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

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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

Best Swimwear for Ostomy

Look no further. I’m obsessed. Trust me, I’ve searched. This one makes you feel like you actually aren’t hiding anything. The plaited detail is generous and the back is low and sexy. You may have had to say goodbye to the two piece after surgery, but you’ll be back in the swim with this one. It’s spendy but worth the investment if you have a holiday or summer poolside plans ahead.

True to size. Double check the sizing since it’s from Australia. See you at the beach!

Details and images courtesy of Trixan Body.

More about this fabulous swimsuit:

  • A real summer shimmer that will give you that longed-for beach glow, the Shimmer story is available in luscious fruity colours.
  • The Shimmer Maillot with plaited detail offers feminine styling and a stunning low back.It is one of Trixan Body’s favourites from this Seafolly range.
  • Beautifully made, the design features a plait or braid detail down the length of the body and plaited straps.
  • Cups can be removed depending on the look you’re after and cup size.
  • Straps are convertible which can be worn as a halter or as a cross back and then tied in a bow.
  • Simply gorgeous.
  • Fabric: 80% nylon and 20% elastane.
    Nifty video showing the suit on a model walking down the runway. Let me know what you think.

I can do anything (with an ostomy)!

Traveling in England (with an ostomy!) and thinking I’m really funny…

So here we are screaming through January and at the beginning of week #3 already! I want to blog more this year and focus on real life tips and less about anecdotal stories (and random postings as demonstrated with photo above). I’ll likely do a combination of both since I tend to write without too much forethought and enjoy sharing fun photos. When I think about trying to deliver informative content, I lose my momentum. I want to be a resource but also address the everyday kinds of questions I get asked all the time. I also want to be an example of keeping it light. All this is oh so serious most of the time as it is. It’s better for me just to start writing and see what comes. Life continues to toss challenges at me and I’ll continue to share them.

My goal is to write once a week and I think I can do that. I also came across all of my years of journals and my daughter challenged me to write a book about living with an ostomy. The idea of a book is daunting but I do like to tell a good story and I have plenty of funny, sad and challenging ones to share.

I’m starting the year healthy and feeling powerful after shoveling snow! Each time I exert myself in ways that stretch and challenge my abdominal muscles, I have a little concern in the back of my head. That, and a little voice saying, “awe yeah, that’s me with my ostomy – shoveling snow – I can do anything!” It’s become a joke with my daughters that I can do anything even though I have an ostomy. You see, I’ve been showing my girls their whole lives that I can do anything with an ostomy. It’s now taken on a new meaning, as if the ostomy itself has given me the power to do anything. Rather than being able to do things even though I have an ostomy, they joke that I can do all these things because of it. It’s become funnier as the years go by. Today I hauled boxes around as I get ready to move and I could hear my daughter’s voice in my head, “you see Mum, you can even lift heavy boxes with an ostomy!”

I have lots of packing to do and I’ll pull out some journals to share some “Notes From the Hospital Bed”. Stay tuned!

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?

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

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!

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.

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…