How to Support a Friend in the Hospital

I’ve had another round of hospitalizations recently due to bowel obstructions. It’s been a challenging spring, being admitted three times in the month of May alone. Brutal. Frustrating. Kind of makes me want to go underground and not reach out to my support system. Mostly because some defeatist depression kicks in, and partly because it is completely exhausting and I feel miserable. Sometimes I think I don’t want to see anyone.

So when a wonderful friend asked if she could come visit, I replied, “I don’t think so, but thanks”. I’m really happy she saw through my sadness and stopped by anyway.

I’m a super social, high level extrovert. This means I am energized by being around people. I absolutely know that laughter is the best medicine and love love love being with family and friends. Wouldn’t you think I’d love visitors? Nope.

A few hours later, I got a text, “what room are you in? I’m downstairs and only have 5 minutes”.

Does it feel wonderful when a dear friend drops by for literally 5 minutes with trashy magazines, an activity and some candy for when I’m better?¬†You bet it does.

 

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Pictured here is the most excellent gift – a tray loaded with activities and comfort.

Bring a Tray of Encouragement

How fantastic is this All American tray, complete with:

  1. Wall art with a wonderful encouraging message
  2. Party lights so I could look forward to the Fourth of July next month
  3. Candy for motivation for when I can eat again
  4. Magazines to stay in touch with the really important stuff ūüėČ like Hollywood gossip
  5. Coloring book with some awesome double ended markers for creative distraction 

The added bonus of bringing a tray to a friend in the hospital was that it kept all of my bits and pieces organized. Earplugs, eye mask, eye cream, hand cream, music, magazines and of course compelling hospital literature. When the nutrition team brought my pathetic excuse for liquid meals, they simply moved my tray and placed the food tray down. Voila! Genius unexpected transition.

Over the years I’ve had tremendous support from family, coworkers, friends and neighbors. What I’ve learned, and experienced myself, is that you need to ask for help. Be specific on what you need. And when you think you don’t need a friend, you most probably do.

I’ve shared other ideas for how to support a friend in the hospital in other posts like Good Form¬†when my mother brought me a wooden artist’s figure and when my friend came by with beautifully scented hand cream. Hand made cards from my neighbor girls. Simple, loving, and uplifting.

It really feels good to get support and it can come in the form of loving texts, emails and phone calls, but the in-person visits, are often hit and miss. I just don’t usually want to be that girl in the hospital bed with people looking at me with pity.

Also, people always ask me what happened and why it can’t be fixed. ¬†I have no answers and it’s tiring. I do my very best to watch the foods I eat, get plenty of rest and drink lots of water. I know these things, I know how to avoid a blockages. Sometimes it doesn’t matter what I do right, some combination of stress, food, inflammation, dehydration or scar tissue causes my intestine to stall out, resulting in a lot of pain, nausea, and typically, if it doesn’t resolve itself, we’re on our way to the E.R.

There is some weird guilt thing that happens to me each time my life gets derailed by a blockage. I feel vulnerable and weak, I imagine people think I brought it on, could have avoided it, need to rest more, slow down, etc… ¬†I’ve had an ileostomy for 20 YEARS now and I am usually very healthy, active and balanced. I feel lousy when this happens and wish I could pin point exactly what went sideways but typically it’s not that straight forward. I’m sure I’m feeling sorry for myself, and also, just don’t have the energy for the questions. But I still need extra TLC even if I’m keeping the blinds closed.

So when you suspect a loved one is isolating themselves, I encourage you to push a little. Offer to stop by.

Insist on a Five Minute Drop By

I recommend letting your loved one know that you are dropping something off but only have five minutes. Make it brief and bring an activity and something to help them look forward to better days to come. The visit will probably last longer, but 5 minutes feels doable, even when you’re fighting off chronic illness depression.

There’s almost never a perfect time for a visit in the hospital and there’s no guessing when our doctors will stop by, or we’ll be whisked off for a test or be on a sightseeing walk around the floor. There is no good time, there is no bad time, just make it brief and be available to wait for a bit if necessary. Above all, show up.

 

 

 

 

Blogging One Photo at a Time

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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

Having an Ostomy – Not a Bed of Roses

Roses

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 ūüėČ ) 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.

Plugging Along – Bowel Blockages Be Gone

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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.

Karen

Yoga with an Ostomy

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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.

Move forward.

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.

K

Photo Credit: Be Free Photography via Brooke Boone –¬†Jesus At The Core

 

Bunco for Breast Cancer

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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.

Karen

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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

2012 in review

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.

6 Mile Hike

6 Mile Hike

Living in the desert offers exciting challenges. Staying positive with the ever-present sunshine is easy. Staying hydrated is more challenging. I didn’t bring enough water on this hike and paid for it with a bad headache after but it was exhilarating!

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‚Äôs adventures over a crackling campfire, and then get up to do it all again the next day. Last summer, I wasn‚Äôt 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‚Äôt 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‚Äôt 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