Category Archives: Independent Living

Rising above the pain

Independent Living

Teen diagnosed with Complex Regional Pain Syndrome begins treatment program with help of community

For 12-year-old Emma Harrington a fractured ankle revealed a more complex and painful medical condition. Emma is a bubbly preteen. She is sweet, pretty and has a pleasant personality. She loves 4-H activities, her animals and her youth group at Sunset Church of Christ. But Emma is in constant pain.

Emma, daughter of Amanda and Mike Harrington, suffers from Complex Regional Pain Syndrome or CRPS. This is a medical condition where long–lasting unbearable pain is experienced. It usually begins in a limb and can migrate throughout the body. Burning, stabbing or shooting pain is often felt. CRPS may occur after trauma, but in children and teenagers, it may occur with little or no injury.

Emma was diagnosed with the syndrome in January, although she has been dealing with the pain since October when she fractured her left ankle in three places. The fractures were non-displaced fractures (broken pieces still in alignment), her mother explained. Emma said she was speed walking through the living room and her foot hit a wood strip on the couch.

“The swelling was bad and the discoloring was also bad,” said Amanda Harrington, noting that two days after hurting her foot she was in excruciating pain.

“It has never gone away,” Emma said.

It was a month before they knew about the fractures. Her mother said that she got in to see a local foot specialist after a local orthopedic specialist refused to see her because of a past misunderstanding. The foot specialist ordered an MRI. Although he knew what was wrong, he sent Emma to a pain specialist in Lubbock for a diagnosis…continue reading

So sorry to hear of someone so young. It’s very fortunate though to have received a diagnosis so quickly, as it’s not uncommon for many of us in a similar situation to go years bouncing from doctor to doctor with no diagnosis.

My thoughts and wishes go to Emma and her family.

Sugarplum Visions and Coping During the Holidays

Independent Living, Intimacy & Relationships, Journaling & Healing, ,

Stress Meter w credit w creditThursday, June 21, 2007
By: Eve Reddin Lennon, CPCC

This is the time of the year when we find ourselves surrounded, if not bombarded, by a multitude of media messages suggesting what we should be doing for the holidays and how we should be doing it. These messages are designed to conjure up sugarplum visions of beautiful, festive, picture perfect, storybook holidays with smiling families and all the trimmings that will surely bring us all peace and joy and incredible holiday happiness. Like a Norman Rockwell painting, or a Hollywood movie, or even our own romanticized memories of tradition-soaked holidays past, these images are seductively appealing—but the problem is that they aren’t real. They are fictionalized, idealized versions of the holidays.

Consider for a moment the expectations we have placed on ourselves to make our own holidays fit these perfect, but imaginary and unattainable images in our heads. Way beyond our genuine and heartfelt desires for the Season’s Greetings, Merry Christmases, and Happy Hanukahs, we enter the season believing we are somehow obligated to follow a set of unwritten rules prescribing just what and how much we should be cramming into a few short weeks: “Deck the Halls!” (Inside and outside, upstairs and down until everything glows, sparkles, or twinkles, and smells like pinecones and spice.) Or, “It’s the season to open your hearts and be generous” (meaning shop till you drop, wrap it all up, and defer payment until January when you open the bills and go into stress overload).  It is also the season to “Gather your family” (whether you want to be with them or not,)to be the perfect hostess, to set a beautiful table and serve up at least one feast (dust off those cookbooks, shine up the silver, polish the crystal), and of course, to dress up, put a smile on your face, and attend all the parties, functions and festivities within a 250 mile radius.

Somewhere deep in our own heads is a list longer than Santa’s—of all the things we believe we need to or should do to make the season merry and bright. But the fact is that in order to do so we would each have to be a Martha Stewart clone with a staff of forty and the stamina of the Energizer bunny.

Wow. It is a recipe for exhaustion for nearly anyone, but for those of us with chronic illnesses like FM, it can be a recipe for a holiday disaster that results in unrelenting pain, brain fogs, and that deeply rooted, energy leeching fatigue that leaves us incapable of functioning; feeling isolated and depressed. Continue reading…

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4 Lies We Believe About Life With Illness

Independent Living,

True False Compass In Blue w credit

Founder of National Invisible Chronic Illness Awareness Week and Rest Ministries

When it comes to making the daily decisions about our illness it’s easy to rely on instinct. Occasionally, however, our instinctive decisions about dealing with our disease can lead us astray. What we once believed about our body and its limitations when we were healthy may no longer apply, and yet we can still have those same clichés running through our thoughts, trying to dictate how we live.

