Impervious, Part 2

Lying in bed this morning long before dawn, reflecting on what to write about my piece of art "It was all in my head but it's not anymore" I was struck by the power of my reaction.  I decided it was time for a second installment of Impervious.

I'm going to thoroughly rant so be forewarned.  I'm going to do an old testament "Job lays out his complaints" thing here for a while. 

I've been in pain for as long as I can remember.

In my 20's after graduating from college, my birthday tradition became doctor visits.  I remember when I first saw the pattern after I had spent several birthdays in a row in various offices- urgent care, gynecologist, internal medicine- and I remember thinking something down the lines of, "Next year in Jerusalem," hoping for redemption.

My symptoms were many and varied and mostly subjective- head aches, itching, nausea, back pain, abdominal pain, aching feet, runny nose, sinus pain, menstrual pain, bladder infections, tingling pain radiating down my arms, extreme weight losses and gains, mood swings, panic, and anxiety.  No broken bone to x-ray or bloody gash to stitch, they had to take my word for it, on faith.

I remember a nurse practitioner to whom I'd just explained the horrible menstrual pains and mood swings I'd experienced since starting The Pill.  I'd changed types several times over repeated visits to no avail.  As we wrapped up, she absent-mindedly offered me yet another prescription saying, "We could get rid of that facial hair with birth control pills."  I declined.  "Oh, yeah, that's right.  You don't respond well."  I left feeling flawed and so strange, so off the charts, that I couldn't be remembered even when I was standing right there.  Uncomprehendable.  Forgotten.  And miffed.

I experienced persistent pubic area itching and the doctor who examined me couldn't find anything so he prescribed a steroid.  I went to the pharmacy to fill it and unsolicited, the pharmacist said, "You do know that steroids are hormones and can thin the skin with prolonged use.  They simply mask the itching."  I walked away without filling my prescription, thankful and angry.  Thankful that I'd avoided more hormones.  Angry that he would offer me such consequences as a solution for a problem he couldn't even find!

The internal medicine guy, I only remember going because it was all so inexplicable and my father-in-law, an orthopedic surgeon, thought that internal medicine guys were good at puzzling out odd cases.  Lots of tests which all came back indicating that I was in great health.  Nothing wrong with me.  Gotta say that living in pain while being told there is nothing wrong is totally crazy-making.

I went to the podiatrist because my feet ached so badly.  He removed my large callouses.  This had no impact on the pain and re-grew quickly.  I'd wager that the invasive wart above that regrown callous was introduced into my compromised skin following that procedure.  But at least he was polite and as helpful as he could be.


I went to allergists, a really out-there group for the mid-90's.  They told me that I was reacting to wheat, dairy, beef, artificial colors, preservatives, molds, yeasts, and some pollens and should follow a Candida diet avoiding sugars.  I find myself wanting to be charitable.  "At least they took me seriously and found something and had a way for me to respond.  Doctor didn't want to talk more than 2 minutes but at least he had a book for sale in the bookstore.  Turned my life upside down, sure.  The diet helped but never eliminated my pain.  And I lost weight so fast that I gave myself gall stones.  But hey, at least they tried." 

The medical people couldn't find anything.  I self-medicated.  I took Advil and aspirin every day, working up to 10+ each/day.  I was doubled-over, grasping my searing guts when I decided to try a different path. I decided that maybe the pain was trying to communicate with me so I'd listen.  I gave up all aspirin and Advil for over a decade and began chiropractic.

As part of my early chiropractic experience, I did a functional thyroid test for body temp and pulse rate.  When my pulse and temp were low, I was considered to have a low functioning thyroid.  Not enough outside of the normal range to register on a blood test but functionally not high enough for my particular body. When I next filled out insurance paperwork, I reported honestly and in good faith that I had thyroid problems.  They denied me coverage.  Next place accepted me but at more than double the rates.  Took me more than ten years to get that off my record.  I was furious!  They couldn't find it, much less diagnose or actually treat it, but they have the gall, the unmitigated gall, to penalize me for it!  @#$^*%@!  Now I only report to traditional medical people what other traditional medical people find and not all the alternative stuff I know.  My good faith was betrayed.

