Already This Morning

I woke up with a shart.

Not exactly woke up with, but soon after.

…In the middle of the first cup of coffee I’ve had in days.

Lying in bed, dallying with my 35 year old, much loved, many times broken and repaired porcelain coffee cup, made special for me by my dear departed daddy-o, sipping strong Cafe Bustelo made in my simple Melita single cup red plastic drip cone.  Very strong.

It began the way most farts begin.  But it didn’t stop there.

Fortunate that I had my favorite lounge pants on, and that they are black, and that I have a handy clothes pole in my rig where they now hang, dripping dry after a wash-out in the bathroom sink.

I am disappointed.  This morning bulges with plans unfulfilled.  It was to be the second in a series of unparalleled good days. 

Yesterday, I wasted about two weeks worth of energy that I didn’t have, but took a mortgage on my future and went ahead with something wasteful in every way.

I have held off writing about this whole balagan (Hebrew for “wretched mess”) with the cardiologist, simply because it’s too boring to think about, and certainly too boring to write about.  I’m feeling sleepy.

B’kitsur (in short): I have been experiencing episodes of inflammation in my veins, on and off for a year.  Since I must have the torn cartilage in my left wrist surgically repaired, it is now relevant to discover whether this vein issue presents any additional surgical risk.  I was sent to a cardiologist who supposedly specializes in veins, to find out.

This cardiologist did not seem at all interested in my veins or anything else.  Oh yes: he is interested in tests.  Every kind of test that is high tech and expensive, he is interested in.  I believe he might be a little bit interested in money, too.

Last week I endured three kinds of cardiac echo tests, performed by a male technologist whose pinky finger seemed to be using my bare left nipple as a place marker as he worked the echo probe on my heart; at least I hope that is what he was doing.  It hugely triggered my rape survivor PTSD, and I dissociated, leaving him alone with my left nipple.

The next part of the balagan was a stress echo, where they do a regular echocardiogram, then hook you up to a 12-lead EKG (they hook you up real good: instead of merely slapping the sticky EKG leads on, they first scrub you down with alcohol and then sandpaper your skin without asking first whether it’s OK or whether you have any skin conditions, then they stick the leads on your abraded skin without looking to see whether you’re already bleeding) and put you on a treadmill.  You take two or three steps at a normal pace, then suddenly and without warning, they turn up both the pace and the angle, so that you have to trot to keep up; and suddenly your legs feel like they’re going to fall right off and you tell them that; so instead of simply slowing the treadmill down, they stop it suddenly, so you DO fall down.  Then they drag you bodily onto the echo table and do the “post exercise” scan, which of course is invalid because your heart rate didn’t reach the target 85% of maximum.  Shit, I could have told them that.

Now, you must understand that this represents all of what I hate in modern medicine.  Not all.  That comes later.  Most.

Thing One:  This test should have been scuttled.  Medicare should never have been billed for an inadequate exam.  It’s like billing for a blood test where the quantity was not sufficient to test.  And yet it was billed.  Is this fraud, or merely bad practice?  I’m thinking.

Thing two:  When I saw the cardiologist in follow-up for this inadequate test, he never really questioned why I was unable to exercise, even though I have been complaining and complaining and complaining of exercise intolerance to anyone and EVERYONE, including himself. 

Instead of talking this through with me, he went ahead and ordered a NUCLEAR stress test.  NUCLEAR!

How effing much are they billing Medicare for that one?  Cheeziz K. Reist** on a bicycle, I can’t even imagine.  4K?  At least.  With whipped cream and a cherry on top.  No nuts, thank you, they get in my teeth.

The nuclear balagan began yesterday afternoon, following the first decent morning I’ve had in weeks.  The heat has killed my already overheated constitution.  My weight is plummeting, since anything heavier than clear liquids leads to hours of belly pain and retching.

So it stands to reason that on the first morning that I pop out of bed at 0630 feeling rested and ready to engage with the world, I must fast, because fast I must if I am to get this nuclear test behind me.

