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Coping with New Pain

May 23rd, 2016 · 2 Comments

This is a winning entry by Amber for our Write Something to Share contest.

I thought I knew pain.  I’ve lived with pain for years after my ulnar nerve was damaged in surgery which led to CRPS.  But I got used to the daily pain, learned to live with it, and moved on in my life.  I thought I knew how to deal with pain.

But a kidney stone is a whole other pain.  I’d had several over the years, they hurt like crazy, I took pain meds and passed them on my own or had them broken up so I could pass them.  The pain went away a day or two after I passed the stone.

But this January, something changed.  My kidneys designated themselves as a kidney stone factory and I started producing and passing stones.  Not just a stone or two, but passing stones DAILY.  It was ridiculous the amount of stones I was making.  Since January, I’ve passed more than 50 stones.

Like I said, I’m no stranger to pain.  But kidney stones had always been acute pain that went away.  Constant pain in my kidneys and following my urinary tract was new.  I thought it would go away at first, like my other stones.  But it didn’t.

My urologist treated me at first, but then he made a sudden change of attitude when I’d passed about 15 stones, mainly because those stones were not showing up on any CT.  In spite of the fact that I presented him with several of the stones, he told me he didn’t know why I was in pain.  Not only that, but at my appointment, he wouldn’t even let me see him in the privacy of a room, he confronted me in the hallway, just inside the waiting room.  He didn’t believe that I was in pain.

The frustration of not being believed started all over again.  I saw a nephrologist who thought it might be a couple things and told me to go home and look them up.  I did and realized that none of them matched my symptoms.

I’ve always been a researcher, it is how I deal with diagnoses and not understanding what is going on in my body when it seems like it doesn’t make sense.  But in all my research, I couldn’t find anything that matched my symptoms.  There were a few things that sounded similar – Intercystial Cystitis and Medullary Sponge Kidney – but they didn’t match everything.

I had to find a way to deal with the frustration, since research was only making things more difficult emotionally.

I felt myself falling back into depression.  I knew that depression worsens pain, so I needed to help myself.  I increased the frequency of the sessions with my therapist and my psychiatrist increased the dose on my antidepressant.

Because of the pain, I ended up spending a lot of time in bed or on the couch.  One of the only things that helped with the pain was heat, and unfortunately, my heating pad isn’t very mobile.

I started training my dogs.  I had recently adopted a new dog, so he had a lot to learn.  I also worked with my retired Service Dog, and we even went to a show and competed in rally.  I spent some time volunteering at a local doggy daycare, where I could distract myself from the pain by playing with the dogs.

Animals are a real connection for me.  They accept me exactly as I am, regardless of the humans who doubt my experiences.  I could play fetch from bed or take my dogs for a run and they are just as happy.  They are excited just to be with me.  That is the connection I needed.

It is important for anyone struggling with pain to find a way to be connected with the world.  It is so easy to focus on nothing but the pain, but that does us no good.  As I focused on my dogs, customers’ dogs, and the customers themselves, I found the depression moving to the background.  I could distract myself from the pain more too.

I’m not saying that it is a cure.  My pain is still there, the doctors are still confused, and I’m still frustrated.  But sometimes, focusing on something else does us good.

Thanks to Amber for sharing her story.  Of note, most lists of the worst pains include CRPS and kidney stones, along with cluster headaches, trigeminal neuralgia, burns and child birth.  Sorry you’re in this club, Amber!

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The Pleasure of the Forest

May 16th, 2016 · 2 Comments

This is a winning entry from our “Write Something to Share” contest.

I have lived with RSD, now more commonly called CRPS, for 18+ years now.  I had a difficult time getting to the type doctor I needed.  Mine resulted from a work injury–so you have to deal with worker’s comp insurance.  When I did finally find a good doctor who was very familiar with RSD, and also worked with a Pain Management doctor, both who had done training at Johns Hopkins Hospital in Maryland, I was very fortunate.  I continued to work for three years longer, until it was beginning to encompass my whole body.  I just couldn’t keep up with my job anymore.  I enjoyed my job and was able to multi-task for years.  I did things I enjoyed, such as making quilts, embroidery, and learning to write poetry.  As one thing became too difficult, I tried something else to distract myself from the ever-growing pain.  Even though I had good doctors, I am extremely sensitive to medications, so things that worked for others didn’t work for me.  So I kept finding new things to distract me from the pain.  One the best, which I still do, is to write to friends, especially older friends and those who have lost loved ones in death.  It helped me to express empathy, even crying with them when appropriate.  I did this by making cards for them.  It was enjoyable for me and hopefully it was  of comfort to them.  I tried to learn to draw, sketch drawing, but soon it increased my pain to much.  So I kept finding new things to help me ignore the pain, but still be of help to someone.

