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.

 

 

 

 

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

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

Act on your thoughts of others


I love architecture and words. Words and letters and lyrics. I love stories. Telling them, reading them, hearing them. I saw part of a word that made me think of a friend the other day. I remember reading “telling someone you thought of them is far less powerful than taking the steps to send them a note in the mail”.¬† These days we can connect with one another within seconds with cameras on our phones and the ability to check our email, Twitter and Facebook from anywhere. I’m not sure I buy into the idea of posting my “minute-to-minute” but I was pleased to be able to take this picture and send it to my friend so she knew she was a part of my thoughts and my day.

To make it easy to send a note to a friend or loved one, I keep a drawer full of paper, envelopes and cards for any occasion. It’s OK that they aren’t all originals – it is the thought that counts. My next project is making my own cards from simple photos, but for now, I keep lots of notes on hand and try to think of others often. I helps when I’m having a down day.

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

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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

Good Form

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When I was in the hospital recovering from ostomy¬†surgery, I was very low emotionally. Despite my attempts to cope, some days I just couldn’t muster up a smile, and felt little comfort in the smiles of others. Some days I felt shame, dull sadness or simply felt sorry for myself.

One day, perhaps on a whim, my parents brought me an artist’s figure. This simple gift turned out to be a coping mechanism for me, helping me face the day. Not only did I spend hours bending and twisting it’s joints, this¬†figure became a tool for communication – acting as a barometer¬†for those that entered my life and my room. Each day I would¬†pose it to reflect my mood. Typically the form’s head was low, or arms crossed, some days the face was in the hands or cradling it’s belly. Other days I lay it face down¬†flat on¬†it’s¬†stomach¬†– something I imaged I would never do again.

One day the fog of my misery cleared and I felt hopeful. I thought about sketching my little wooden friend and about all the other things I would do once I was released and able to restart my life anew. I’ll never forget that day¬†my parents¬†entered my room and saw my little figure, back arched and arms stretched – palms up to the sky. They smiled knowing I’d turned the corner.¬†

Get one for someone you love who’s suffering. It’s the simple things that can turn the day around.

Ask for help

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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

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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.