So I fritter the day away drinking sugary liquids so I won’t get any more hypoglycemic than I already am.  I check my pup into an air conditioned kennel at the vet for the afternoon, and check myself into the diagnostic cardiology lab again.

I am relieved to find that the tech with the heat-seeking pinky has been replaced with a robot who scores very high on the Spectrum, but behaves well and doesn’t give me any shit about using the special tape I brought to secure the IV: special tape that does not rip my skin off.  He gets the IV in on the first try, painlessly, in my only good vein.  I love him.

I’m injected with Technetium 99, the radioactive isotope that the gamma camera will read, to make pictures of my heart at rest.  I’m given my first Chinese Water Torture huge cup of water to gulp, which expands my circulating blood volume.  They want to get the isotope into my heart muscle and cardiac vessels.

The gamma camera scanner is claustrophobic and cold.  I dissociate.

Next thing is the injection through the IV of some stuff that dilates all of my blood vessels very suddenly.  It’s a good thing I’m lying down already, since my blood pressure plummets from 130/85 to 90/60, which is officially the territory of circulatory shock.  It felt very weird.  I decided not to dissociate for a bit, knowing that I could at any time.  I kind of dug feeling how it felt, the weirdness of it all.  I stayed present for it.

Now they wanted me to eat a high fat snack, to help open up my circulation and get things running.  Fortunately I had just such a thing in my backpack.  They did have snacks there, but all of them contained gluten.  That’s why I always bring my own food, anywhere and everywhere.  You can never tell.

After another giant cup of water and two radioactive trips to the bathroom, I went back into the scanner, this time with leads on.  The EKG would coordinate the camera to pick up on the various phases of contraction and relaxation of my heart. Cool.

So that’s done.  Very nice.  Except for the couple of PVC’s (Premature Ventricular Contractions) that I had, which are nonspecific and most likely benign, I am sure that this will be a normal study.

And I think I remember signing a “Medicare balance billing” agreement, which means that anything Medicare doesn’t pay for, I get to pay for. 

Worse, this whole balagan has snowballed from: why does this person have recurrent vein inflammation? into a whole high tech cardiac workup.

Medicine has got itself into a very sad situation. 

I’m crushed to see my formerly noble profession sink so low.

I remember babbling to the tech who did the vasodilating torture test (they swapped him out for the robot for this part), about how any doctor who knew her salt could do everything she needed with a stethoscope, an otoscope, ophthalmoscope, tuning fork, some straight pins, and a few basic lab tests, five working senses, and a working sixth sense.  Your basic Black Bag.

He said yeah, I know, right?  That’s what they do in the third world.

I’m like, yeah, right?  What are you gonna do when the grid goes down?

Meanwhile back at the low tech ranch, I’ve been forcing myself to stay inside my body when I’m out walking The Doggess.  It’s been worthwhile.

I notice that while I do get out of breath, the limiting factor is that after a few minutes both my thighs and my calves start to feel like wood.  If I don’t slow down or stop for a few minutes, my legs just absolutely stop me.  I just can’t go no further.  Nothing doing.

And so [n.b., one is never to begin a sentence with “and so”], what is your diagnosis, Doctor?  (Physician, heal thyself…if you can tell me who said that, you get a prize!) 

Hie thee to the medical literature.  Ah, there ’tis!  What ill manner of bodily curse is’t?  Fie, Doctor!  Take it off me now!  What, cans’t?  Nay.

It is: Neural claudication.

“Claudication” happens when, for one reason or another, arteries experience spasms in response to increased oxygen demands, such as exercise or digestion.  When this affects the heart, we use the term angina.  When speaking of arteries downstream from the heart, such as the legs or abdominal arteries, we say claudication.

The most common cause of claudication is atherosclerosis, and the most common cause of atherosclerosis is smoking.  Second most common, diabetes. I don’t smoke and I’m not diabetic.