One of the things I enjoyed learning to do was write poetry.  I used to walk in the forest with my younger brother.  One evening on the way home from work the following poem came into my mind.  I went home and wrote it down.  I’m going to share it with you now:

THE FOREST

Horns honk, brakes squeal, people yell,
It’s rush hour, everyone trying to get somewhere.
It’s a common scene, we know so well.
And the congestion of traffic really makes a stink.
How I long for the comfort of the forest.
Today for relaxation you must become a tourist.
But there’s no calm, no quiet there,
rushing to see all you can see before you must return here.
I don’t need a cruise ship, or an airplane,
or even a car or a train.
I don’t want to be a tourist,
I just want to go to the forest.
It’s easy to take for granted the things you can do,
when you’re busy rushing to beat the morning traffic.
But suddenly everything you do is a struggle,
painful, hard or impossible, it’s like you’re hearing a lot of static.
You can’t clear it up or make it stop,
so you lose the many things you used to take for granted,
when you were on top.
Now all I long for is the comfort of the forest.
I don’t want to be a tourist.
Just walk through the trees,
smell the fresh forest air,
hear only the birds and bees.
Feel the wind as it rustles the leaves.
Touch the soft moss on the side of the trees.
Drink in the warm sun as it streaks through the treetops.
Hear the crackle of sticks under your feet,
the only sound to interrupt your thoughts.
Such peace,
and the unexpected beauty of the occasional wildflower,
cannot be found in a 30-foot tower.
If only I could go to the forest and walk through the underbrush,
I’d never take for granted the simple pleasures of life,
I’d never be in such a rush.

I still do all those things, but not as much and only when the pain level allows.  But all these hobbies really helped me to keep going.  I also raise African violets.  I have one that was started from one of my Grandmother’s plants approximately 43 years ago.  I am trying to maintain some normalcy to my life.  I try to live as much as possible as though I’m not on fire and/or freezing all the time.  It’s not ever easy, but I love to think of the beautiful forests and meadows I used to walk in years ago, where something beautiful would pop up and delight all my senses.

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Living With, and Managing, Chronic Pain

May 11th, 2016 · No Comments

This story appeared in Practical Pain Management about a person’s coping skills for living with chronic pain and how she handles the challenges that pain presents.  I hope it will encourage you to share your story and your coping skills to help others.

Living With, and Managing, Chronic Pain:  A Patient’s Story

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2016 “Write Something to Share” Contest Winners

May 9th, 2016 · 1 Comment

Thanks so much to everyone who entered the contest.  Your submissions were wonderful.  The top prize goes to Susan, whose submission will be published next Monday.  Look for more entries over the next weeks.

This year’s prizes include:

  • A Got Vision account where you can records your own meditation and coping exercises
  • An engraved stone from the Etsy shop Rockkinit
  • A set of my nature photography notecards which benefit charities
  • An article  written just for you on the topic of your choice at How to Cope with Pain
  • (Prizes to people outside the US may be limited due to shipping costs)

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Last 2 Days for Submissions

April 29th, 2016 · No Comments

2 days is enough…  enough to send in a fabulous submission for our “Write Something to Share” contest 🙂

All sorts of entries are welcome – your pain story, your favorite coping tool, a poem, art work, a favorite quote, etc.  Share something that’s meaningful to you and that can help others.  April 30, tomorrow, is the deadline.  Send in your entry here.

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Send in Your Submission for Our “Write Something to Share” Contest!

April 25th, 2016 · No Comments

Our “Write Something to Share” contest is going on until April 30.  Send your submission in soon!  All sorts of entries are welcome – your pain story, your favorite coping tool, a poem, art work, a favorite quote, etc.  Share something that’s meaningful to you and that can help others.

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Engraved Stones to Remind You

April 18th, 2016 · 1 Comment

Our “Write Something to Share” contest is going on until April 30.  Send your submission in!

One of the prizes for our “Write Something to Share” contest is an engraved stone by the Etsy artist Rockkinit.  These are beautiful.

