SJOGREN'S SYNDROME

Mary Scriver with nice red cheeks.

When my mother-in-law was in her Eighties, basically healthy but beginning to show signs of age, she was indignant that when she had some disorder with a fancy foreign name (which made her proud because it was distinctive), it always turned out that all her friends had it, too.  Meniere’s syndrome, an inner ear problem which made her walk like a drunk; diverticulitis which made her stomach hurt and so on.  She probably had diabetes 2 by today’s terms, but no one knew about it then.  Likewise, I never heard anyone talk about Sjogren’s syndrome.  

But it appears I have it.  Not that it’s much, just a pesky marginally auto-immune disorder.  No doctor has said I have it, but no doctor in the half-dozen years I’ve been complaining about my eyes has anyone talked about ocular rosecea, though the telltale scaly patch on my bright pink Scots cheeks is right under the eye I complain about the most.  Finally my eye doc talked about “dry eye syndrome”.  In the internet era, that’s enough of a clue to unravel what’s happening.

He didn’t say what to do about it, except use eye drops, but I soon found out about using hot compresses (washrag under the hot water tap, maybe with a bit of baby shampoo) to soften and remove the thread of hard white rime that I’d never noticed before.  Do that morning and evening, use drops, and — hurrah — the eyes are comfortable again.

But then I got to thinking about the fluids of the face.  Sometimes if I’m a bit dehydrated, my skin shows wrinkles.  If I’m pushing water, my skin is smooth.  Under extreme stress, my cheeks get fat.  What I mean by fluids of the face are tears, snot, phlegm, drool, slobber, saliva, lymph, mucus — including both the inconvenient forms like edema (swelling), painful sinuses, or a drippy nose and the proper forms like the film on eyeballs, back-of-the-throat drainage of sinuses, and mouth moisture.  When I googled my list, what I got was Sjogren’s Syndrome.  

Besides a dry mouth and dry eyes, symptoms often included are fatigue and muscle ache.  In fact, this is a systemic disorder that overlaps a lot with other scary stuff like systemic lupus erythematosus (which my mother always insisted I had though I probably didn’t), rheumatoid arthritis or scleroderma.  DNA analysis identifies at least five different risk-related major gene regions.  It appears that there are vulnerabilities that are activated by environmental challenges.  My body is programmed for rain and fairly consistent mild temps — not the wide swings of high prairie.

But systemic vulnerability can be subtle and hard to detect though there are tests for all the fluids: blood, spit and tears.  Progression or damage can be avoided by supplying artificial fluids like eye drops.  Eyes are the most vulnerable because the surface of the cornea needs to be lubricated to keep it from being scratched or eroded.  And they are the most obvious because eyes look at eyes and notice small differences, which is why people love eye makeup so much.

Fatigue is so internal, fought so hard when people want one to do stuff but meet reluctance, and so seemingly causeless, that it is another of those disorders that become a moral issue.  “Get off your lazy fat butt!”  This adds the molecules of emotions.

But who knows about the suspected culprits?  Even docs don’t.  Descriptions below are from Wikipedia and therefore anonymous, uncheckable.  I left all the links in since you might be seriously interested.  Also, I recommend the document I’ve got here for reference:  http://www.uptodate.com/contents/sjogrens-syndrome-beyond-the-basics.  It starts with basics and then gets more complex until it’s for physicians.

Cell adhesion molecules (CAMs) are proteins located on the cell surface^[1] involved in binding with other cells or with the extracellular matrix (ECM) in the process called cell adhesion. In essence, cell adhesion molecules help cells stick to each other and to their surroundings.

These proteins are typically transmembrane receptors and are composed of three domains: an intracellular domain that interacts with the cytoskeleton, a transmembrane domain, and an extracellular domain that interacts either with other CAMs of the same kind (homophilic binding) or with other CAMs or the extracellular matrix (heterophilic binding).

Lymphocyte homing receptors are cell adhesion molecules^[1] which target addressins. Lymphocyte homing refers to adhesion of the circulating lymphocytes in blood to specialized endothelial cells within lymphoid organs, facilitated by diverse tissue-specific adhesion molecules on lymphocytes (homing receptors) and on endothelial cells (vascular addressins).

