Daily Archives: December 17, 2012

Crashing

Things have been copasetic for the last week or two, notwithstanding a few ugly nights, mostly taken care of now by a bedtime dose of clonazepam.  I hate the stuff, but what can you do.

Then last night I stopped by my parents’ house to deliver something or other, and my mother was in one of her bad moods.  It had something to do with something I had or had not done; I don’t have the time or patience to keep track anymore.  Besides, it isn’t my business.

She was watching one of her interminable movies.  She keeps the movie channel going as soon as “Wheel of Fortune” goes off, and often stays on the couch watching movie after movie until midnight.

The movie she had on last night caught my eye, because someone was having a baby and screaming bloody murder.  Of course, being a doctor, that would be an eye- and ear-catcher for me; so I stayed on to watch a bit.  Turned out to be a baby girl: mazal tov.  But the mother said: “I’ve hated this baby since she was in my womb.”  Blood-chiller.  I watched the rest of the movie.  It was all about how this baby girl was unwelcome, and the next one, a boy, was the apple of the mother’s eye.  The girl was shut out of everything.  Understandably, she grew up bitter and depressed, but she made herself a success in her profession and at least derived comfort from that.

The discomfort in the parental living room was thick as molasses in the winter.  My mother stayed in her movie-induced trance, but I could feel her frozen to the couch, her breathing shallow.  Through the darkened room I perceived the pallor of her face.

I myself was sweating, heart racing, in the throes of a full-throttle panic attack.  But I couldn’t stop watching the movie: it was my life laid out before me, except that I had no brother.  The brother in my life was my older boy cousin, who could do no wrong.  Like the girl in the movie, I love him dearly and do not fault him for his place of honor, and he himself has no idea that he is king in my mother’s eyes.

I finally couldn’t stand it anymore and headed out to my own digs down the hill.  I took my pills and went to bed.

This morning for some reason it occurred to me that I probably should read the judge’s disposition on my recent social security disability hearing.  In the eight page document, I learned that I have had PTSD since I was a child, that I have struggled unsuccessfully with major depression, bipolar disorder, ADHD, dysthymic disorder, OCD, and a few other items that I have forgotten since this morning.  All of these were backed up by citations from the records of my various doctors.  G-d in heaven, what a soup.

The disposition goes on to describe how I managed to struggle through until April 4, 2000, when I fell off the balance beam and decompensated, and have remained in a more or less permanent state of mental disability ever since.  There is no hope for my ever returning to any kind of work because of the unpredictable nature of my disease.  In addition, my reclusive lifestyle precludes my forming any meaningful social bonds, so it is improbable that I would be able to integrate into any work environment.

Of course I knew all this; how could I not.  But seeing it laid out that way by a federal judge is a dash of cold water in the face.

I worked really really hard to overcome my demons during my life.  Now it seems I have another round of demons to take on: the ones that whisper in my head, “You’re no good.  You’re useless.  You’re no good to anybody.  You’re a burden to your family, and society.  You take up money that could be used for better causes,” etc. etc.

I’m making dinner, and I’m going to force myself to fucking eat it.  Then I’m taking my drug cocktail, with an extra Seroquel (at the suggestion of my doctor) and I am going to bed.  If I need to, I will sleep all day tomorrow too.  Then I will get up and go on with life, because that is all that remains to me of health and dignity.


Romantic MDay – Advice from the Looney Bin

Just another Romantic Monday. Can you hear what I am singing?  (Bangles Manic Monday.. ??)  ok well yea I also see what I did there… I said MONDAY.  Ouch .. like it stuck in my craw but I need to get over this irrational fun..or no never mind.   That would be silly.  Anyways here … Continue reading

‘The Sorrows of…’

…Young Werther’ is a book by J. W. v. Goethe. It is a tale of youthful passion, unrequited love and the introspection that brings.

The character Albert, a friend of the narrator, argues that ‘… it is easier to die than to endure a harrowing life with fortitude.’  Werther responds that ‘… it would be as misconceived to call a man cowardly for taking his own life as it would be to say a man who dies of a malignant fever was a coward.’

Is Albert right?

He raises a fundamental question about our capacity to bear pain; mental pain, and the anguish that physical pain brings. Werther seems to equate the act of suicide – involving a decision, or series of decisions – with death caused by illness, where no decision is involved. But decisions are involved in ending a life; it’s called palliative care. Pain killers used to ease the patient on their way, is the obvious example.

