The Pain Saga: The Lap and Beyond.

This is part two of my pain diary.  Everything is behind a cut as it's massively long; feel free to skip it if so you desire.

This particular section is also written as a list instead of a diary, mostly as things happened much faster.

The Pain Saga: Pre Lap Era

So, now that I have some answers, I figure I can write up what life has been like the past few years leading to this biliary dyskinesia diagnosis.  Perhaps writing this up will help some random Google traveler to figure out what's up with them before they suffer as long as I did!

I also want this listed here so I don't forget in the future what I went through during this time period.  This literally has been a saga in my life--2011 to now--of non-stop pain issues, all starting around 2008.  So it's not so painfully dull, I'll add in some pictures from each period of time.  Perhaps seeing how well I hid my pain will explain why this took so long to solve.

I'll also put this all behind a jump cut so I'm not clogging up anyone's browser against their will!

A (Happily) Failed Test

My doctor called with the results of my HIDA scan with CCK.  My gallbladder doesn't work.  Though it looks totally normal on scans (past being a wee bit larger than expected) and though it is totally stone-free from what they can see, it doesn't eject bile anywhere near the rate it should.  The office didn't give many details past that and a, "It doesn't work much at all--so little that it has to come out."

I nearly cried...I was shaking on the phone as I heard words that, though scary, were such a relief.  I'm not crazy.  There's something wrong with me, and they finally found it.  Three years of suffering, and I finally have answers!  I shouldn't be so elated to need surgery, but I finally--FINALLY--know why I've been in pain so long.

I know why my digestive system randomly rebels.

I know why I get stabbing pain in my ribs that takes my breath away if I move wrong.

I know why my entire abdomen feels inflated if I eat (seemingly) random foods.

I know why I never can fully know how a meal will affect me.

I know why I suddenly have had heartburn problems for the first time in my life.

I know why I am nauseous every single day of my life with no rhyme or reason.

I know why I'm so unbelievably exhausted all the time.

I know why so many of my aches and pains make absolutely no sense when compared with my known medical problems (supposed estrogen sensitivity and a chronically inflamed right ovary that has a near-ridiculous affinity towards making functional cysts that are smaller than my pain levels indicate.).

I'll still have cyst problems with my ovaries, and there's no way to know exactly what all of my symptoms come from my failing gallbladder before surgery is done, but the bizarre pain parts of my symptoms finally have some plausible, tangible answers with a solution at hand.  Within a few days, I'll have an appointment scheduled with a surgeon to determine when my gallbladder will be removed.  Due to a family history of gallbladder's bursting, mine is to be removed to avoid that possible complication.

On another interesting side to this, we know now over two decades later why my dad's gallbladder seemingly went from totally normal to gangrenous overnight.  (Back story from what I can recall--when I was really little, my dad went into an ER with horrible pains and was sent away.  He soon went back in with the same symptoms and a very high fever.  They decided to remove his gallbladder "electively," mostly to shut him up.  Lo and behold, when they got inside of him they found his gallbladder was not only leaking, but it was gangrenous from leaking for such a long time.  At some point, it burst.  No one knew why or how it happened, but it baffled all doctors as he had no symptoms of gallstones prior to the event.  His mother had her own gallbladder removed under similar circumstances, but hers never burst or developed gangrene.)  My PCP thinks my dad's own gallbladder stopped working like mine and, over a period of years, damaged itself to the point of bursting.  We're glad I didn't go that route, and my PCP and his office are operating assuming that they caught mine in time.

So, praise God!  There's a light at the end of this tunnel!

Gallbladder, Round Two

My PCP ordered a HIDA scan to rule out gallbladder once and for all as the cause of many of my issues.  I have to be at the hospital for it between 7:30 and 7:45 tomorrow morning.  Time right now?  4:15 am...this is NOT the time to have insomnia, brain!  And since I have to fast for this, I can't even down chamomile tea to knock me out.

