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."

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.

Healing, Part Two (In 55 Easy Steps)

On October 31st I had a fistula repair performed. In the bad news category, it was my third attempted fistula repair. In the good news category, it turned out to be a new fistula, which means the two repairs on my original fistula worked. In the bad news category, this means I have a new fistula. In the further bad news category, the fistula drainage didn't stop enough to allow proper healing to the repair site, so on November 22nd I had another temporary stoma (my fourth) installed. In the good news category, the surgery went very well and there were no adhesions involved, so the surgeon is extremely hopeful about the outcome.

Refer to #31 and see how many you can identify.

Life is full of poop. Sometimes it's more, sometimes it's less, but the fact is that all of us have to deal with a certain level of both metaphorical and literal poop. And the sooner we learn to do that without whining or running away or collapsing, the better off we are.

I apologize in advance for any unpleasant imagery this post puts in your head. On the other hand, hey, you're here under your own volition! Gross or not, this is my reality. And if your sense of humour is slightly twisted, it is kind of funny...  Afterwards. So, for those of you silly bored reckless brave enough to continue, I offer you:

How to Change a Stoma Appliance in 55 Easy Steps

1. Wake up repeatedly during the night and check the base of the stoma bag to make sure it is still securely fastened to your skin.
2. Finally fall asleep soundly around 4:30.
3. Awake with a start at 7:05 to find that yes, you have sprung a leak.
4. Cuss.
5. Get out of bed. As you are still only 10 days post-op and cannot sit up normally, this involves rolling onto your right side, causing more leakage, and pushing yourself up to a sitting position.
6. Bite your lip and sigh. Pledge that you will not cuss your way through this entire procedure.
7. Stand up. Check bedding and execute small happy dance at the knowledge that you caught the leak before it soaked through all the bedding & the waterproof pad you now sleep on, which means you do not have to strip the bed at this immediate moment.
8. Realize that your little happy dance caused the stoma to become active. ("Become active" is a euphemism for "spew poop".)
9. Cuss as you grab a pile of compresses to cover the leak. Grab robe.
10. Run (well, okay, shuffle-jog) to the bathroom.
11. Empty the clean laundry out of the washing machine. Take off your pajamas, one-handed (remember the other is holding bandages to the leak), and throw them straight into the washing machine.
12. Sit on toilet. Empty stoma bag into toilet. Ask yourself again why you ate so many green onions at supper the day before??!? Gingerly peel the wax base of the stoma appliance off your skin and stitches/steri-strips.
13. Cover stoma with toilet paper to prevent further leakage incidents. Throw everything in the garbage can. Make mental note that garbage must be emptied ASAP.
14. Hop in shower.
15. Begin washing.
16. Begin relaxing in the warm water.
17. Watch in amazement as your stoma becomes active (see #8 above) and does a very admirable imitation of a sprinkler head. Specifically, the impact rotor type.
18. Cuss.
19. Wash shower walls and tub.
20. Finish showering.
21. Dry off.
22. Grab toilet paper to cover stoma 2 seconds too late.
23. Grumble and moan, remembering previous pledge not to cuss through the entire exercise.
24. Clean up. Place bathmat in washing machine.
25. Throw on robe.
26. Debate where to put on new appliance. In bathroom? Feel too weak to stand for another possible 20 minutes and rule out lying on cold floor. In your bedroom? Not ideal, as DH is still sleeping and you'd rather not wake him up for a variety of reasons, including embarrassment/frustration about the leak.
27. Peek out bathroom door, spy that Little Toot is up and her bed is free. Score!
28. Shuffle to bedroom, holding TP on stoma and robe (more or less) secure with one hand. Gather up as many supplies as can in the other. Shuffle to Little Toot's bedroom and dump supplies.
29. Repeat.
30. Repeat.
31. Lay out supplies on bed: two towels covering bed, compresses, adhesive-remover wipes, stoma appliance base, appliance paste, stoma powder, medical scissors, half-moon plasters, stoma appliance bag, small medical waste bag, and hairdryer all within reach.
32. Feel around blindly under Little Toot's bed for the extension cord you know is there. Wonder what else is under there. Make mental note to have Little Toot clean out from under her bed ASAP.
33. Find power strip, plug in hairdryer.
34. Lie down.
35. Using medical scissors, cut a 30-mm hole in the wax stoma appliance base and place base under your bum to warm up and become more pliable. Wonder who first used this technique.
36. Wipe stoma area down using adhesive-remover wipes. Wonder why they are made so thin. Discard used wipes.
37. Slowly dry stitches/steri-strips and stoma area with hairdryer on low setting. Wonder how many of your friends and acquaintances are going to blow-dry their abdomens today.
38. Grab compresses to mop up small squirt. Re-blow-dry area. Proactively place pile of compresses on top of stoma.
39. Congratulate self for not cussing over squirt incident. Make mental note to add squirted-upon robe to the load in the washing machine.
40. Grope around and find stoma powder; sprinkle a liberal layer around base of stoma; wipe off excess. Discard used compresses.
41. Pray fervently for no more activity from the $%#@! stoma.
42. Retrieve appliance base. Apply stoma paste around edge of hold in the middle.
43. Begin to peel off the base backing so base can be placed on skin; realize that you have applied the paste to the wrong side of the hole.
44. Cuss.
45. Clean off base as best you can. Apply paste to the proper side. Discard used compresses. Apply base to skin, fitting base hole snuggly around stoma. Wonder who spends their time designing stoma appliances.
46. Find stoma appliance bag; snap securely to base and press ring to make sure the seal is tight.
47. Place hand over stoma/bag/base to continue keeping the area warm and ensure flexible and strong adhesion.
48. Check clock. Note time is 8:18. Relax back on pillows, glad to have the process mostly done. Still time to eat and brush teeth before the home care nurse arrives at 9:00.
49. Decide that maybe the 10 minutes of lying quietly and heating the stoma appliance with your hand could be used for some prayer and reflection.
50. Hear the doorbell ring and Bubba bark at 8:20. Listen frantically as Boo answers the door; stink, the nurse is here 40 minutes early!
51. Cuss. But only a little.
52. Spend 10 minutes with the nurse, who inspects the change job closely. Try not to breathe in her face (see #48).
53. Express gratitude as the nurse helps apply the half-moon plaster, which you had forgotten about. Wonder how many people had to deal with improper base placement over stitches before they were invented.
54. Bid adieu to the nurse, get up, get dressed, clean up supplies. Empty garbage in bathroom. Toss robe in laundry and start load. Cook & eat breakfast. Deliberate upon an appropriate penance for the all the cussing. Con Resident Domestic Goddess (aka Mom) into changing and laundering sheets after DH gets up.
55. Begin obsessively checking for leaks every hour on the hour....

