Critical Mass

This is really my first proper blog entry. I’ll do a strenuous restructure and move most of what I’ve written to the “About” area where it belongs, but today I will attempt to do what I set out to do when I started this so many months ago.

The title of this entry is in reference to a story told me in the early 80’s by a friend.  She had a gay friend living in Los Angeles at that time, who was busily infecting as many people as possible with HIV. Though his motive was neither disclosed nor discussed, I can only imagine he was acting on the idea that the more people afflicted, the sooner a cure would be found. Irrefutable logic, though clearly limited in its vision, and gaspingly  unethical.

I’m only surmising, of course, about his motives, but even so I can’t think that anyone whose life has been effectively ended by the disease those of us who share the symptoms of ME/CFS would even consider inflicting them on another human.  Yet I can’t honestly deny a painful, wry sort of gratitude that our cohort has swelled to this point  and we are getting an amount of attention more appropriate to the seriousness of our struggle.

As surely as we know that medicine is all about the numbers, we can be certain that those numbers are underrepresented.  Could it be otherwise when an illness has been deemed nonexistent or purely psychological?  No one will ever be able to assess the number of suicides due to lack of medical, community or familial support if only because there are those people who would sooner die than speak of their weakness.  And even as I write this I know there are people lying alone in the dark, unknown and unable to reach out for help.  I pray that we can find a way to find them, and that help for all of us is right on the horizon.

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And now, without further delay…

For me, the very worst aspect of this disease is the loss of mental acuity. I doubt there’s much wrong with my mind, but my brain has clearly experienced damage. When I finally get an MRI, I know beyond doubt that the lesions on my brain will be clearly visible. I try really hard to make no assumptions not based on irrefutable evidence, but for now, experiential clues must suffice.

But there is a time-line I’m trying to follow. I can’t say that I have complete accuracy, so I’ll submit this to my family and for their recollections.

There are records somewhere, but I can’t tell you the date I was hospitalized with pneumonia. My poor 16-year-old daughter was stuck with an incompetent, nearly delirious mom with a temperature of 105 Fahrenheit. Her innate heroism got me to the hospital and admitted. Throughout her life she’s given me many opportunities to stand agape at her amazing agápē, and there’s no doubt that without this particular example, those opportunities would have ended within a matter of hours.

I am guessing it was about 8pm when I was admitted to Sacred Heart hospital in Eugene, Oregon, in January of 1990.  But I wasn’t tucked into a nice, warm bed and treatment started for what brought me there.  I don’t know whether a doctor ordered it, or whether it was the nurses’ inspiration; I doubt it was standard practice to take the patient’s clothes away and throw her into a cold shower as was done to me.  Begging to be allowed out was fruitless, until I could no longer suppress a scream of pain.

Then I was allowed to cover myself and get into a bed.  And left alone in the dark

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After some short time I began to recognize that I no longer retained even a smidgen of  bowel control and was able to frantically signal until a nurse arrived whom I could alert to the fact that I was going to need a diaper.

I have no memory of anything over the next three days except a fleeting impression of my daughter washing my feet.  She later told me that it was excrement she washed away, in the Intensive Care Unit.  Forgive me, but I can’t help wonder how intensive care can be that leaves excrement on a patients feet?  It seems less than basic to me.

If there is any question, the freezing shower sent me into shock and I lost consciousness.  I wonder if I would have survived if I hadn’t been able to signal the nurse?  Seems fairly likely that they’d have found a corpse the next time they were scheduled to check on the patient in Room 206.

I spent another 7 days in that hospital, learning during that time that I had “triple” pneumonia, of which I’d never heard.  I guess it’s bacterial with 2 kinds of virus?  (I’ve since learned that there is such a thing as fungal pneumonia, which has to have been the 3rd component, since the house I was living in at the time had to have been full of mold.  [Edited 07/15/2018.])

At any rate, the treatment was intravenous antibiotics  and antivirals (I believe) and respiratory therapy.  That therapy consisted of a practitioner applying a device to my back that pounded mercilessly, with the aim, I’m sure, of breaking up the mucous in my lungs so I could breathe.  I was ungrateful, though, because having that pounding applied to the area of my shoulder that hurt so much I could barely use my arm was like intentional torture to me.  But I didn’t complain then, and I’m not complaining now.  This is a report.  I’m presenting an explanation with no emotional component: just the facts, folks.

I was able to start taking walks around the hospital corridors, to re-tone my muscles, two days before I was released.  No one suggested that, but I’d been a runner until a knee injury precluded that especial joy, and I’d been walking to work for the 5 years I’d held my final job, and of course hiking, backpacking, and climbing had always been my favorite recreation(s).

And within a few days of my return home, I was able to start walking my daughter to school; perfect training for the birth that was to come in a matter of weeks.

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Committed

More than 2 hours is too much time to spend trying to figure out how to add the badge that I just installed. But of course it is worth it, ultimately.