Move down one notch on the algorithm.

Next cause: neurogenic.  Degenerative Disc Disease, long-standing.  Yup, got that. Description.  Yup, got that.  What to do about it: um, let’s see.  Whole spine decompression and fixation?  Hmmm, let me think about that for a while.

In the meantime, I have my explanation for the most recent annoying symptom on the list: my right thigh goes into a cramp when driving in traffic, or anytime I can’t use the cruise control.  Claudication!  And it didn’t cost Medicare a thing!

Dammit, is there a doctor in the house?!

Getting back to the shart thing:

Last evening, having completed all of the cardiac testing I intend to have in this life, I collected my ebullient pup from the vet and returned to my tiny-but-it’s-got-a-plugin camping spot.  Had a few larfs with a kindred soul at the far end of the campground, went to bed with high hopes for today. Woke up feeling pretty good, made coffee and a gluten free muffin…whoops, the Crohn’s monster swooped in and snatched another day.  Oh well, let it go, let it go, let it go.  What’s the hurry?  Where’s the fire?

In my guts, is where the fire is.

**Dear R. Crumb, thank you for bringing Cheeses K. Reist into the world.  Cheeziz is his great-grand-nephew, seven times removed.

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?

A Very Bad Day

Flagstaff, Arizona, is a magical place.  Even the KOA Kampground (a chain that I avoid like the plague) here bumps right up against the Coconino National Forest.  Everyone is nice (well, almost everybody), and it’s just incredibly cool to go to the grocery store and listen to families talking to each other in Navajo or Hopi.  And unlike the Mescalero Apache, who are sick of white people, the Native Americans and white people seem to get along just fine, even though the Navajo and Hopi got a really bum deal at first.  In my opinion, before Americans start getting all self righteous about Israel, they need to give back all the land they stole from the Native Americans.  And I am serious about that. 

Anyway.

I met my new spine surgeon for the first time today and had a set of xrays that were shockingly worse than they were two years ago.  My cervical spine is starting to look not like a spine at all, but like some random stick, bent in the wrong direction.

A new finding is that I have zero reflexes in my right arm, very little in my left.  Strength was 0/5 on the left and 1/5 on the right.  I guess that explains why I have to use two hands for a lot of tasks, and couldn’t open any sort of bottle even before I fell on my left wrist, which is getting worse not better even though I keep it in a splint. I see the hand surgeon on the 11th.

I showed the doc my tremor and told him about the muscle spasms and twitches, and that I was worried about spinal cord compression causing that.

He said I might have cord compression, but that it wouldn’t cause those symptoms or my weakness and lack of strength, but MS would explain those things.

I have been thinking that myself, but to hear him say it was like another nail in my coffin.

So he ordered an MRI and referred me to Neurology to investigate the MS angle.

By some miracle, someone had cancelled their MRI slot, so I was able to have it done this afternoon.  The MRI techs were nasty and snotty, which did not help my emotionally fragile state at all.  When a neurosurgeon tells you you probably have MS on top of your spine looking surgical, it’s harder to let snotty technicians roll off your duck’s back.

So when I got back to my van and found that Atina had helped herself to things in my toiletries bag, and shredded stuff all over the floor, the bed..I went nuts.  Apeshit. I screamed at her.  Threw things.  Then I collapsed on the floor and screamed and screamed and screamed.  Atina tried to help me, but I wanted none of it, so she lay on the edge of the bed trembling while I lay on the floor screaming.

Everything hurts.  I have a headache, which I’ve had all day, from high blood pressure.  I take the damn pills for it, but today they didn’t work.  My BP was 152/95 even after my pill, so god knows what it would have been without.

Tomorrow I have to make all sorts of appointments, neurologist, Neurosurgery recheck, RV repair because more components are shitting the bed; and all I want to do is sit in my new chaise and get wiped out on cannabis and benzos to counter the paranoia from the THC overdose.  I might still, if I can get enough done in the morning.

