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!)

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?

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.

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!

Back to Life...

...back to reality.  Ah, where would we be without bad 80's lyrics?

I'm just two days home from a surprise whirlwind trip to Barcelona -- my Mother's Day gift this year, combined with a late 40th birthday and postponed 15th anniversary, plus a little "Thank God all the surgeries are over....  We hope!"  It was glorious.

Overlooking Barcelona from Parc Guell

 Blessed, yes I am.  With two fabulous university students who cared for Boo, Little Toot, & Bubba, for friends who helped out with random dog and childcare, for a DH who decided enough was enough and we needed some time away.  Who realizes that it is important to mark the Big Things; and when important birthday and anniversary celebrations (for instance) have to be postponed due to a seemingly unending string of illness and surgeries, understands that sometimes the Big Things are stuff like waking up in the morning, breathing, laughing, walking.

Today I'm realizing that all over again.  Because the "reality" part of life is sinking in again: weeds in the garden, childhood meltdowns, an ever-growing to do list, glue that will NEVER come out of the %$@! bottle properly especially when I really need to get these stupid wonderful birthday party invitations ready for the morning.

I miss the giant fish heads.  At least I knew where I stood with them.  (Away.  I definitely stood away from them.)

Fish heads, fish heads; roly-poly fish heads...

Pitiful, isn't it?  Such trivial, every day things.  But when other, harder things are piled on top of them, even these little things grow to monster proportions and threaten to become overwhelming.  Things like someone dear to me undergoing serious medical testing.  Things like depression, a sobbing child, memory loss, a niggling pain a little too close to the last surgical scar for comfort.  Right in the middle of what needed to be a pretty busy day, I shut down.  I sat down and just... sat.  I felt overwhelmed, I was anxious, I berated myself for being lazy, and then I realized the truth of the matter.  I'm afraid.

I'm afraid I won't be able to "handle it", to keep up without being sick.  I'm afraid things that I've lost (like chunks of memory) won't come back and that some things that I've gained (like adhesions) won't go away.  I'm worried I won't be able to keep up the new physio & exercise routine the doctors have set for me.  (Seriously, people, do I look like someone who enjoys lifting weights?)  I'm afraid I just won't be able to do "it".  Whatever "it" is.

And then Bubba sat on my feet, demanding a walk.  And I remembered a little card given to me by a nun many, many years ago when I was having a different kind of fear and worry attack.  The card read, "Courage is fear which has said its prayers."  So I said a little prayer, had a little lunch, took a little walk, ate a little chocolate, and looked at my toes.  My pretty Barcelona-pedicured toes.  They make me smile.

Pretty piggies

Life might indeed be pain, Princess, but life is also support and love and smiling.  Life is having a good cry and a good friend to hand you tissues.  Life is tough, but there are ways to soften it.  And I can either sit around on my ass and feel sorry for myself and let everything crowd in, or I can get up and fight back.  I choose to fight back.  Through prayers, through exercise (grumble though I might!), through helping someone else with their lousy day, through hugging my kids.

As long as it doesn't ruin my pedicure.  Because I quite like my pretty toes.

How do you fight back in the midst of a stinky day?