The hard work of healing is not for the faint of heart. Or for those lacking a Junior High level sense of humour.

"becoming active"

Your turn: what physical or metaphorical steps do you need to take to slog through the poop in your life at the moment?

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.

Healing, Part One

A few years ago when we lived in Canada, after my whirlwind Ulcerative Colitis diagnosis and first surgery to remove my diseased colon, while I had a temporary stoma, an old acquaintance phoned me.  (I'll call him) John began the phone conversation tentatively, as we hadn't ever known each other all that well and he was very aware that I might think it odd for him to phone me up out of the blue.  "I heard about your diagnosis and surgery," he said.  "I've been diagnosed with colon cancer and am going through similar things as you, I think.  I was hoping we could talk...  I, um, do you ever have problems with controlling your bowels?"  "Oh, messing your pants in public?  Yeah, been there, done that," I responded, and the conversation took off.

Picking up the pieces

What meds are you on?  Do you have a moon face from the steroids?  What treatment options have you been given?  What can you eat?  Aren't NG tubes absolute hell?  The conversation culminated in him telling me about a recent event involving his van, a potty chair, and a drawn sidearm.

John had been very active as a Boy Scout leader, and had a large panel van with which he used to haul the camping equipment for his troop around.  After his diagnosis and partial colectomy, he placed a potty chair in the van and accustomed himself to only making short forays away from home whenever he could possibly help it.  "I know where every public toilet in a 10-mile-radius is," he told me proudly.  The potty chair was for when he absolutely couldn't make it to a public washroom, which did occasionally happen, as any IBD or colo-rectal cancer patient can relate to.  On this occasion, against his better judgement, John agreed to run an errand for a friend which required driving on the beltway around Washington D.C.  At rush hour.  With an even larger-than-normal backup due to an accident.