People, it was a very bad day, and I have a feeling it’s going to get worse.  I’m carefully thinking about where that red line is going to be, and how to arrange things.  I have the means.  I have no interest in “palliation.”  I have no one to help me.  I can’t stand to be around other people, like in a care home.  I can’t stand strangers in my environment.

I’m in constant pain, I’m exhausted all the time, I drop things, I fall.  It’s getting to be that time.  I’m winding down.

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!

Good News and Bad News

First of all I gotta say that I am really proud of Rhonda Elkins for her bravery in allowing me to post the letter that she wrote shortly after her 23 year old daughter’s suicide, on my Wednesday feature “Breaking the Silence of Stigma.”  That letter touched a lot of hearts and did a lot of good.  And I’m proud of my readers for rallying around Rhonda with their words of support, and some frank and open discussion of their own struggles with suicidal thoughts.

And I’m really proud of ME for writing a great review for David Henry Sterry’s new book, Mort Morte.  He’s honored me by using my review as the copy on his web page.  Kinda makes me think about going back to copy writing.  I wrote copy for an online store for a while, then ditched it because they started carrying shit  stuff I didn’t like, so there went my low-paying writing job. I can’t write copy for stuff I can’t get excited about.  Like “Wow, look at these tacky rhinestone-studded chartreuse earrings in the shape of a bunch of bananas.  Carmen Miranda would have put them on her head!  Only $1,200 on sale now!”  Ugh.  Now if someone would pay me to write fun stuff I’d be on it like white on rice.

That’s the good news.

And here’s the windup, now the pitch….oh come on, just get it out.  Er, I mean over with.  Well, I really don’t want to.  I want to stay sunk in denial forever.

I had to go see my shrink yesterday to get a form filled out so that I can take Noga, my service dog, on the plane when I go to Israel twelve days from now.  Eek.  Time is running short, and it’s running like hell.  Anyway.  So I go and see Tony my shrink, and he’s a good egg.  The man really loves crazy people.  He’s crazy himself, freely admits it, and also admits that the reason he’s a good shrink is that he’s crazy.

Anyway.  So he likes to talk for a long time, both because he likes the company of other crazy people, and because that’s how he sizes you up and figures out what brand of crazy you are and if you need your meds tweaked or anything else like that.  So we’re talking and he’s really paying attention to me and not just goofing around like he normally does.  So at some point I lose not just a single word, as has been happening a lot lately, but an entire phrase that I needed to have, in order to express what I was trying to, well, express.  I wanted to describe something but lacked a whole phrase and was trying to find alternative ways of saying it.

“How often is this happening to you?”

“Oh, several times a day.  Even when I’m writing, sometimes I can’t think of a word and just have to put a parenthesis and go back and fill it in later when I remember the word.”

He raises an eyebrow.  Not a good sign.  Tony is almost always upbeat and goofing around, because if he can’t make you laugh then he knows you’re really depressed.  Or if he annoys the shit out of you then he knows you’re irritable and wants to know what’s up with that.  But if he raises an eyebrow….that ain’t good.

“You know the meds that they’re using to preserve cognitive function in Alzheimer’s?  They’re using them now to treat cognitive dysfunction in Bipolar.”

My heart fell out and hit me on the toe.  I winced.

Last year I felt like my brain was misbehaving, so I had a battery of neuropsychiatric testing that showed a big hole in one part of my central information processing.  I freaked on out and called Tony, who talked me down from my freakout and told me it was a known phenomenon in Bipolar, the older you get.  Great.

So yesterday he gently suggested that since the cognitive issues (he did not say “dementia,” thank God) seem to be progressing, he recommended I try one of these cognitive function preserving drugs.  Far fucking out.