Let's talk for a moment about being fat.  Being fat seems to void the warranty as far as medical people are concerned.  Every problem, every pain that a fat person has must be because they are fat and the solution to being fat is simple- lose weight.  If the fat person doesn't lose weight, well, then, there's absolutely no reason to look any farther and nothing anyone else can do.  Unexplained foot pain- fat.  Menstrual problems- fat.  Immune problems- fat.  Back pain- fat.  Oh, and my favorite- morbidly obese which was my actual diagnosis on the form so I could get a visit to a nutritionist covered by insurance.  To get the help I asked for, I had to accept their label of 'deathly fat.'

Lots of labels when I asked for help- fibromyalgia, chronic pain, chronic fatigue syndrome, pre-menstrual syndrome, chemically sensitive, morbidly obese- and not one of them kind or even helpful.  I can't remember a medical person in my 20's or 30's ever complementing my body.  I go in desperate, in mysterious constant pain, and I don't get one kind word much less a helpful one.  No kindness.  No help. 


Then there was the neurologist.  This was the coup de grace.  My arms were tingling with this electric, nerve pain.  I really, really didn't want to go to one more medical person.  Really.  Had avoided them for years by this point.  But my wise friend Sheila said, "There are some things too precious to risk." So I went.  I described my mother's narrowed vertebrae, my sister's scoliosis, and both of their extra ribs in their necks along with my symptoms and concerns about my own nerve-neck-arm pain.  I did all the evaluation tasks and went for an MRI.  The MRI made me feel panicky and it wasn't the closed space.  Something's not right about aligning all the water molecules in one's body in the same direction.  Unnatural.  And I'm guessing, not nearly as benign a process as they'd like me to believe.  Yeah, I do hear my strident tone there.  Yeah, I'm a little paranoid.  What medical people assure me will "do no harm" and "have no side-effects" doesn't correspond at all to my own experience.  I've lost faith.

But this wasn't the worst of it.  I asked for a copy of my chart, all the neurologist's notes, to take back to my chiropractor.  I read it.  He was scathing.  In clinical terms, he shredded my credibility.  Hypochondriac, hysterical, and psychosomatic.  Assuming my mother's and sister's condition's to be my own.  Perfectly fine.  No neurological problems he could see although given that I moved despite being given instructions to hold still during the MRI, he couldn't say definitively.  'Paranoid, uncooperative bitch' would be my paraphrase.

My head is tingling and my blood's up as I write this.  Lot of energy behind this stuff.  Lots of momentum.  I went vulnerable, trusting to their kind help and found none.  But even more so because I wondered, too, whether I was crazy.  Losing touch with reality.  Paranoid.  Psychosomatic.  Hysterical.  A hypochondriac.  Yeah, I wondered if all the pain was in my imagination.  I knew my body was totally screwed up, flawed beyond repair.  Nobody else's body seemed to respond this oddly.  All the experts said all the tests were normal.  Couldn't find anything.  Nothing wrong.  Must be imagining it.  Must be my fault.

I quit job after job, sick.  No one else was getting sick in those buildings.  Just me.  I freaked out in the hospital when both my children were born.  Heck, I was panicking in the doctor's office for prenatal exams.  They were going to hurt my baby doing something which 'has no side effects.'  How can you trust people who routinely perform tests which kill a small percentage of their patients?  Everyone gushed about how great this ob-gyn was.  I was a wreck.  I dreaded every visit.  What kind of a freak was I?

No kindness.  No help.

Angry, bitter, silent, absent.  Scared, embarrassed, hurt.  Humiliated, inexplicable.  Impervious.

What galled me was that I needed them anyway.  After 38 hours of labor, I needed their help to birth Anjali and two hours of reconstructive surgery afterwards.  I needed help birthing Mark, too, and with his horrible case of eczema.  They absolutely freaked me out and I needed their help anyway, tainted and limited as it was.

