Paging Dr. Van Winkle

When was the last time you woke up and realized you’d been a drugged zombie for 17 years?

That happened to me.  This month: May, 2017, I went through what is, I hope, my last withdrawal from psychiatric drugs.  (I remain on lithium, which is killing my kidneys slowly, but I need it, at least for now.)

And now I’m me again.  But who the hell is “me,” and what am I supposed to do?  Having been disabled by my various chronic conditions, multiplied by the even more profound disability of the drugs that were supposed to help me function, yet enveloped me in such a cloud of grey fuzz that I was insulated from both my environment and myself, I awake to find a gulf spread out between myself now and myself in the past, with no way to possibly bridge it.  17 years.

If it had not been for the drugs themselves doing what drugs do (side effects and adverse reactions), I’d still be moving about in a sea of brain fuzz.  I had no notion of stopping them on my own.  The opposite!  I was convinced that it was only those drugs that prevented me from the inevitability of suicide.  But even before I began getting serious side effects that contraindicated the antipsychotics and antiepileptics, I had started to sow the seeds for what would serendipitously become the replacement for not just one, but seven, psychoactive drugs, plus a prescription antiinflammatory.

I started taking cannabinoids as pain medicine.  Following a protocol hybridized from several in use, I began a scheduled dosage of cannabidiol (CBD), along with microdoses of THC.   I started this in the fall of 2016, and the pain relief has been superior to anything else, with minimal negative side effects and a whole load of positive ones.

When my antipsychotics began to cause extreme muscle twitching and movement disorder, I thought for sure I was doomed, because I really had benefited from their help.   The combination of brain without quetiapine and brain in withdrawal from same really did haul me to the brink.  And that was before I ever thought of cannabis.

Fortunately I had plenty of benzos to blunt the crash, but I’ve always been very careful not to get hooked on the benzos….and actually didn’t, despite being on them nightly since 1989.  More about benzos shortly.

The next to go was my darling lamotrigine.  Now, modern neuroscience tells us that bipolar disorder shares features with seizure disorders: there is a type of “kindling” that begins as a misfiring somewhere in the brain, which can then spread to other parts and finally, if that process is not interrupted somehow, involves the entire brain, causing an acute episode.  Medication and other treatments can stop this from happening, or at least blunt the reaction (note: CBD is shaping up to be a very effective antiseizure medicine, as proven in study after study).  Since antiepileptics help in bipolar disorder, that adds weight to the hypothesis that bipolar shares features with epilepsy.  Clearly, I did not want to stop my lamotrigine; but I developed the most feared side effect: toxic epidermal necrolysis.  This causes the layers of one’s skin and mucous membranes to separate and slough off, like a second degree burn.  It is incredibly painful and can be life threatening.  Fortunately mine didn’t get that far, but it was terrifying.  Bye-bye, lamotrigine!

I waited for the backlash after quitting lamotrigine, but none came.  By that time I was slamming the CBD every four hours, for a nasty episode of spine arthritis pain.  Either I had suddenly stopped needing antiseizure meds, or…wait….I was taking them–just a different one, for which my body has actual receptors: CBD, which activates CB1 receptors in the brain.

The winter wore on, and I found it necessary to have my injured left wrist operated on for the 4th time.  Even though that’s not a huge surgery, there would be pain afterwards, and if I hoped to receive any opioid pain medication, the benzos might have to go.  I decided to taper over six weeks, which is very rapid for benzodiazepines.  These drugs, which have helped me and many others immensely, are very hard to get off of.  Our bodies love what they do.

I was also taking Zolpidem, a sleeping pill that works on similar receptors to benzos.  In effect, I was taking two different benzos!  That had to stop.  And if that weren’t enough, I had a third benzo that I took when my PTSD broke through: clonazepam.  Three different types of benzodiazepines.

It wasn’t as hard as I expected.  The CBD stepped right in behind the benzos, and now that’s what I use.  The benzos didn’t make me stop having PTSD.  They helped me sleep and function a bit better in everyday life.  CBD does that too, and I feel like I’ve walked out of a wall of fog.

Along the way I got rid of the gabapentin (prescribed for neuropathic pain: THC works much better), and the celecoxib, which is supposed to be for pain/inflammation, but CBD/THC combinations work worlds better and cost much less.

Yes, medical marijuana is costing me much less than the copays for my prescription drugs, which at one point were close to $500 a month– with Medicare!  My oils, tinctures, and herbs are now costing me less than $200/mo.  Soon I hope to grow my own, which will cost even less and I’ll be able to grow organically.  I’ve substituted one botanical for eight pharmaceuticals.  Hmm, no wonder Big Pharma is all about patenting those cannabinoid analog drugs and suppressing the medical marijuana movement!

I feel like someone who has been sucked up by a vacuum and plopped down somewhere entirely different.  I can see where I was at the beginning, and I see where I am now; but the ground I have traveled is invisible.  It is a chasm.  I am no longer who I was then, and no longer who I was along the journey.

Fine, you say.  Congratulations!  But it’s not so simple.

You see, I became disabled from working at any job whatsoever on 4/4/2000.  Since that day I have maintained my medical license and all its requirements.  I tried to go back to work a couple of years after my breakdown, only to find that the system has quirks in it that do not include doctors with bipolar disorder.  I was trapped being sick.

I did do a few miscellaneous things with my time, but between my physical illness and my brain and its special disabling brain-drugs, I was trapped into being a sick person.

I have always felt that the brain part was the limiting part, since people manage to continue to work with all manner of disabilities, up to the point where the body simply puts on the brakes– like, for instance, the years I have spent on the toilet.  Or the years without use of my hands, due to joints falling apart and needing surgery.  Or the vexing problem of not being able to look up, down, left, or right, due to neck arthritis.

With my head out of the fog, I’m looking into the future.  It looks awfully scary.  I used to not care about the future, because I was certain of dying from one thing or another before I got there.  Now I’m not so sure, given the salutary response to cannabinoid therapy, that I won’t have a shot at another decade or so.