Young Werther

For those of you wondering what connection I am making with cycling in this post – there isn’t one.  I have been feeling grotty now for weeks, so grotty the thought of riding my bike anywhere is too much to contemplate.

Why is it better to bear ‘a harrowing life with fortitude’?  I have written about the ancient Greek and Roman philosophy of Stoicism before, but this isn’t the aspect of this issue that I want to concentrate on here.  It is the underlying assumption that suffering makes you a better person. In modern parlance – ‘what doesn’t kill you makes you stronger’.

Really?

What doesn’t kill you destroys your life but keeps your vital organs plodding on, is more like it.  This is the position known as the Quality of Life Argument.  Who decides what counts as a sufficiently good quality of life to justify keeping going despite a ‘harrowing life’?  Sometimes it’s the person themselves.  People who travel from countries that do not allow physician – assisted suicide to the Swiss organisation Digitas to end their lives are making those assessments.

I am not advocating for suicide, as I have explained in earlier posts. I have been plagued by persistent suicidal thoughts over the past few weeks, and all I am saying is that I am sympathetic to the position that says suicide is another form of pain relief.

To hell with fortitude. Character – building?  Who decides whether that’s the kind of character I want?

The Wound 

The huge wound in my head began to heal

About the begining of the seventh week.

Its valleys darkened, its villages became still:

And constantly my mind returned to Troy.

After I sailed the seas I fought in turn

On both sides, sharing even Helen’s joy

Of place, and growing up – to see Troy burn -

As Neoptolemus, that stubborn boy.

I lay and rested as prscription said.

Manouvered with the Greeks, or sailed out

Each day with Hector. Finally my bed

Became Achilles’ tent, to which the lout

Thersites came reporting numbers dead.

I was myself: subject to no man’s breath:

My own commander was my enemy.

And while my belt hung up, sword in the sheath,

Thersites shambled in and breathlessly

Cackled about my friend Patroclus’ death.

I called for armour, rose, and did not reel.

But, when I thought, rage at his noble pain

Flew to my head, and turning I could feel

My wound break open wide. Over again

I had to let those storm – lit valleys heal

Thom Gunn (1929 – 2004)


Coming Out Bipolar, Round 1

Disclosing mental illness is complicated. So much depends on context that the only guides on how to go about disclosure …

Continue reading »

Blah

Yesterday, I got bitchslapped with a wave of sad. And of course, for absolutely no reason; the worst thing that happened yesterday was that Sims crashed while saving 0h teh noes, the horror).

The thing is though… I can feel the sad. I can taste the sad. It’s as if a wave of Chemical Sad was released into my system, flooding it with its gellid jelly bitter flavour. It’s coating my tongue, it’s flooding my veins, and I just have to say – how in the flying fuck is someone supposed to stop that? Applying logic and CBT is a bit like trying to get by on a sailboat made of rice paper — said boat is buried and subsumed under (and melted by) the hormonal/chemical/what the fuck-all assault. It’s sort of definitely lame.

Don’t worry — I’m not giving up, even if it’s totally tempting to climb into a hole and pull the hole in after me. I’d be lying if it said it wasn’t effecting me though; while I might have turned out another crochet hat last night, the thought of doing proper chores is hitting a blank wall of [[not happening]]. It’s that stage of things where I find myself trying to drag myself onward and upward, but the walls are too slick and my nails are too short (because my brain freaked out and insisted to make them all go away by any means possible; all the joys of self-sabotage).

Back to trying to get some blood out of my caffeine stream (my attempt to get a bit of extra sleep backfired last night and now I feel like semi-zombie hell), and trying to make myself do something useful, like fold the laundry from *coughtwoweeksagocough*.

<3

If It Doesn’t Walk or Quack Like a Duck, Is It Still a Duck?

Dear readers, this post is going to be indelicate.  It will mention bodily functions.  It is about bodily functions.  So if you have a delicate constitution, or just don’t want to go there, I won’t be offended if you stop reading right now.  However:  It is also about the way we neuro-atypicals are treated by the medical establishment when our body functions go wrong.  It is about the fact that we are pigeon-holed from the word “hello,” according to our medication list, and that we are, through the jaundiced eye of stigma, often the recipients of substandard care.