Gramma Kathy was a Sunday School teacher in the nursery at our old church.  She is a nurse practitioner, women's specialist.  I liked her and decided to go for an appointment since I was hoping to have another child and would need to deal with someone.  I had purposed going in that we would talk only- no procedures.  She briskly carried on her normal routine and before I could gather my wits, I was frozen and having a pelvic exam, pap smear, the whole nine.  Left feeling violated and frightened.  She called with the results- I had HPV, a venereal disease which could cause cancer.  The test for it has only been available since 2003 so when I had gone in before, no one was even looking for it.  Long process later, the good news is that as of spring 2011, I tested normal- no more pre-cancerous cells.  And as long as I take my natural antiviral capsule every night, I'm symptom-free- no more itching, discharge, menstrual pain, or any other sign of infection.  I hung my letter reporting normal results up for months like a blue ribbon, I'm so proud.

There was something wrong and my body wouldn't relent but kept telling me so despite all the experts to the contrary.  I dogged it and dogged it and now I feel good.  I'm really proud of myself.

Which brings us to the teeth saga.  I promise not to rehash the entire thing.  I've blogged about it extensively from October 2010-April 2011.  Here's what I want to say- I knew something was wrong and the experts kept assuring me there wasn't.

I repeatedly had dreams about my molars falling out.  Very disturbing.  Different molars.  Chunks falling out.  Pieces missing.  Emergency dentists' visits.  Very unnerving.  So I mentioned it to my dentist who poo-poos me, assuring me in an exasperated tone, "Your teeth aren't going to fall out." 

I went in in 2008 with an infection up there and the dentist's assistant x-rayed it and told me they couldn't see anything on the x-ray.  It was fine.  Maybe TMJ so I got fitted for an appliance to keep my teeth from grinding.  Paid hughly for it, wore it once, hated it, and returned it, getting half my money back.  Which incidentally means that I was still out hundreds for a wrong guess.  Ginger worked on the sore spot and it went away.

Until fall 2010 when the infection came back with a vengeance.  Went in.  Nothing on x-rays.  But then the assistant saw the huge swollen bump on the side of my jaw.  "Oh, that is an infection!"  Antibiotics were ordered and taken.  Several rounds.  More than I had taken in the previous decade combined.  No joy.  Tooth 14 is re-root canalled for more pain and more money.  Fifth root found which had been sitting infected for 11+ years since this dentist's office had done it the first time.  Root canal doesn't solve it so then for more pain and more money, it's pulled out.  Two months later after more pain and more money, Tooth 15 is pulled.  More antibiotics, pain, and money with no diagnosis in sight and I go to the oral surgeon.  Who, you guessed it, finds nothing on the even fancier x-rays, prescribes more antibiotics for more money, and assures me it's all going to be ok.  Yeah, right.  I have no confidence but I need their help anyway.  More pain leads to a CT scan.

If my life had a sound track, this is where the score would signal a profoundly unexpected happening.

There, in black and white, was the huge cyst.  The mother load.  The breeding ground.  So big and obvious, I could see it myself before the doctor got to the room.  Holy smokes!  It was the Metrodome expanding up into my sinus like a balloon over the hole where my teeth had been.  Yuck!  And no wonder I had headaches and sinus problems and chronic infections and felt like my throat was constricting with that bastion of nastiness pouring pus down my throat, inches away from my eyes and brain.  Yikes.

When the oral surgeon went through the tooth hole and cut the cyst out, he said that he could see straight through from my mouth into my sinus because the mucus membrane had a large hole in it.  I'm supposing that this might have played a role in my allergies and post-nasal drip since all the contaminants which are normally filtered out by the mucus membranes would have been passing straight into my body.  I'm pretty confident in my hypothesis since I haven't had post-nasal drip or significant seasonal allergies since the surgery.  Yep.  Seriously.  And I'd wager that this also explains the panic and pain I felt when flying since under changing pressure the pus sack would have expanded and contracted erratically.  Oh, and did I mention that I don't snore anymore either?

Even before they removed it, I knew I was going to commemorate this find.  We actually discovered a cause.  I was not crazy.  My teeth did "fall" out.  There was a huge problem.  And my body was so clever and persistent it kept trying to get through to my consciousness even when all the experts and x-rays said otherwise. I let them poo-poo me, I let myself be "assured" against my better judgment, and I seriously doubted myself.  But I didn't give up on myself and in the end I had the photo to prove to myself that I wasn't crazy.  "Nee-ner, nee-ner, nee-ner," I want to say to all those who dismissed and disdained.  "I do so have a real illness."