Problem is, I won’t be able to afford to live.  I have private disability insurance that will (if they don’t find a way to screw me out of it) continue till age 65, which is another year and a half.  After that, it’s Social Security, if there still is such a thing by then.  And although I’ve saved aggressively, I don’t have enough to even remotely get by.  And, lamentably, I don’t think I will be magically all better by then.  My skeleton will still be a wreck, and my guts will likely still be a-bleedin’.  I won’t be able to work at Wal-Mart, unless they have a back office with a bathroom.  

It’s a great grief to look back over that 17 year chasm, back to myself doing my doctor thing, the life I loved.  Now I’m just an aging sick person, soon to be an aged sick person living in poverty.  This was not what I requisitioned.  I did not work three jobs to put myself through The University of Chicago, to end up as one of the underhoused/homeless seniors I meet on the road.  I did not work my way through medical school and graduate school so that I could live the rest of my life disabled.  I did not work 120+ hours/week for three years of residency, only to become a patient myself, with nothing to show for my passion.

It’s tempting to throw in the towel, seeing what a colossal waste my life has turned out to be.  But not yet: I have time.  There’s always death waiting.  I want to see what’s out there, at least until my next surgery.  A joint replacement, and I don’t mean that kind of joint!

At least maybe then I’ll be able to play my banjo.  That really was the last straw with the “god” thing: taking away my hands.  If that very god looked upon me as I played, clinging to that banjo for very life during the hard times–since the moment I first picked up a banjo at age 19, it has been my comfort, my solace, and my joy where there was none before.  And my prayer, my meditation, my chant.  So if then there was some god watching as I played, and it decided to afflict my hands and take my one direct line to joy away, then I say….shame!  For tormenting the tormented.  

At least if I get a new wrist and can make it work, then I can sit and play and people will throw money.  I’ll be grateful.

Night on the Rack

Sleep is supposed to be restorative, or so we are taught.

Last night proved anything but.  I lost count of the awakenings occasioned by the loud complaints of various joints and their wounds. 

At 0230 I arose and rummaged through my bandage box, half asleep but unable to finish the job because of the excruciating hypersensitivity of the skin overlying the destruction in my wrist.  It feels like a remake of the RSD from 30 years ago…can that be?  I don’t know, but it is so stupidly sensitive that the mere touch of my well-padded wrist brace feels like liquid fire.  That’s what RSD feels like.

In between excursions to the bathroom and to the bandage box for a piece of biogel to put over my wrist bone, my night was spent in my mind’s idea of a torture chamber.

The scene:  I am conscious that I have been brought to this torture chamber to be “interrogated.”  I have no idea why.  The torturer is probing my mind for vulnerabilities.  At the same time, I am probing my mind for strengths and strategies for survival of what looks to be a prolonged ordeal.  I have no facts to give up, no-one to betray except my own autonomy.  

For that’s what’s at stake, isn’t it?  That’s the thing we, or I for one, most fear losing: autonomy, self-determination.  Aside from mobility and self-expression, that’s what I stand to lose from prolonged torture.

He is sizing me up.  He’s making pleasantries.  I play along, playing for time.  I know he knows that’s what I’m doing.  “Just doing his job,” that’s all.  I ask about his family.  He laughs.  

He wants to know which kind of pain I fear most.  What??  Does he think I’m actually going to answer that…correctly?  Surely, if I say “burning,” he’s going to burn me?!  But wait, if I say “burning,” he’ll know that I’m trying to deflect…no. I’ll say “all kinds.”  I fear all kinds of pain!

He laughs again.

Maybe, he muses, what we need to do, in order to properly sort this, is to try…a sampler.  That way we can explore a variety of stimuli, to see what works best for you.  Pain is such an individual thing, you know…

I’m awake again.  The sky is growing faintly pale.  I decide to get up and enjoy the coolth of the dawn morning.  It’s going to be another blazing day in Paradise.

Eighth Night

The ultimate night of Hanukkah, in the year 5777 from Creation.

And the ultimate night of the civil year 2016.

And the beginning of Yom Rishon, or First Day, that always begins after the sun sets on the Holy Shabbat.

Time to be doing.  Time to be getting up and going! 

I think about my life in the past.  I was always getting up and going, doing, and doing even more!  I was never satisfied with “good enough.”  It had to be perfect.  Everything had to be perfect.  No such thing as “good enough.”

Being sick is pure torment.  I forget all the time why it is that I’m not at work.  I jump up and head for the phone, gonna get some work happening around here, can’t be that hard…OUCH!  Who broke my fucking arm?  WHOA, what happened to my neck???  And somebody’s stabbing me in the heart….what the fuck is going on here?  Why can’t I just go the fuck to work like a normal human being?

Take away my ability to do meaningful work, and you take away my self-worth.  I have a hard time feeling like I’m worth a rat’s ass even on a good day, when I’ve gone in and saved lives…but when I’m stuck on the sidelines, I may as well be dead.  

It would be a lot easier if I could tell from one day to the next, how I am going to feel.  If I knew, for instance, that every Tuesday would be an OK day, that I would go to the bathroom like a mensch, and my shoulders wouldn’t cause me to squeak every time I reached for something, and my brain would not be either fogged over from depression or reeling with the electrical overload from mania…if I could count on every Tuesday being a good day, then it would be possible to get a volunteer gig for Tuesdays.  A volunteer thing would do wonders for my heart and mind.

Too bad I don’t have any good Tuesdays!  Or Wednesdays, Thursdays, etc.

I hate to whine.  I know some people are going to actually read this, and probably will go, oh, fer krissake will you stop whining and get on with it!

I feel the same way. 

It’s been 16 1/2 years since I fell off the balance beam.  I have held on to the notion that there must be some greater purpose in it.  That, you know, it must be part of the Grand Design, that certainly I would be one of those who Triumph Over Adversity.

That has not been the case, at least not so far.  I haven’t given up.  Where there’s life there’s, etc.  It’s just that things are gradually becoming more unpleasant.  I wonder when, and how, this thing will end?

