Blogging One Photo at a Time

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I often take photos with the idea of blogging a thought or experience. Seems I’ve been doing this for a couple of years and not posting anything here. Maybe life is just like that for me. I go with fits and starts. I’m actually a stellar starter.

Sometimes I’ve been completely immersed in the support of people who are facing ostomy surgery and don’t know what to expect. I’ve enjoyed being a healthy active inspiration to those who are sick. I was once very fearful not knowing what life would be like living with an ostomy and thought my life would be changed forever.

My life has been forever altered now that I have an ileostomy,  but along with the disruptive reminders of my limitations have been unexpected moments of tenderness and the powerful strength in resilience.

I’ve had countless quiet pensive times when I reflected on the decision to have the reversal of my JPouch and have a permanent ileostomy. All I can tell you is that the freedom from the daily agony and fear of the toilet was the best decision I made. It’s also one that I feel very protective over when people ask me innocent questions like, “did you try probiotics?” or some well intended inquiry into what could have been done.

Each time I’m given suggestions about what I could do to improve my health,  it tosses me into a defensive emotional place. Sometimes I feel sorry for myself. Sometimes I feel very empowered with how far I’ve come. Sometimes I’d rather not think about it at all.

When I do share my medical condition with people, I’m always delighted when they tell me they had no idea. I’m also routinely discouraged by people thinking they can help improve my colon health when I don’t have one. A colon. It’s been completely removed. Anyway – this post isn’t about frustration, it’s more about reflection after two years of no writing. I’ve documented much of my life in photos and routinely snap shots of things that represent emotion.

It’s tough to remember misery in hindsight. Especially when it’s sprinkled with fantastic days of wellness. Anyone with a chronic illness that has times of remission can relate to this. People with an illness that doesn’t show on the outside also knows how discouraging it is to be unwell and misunderstood.

So I’m gathering my photos and putting them into a writing challenge. To get back to posting regularly, I’ve decided the photos will be my topics. Typically they evoke a feeling or memory – each one of these does. It’s organic and free flowing but in somewhat chronological order from the last time I posted here.

Roses were Day 1 that I wrote about yesterday. I wonder if it will take me another two years to write about each of these photos. I’m constantly inspired and routinely struggling.

With gratitude for good days and a healthy sense of reality about the future, I will begin. Here’s the list so far:

  1. Roses – CHECK!
  2. I Miss Vegetables
  3. Fetal Position
  4. Counting
  5. Painting and the Art of Healing
  6. Did You Do Your Best Today?
  7. Human Body Coloring Book
  8. Go Big or Go Home
  9. Dock Jump
  10. Does This Pie Scare You?
  11. Meditation Malas and Healing Beads
  12. Iced Coffee
  13. Hello Spring
  14. The K Line Train and How to Keep Moving
  15. My Mum is My Strength
  16. Are You Feeling Trapped?
  17. Pain Chart
  18. IV Nurses and Other Bedside Visions
  19. The View from my Hospital Bed
  20. Hospital 2.0
  21. What’s on Your Shelf?
  22. Uranus Gas
  23. Uncertain Selfie
  24. Rest and Recovery
  25. Reflections From My Desk
  26. Wonderwoman Nail Polish and Power Stances
  27. Mother Mary in My Accessories Drawer
  28. Pebble Path to Cross
  29. From Soup to the ER
  30. Hearst out the Passenger Window
  31. Ice Cream with No Regrets
  32. How do you Measure Up?
  33. Beets at the Picnic
  34. Bleak Chair at Dusk
  35. Brick Walls
  36. My Hubs and Humor
  37. Defeated; a Self Portrait
  38. Grey Days
  39. Be Nice
  40. It’s Perfectly OK
  41. Showing Up
  42. WonderWoman Mother’s Day
  43. Sister Stash
  44. Room Service
  45. Stand Together
  46. Staying Connected with Snapchat
  47. Painting Even When You’re No Good
  48. Life & Love in Handmade Quilts
  49. Golf and WHITE SHORTS
  50. White Shorts 2.0!
  51. Swimming – Even Diving!
  52. White Pants!
  53. Collections and Reflections
  54. Tray of Treasures
  55. Swim Skirts and Bikinis Tops
  56. Milkshakes
  57. Heart to Heart
  58. Anniversary and the Fitted Dress
  59. Dog Days and Daughters
  60. Home is Where We Gather
  61. Saturday Dog Sketching
  62. Neighborhood Craft Day Q&A
  63. Road Trip Packing List
  64. Backup Wardrobe
  65. When in Doubt – Double Up
  66. Weekend in Mexico

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When I was a child I hated station wagons. Wood panelled wagons were the worst. I loved road trips and all the endless images passing along the highways but for some reason I had an aversion to station wagons.

