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Tag Archives: pediatric chronic pain

Communicating vs. Complaining

I was asked to speak at a local retirement complex last week regarding Pain Management and issues related to my new book, Silent Courage. One of the topics that encouraged our group discussion was the need to express our needs. One of the participants asked, “But isn’t that complaining?”

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I said no. “It’s a good thing to communicate.”

Then she asked, “Why do we feel it is a bad thing?”

What a great question.

It seems that we confuse complaining with communicating. And the only difference between the two may be our attitude. Communicating is relaying information. Complaining implies that we moan or groan as we speak.

When we communicate that we have particular needs we are asking the world to stop, look, and listen. Then simply say, “What may work for you does not work for me. I need [state what you need].”

By sharing that we require something like a handicapped parking spot because walking long distances is difficult we are raising awareness that distance matters. If we travel through this world only thinking of ourselves, it is easy to remain selfish. If folks who were in wheelchairs, who could not climb stairs, never expressed their challenges, we may not have elevators that benefit us all in buildings today.

It is our attitude when we express our feelings that categorizes what we say.

My husband’s roommate in college was blind. When you would enter his space I remember asking him if it was okay if I turned a light on. His reply was, “Sure, I forgot you have that problem.”

Never be afraid to claim the space you  need for your journey. Others may benefit, too.

Facing our Fears: Chronic Pain Management

Anxiously driving to my doctor’s office yesterday, to have a small skin cancer removed, I heard this program on our local NPR station. The focus was on a group of compromised veterans who were challenging themselves to climb Halfdome in  Yosemite Park. I was gathering courage to face a small knife and here they were mustering courage to trust their prosthetic limbs on the face of a mountain.

As they passed the microphone around, they spoke of the importance of challenging yourself and building your confidence and trust.

What a marvelous way to think about dealing with chronic pain management. Finding those things that can reinforce our mental and emotional ability to deal is as important as our physical strength.

Check it out. They inspired me!

Measuring Chronic Pain Progress

It feels so great to be back posting. I have missed my blog friends but knew the only way a book gets written is to minimize distractions. I am nearing a conclusion, feeling good about it and look forward to sharing more about it soon!!

It dawned on me the other day that I might be using the wrong ruler to chart my progress. If I use one that has big spaces between numbers it feels like I make little progress. But if I scale down to a level that progress is actually measurable, like ounces on a digital scale, I have reason to rejoice.

Have you checked the type of ruler you are using lately?

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Turn Resistance to Chronic Pain Issues into Assistance

I have found myself in places I would rather not be. Being in pain is one of them. I have spent a lot of time and energy “trying not to be there.” I have denied my pain by refusing to recognize the importance of daily exercise, and suffered for it. I have challenged my pain by doing things I knew I should not do, and suffered for it. I have refused to accommodate my pain by doing things like wearing sensible shoes, and suffered for it.

A speaker I heard last week, Jaison, spoke about how we can change “resistance to assistance”  by altering our beliefs. Accepting that “You are in your rightful place” allows the energy you might spend denying a situation to be spent assisting with the situation.

Several years ago I was told that my blood sugar levels were high and I needed to see someone about controlling it. Expecting that this meant nothing more getting a lecture and another brochure, I willingly made the appointment. When I arrived the specialist took out a glucose meter and said “I want you to start taking your blood sugar levels every day.” I could have bolted at that moment. It took a lot of energy  not to flee.

I am not sure how much of what she said I actually heard.  Simultaneously echoing inside my head was,  “I don’t belong here, she is mistaken. My blood sugars aren’t that bad. I am a good person, I should not be hearing this.”

This was several years ago. I have accepted this diagnosis, but also realize that I still have resistance. I still need assistance with my resistance. When I realize that, like Lady Macbeth in Shakespeare’s Hamlet, “The lady doth protest too much,” it is a red flag to me that my resistance is strong and I am going to need a lot of assistance.  It is my choice whether to spend energy resisting or assisting.

Do you have a chronic pain related issue that you struggle to accept? What types of assistance have you had to use?

First Aid for Chronic Pain

This past weekend I was hit with a virus. It took me back to my pain days, when I was spending more time in bed than on my feet. I am guessing that most folks have had at least one encounter with a major virus, and can remember the anger, frustration and lack of energy that are part of this experience. Imagine how it would be if you were constantly trapped in this situation.