And he also suggested that I go back on the stimulants that I hate and had previously refused to take because they make me feel like shit.  He looked up what I had before and it was Adderal.  He said that sometimes people who hate Adderal like plain ol’ Dexadrine.  He said it might give my brain some clarity and help the cognition to cognate.  So I said all right, and now I have two fucking more pill bottles in my pharmacy.  Why me, Lord, why me?  Oh stop with that whiny shit, Laura, you know very well there are much worse things in the world than being crazy.  Don’t even go there.

Breaking the Silence of Stigma: Ruth Jacobs

Ruth Jacobs no borderWelcome to Breaking the Silence of Stigma, a series of very personal interviews with people who, like me and perhaps like you,       live with mental illness.

It’s only by breaking the silence and speaking out about the reality of living with mental illness that we have any chance of breaking the stigma that surrounds it.  It’s a silence that suffocates, that increases suffering….it’s a silence that kills.  

Our inaugural interviewee is the very brave Ruth Jacobs, published author, campaigner against sex trafficking and human rights violations, blogger, and mother.

Breaking the Silence of Stigma: Ruth, how long have you known that you are living with a mental illness?

Ruth:  Over twenty years.

BSS: Can you share with us your diagnosis/diagnoses?

Ruth: I have post traumatic stress disorder and bipolar – although the bipolar diagnosis is being reviewed by a new psychiatrist.

BSS:  When were you diagnosed with these?

Ruth:  I was diagnosed with a mild bipolar-like illness, cyclothymia, about fourteen or so years ago I think. It’s hard to remember as before then I had various other diagnoses. The bipolar worsened over the years until it was finally diagnosed bipolar type I.  I can’t remember when the post traumatic stress disorder was diagnosed, but certainly years after I first suffered symptoms.

BSS:  How were they diagnosed?  Did you have any special testing?

Ruth:  I am pretty sure the diagnoses have just been made from sessions with psychiatrists as an outpatient and inpatient. I don’t remember any special testing, though having said that I have a vague memory of wires attached to my head, but that might be from something medical; my memory is not good, which is probably caused by the PTSD, though could be from the numerous overdoses I took in my twenties.

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

Ruth:  I have been hospitalized a few times. I can think of six but it might be seven. And actually it’s not all for my mental illness on its own, but mostly because I self-medicated with drugs. I had psychosis from crack a few times and I was a danger to myself so being hospitalized helped keep me safe for that period, but didn’t help with my mental illnesses. I was unhelpable most of those times because I wasn’t willing or wasn’t ready to give up drugs. When you are an intravenous user of heroin and crack, there isn’t much a psychiatrist can do about your mental illnesses.

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

Ruth:  I have had so many medications and concoctions of medications, always with side effects though to varying degrees of severity. Most recently, a new psychiatrist has taken me off all medication so she can reevaluate the bipolar diagnosis. I am pleased about this, as I do prefer not to be on medication due to the side effects.

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

Ruth: Thankfully, I have never had that.

BSS:  What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

Ruth:  I have had years of therapy, mainly individual though also in groups. Sometimes it has helped, other times not. I found eye movement therapy, EMDR, worked extremely well for some symptoms of PTSD, especially flashbacks, but it also reduced nightmares too. I had NLP at the same time and I believe that helped particularly with anchoring – something that has been very hard for me to cope with.

BSS:  How has your illness impacted your life?  Things like jobs, education, relationships, children, alcohol and drug abuse, etc.?

Ruth:  It’s affected all of it but I have to try to make the best with the cards I’ve been dealt. Although I can’t work full time at the moment, I still have writing and that’s a very important part of my life. I am sure it was my illness that enabled me to write my book; and I wouldn’t have had the knowledge without having lived the life.

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

Ruth:  Believe that no one is ever beyond hope. Reach out for help. Be honest – let those people know how you feel and what you need so they know how to help you. Don’t give up. If a medication isn’t working, ask to try another. If a therapy isn’t working, request a referral for a different kind – do your own research where necessary. If you don’t agree with your diagnosis, see if you can obtain a second opinion. If you are uncomfortable with your psychiatrist or other service provider, do what you can to be put under the care of another. I’ve found it helps to connect with other people also living with mental illness. So many people don’t understand and believe there is a way to ‘think’ yourself out of being mentally ill. In my depression, when it is already severe, this ludicrous belief is extraordinarily hurtful.

