Sick

For a long time, I've been age inappropriately conscientious of optimizing my health.  Who reads Prevention Magazine when they are twelve?  (Me.)  In middle school, I became a vegetarian, I guess mostly because animals are cuddly, but honestly, I was also very pleased to know that I was significantly reducing my risk of heart disease.  I'm not, and wasn't then, the candy bars and soy burgers sort, either.  Oh, no, baby, I maximize my nutrient density.  Don't even make me talk to you about antioxidants and B vitamins.   When I worked at a greenhouse as a teenager, I refused to apply the pesticides lest I increase my cancer risk.  In college I toted hot herbal tea in a glass jar which usually managed to leak all over something.  No tumblers for me: plastics offgas, especially into hot liquids, and I was concerned about those compound's influence on my long term reproductive health.

All of this does make a little bit of sense when you consider my mother is ill with a chronic immunodeficiency disorder which varies widely in how well it responds to conventional medicine.   Excersizing regularly and eating well are central strategies for managing her health.

I just found out that a dearly beloved friend has terminal cancer, albeit in remission.  This is the woman who taught me to cook.   She is a macrobiotic chef, the most conscientious eater I know.  No one in existence is kinder to their colon than she has been; where does it get off turning on her now?   Another friend, a marathon runner for god's sake, is living with not dying of the same disease.  What the hell is going on, universe?  People who take exemplary care of their bodies are not supposed to get sick like this.  Why else did I spill so much milkthistle tea all over my goddamn books?

I saw the movie Rent a few weeks back and was struck by the line, "living with living with not dying of AIDS"  (Notice how I alluded to it up there.  No, not plagiarized.)   Living with not dying: reminded me at the time of my mom.   True, there are times when she can't get out of bed, when she runs a fever of 105, when she is rushed to the hospital for emergency surgery, but most times, she is fine; full of energy and ability.   A stranger wouldn't know that she is sick.  She looks so healthy on her good days that associates resent her nonnegotiable need to cancel superfluous commitments when she has a bad one. 

Turns out I know quite a few people who are living with not dying.  Catastrophic diseases assail our beloveds, without sense, without reason or cause.   It is fucking unfair, and I am enraged almost beyond obscenities.

Even more nonsensically,  these folks get up again to stand blinking in what might be the eye of the storm or it's departure, who knows, and find themselves, of all things, living; maybe with renewed appreciation or wisdom or some other crap, I don't know.  From where I sit, though, it doesn't seem like being sick changes a whole lot one way or the other.  I like this better than imagining disease as a penance or a purifying spiritual journey. 

Living with not dying: it's a possibility, but not an unmanageable one. There is hell to pay, to be sure; I'm not claiming to know from physical pain first hand.   But c'mon, we've all read Buddhist texts during one existential crisis or another: life is suffering, is it not?  Our hearts break of loneliness or rejection or betrayal, our grasp on widely experienced reality crumbles under inexplicable weight, and our bodies fail us in malicious untimely ways.   We are neither damned nor made sacred.  The fates shit on us and we handle it the best we can, which, wouldn't you know it, is the perfect way for us, and all the while, there life is, spectacular and ordinary and profound.   Snow falls beautifully, siblings fight, the light hits the water just so, dinner burns.  God is in the details.   This moment, the only thing we ever own, opens and lasts.  We live with not dying.

My mother's illness, Rheumatoid Arthritis, is hereditary.  Her diagnoses came when she was 24, the same age I am now.  For a few months I've been having mysterious pains in the fingers and wrist of my right hand.  RA can begin this way, aching in the joints of your digits, a weakened ability to make the twisting motion required to open a jar.   I am not fatigued the way she was during that first undiagnosed year, though.  Maybe I have just been typing too much in a bad chair, or riding my bike too long.  Not that it matters.  Being without health insurance means I can neither confirm nor deny  such suspicions.   Splurging out of my own pocket for an appointment won’t even help because if a doctor does find anything, besides not being able to afford treatment, I will then have a preexisting condition on the chance I ever do get insured.   As if a chronic degenerative disorder wasn't occasion enough for warm friendly conversations with one's health management professionals.