Road trips on the other hand were wonderful and full of possibility. Seemed we could go anywhere and there was always an adventure ahead.

Who would have imagined that some day I would appreciate the station wagon and develop a fear of road trips. Car rides, trips to the store. Anything that took me from the comfort of knowing there was a bathroom nearby. The idea that I would have an accident, ask the driver to stop and stop again. And again.

I find myself having difficulty writing a lot these days. Partly because I was sick last week and became very dehydrated. Maybe that’s why I’m back here tonight actually. Feeling grateful for energy and a connection here to others who understand why a trip in the car is something to be feared when you suffer from bowel disease.

I don’t fear road trips anymore and I don’t hate station wagons. In fact I shot this one out the window on a long drive to Las Vegas from Phoenix. The vibrant orange wagon on the open road in the desert was a fantastic contrast.

So was the freedom I felt with my ostomy.

Karen

Rocking it with an Ostomy

I found a blogger I can relate to, who’s energy and writing has inspired me to get back to the creativity I NEED in my life.

Like me, Heidi Skiba  has a permanent ileostomy after suffering from ulcerative colitis. She openly shares her challenges and how much she has accomplished since her surgery in her blog Ostomy Outdoors.

You can watch her inspiring introduction here and see all that is possible with or without an ostomy. In Heidi’s own words, “My ostomy is one part of a much bigger life”

Here are a few excerpts that caught my attention:

“One of the things I longed to do most after surgery was to go on a climbing road trip again. I wanted to remember what it felt like to climb all day, cook up dinner at camp, talk about the day’s adventures over a crackling campfire, and then get up to do it all again the next day. Last summer, I wasn’t quite strong enough to rock climb. After training and gaining strength over the winter, my body finally felt ready to spend day after day doing climbing routes.” Click to continue

I’m eating up her blog, reading more about Heidi’s exploration and art. Here’s another bit I love:

“I soaked up the inspiration each day and couldn’t wait to get to camp in the evening to spend more time practicing what I had learned. There, I took out my journal and watercolors and filled more pages with writings and drawings of my chickadee visitor, the boulders near my tent, and even my marshmallow-roasting campsite neighbors. As the sun dipped behind the mountains and my hands got chilly, I reluctantly put away my sketchbook. It had been far too long since I  had a chance to spend this much time drawing, and I didn’t want to stop.” Click to Continue

Something Heidi wrote really resonated with me. It sums up how I feel about my life with an ostomy:

“Others say that they refuse to let their ostomy define them. For me, my ostomy has absolutely been a defining force in my life. Going through the experience has made me a stronger, more appreciative person and has given me purpose.  I love showing what is possible after surgery and helping to give hope to those who are facing or recovering from ostomy surgery. It is hard to imagine my life without this new-found focus. Helping others through my Ostomy Outdoors blog is one of the most rewarding things I do.” Click to Continue

It’s no surprise that Heidi was awarded the Health Activist Best Kept Secret Award by WEGO Health

Nice work Heidi!

Karen

How To Wear This Season’s Maxi Skirt

Test driving the Trend: Maxi Skirts

How to Wear Maxi Skirts

My typical fall wardrobe: Leggings, Huge Sweater and bright handbag held by bent elbow as a shield for my ostomy. Life is a battle, and fashionable gear is essential. More soon on the latest doctor bags and CAPES!!! Today, let’s talk about the Maxi Skirt. I have worn my black maxi dress down to a house dress then it was reduced to a nighty but I can’t give it up. I simply love the way it covers all and enjoy lifting the hem a bit when I descent the stairs.

I found my Matty M Black Maxi Skirt while scrounging at Nordstrom Rack ($88 down to $23.98!), but they are everywhere. Mine has a fold over waist line perfect for extra coverage over the pouch. Then I found this nifty video to show me how to wear it (the price range is the typical “Whaaaa? Who would ever pay that!?!?” but focus on the style suggestions. I definitely have a slew of floppy flowy tops chosen to craftily cover my ostomy. Swishy sheer tops and floppy sweaters should be dandy with my new Maxi Skirt.

