I Gave My Right Arm to be Ambidextrous writes a great article about the challenge when all your illnesses get out of control at once.

A Chronic Dose shares what pregnancy is like for someone with multiple chronic diseases.

Let’s Talk Pain has some more podcasts.  Check out the one titled “communicating about pain for people with pain.”

Going Down Swinging shares tips for keeping the romance in your relationship, despite pain.

Sheryl Aronson recommends singing and random acts of kindness to keep your difficult situations in perspective.  Wise words!

Health Skills recommends that pain practitioners ask about psychosocial issues in their patients, but do so with tact.

Andrea’s Buzzing About shares what she includes in her migraine diary.

Stress Relief Workshop offers information about meditation and stress relief.

The Health Matters Show reports on social security disability issues.  It’s important info I haven’t seen elsewhere.  (Scroll down to the 7/15/10 date, as I can’t link to individual posts for some reason.)

Living Your Best Life Possible writes about the importance of being kind to yourself.

Next month’s carnival will be on Wednesday, August 25.  If you have a pain-related blog you’d like me to consider including in next month’s carnival, let me know here.

Grand Rounds is published this week at Inside Surgery.

I never really thought of myself as an actress, but having had an over 30-year journey with chronic pain, I’ve had a lot of opportunity to hone my acting skills.  I realized at a young age that I felt one way and acted in a totally different way.

I remember as a child feeling the harsh intruding jab of pain striking my leg and looking to my friends to see if they felt it too.  They registered no reaction.  It was as if I was feeling something like a ghost or spirit known only to me.  So I acted as if nothing had happened.  This may have been how the role-playing started.  I pretended to feel fine when in fact I was hurting on the inside and didn’t know if it was appropriate to share my experience.  As I grew, pain intensified, and it was a continuing challenge to mask its presence with a smile.

But I was fortunate – we had a Drama Club at school, which I eagerly joined.  I loved the idea of playing a role and pretending to be someone else.  I don’t think I consciously made the connection that I was already acting by disguising my pain.  All I knew was that role-playing was a great escape.  The thought that I could get outside of my own body and bury myself in another reality was comforting.

I was never on stage again outside of Drama Club, but having experienced the magic of transforming myself, there was something very therapeutic about acting.  And I would continue to employ the few skills that I had learned on stage to deal with my pain.  I’m a firm believer that the Arts can work as a form of therapy in pain management.

Thanks to Mary for her remembrances.  Mary hosts this website.

Recently the pair of starlings nesting above our back door deserted their newborns.  One day the parents were going back and forth doing the constant feeding.  The next day they’d vanished.

To console myself, I followed a web link to a nesting Canada goose.  She was sitting on 8 eggs, but overnight the number was reduced to 6.  Ugh.  Apparently she may have eaten 2 that she knew weren’t viable.  Was this too going to be a sad story?

During the 10 days or so that I watched, Canada experienced a snowstorm with howling winds.  The goose absented herself from the nest many times, and at least once was challenged for ownership of the eggs by another goose.  Finally on Monday, May 10, right after an attack by another goose, mom was briefly forced off the nest, and it was revealed that 1 egg was hatching.  A tiny gosling struggled to emerge, and by evening was wobbling around the nest.  Five eggs remained.

Commenters on the site quickly brought forward information that the gosling had to be taken to water by the parents within 24 hours.  And once they travelled there, there’d be no coming back.  What would mom do if the remaining eggs weren’t hatched in time?

Late the next morning, with no signs of life coming from the 5 remaining eggs, mom covered them with straw as she usually did when leaving, and departed with her little one following behind.  The little family, dad included, walked slowly – it took five hours! – to a nearby lake.  The highlight video showing the young gosling sliding into the water as though born to swim is fantastic.  It ends with the fuzzy youngster paddling along between the huge parents.

The webcam stayed on for hours airing the gloomy shot of the abandoned nest with a couple of the intact eggs peeking through the straw.  Before she left the nest, mom dithered a few minutes.  This was quite a painful moment, as she stood over the eggs, looked around, started to walk away, looked around some more, and finally departed.

