Combatting Hospital Boredom

Ah, the hospital. Where one is sent to rest and recuperate. Yeah, right. Between the noises, the smells, the awful beds, the tests, and the weird schedules, rest can be very elusive. Sleep dances before one like a demented fairy, just out of reach. And boredom sets in.

Daytime television only takes one so far. Books can be difficult to hold. Walking the same loop over and over and over stunts one’s desire to ever walk again. So what to do, with limited mobility and resources but infinite time?

Should you ever require hospitalization, go prepared to deal with boredom. It will happen. Here are my top suggestions for taming the annoying beast:

If you can get a hospital gown, don't close the back and go for a walk. Drop items in strategic places so as you retrieve them you moon staff members/visitors/other patients who annoy you.

Order a nice Chateaubriand with your meal tray. Request an after supper brandy.

If you are in the ER in an exam room and haven't seen anyone in a while, move around the room opening every cupboard and drawer and looking inside. I don't know how they know, but this will bring someone in to check on you quickly.

Obtain a stuffed toy or Teddy Bear. Insist the staff perform all procedures on your stuffie as well as you. Carry on conversations with said stuffie. It is helpful if it is named something along lines of "Gerard" or "Your Majesty". This has the added benefit of bringing in a psych evaluator. And they are REALLY fun to mess with.

Mine is a sheep called Rosemary.

Every time you hear an alarm sound, shout "He shoots! He scores!" really loudly.

Ask a nurse or orderly to help you find the cat channel on the television.

Fun things to do with jell-o (in case you have the misfortune of being served this): mix with mashed potatoes to make a lovely coloured substance. "Draw" pictures with it, using a knife to spread. If in cubes, stack cubes and begin gently wiggling the tray, slowly increasing the strength and speed of the wiggle until the tower topples; experiment with various structures to find the longest-standing. Suck a bit up into a straw and then aim & blow hard and fast on the straw at a specified target.

Carefully tear pictures or quotes out of exceedingly old magazines from the waiting room or Day Room. Make a collage using plasters or medical tape as adhesive. Hang the collage on the wall directly across from the nurses' station.

Remove every pad, diaper, and cloth you can from the cupboard in your room (or a passing cart). Fashion these together into a general body shape. Place this creation in your bed, under the covers, and attach yourself to the tail end of the medical student/intern rounds. When discovered and told to return to bed, protest loudly: "But there's someone else in my bed!" (Again, this will bring in a psych evaluator....)

Request a bedpan, otherwise known -- for some reason I have never discerned -- as a "hat" (when used on a toilet to collect urine). Wear said bedpan on your head every time you use the toilet. Keep a running list of how long it takes each staff member to get the joke.

And my favourite: rearrange flowers to match your or other patients' medical conditions. Heart condition? All red. Nausea? Green and yellow. Orthopaedic surgery (with bruising)? Blue, black, green, and yellow. You get the idea. It might have been the drugs I was on at the time, but coming up with colour-coded flower arrangements for various medical conditions once kept me happily engaged for an entire day.

Boredom will do that to a person.

Bland, Thick, & Lumpy OR Death By Low Residue

Lord, have mercy.

I do not like bland food. I mean, I really do not like bland food. My mother discovered my penchant for spicy food when I was only two and I single-handedly ate almost an entire bowl of chile con queso she had made for a party. At age five or six we were eating supper when I noticed the meat was different and asked, "What kind of meat is this?" (It was venison procured by my father.) In a fit of God-only-knows-what-he-was-thinking my father answered, "It's Bambi." According to both my parents I merely blinked my eyes once before pronouncing, "Bambi tastes good," and cleaning off my plate with relish.

When I was pregnant with Boo I ate pretty much anything and everything I wanted. The only food which regularly made me sick was plain, un-spiced chicken breast. For some reason people kept serving this to me under an assumption that I could not eat normal food while pregnant. I ended up throwing it all up every. single. time. Bland food and I do NOT get along.