After close to an hour of fighting the urge, John realized he couldn't hold it anymore and wasn't going to be able to make it to the next exit.  He pulled his van off on the side of the road as far as he could, turned on his hazards, and made it to the potty chair just in the nick of time.  Unfortunately, this round of chemo-induced emergency poop lasted for a while, which is how John found himself surrounded by State Troopers demanding he open the back door of the van and come out slowly, with his hands up.  The officers had pulled over to investigate, knocked on the back door, and were surprised to hear John call out, "I'm in here, I'm going to the bathroom, I'll be out in a minute!"  They assumed this was some sort of clever ruse for illegal activity and ordered John to exit the van immediately, which, of course, he couldn't.

After a few back-and-forth verbal rounds John was fed up and yelled, "Listen!  The door is unlocked!  I promise I have cancer and am just taking a ****!  Come in if you want, but don't say I didn't warn you!!"  The back door slowly opened to reveal a shocked Trooper, gun drawn, taking in the sight of John on his potty chair.

And, of course, the officer was a woman.

John and I howled with laughter for several minutes; I had to bend over and hold my stomach while I gasped for breath.  "Thanks," he choked out finally.  "No one else will laugh with me about that."

Of course they wouldn't.  It was too painful of a story for those close to him to hear, too evident of the depths his life was currently occupying.  Too nasty for others, too much detail for some, too foreign for many, not appropriate to share in most social contexts.  But for someone else dealing with the same poop issues, for someone else who understood the pain, the shame, and the embarrassment -- for me who had already at that point developed a very interesting sense of humour as a method of coping -- well, it was HILARIOUS.  We both got off the phone feeling considerably better that day.

Not all the conversations with John were so uplifting, and he died a few months later.  Still in the throes of treatment and having just narrowly escaped death myself, it was a sobering event.

Another friend lost her husband this past week to cancer and Crohn's Disease.  (It was the cancer that killed him, but the Crohn's didn't help the treatment or prognosis.)  When I first saw her notice on Facebook about his downward turn in health I was surprised.  I hadn't been on FB in a few days and, as he had been fighting the cancer for 5 years, I guess I had grown accustomed to the reports of ups and downs and had forgotten that death could be imminent.  I never met Phil in person, but I came to know him a bit through letters and notes from Elizabeth, his wife/my friend and through his posts on the Caring Bridge site.  (www.caringbridge.org)  I also felt a sort of weird connection with him due to his struggles as a fellow IBD patient.

As I scanned the last few posts I found one where Phil mentions "taking constructive criticism" about the tone of his CB journal and attempting to be less cranky.  "WHAT??!?"  I thought.  If anybody has a right to be cranky, THIS guy does!  My inner cynic immediately began pontificating about how people just love to hear from noble sick people who are cheerful despite it all and do their best to remain upbeat.  We don't want to hear about the nasty, gross, depressing, chilling, CRANKY times.  Heck, we don't want to live them, either!  But we all do, at some time or another.  We all do.

"Be kind, for everyone is fighting a hard battle."  (Plato)

Lately on Facebook there have been a lot of "repost this status" notices about people with "invisible disease" or difficulties.  I don't repost them.  It's not that I disagree with the notices, necessarily, it's not that I disagree with the sentiment, it's just that I'm here.  I am visible.  People are visible.  And all of us, ALL of us, need a listening ear, a laugh, some support at one time or another.  Whether it's because of cancer or IBD or because we're just having a really bad day or we have a differently-abled child at home or because we're so depressed that we're barely able to pick up all the pieces (let alone put the puzzle together!), all of us need to be handled gently, to be respected, to share a laugh, to have someone listen to the nasty, gross, unpleasant parts.  We need someone to laugh at the potty-chair-in-the-van stories with us and we need someone to cry with us when it hurts.  And, honestly, you never know when it might be the last time you can offer that to someone.