If you come across someone you love who battles chronic pain and you see them engaging in what might seem like a leisurely activity, like laying down and reading, don’t rush to judgement. They may appear to be lounging, but in reality, they are engaging in a healthy dose of “First Aid.” They are seeking a diversion from their situation. They are choosing to take control of their life and engage in something  manageable and meaningful. They are attempting to avoid suffering. This is good medicine. Encourage them and their efforts to stay engaged.

To see someone in pain, not engaging in a healthy activity, that is when you should worry. These folks are feeling a loss of control and trapped in their pain. Depression is sure to follow.

First Aid can consist of simple measures, but can also be life saving. Do you have certain “First Aid” measures that you employ to ward of suffering? What gives you a sense of being able to escape the ugly pit of chronic pain? Have you found yourself misjudged as being lazy when in fact you are doing the best that you can at a given point in time?

Playing with Chronic Pain

I just got back from an amazing vacation in Mexico that centered around swimming with dolphins. They are truly amazing creatures. I felt drawn to want to be around their energy. Evolving over ten million years ago, they are considered one of the most intelligent animals. Play is an important part of their culture. This tells me they understand something significant.

“The master in the art of living makes little distinction between his work and his play, his labor and his leisure, his mind and his body, his education and his recreation, his love and his religion. He hardly knows which is which…. He simply pursues his vision of excellence in whatever he does, leaving others to decide whether he is working or playing. To him, he is always doing both…” -Zen Buddhist teaching

With Chronic Pain, it is too easy to become serious about everything. Taking a lesson from the dolphins, that play is an essential activity, I am anxious to incorporate their wisdom. I can already guess that it will make some unbearable parts of my day more bearable. Hey, if we can redo the daily food pyramid, maybe it is time we rethink our priorities regarding daily activity needs.

Have you understood the wisdom of the dolphins and put play in each day? What works for you?

Transforming Pain

As a child, I remember my father doing a trick where he would hold a coin in his hand, make it disappear and then magically reappear behind one of my ears.I was amazed at how this happened.

This morning watching the Royal Wedding, it was equally magical for me thinking about how Kate was transformed from a commoner to a Princess with her wedding vows. She is no different a person than who she was yesterday, but now her life will have the capacity to expand in unimaginable ways.

Sometimes I think that as chronic pain sufferers, our pain has robbed us of our original identity. It has taken away from our self image and perceived value. What we need to do is give value back to ourselves. Believe that we are worthy of the best that life has to offer and never stop believing that tomorrow can be transformational, just like today was for Princess Kate.

Keep believing that transformations, large or small, are possible. Here are some magic coins for safekeeping.

Favorite Blogs

I was so humbled to accept an award from a fellow blogger, Wendy Burnett at Sick and Tired of Being Sick and Tired.  I  am just  getting around to fulfilling the requirements that go along with this honor by selecting my favorite blogs and doing a brief description of them.

* Accept the award and post it on your blog with the name of the person who has granted the award and his or her blog link.

* Pass the award to 15 other blogs that you’ve newly discovered. (if possible)

* Remember to contact the bloggers to let them know they have been chosen for this award.

Here are some of the blogs that have inspired, informed and uplifted me.

1 . Dancing with Pain, Loolwa Khazzoom is the founder and CEO of Dancing with Pain®, a health & wellness company that offers natural pain relief solutions and that has been featured in media outlets including ABC News and The New York Times.  Her approach and program are worth checking out.

2. How to Cope with Pain, a blog hosted by a Board Certified Psychiatrist in practice for 18 years in Pennsylvania who focuses on chronic  pain  patients. His blog is always insightful, provocative and educational. Sign up for his monthly Pain blog carnival.

3. Chronic Babe for those who are not defined by their pain, but want to help define pain. My only regret is that blogs  did not exist twenty years ago. This would have been a “home”. It is wonderful for networking, resourcing and just making each day more meaningful by being able to share with others on chronic pain journeys.

4. Addiction Free Pain Management, Dr Grinstead treats chronic pain patients and other co-existing disorders. His informed and heartfelt understanding of pain issues and broad based approach to treating them makes me wish I lived a whole lot closer to his center.

5. The Positive Mind, the Di Mele Center in NY is both blog and radio program focusing on helpful resources in dealing with life issues. And with chronic pain, I have found that the more tools I have in my tool bag to deal with stressors, the better I am at pain management.