Sometimes you have to choose the lesser pain.  You can argue about the needs of the many and the needs of the few…  5 eggs vs. 1 gosling?  But what if the eggs never hatched?  The live gosling would be dead and there’d be no new life.

To some degree, whether it’s through illness or another difficult situation, we’ve all been confronted with tough choices.  (Perhaps not as tough as that of this goose.)

People with migraine frequently have to choose between putting themselves into situations of high risk for headaches, or living the life of a recluse.  And once a migraine gets underway, choosing whether and/or when to take which medication, a dilemma made even more painful when cost is a factor.

People living in poverty make difficult, painful choices constantly.  Will it be the rent or food?  And forget about any over-the-counter pain medications or non-traditional therapies.

As a spectator hoping for consolation for my lost starlings by being able to see some adorable goslings born, I didn’t get quite what I was hoping for.  But I received something valuable nonetheless: a demonstration of one of those many painful decisions we’re all called to make in life.  Whether they’re heart-breaking, head-splitting, mind-disturbing or otherwise, they are rarely simple, rarely made without regret, and sometimes forced on us by outside influences.  We can only hope that the outcomes are bearable.

And anyway, even that “only child” gosling was pretty darned cute.

Thanks to Janet for writing about the universal challenges we face.

Grand Rounds, a medical blog carnival, is published this week at Captain Atopic.

This year, the event will be on Saturday, September 11 in Philadlephia to benefit the Reflex Sympathetic Dystrophy Syndrome Association, RSDSA.  New this year, we’ve added an opportunity for walkers and those in wheelchairs to participate too.

RSDSA is a national organization working to end CRPS (also called RSD), a neurological pain condition.  You don’t have to have CRPS (RSD) to attend – anyone with an interest in pain can support the event.

You can participate in 2 ways.

1.  The first is to participate in the event.  You can bike, walk or use a wheelchair and bring along others to participate too.  Or, if you’re unable, invite loved ones, friends or colleagues to participate on your behalf.  The ride is 18 miles (with an optional additional 5 miles), and the walk/roll is 2.5 miles.  (Participants can do others distances if needed.)

Participants get a t-shirt and will be entered in a contest for some great prizes.  Registration is required.  If you’d like to register, request a registration form here.  There is a $25 registration fee (payable to RSDSA).  The deadline for registration is September 1.

2.  A less sweaty way to participate is to sponsor me (I’ll be riding).  A donation of any amount would be great!  I’d especially appreciate a donation representing the miles I’ll ride, for example, $18 or $36…  even 18¢ or $180!

You can donate online here:  3rd Annual Philly Bike/Walk/Roll for Pain Relief

If you’d prefer, you can donate directly at the RSDSA website and let me know in the comments how much you’ve donated in honor of the event, so I can add it to the event total.  (For my own patients who read this blog, you’re always welcome to donate directly to RSDSA or any other pain organization on your own, but I ask that you not donate at the First Giving link above.  It could be seen as a possible conflict of interest.)

Why participate or make a donation???

• to end CRPS
• to support a great national pain organization
• to support education about pain diseases
• to say thanks if you’ve been helped by How to Cope with Pain
• to participate in honor of a family member, friend or doctor
• to try for one of the great prizes for participants

I hope you’ll join me by participating or donating.  Thanks for your support!

Chronic Pain, a daily reminder of the poor decision-making capabilities of my late teens:  I suffer with a non-union sacral fracture that happened when I was dropped onto the concrete lip of our family swimming pool in the summer of 1975.  A life-changing experience, I’ve had to learn to live with a less intense and active lifestyle.

Until 2000 when I moved to Northern California, I dealt with no insurance and consequently no real continuity of care or pain treatment plan.  My husband and I “patched together” what we could with the various options we had in the back woods of Florida:  marijuana, non-steroidal anti-inflammatories, the occasional pain pill from an acute injury or dental issue.  We worked with what we had.

Now, and for the last eight or so years, I’ve been covered by medical insurance and able to get involved with a decent practitioner who’s developed a Chronic Pain Group that meets once a month.  We are 7 patients with a doctor, a social worker and an assistant to oversee and treat us individually and work with us as a group to help one another.