Of course people need to be told to get it together sometimes.  Of course people wallow and need to take responsibility.  Of course people try hard and fail.  Of course sometimes it's all just too much and we can't hear any more.  And of course none of us can help everybody.  But we can all be a little quicker to listen, to at least sympathize if we can't empathize, to give the benefit of the doubt.  We can realize that maybe that criticism to Phil really was constructive; maybe Phil needed to hear it and the person saying it knew and loved him well.  We can realize that maybe we don't know the whole story behind everyone's actions; we can be quicker to encourage and laugh with rather than criticize and mock.

We can give thanks for our blessings and sit with those who don't feel like they have any, even if we don't say one word.

Because all of us need healing of one sort or another.

--For John and Phil, who don't need healing any longer as they rest in their Saviour's arms.

This and That

First, an update.  Many of you will remember my spotty, scarred old toaster from my last post (Ch-ch-ch-changes).  After the new toaster came to live with us, the old toaster took up residence on our dining room windowsill.  There it achieved the status normally accorded a fine piece of artwork; an impressionist-style sculpture, if you will.  Jasper asked me when we were getting rid of it and I shrugged.  What was the rush?

The truth is, I was having trouble letting go.  Yes, it was a ratty old thing, but it wasn't hurting anybody or taking up (too much) space.  It still worked when treated the right way.  It kind of reminded me of myself, actually.  Scarred up and somewhat spotty, but still capable of working, occasionally, when things are going well...

This symbolism was utterly lost on Jasper, who got tired of waiting for me to act and deposited the sad old thing here:

so long, toaster of mine

That point you see in the lower white portion of the bag on the right is the toaster.  Sigh.  Rest in Peace, beloved toaster.

Second, life has been crazy here -- hence no recent posts.  I'd feel really guilty about that, but I know my reading audience is predominately my mom (Hi, mom!) and a few friends, and I figure ya'll can deal with it.

Seriously, though, between the end of school and lousy weather and massive computer problems and several minor crises, I have not been getting very much done.  This, plus a slump into PTSD-inspired lack of motivation, has left me feeling more than a bit slow of late.  You know, like life is speeding by and I'm only catching glimpses of it as it passes, much too late to do anything about it.  Sort of like this:

me on a bad day last week

Other days it seemed I was in the center of the craziness, perhaps acting as the LSD-inspired director of my own comedic failure.  On these days I found myself thinking of the odd-pipe-instrument-playing Bunnies & Dolls Man we saw in Barcelona:

me on a manic day last week

Having the kids home from school added a whole new dimension to my normal craziness.  And, in tried-and-true motherhood fashion, there were several days where I blamed my insanity on them.

do we get a discount if the parents and/or children are already nuts?

Too make matters worse, my new &%$#@! excellent exercise routine, far from helping me feel better, was only serving to exhaust me quicker and earlier as each day went by.  The lowlights of this were the day I pitched a minor hissy-fit to the amusement of several neighbours as I dragged Bubba away from some other dog's poop which he was trying to eat -- do I not have enough poop in my life? -- and the day I was attempting to train him to run next to me while I bicycled.  That ended with me flying tush over head over handlebars.

the best-looking of the resultant bruises

But then the weekend came and I had a good workout.  A really good workout.  Small and puny compared to others of you, I'm sure, but for me it was stupendous.  I hit a new level, broke through a barrier with my aerobic training, made it all the way through my current weights routine without dying, and proceeded to have a very productive day.  Best of all, the next day's workout was just as good!  And I wasn't exhausted!  The fact that I didn't need a nap or want to go to bed at 7 p.m. for two days straight is, for me, phenomenal.  A not-so-minor miracle.

Is it the exercise beginning to pay off?  The prayers I've been uttering much more regularly again?  A lifting of the depression?  Grace being extended?

Probably all of that, and more.

And I needed all of it as Bubba blessed my day this morning by puking all over the living room rug just as we needed to get out the door for an appointment.

still pretty cute for being such a pain in the hiney

Oh well; here's to more of "this" and less of "that".

Some changes are coming to Feisty Broad; a re-vamp of the site will hopefully make it more user-friendly.  Actually, to heck with user-friendly.  I'm hoping it will make it more Broad-friendly!