Sick Day

Wouldn’t you know it.

I have had a maintenance appointment for my van this morning, but….

I’ve been feeling weird for a few days.  Had an “upset stomach” last week, treated with Imodium and cannabis tincture, got OK in a few hours.

Past few days I’ve been seeing some blood in my stools, but that does happen now and then.  I’ve got Crohn’s Disease, after all.  Fortunately a mild case.  I’m grateful for that!

Last night I felt beat.  I chalked that up to long pleasant walks with My Girl Atina.  Had a simple dinner of soup and went to bed at eight.

I awakened at 6 with a start.  Freezing cold.  Well, it WAS freezing cold, since I am low on propane and had to triage between the gas fridge and the heater.  The fridge won.  So it was pretty damn cold this morning.

Suddenly I realized why I was awake at that ridiculous hour:  I needed the bathroom, and right now!

Fortunately my bathroom is right next to the bed, so I hopped in there….

Sorry to be gross, and I won’t be upset if you stop reading now.  In fact, I won’t even know if you stop reading now, so proceed at your own risk.

There is a certain vile stench that rises off of bloody stool.  Those who have smelled it know what I mean.

If I were not the kind of person who would rather die than puke, there would have been a terrible mess.

Imodium doesn’t stop this kind of thing.  Blood is very irritating to the digestive tract.  Imodium does seem to help the cramps and spasticity, so I use it.  I’m on my third.  Can’t take more than four a day.  As it is, after this episode has passed, my gut will be paralyzed.  I won’t crap for four or five days, at least, and then I might have a normal week or two. 

Now my belly is lying there on top of me all pooched out, full of borborygmi (oh God I love that word!  Borborygmus, singular; borborygmi, plural.  Def: bowel sounds that are audible with the naked ear)–in my case, audible across the room.

Last time, we had a little conversation about farts.  Remember?

Good.  Well, people, I know there are those among you who KNOW that dreadful feeling…is it really a fart?  Or is it…something else….

Yes, it certainly could be something else….let us get to the bathroom…quick….

Oh dear.

Let’s look on the bright side: at least I’m disabled, so I don’t have to worry about calling in sick.

But I just did call in sick to the mechanic!  Oh brother.

I’ve been halashing (that’s Jewish for “longing,” more or less) to do some volunteer work.  What I really want to do is to read aloud to little kids, homeless people, nursing home residents, people stuck in the damn hospital….anyone who wants to hear the magic of a book. 

To me, books are the most tangible evidence of humanity.  There is magic in the visual arts, but those could have been done by angels.  No angel could write a book.  They are too concrete, angels.  Come to think of it, an angel could never make good art.  You have to break the rules to make really good art.  Angels are programmed.  They can’t break the rules.

Ugh, my belly hurts.  Now I have to find my heat pack and put it in the microwave.  And burn some fucking incense.  Atina’s been licking her ass again.  The bathroom is stinking the place up.  God, I can’t wait till this blows over.

Chronic Fatigue, Fibromyalgia, Myofascial Pain Syndrome: What Do They Have In Common?

Hello dear readers.  I am writing this from a Comfort Inn in Grand Rapids, Michigan.  I am in bed.  I have been in bed for 26 hours, except for time out in the bathtub and walking Noga the Angel Dog, which I don’t do very often because she’s trained to go on potty pads.  That’s a blessing because these days I just don’t get far from a bed or chair.  Sigh.

I seem to have Chronic Fatigue Syndrome.  Not so long ago it was called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome.  I don’t know why they (“they” meaning the committee of chimpanzees that decides our fate by means of the ICD, or International Classification of Disease, which is constantly changing according to progress in medical science and the caprice of its members) changed it, because it seems to exactly describe the phenomena we miserable sufferers experience: constant overwhelming fatigue, and a weakened immune system that results in our catching every virus that comes within 10 miles of us.

I take this whole thing very personally, because up till the year 2008 I felt just fine, almost all of the time.  In fact, except for when I was depressed, I lived a very active, even athletic, life, working with dogs and horses, skiing, hiking, camping, aerobics, dancing, weight lifting, Tai Chi, Kung Fu….hardly sedentary, and this in addition to my long shifts on my feet in the ER and/or office.

Then–wham–I started pooping out on the last leg of my third floor apartment.  Shoot, I’d been going up and down those three floors for over a year, so why should I suddenly crap out two-thirds of the way up?  I went to my GP, who ran a bunch of tests and found me Vitamin D depleted, and with a strange kind of anemia.  Since I complained of a rapid heart beat and vague chest discomfort when climbing stairs or hills, he sent me for an echocardiogram.

That showed a bit of mitral valve prolapse, which can account for all the symptoms I was having, but the cardiologist smirked at me and said that the degree of prolapse I had could not account for my symptoms, and that the only clear result of the echo was that I was “out of shape.”  This made me furious, as I walked everywhere I went, did yoga, and of course climbed stairs.

So, since there didn’t seem to be much wrong with me (although in retrospect all those things I’ve mentioned, if added together, could certainly cause fatigue) I took my perennial state of exhaustion to be the “new normal” and pushed on through it.  Then I started getting sore.  All over.  I went for Chinese acupuncture, took herbs, and prayed a lot, but if anything I just got worse.

At that time I had a thriving Medical Acupuncture practice myself, and kept right on working.  Every once in a while I had to call and reschedule a patient because I just couldn’t muster the energy necessary to keep my own energy field intact while doing treatment.

Then disaster really struck.

I was the holistic doctor to an extended family, who were also close friends.  I was at their home a lot.  One of the grandchildren became ill with a sore throat, runny nose, fever, and general miseries.  The GP did a strep test, which was negative, and since he was a very good GP, he did an actual physical exam (a dying art) and found that the child had a slightly enlarged liver;  so he ordered tests for viruses that typically cause such signs.