Back to the saga:

It was late October when I discovered my pregnancy. I couldn’t believe it, because I hadn’t engaged in any risky behavior, to my knowledge, yet the test results were clear.

Two days later I was still trying to process the idea, when I experienced what was unquestionably a miscarriage. It was another month before it occurred to me that I ought to confirm that I was no longer pregnant, and sure enough, the next test read negative. But when yet another month had elapsed and my periods hadn’t resumed, it seemed wise to see what my doctor would say about the situation.

What he said was: “Oh, you’re pregnant, all right.”

Failed contraception and an inaccurate pregnancy test? Hadn’t I had a miscarriage? That had been a twin, he explained.  It was all too coincidental, just not possible, truly unbelievable in my view.  So he sent me for an ultrasound.

I don’t know when the machines became common, but it was all new to me: the icy gel and freezing reader (whatever you call the device the operator slides around your belly area), the screen I thought was an oscilloscope…then, there he was.  All the fingers, all the toes he would ever need, and he was exercising them!  How could I not feel this guy moving around?

Back to my doc, and of course I agreed with him that an amniocentesis was essential.  Good heavens, I was 42 years old, and my youngest child was sixteen!  But there were no abnormalities, and by the time the results of the test came in, I was about 5.5 months pregnant, far too late for an intervention.  My son knows I adore him, but I still feel I should apologize to him for how much his existence owes to chance.  I really don’t believe I am to blame for this disease, but I certainly regret that I was not the kind of parent a child deserves because of it.

It was not long until my doctor sent me to a town 25 or so miles away to see an orthopedic surgeon he knew who might be able to diagnose my pain.  She examined me by pressing many areas  on my body, and when finished she elucidated:

“This is called Fibromyalgia.

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There goes my health insurance!

I do realize that office politics are inevitable, but I never found a way to equip myself to deal with that sort of thing.  In retrospect I can see that there were other options, but I think that by the time of my firing my brain function had already decreased to a less than competent level.

So it was that when I was told that I was losing my job because I’d been missing work while also being in rehearsal for a play, I explained that I couldn’t be fired, or at least shouldn’t be, because that would leave the company open to a wrongful termination suit.  I could safely be laid off, of course.  Better I had kept quiet, since the state of my health prevented me from looking for work, a condition of collecting unemployment benefits.

No better time to deal with the play: I had not sought out the part, but had been approached by the producer, at a time early on in the illness when I imagined the condition would resolve itself.  I tried to explain the situation, and suggested that it might be safer  to seek another actor for the role, but  in the end I was convinced that it  really was  a positive possibility.  Ironically, it was during this production that I experienced the only instance of chemical sensitivity I can pinpoint with certainty.

Something in the performance space: an art gallery, was off-gassing, causing me to cough.  It happened nowhere else,  and the effects worsened the longer I stayed there breathing whatever it was, so that by the end of each evening’s performance I could barely get my lines out.  My reaction seemed cumulative over time as well, in that each time I was exposed was worse than the day before.  By the end of the run I was pretty certain that my reputation as a performer was ruined.

So even though there was no relation between being able to be in a play and being unable to do my work, I did lose my job.

I then learned I was pregnant.

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Which came first…the napping or the pain?

I can say unequivocally that this was not a sudden onset situation.  Somewhere in the late Spring or early Summer of 1989 I began to need to lie down for an hour’s nap when I got home from work before I could make dinner.  At around the same time I began to notice a pain in my right shoulder. Utterly unpredictable, it was sometimes a dull ache, though usually a sharp stabbing pain, or more like a knife embedded in my back being constantly twisted.  It would go away for days at a time, so it seemed likely to go away forever, but then each time it came back it was worse and stayed longer, until it didn’t go away.

I became unable to work: I could barely use my arm, and the pain was so severe at times that I couldn’t carry on normal conversation.  I could only imagine that it was some kind of repetitive motion injury, from reaching to answer the phone, probably.

I went to a chiropractor, (after having my family doctor tell me he thought it would just go away),  for several treatments which had no effect whatever.  That chiropractor suggested an acupuncturist, whose treatment did provide some short-lived, inadequate relief.  Back to my family doc, who sent me to an orthopedist who x-rayed me and moved my arm about so roughly it brought tears to my eyes; he told me it was a all in my head.

Then I lost my job.

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Better Beginning

As can be seen, I’ve not made much progress getting a grasp on this.  But I can see that what I have been able to type has been retained, and that gives me some reassurance.  If I could start over, I’m not sure that would be helpful, but I do think I should start from the beginning.

Trouble is, anyone’s guess is as good as mine when that was.  So maybe a quick medical sketch is in order. Not really a lot to that, since I was pretty healthy most of my life, despite being born a “blue baby”.

Early on, though, at about 12 months of age, I was hospitalized with “double” pneumonia.  At that time I lost about half my body weight.  Both parents smoked.

