What Not to do list – no longer applies

Stop

From the archives of my previous thoughts. This was my “What Not to Do” list when I approached my ostomy surgery. One by one these things are being checked off my New “To Do” List (disclaimer: CHECK WITH YOUR DOCTOR FIRST) And just because I am willing to do them, doesn’t mean you will. I just want to offer up my transition for your reflection:

  • Don’t look at the bag
  • Don’t take off the bandage
  • Don’t wear belts anymore
  • Don’t be naked
  • Don’t enjoy sex
  • Don’t lay on your stomach
  • Don’t wear a bathing suit
  • Don’t go boating
  • Don’t go camping
  • Don’t tell anyone
  • Don’t feel normal anymore

Do I dare share?

dipping my toe in the video waters…

I did my first test video in my studio and made myself laugh. Humor has helped me through so much of my journey living with an ostomy and I couldn’t help but laugh at myself here too. Not sure I can take myself seriously enough to do this, but I think it’s nice to get to know one another a bit so here’s the test.

Check out my video here

How NOT to eat a carrot and other blockages

Blockage bits:

In Brooklyn railway apartment on my sister’s floor after Korean BBQ

Peanut butter sandwich and fresh juicy peach in a canoe in a lake in the Colorado Rockies

Endless mini carrots dipped in ranch, nodding and laughing listening to my wee daughters tell me stories of their day at elementary school.

Cheese at a wedding. Lots and lots of cheese until when it finally came out, I had a play dough like fun factory of a condensed cheese stick protruding from my sundress.

Turnups. turns out they don’t. Beets don’t beet it either, they like to stick around for a while

Zuccini soup. Fully cooked but those skins entwined and expanded until nothing was moving

Olives…how many? IDK as the kids would say, IDK. I do know, however, that I can chew 2 one hundred times each and chase with something oily and I’m golden.

Did you know that pushing fluids can actually expand a blockage? I’ll link to some real medical stats on this in a follow up blog, but with my bit of scar tissue bound intestine, I have more trouble with raw foods.

I’ve had a difference of opinion on my veggie intake. My body craves fresh vegetables and I love the feeling of the crunch. But I simply have to be very very careful since things are all twisted and random in there now and there’s no telling when the hose is gonna kink.

Another blockage trip to the hospital with Momo and Lilly

How often do I think about my bowel bag?

How often do I think about my bowel bag?

Enough to write about it in journals for 12 years. And another 15 before that, documenting my illness, disregard of my illness, depression and exhilaration. Adventures and stories. Research and library visits (before the internet) had me reading up on all the things I’d be able to do when I got my bowel bag but I found all of that hard to believe. I didn’t find any of it funny either. Couldn’t joke about feces exiting out my belly. I’m mean how ridiculous and upsetting. And how could I ever feel safe and secure in any aspect of my life. Well, the journey is in the journal. And now, I think, I’ll give it a real go and blog some of my moments. Dig a little deeper into some more private places. I’m going to take more risks. This pile of journals is only a sampling of my books of pain and prose, joy and remembrance. Attempts to document my life in a way that would be honest. Sometimes so scary I’d start writing in one journal only to switch halfway through a thought or story to another book and not date anything. Those were years where my trust was broken. It’s all here though, in these piles. Bits and drips of my thoughts, then sudden outpourings of emotion. Not always about my body changes and medical moments, but about the feelings and fear.  The change, the resurfacing to a new normal. Me. Mine. mykarekit. The whole kit and kaboodle if you will.

So read on if you feel like it and I hope it brings you some connection you might need. Otherwise, maybe my photographs will bring a sense of whimsy or reflection. We’ll see because 2011 is going to be the year of the blog for me. I’m ready. No time like today.

What should I call my ramblings that have me typing well past midnight. Did you hear about the midnight rambler? Everybody’s got to go. I just go all the time..anytime…unannounced.

Random Pages from the Ostomy Journal

Notes from the Hospital Bed

I’m your sister’s neighbor’s aunt

“What kind of bag would you like?” Got no choice.

Should I take questions? That always works well in public talks I’ve given. Far more interesting to tell you what you want to know and answer your concerns from my perspective. It’s refreshing. Drop me a line on my About Me Page

Love & Toast


When I first saw my daughter pull this pleasing tube out of her purse, I was tickled. Tickled pink.

Then I read the name: Love & Toast and was intrigued and delighted. My motto has always been that “tea makes everything better” and toast is the first thing you eat when you are on the mend. It’s all “love and toast” isn’t it?

It reminded me of when my friend Ann came over once after a surgery with some sweet smelling creams and cozy socks. At first I thought she was going to give me a food massage but she saw my startled reaction and told me to relax – she didn’t want to touch my feet. She just wanted me to smell and feel good. I always do when I see her.

I’ve been meaning to find the Love & Toast hand cream for a while because I just want to give it to everyone! When I found it, I was even more pleased with the fun website and the theme and mission.

Margot Elena of Love and Toast has a lovely Philosophy:

Pretty is as Pretty Does. With every Love & Toast purchase you will not only look good, but you are doing good. A portion of every Love & Toast sales goes directly to Regional Affiliates of Girls Inc., Inspiring young girls to be Smart, strong and bold.
They have an excellent and whimsical selection of greeting cards too. Wouldn’t you be delighted to have some pleasing hand cream and get one of these cards when you were in the hospital?