The labs showed that the toddler had Cytomegalovirus (CMV), which many people contract as babies or young children.  It is in the herpes virus family that contains chickenpox, Epstein-Barr, and other common maladies.  It’s usually a benign, self-limiting illness, but like all herpes viruses, it goes dormant and hangs out in the spinal nerves, and can, uncommonly, cause a mononucleosis syndrome later in life, if the immune system takes a vacation for some reason.  In people with severely compromised immune systems, it can cause serious illness with damage to various organs.

I got it.  The serious kind.  It affected my small intestine, and I lost 30 lb., and had to take digestive enzymes for the next four years in order to digest my food and not poop it out basically unchanged.  Thank God I am over that now, and can finally eat without worrying about whether I took enough enzyme to digest whatever I am eating.

I have had five HIV tests in the last three years, because various doctors could not believe that I acquired acute CMV (proven by blood test) and didn’t have HIV, because in order to get acute CMV your immune system has to be basically nonfunctional.  All of the tests came back negative.

Why did I just go off on a seeming tangent about my various symptoms and maladies?  Because I want to make the connection between Chronic Fatigue and Immune Dysfunction, and argue that although the ICD monkeys dropped the “IDS” from “CFIDS,” they are clearly wrong, as most of you with CFS will agree.

Yesterday when I was collapsed in bed, yet unable to sleep, I started cruising the Medscape physician-only site and found a great article on the science of Chronic Fatigue.  There was a link to another article on Fibromyalgia, and I started following the breadcrumb trail of a wonderful series of articles that demonstrated that these three syndromes are finally being taken seriously, and much research is being done.

The three syndromes, Chronic Fatigue, Fibromyalgia, and Myofascial Pain Syndrome, have much in common in that all of them involve hypersensitivity in different parts of the brain and spinal cord.  There is a technical difference between the two pain syndromes, but they overlap and I don’t want to complicate things more than they already are, so let’s move on.

Although these syndromes have been recognized by medical doctors for centuries, they have most often been chalked up to neurosis and shucked off as hysterical, or a personality disorder, or imaginary, since they are mostly experienced by women.

But over the last few years, several pioneering university-based neurophysiologists have taken to looking into the possibility that people experiencing these syndromes might have abnormalities in the parts of the brain that secrete neurochemicals such as serotonin, GABA, dopamine, and others.  It turns out that people with CFIDS/Fibro/Myofascial Pain have very different neurochemistry both in brain and spinal cord, in the places where pain is processed.  They also secrete abnormally large amounts of Substance P, which is a direct cause of pain, and other chemical messengers that tell the brain, “I hurt.”

Functional MRI (fMRI) testing showed that the sensitivity of different parts of the brain was turned way up in people with CFIDS/FM/MFP, and each syndrome shows its own distinct abnormalities, which do overlap in the pain syndromes but not in CFIDS, which has its very own brain abnormality.

Almost everyone who suffers from one of the syndromes will have sleep disorders.  The scientists studied this in the sleep lab, and found that the sleep EEG (brain wave test) was abnormal in two very specific ways, in almost all of the subjects.  The abnormalities explain why our sleep is restless and un-refreshing, and also why we get our best sleep in the early morning hours.

And when the researchers looked at the demographics of the three syndromes, they discovered to their horror that the suicide rate in sufferers is TEN TIMES that of non-sufferers!  That fact is, thank God, putting their feet to the flames; and they are actively looking for specific treatments.  But for now, we are on our own.

So what can we do to help ourselves?

So far, the prescription is disappointing.

The recommendations are: eat a healthy diet low in sugars, so as not to feed the overgrowth of bacteria and yeast that many people have as a result of abnormal immunity;  gentle exercise (yeah right, I just walked my dog about 200 yards and my legs ached for hours afterward); meditation (that does help me); muscle relaxants such as gabapentin and a whole list of others; acupuncture; DBT and CBT; psychotherapy and antidepressants to deal with the psychological impact of the syndromes and resulting depression; and pain medication if necessary.

On the subject of acupuncture, I can tell you with absolute honesty that I have cured, and I do mean cured, case after case of all three syndromes.  My clients got better, went back to work and their normal lives, and didn’t come back.  I know they didn’t come back for the reason that they were cured, and not because the treatment didn’t work, because I lived in the community and saw them around, and they referred patients to me.

One woman had such bad CFS and FM that she couldn’t even get out of bed to come to my office, so I made house calls for a couple of weeks until she was strong enough to drive herself to the office for treatment.  She went back to work after about six months, and needed no further treatment.

Sigh.  I wish I could treat myself, but the points are largely on the back.  The specific points and needling techniques are not part of the Traditional Chinese Medicine toolbox, so I guess I need to find an acupuncturist who is willing to learn the special techniques for treating the syndromes.

Until then, I guess I’ll soldier on.  I know I’m not alone in this battle to simply live life.

The Tipping Point: So Long, Able Body

It’s not here yet.  I’m not there yet.  But it’s getting closer.  I have to stay alert, lest it overtake me like it did to Dad, and leave me too crippled to decide my own fate.

That’s what happened to Dad.  It happened over a period of years.  I could see it because I lived far away, and when came to visit every 3 or 4 months, I could see the changes.  But one day, or so it seems, he was frozen in thin air.  His body had just frozen.  He could walk, for a while, with a cane.  His hands would not cooperate enough to operate a wheelchair, so he shuffled it around using his feet.  It was good exercise, I thought.

He tried to keep writing–he was a wonderful man of letters–but his pinched nerves refused to work his hands.  It cost his soul a lot, not to be able to write his memoirs.  (No, he wouldn’t do all the alternative things to physical writing.)

Then one day his legs stopped working.  I think he had a stroke.  He had lots of them, and caused him to have difficulty speaking, kind of like Moses, only different.

These few words about Dad serve as a preface for what I am about to tell you.

I have been having excruciating pain in my neck, due to arthritic vertebrae.  The holes in your spine where your nerves branch off your spinal cord and end up moving everything and feeling pain and whatnot–those holes that belong to me are getting calcium deposits on them, which is squishing and poking into the nerves in my neck.  Plus, the spinal canal (you know, the canal your spinal cord runs in–helpful, ain’t I) in my neck is getting narrowed, squishing the spinal cord itself.  I guess that’s why my arms ache and tingle all the time.

