Wednesday, August 24, 2011

A Recovering Human

I’ve decided that one of the worst things about chronic illness is a complete loss of dignity.   Never mind the misery of nausea…and the pain and discomfort of a digestive system gone rogue…let’s talk about the fact that I have discussed my bowel movements in infinite detail with a multitude of complete strangers. Let’s talk about the fact that my bodily functions are now more newsworthy than earthquakes, hurricanes, and dictators.  Yeah, you think that’s bad enough…now let’s talk about what happens when I don’t wax my upper lip for over two months. 
I’ve been poked, stabbed, drugged, and interrogated by a legion of doctors and nurses…and I guess, eventually, the inevitable happened…I just started to feel less human.   I mean, not inhuman like a zombie or reaver (Firefly fans?).  Although, I’m sure given the right lighting…I could be mistaken for either.  I don’t really walk anymore.  I shuffle.   I have huge dark circles under my eyes and a pasty complexion from malnutrition.  My brain functions are shoddy at best…and my hair is a hot mess 24/7.  Ok, so, yeah…I totally could be mistaken for the undead.  Huh.  Note to self. 
So, I guess all this to say…when Dr. Schiller (the specialist in Dallas) spoke to me like an intelligent woman who was NOT losing her mind…I felt human again.  I was almost more grateful for that than I was to finally have a tentative diagnosis. 
He spent almost 2 hours with me…coming in and out of the room between examinations and his review of my huge stack of medical records.  When he finally came in to tell me his conclusion the first thing he said was: “We doctors are trained to find the one thing that is causing all your symptoms.  In your case, I think you have several things making you sick.”   He used a chart to describe in detail how my biliary system was in full trauma (probably triggered by a stomach virus)…because of my lack of gallbladder; my bile acid was retracting into my stomach and playing hardball* with my stomach acid.  And because I wasn’t eating (eating=nausea) the bile acid most likely started to eat away at my stomach lining.  In addition to the napalm in my stomach, the bile was running rampant through my intestines overnight, where instead of being recycled…it would instead pool in my colon.  These two things alone are enough to cause constant, unrelenting nausea.  Unfortunately, that wasn’t the end of his diagnosis.
If you remember, I said I’ve been experiencing off and on bouts of severe nausea for the last few years.  Dr. Schiller also diagnosed me with a somewhat rare condition called Cyclical Vomiting Syndrome (CVS).  It’s common among children and pot smokers, but not that common with regular ‘ol gals like me.  Researchers have linked this syndrome to migraines.  Yep, that’s right…I have migraines that manifest in my stomach without an actual headache.  Apparently, we all have two receptors in our brain that are a direct link to our stomachs…I know, right?  Who knew?   CVS “episodes” have the same triggers as a migraine…stress, hormones, fatigue, or even something as simple as a sinus infection.  It helps a lot to know what could trigger my CVS…but, ultimately, it’s a chronic condition with no cure. 
Dr. Schiller prescribed me a huge cocktail of drugs designed to counter the bile acid and CVS.  He mentioned that he would probably be able to wean me off of a few of them eventually…but that they could take up to a month to really balance my system.   I was optimistic that my new gold-studded drugs would work faster than that…and I would be back to normal in two winks.   Heh.  I’m sure by now you’ve noticed my use of a past tense verb.  I was optimistic.   
Turns out, taking a lot of new drugs comes with its own set of somewhat brutal side effects.  One med makes me feel like I’m walking through pea soup for about 15 hours after I take it…and one med wreaks painful havoc on other aforementioned stuff (see: bodily functions).  Needless to say…it’s slow going.  I have to set alarms to take my medicine because they have to be swallowed in a well-orchestrated schedule designed to make me feel like a ninety year old.  But despite all this…the nausea has loosened its grip.  And for that…I am excruciatingly grateful. 
And because the nausea has lost its intensity…I have seen small glimpses into the return of my humanity.  I registered the feeling of boredom the other day…that was awesome.   And I tweezed my eyebrows.  My mom and dad are lovingly forcing me to walk around more…so, that I can regain strength to my atrophied muscles.   And the other day, I woke up with the need to shop.  I know, right?  Totally a good sign.  I know that I have more recovery ahead of me…it’s going to be slow going (which is counter to my personality, by the way), but feeling human again gives me hope.  And where there is hope…there is healing.
But the truth is, I’m not writing this blog entry to torment you with the details of my recovery…but to offer you my profound gratitude for your prayers.  I started this whole blog in order to expound on the glory and wonder of God at work in Joplin, Missouri in the days and months after a devastating tornado.  I thought that meant I would tell the stories of struggles and victory in the lives of those around me.  Heh.  I totally got sidelined.  I guess Abba wanted me to know how it felt to be carried on the shoulders of the saints…so that instead of witnessing His mercies…I could experience them personally.   So, to all my friends, family, and strangers who have been interceding on my behalf…thank you.   
Dr. Schiller diagnosed me.  The medicines will eventually heal me.  But God is still good…I still have dignity...and you are all my personal heroes. 