Fast forward to today, three and half weeks post-op after my latest Fun-Filled Hospital Extravaganza, and I am on a low residue diet.

The makings of a typical low residue meal. Yee haw.

A low residue diet, for those of you who have never had the privilege of experiencing one, is a diet designed to both lessen the frequency and thicken the consistency of one's output. By which I mean this: thicker poop and fewer instances of messing one's self. Yes, it is definitely as fun as it sounds.

The reason I'm on this diet is because I had a pouch advancement on June 26th (they cut loose my J-pouch and pulled it down into my rectum) in order to (hopefully) deal once and for all with the @#!$% fistula I've been fighting for the past three years. This was part one of a two-surgery procedure. (For those keeping score, surgeries 12 and 13.) I then had to wait around in the hospital for two weeks, almost completely incontinent -- yes, that was as much fun as it sounds, too! -- until the second procedure on July 10th. During this procedure the ends of the pouch were trimmed and fully stitched in place. Voila! One exceedingly sore hiney and a LOT of poop to contend with.

So. Here is a list of food & beverage options I get to choose from daily: oatmeal, white rice, potato, white pasta, white bread, decaf tea, water, multi-vitamin juice (one small glass per day), Actimel (also one per day), plain meat, very small amount of cheese, banana, applesauce, and avocado. As a treat I can have a tiny bit of hummus on plain crackers, and later today I might try some beets, as I've been handling the banana, applesauce, and avocado without too many problems. Woo hoo, party time!

For extra excitement, I also get to drink a glass of water mixed with Questran-A three times a day, before each meal. This is a powdered medicine which works in the gut to cut down on the acidity of poop, hence helping to cut down on both urgency and hiney pain. (Do not be fooled: Butt Burn is no laughing matter.) This is a good thing. The yucky thing is that while the powder is completely tasteless, it makes the water thick. And lumpy. Thick, lumpy water three times a day. Yum. Boo & Little Toot have taken to counting how long I can keep from gagging after each glass; so far my record is three seconds.

This combination of bland, thick, & lumpy is slowly getting to me, folks. Fair warning: if you don't see me for a while, check the corners to see if I'm sitting in one, quietly sobbing while trying to down a glass of Questran-A enriched water. If I'm not there or, of course, in the bathroom, then I am afraid I might have wasted away. Please make sure my tombstone is engraved with the following: "Here lies Feisty. She survived Ulcerative Colitis, fistulas, 13 surgeries, and innumerable side effects but was finally finished off by Gastronomic Boredom. May she rest in peace and enjoy that Great Baked Brie in the Sky."

Umbrellas & Butt Wipes

Here's the current lay of the land:

• Fistula repair definitively failed; another surgery needed.
• Must choose between a muscle graft (MAJOR surgery) and a permanent ileo (major surgery).
• Being sent to an IBD surgical specialist for his opinion on which procedure would be better; referral letter was lost (grrrrr!!!!!!) so appointment isn't until April 15.
• Which means surgery won't be until May. With, depending upon the procedure, a 3 to 12 month recovery period.
• And we're moving in July.
• In the meantime, the fistula is acting up more than it has in about a year, causing much discomfort, some pain, and a blasted evil yeast infection. (@#$!@%)
• The stoma is now tipped flush with my abdominal wall, which means I resemble raw hamburger where it empties. If the surgery isn't until May, I will need a surgical stoma revision in the next few weeks.
• Abdominal & stoma pain have been plaguing me for a week; the symptoms are beginning to look like adhesions... Which also require a surgical fix.

So yesterday was one of "those" days. Tears, frustration, hopelessness. I sent a whiny missive to a friend who also fights with a chronic illness and used a particularly colourful phrase to describe what I felt like I was dealing with. She responded by saying, "I'll bring the umbrella and butt wipes."

I prefer unscented flushables, but chamomile or aloe will also work!

This, my friends, is what is needed on "those" days: a friend who doesn't roll their eyes, get grossed out, tell you to "just deal with it", or smile tightly. Instead, what is needed is someone with a bit of sass, who understands, is empathetic, but doesn't let you wallow in self-pity either. It's a gift, this ability. And these friends are a HUGE blessing.

