lane road once.  When traffic finally got moving it became clear that a huge tree, its roots sodden with the torrential Monsoon rains, had fallen atop a Jeep, crushing both it and its occupant.  She died instantly.

After watching my father wither slowly away over years, months, weeks, days, and moments, it was hammered home to me: I don’t have a crystal ball, and I certainly don’t have a magic wand.  But I want that lady’s tree-falling-on-vehicle sudden death.  I don’t want to fade slowly into more and more and more pain, up till the very last breath.  If only I could have that crystal ball, to see my death, and that magic wand to change it, if it isn’t one I can live with.

Today Is Another Day: Rapid Cycling

As you may remember, yesterday I was painting my toenails in the middle of the night.

Alas, that was not to last.  I woke up this morning with a feeling of dread in the pit of my stomach.

After I finally went to sleep last night, with the aid of more Seroquel, I woke up a bunch of times because my arms were numb and tingling.

Fuck, you know, this has been going on in one form or another for several years.   I’ve been writing it off as probably due to my arthritic collar bone, but this is different.

My medical experience gives me all kinds of terrible fears.  MS is the main one these days.

I remember the day in medical school when they taught us all the bad things that can possibly happen to breasts.

My then-husband came home to find me huddled in the bed hysterically crying.

“What’s wrong?” he asks.

“My breasts!  They’re a ticking time bomb!  I want them off right now!”

“There there,” he said, not knowing what else to say.

The next day I ran to the Student Gynecology Service to get a pre-operative exam.  The kind Nurse Midwife examined me and assured me that at the moment my breasts were not explosive, and offered to re-check them whenever I started feeling breast-anxious.

I felt rather foolish, but relieved that at the age of 29, nothing was wrong with my breasts.

Why do I make these digressions when I’m depressed?

Maybe it’s because I don’t really want to engage with the depression.  I know it will pass, and something else will take its place, but when it’s on me, it’s literally on me, and all over me, and in me, and I can’t shake it off.  All that happens is I start crying and feeling like someone is trying to rip out my guts, and doing a pretty good job at it.

Then it passes, just as quickly as it came.  What follows might be a period of “normality,” meaning, neither hot nor cold, and this is heavenly.  But it never lasts.

Hypomania, or frank mania with psychosis, tends to raise its ugly head at night, about bedtime; which for me is at 9 pm because my meds take 12 hours to wear off.  Actually they take 13 hours, but that is an embarrassing amount of time to sleep, so I actually set an alarm for 9 am.

I can tell the (hypo)mania is on its way because my bedtime knockout cocktail doesn’t do a thing.  I’m awake playing Solitaire on my iPad, which usually bores me to sleep, except now I’m totally awake: uncomfortable in my skin, twitching, restless.  I don’t want to look up because sometimes my wallpaper turns into ugly faces.

I follow the protocol my shrink and I developed for these very occasions: more Seroquel.  Another 50 mg till it knocks me out.  And a double dose of my benzos for good measure.

Sometimes it takes a couple hundred more milligrams of Seroquel to do the job.  I have an incredibly low tolerance for Seroquel, so my maintenance dose is only 100 mg.  I know, I know, some of you take 600-800.  That would put me to sleep for several days.  I usually get to 300 before it’s knock-down time.

The good thing about hypo/mania is that it can be controlled, if recognized early enough.  Depression, though…that’s another beast.

Bipolar depression is different from “regular” depression for reasons I don’t know.  I was treated with regular antidepressants for years, and was pretty much suicidally depressed the whole time.  Vitamins “L” (Lithium and Lamictal) saved my life, quite literally.  Blessings upon the quirky head of my neuropsychiatrist, who was on call when I was hospitalized the first time, and got my bipolar figured out.

The only adjustment we can do for the depression part of the roller-coaster is to up the Lamictal by 50 mg, which puts me at 200.  More than that pops me over into mania.  It’s a delicate balance, as you can see.

So the only thing I can really do with this depression is to wait it out.  Sometimes it does get suicidally bad, and then I have to think about my dog and my son, and what my suicide would mean for them.

I put them in that order, because my dog is helpless without me (although yes, I could put her in Rescue, but that thought makes me cry harder) and my son second, because even though it would tear him to pieces, he is at least able to provide for himself, unlike my dog.  I know that makes no sense but that is how it happens to fall out in my brain.

I’m starting to feel tired now, which means this part of the wave is coming to a close–I don’t know exactly when–and what happens next I cannot guess.