*insert the loud sound of one Cherish's head hitting a desk in frustration*

This would be a significantly smaller problem if the HIDA scan was the ONLY thing I have to do tomorrow.  I'm returning to work at noon, partaking in a long, oft-tiresome meeting, then going straight from work to help set up a company outreach event we do annually until late evening.  That event will kick off on Saturday at 7:30 am.  To say sleep deprivation isn't allowed for tomorrow would be an understatement, but I fear that's just the reality I'm facing.

...Maybe I have a copy of "Walden; or, Life in the Woods" from college...that always knocked me out back in my English major days.

(...no offense to you Walden lovers...I just am NOT one of them.  I understand the greatness of Thoreau's work from a literary perspective and a cultural one, but I have no love of it personally.)

Nevermind

Gallbladder was 100% normal.  Pain isn't "typical" of endometriosis.

So, once again, I'm sent off with no answers or any hope of answers.  I should know better than to expect anything more than that.

Hoping for Spoons

As mentioned in my previous post, I have unexplained pain issues that flare from time-to-time.  I've been doing way better in recent months, but my pains still flare up more than my husband and I would like.  My gynecologist recommended I bring up my findings from a diagnostic laparoscopy done in August 2013 to any doctors I see, partially as she can't figure out if I have endometriosis or something else.  As my moving last year meant I (finally) changed my primary care physician (PCP), I mentioned them to the new PCP, Dr. T., on Monday.

I don't want to go into details just yet, but I'm being sent for a very routine test this Saturday to determine a course of treatment.  Dr. T. thinks my previous surgery's results have a glaring clue my previous PCP should have spotted.  If  Dr. T, is right, 90% of my symptoms can be explained by one medical condition--one that a single laparoscopic surgery would cure.  My husband and I are kind of hoping I do, indeed, have this condition.  Endometriosis is a lifetime struggle; this other condition is a surgery-and-mostly-cured kind of thing.  We like the latter's prognosis a lot more.

If I do end up needing surgery, I plan to schedule it as close to the Christmas break at my job as possible.  That'd put the least amount of strain on my coworkers and also give me 3 solid weeks to recover.  I'd be good as new by the time work started up, though I'd be pretty floppy over Christmas itself.  Considering I had full blown shingles two Christmases ago, I'm sure I can handle that.  My husband is 100% supportive of whatever the results show, as is my family and his.  If I end up needing the surgery, I'm in good company--many family members in his family and mine have had it done.

So, as strange as this sounds, pray the test on Saturday shows I need surgery.  I'll explain more when I have the results.

Spoons...I Have a Distinct Lack of Them...

A few weeks ago, I had one of those days, seemingly from the moment I got up.  When I got up, I was doing pretty okay.  That's pretty good for me, to be honest: there are some days when I'm lucky to be up and moving.  Y'see, doctors think (but "cannot diagnose at this time") that I have endometriosis.  In my case, I get wicked pelvic and abdominal pain that nothing--not even maximum doses of ibuprofen or twice-a-day doses of Aleve--touches.  I could literally feel the pain before I fully woke up, and I would still feel it as I descended into sleep at night.  This went on for well over a year before even one doctor took me seriously.

As of about a year ago, I'm on a newish-to-me medication called norethindrone that, for the most part, is controlling most of my symptoms; I also found that limiting my caffeine helps keep some of the flare-ups at bay.  However, I still get random, horrible flare-ups of my symptoms from time to time, and often I can't find a trigger that led to said issue.

A few weeks ago, it was one of those days.

I woke up with my entire pelvic cavity spasming.  Think of muscle (or, if you're a woman like me, period) cramps, but make them take over your entire lower pelvis and make them borderline unbearable.  I also feel like I've got golf balls inside of my pelvis, one on each side but away from my actual hip joints.  Once I was fully awake, I quickly realized I had dull aches under my ribs on the right side and my entire abdomen was cramping.  My lower back is also cramped up...okay, no, my entire back.  These pains kicked in early the day before, and they'd been coming and going.  Advil and Aleve are my usual stand-bys for this mess: I take Advil if they're on the milder side and Aleve for longer lasting and/or tougher flare-ups.  That day was one where I counted down the minutes until I could take another 12-hour dose of Aleve, which was just barely taking the edge off my pain.