A regular medication regimen works with pain-relieving narcotics, antidepressants, female hormones, a migraine prophylactic beta blocker, and muscle relaxers for when nothing else will alleviate the pain.  Add to that massage, walking, stretching, yoga, cognitive science, trigger point therapy and a sympathetic  and smart husband of 25 years.  My life has changed for the better despite the pain every day!

Even patients with insurance are challenged by trying to find treatment that works.  Thanks to Lynda for a comparison of the treatment of pain with and without insurance!  (Thanks to Zazzle.com for the picture.)

I’ve recently found myself looking for work and would like to share with you some tips for job hunting, learnt through hard experience by me.

1. Work as close to home as you can.
I worked for a couple of places almost 60k’s from where I lived for a few years.  You just don’t get enough rest between days.

2. Take careful notice when you go to the interview.
Companies seldom remember that while they’re interviewing you, you are also interviewing them.  Find out what the working hours are.  I’ve had some companies tell me that they expected me to do lots of ‘compulsory’ voluntary work after hours and on weekends – for free! – which is ludicrous even for a well person.

3. Look around the office as they take you to the interview room.
If everyone looks stressed and unhappy, it’s not the place for you.

4. Ask as many questions as you can without giving the game away.
Get a feel for what the job will entail.  Make sure you’re realistic with yourself as to what you can and cannot do while you’re there.  Try also to get a feel for the personality of the manager to make sure you can work with that person.

5. If the job is good, then accept the offer if it’s given.
However, if you don’t like it or you know that this job will just torment you, don’t be afraid to withdraw your application.

I won’t give any advice for disclosing or not disclosing to an employer your health issues.  I’ve told and not told companies and have been sacked anyway.

Best of luck,
Kathy

Thanks to Kathy for some good tips for any job hunter.  Working with Chronic Illness is also a great site for work-related advice for those with chronic illness.  Lastly, Grand Rounds is posted this week at Other Things Amanzi.

When you have chronic pain, pain signals get “stuck” in pain-mode, no longer providing helpful information to you.  Chronic pain creates actual changes in your brain.  As well, when you’re in pain, you often use your body part less, so there are less signals of normal movement registering in your brain.  This can create a downward cycle:

Pain →
less use of your body →
fewer “normal movement” signals competing with pain signals →
more pain →
less use of your body, etc.

How can you break this cycle?

These newer treatments are based on the concept that re-training your brain can decrease pain.  These are the treatments I’m most excited about, and have been having good success working with patients with many conditions to help decrease pain.

Mirror therapy uses your visual system to “see” normal movement and reassure your brain that it no longer needs to produce pain signals.  Graded motor imagery is a step-wise program aimed at breaking up movement into components, allowing your brain to slowly resume normal movement without producing pain.

Mirror therapy has been shown to be helpful in:

• early CRPS
• phantom pain
• stroke
• low back pain

Graded motor imagery has been shown to be helpful in:

• chronic CRPS
• phantom limb pain

Ongoing research is helping us learn more about these exciting treatments and fine-tune our use of them.

Click here to read other articles about these newer brain-based treatments.

Other articles in this series:

1. Why comprehensive treatment works better
2. Benefits of a psychiatric evaluation
3. Treatment of psychiatric symptoms
4. Using psychiatric medications for pain
5. Learning psychological skills
6. Making positive behavioral changes
7. Making positive psychological changes
8. Benefits of supportive therapy
9. Benefits of a pain support group
10. New brain-based treatments

Background:  Our Pastor did a sermon on still waters recently and it really touched me.  But then yesterday we went for a stroll by the lake and the wind was brutal.  A normally still lake had waves crashing on the rocks.  This image stuck with me and I couldn’t let go of the feelings it stirred inside.