Addressin also known as mucosal vascular addressin cell adhesion molecule 1 (MAdCAM-1) is a protein that in humans is encoded by the MADCAM1 gene.^[2][3][4]  Addressin is an extracellular protein of the endothelium of venules. Addressins are the ligands to the homing receptors of lymphocytes.^[5] The task of these ligands and their receptors is to determine which tissue the lymphocyte will enter next. They carry carbohydrates in order to be recognized by L-selectin.

Free lymphocytes constantly recirculate in blood after their re-entry from lymphoid tissue, via lymphatic and thoracic ducts. This happens so that the full repertoire of antigenic specificities of lymphocytes is continuously represented throughout the body. Homing happens in tissue-specific manner—e.g. B lymphocytes migrate better to mucosa-associated lymphoid tissue (Peyer's patches), and T lymphocytes preferentially to the peripheral lymph nodes.^[2]

Peyer's patches (or aggregated lymphoid nodules, or occasionally PP for brevity) are organized lymphoid follicles, named after the 17th-century Swiss anatomist Johann Conrad Peyer. They are important part of gut associated lymphoid tissue and usually found in humans in the lowest portion of the small intestine, mainly in the distal jejunum and the ileum, but also could be detected in duodenum.

All this stuff is merely a minute account of how the bazillion molecules of your body interact to make you happen.  Few people will share over coffee that their “Peyer’s patches” are acting up, though they might be and it sounds important enough to have pleased my mother-in-law.  In fact, she was carrying the genes for vulnerability to colon diseases which might very well have involved her Peyer’s Patches.  Most of what our bodies do is controlled by the autonomic nervous system.  (“Auto”=by itself, uncontrolled consciously, and named for that —“nomic.”)  That’s the system that lie detector instruments are using for reference.

I resist docs who want to add more molecules to a systemic mix in hopes of making it do the right thing.  Bodies will often self-regulate if they remain a moving process.  It’s like regaining one’s balance after stumbling.  Pharmaceutic companies don’t like that idea.  

When I watched the film about Brazilian bull riders, I noticed that when mothers sent their children to bed they said,  “Brush your teeth and wash out your eyes.”  We should probably do that.

Here's another video, this time about the body as poetry.
 http://www.fieldworktv.com/2016/11/24/adam-dickinson-anatomic/

ITCHY ACID EYES

When Bob’s second wife’s sister, Helene DeVicq, came to visit, we were always curious to know why she took so long to prepare for the day.  The bathroom was occupied for a full hour before she came out, which was okay in a practical way because we just used the shop lavatory, but what could take so long?  She did a lot of face care — which paid off because she was always model perfect in terms of “maquillage” (that’s French for makeup) — but she also did face and neck exercises and other mysterious things.  Now I have had to add more small morning rituals myself, more little potions on the counter.  More maintenance -- aauugh.

For a year or so I’ve been aggravated by itchy eyes.  I was afraid of infection which nearly destroyed Bob’s eyes in 1961.  His was Herpes Simplex Keratitis and was saved in the nick of time by accidentally finding out about a new experimental drug, meant for cancer treatment.  I decided I was just allergic to smoke, since there was field burning.  Then house dust in winter.  Then. . . but this time the eye doc noticed the little patchy scaly spot on my cheek — which I thought was from my glasses frames rubbing since I wear glasses with big lenses.  

Is that psoriasis?  Well, maybe.  Psoriasis gets into eyes.  And I have rosacea, that was diagnosed by the very strange dematologist I visited years ago.  He was totally hairless, deeply Southern, and his first words to me were  “strip.”  Then he recommended Pond’s cold cream, a lady’s basic substance from the Forties!  I was outta there and never went back.  He left town in a few months more.  But now it turns out that psoriasis and rosacea are more than cosmetic issues.

Innocent at first.