Here are four lies we can easily listen to that can cause us grief or even physical harm.

1. Your illness is a sign that you somehow messed up

There are great debates over how much control we have over our bodies. Those who are diligent about what food goes into their bodies and how much they exercise will often claim they have prevented disease. Unfortunately, although we can lessen disease by eating healthy, avoiding smoking, and other good health habits, these choices do not guarantee that we are exempt from a chronic illness.

Some people who have made wise health choices for decades, have had their bodies eventually betray them, succumbing to cancers or other health conditions. And although one can delay a disease they may be genetically predisposed it, it cannot always be avoided.

Don’t beat yourself up trying to figure out what you did wrong to cause your illness. Guilt, blame and shame are not going to help you. Instead, spend your time understanding more about your unique illness and how it affects your body.

What is the common treatment? What symptoms can you expect? How have people responded to treatment? Are there controversies about treatments? Then choose to become the healthiest person you can be — with your disease.

2. If you rest you are letting the illness win

In the United States, the afternoon nap gets little respect. Many countries have rest times built into their work days, from Latin siestas to afternoon naps in Japan’s workforce, with “nap salon” popping up in major cities. But in our culture the shift in attitude has been slow, despite the fact that Google offers employees “napping pods” to take a quick rest. Rest has traditionally been considered a sign that you are lazy and unmotivated.

Continue reading…

 

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A Pained Life: Timing My Pain

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time

by Carol Levy, Columnist

I was sitting at a table with some people I knew, slightly.

I did not know how much of my situation they knew, but the issue came up about my not being able to work.  I told them about the pain that comes from any consistent use of my eyes for more than 10 to 20 minutes before the pain becomes too severe for me to continue.

They immediately came up with suggestions, most of them centered on using a timer.

“Set it for 15 minutes so you will have to stop,” they suggested.

That’s a good idea.  In fact, I came up it with a long time ago.  The only problem is, it’s a lot easier in concept then reality.

I am reading a mystery, my favorite kind of story.  The book is getting exciting, the clues mounting, the name of the person “who dunnit” to be disclosed in… wait, bringgg!

Off goes the timer.  I can’t stop now.  I have to find out who did it.

I know better, but I think, as I often do, five more minutes won’t make a difference. 

But of course, it does.

Full Story

I’ve thought of using a timer myself for some activities, like working at the computer. That has seemed obvious to me but I hadn’t considered it for other tasks around the house or running errands. I think it might be something to definately try. I do find that I may have the energy to let’s say, go grocery shopping but then find that the last half I’m literally hanging off the shopping cart and just begging to make it to the car.

The idea of pacing can be difficult for us because we want to push through when we’re doing good and it can be difficult to recognize the line we cross that takes us into the descent of pain. How about you…what strategies do you find helpful for pacing and getting tasks done while still achieving the feeling that you’re accomplishing something.

Blessings,
Jacqui,Damselfly

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Travel and Packing Tips for Those Who Live with Pain – Pain Resource

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Chronic pain sufferers can find travel and packing tips to ease the pain

Ask any kid on a school bus in June, summer is the season to be on vacation. But when you live with pain, jockeying for a spot at the beach or squeezing onto another overbooked flight are more than just nuisances—they’re triggers. To ensure your next trip away from home is full of well-deserved R&R, follow these tips on how to prepare, what to bring, and when to change your itinerary. Consider it your travel guide to a pain-free trip.

Start slow. Feel your best before you hit the road, says Rebecca Rengo, author of Beyond Chronic Pain: A Get-Well Guidebook to Soothe Body, Mind & Spirit. “Many people rush around trying to maintain regular activities, while getting the house, the kids, and their jobs in order, which increases stress,” she says. Instead, free up your schedule in the weeks leading up to your trip. It’ll give you plenty of time to get organized, decide what to pack, and maybe even fit in extra workouts or a massage. Remember: You’ll need the extra energy to handle the inevitable disruptions of traveling.

Read more on painresource.com

Jacqueline Goguen‘s insight:

Packing light might have seemed obvious to me, but her points about flying right gave me a kind a ah ha! moment. I’m still learning about my disability/limitations and often actually forget I have them. Until it’s too late and I’m suffering for it. A good read with some good tips.

Do you have any tips you can add to the list?

Blessings,
Jacqui

See on Scoop.it – Conquer Chronic Pain