I've always assumed I would inherit my mother's disease.  This is slightly irrational, because though I have a greater chance of developing RA than does the general population, the numbers still sound a strong probably not. 

Varying amounts of fear rise to meet the thought of my presumed fate.  Influenza or even a bad head cold can reduce me to incoherent sobs:   I hate body aches I hate them I cannot handle this I cannot handle a lifetime of dull throbbing pain everywhere and constant exhaustion and side effects and the loss of mobility and wheelchairs and hospitals and surgery.  Other times, like now, getting sick is just a card I might be dealt: bad, but inevitable.  There are others in my hand.   I'll live.

Comments

[Erin]

I am so sorry to hear your mom and friend are ill. I have a family member who sufferes from RA as well and it is such a devestating disease. My heart goes out to you, and I hope you get insurance soon so that you can be tested. Treatments, as you know, can be effective if used early enough.

You'll be in my thoughts.

['mouse]

A beautiful essay.

But for me it brings up the old question -- if life is suffering then it's also pleasure, no? And is the net result any different/better for a person who drinks bitter tea and eats relatively dull soy products than for one who derives daily bliss from a morning cup of coffee and who finds a rare ribeye a nearly transcendental way to connect to the universal element that is cowness?

Tho I draw my own personal line this side of nicotine I understand people who choose differently (and who are reasonably considerate of other's airspace); I'm not sure I'd want to live longer/healthier in a world without fermented agave juice and lime.

And thus we live on, on this unlikely spinning ball in these strange days. Tolerant, caring and trying our best to avoid illness and to help or spread pleasure to those who are suffering.

['mouse]

Funny, right after reading your post and writing my response, I popped over to my favorite zen site and found this, which even refers to my beloved cows: http://whiskeyriver.blogspot.com/2005/12/in-may-i-gave-day-long-benefit-writing.html

[Eric]

Haelliou, I'm a lurker from orionoirland.

Dont get sick.

I understand that minocycline, an antibacterial, is now approved for RA by the Am. College of Rheumatologists. Antibacterials incl minocycline were first applied to RA decades ago by one Dr Thomas MacPherson Brown. The Am. College probably maintains (rather than suggests) that minocycline acts as an anti-inflammatory in RA. This is possible. Brown, however, suggested RA is caused by bacteria. There are other etiologists who think that is in fact probable. No hard evidence indicates that the inflammation of RA is autoimmune. No clear proof of a bacterial etiology has ever emerged either, despite extensive effort. The study (and eradication) of bacteria is not always as easy and straightforward as one might think. Read about Whipples disease for example.

I know of some RA patients who whapped their disease back to hell with antibacterials. Others did not do so well. Every degree of improvement, from cure to no response whatsoever, is represented in the very large body of anecdotal information I have taken in regarding the antimicrobial treatment of chronic inflammatory diseases of unestablished cause. People with newer illness generally do somewhat better.

Early 20s is a common age to come down with mysterious chronic inflammatory diseases. I am 25 and acquired severe Chronic Fatigue Syndrome a few years ago. I was house-ridden for months and was on a psych ward for a couple days due to extreme neurological symptoms. Basically it was like the flu + big league anxiety. I am 90% well (on no palliate medications) after 14 months of heavy combinations of antibacterials (and still treating).

These bacterial etiologies are, sociologically, subordinate at present. Therefore you might want some sort of pedegree for them other than an assertion from a stranger that they are probably either correct or mostly correct. There are some good technical papers, but first of all check out what the Nobel committee mentioned about Crohns disease and RA, in their statement upon issuing the big prize to Warren and Marshall for discovering that Helicobacter pylori infection causes most gastric ulcers (and for fighting for the idea against an entrenched establishment for 15 years). Certainly the Nobel committee didnt assert bacterial etiologies for Crohns and RA, but did encourage their investigation.