BSS:  Thanks so much, Ruth, for your incredibly candid interview.  It takes a lot of courage to break the silence of stigma.

Ruth Jacobs’ novel, Soul Destruction: Unforgivable is published by Caffeine Nights.

SD-front border

Read more about Soul Destruction, and about Ruth’s human rights campaigns, and her own brilliant interview series here.

Read Ruth’s blog and Soul Destruction Diary here.  While you’re there, consider picking up a copy of In Her Own Words….Interview With A London Call Girl, an interview that Ruth did during her research into prostitution in the 90′s.

Ruth’s recommended links:

Eric Le Clown graciously asked me to write a piece for his blog Rx Black Box Warnings, so I took the opportunity to write something I’ve had rumbling around in my brain, oh, forever. This is really how I feel, the locked-in feeling of alienation, marginalization, and, well, being on the wrong planet.

P.S. all of this is true.

Five Major Psychiatric Disorders Genetically Linked

In the largest genetic study of psychiatric illness to date, scientists have discovered genetic links between 5 major psychiatric disorders.

Investigators from the Cross-Disorder Group of the Psychiatric Genomics Consortium have found that autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), bipolar disorder (BD), major depressive disorder (MDD), and schizophrenia share common genetic risk factors.

via Five Major Psychiatric Disorders Genetically Linked.

Hmmmm.  Looks like what we already know from our own experience is being borne out by science.  That’s validating.  But even better, the specifics are being discovered, which explain the mechanisms of how our brains differ from neurotypicals.  This will inevitably–and quickly, it looks like–lead to the ability to diagnose specific neuropsychiatric conditions with a simple blood test.  And this, in turn, will bring to a close the era of trial-and-error medication.

The fact that these 5 disorders are very closely linked and, in fact, often overlapped, explains why so many of us have features of more than one illness on objective testing.  And it explains, to me anyway, why so many times medications just do not work, sending us on a seeming merry-go-round of medication trials.

I will never forget the time a rather dull psychiatrist had me on an SSRI, and it was not helping my depression (because she had failed to make the diagnosis of Bipolar Disorder), so she upped the dose until I was completely zombie-fied.  Then, when I complained of oversedation, she prescribed Provigil, a powerful stimulant used to treat narcolepsy, or to keep Air Force pilots awake for 48 hour shifts.  That put me in the hospital.

These results explain why so many of us are On The Spectrum and also have MDD, or are Bipolar and have ADD/ADHD.  Or, very hard to treat, Bipolar plus MDD, which makes medication selection maddeningly difficult, because treating bipolar depression is NOT the same thing as treating Major Depressive Disorder, and vice versa, so it often happens that either the MDD is treated and triggers a manic episode, or the BP is treated and the person is still plagued with persistent depression.

And there’s another piece of good news here: having a “physical” genetic illness that can be seen and quantified takes Mental Illness out of the “it’s all in your head, snap out of it” category.  We will be seen as people who have “legitimate” genetic disorders like Celiac Disease and Cystic Fibrosis.  I’m hoping this will dial the stigma factor way, way down.

Let’s hope.

It’s Not Easy Being Brilliant

Last night I had the strangest dream.  I was walking down alleys in some foreign country–it might have been Morocco, judging from what I saw in store windows.  I have never been to Morocco, but I went to the Moroccan restaurant in Disney World and had some fantastic food.  And a store that I frequent in Jerusalem, Rika’s, carries Moroccan stuff, everything from clothing to solid brass mortar and pestle sets, which I regret not getting when I moved to the States.  Never mind, I’ll get one when I move back 🙂

Anyway.  Back to the dream.  I was consumed by anxiety because I was supposed to meet with someone at a restaurant somewhere around there, and I couldn’t find it and my cell phone had turned into a wristwatch, courtesy of Dick Tracy I’m sure.  So I had no way to locate the place, or to tell the people I was going to meet with that I would be late.