On the Internet I've learned a lot that no doc bothered to tell me.  The main thing is every morning and every night one should use a warm wet compress on eyes for five minutes. (Which feels good on my eyes but I hate the water running up my arms and getting my sleeves wet -- this is a cold house and I wear long sleeves.)  When things are soft, one gently washes the eyelids with a little diluted baby shampoo.  Now I realize that there is a sort of crust, a little like a hard water line, along my eyelashes on the lids.  Since part of this complex is “dry eye syndrome” (which the eye doc now tells me I have) I suspect that it is the dried mineral content of tears, which are supposed to be constantly washing the eyes.

But now I also find out that probably the population of teeny parasites that normally lives along the base of the eyelashes, in the little pockets each lash grows from (eek), builds up and irritates.  The washing technique seems to get them under control.  One web lady, Dr. Cynthia Bailey, is a dermatologist with a cosmetic skew.  She recommends using a Q-tip to rub along that line with diluted baby shampoo.  Eye makeup had begun to trigger what I thought was allergy, so for years I haven’t been very alert to the state of my lids except to smudge on eyeliner if I were going out.  If I don’t do that, I don’t seem to have eyes.

But this doc went farther.  She began to talk about the acid/alkali balance in bodies.  I’ve thought about this quite a bit but not in terms of bodies.  I was reading about gardens and soils. For instance, one can't grow foxgloves here because they need acid soil. 

Acid/alkali refers to the behavior and presence of hydrogen ions on molecules.  Before I could find this out, I realized that — much more than before — Google is dominated by sales, so you must go down the lists past a lot of people trying to sell you things by arguing about the acid/alkali balance of your bodily fluids.  The idea is that your body should be slightly alkaline, but that the modern diet pushes us towards acid with sweets, processed grain and dairy.

“An acid is a substance that donates hydrogen ions. Because of this, when an acid is dissolved in water, the balance between hydrogen ions and hydroxide ions is shifted. Now there are more hydrogen ions than hydroxide ions in the solution. This kind of solution is acidic.

“A base is a substance that accepts hydrogen ions. When a base is dissolved in water, the balance between hydrogen ions and hydroxide ions shifts the opposite way. Because the base "soaks up" hydrogen ions, the result is a solution with more hydroxide ions than hydrogen ions. This kind of solution is alkaline.”

A human body should be around 7.4, just above the middle.  Milk is at 10.  Oven cleaner is 14, the highest end of the scale.  The idea is that animal foods tend to be acid while vegetable foods are alkaline, esp. green stuff.  But, like cholesterol, blood levels of pH are controlled by hormone action —maybe drawing mineral from bones, excreting acids through the kidneys.  All that homeostasis busyness kicking on and off.  

You can test your urine pH with little sticks like the ones you use for garden soil or pregnancy testing, but it will be a little more acid that your actual body fluids — maybe 6 something. Testing pee is a little ickier than testing blood, but not so ouchy.  There’s also a saliva test, which is closer to blood pH.  6.5 to 7 would be normal.

Irish peat bog

The British islands, Ireland more than Scotland, are acid because of the geological shape they are: dished slightly so that the constant ocean moisture collects to make peat.  Thus, genetically Irish bodies tend to be a little bit acid and this shows in their faces, sometimes quite red, and tending towards rosacea.  The rosy cheeks that I always attributed to chill and fine rain may actually be due to higher acid.  But some of the molecules in the body fluids work better if they’re a little bit alkaline.  People selling health gimmicks use this to persuade people to use various diets and substances, exaggerating a bit of truth into dogma.  As usual.  But the following seems to fit me.

“Symptoms of Over-Acidity:

Constant fatigue

Easily running out of breath

Frequent sighing

Muscle pain or cramping after walking 

Often feeling like you can’t get enough air

"When people are very acidic, their tissue levels of oxygen are so low that they have difficulty holding their breath for more than 20 seconds. The length of time you can hold your breath is one technique you can use to document the difference that occurs after adapting a more alkaline-producing diet.”

Oximeter

When my blood oxygen is tested with one of those little fingertip grippers, it comes out low.  I asked about that, but no one had answers. I reported all the above symptoms, but they were not considered relevant.