Ch-ch-ch-changes

For some reason my mother and my husband's cousin think we need a new toaster.  I don't see it, personally.  Sure, there are a few superficial dings on the poor thing, but it still works!  Mostly.  You just have to jiggle the browning knob in the right direction and keep an eye on your bread in process -- don't flip for longer than 20 seconds -- and it's all fine.  Even Little Toot has the process mastered.  So why should we get a new one?

Our much-maligned toaster

This one has character, and history.  Not an incredibly long history, but history nonetheless.  It was purchased in haste about six days after arriving in the Netherlands, as Jasper ran through the store grabbing the absolute essentials.  This was two days after I was admitted to the hospital for emergency surgery (my fifth) and a day after finding out our belongings were being held hostage in Rotterdam due to a paperwork problem.  The many white spaces are from me scrubbing the blasted thing to rid it of the sticky feeling the plastic casing seems to attract; the deep gash is from my mother moving a hot pat too close to it during one of my hospital stays, and the flame-shaped mark is from one of the university students who stayed here while we were in Barcelona; she turned the gas up high in the burner next to the toaster.

Like I said, it has character.

But mostly I'm used to it.  I know its tricks, know how to treat it, know what to do with it.  It might be a pain, but it's MY pain and I can deal with it.  Who knows what a new, pretty, proper toaster might do with our bread?

Unfortunately, fate has dealt us a cruel blow.  K, the above-mentioned cousin, and her husband and beautiful son are moving from Belgium -- where they have lived a mere two hours away from us for the past three years -- back to Canada.  We're sad about them leaving, sure, but the real issue is that K has bequeathed her new, pretty, proper toaster on us.

What am I supposed to do with this?

It's not sticky, won't melt, and actually toasts bread.  What the heck am I supposed to do with it???

Change is hard, even when it is good, or even needed.  Some of us are better at rolling with the punches, taking what comes our way.  Others of us need time to adjust.  And sometimes, whether we want the change or not, whether we're easy-going or uptight, change is just downright hard.

Over the past couple of weeks I have been asked several times how I'm feeling, how the latest surgery turned out, what I'm able to eat now, what the next step is.  I made no secret going into this surgery that I was hoping and praying it would be my last, that I had had enough, that I was ready, willing, and prepared to do whatever need be afterward to be healthy and -- hopefully -- avoid further problems.  Now, on the other side, I have to live up to those words, to that desire, and it means some changes which I'm finding difficult.

The hardest outward change is the exercise.  I've always tried to exercise and be healthy.  At various times in my life I've run, walked, done aerobics, biked.  Most recently I've done Pilates and yoga, a lot of walking and biking, and basically trying to be more active.  Now, however, my internist has informed me that the exhaustion I have been increasingly fighting for the past few years is not "simply" due to illness and stress, although those are obviously major factors in the equation.  She thinks my body has aged too rapidly due to all the surgeries and medications over the past eight years.  In short, my body thinks it is 50 or so, while I, in actuality, just turned 40.  Of primary concern is my bone density, despite the amount of calcium I ingest.  The treatment?  Intensive weigh-training three times a week, in addition to my other exercise, a careful diet, maintenance meds, and so forth.

Yeah.  Um, weight-training.  This is so not how I want to spend a significant chunk of time three days a week.

The harder change, however, is the internal change.  Because, as bizarre as it may sound, I have gotten used to Sickness Mode and even Crisis Mode.  I know what to do, how to make myself rest, how to not plan too far ahead (and not from a healthier "be here now" perspective, either!).  I know how not to get too excited, how to be careful, how to monitor every tiny change in my appetite, sleep, output (that means poop, people), mood, hormones, emotions.  I know the ups and downs of PTSD intimately.  And as much as I want out of these modes, as much as I want my life back -- or, dare I hope for it? -- even a better life, this way of thinking about things, this way of life, has been "normal" for so long that I am not even sure I know how to change it, or if I can -- or if I even totally want to.

Of course I want to.  It's just that I've gotten used to the stickiness, gashes, and melted spots.   I'm used to it.  I know its tricks, know how to treat it, know what to do with it.  It might be a pain, but it's MY pain and I can deal with it.  Who knows what a different life might bring?