It was all in my head but it's not anymore.  The delicious irony of them being right but oh, so wrong all at once tickles my funny bone. 

Now, please don't think I'm not grateful for all the help.  I am deeply grateful.  Had I been born in another time and place, I would have died from this.  The fact I didn't is a miracle.  Women in many countries today would never get well.  I am grateful and I have given all the money which came back after insurance paid to Medical Teams International for their work with women's dental clinics in honor of those standing ready to do me good.

Also, please don't think that I'm angry because the doctors and dentists and surgeons didn't know how to help.  I hope I'm adult enough, with enough awareness of my own limitations, not to hold their lack of knowledge against them.  How could I reasonably expect a doctor to diagnosis a disease that hasn't been discovered yet?  From what I hear from my dentist, who's been in practice for 30 years, this is a once-in-a-career kind of thing.  Oral surgeon said it was beyond his scope of practice, too.  My situation was an odd one.  One off.  One in a million.

What I do hold against them is their disdain, their arrogance, and their complete disregard for the consequences I suffered while they treated me for things they couldn't find.  Steroids with side effects which would only mask the symptoms of a problem which they couldn't identify.  Birth control pills they recommended after I recited my previous issues.  The mocking cruelty in my chart from the person I appealed to for help.  Dismissing my pain because they couldn't find the source.  Rolling their eyes.  Assuring me everything was fine when I said it wasn't.  Telling me I couldn't feel the stitches because there was no way the epidural had worn off and then acting shocked when I moved myself onto the gurney because it had.  Not believing me when I explained my idiosyncratic response to pain medication.

They assaulted my dignity and my sanity.  They did harm and withheld kindness and for that I do hold them accountable.
 
I will never have the confidence in medical people that I used to.  And I will always be surprised by their kindness.

Dr. Z never gave up on me through the whole tooth mess.  He redid my pain medication every 10 minutes, every time I said it hurt.  He gave me enough Novocaine it should have numbed my whole head.  He took extra time for no extra pay to cut my tooth into pieces so it would pull out easier because I dreaded the creaking and groaning of having it pulled out whole.  He hugged me and observed I'd had a bad night.  He listened to my fears about losing part of my body and talked me through it.  He coached me on how to say, "No latex today, please" instead of my longer, more grating attempts.  He called me at home on his day off to check in with me.  And Karen, his after hours person, well, she was fabulous, returning my calls, dogging paperwork, and never groaning when I'd call again.  Full points for kindness here.

And Dr. Jenny's office was a miracle of kindness.  Sue, the receptionist, was an absolute gem.  Jane, the CT tech, a doll.  I told Dr. Jenny and Nurse Jenny about the abuse in my past and the smothering and how things could get touchy.  They were leaning over my face, inches away.  They paused.  Compassion filled their eyes.  I saw it.  Then we took a deep breath and continued.  The scrub nurses were so gentle when I freaked out at the anesthesia.  I warned them I might freak and I did.  Very embarrassing.  I told them that I wouldn't be there if I didn't trust them but my body remembered the abuse and unconsciousness.  But this one nurse crooned endearments to me, calling me Sweetie and Dear until I lost consciousness.  It really wasn't as bad as I thought it might be coming out.  No bodily fluids running down my face, nothing like that.  Months later when I called saying I had pain and post-nasal drip, they didn't make me jump through a million hoops.  They believed me about my body.  They sent the CT scan order to insurance and told me to go ASAP.  Turned out I had a cold and no cyst.  Their kindness has changed me. 

******

Well, I've been sitting with this for 48 hours.  I stalled out after the paragraph above and have been waiting to see how it's going to conclude.  I haven't gotten to that satisfying, ah-hah place yet.

I've started two different paragraphs to no avail.  I'll wait some more.  It'll come.

*******

Another day has passed and I've got it.  Today during church, we prayed the Lord's Prayer and that part about being forgiven as we forgive really hit me.  If I want to be free, I've got to release others.  Then, as the pastor was talking about prayer and Biblical standards, the phrase, "Pray for your enemies" hit me.  That's it.

I'm going to pray for my enemies- in this case, the unkind, unhelpful medical people- every day from now until Christmas.

I am going to release them so I can be free.