Search at pubmed.com and you will find a few clinical trials on minocycline for RA, including one on early RA. However, mino alone is weak as an antibacterial treatment for chronic inflammatory diseases. I dont think there are any published works on stronger antibacterial treatments for RA.

Finally, I think it likely that inflammation / immune activation in the brain is the cause of most psychiatric diagnoses. I could cite a few studies later, but I have an exam right now.

There are alot of patient communities online using antimicrobial treatment for various mystery chronic inflammatory diseases. Well worth checking out, tho much of what is exchanged is not quite scientifically tight in my opinion. Roadback is an RA site, tho I havent spent much time there and am unsure whether most patients there us treatment as strong as those I consider optimal.

Perhaps I can say more later.

Its true that having a parent with RA is statistically by no means an "RA sentence." So perhaps you are not developing RA. But if you are, I recommend kicking its ass, and carefully considering means that are not currently standard care.

Obviously one would realistically expect some degree of groupthink, vested interest, closed-mindedness, etc to exist in the biomedical establishment. But, its actually somewhat worse than many people think (just read any news article about Helicobacter pylori).

[Pearl]

The mind-body is remarkably complex.I can relate to that path. I went vegetarian as a child, eschewed plastics, have parents with a slew of autoimmune type diseases (arthritis, diverticulosis, skin cancer) and heart disease among other things. I'm at the age my dad was when he got his first heart attack. It's hard not to scan around for falling sky bits. It's something of a benefit to feel your life is lived on borrowed times. The conscientiousness it breeds is a stressor itself that can precipitate diseases. It's all very complex and as we see, smoke like a chimney, drink like a fish, sleep when you can and be garrulous and live to a healthy 80. Work hard, play, keep balance physically and spiritually and life still may have otehr plans for longevity due to random chance or confluence of factors. It's almost enough to make one a pure hedonist. Do what you can and choose to let the rest go. It's the best health plan I've come up with yet. Takes a rigorous discipline to keep going tho. The pain and pleasure are both attractive in life.

[e]

merc, where are you? HOW are you? we all moved over to the new clubhouse. come home, all is forgiven! forgotten! forgone! forsworn!

[Juliabohemian]

I don't know what to tell you. It's such a sad way to live and yet, it teaches us so much.
I have been 28 and have had health problems since I was about 19. I have fibromyalgia. Often I feel fine. Some days I can't get out of bed. And I definitely find myself having to reduce my commitments in favor of naps.
But I also believe that God uses these limitations to teach us about ourselves and to help us appreciate the world around us.
I am living. It might be in pain, but it is still living. There is much I can do and still much that I can experience. And I still have the power to affect the world.

[mcb]

*nodnod* to what Pearl said.

So 'Fern, are you taking a winter break? Miss seeing you here...

[Glenn Fieber]

Hi,

I was moved by your letter. I am 3 times your age and in excellent health--the vagaries of fortune. But I watched a friend die horribly of RA. During her 6 years of suffering, I looked for answers, and part of my search led me to read MacPherson Brown experience in treating RA with tetracyclene.

If you haven't read this book, I highly recommend it to you: I think it offers hope, and is an insight into the machinery of money that modern medicine has become with its interest groups and billion dollar pricetags.

Best wishes,

Glenn

[McBeth]

Hey grrlie, where'd your most recent post go? The 'I went dancing' post?

Whatcha doin' over there?

I got you in my brain and I do check in here on you. Ahem. : )

[e]

mee, tooo, i was gonna say the same thing: whaa? although i suppose i would have said "more recent post" as it WAS January or so, was it not? are we going backwards here?

[McBeth]

*wavewavewave*

no pushing and shoving now, just an orderly and polite hiyall coupled with a triple toe-loop thingie and finished off with the grand finale 'thinkin' boutcha'. : )

[Jenn]

Ditto what McBeth said, half a year later. 'sup?