In a previous post, I discussed a medical aphorism: “If it walks like a duck, and quacks like a duck, then it probably is a duck.”  The simple meaning of this, of course, is that if a person exhibits the symptoms of a disease, then they probably have that disease.  Take, for instance, a case of appendicitis: if the person has severe right-lower-quadrant abdominal pain, with or without vomiting and/or fever, and certain specific signs on physical examination, then that person very likely has appendicitis.  Or migraine: severe one-sided headache, an aversion to light, perhaps with vomiting.  I’m sure you can think of your own examples.

What about Irritable Bowel Syndrome (IBS)?  Conveniently, there are a set of specific criteria called the Rome Criteria, which were developed by the Rome Foundation.  These are:

C1. Irritable Bowel Syndrome Diagnostic criterion*
Recurrent abdominal pain or discomfort** at least 3 days/month in the last
3 months associated with two or more of the following:
. Improvement with defecation
. Onset associated with a change in frequency of stool
. Onset associated with a change in form (appearance) of stool
* Criterion fulfilled for the last 3 months with symptom onset
at least 6 months prior to diagnosis
** “Discomfort” means an uncomfortable sensation not described as pain.
In pathophysiology research and clinical trials, a pain/discomfort frequency of at least
2 days a week during screening evaluation is recommended for subject eligibility.

Bolding is mine, to call attention to the fact that the single overarching diagnostic feature is recurrent abdominal pain or discomfort.

I have reason to be researching this condition, because I do not have it.  I have something else that has caused my intestines to misbehave badly.  I will tell you why I’m bringing this up in a minute.

Now that we have looked at the Rome Criteria (which, as paltry as it is, happens to be the “gold standard” for the diagnosis of IBS), we must consider some factors that absolutely rule it out.  Things that do not walk or quack like ducks.

The biggest, baddest one is unintentional weight loss.  If a person has IBS, by definition they do not lose weight.  Conversely, if they lose weight, they do not have IBS.

Onset in middle age is another factor that calls the diagnosis into question.  IBS generally starts in late adolescence or early adulthood.

But wait: if you have a mental illness, all bets are off.  Listen to this introduction to the subject by an author on Medscape, the physician’s information superhighway:

Irritable bowel syndrome (IBS) is a functional GI disorder characterized by abdominal pain and altered bowel habits in the absence of specific and unique organic pathology. Osler coined the term mucous colitis in 1892 when he wrote of a disorder of mucorrhea and abdominal colic with a high incidence in patients with coincident psychopathology. Since that time, the syndrome has been referred to by sundry terms, including spastic colon, irritable colon, and nervous colon. (Bolding mine.)

And after two-thirds of a page describing the physiologic understanding of the illness, this paragraph follows:

Psychopathology

Psychopathology is the third aspect. Associations between psychiatric disturbances and irritable bowel syndrome pathogenesis are not clearly defined.

Patients with psychological disturbances relate more frequent and debilitating illness than control populations. Patients who seek medical care have a higher incidence of panic disorder, major depression, anxiety disorder, and hypochondriasis than control populations. A study has suggested that patients with irritable bowel syndrome may have suicidal ideation and/or suicide attempts strictly as a result of their bowel symptoms.[2] Clinical alertness to depression and hopelessness is mandatory. This is underscored by another study that revealed that patient complaints that relate to functional bowel disorders may be trivialized.

Let me ask this simple-minded question: is it possible that someone with a debilitating physical illness could develop a reactive depression as a result of having to run to the toilet 10 or 20 times a day, never knowing when the desperate urge might strike?  Is it possible that a person, after being housebound as a result of this illness, might become suicidal?  How about if that person, despite intense suffering without respite or relief, is repeatedly told that there is nothing physically the matter, and it is “all in their head”?

I will give the author credit for the following statement:

“Whether psychopathology incites development of irritable bowel syndrome or vice versa remains unclear.”

The remainder of the section goes on to list a host of physical pathology noted on colonic and small bowel biopsy; this, in spite of the fact that the entire premise of the article is to maintain that there is no evidence of physical pathology in IBS.  Curious, that.