This one shares my other motto: Anything is possible.

Today I will sip tea

Today I will start it – begin.

Write and remember

Create

Dabble

Sip tea

Today I will think of you

Today I will put away my vintage Santa mugs,

Find new inspiration for my walls.

Photographs and sketches by my daughters.

Today I will be thankful

I am in a Happy New Year

Bring your mum to school day – ileostomy show and tell


Raising two very active girls while having an ostomy has been challenging – for them, and for me. There were times when it was discouraging and disruptive and sometimes simply irritating for all of us. Despite the many interruptions in our lives over the years, I have to say that my daughters have been supportive beyond belief. I’ve been sick since before they were born, and when they were young and curious, many of the things I was going through were overwhelming and scary. They didn’t understand why I was in the hospital, or why I couldn’t get out of bed or leave the house. They just knew how it affected their lives, and that the disease was forcing us all to make sacrifices.

There are plenty of proud moments as parents, but yesterday was extra special. My daughter Lissy did a presentation in her health class educating her high school classmates about Crohn’s Disease and Ulcerative Colitis. The presentation was comprehensive and then she introduced me to share my personal experiences from when I was suffering with Ulcerative Colitis, and now, my lifestyle issues with a permanent ileostomy.

I shared my story of how I got sick when I was about their age and how it affected my personal life. I answered questions and shared personal stories, then did a little demo on how the adhesive and pouch work in an impromptu “show and tell” session. I showed them the 2008 Colondar that were the first images I ever saw of a healthy looking person with an ostomy. I told them how I am constantly “checking my package” to be sure my seal is secure and how every moment, it is on my mind, regardless of how well I am coping. I told them that their high school hallways would have been terrifying for me when I first got my ostomy, all elbows and fast swinging backpacks, shouldering past one another between classes. In the beginning you think someone’s going to knock it off your body.

As I looked at the class, I remembered being close to their age when I first got sick, when I imagined I could do anything, believing that any dream I had, with effort, I could attain. There have been tremendous setbacks in my life with the pitfalls of health challenges, but I am still as optimistic as ever that my life is limitless. It’s been a long road, but maintaining a sense of humor and positive attitude has been a big part of my success.

The class showed compassion and interest and I really enjoyed being invited in as a speaker.  I was one in a series of other guest speakers that Ms. Ewing brings to share personal stories, some to go with projects, others to expose the class to challenges they wouldn’t otherwise learn about.

This group of students was totally respectful, and for the end of the day, very attentive. I commend Ms. Ewing for creating awareness and these young people will no doubt learn more about life in that health class than anywhere. Some of the faces I recognized from years of living in this community and it was wonderful to see them smiling back at me. I’m uncertain of the challenges that these students face in their lives but I bet if I had individual discussions with them, I would learn a lot. Being a teenager tests your character and all of the skills you need to excel post secondary. Empathy and open minded listening are crucial ones and this class showed me both.

Thanks for listening with grace Class of 2011 (and 2012 :)) It was an honor to share my story with you.

Flowy and Femine Swingy Sweaters

 

I love Anthropologie so much that I use their inspiring catalog as a mouse pad. I dream of swooshing through high grass fields with elegant pendants and long boots and lace trimmed coats. Comfort, coziness and coverage are all I care about as the leaves change and the air feels brisk.

Wearing flowy fabrics and stretchy leggings, along with some barn boots combines confidence with the elegance I prefer to  sweats. My fall “uniform” is a simple pair of black legging, some good old, all-terrain boots and swingy sweaters to feel cozy and feminine. I can toss over a shoulder messenger bag to carry my ostomy supplies and a camera, and off I go!

START WITH THIS:

OR THIS:
Yank on  THESE:
TOP WITH THIS:

OR THIS:

PULL ON THESE:

Frye Heath Riding Boot

OR THESE:

TOSS THIS OVER YOUR SHOULDER:

OR THIS:

AND OFF YOU GO! Ready for anything!

What’s your uniform? I’d love to hear from you!

I’m bored of this ostomy game…

Do you find having to change your ostomy appliance an emotional hurdle? If you don’t, I’d love to hear from you. No matter how many years I’ve managed my ostomy, I find the process of refreshing my adhesives and pouch to be draining. Yikes, no pun intended. I do, I just don’t like it, put it off until I’m tired, or I’ve had coffee or I just want to go to bed but I can FEEL it MUST be changed. Thoughts on that? I try to do morning management but the early part of my day is packed already, let alone stopping to stare at the part of my body that’s always on my mind anyway…

Stall Walls

Bathroom stall walls. Stared at a lot of them over the years. This image was from the walls of a stall that was decoupaged with Asian newspapers and I found it wonderfully appealing. For people who have suffered bowel disease, any little distraction is appreciated whilst spending so much time in the loo. I took a picture and thought about all the hours I spent in stalls before I had my ostomy. Terrible times. I remember laying on my side on the floor in the restroom during a dinner out, trying to allow some relief from gas pains. Each time someone would enter, I would jump up, only to lay prone again in agony. When your colon is inflamed, ulcerated and bleeding, even excess gas can be terrible. It’s all miserable and tough to manage. These pleasing distractions would have helped me back then, their faces are pleasing and empathetic.