Aside from what could be a significant head injury at age 16, (hit in the head with a thrown baseball bat while serving as umpire), I don’t know that a history of breakage, burns and sprains would reveal anything but that I was an active and adventurous child.  I remember that I had mumps on my 6th birthday and being upset because I’d been told for years that I had to be six to go to school and expecting that meant that when I turned six I could go to school.  Colds and flu just about average, I’d guess.

However, as a senior in high school, in 1965, I contracted mononucleosis, otherwise known as the Epstein-Barr virus.  Missed about 8 weeks of school, and everything else.  Less than a year later, while living and working with the National Farm Workers Association in Delano, California, an examination by a volunteer doctor revealed I had “walking” pneumonia.  A couple of days in bed at most.  I had requested that same examination because I’d found a lump about the size and shape of a small chicken egg in/on my throat.  I was told it might be serious, but then again, maybe not.  I chose the “not”.

And in fact, there were no observable effects from the lump between that time until it was removed 3 years later in Northampton, Massachusetts.  It was benign, and apparently not related to my thyroid by other than proximity.  Any ideas what it was?

At age 20 I developed temporomandibular joint disorder, but it was resolved without treatment after several months.

As I said, I was mostly healthy, and the births of my children were remarkable only in their ease.  I had been ill for a few months during my second daughter’s gestation, but recovered as soon as we started heating the house.

I mention breaking 2 vertebra in a cherry-picking accident, (the limb I was sitting on broke), along with numerous injuries inflicted at around the same time only because fibromyalgia is frequently associated with physical injuries.  The gap of time between these incidents and the onset of irrefutable fibromyalgia symptoms makes any association (unless there’s some connection with PTSD), seem unlikely to me.

One oddity of note is the funny little dime-sized patch of black, pore-sized dots that appeared on my wrist during a backpacking trip to the Kalmiopsis Wilderness in, I believe, 1987.  Though that disappeared, a similar one showed up just above my knee several months later,  also gone within a couple of days.  These were never around long enough to be examined by a doctor, and no doctor I’ve mentioned them to had any idea what they might be.

During the winter of 1988/89 I had a persistent sinus infection…and I can see I’ll need to return to this at a later time.

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Woman Overboard: Taking the Big Leap

I don’t think it’s been well enough established how utterly at sea I am here, but I have to just jump right on in with trying something that seems weeks down the line as far as my experience with blogging goes.
I could just post a link, I suppose, but those things have a way of disappearing. In fact, I had e-mailed a link to what I thought was the video I’m going to try to embed here to my daughter and a friend yesterday. This morning I wanted to look at the video again and opened the Firefox tab where I expected to find it, but it was gone. I didn’t think to check the history to try to find it, but went instead to my e-mail to find the link I’d sent out. That was how I learned I’d sent the wrong link.
Because of the nature of the video, I had a very paranoid reaction and made the immediate. and it turns out incorrect assumption that it had been removed from the internet. How relieved I was that I’d downloaded it and had a copy on my machine!
Couple of disclaimers: I’m not a pothead. I in fact detest that I have to take the drugs I must for pain. Vicodin and Oxycontin are, I now know, drugs that are used recreationally, but they have no recreational effect for me. In fact they are inadequate for me as pain suppressing medications.

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What Is Meant by Brain Malfunction

Below is a quote from Dr. Sarah Myhill, a British physician who specializes in Chronic Fatigue Syndrome. Since Fibromyalgia and CFS overlap in symptoms, many consider them to be iterations of the same disease.

What I mean by brain fog

  • Poor short term memory
  • Difficulty learning new things
  • Poor mental stamina and concentration – there may be difficulty reading a book or following a film story or following a line of argument
  • Difficulty finding the right word
  • Thinking one word, but saying another

I hope it’s acceptable to use this quote without permission.

I must say that for myself, reading has become a nearly insurmountable challenge.  I usually have to read a paragraph a minimum of 3 times to make any sense of it.  Which makes writing a fairly ironic activity.  But I feel it could be worthwhile to try to document my quest for help to the degree that I can.  The worst problem with this is that I really can’t be sure that I’ve remembered everything.

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Hello world!

Quite the Curve

This is my first attempt at creating a flog, and however simple it may intrinsically be, it’s a monumental challenge. Flog… heh; I wrote blog, but since I’m using handwriting recognition software with an old Wacom Intuos tablet, I get some often amusing interpretations. And it’s easy for thongs to slip by.  Yeah, things like that.  Yet that’s not so much of an impediment, really; the bigger problem is the learning curve for someone who lacks a fully functioning brain.

If I’d had an accident that resulted in clear brain damage, you’d understand that easily enough, probably.  But I’ve been diagnosed with fibromyalgia, and NO one really understands that yet, as far as I can see.

The ability to string some sentences together in a fairly cohesive fashion is not irrefutable evidence of  competence.

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