Today I drove the hour-and-a-half to see a nurse practitioner at the spine clinic where I get things that so far have not helped, like an injection of steroid stuff into my neck (that was fun) to medicines that allow me to sleep for three days at a time between doses.  Who needs pain meds when you’re fucking asleep?

For the past month or so my neck has been killing me to the point where bending over to pick up something on the floor gives me a jolt of pain, 8-9, sometimes 10 on a 1 to 10 pain scale.  It’s all I can do to hurry over to the bed and pack myself in pillows so I can’t move.  After a while the pain lets up, but not all the way–enough so I can get up and take some acetaminophen.  I don’t do opiates like Percocet, because they make me itch.  Every once in a while if nothing is helping–immobilization, hot packs, arnica oil, CBD oil–I’ll take one of my carefully hoarded Tramadol, a semi-synthetic opiate that relieves my pain just down to the barely tolerable level without making me dizzy or itchy.

So I saw the nurse practitioner at the spine clinic, and unlike the actual doctor of the clinic, the nurse practitioner had some very good and practical suggestions, like physical therapy with massage and electrostimulation, and a hardshell neck brace for when I have to do anything.

Since she seemed to know what she is doing, I asked her point-blank: what is the natural history of my disease?  Us medical people call the usual course of an illness to be its “natural history.”  I like that, because I have always loved Nature, and have been an avid Naturist–no. no, I mean Naturalist–all of my life.  So I asked her about the natural history of my disease, and she said “Not good.”

“What do you mean, “not good”?

Well there was a point where surgery–

“Surgery?  What, they take a Dremmel (an all-purpose engraving and grinding tool) and ream out the foramina (holes where the nerves pass though)?”

Yes, in fact.

“How good is the surgery?  What’s the success rate?”

She shakes her head.  Not good at all, she says.  About like lower back surgery…….which stinks.

But, she says, you might consider it when your hands get too numb to work.

My whole body, including my mind and soul, was numb as I walked out to the parking lot.  “When,” she had said.  Not if.  When.  I kind of thought that’s what’s in store.  My left arm, the one where the nerves are more severely damaged, “goes to sleep” quite a lot, and it aches and tingles pretty much all of the time.  It’s definitely progressing.

And then we come to my right shoulder.  The end of my collarbone that attaches to another bone in the shoulder is so gnarly with arthritis that my last steroid shot not only did nothing, but the difficulty of getting the needle into the joint (because the joint is almost closed up) has made the whole thing worse.  I have constant pain and limited mobility, and probably will end up having the end of that bone sawed off, which is supposed to restore mobility.

I have firmly and completely decided that I am not, God willing, going to let myself go the route my father went, completely dependent on others for years.  And unlike Dad, I don’t even have anyone to care for me should I be suddenly a body with arms that don’t work.  I would be in a nursing home until I died.

I’m watching very carefully for that tipping point, the one between independence and dependence, and praying it doesn’t sneak up on me.

As one of my Physical Medicine professors used to say–he was in a wheelchair due to MS–everyone is TAB–Temporarily Able Bodied.  And so it is, with me, anyway.

I used to love to swing an axe and split wood all day long, or take on an unruly horse, change a tire on my 3/4 ton Dodge Cummins Diesel truck…no more of that for me.  I had to trade the truck in for an easy-to-drive car.  My hands only hold out for so long at the keyboard before they seize up and I have to stop.  I can’t play my banjo anymore.

This is me playing my 1897 Fairbanks & Coles fretless banjo in 2005:

 

Life is getting less and less attractive to this formerly physically active person.  I spend virtually all of my time in my recliner, which is the only place my body doesn’t scream at me.  Hell, my place has not been vacuumed for over a year, because I can’t look down or look up or lift anything over two pounds.

It’s getting closer.  I have to be careful not to miss the tipping point.

 

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.”

Breaking The Silence of Stigma: Laura P. Schulman

alien woman headThis Wednesday’s Breaking The Silence of Stigma interviewee is….me!  So, without further ado, let’s jump right into the shark pool!

BSS: How long have you known that you are living with a mental illness?

LPS: When I was putting myself through a very expensive college, scrambling for every dime I could earn, I saw an ad in the campus newspaper recruiting paid volunteers for a pharmaceutical study, for some kind of psychoactive drug.  Get paid to take drugs?   Oh boy!  Pennies from heaven!  So I applied.

I had to take a whole day’s worth of psychological screening tests to determine if I was suitable for the study.  I’ve always been good at tests!  I aced ‘em all!  Or so I thought.

The following evening I got a call from somebody in the psychology department.  He told me that the tests indicated that I was suffering from Major Depressive Disorder, and he ordered me to appear at Student Mental Health the following day.  And, oh my, I was disappointed to hear that I would not be accepted for the drug study.  Rats.

I couldn’t really figure out what all the fuss was: Major Depressive Disorder?  Hell, I didn’t feel any different than I always felt.  I mean, I’ve got an artistic soul, and those are always tormented, aren’t they?  If I didn’t feel intensely sad and/or elated all the time, how could I make my art, write my poetry, go without sleep for virtually days at a time….certainly there had to be some mistake.

But I showed up at Student Mental Health at the appointed hour.  A nice poufy lady welcomed me into her office and sat down on the other side of the desk, gesturing me into the chair on my side.  She perused a chart.  It was my chart.  This is significant, because I had never had a chart before.

She looked up at me and smiled.  She looked down at my chart and frowned.

“It says here that you’re depressed.  My goodness, you’re a straight-A student.  You have a good job in a lab.  You’re good looking.”

She looked up at me again and smiled again.

“So why are you depressed?”

I got up, thanked the nice lady, and walked out.

 BSS: Can you share with us your diagnosis/diagnoses?  When were you diagnosed with these?  How were they diagnosed?  Did you have any special testing?