Valier is a highly alkaline place because it is an old sea bed.  The latest well we drilled leaves a white crust on spigots.  “Calcium forms when the surrounding environment is alkaline. This results in symptoms of migrating nerve and joint pain. Insomnia can also be a problem, and it is often associated with early morning stiffness. These individuals wake up stiff, but the stiffness quickly improves as muscle activity produces lactic acid. Lactic acid helps neutralize the buildup of alkaline compounds and bring the body's pH back into balance.”

When I get up, I should right away walk around the block or do exercises.  I don’t.  But coffee is acid, right?  The quotes above are from:  http://www.drdavidwilliams.com/proper-ph-balance/  His gimmick is green juices.  I do not want another kitchen machine.  But I see the stores are beginning to stock green juice in bottles.  Maybe that would be worth a week of experiment.

My brother Paul was a red-head like me, but redder.  His sweat was so acid that it ate wristwatches unless it had a leather strap and he had to put adhesive tape over the main body to protect the battery.  He could patine bronzes just by rubbing them.  (He was an art metalsmith.)  I suspect that our genome and epigenomes were a bit skewed by high acid.  The other brother Mark is less ruddy and more stable, but slightly depressed and possibly alcoholic.  I think this is part of the heritage of acid Ireland, which could be said to even have a dark and acid national personality.

The bottom line is that my eyes, kept free of mineral rime, no longer itch.  And maybe I’ll take another run at growing greens this summer.  But now it takes me more time to get going in the morning, even without a walk.  I had to write a list of all the little rituals to post on the mirror so I'd remember everything.

Mary, Mark and Paul

Sometime in the Fifties

The trail above Multonomah Falls 

SCARY ON BOTH ENDS

One of my more popular “travel” sermons that I used for pulpit supply (when a person is asked to speak on a Sunday because the usual minister is away) was called “Everybody Poops.”  I don’t know when we all started using the word “poop” instead of the more vulgar “shit” or the more Latinate “defecate,” but even the scientists now talk about “poop.”  I suppose it has something to do with onomatopoiea.  Little kids loved it. 

Anyway, the point of the sermon was to discard the processed and unnecessary on grounds that a) it can get toxic to hoard, b) you will have no space for new stuff, and c) it’s withholding from participation in the processing world, a sign of lack of trust.  Part of the reason I was thinking about it at all was that during my hospital chaplaincy, when I expected to be having serious discussions about God and the afterlife, all the patients (esp. the older ones) could think about was moving their bowels.  Could they?  Would they?
  

Also, in that setting I learned what happens if a person does NOT ever move their bowels.  All that stuff gets stuck in the intestines.  Maybe past help from an enema.  Hospitals have sets of “spoons” in various sizes designed to pull out stuck feces.  The most extreme case might require surgery to remove what amounts to internal coprolites, the fossilized feces that prove that even dinosaurs pooped.  Or sometimes, when intestines are blocked, a flexible tube is snaked down the nose to the stomach in a reverse of forced feeding, so as to suck out the backed up substances.  Of course, that only works if they’re still liquid.  In fact, one of the secrets to keeping peristalsis moving along is to drink plenty of water.  The nutrition in food is liquified and oozes through the wall of the guts into the circulation system, both lymph and blood.  If THAT process gets stuck or reversed, the result is diarrhea.

The alimentary system, from mouth to anus, is essentially a long permeable tube that lets us take the world into us and, if things are going well, return what we don’t need for the use of other creatures, animal or vegetable -- usually the latter.  If the world cannot be ingested, we will die.  If the world cannot be excreted (feces is only one way -- breath, sweating, metabolism are others), we will die.  We are a pass-through, not a destination.  

But here comes the swerve.  Some time ago a dermatologist looked at my pink cheeks and told me I had rosecea.  When I googled at that time, the posts said no one knew the cause, but a year ago in August an article by Ed Yong blew the whistle.

New Scientist published a story stating that rosacea – a common skin disease characterized by red blotches on one’s face – may be “caused” (more on this later) by “tiny bugs closely related to spiders living in the pores of your face.” Tiny bugs that “crawl about your face in the dark”, lay eggs in your pores, and release a burst of faeces when they die.