6. Health.com always has interesting articles on everything from side effects of pain meds to improving your sex life when dealing with chronic pain.

7. Heroes of Healing Heroes of Healing is a non-judgmental, forum-based website for caregivers and those in pain to come together to share personal stories of struggle, perseverance and triumph. Very validating.

8. Life with Chronic Pain:A how-to guide Sue takes a glass-half-full approach to her disease and says she tries to do something useful every day.

9. Creaky Joints: Bringing Arthritis to its Knees . The name says it all. There are several great columnists all speaking from their personal and professional points of view on issues. Very uplifting.

10. Overcoming Pain by Mark Borigini discusses why people experience chronic pain, and the power they have to de-intensify it. Great topics, information and insight.

11. Rising Above, John has an incredible personal story and a very inspirational newsletter that you can get.

12. Graceful Agony a long time favorite. Jolene believes in living your best life in spite of pain and offers lots of reflective articles about her journey and resources.

13. Phylor’s blog I always enjoy her musings, creativity and alternative approaches and research.

14. HealthSkills a blog for health professionals working in pain management. I value her research and love to read what is being discussed. I believe that those of us in pain can help inform those who work with pain. And I value being informed.

15. Wordle.net this is not a blog but a great website for creating word clouds. I have used it to create lovely graphics for many presentations. Just upload one of your blog articles and see what it does with it. It  puts joy in my day when I see the words that I have used, their frequency and have them arranged artfully.

c. MaryByrneEigelFor me, being able to color, paint, sculpt or draw has been a means of escaping my chronic pain. Loading a paintbrush with a visually stimulating blend of colors and smearing it onto canvas or paper, savoring the ways the colors blend and interact with one another, transports me to another stratosphere, one that denies access to the physical pain echoing in my legs or hips.

Having had chronic pain since childhood, I learned at a young age that if I involved myself in something pleasurable I could alter my sensation of pain. Being able to work with color, whether it was planting flowers, designing with fabric or working with paint, paper or clay, I was able to engage my senses, brain and imagination and take pleasure in what I was creating and escape the confines of pain.

As a child I did not consciously know this but hindsight has shown me that there may have been several factors at work when I was engaged artistically.  Firstly the sheer sensory pleasure derived from working with materials. The earthy smell of clay, the visual vibrancy of bottles of paint, the rough-hewn texture of wood, and the sound of pieces of metal clinking together were all things that captivated me. Secondly, considering the possibilities of how I might do such things as bend colored wire into shapes or carve a solid surface were mentally challenging and required my full attention.  Thirdly, my imagination was sparked when I began to envision and see something taking shape.  It was like reading a good story, you weren’t sure where it was going to take you, but you knew you wanted to go along for the ride.

An additional benefit of art endeavors was that it gave me a sense of confidence that I could do things. Walking was often painful and it was isolating and hard to accept that something others did seemingly without effort was such a challenge for me.  But working creatively was what I could do effortlessly and it helped me regain confidence in myself that pain had stripped away.

Being able to enhance my surroundings with artwork helped to diminish the ugly environment of pain. Leaving that ‘place of pain’ let me feel that I could exercise some control in an otherwise uncontrollable situation. I may not feel beautiful but I could gaze on beautiful things and lift my mood.

I have been asked,  “Do you use your artwork to visually describe your pain?”  I have only done this occasionally and for personal work, not work that I intend others to view. Pain can be ugly and brutal, and it is what I wish to escape. I do believe there is great therapeutic value in being able to give pain a face and address it head on. But by focusing on other subjects of interest I can travel to other places and take my mind off of what I am feeling and replace negative feelings with positive.

Visualize Pain

There is a great website, Pain Exhibit.com, that has asked for submissions from chronic pain suffers worldwide to visualize their pain. The focus of the project is to be able to educate others about the experience of pain. It is affirming to be able to see  how using line, colors, texture and shapes folks can communicate their feelings and emotions. It is great to see how many pain related facilities are using the site for educational purposes. Even though some of the images are very honest and graphic, there are also those that affirm the strength of the individual to deal with their pain.

If you are so inclined to want to share your interpretation of pain, they are currently accepting new submissions. And if you are into visually expressing your pain, check out getting paid for submitting work to sites like fotolio.com. This site and others like it have some pretty simplistic images when you search under chronic pain, they do not come close to the intensity of images from those who have endured a chronic pain experience.

Have you done visualizations of your pain? How did it feel doing it?