Wait, I got a bit confused there.  Was I talking about my health or my toaster?

Either way, change is happening.  And change is, in this case, not only wanted but needed.

So here's to change: may it bring health, may it reside in strength, may it not hurt too, too much, and may it not forget the lessons I have learned and benefits I have gained.  To change!

What internal barriers to needed change are you harboring?

Peculiar Intimacy

A few days ago I stood naked in a shower with a man I had met only 10 minutes before showing me how to properly use the sprayer to massage my abdominal region.  With his face inches from my belly button, he guided my hand in the appropriate circular motion and commented, "Feels very nice, doesn't it?"  Then he winked and gave me a big grin.  I could do nothing but agree; it did, indeed, feel very nice.

My husband was relieved when he heard about the encounter because it meant he wouldn't have to do it himself.

The man helping me, you see, was a nurse and the reason I needed help with the shower sprayer was to learn how to properly wash out my new surgical site, which was left open to heal rather than being stitched completely closed.  Rather like a drawstring bag pulled almost, but not quite, shut.  While the shower itself felt great, btw, weird doesn't begin to describe the physical sensation of hot water being sprayed into an open surgical wound onto a patch of one's small intestine.  It's like the sharpest pinprick and the softest touch you've ever experienced, happening simultaneously.

This being my ninth surgery in eight years it wasn't my first surgical wound or my first "this-should-be-really-uncomfortable-but-it's-not" moment.  A few weeks before, a very kind nurse knelt by my bed, leaned over my belly and gently blew excess powder away from my stoma -- the bit of small intestine cut open and sticking out through my abdominal wall to allow poop to be gathered in a bag rather than exiting in the typical mode.  Her mouth was mere centimeters from a poop volcano known to erupt violently at random moments, but her eyes showed only concern.  Her breath was cool, and soft.  I let out a sigh of relief and felt pain and fear recede.  It felt wonderful.  I wiggled my toes and stretched a little, delighting in that brief moment of release and freedom from ulcerated skin, adhesives, and plastic ostomy bags.

The Dutch have a great word for this pleasant sensual feeling: lekker.  Lekker can be translated as "yummy" and it is used to describe a variety of sensations.  It is not sexual in nature, although sex can be described as lekker.  So can a shower (lekker douchen) or a cup of coffee (lekker koffie) or the weather (lekker weer).  It's the best word I can think of to describe that first hot shower on a battered body two days after surgery, that comforting touch at a site of pain that lets one know it will all be okay in a bit.

Peculiar is the other word that comes to mind, because normally I don't allow strangers to see me naked or get close to orifices that may leak poop, let alone touch me in an exceedingly intimate manner.  I used to be really uptight about things like that; used to insist on curtains being closed in exam rooms and gowns being provided for medical tests.  I used to blush and bite my lip until it bled when medical students gathered around my bed, commanded me to pull my knees up to my chin, and poked around in my nether regions.  Not any more.  It's all too matter-of-course these days.  Now I just follow directions, close my eyes, think of England (!!!), and get on with business.

Except when one of those unexpected lekker moments happen; those I try to capture, to remember when I need something positive to think about.

Before I experienced major surgery I had spoken with people who described what it was like to be stretched out on the table, naked and cold and afraid.  One man told me that he remembered that Jesus had been like that on the cross, and it reminded him that he was not alone; it gave him some comfort.

I desperately tried to feel that myself the first time I was placed on that cold metal, but even though I pictured the crucifixion vividly in my mind, willing myself to believe that I was not alone in that awful place and position, all I felt was cold and terrified.  Then the anesthesiologist announced it was time to place the epidural.  Powerful hands gripped me, pulled me up, and turned me to the right while a calm voice explained how I needed to curve my back and place my head while the doctors worked.  I began to panic, a scream started to rise out of my stomach, and then strong arms enveloped me and held me close to a warm, clean-smelling, solid body.  The nurse held me like that for the entire procedure, softly telling me to breathe, breathe, in-out, in-out.  The panic left and I felt like a baby in someone's arms.

It was lekker.

Have you ever had an unexpected moment of lekker-ness in a peculiar place?