To Be, or Not To Be? - Choices

I first came to Med Help when my intestines turned on me along with doctors of medicine.  When the doctors fail us, we turn to the internet.  Over the years I've been asked many times how I deal with incurable chronic illness and pain.  There's no secret.  You either deal with it or you die.  It's that simple.  Here's the abbreviated version of my story for anyone with patience enough to read it.  :-)

Like so many people with GI troubles, I presented to "Dr. A-" with extreme bloating and pain after eating.  It got worse and worse until those symptoms were present all the time, even without goading my guts with a meal.  After that sadistic misogynist of a gastro doc performed a colonoscopy with next to zero anesthesia and no further testing, I was told I had diverticulosis, given a pat on head, and told that fiber would cure all my ills.  I gave it the old college try, and only got worse.  Back to the gastro doc.  He told me it was all in my head and there was nothing further he could do.  Have I mentioned he's a sadistic misogynist?  

My good personal friend and horse trainer, "Ms. Doolittle", happens to work at a local hospital as a histologist.  She's the person who gets all the nasty tissues extracted from our bodies during surgery that need to be looked at under a microscope.  Ever wonder where all those gallbladders, appendixes and tumors go?  Ms. Doolittle slices and dices those samples and prepares the slides for review by the pathologist.  Pretty interesting job she's got.  After my botched butt scope, poor Ms. Doolittle got a self-pitying, frustrated, whining earful from me about doctors and the medical community in general and she gave me the name of a gastro doc in her hospital.  Apparently the entire staff just loves "Dr. T-", so I gave his office a call.  That one call began a relationship that began in 1997 and continues to this day.  I really do wonder if he doesn't walk on water in his spare time.

After a week of in-hospital testing to try to figure out why I had so much bloating, pain and now barfing, Dr. T- told me he couldn't find anything wrong and had to discharge me.  Much as I love the man, I got a bit pissy with him.  I sank down in the bed, pulled the covers up to my chin, stuck out my lower lip and said, "I am NOT leaving this hospital until someone cuts me open and looks around."  He didn't have much hope of convincing a surgeon to perform a diagnostic laparascopy, but Dr. T- appeased me and called in "Dr. K-",  General Surgeon.  These two docs have been quite the dynamic duo in west Houston medicine for decades.  God help me and their other patients when they retire.

I managed to convince Dr. K- to take a look at my internal workings, so the next morning found me in the OR.  Surprise!  He was greeted with quite a mess: my gallbladder was about to rupture (no stones) and adhesions (scar tissue) had obstructed my intestines in too many places to count.  None of that mess showed up on the extensive tests then, or every time it's come back since.

The years rolled by with me averaging one or more surgeries a year, and Drs. T- and K- on more intimate terms with my insides than my outsides.  I am now missing my gallbladder, appendix, uterus and 2 feet of colon.  The only thing that won't go away is the scar tissue.  That's been the gift that keeps on giving.  The pain, nausea and vomiting finally got bad enough that I couldn't continue working, and I began seeing a pain management doctor.  That's when depression knocked at my door.  Actually, it knocked the door down.

Meet my pain shrink, "Dr. B-".  The pain doc asked me to give therapy a try and I reluctantly agreed.  I was no different from most other pain patients.  I'm not crazy!  I'm in pain!  Best thing that could have happened to me.  Those of us who deal with chronic illness eventually end up dealing with depression on top of everything else.  Our lives are over.  Finished.  Kaput.  We fall into a trap of defining our lives by our illness.  "I can't do X because of my pain.  I can't do Y because of my pain."  And finally, "I can't do A through Z because of my pain so why am I here?"  Dr. B- got me to see what I could still accomplish in spite of the pain.  I can still have a life - with pain.  I can still have a marriage - with pain.  I can still have friends - with pain.  What I refuse to do for one more minute is let my pain steal my joy.  

Like a bad boss or co-worker, pain is something that can be dealt with without cutting off our noses.  Pain is only a small part of who I am.  It does not stand for all of who I am.  I had to train my family and friends to see it that way too.  How many "get well soon" cards did it take before they finally realized I was going to be this way the rest of my life?  Some folks still can't believe that 21st century medicine can't cure what ails me.  If I can accept it, why can't they?  

Then came the comments about the narcotics I am prescribed for the pain.  The misinformation about opiate therapy among not only the population at large, but within my own family and circle of friends was not to be believed.  I can't tell you how many times I've had to explain the difference between addiction and dependence.  Some people just won't be educated, and the ones who kept trying to "save" me are no longer part of my life.  It's too short to keep butting my head against a brick wall of willful ignorance.  

The people who are still a big part of my life understand that I will not focus on pain and illness.  They celebrate the good days with me and ignore the bad days.  After all, another good day will come around sooner or later.  Sure I miss out on certain events, but not all of them.  Sure my life is totally different from where it was headed before adhesions turned it all upside down, but is that necessarily a bad thing?  I don't think so.  The mental work I've had to do has had very unexpected benefits in other areas of life.  I no longer ask, "Why me?"  Why NOT me?  I'm not so special that bad things can't happen to me just like anyone else on the planet.  I've found more strength than I ever knew I had in dealing with chronic pain.  That's a good thing.  I've learned to enjoy life more than when I was healthy.  That's a good thing.  I've found compassion in my soul for other people that I never knew had.  That's a good thing.  I will not go quietly in the night.  I am still here, I choose To Be.