Today I feel much better, physically and mentally. Here's what I'm doing to continue to fight:

• Writing this.
• Doing laundry (love the fresh smell).
• Making garlic knots. Because I want to.
• Sitting in the sun at some point for 10-15 minutes.
• Plowing ahead with some things I need/want to get done around the house.
• Counting each little bit I get done as a success.
• Writing a letter to a friend who really needs a pick-me-up.
• Praying for those who are in so much more need than me.
• Goofing around with Boo & Little Toot.
• Right now, after I post this, I think I might have another cup of tea and a scone.

And maybe, just maybe, I won't need the umbrella today. (I always need the butt wipes!)

A Down Day

It hits out of nowhere.

Well, not really nowhere because I have PTSD and am fighting an infection which makes me tired and am facing the difficult truth that I a) did NOT develop a new fistula (which means THREE repairs have now failed) and b) I must now make a choice between a really hard surgery and a really, really hard surgery in order to move on with some semblance of life. All around me hard things are happening; deaths, illness, struggles. I feel powerless to help myself, let alone "be there" for anyone else.

So, okay, there's background.

But mostly I think I do a pretty good job of dealing with it. After the initial post-surgery fugue and the inevitable crash when the bad news is first delivered, that is. (Those are really bad days, just ask Jasper.)

After the initial shock, however, after the crying fits and the exhaustion and the utter weariness, there comes a kind of -- well, not acceptance, but sort of an even period of coping. Of just moving on. Realizing that it is what it is and nothing I can do will change it so I might as well get on with things. There comes a sort of equilibrium.

"I'm on the hunt for who I've not yet become,

but I'd settle for a little equilibrium."

-Sara Bareilles, "Hercules"

It's fragile, though, this equilibrium.

Sometimes I know what sets it off. More bad news from the doctor, a horrible news story, that feeling that no matter how hard I try I will never be the mother I want to be. (That last feeling may or may not have been set off today by one of my offspring managing to slip out of the house without brushing her teeth. Again.) Sometimes nothing really sets it off, I just wake up with a weight holding me down, an utter feeling of exhaustion, and the knowledge that today is going to be a Down Day.

In the former circumstance I can more or less deal with it, with help. I can cry and express frustration and talk with people about why I'm upset. In the second, however, I never really know what to say. How do you explain what it's like when everything just feels heavy? When you are so damn tired that even the thought of a shower exhausts you?

These are the days when, if I do make it into the shower, I stand there and cry. For no reason. For every reason. Because-- 

Just because. Because even the shower drains me, and I don't know why.

I hate it; I hate these Down Days. They suck everything into an abyss and I. Just. Can't.

Jasper and I were speaking with a friend once, in the midst of several Down Days, when the bad news just kept coming, when even those we thought understood made it clear they had no clue. We were describing what was happening all around us and to us and in us and I was frantic to be understood, practically frenetic with my need to be understood. And this friend, with infinite love and understanding, looked me straight in the eye and said, "That is really shitty. It is just completely shit."

And I thought, "Yes. Yes, it is." And I began to feel better. Because sometimes, sometimes, everyone just needs someone to acknowledge the poop.

Tiny Feisty

This is Baby.

To be more precise, this is Baby holding her Daddy's finger. Baby was born in October with a heart condition which required open heart surgery within the first 5 hours of her life. Since then she has been through a myriad of smaller treatments, a collapsed lung, and too many ups and downs to be counted. Very recently a clip installed in her heart during the initial surgery broke, requiring an emergency surgery. Baby's parents were told she wouldn't survive. With much prayer and hope they sent her off to the surgery, whispering to her, "Prove them wrong."

She did. She proved them amazingly, beautifully, phenomenally, feistily wrong.

The latest update is that she is doing better than anyone expected; she may be able to go home at the turn of the year or soon after.