LPS: I have Bipolar Disorder, Post Traumatic Stress Disorder, Dysthymia, and a touch of OCD.  And I’m an Aspie, as in Asperger Syndrome.  In 1996, I had a battery of tests at the University of Utah in Salt Lake City.  They totally missed the Bipolar and came up with Major Depressive Disorder, probably because I still didn’t think any of the hypomanic things I was doing were abnormal.  In 2005 I had the tests repeated at the University of Washington in Seattle, and they nailed the BP, the PTSD, the Dysthymia, and told me I scored pretty high on the OCD scale.  The Aspie-ness was diagnosed collaboratively with my Ph.D. psychologist, along with some testing.

BSS: Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

LPS: As I said above, the diagnostic process was pretty choppy, until I arrived at the University of Washington Mood Disorders Center, and got what I consider to be a very comprehensive and correct work-up.  I feel confident that my diagnoses are definitive and correct.  This has helped immensely.

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

LPS: I have been hospitalized twice.  The first time was because I was off meds for fear of being “discovered” by my hospital administrator.  I know, right?  The second was because of wrong medication from a terrible psychiatrist, combined with an over-the-top relationship with another poorly medicated Bipolar.  They definitely helped, because they kept me away from lethal things long enough for my suicidality to blow over.  The second hospitalization was great in another way.  My then-psychiatrist, who was terrible, was on vacation, and my current shrink-o-matic, who is wonderful, was covering for her.  I loved him immediately and begged him to let me be his patient.  That was in 2002.  He’s still my shrink-o.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

LPS: Oh yes. I’m currently on six different medications.  Yes, they certainly help.  My symptoms are, thank God, mostly under control.  I think.  Side effects….lots.  The worst is from the Lithium, which causes me balance problems (I took a bad fall just a couple of days ago, got a nice concussion), and a tremor that is sometimes so bad that I can’t type!  My handwriting has become deplorable due to the tremor, too, especially my Hebrew!

BSS: Have you ever had ECT (Electroconvulsive therapy)?

LPS: No. I have had nearly 100 rTMS (repetitive transcranial magnetic stimulation) treatments, which literally saved my life. I have had lasting (and I hope, permanent) positive results.

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?

LPS: I have a really wonderful therapist whom I have seen on and off for fourteen years.  She really hits me where I live, and, in a compassionate way, kicks my butt regularly.  In addition, I’m a compulsive blogger and am blessed to have an ever-expanding group of wonderful fellow Mental Illness bloggers, who are a huge support to me.  Thank you, Mental Bloggies!  I find that being a Mental Health advocate gives me direction and a great deal of satisfaction.  I also have a Psychiatric Service Dog, who helps me in many ways.  She helps me to stay grounded, on task, provides structure to my otherwise fairly aimless life, and she is invaluable when I have a PTSD episode.  If I dissociate she licks me till I come back.  And if I am having a flashback that someone is in the room, all I have to do is look at her, because if someone was really trying to enter my house she would go off like a barking bomb.  So if she’s quiet, I know that I can be sure it’s “just” a flashback and will go away eventually.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

LPS: Ugh.  Can’t you ask me something else?  Damn me.  OK, here’s your answer:  Yes.  Everything.  I have never held a job for more than two years, because I eventually get manic and fired, or depressed and fired….Now I’ve been certified by a Federal judge to be 100% disabled.  That has taken some getting used to, and I still get weepy when I think about my lost dreams.  I was born to be a doctor, fought through thick and thin to be one, was a really good one, and now allthat is gone…it’s rough.

Education has not been a problem because I am an Aspie and I get straight A’s.

My relationships have been very typically Bipolar:  elation, crash, elation, crash…and then my paranoia sets in, and I’m out of there.  I recently took a seven-year break from relationships, consciously.  Then I opened myself to someone who showed up in my life, and….turned out to be waaaaaay crazier than I am, so….I’m really happy with my life as a single person, and I don’t really trust myself with relationships.  So I might just stay single, except for my dog!

Alcohol—I have tried and tried to become an alcoholic, but it never took.  I’m only half kidding about that.  I hung out with alcoholics much of my life, and drank right along with them, but in reality I can’t handle more than half a beer, so I got disqualified.  Drugs, now, that’s something different.  I did a lot of psychedelics when I was young.  And I smoked a lot of pot.  But thank goodness I never took pills (other than acid or mescaline LOL), and I never shot up.  I did have a cocaine addiction though, which lasted for years.  Cocaine cured my depression, until it wore off and the crash was terrible.  I’ve been clean from that for over 30 years.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

LPS: Yes, yes, and yes.  As a doctor, having a mental illness is tricky business.  First of all, there’s the terrible schedule: being on-call overnight two or three times a week, which is horrible for stability in general and for medication schedule in particular.  Secondly, if one discloses one’s mental illness, one gets one’s license limited and one must have a supervisor, even if one is a senior physician who has never had a mishap of any kind in terms of patient care, clinical judgment, or even paperwork.  It’s humiliating.  I tried to go back into medicine after taking a break to get stable, and the licensing system made me go to a rehab program—even though I am not a drug addict (they never knew about the long-ago cocaine), because they lump mental illness in with addiction in what they call “behavioral medicine.”  They made me show up for a drug test once a week.  I was to do that for a year, before they would even give me a supervised position.  I was so humiliated that I gave it up and went back to my disability status.

In addition, one’s colleagues do not like to hear about one’s illness.  They tend to do things like turn around and walk away if one shares one’s mood or diagnosis.  So one learns to suffer in silence.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

LPS: Get the best psychiatrist and psychologist you possibly can, and keep them.  Do what they say, and if something doesn’t add up and you feel uncomfortable with their assessment or treatment, say so.  And if they get haughty about it, fire them and find a better one.  Your life is precious.