I like to carry something in my pocket to remind me of a focus.  Currently I’m carrying a small shell to remind me to hold a friend who’s going through a transition in my thoughts and prayers.  This woman and I are part of a small group of women who meet regularly.  We support each other and make each other laugh.  The shell reminds me that our group is also caring for the woman who’s making a change in her life.

When I carry something in my pocket, every time a feel it, I’m reminded to bring my attention to something I want to remember.  I enjoy the chance to bring my focus to something several times a day.

I thought the reader who wins this prize would enjoy having a reminder to breathe, to slow down, to enjoy a moment of relaxation.  Rockkinit also has other inspirational engravings such as smile, peace, pray, relax, rejoice.  Thanks to Rockkinit for donating this prize!

For articles about relaxing breathing, check here:

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“Got Vision” – Record Your Own Coping Exercises

April 11th, 2016 · No Comments

Our “Write Something to Share” contest is going on until April 30.  Send your submission in!

One of the prizes for our “Write Something to Share” contest is a subscription to Got Vision.  This is a wonderful website where you can record your own meditations and coping exercises, then make them into MP3s or CDs.  Got Vision provided me with a free subscription to try out.  I think it’s an excellent service.

After downloading the Vision Guide software, you record anything you want.  You could record guided meditations, relaxation exercises, guided imagery exercises, affirmations, etc.  You are then able to add music or nature sounds to your recorded track.  There are a good number of recordings on the site you can use, or you can add something of your own.  Then you either download your recordings as MP3s or burn them to your own disc.

To try out Got Vision, I recorded the breathing, visualization and guided imagery exercises from the How to Cope with Pain website.  I used a Mac with only the microphone embedded in the laptop.  I thought the recordings came out really well.  For the guided imagery exercises using the ocean as an image, I added beach nature sounds, which were a nice addition to the words.  I’ll be able to burn discs to give to patients, so they can have the exercises we do in sessions to practice at home.

There are some challenges to the system, but I thought they were managemable:

  1. You need either a computer with a microphone or an external microphone
  2. It takes a little while to get used to the system
  3. You need a computer where you can burn discs

I hope you give the website a try.  You can practice for free.  Thanks to Got Vision for providing a subscription for our contest!

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“Write Something to Share” Contest 2016

April 5th, 2016 · No Comments

It’s contest time at How to Cope with Pain!  We’re having another “Write Something to Share” contest, where readers send in contributions to share.  Your entry can be an article about your story, a quote, a tip about how you cope with pain, a photograph, or anything else other readers will enjoy.

Be creative!  Be amazing!  The contest guidelines:

  • Send in your entry here.  (More than 1 entry is fine.)
  • The deadline is midnight on Saturday, April 30.
  • The winning entry will be based on creativity and how much work went into the entry.

The winners will choose from these prizes:

  • A Got Vision account where you can records your own meditation and coping exercises
  • An engraved stone from the Etsy shop Rockkinit
  • A set of my nature photography notecards which benefit charities
  • An article  written just for you on the topic of your choice at How to Cope with Pain
  • (Prizes to people outside the US may be limited due to shipping costs)

Good luck to you!   I look forward to your entries!!!

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“Take Control of Your Pain” Expo 4/3

March 30th, 2016 · No Comments

The US Pain Foundation is offering a free day-long expo, “Take Control of Your Pain“, with educational presentations on Sunday, April 3 in Harrison, NY.  Can’t travel to NY?  You can also attend online.

Take Control LOGO White Clear

U.S. Pain Foundation is excited to partner with The New York Pain Society to offer a Take Control of Your Pain event.  Learn about treatments, how to utilize your voice with advocacy efforts and to find local support.

Doctors and patients will discuss the latest advances in pain management and complementary therapies. Our INvisible Project will be on display. Local groups working to help the pain community will also be in attendance. This is an event you don’t want to miss!

The speakers include:

  • Alternative Complimentary Therapies to Manage Pain, Sidra Malmud MD, NSLIJ Neuro (Robert Duarte MD)
  • Mindful Meditation with Val and Bill
  • How Medicine Helps Manage Chronic Pain, Yuri Ivanov MD
  • Interventional Options to Manage Chronic Pain (PM&R MD / Charles Argoff)
  • Headaches, Nicole Lopez, NP  NSLIJ
  • Medical Marijuana in NY to manage Chronic Pain, Grace Forde MD

For more information, see US Pain Foundation.

 

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