The point that I would like to drive home here, is that anyone with a psychiatric diagnosis who walks into a physician’s office complaining of abnormal digestive symptoms for more than three weeks is going to be labeled with IBS, whether their symptoms match the Rome Criteria or not.  In fact, a recent position statement by a GI professional organization stated that diagnostic testing beyond a simple blood count is unnecessary if the demographics suit the diagnosis and no alarm symptoms such as dramatic weight loss are present:

The 2009 American College of Gastroenterologists (ACG) evidence-based position statement on the management of IBS does not recommend laboratory testing or diagnostic imaging in patients younger than 50 years with typical IBS symptoms and without “alarm features”. Alarm features include the following symptoms and history:[14]

  • Weight loss
  • Iron deficiency anemia
  • Family history of certain organic GI illnesses (eg, inflammatory bowel disease, celiac sprue, colorectal cancer)

While rectal bleeding and nocturnal symptoms have also been considered alarm features, they are not specific for organic disease.

As a physician I find this shocking.  I can think of many possible pathologies that would cause abnormal bowel movements with or without abdominal distress, such as giardiasis, lactose or fructose intolerance, gluten intolerance, hepatitis, pancreatitis, diverticulitis, even appendicitis, that could cause such symptoms.  And given the fact that physicians today rarely lay a hand on a belly, many such problems could simply be written off as IBS.

My feeling is that IBS is simply a wastebasket name for “we don’t know what’s causing it, therefore we will trivialize it.”  Just think about fibromyalgia, and how it was written off for so long as “psychosomatic.”  Now there is a wealth of information about the pathophysiology of the illness; doctors take it seriously and even prescribe medicine for it.  I don’t think IBS is one entity.  I think it is a cheap moniker for a host of different enteric illnesses that have not been adequately described; and on the other hand, it is a convenient way to get rid of a pesky patient who doesn’t have something cut-and-dried like ulcerative colitis or Crohn’s Disease.

Of course I have a personal stake in all this.  Four years ago my immune system crashed.  I got all kinds of weird viruses that you’re not supposed to get in adulthood.  My doctor thought I had AIDS so I had test after test, and after four negative HIV tests they finally decided I didn’t have it.  Then my intestines began to refuse to digest my food.  I lost 30 (yes, thirty) pounds, all the while eating like there was no tomorrow, because I was starving hungry.  My body wasn’t getting any food!  I got vitamin deficient; I developed a rare anemia from lack of folic acid.  I broke my wrist because my bones had become brittle from lack of Vitamin D absorption.  My calcium level was on the floor.  I was in a foreign country at the time, and didn’t understand the language well enough to communicate with the specialists, so many tests went by the wayside.

Being a physician myself (which is not always an advantage when dealing with other physicians’ egos), I put two and three together.  I have had recurrent bouts of bronchitis and pneumonia since I was born.  I had developed malabsorption.  Then I got a nasal polyp, just to complicate matters.

These three items add up to one thing: cystic fibrosis.  At age 55?  I started doing the research.  Yup, it happens.

I got back to the States and cajoled a gastroenterologist into ordering the genetic testing for CF.  Yup. Positive, but in the carrier state.  She sent me to a CF center for a sweat chloride test, which is the gold standard for diagnosing CF.

The test value for absolutely negative is 20.  The value for absolutely positive is 60.  I came in at 58.  Twice, because they couldn’t believe it wasn’t a lab error and repeated it.

They tested my pulmonary function.  I have been a runner all my life, which helps me breathe.  I played wind instruments for 30 years.  I am a singer.  My lung function in 1981 was 150% of normal.  Now it is 110% of normal.  They said I can’t possibly have CF because if you do, your lung function decreases by 2% a year.  Do the math.

In the meantime, one GI doc literally threw a prescription for pancreatic enzymes at me from across his desk, because I was sitting there weeping.  I took them, and magically began digesting my food.  I regained 20 pounds over the next six months on the enzymes. In CF, you lose your own digestive enzymes and have to take them in pills.

Despite all this, when I went back to my GI doc last week for a recheck, she announced that she thinks I “just have IBS.”  I was floored.  I said, What about the fact that taking enzymes fixes it?  She says, Oh, sometimes that can happen.  I said, What about the fact that I have never had any pain?  She made a face.  I said, What about the fact that I lost 30 pounds before starting enzymes?  She snorted and ordered a very invasive and expensive test to look at my pancreatic ducts with an endoscope, and left the room.

Who’s the quack here?