In my growing state of panic, I turned out of the narrow lanes and found myself in a cityscape not unlike the South Side of Chicago, which is where I did my undergraduate work.  Dreams, right?  I decided to just let my intuition guide me, since I had no other guidance, and found myself in an underground mall full of fast food joints and cheap clothing stores.  I wandered through the passages in the mall until I found the restaurant: a shiny, upscale place full of chrome and stainless steel, very unlike the people I was going to meet.

And those people were:  my ex-husband, his wife, and my ex’s sister’s husband.  I joined them and apologized for being late, but they were very understanding.  We got right to the reason for the meeting, which was:  my ex was having a breakdown because of the guilt he suddenly felt for how he believed he had treated our son when our son was little.  I was shocked, because although they didn’t have a lot of contact for a few years, I didn’t think he had done anything more than most parents do in the way of mistakes, and he had already been forgiven for those.  But there he was, crying and begging me for forgiveness.  I didn’t know how to feel.  Ah, dreams.

In a few days we will celebrate our son’s 28th birthday.  In the Hebrew system of numerology, 28 is the number for “strength.”  I bless our son to have lots of strength, for now and for many, many healthy years to come.

He was not an easy child to raise.  The brilliant ones never are.  He always wanted more, and better, and faster; but at the same time he would get overloaded and have classic melt-downs, needing to be bear-hugged until he calmed down enough to go to his room and totally wreck it.  And he wasn’t so good with children his age.  In kindergarten he absolutely refused to participate.  I went to the child psychologist he had been seeing since age three, and together with the teachers we worked out a behavioral contract: for each five minutes that he cooperated and participated in class, he got to do whatever he wanted for fifteen minutes.  At first that was reading to himself in a loft they had in the room (he had taught himself to read when he was three).  Then he discovered the laminating machine in the office, and fell in love.  All of his out-of-class time was spent laminating things for the teachers and staff.  I joked that they should have paid him.

First grade was a wash-out.  It was a lovely Quaker school, and each morning the children had a meeting to cooperatively decide what they would learn today.  No dice: my son staunchly refused to participate, and stationed himself in a corner like a wooden Indian.  But somehow managed to get perfect grades on the tests.  Countless phone calls from the sweet young teacher later, I said to him, why don’t you just give him a job?  How about giving him a tape recorder and making him the class documentarian?  It worked.  He followed the class everywhere with his tape recorder.  That was his role.

Second grade was better because the new school had a pull-out Gifted Student program, and not only did he get one-on-one instruction, but he had peers with whom he could interact, that were on his wavelength.  They did stuff outside of school together too, like observing our goats having babies and speculating about how the babies got in there.  Then they observed our stallion in action, and that answered that question.

But then there was the constant bullying, because my son was weird.  Time after time he’d come home crying with a new bruise he’d acquired on the playground or the bus.  Countless phone calls to and meetings with the school principal bore no fruit, as they insisted that the incidents had to be witnessed by an adult, and of course the bullies were smarter than that.

So one day when we were at wit’s end, I said to him, look, the next time someone hits you, you hit ’em back!  And indeed the next day some kid whacked him upside the head while standing in line to get off the school bus, and my son turned around and decked the little bastard.  Oh, didn’t that precipitate an uproar!  The kid’s parents called the principal and threatened to call the police (on a seven-year-old?), and my son was suspended for two days.  But the bullying stopped.  That time, anyway.

After a few years of relative peace, we moved to another state, and there the bullying started anew, and my son stopped doing school.  He went, yes, but once again he stopped participating.   There was a dominant religion there, and the boys used to follow my son around yelling “You’re Jewish and you’re going to hell!”  One day my son turned around and said, “Fine, at least you won’t be there.”  Suspended again, two days.