Find a genuine support network, in whatever way speaks to you.  I, for instance, relate better online, because face-to-face human contact makes my teeth itch (Aspie).  Others find great satisfaction and validation in volunteering.  Seek out a peer group.  Loneliness kills.  Get an emotional support animal, or a Psychiatric Service Dog if you need one.  If you are in a long-term relationship or marriage, and if you have children, be sure to keep everybody in the loop.  Don’t keep your illness a secret.  Secrets kill.  Open and honest relationships, including couples and family counseling if needed, are life-saving.  And don’t forget the kids!  They need help dealing with their feelings too.  My own experience has taught me that it’s tough being the child of a mentally ill person.  Get the kid(s) their own counselor.  It’s a great investment in your children’s future.

And when things get really dark and scary…..get help!  Reach out!  Don’t be embarrassed!  Get help!

Donut Hole? Black Hole!

So after a two-year long low-grade struggle with the  American Social Security system, which ground through the process of initial rejection, denial of my appeal, and then finally a cameo appearance before a federal judge, I am Officially Disabled.  I was Disabled before that, according to my “Own Occupation” disability insurance policy (which was the only good financial decision I have ever made;  it has literally saved my life), but that applies only to the practice of Pediatrics and Adolescent Medicine and does not apply, say, to “Greeter At Walmart.”  Coincidentally, the Walmarts in my area have fired their greeters.  Perhaps the sales of Ol’ Roy Dog Food was flagging, and they needed to create a few more desperately poor elderly who might be able to spring for the 33 cent cans.  (Damn it, why does the “cent” sign no longer show up on keyboards?  Another of my conspiracy theories: the government is going to melt down all the pennies for the copper.  Think about it: we are walking around with FORTUNES worth of precious metals in our pockets and don’t even think about it!  N.B. it is a federal crime to melt down pennies, in case the idea should enter your head, as it did mine.

Where was I?  Oh yes. Normally when one gets Social Security Disability, there is a two-year waiting period before you can get Medicare health insurance.  So if you are trying to live on the approximately $1000 per month that most people are rolling in on SSD, what are you supposed to do in the meantime?  Medicaid, I guess, if you qualify.  But if you don’t qualify because your spouse had the good fortune to land a part-time job at McDonald’s with no benefits, well, you are just shit out of luck.  There is a very hole-y network of nonprofits that try to help people in this situation, but the need far exceeds the demand; thus we have an increasingly sick population, growing sicker all the time.

Should you happen to live through two years of being uninsured, then you get Medicare!  Yay!  I was extra lucky: because the Social Security system denied my claim automatically instead of looking at it, the judge ruled that my Medicare eligibility was up for “time served,” to begin not only immediately, but retroactively.  I got my hearing in December, and my benefits started ticking the previous October.  Confused?  Me too.

Strangely enough, the Social Security system does not give you a choice about federal insurance plans.  Previous to becoming Officially Disabled, I had a fairly expensive but pretty darn good plan through the Federal High Risk Pool, which is YES, PART OF OBAMACARE, which made it possible for me to get insurance after I had been denied by private insurers.  It was a standard choose-your-own deductible, then copays for doctor visits and 80-20 for hospital stuff up to a reasonably low out-of-pocket, which I found quite livable.  The drug plan was good, rarely demanded precerts, and had pretty standard copays.

And then.  And then….I am suddenly catapulted into the murky and confusing world of Medicare, because if you’re on SSD you have to be on Medicare. So at first gasp it doesn’t look too daunting:  there’s only part A, B, C, and D to worry about finding providers for.  I said to my therapist, whose idea this whole rat’s nest was in the first place (thank you, B__), um, don’t you think I should go and see a social worker to help guide me through the system?  Oh, no, she chirps, just call up the AARP.  They’ll walk you through it.  They have the best supplemental plans.  Oh. Er, what’s a “supplemental plan”?  That’s Part C, which pays for doctor visits, and Part D, which is your drug plan.  Parts A and B have to do with hospital care.

OK.  So I get my Medicare card, which automatically means my Federal Risk Pool insurance is cancelled.  So now I have to QUICKLY do something about transferring pharmacies, because I have my brand-new Part D card for medicines, and they have a mail-order pharmacy through which you can get three months’ worth of medicine with only one copay instead of three.  YEE-HAH!  So, off I go on the merry-go-round of chasing down doctors’ assistants and nurses to call my prescriptions in to the new pharmacy, because no, you CAN’T just transfer them from the one you already have.

One of my meds, the one I use to digest all my food with because for some reason my body doesn’t make those enzymes, took FIVE phone calls from the long-suffering physician assistant to get it right.  Ay-ay-ay, I’m having visions of chimpanzees in puffy white caps pouring pills into bottles.  Not encouraging.  So finally they managed to get everything right, and in the meantime I’m surviving on my hoard of meds that I brought back from Israel in October.  Had it not been for them, I would have been up shit creek without a paddle.

So the nice lady calls from the pharmacy and we go over the Rx’s one last time to make sure she’s got them right, and then we place the order, putting all the copays on my American Express Card that gets the mileage points for every dollar you spend, and…”Oh dear, are you sure you want this entire order?  It puts you into the Donut Hole right away.”  The what?  Donut Hole?  Isn’t that something you get with coffee?

Oh no.  That’s what you get with Medicare when the retail (I repeat, RETAIL, because that’s the part they don’t explain to you up front) expenditure hits $1950 (plus or minus a bit, I don’t have it in front of me.)  So here’s how it works:  You pay a premium of about $40 per month for prescription drug coverage.  When you buy a prescription, you pay a pretty normal copay based on a tiered system, anywhere from $3 to 1/3 of the actual cost of the drug if it is a specialty drug.  After the plan has bought you $1950 worth of drug, then the plan pays NOTHING until you have paid $4,750 out of your pocket (if you have one), at which point the plan goes into hyperdrive (“Catastrophic,” they call it, just for drama) and you pay almost nothing until the whole sonofabitching thing resets itself at the top of the year.

So what, I ask in my innocence, do you do if you do not happen to have nearly $5000 kicking around?  Oh, Medicare has a program for “Assistance,” but almost nobody qualifies for it.

There are community programs (in some communities) that help.   If you are indigent according to the Medicaid standards, you can just get Medicaid.

