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

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!

Twilight Dreams

Sometimes there seems to be nothing to do, nothing going on and boredom sets in. I was in Phoenix recently and plans were altered due to rain. Rain we seemed to bring with us from Seattle. Usually this happens when I’m a little depressed and I allow myself to sit and stare. Don’t get me wrong, sitting in silence and staring at a wall is good for the soul. It’s simple meditation if you have nothing filling your thoughts. When a day is longer than normal, and you’ve had enough of your walls, try to go somewhere just to see that other people are engaging in activities and there is a world around with buzz and bustle. Maybe you live in a less urban environment, well, nature has its detail and amazement too. It all makes us feel connected somehow. More alone? Maybe? But certainly considering things other than ourselves.

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!

Surf’s up

Surf’s up – are you ready to get into the water? Sometimes I wish I had a wetsuit to cover me entirely from head to toe. Hold in all my parts and pieces. Some days I float on a raft and allow my mind to wander to days of bikinis and laying for hours on my stomach. Wherever you are in your adjustment to your life with an Ostomy, try to get back to the activities you once loved. Always check with your doctor before resuming activities and don’t forget to keep your supplies cool. Toss an extra pair of shorts or sundress in your beach bag. Being prepared always adds peace of mind, and when you have what you need handy, you can relax and enjoy the beach!

Renew your senses and achieve inner balance

soy-candle288

I just found a bargain on these fantastic soy tin candles. 10 hour burn for just $3.95. mi™ offers more than 40 spellbinding bath and body products. The line’s luxurious indulgence awakens the senses with its intoxicating Asian-inspired scents from sensuous sake to the aromatic tropical scents of dreamy coconut lemongrass and sweetly-refreshing Yuzu. “We created our skin care line with the simplest natural ingredients for restoring tranquility to one’s chaotic lifestyle,” says mi SPA founder Mimie Wong.

Read Mimie’s story of how she was “Inspired by the thought of renewing our senses and achieving inner balance”

Go Green in Style!

Want to brighten someone’s day? Deliver a simple dinner in a pleasing package. Presentation is everything, and what could be better than a vintage inspired tote? I recommend cooking up some soup and tossing in a fresh baguette. Nothing like soul soothing soup. Check out Pretty Green where the Pangea Bag offers a fresh appeal to green style. I am obsessed with vintage prints and love the quality of this bag. Great for shopping, as a travel carry-on or just keep your bits and pieces tidy in the car inside this funky tote. It has a water repellent lining too!

Layer your own look!

I just got back from a whirlwind trip of three cities; Phoenix, Philadelphia and NYC. Three different weather patterns and various events to pack for. I tossed out all of my packing advise and took everything. It was ridiculous! I lugged a huge suitcase through airports and at the Philadelphia train station, I fumbled down a huge flight of stairs almost missing my train to NYC to see my sister. All of this could have been avoided if I had followed my own advise: pack light, wear black. I ended up pulling out my simple sun dresses in Phoenix (black, brown, black…did I mention black?) and as always my favorite jeans were a staple. I layered with a little springy yellow sweater I found just before I left and it boosted my mood immediately. I added and dropped layers throughout the week. Wish I found this website before I left, I could have figured out my look ahead of time. Check out Martin + Osa, where you can get a feel for your layered look with their fun interactive mannequin. Drag and drop items you like and create the perfect outfit – have fun!

Travel in Style – Keep it Basic

Look effortlessly stylish in this comfortable patch pocket dress from GAP

When I travel, I try to use the Golden Flight Attendant Packing Rule: pack, then take half of your clothes out, then take away another half.  If you’re like most travellers, you image yourself wearing all sorts of outfits you don’t venture out in at home, or changing multiple times. Typically people on vacation want to relax and feel comfortable, it’s even more true for those of us with ostomies. When we are out experiencing new things, there’s something comforting about wearing clothes you trust and know wear well. People tend to default to their comfort zone and wear only a handful of their go-to outfits.

Over the years I have experimented with styles for warm weather travel to see what is the most comfortable. Comfort is key, but being stylish is important whether I’m the road, or on vacation. I have stuffed and squished more outfits, hats, pairs of shoes and alternate weather gear than could fit in my suit case. I’ve sat on top of my bulging case to force the zipper to close on the many variations of me I thought I would explore when away. The same thing always happens when I get to my destination or embark on a road trip. I survey the hopeful heap and dig for my cozy clothes. I wear breathable fabrics and as much as I try to break out of my habit, I always default to my safe place: basic black. In fact, I wear so much black it’s tricky to see if there’s anything in my black lined suit case now. An added bonus is I can dress in the dark because everything goes together. My daughter once asked me why I always wear “dead people clothes”. I just smiled knowing someday she would understand my relationship with forgiving, flattering, basic black.
 
I do bust out of my style routine from time to time when on vacation, and toss on a pair of locally made earrings or a fun scarf. I am firm believer in what I like to call “distraction action” and wearing colorful or eye catching accessories is key. I always pick up a piece or two when travelling to go with my black basics.  Since it goes with everything, I can pick up a floppy tank to top my black Capri’s or a tropical sarong to wrap around my black swim suit. I also trust my black clothes because they are forgiving if you spill and don’t show the dirt. And as the flight attendants say, “In the unlikely case of an emergency”…black gives me added confidence.