Rough Waters
4/29/10, 4am

My eyes drift to the crashing waters ahead of me
Chaotic splashing and spraying is all I can see
Focused completely on the rhythmic sound
Thinking it all makes sense, my answers were found

Yesterdays waters reflected the beauty of stillness
Not a worry to be had, it vanished all illness
Calming the world around with quiet serenity
God’s sign was instilling hope and I surrendered completely

I am transported in time, remembering tender memories
Peacefulness surrounds me, washing out pain and disease
Receiving glimpses of the puzzle that created my existence
Praying intimately to my Lord for His assistance

Like all things in this life, the waters are not still forever
The path completely vanishes, destroying all endeavors
Stress overwhelms the soul and disruptions leave nothing to conclude
Lost in a sea of vastness, drowning in the darkened mood

The image is deceptive and the rocks get pounded below
The pain and suffering continues as swiftly as the river flows
The mirror image of yesterday is shattered into tiny pieces
But the message remains forthcoming, “have faith in Jesus”

For the Lord will assist all who come to Him seeking grace
He will have open arms for you, waiting to embrace
Whether you are battered and beaten or the most precious polished stone
He will provide peace, forgiveness, love, hope and the feeling of never being alone!

Thanks to Denise for a beautiful poem.  Thanks to Bfraz at Flickr for the photo.

Four years, 1 month and 11 days ago, a nurse accidently inserted an IV into my radial nerve instead of my vein.  After more than a year of seeing doctors in several specialties, physical therapists, and holistic healers, I was finally diagnosed with Complex Regional Pain Syndrome.

My life now seems divided into “before”…  my relatively normal life prior to my injury, and “after”…  the search for pain relief.  I’m now at the stage where I’m not only dealing with the CRPS pain that has traveled up my arm, but associated weakness and atrophy.  My life often seems to be defined by and directed by, this thing called “pain.”

What I’ve learned is that pain is more than a physical feeling.  Live with it long enough and it can consume you.  It can lead to self-doubts, depression, anger issues, isolation and so much more.  It’s like the proverbial stone that makes waves in the water.

It’s never “just” about the pain itself.  Most days, trying to get rid of the pain is an all-consuming struggle, and the side effects are ignored and often only noticed by those with whom you share your life.  It can feel like your own private death, as you lose the ability to maintain the life you once led, the relationships you shared, and spend money you don’t have chasing treatments and/or cures.

Okay, that’s the down side, but I had to face it all.  And most of it, you face alone.  When you have a cast on your leg or sit in a wheelchair, you can expect some appreciation and consideration from others.  They can SEE your pain.  In cases like a broken bone, you can see the light at the end of the tunnel, a day when the pain will be behind you.

But if you’re dealing with CRPS (also called RSD), there may be no visible sign of injury and yet, years later, you’re still experiencing pain.  People don’t “get it,” don’t understand why some relatively minor injury years before can still be affecting you to that degree.  They can’t SEE the pain, and now, when you need them the most, they’re blind to what you’re going through.

Having experienced this, I’ve learned these things:

• Be my own best friend and caregiver.
• When I have pain, give myself permission to recognize it.  I bought a paraffin wax machine so I can give myself treatments when needed.
• Few things in life are more important than self-care, that it’s okay to say “no” to a commitment that would cause me more pain or wear me out to the point of not being able to cope with my pain.
• Even the most simple pleasures can help me relax and lower my pain… a good movie, listening to the birds, watching my puppy play.  These are things I often overlooked in my “before” life. Now they’re things I seek out and cherish.  I’m saving up for an e-book reader so I can enjoy the pleasures of reading again without struggling to hold a book in my hands and trying to turn pages without pain.  I love being around giggling babies and children… they make it very hard to feel sad or angry.

My mantra is “I own it.”  It reminds me that the pain and all that goes with it are mine…  that I’m responsible for doing whatever it takes to relieve my physical or emotional pain, that I can let go of the anger at the world for not being fair.  I don’t have to apologize for myself.  I am enough, just being “me.”  My pain is mine.  I’ll manage it the way I want and take the path of healing that works for me.  And when it doesn’t work, I get to decide what’s next.  Sometimes, that means having a good cry.  Sometimes that means a big bowl of chocolate ice cream.  Either way, “I own it.”

Thanks to Lynne for her wisdom.  I sense that it’s hard won, which makes it all the more valuable to share.