Otherwise you’re screwed.  Many disabled and elderly persons find themselves with too much money to qualify for assistance programs but not enough money to buy their medicines.  So let’s see, what happens when someone can’t afford their expensive blood pressure medicine and (G-d forbid) have a stroke?  Well then, Medicare Parts A and B kick in then.  No worries there, got you covered.  So if you can’t afford to take your medicine, don’t fret, because Big Government is gonna take care of you in the hospital after the heart attack you get when you can’t afford your Plavix (very expensive anti-platelet drug that sounds like a kind of mouthwash).

So what am I going to do about this?  Luckily, I just got one of those packets of checks from the credit card company where I can write myself an interest-free loan for a year.  That’s what I’ll do, because I don’t have any other choice.  And I’ll pay it off in installments over the year.  I’m damned grateful to have opened that packet instead of chucking it directly in the paper recycle like I usually do.  Must have been that guardian angel again.

And speaking of guardian angels, the one that convinced me back in 1992 when I was hale and healthy except for the occasional skiing wreck, and making what was for me a freakin’ lot of money, THAT guardian angel who convinced me to sign on the bottom line of a very expensive, very comprehensive private disability plan….THAT guardian angel gets a set of gilded wings from me, today and every day, because if not for that policy I would be, well, to tell you the truth I would probably be dead, because I would not have been able to support both my life and my diseases.

My blessings are many, many, many.  This whole SSD process has opened my eyes to the heinous and disgusting devaluation of the disabled and elderly that has become a legacy of shame in this country.  I want to do something, but don’t have a clue where to begin.  I can’t even go to Washington and set myself on fire on the White House steps because I’m terrified of fire.  But one thing is certain: with the aging of our population, if Medicare doesn’t get fixed, there will be many of our ill and elderly going not only into the donut hole, but into the black hole, never to emerge.

What task does your service dog perform to mitigate your disability?

This is one of the two questions businesses such as hotels or restaurants are permitted to ask you, under the Americans with Disabilities Act.   The other is whether you have a disability (but they cannot ask you what it is).

With a Seeing Eye Dog, (now called a Guide Dog for the Blind), well, the whole thing is pretty obvious.  With a Hearing Ear Dog, well, deaf people often don’t speak like hearing people do, but I can still imagine some cretin of a desk clerk challenging a deaf person accompanied by a Service Dog.

And when it comes to Psychiatric Service Dogs–listen, I have a lot to do today.  My son is coming for the weekend (YAY!!!!) and I have to get some of this wretched mess cleaned up, at least so there are paths to walk in.  You think I’m joking?

Anyway, I always travel with my PSD (Psychiatric Service Dog).  My last one, Ivan, was a German Shepherd.  No one even asked about him, ever.  Done.

But he had the bad taste to die on me in 2007, when he was only five, and up until two years ago I went dog-less because I just could not get over Ivan.  I was in Israel then, too, and had a huge support system.  Here in the States I have NO support system, except for my wonderful online virtual family (that would be YOU).

So when I had to return to the States I got me a dog, and the one who spoke to me of loving-kindness and caring was Noga the Llasa Apso, who at 13.5 pounds is a pound overweight, stated the vet emphatically yesterday.

Noga is very hairy, as Lhasa Apsos tend to be.  She is also very cute, ditto.  She does not look like she could protect anybody or hurt anybody, although she does try to bite the mountaineer workmen who are helping to fix my dwelling, but since she is unable to get her jaws around even the toe of their boots, she can’t do much harm.

So when I tell the desk clerks that she is a Psychiatric Service Dog, they wrinkle up their foreheads, mutter something, and go into the back office to look something up, which I know is the ADA guidelines.  Then they come out and demand to know my disability, and I remind them that they are not allowed to ask the nature of my disability, only if I have one.  Ahem, ah, yes. Then they want to know what task or tasks my dog does for me.

I used to be able to say “She keeps me from killing myself,” but the ADA made a new classification called “Emotional Support Animal” for that, and ESAs don’t have the same rights as PSDs do, so if you need an ESA you have to stay home and not kill yourself.

The things Noga does for me can be very subtle, or they can be more not-subtle, like if I am staying up late writing blogs and giving myself a manic attack she will lie down on top of my keyboard and look at me defiantly, making me laugh and choke on my spit.

Lately she’s been doing a new task, one that Ivan used to do but I haven’t had Ivan so he couldn’t do it.

One of the ways my brain is fucked up is that I have temporal lobe seizures.  They manifest as sensory hallucinations.  For instance, I sometimes smell things that other people do not smell.  Fortunately they are usually pleasant smells, like cinnamon buns baking, and not, well, you can imagine.  Other things are more on the level of night terrors, where I hear someone trying to break in or (like last night) walking on top of the roof trying to find a way in.  This is PTSD stuff having armed conflict with my temporal lobe.

The way Noga helps me with these things:  if someone were to be baking cinnamon rolls, you can bet that little fuzzy nose would be in the air sniffing and sniffing.  If she is going about her doggy business, playing with her “critters” and chewing her fake bones, believe me there is nothing in anybody’s oven.  And since nobody lives within a half mile of me, there better not be anything in my oven that I don’t know about.

Secondly:  Noga is a dog.  Even though she is not a German Shepherd trained guard dog like my Ivan was, she still has very particular ideas about what is “hers,” and our dwelling, however humble, is decidedly hers.  If anyone were walking on the roof trying to get in, she would not be snoring in my left ear; she would be doing her imitation of a miniature German Shepherd guard dog in a Wookiie suit, size Extra Small.

So I know that if I wake up in the night and perceive bizarre things like battles of warring Zombie clans baking cinnamon rolls in my toaster over and Noga is fast asleep, it is all a fig newton of my homogenation and I can go back to sleep, perchance to dream something less annoying.

Maybe I should just print this out and hand it to the next hotel desk clerk, pretending that I am Harpo Marx.  That’s it: I will get a Harpo Marx wig.  That should help.