Baby's father is a baseball fan; in a moment of sleep-deprived silliness at the hospital, Baby's Momma grabbed his ball cap, punched it inside out, and slapped it on his head as a Rally Cap. A picture on Facebook was all it took to start a landslide of "Rally Cap for Baby" photos being sent in, with assurances of prayer and support from all over the globe.

All Saints Maastricht Uni Group (& Bubba) Rally for Baby

Baby's Daddy has been printing the pictures out, hanging them by her bassinet in the NICU. The nurses are blown away by the amount of support Baby is receiving; the surgeon and the anaesthesiologist are dumbfounded at Baby's strength through all of this. Baby's Momma and Daddy keep praying, keep hoping, keep loving. What can I say? They believe in prayer; they believe in hope; they believe in love.

I know Baby's Grandma; she's a pretty feisty lady. I know Baby's Daddy (he once interned for me while I was preggers -- every 20-year-old guy's dream job!) and he's a pretty feisty guy. I "know" Baby's sister and Momma through Facebook; they look to me to be the very picture of feisty gorgeousness. And Baby is proving herself every day to be more feisty than the rest of us put together.

So Baby, as dubious an honour as it may be, I pronounce you a Tiny Feisty Broad. Your Momma says you were a kicker in the womb. Keep kicking, Baby; keep kicking!

"Nothing is impossible. The word itself says, 'I'm possible.'"

(A favourite quote of Baby's family, from Audrey Hepburn.)

Your turn: if you would like to support Baby in prayer, send me a picture
of you & your Rally Cap.

I promise I'll get it to Baby's family.

If at first you don't succeed....

...try, try again.

Not that I am particularly good at that. Actually, I'm pretty miserable at it. But here I am, deciding that I need the practice, deciding that I will not let stinky news get me down. With all the poop in my life, after all, I'm pretty used to stinky things.

Surgery number 10 is coming up. I asked for dancing girls or a solid gold bed -- some sort of compensation -- but they apparently won't be forthcoming. What will be forthcoming is another mesh repair for my #@!%&^ fistula. A rectovaginal fistula, which you can read more about here. (Be forewarned, it's gross.) This will be my third attempt at a repair, and my last chance with a "simple" repair; the next step is a muscle graft which, for a variety of reasons, is NOT what I want to do.

Essential tool for trying again.

To be frank, I'm scared. Not of the surgery itself, which I have already been through once, and not about the skill level of the people performing the surgery, because I know them and trust them. Just, because. Because fistulas are notoriously difficult to repair, because I've already had three surgeries associated with this fistula and it is still here, because no surgery is ever a walk in the park. Because I am so damn tired of all of this.

And yet...

And yet, the minute I stop trying is the minute I might as well cash it all in and I am assuredly NOT ready to do that. Not in the least. Besides, who would listen to all of Jasper's bad jokes? Who would ride Little Toot and Boo about chores? Who would make sure that Bubba has a fresh supply of rubber duckies?

So I'm trying again. In so many different areas, I'm trying again.

And, just because we can all use more thrash Praise & Worship in our lives:

TRY AGAIN

© 1989 LIMB RECORDS/LOST AND FOUND, BOX 305 LEWISTON, NY, 14092. ALL RIGHTS RESERVED.

YOU MAKE ME WANT TO TRY AGAIN.

I THINK IT'S SOMETHING I CAN FINALLY UNDERSTAND. YOUR LOVE IS LIKE THE OCEAN, TURN MY PAIN INTO THE SAND.

I THINK IT'S SOMETHING THAT I CAN KNOW. YOUR LOVE IS LIKE THE SUNSHINE AND MY TROUBLE'S LIKE THE SNOW.

I THINK IT'S SOMETHING FINALLY TAKING A HOLD. OH YOUR LOVE IS LIKE THE FIRE AND MY HURT IS LIKE THE COLD.

I THINK IT'S SOMETHING FINALLY LEAVING A MARK. OH YOUR LOVE IS LIKE THE LIGHTNESS AND MY HEART IS LIKE THE DARK.