Things progressed from bad to worse.  He was in seventh grade; I took him for educational testing and he turned out to be working at college sophomore level in reading, and college freshman level in math.  No wonder he wasn’t interested in seventh grade.

But he began to have behavioral issues similar to what he had had as a three year old: tantrums, but now with a simmering anger that frightened me, as he was literally twice my size.  His alternating angry outbursts and silent gloominess had me worried about depression.  We have a long family tradition of depression, and he certainly had both situational and genetic reasons to be depressed.

So I took him to a psychiatrist.  He would not say a word.  The psychiatrist recommended a psychologist, but the same thing happened:  arms crossed, staring at floor.  After five iterations of this, I gave up.  But then I found the suicidal note that “just happened” to slip out of his notebook.  Terrified, I got him into the car by means of screaming threats of calling the ambulance, and drove him to the emergency room, where I showed the note to the doctor and they sent for the psychiatrist on call, who read the letter and asked him if he felt suicidal now.  He shook his head.  Question repeated, response repeated.  Recommend follow-up with regular doctor in the morning.

Please, I pleaded, please just admit him for a 24 hour observation.  This note is really serious.  (As a pediatrician myself, I was trained that there are two kinds of suicide threats:  serious, and more serious.  And this one was more serious, because it specified a plan.)  They sent him home.

Then, it seemed moments later now, the Columbine school shooting happened.  Panic shot through every school in the country.  Some went on lockdown, some installed metal detectors.  Many started conducting regular routine locker searches.  Our school was one of those.

When they searched my son’s locker, they found it stuffed with papers.  Most of them were his homework papers that he never turned in: all done perfectly.  Some of the papers were more concerning: images of guns and missiles and ominous, dark poems about death and mayhem.  They called me in, showed me all the stuff, and threw him out.

It was at this point that I sent him to a wilderness therapy program, one that he couldn’t get out of until he started seriously dealing with his “shit.”  That is a whole ‘nother story, but it was the first of many outpatient and residential treatment programs.  He got into drugs, much more seriously than I had any idea of, as he told me later.  At the age of sixteen he had failed many programs and torn up the family, and his step-mother–I had sent him to live with his father because I couldn’t handle him anymore and thought that being with his dad might help–threw him out.  He went to live with a bunch of gangsters and sold drugs until they thew him out, and then he crashed where he could and ate cold pizza out of the dumpsters.  Somehow we got him into an adolescent psychiatric hospital, and they drugged him into a stupor, and there he lay on couches listlessly watching TV, until some kid started bullying him and he picked the kid up and threw him into a refrigerator, and they threw him out.  So he went to live in a homeless shelter, back to dealing drugs.

Then, serendipitously, he got busted for a small amount of pot.  I called the judge–I worked with the courts in that county a lot and knew all the judges–and begged him to remand my son to long-term residential therapy.  I knew that if I didn’t do something before he turned 18 that he would be lost, in jail, or dead.  The judge did me that favor, and I found a wonderful therapeutic boarding school that helped him find his way out of the hole he had fallen into and discover his wonderful talents.  He also got started on the right antidepressants, and thrived.

And now, bli ayin hara (a Jewish prayer against the Evil Eye, just ignore it), he is working on his Ph.D. in Medicinal Chemistry, doing things with the insides of cells that no one else has done before.  I am so proud of him!  He has taken charge of his mental health issues, working with a therapist and doing DBT.  He consciously cultivates hobbies that round out his life so that he’s not spending all his time in the lab, which he knows he would do if he didn’t do something on purpose to change it.

Looking back on this post, it’s amazing to see how many paragraphs of difficulty and heartbreak it took, to get to this last paragraph of triumph over desperation and despair.  And what I’ve told you is just the tip of the iceberg.  And he still has to work constantly to keep himself on an even keel, and living a healthy life.  But he’s doing it, thank God.  It isn’t easy being brilliant.

 

 

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.