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:
- Roses – CHECK!
- I Miss Vegetables
- Fetal Position
- Painting and the Art of Healing
- Did You Do Your Best Today?
- Human Body Coloring Book
- Go Big or Go Home
- Dock Jump
- Does This Pie Scare You?
- Meditation Malas and Healing Beads
- Iced Coffee
- Hello Spring
- The K Line Train and How to Keep Moving
- My Mum is My Strength
- Are You Feeling Trapped?
- Pain Chart
- IV Nurses and Other Bedside Visions
- The View from my Hospital Bed
- Hospital 2.0
- What’s on Your Shelf?
- Uranus Gas
- Uncertain Selfie
- Rest and Recovery
- Reflections From My Desk
- Wonderwoman Nail Polish and Power Stances
- Mother Mary in My Accessories Drawer
- Pebble Path to Cross
- From Soup to the ER
- Hearst out the Passenger Window
- Ice Cream with No Regrets
- How do you Measure Up?
- Beets at the Picnic
- Bleak Chair at Dusk
- Brick Walls
- My Hubs and Humor
- Defeated; a Self Portrait
- Grey Days
- Be Nice
- It’s Perfectly OK
- Showing Up
- WonderWoman Mother’s Day
- Sister Stash
- Room Service
- Stand Together
- Staying Connected with Snapchat
- Painting Even When You’re No Good
- Life & Love in Handmade Quilts
- Golf and WHITE SHORTS
- White Shorts 2.0!
- Swimming – Even Diving!
- White Pants!
- Collections and Reflections
- Tray of Treasures
- Swim Skirts and Bikinis Tops
- Heart to Heart
- Anniversary and the Fitted Dress
- Dog Days and Daughters
- Home is Where We Gather
- Saturday Dog Sketching
- Neighborhood Craft Day Q&A
- Road Trip Packing List
- Backup Wardrobe
- When in Doubt – Double Up
- Weekend in Mexico
Posted in Coping, Fashion, Keeping it Light, Notes from the hospital bed, Resilience and Grace, Resources, Swim Wear, Tid Bits, Travel | Tagged hospital, ileostomy, ostomy, ostomy bag, ostomy surgery, recovery, stoma, surgery | Leave a Comment »
Before I had my ostomy surgery, I reached out to find someone living with an ostomy, in hopes that I could get a better grasp on what it would be like. How would affect my day to day life? I wanted to know how it would feel. I reached out to a woman who had an ostomy and asked her what it was like. She replied simply, “well, it’s not a bed of roses.
This was before the internet. Before endless personal accounts and endless oversharing (like this blog 😉 ) before Google and all it’s horrifying detail and resourceful splendor.
Imagine a life without the vast resources of the Web. A time when the Information Superhighway wasn’t at my fingertips on my smartphone in the Chipoltle lunch line. I actually think it was a blessing for me because I am an image surfer. If I had Googled “images of ostomy bags” it would have been game over for me. I fainted the first time my bag was taken off and my stoma exposed. Just a little too freaky ahead of time. I’m fine now folks, but let me just say that there’s a reason we don’t have an easy view of our exiting excrement. So do yourself a favor and maybe don’t.
Everyone’s body is different and I can assure you that your own will feel and look completely different than what you see on an unnecessary search mission. Baby steps.
Also, beware of the negative posts from people who are in the midst of the challenges, or are experiencing poor outcomes or side effects. Complications are a part of this journey and no two people walk the same path. It can be enlightening, but also, it can be daunting. I try to give an honest account of what I’ve been through and sometimes it’s just really tough. Then there are days where for about 5 seconds I don’t think about my ostomy. The truth is, I can tell you it is always on my mind. That said, it doesn’t mean the awareness is negative, I am quite proud of my progress. You can be too.
Back to my point about the days before the Internet. It was back when you had to attend support groups to get information about how to function and feel good about yourself with an ostomy. Most of the time in the early stages, you’re not even up for that. Heading out of the house feels overwhelming. I imagined I’d never wear regular clothing again, never feel confident with intimacy, live a restricted life. I imagined wearing overalls and a lot of time at home.
Now my life is limitless and I no longer feel the burden and fear I once did with this very challenging life altering surgery. The truth is,”it’s not a bed of roses”, but the other truth is, it takes time to believe you will feel o.k. again and hearing other people’s stories can really help.
So that’s my motivation – to help people who are facing the challenges of living life with an ostomy feel good about themselves and a future filled with as much adventure as they can imagine.
