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

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.

A new door opens

Today I opened a new door when I spoke before a group of nursing students about living with an ostomy.  Because of my fondness for those in health care, I immediately felt a sense of safety and comfort.  After I shared my story, I answered questions ranging from diet to intimacy,  to my wardrobe and outlook on life. I felt their compassion and acceptance, and was eager to help them understand  how important their role is for the ostomy patient.

Nurses are the first to touch the lives of people post surgery and when the doors of your hospital room close, the relationship with your nurse can feel like a lifeline. It can be a very emotional time viewing your adjusted body, and in those first few days, a difficult and lonely place. You share intimately with the nurse who cares for your stoma, checks your output  and tends to your incision. When you lay exposed and vulnerable, the caring hands of your nurse and confident touch can have a profound impact.

Open Minded Teens – Class of 2010

IMG_8526

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

Ask for help

img_5283

Fall is here in the Northwest and as my winter pots got re-potted by some loving friends recently, I was reminded of all of the gifts in my life. It would have been easy for me to wallow in depression, I had plenty to feel low about after spending 6 days in the hospital for having a serious obstruction. After having an ostomy for so long, I feel pretty sure I know what to eat, but now and then, I’ll get thrown for a loop when my remaining intestine get kinked and refuse to allow passage. Rest, pain meds and lots of visits from my friends and family and I am home on the mend.

Ask For Help if you need it. The people in your life will feel helpless but want to reach out to nurture you. Stay close to home and allow them to tend to some chores to beautify your surroundings. After mentioning my dying summer porch plants, my dear friends arrived with warm drinks to sip as I bundled up on my deck and they winterized my plants for fall. Now when I open my front door I have a fresh outlook, more than just the flowers in my pots.

Everything is going to be all WRITE

img_6467

Allowing my feelings to flow through my pen has always been my therapy. My hospital journals often have unfinished sentences as I drifted off to sleep under the blanket of pain meds. But always, they are a place where I can spill unfiltered and later reflect when I am well. During a therapeutic weekend of de-cluttering, I pulled out my journal pile and re-read some of my hospital prose. For those of you who are still in that place, it may help to know that I am not there anymore, but I do understand it deeply. Here is one I wrote while under the recovery sheets.

Whole

There’s a hole there that could swallow me up if I let it.

  If I looked

I am not whole anymore,

  my energy leaks like a cold sweep of wind.

I am exposed there,

  no one I can express this to but these pages.

Pen dips into my rages and sooths my limitless ache.

Not arms and legs gone, but part of myself.

Forever bandaged, never to see sunshine and light, and air.

Wisps of motion, tenderly folded and tucked,

  I am displayed under white sheets amidst shudders of pain.

Coming and going, they contend for my side,

My insides are layed out and leaking,

  I wonder what they want.

Streams of visitors,

  dumbfounded and waiting for me to make them comfortable, even laugh.

Silence and sunshine are mine when no one is here.

I am alone with my pain and new wardrobe.

I am encased and submissive, swallowed up my by insecurity

Shivering with this boastful, smiling courage as I falsely move on.

The songs are silent now and I wonder how many more of my parts will go

  can be taken

My legs will carry me and my arms will reach up,

  my voice will sound the same.

My essence is contained within this body’s shield,

  inside this gasoline shimmering shell

A matchstick could ignite my fury, my sorrow,

  my aching longing to sun my belly just one more time.