Blogging One Photo at a Time

Studio

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

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

Isolation and NPO…not such a welcome sign

This is the not so welcome sign on my hospital door the week of Thanksgiving…

No sooner did I finish the previous blog post about being in the hospital during holidays did I start to feel a little “off”. I landed in the hospital after collapsing with sudden dehydration and the need for several bags of IV fluid and total isolation for being contagious. Wouldn’t you know I’d write about being in the hospital on holidays and end up there until Thanksgiving Day. I got sick on Monday and my blood pressure dropped so suddenly that I couldn’t sit upright without falling to the floor. My doctor called ahead to arrange for me to be admitted because I’ve had this kind of depletion before. It definitely sets you back emotionally but I felt safe and cared for being *NPO and on anti-nausea meds while I rested. My first “full liquid” meal was on Thursday. I was discharged at 4:30pm just in time to be hungry enough for dinner and before the deli closed on the way home. We were able to stop for some take home turkey and mashed potatoes.

*(NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons. It is a Latin phrase which translates as “nothing through the mouth”.

It got me wondering…what food do you crave when you are NPO?

Let go a little


I took the leap a few summers ago off a dock I jumped from as a teenager. Having an ostomy makes you nervous of the adhesive coming off – let alone the impact of water! After years of avoiding doing the things I used to love and becoming far more cautious than necessary, I slowly started to let go and take chances. This dock jump is an annual summer tradition at the end of a long, hot day at the island fair. It was thrilling to take the jump, and my parents and daughters were proud of me. That felt wonderful too. Being a strong role model for my daughters is important to me so pushing past my fear is something I have to do.

Let go a little. Be prepared for anything of course – but as life proves over and over again, it’s not usually the things we fear that toss us – it’s the unexpected. And this day was unexpectedly exhilarating!

The road to resilience

I recently lost a very dear friend to brain cancer. I watched her health deteriorate, she maintained the strength to fight. Because of my own experience with my body letting me down, I initially was able to identify with her discouraging moments. After a while though, death approached and although I was not able to know what she was feeling, I was there to be with her. I promised to meet her where she was and be honest. I’ve been able to be resilient with my own physical challenges, but losing a loved one is taking me to new lows and reminding me I have to move forward. I found a helpful article that many of you might identify with as you face your low days and disappointments. When we feel depressed, it’s important to feel those feelings and be true to the down times. We also must try to be resilient.

What is resilience?

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats, or even significant sources of stress — such as family and relationship problems, serious health problems, or workplace and financial stressors. It means “bouncing back” from difficult experiences.

Here is an interesting read on resilience from the American Psychological Association:

From The Road to Resilience: Factors in Resilience

A combination of factors contributes to resilience. Many studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models, and offer encouragement and reassurance help bolster a person’s resilience.

Several additional factors are associated with resilience, including:

  • The capacity to make realistic plans and take steps to carry them out
  • A positive view of yourself and confidence in your strengths and abilities
  • Skills in communication and problem solving
  • The capacity to manage strong feelings and impulses

All of these are factors that people can develop in themselves.

Strategies For Building Resilience

Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies.

Some variation may reflect cultural differences. A person’s culture might have an impact on how he or she communicates feelings and deals with adversity — for example, whether and how a person connects with significant others, including extended family members and community resources. With growing cultural diversity, the public has greater access to a number of different approaches to building resilience.

Some or many of the ways to build resilience in the following pages may be appropriate to consider in developing your personal strategy. Read full article here

Summer Self Portrait

Spent the day with Lilly shooting in the sun…

Then into the studio for some polaroid fun

Blissfully,

aimlessly,

Summer has begun

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!