I just got home from a trip staying with friends. This type of simple visit used to feel very overwhelming for me. I used to dread not being home with my comforts, equipment and routines if something went wrong. What if I have a problem with my appliance and I have to manage and maneuver a change outside of my comfort zone? (it has more often than not) What if I have to share a bathroom? (usually do) What if I forget something? (I always do) What if there is a natural disaster? (I always plan for it) What if I have a medical emergency? (it’s happened more than once)
“What ifs” can keep you from doing anything – and everything. So I prepare for the worst and expect the best. I’ve had both and it’s just as simple and as complicated as that.
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After multiple blockages and a couple of trips to the hospital, I’m scheduled for another surgery next week.
When I went over my surgery with the pre-op nurse today, I went to that place where I go mentally, explaining the steps and stages of my illness and wellness as if I was telling someone else’s story. Because I maintain a positive outlook, it’s sweet and strange to hear the empathy on the other end of the call. I simply don’t feel sick. And that’s because I’m not sick. I just have mechanical difficulties.
It’s been tough to come to terms with yet another surgery after feeling so great for so long. And I still feel great. I mean really great. Best I’ve felt in years actually. I’ve been very active and super healthy and it’s a big drag to have another setback.
As much as I’ve tried to rest it away, meditate and pray it away, walk it away and wish it away, my problem is not going away. My remaining small intestine has narrowed to the point that I can’t digest regular foods anymore. It’s twisted or bent or pinched like a garden hose and needs to be surgically repaired. And like a twisted hose, nothing gets through and the pressure builds. The strange thing about having a blocked intestine is that even when you completely stop eating, your body continues to pass fluids and gasses adding to the obstruction causing pain and nausea.
Blockages are extremely painful and scary. The pain feels like your bowel is about to burst, and in my experience, it has caused me to become very frightened, go into shock and hyperventilate. In hindsight I understand it with calmness, but during these episodes, the total loss of control is terrifying. The body has a fascinating way of taking care of things. What goes in has to come out one way or another. The pain is intense and so is the vomiting. And disgusting. DisGUTsing, if you will. Let’s just say it’s pretty un-cute in every way. Blockages can last for many hours and become serious in a hurry. Hospitalization is almost always necessary.
So upward and onward towards Tuesday. I’ve got this weekend to rest, sip tea and slurp some noodles. I’m washing my robe and preparing for my hall walking during recovery in the hospital and looking forward to clearer days ahead.
Then with any luck, the procedure will be simple and quick and this fair weather fan will be good as gold by Super Bowl Sunday.
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In my mind I have an ongoing list of things I thought I’d never do again when I got my ostomy. I distinctly remember an afternoon crying on the couch when I realized I may never lay on my stomach again. What a simple thing I had always taken for granted. I realized I may never be able to sleep on my stomach, lay down to tan the back of my legs. Rest in certain postures in yoga. So simple and thoughtless – all gone now. No longer would I be able to roll over. Or so I thought.
Over the years I’ve done many things I never thought I would do again. Become athletic again. Be unafraid of accidents. Dismiss fear.
Believe in myself.
Back in October I started going to yoga regularly. It’s been transformational in my life on so many levels. The meditation is deeply spiritual for me and the flow of all my bodily fluids and blood to my extremities is exhilarating. My posture is better, my body is stronger which has helped my abdominal pain.
I fearlessly wear tight yoga pants which takes confidence.
And I lay on my stomach during yoga which is amazing. Not for long, but I do it.
and Yes, you can too.
Photo Credit: Be Free Photography via Brooke Boone – Jesus At The Core
Posted in Athletic Wear, Fitness | Tagged Yoga | 1 Comment »
I’m only finding a bit of time to blog recently but wanted to share a great gift and thank a thoughtful supporter of wellness.
This month I’m volunteering for a Bunco for Breast Cancer fundraiser and I’ve visited local merchants to see who could sponsor our event with donations for raffles and a silent auction. It has been interesting to shift my focus from ostomy empowerment and focus on a disease that affects so many people.
It was without hesitation that most shop owners gave generously and I’m excited to combine my love of gambling (well – my love for tossing dice with the gals) and my wish to help.
Expressions Boutique donated a special gift bag including a necklace with one of these adorable charms. Appealing to everyone from dog lovers and cancer survivors and their supporters, there was a charm for everyone in this selection.
I’m getting ready to Roll the Dice to Beat the Odds in Tempe on Sunday, April 14, 2013. It’s not too late to sign up!
Learn more about our upcoming event here.
Posted in Great Gifts, Help Others | Tagged Breast, Breast cancer, Bunco, Cancer, Conditions and Diseases, Health, Support Groups, Women's Health Initiative | Leave a Comment »
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.
Posted in Travel | Tagged bowel disease, colostomy, ileostomy, Las Vegas, ostomy, Road trip, Station wagon | Leave a Comment »
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 3,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.
Click here to see the complete report.
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