Read on about Maxi Dresses and click to watch the slide show courtesy of Refinery 29

View Slideshow

The first step to wearing a maxi skirt is to pump yourself up—you can wear them (yes, even you shorties!), and they look awesome on you! Feeling better? Great. Now, comes the hard part—just how do you wear a maxi skirt? With the wrong blouse, shirt, or top, a maxi skirt can transform you into an Amish prairie-woman schoolteacher. But with the right styling tips, you can look effortlessly glamorous in this season’s hottest separate. So, we present six tips on how to wear maxi skirts. Here’s how to do it. By Connie Wang

Mercy’s video

For Positive Living shows a short film by Tim Bedingfield about artist Heidi Yssennagger’s work creating “Mercy” for OstomyAid.

I was moved by the quiet grace of this art project, along with the story about woman suffering globally. Using appliance materials, an artist with a stoma has created a piece in response to her research about women with stomas in Africa. Creativity has helped me to cope and this video shows how we can do more for one another. Like with any illness or medical setback, people relate to the personal and emotional struggles unique to our challenge. Helping others has always made me feel a little better. Let’s see what we can do together. Start by watching Mercy\’s video.

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.

Open Minded Teens – Class of 2010

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This week I was a guest speaker during my daughter’s presentation on Crohn’s and Colitis in her High School Health Class. I’ve shared my story with many people over the years, but never before a group that was not directly affected by Inflammatory Bowel Disease (IBD). Talking with people who relate to the shame and fear is one thing, but sharing this deeply personal story to my daughters’ peers was an entirely different experience. It was another first, another milestone, and another moment of knowing I have this crazy ileostomy for a reason.

When I faced the group the reality of how long IBD has affected my life was intense. I was just a little older than them when I started to feel the life altering affects of Ulcerative Colitis. I will be honest, going in I didn’t know how a group of teenagers would respond to my condition. As lead by their open minded teacher, they listened respectfully and I went for it and shared it all. I pulled out a pouch and showed them how the appliance works (with my clothes on of course) and told them stories of misery and isolation. I spared no details and allowed them to ask me questions. I spoke of my confidence and belief that I can do anything. I also shared how some people I try to support are so disgusted at their own body changes, that they see me in an equally dark light.

I am also very proud that both my teenagers were comfortable with me exposing such a private part of our life. Family is affected profoundly by illness and my girls know it first hand. We’ve had plenty of emergencies because of medical complications and I’ve become dehydrated so many times that a bottle of Gatorade sets panic in the eyes of my girls – it means a trip to the ER for IV fluids is near. Seeing a parent weak is nothing a child should ever face, but for my girls, they have moved through it with privacy and poise.

The swing side of living through fearful situations is the story of resilience and grace. When you have a bowel disease, feeling confident doesn’t come easily and depression and isolation are common. My girls have at times been burdened with a bedridden mother and one who has said goodbye many times for mysterious and scary visits to the hospital. My daughters are lovely and in spite of all they have experienced, they are strong. They live with dignity despite the strangeness of having a Mum without a colon and all the “baggage”, stigmas and bad jokes that comes with it.

This generation of young adults that are open to talking about anything. I thank them for inviting me in and to their teacher for helping create awareness. I left the visit, feeling inspired to do more.

To the Class of 2010 – Thanks for having so much class.

Karen

Mood Lifters

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Feeling down today? Here are some tips that may help:

Make some strides: Walking is a mood lifter and a change of scenery is enough of a shift to take your mind off heavier issues. Plus it’s good for you and can help work off some of that Halloween candy.
 
Hit the sack earlier: Get some shut eye. Everyone is better off. I know I head to cranky-cranksville and everything seems tougher when I’m tired. Pillow lumpy? Room stuffy? Fresh air and a new pillow do wonders for a good night’s sleep.
 
Clean up your act: De-clutter the spaces around you. Piles of paper and life’s bits and pieces are reminders of all you need to do. Keep a notepad handy to get thoughts out of your head and consolidate your to-do lists. Clear the mind!

Tune in to some music to elevate your mood. It’s amazing how my mind wanders to softer thoughts as music plays in the background. Everything is better with music in my opinion. Songs send me to memories or allow me to drift away from the chores at hand. Linger in the lyrics and enjoy.
 
In scent-ify your home. With all the aromatherapy options out there, anyone can find a scent that relaxes, energizes or improves the surroundings. Lavender is my favorite for relaxation, and lemony fragrances boost my energy. Vanilla is a wonderful scent too. Create a spa scented feeling in your home with diffusers or candles.

First Blog!

Welcome to mykarekit Blog! This blog supports myKareKit.com offering Ostomy Lifestyle Solutions. Post your challenges as comments here and our team will research and publish the solutions at myKareKit.com. By sharing your ostomy lifestyle challenges, you will help other people with ostomies move forward to a limitless life!