On days like those, I refer back to what a past student taught me once.  It's called The Spoon Theory, and it is mean to explain life with chronic pain and/or illness to those who don't have such challenges.  Basically, everyone wakes up every day with a set amount of spoons.  Those spoons have to last you the entire day as you cannot obtain anymore for the day, though you can bank spare ones from the previous day.  This is normally a very easy thing to do as many of our daily tasks take no effort (and, therefore, no spoons).  Those with chronic pain or illness, however, have to use their spoons for even the most basic of tasks (like getting dressed, using the bathroom, or [in my case on exceptionally bad days] even the mere attempt of getting into their car to prepare to drive to work).  As a result, their spoons run out faster, and their choices for how their day will go are limited; these people also have to bank spoons at the end of each day as running out may prove to make the next few days impossible for them as they never know how many spoons will be consumed by their conditions.

In my case, I find myself in a strange game of "Can I make it through work or not?" when I have particularly bad flare-ups.  Sitting up in bed--not even getting out of my bed--will take a spoon on those days as that involves bending from the waist.  The drive to work could take three alone (sitting in car and putting the seatbelt across my lap, the drive itself, and getting out of the car), nevertheless the drive home that afternoon.  I also cannot even begin to estimate how many spoons my teaching job could take as I never know how many times I have to move from sitting to standing and back in a day or if I'll have the energy to avoid sitting by standing all day long.  It is a very, very rare day when I can't make it through work, but often I come home too exhausted to do anything but face-plant into the couch.  I normally overuse spoons on my first day of a flare-up making some massive meal my husband and I can reheat for a few days--just to be sure we're both still eating okay.

Despite the pain and the effort ignoring it can take, I'm stubborn enough to go on without people knowing what's happening inside of me.  Often, the only clues people will be able to spot may be a shorter-than-normal temper or a determination to not have to get up out of my chair more than usual.  I carry around a rice bag--essentially, a cloth bag full of rice I heat to work like a heating pad--everywhere I go on terrible days; often, it's my best source of pain relief.  I never bring up why it's with me (even on 90+ degree Fahrenheit days), simply electing to use it when I need it so I can make it through my day.  My students, however, have learned that rice bag, if it doesn't leave my lap, means I'm having a bad day.

Days like those remind me of what I do and why I'm passionate about adult education.  Some of my students are what society considers the worst of the worst: it views them as drains on our resources and useless, selfish people.  However, if I show up at work with my rice bag or if they catch me quickly taking medication between classes, a few of my students step up to the plate.  They go out of their way to not make me get out of my seat in class, bringing questions to me or doubling their efforts to help each other.  They never come right out and tell each other that I'm in pain: instead, they find little, meaningful ways to help me out without making me feel like a sick, weak problem.  When I came back from a diagnostic surgery last summer, students literally wouldn't even let me carry a binder for weeks.  One of them always went and got the binder I needed off the shelf and had it on my table, ready for class.  Another would meet me at my office door to carry the books I needed to our classroom.   A third would walk the sign-in sheet around or bring any papers students finished right to me.

All of these are little things they don't have to do, that no one asked them to do, yet they still took the initiative.  Yes, some of these students have done some pretty horrible things in their pasts.  Others may simply be in the trenches of generational poverty and, sadly, cannot see a life for themselves past the one that they already know and that society routinely (and openly) despises.  Irregardless, they are deserving of respect as fellow people, just as we would want to be treated with respect.

So remember that you can't tell at a glance just what a person is going through.  Teachers (and people) like me may seem like we have it all together but may be literally screaming inside.  People who look rough may suffer in ways they can never describe.  Lend respect and love to all you can, and own up when you have a rough day.

And give yourself some forgiveness for when you screw up.  We all do.