Mites are relatives of ticks, spiders, scorpions and other arachnids. Over 48,000 species have been described. Around 65 of them belong to the genus Demodex, and two of those live on your face. There’s D.folliculorum, the round-bottomed, bigger one and there’s D.brevis, the pointy-bottomed, smaller one. These two species are evolution’s special gift to you. They live on humans and humans alone. 

They don’t poo! The mite has no anus, and stores its waste in large cells within its gut. Nutting saw these as adaptations for a life spent head-down in a tightly closed space. When the mite dies, its body disintegrates and the waste is released. 

People with rosacea should look away now

For the most part, it seems that they eat, crawl and mate on your face without harmful effects. They could help us by eating bacteria or other microbes in the follicles, although there’s little evidence for this. Their eggs, clawed legs, spiny mouthparts, and salivary enzymes could all provoke an immune response, but this generally doesn’t seem to happen.

But like many of our body’s microscopic residents, Demodex appears to be an opportunist, whose populations bloom to detrimental numbers when our defenses are down. Several studies, for example, have found that they’re more common in people with HIV, children with leukemia, or patients on immunosuppressive drugs. Perhaps changes to the environment of the skin also allow the mites to proliferate beyond their usual levels.

In dogs, an overabundance of D.canis can trigger a potentially lethal condition called demodectic mange. In humans, these blooms have been linked to skin diseases like acne, rosacea and blepharitis (eyelid inflammation). The New Scientist piece will undoubtedly bring this to many people’s attention, but scientists have been talking about such connections for decades. The rosacea link was first put forward in 1925!

Dermatologists have since repeatedly found that Demodex is more common in the cheeks of people with rosacea.  According to an analysis of 48 separate studies, , people with rosacea are eight times more likely to have a Demodex infestation. Obviously, correlation not causation, blah blah blah, you know the drill.

Kevin Kavanagh suggests that rosacea may be caused not by the mites themselves, but by the bacteria in their faeces. After all, antibiotics that kill the bacteria, but are harmless to the mites, can sometimes successfully treat rosacea. 

The subject of feces is repulsive to many.  The subject of little mites that live on your face and never poop until they die in an explosion of icky excrement is a proper one for Halloween.  I guess the mask would feature a red face with crawly things on it.  I don’t expect anyone dressed as a turd to knock on my door, but you never know.  This is a small conservative town with its roots in a Belgian farming community only a hundred years ago and they are preoccupied with cleanliness, neatness, and control.  They have not forgotten the lesson of the plague that killed a third of the population of Europe.   Strips of stubble are their neatly regimented version of what is discarded to be decomposed.  We wrestle with the problem of our sewage lagoon.  (The muskrats solved one problem by chewing through the electrical wire of the pump and electrocuting themselves.)  All day Corky and I have been reworking my kitchen sink drain and my waste stack valve.  You can't just ignore this stuff.

Halloween is a retention ceremony: the retention of memory of the dead, the retention of skeletons, the retention of the last of the growing season.  Only the root vegetables survive underground now.  The original jack o’lantern was a turnip rather than a pumpkin.  But a pumpkin can survive for a while after frost unless it is carved, which opens the way to rot.

If I use poop as a metaphor for memories that ought to be discarded, it won’t be very useful because we mostly value memory -- at least our own.  The memories of others might not be very welcome, particularly the mass graves of people we have excluded, excreted, considered diseased and unwelcome.  (A few nights ago I watched “A Secret,” a French film about a family denying its Jewishness.   The film includes brutal and obscene footage of the naked skeletal bodies found dead at the newly liberated concentration camps, pushed into mass graves by bulldozers in a danse macabre of arms and legs flung tumbling.)  Too horrible to bear.  But we must.  The plot hinges on a silly little pup toy in a sweater.

What frightens us becomes trivialized, little clawed bits hidden in our flinching flaking skin.  Masks.  Playfully screaming children.  Fires contained in vegetables.  Saying poop instead of shit.  The temperate-zone world of the northern hemisphere is now entering a time of starvation and death for many people.  But first a night of mockery and abandon.  Laugh now.  Weep later.  If you are lucky enough to have an anus, take care of it.