*Note: all words used to describe my medical condition are here-to-with subject to my creative license. 

Wednesday, August 10, 2011

Suffering Sucks

For those of you who don’t already know…I am not well. 
I have been suffering on and off from chronic nausea for the last couple of years, but on July 4th…on a fateful drive back from a fun weekend in Dallas…the acute, debilitating nausea took hold of my body and has not let go. 
This means a lot of things.  It means I am not longer able to work.  It means I had to temporarily relocate to my parents so that my mom can be my constant caretaker.  It means I rarely eat…and only when my mom puts it in my hand.  It means my hair has started to fall out from malnutrition.  It means I no longer fit into my favorite polar bear pj bottoms.  It means I’m now taking copious amounts of drugs…some to help me sleep, some to help the nausea, and some to help me cope with being an invalid.  It means I watch WAY too much HGTV.  It means test…after test…designed to make me more miserable.  It means a four day stay in the hospital.  And most recently…it means a trip to Dallas (tomorrow)…to get what I hope will be a diagnosis with a sub-specialist. 
The question that I’ve gotten above all in the last month has been…”how are you doing/feeling?”   I have, for the most part, remained silent on this subject.  Many lovely voice mails and text messages have gone unanswered…because I find “how are you doing/feeling?’ to be an exhausting question.  But I keenly feel the love and concern from my friends and family…so, I feel compelled to crawl outside of myself for a moment…and answer.
This is how I’m doing:
1.       I am not a good invalid.  I’ve read books and watched movies of inspiring invalids.  I am not one of those people.   I have emotionally and mentally crawled into a cocoon.  This isn’t a bad thing…it’s just humbling to realize no one’s going to write a book about my method of coping.
2.       Nausea has to be the single most miserable feeling in the world.  You know that feeling right before you throw up?  When your head starts to tingle?  I feel that every day with little relief.  Some days I just cry it out.  Sometimes the crying helps. 
3.       When I feel well…people are my absolute favorite thing in life.  When I’m hanging on to my last shred of energy…people stress me the heck out. 
4.       I have read more books in the last month than I have in the last 3 years.  I finally broke down and treated myself to a Kindle.  It’s my “get well soon” gift to myself.
5.       I think a lot about the woman in the Bible who bled for twelve years.  She’s my new hero.  Seriously…12 years.  And she had enough faith to reach for the corner of Jesus’ cloak.  My prayers these days sound more like whimpers.
6.       My great sadness is that big events are happening all around me…and I’m good for nothing.  Becky, Jen, Anna, my co-workers, and my SYTYCD club…someday I will once again join the land of the living.  Please save me a seat?
7.       Most days look like this: sleep, take drugs, read, lay on the couch, watch HGTV, take drugs, sleep.
8.       I feel your prayers.  Please, please, don’t stop.  I need them desperately.  Please pray for my trip to Dallas tomorrow.  My appointment is on Friday, August 12 at 3:00.  Please pray that the doctor is urgently aggressive about finding a diagnosis.  And pray that I make it to Dallas without breaking into a million pieces…riding in cars is not my favorite thing to do these days. 
Suffering is an ugly beast.  For all those out there who are also suffering…it sucks, doesn’t it?  Maybe someday I’ll be able to expound on all the lessons I’ve learned during my convalescence.  But when my body is wracking with dry heaving…and I’m sobbing from utter misery…all I think about is how wonderful it will be to no longer be in this body.  Please don’t misread that sentence…I’m certainly not suicidal.  But I do think a lot about paradise…and how my suffering is only temporary.   I’m clinging to the hope that this season in my life will soon reveal God’s good and perfect plan for my life.  But until then…here’s what gets me through the day:
When Jesus got the message, he said, "This sickness is not fatal. It will become an occasion to show God's glory by glorifying God's Son."   John 11:4 (The Message)
Thank you for caring, friends...I had to "up" my text message package because of your concern.  That makes my days less rock.  I like you.