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

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

Connect with Loved Ones

I got a simple email from my dearest friend in the world. We’ve known each other since childhood and stay connected with quick texts and emails, never feeling any distance with time apart. She had a quote at the end of her email that expresses my belief that we all have the power to add positivity:

“How wonderful it is that nobody need wait a single moment before starting to improve the world.” Anne Frank

This Glassybaby arrived in the mail from a couple other treasured friends. It came with a note that shared the added goodwill that was spread with the purchase of the lovely candle, and the warmth it has added to my life.

My Glassybaby obsession began 5 years ago when my friend gave me one for my birthday and I blogged about it back in 2008 under Great Gifts. These babies glow in my home renewing my senses and connecting me to cherished friends.

Share some light today.

Karen

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?

Holidays in the hospital

During my final year of illness with Ulcerative Colitis before I had my surgery to get a permanent colectomy, I was puffed up from steroids and doubled over miserable, living in my robe and forcing a smile as I prepared for the holidays. It’s strange to remember how fatigued I was and how much energy it took me to do the littlest things.¬† I woke early every morning all amped up on synthetic energy from the steroids.

After several days of extreme pain with cramping and hours either in the bathroom or collapsing into bed,¬† it became clear that I needed to be hospitalized. My girls were 4 and 5 at the time. It makes me cry now remembering them walking beside my wheelchair as I wore my new Christmas robe. I had stayed home long enough for them to open their presents and could still smell the fresh Barbie smell on the hands of my daughters as held my face and said, “it’s O.K. Mummy”.

Looking back it wasn’t OK. It’s never OK to have small children be fearful of their mother’s well-being and have to sacrifice anything for their parents. It just shouldn’t be that way and as a mother, it causes extreme depression having to miss any moment of your children’s milestones.

This photo was taken when I was hospitalized for a bowel obstruction a few years ago. I cringe when I think of how many times my lovely daughters have walked through my hospital room doors, smiling and loving and wishing we all weren’t there.

My daughters are resilient and they are champions of my wellness but I still wish none of it had to happen. They are 18 and 19 now and we’re approaching Thanksgiving where they’ll come home from college and feast and sleep. I plan to be the healthy host but am careful in the days leading up to any event that causes extra stress. I usually need more rest and have to be very careful what I eat. I get all “chicken and rice” minded and start fearing vegetable trays.

I’m awake right now because I’ve been sick tonight and can’t sleep. I’ll need to rest today and hydrate since I’ve lost more fluid than normal and need to be ready for family happy cozy-ness. I have a my sites on a big family dinner and plan to eat ONE brussel sprout to eliminate the possibility of a blockages. I’ll take small bites and savor the moment of being together.

if you’re feeling sketchy…try this

Sketch Swap - Draw 1 to get 1

I stumbled upon this spontaneously as I was feeling sad tonight.  I was literally thinking about missing people I love and feeling apart from any connection. I was feeling lost and needing some creativity.

Draw cartoons, art, brainstorms, anything.

It made me feel better.

Give it a shot.

No one needs to see it but you….

I don’t feel blue anymore.

The road to resilience

I recently lost a very dear friend to brain cancer. I watched her health deteriorate, she maintained the strength to fight. Because of my own experience with my body letting me down, I initially was able to identify with her discouraging moments. After a while though, death approached and although I was not able to know what she was feeling, I was there to be with her. I promised to meet her where she was and be honest. I’ve been able to be resilient with my own physical challenges, but losing a loved one is taking me to new lows and reminding me I have to move forward. I found a helpful article that many of you might identify with as you face your low days and disappointments. When we feel depressed, it’s important to feel those feelings and be true to the down times. We also must try to be resilient.

What is resilience?

Resilience is the process of adapting well in the face of adversity, trauma, tragedy, threats, or even significant sources of stress — such as family and relationship problems, serious health problems, or workplace and financial stressors. It means “bouncing back” from difficult experiences.

Here is an interesting read on resilience from the American Psychological Association:

From The Road to Resilience: Factors in Resilience

A combination of factors contributes to resilience. Many studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models, and offer encouragement and reassurance help bolster a person’s resilience.

Several additional factors are associated with resilience, including:

  • The capacity to make realistic plans and take steps to carry them out
  • A positive view of yourself and confidence in your strengths and abilities
  • Skills in communication and problem solving
  • The capacity to manage strong feelings and impulses

All of these are factors that people can develop in themselves.

Strategies For Building Resilience

Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies.

Some variation may reflect cultural differences. A person’s culture might have an impact on how he or she communicates feelings and deals with adversity — for example, whether and how a person connects with significant others, including extended family members and community resources. With growing cultural diversity, the public has greater access to a number of different approaches to building resilience.

Some or many of the ways to build resilience in the following pages may be appropriate to consider in developing your personal strategy. Read full article here

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.

How to be alone

No weekend plans? Me neither. Sometimes it makes me feel lonely. Then I allow my mind to wander to insecure places of doubt and sad memories. This video views being alone in a lovely and nurturing light. I have weekend plans now: to be alone.

How often do I think about my bowel bag?

How often do I think about my bowel bag?

Enough to write about it in journals for 12 years. And another 15 before that, documenting my illness, disregard of my illness, depression and exhilaration. Adventures and stories. Research and library visits (before the internet) had me reading up on all the things I’d be able to do when I got my bowel bag but I found all of that hard to believe. I didn’t find any of it funny either. Couldn’t joke about feces exiting out my belly. I’m mean how ridiculous and upsetting. And how could I ever feel safe and secure in any aspect of my life. Well, the journey is in the journal. And now, I think, I’ll give it a real go and blog some of my moments. Dig a little deeper into some more private places. I’m going to take more risks. This pile of journals is only a sampling of my books of pain and prose, joy and remembrance. Attempts to document my life in a way that would be honest. Sometimes so scary I’d start writing in one journal only to switch halfway through a thought or story to another book and not date anything. Those were years where my trust was broken. It’s all here though, in these piles. Bits and drips of my thoughts, then sudden outpourings of emotion. Not always about my body changes and medical moments, but about the feelings and fear.¬† The change, the resurfacing to a new normal. Me. Mine. mykarekit. The whole kit and kaboodle if you will.

So read on if you feel like it and I hope it brings you some connection you might need. Otherwise, maybe my photographs will bring a sense of whimsy or reflection. We’ll see because 2011 is going to be the year of the blog for me. I’m ready. No time like today.

What should I call my ramblings that have me typing well past midnight. Did you hear about the midnight rambler? Everybody’s got to go. I just go all the time..anytime…unannounced.

Random Pages from the Ostomy Journal

Notes from the Hospital Bed

I’m your sister’s neighbor’s aunt

“What kind of bag would you like?” Got no choice.

Should I take questions? That always works well in public talks I’ve given. Far more interesting to tell you what you want to know and answer your concerns from my perspective. It’s refreshing. Drop me a line on my About Me Page