Ted Talk on Chronic Pain

A Wonderful 8 minute talk on chronic pain as a disease in itself.  Please share with those whom you wish to educate on the disease of chronic pain. 

http://www.ted.com/talks/lang/eng/elliot_krane_the_mystery_of_chronic_pain.html

Lady Creaky

There is a song in my head called Lady Creaky.  I changed the words and sing it to the tune of Lady Madonna.  When I wake up each morning, singing Lady Creaky, my bones feel relentlessly stiff, but somehow the humorous lyrics allow me to shuffle off to the bathroom and get the hot soothing water going to fill up the tub.  As I soak, Lady Creaky leaves for a time, a nag in the shadow of my day.  The warm nurturing water un-creaks me, lubricates me.

This is the time of the day that I feel temporarily old. This is a fragile hour.  I coach myself out of my dusty state of mind, and pursue the ritual of the day. I avoid the urge to connect with information. I engage in the ritual of feeding my dog Cowboy, who patiently waits by his food dish.  His patience inspires me. He is just shy of seven years old, and he shows signs of living with his own creakiness.  We're in it together.

I surround myself in tokens of inspiration. My home looks like a gallery of co-exist propaganda.  It happened insidiously; a few Buddhist prayer flags here and there, Quan Yin figures, medicine Buddhas, and chimes and bells everywhere.  We just added another Mezuzah to the doorway.  My collection of Dios Los Muertos figures grows.  My fireplace mantel has turned into a shrine, that contains gems of inspiration and memories. Mars and Tapper, two old Border Collies rest in jars at the center.  Close friends and family have built that shrine with me, and although crowded, I find little spots for more tokens of strength. It's a little out of control these days, as the bells and Buddhas are also outdoors now.  I laugh as my devout atheism is surrounded by icons.  'Just in case."   Dawn tells me it's an "Aquarian thing", the urge to hang shit around the house.

I know Lady Creaky will be back for another visit. I don't believe in the "war vocabulary" when it comes to chronic pain, or any other disease, or life.  It's more my nature these days to hang out with Lady Creaky part of the day and then I ask her to back off a bit. Her presence might explain other choices these days.  Technology fasts. Long meditations, tai chi and hikes.  Very girlie clothes- embroidered t-shirts, and pink Dansko clogs. Which reminds me, have you seen the lavender Chuck Purcell sneakers this spring?  To die for.

http://www.converse.com/?CSID=397#/products/shoes/jackpurcell/121574

Peace, healing, humor,
Cora


Feed the fish. Feed the fish.  Please.

LONG NIGHT

It is 03:30 and for some reason, I am still awake.  I'm not in pain, just awake.  I am  
reminded of a fortune from a cookie that I saved for years.  My husband found it in a cookie during the years he was a resident in medicine, often sleep deprived.  I am also listening to the BBC, and they are discussing nursing in the NHS.  I am happy to hear such strong advocacy for nurses.  Usually, with the soft voices of the BBC, I can fall asleep to the late night BBC broadcast. With such proper accents, bad news sounds less bad.

Well, here is the fortune:

Long is the night, to those who lie awake.

Sov Gott,
Sleep Well,
Guten Nacht,
Catch some ZZZzzzzzz

I'll be singing "Here comes the Sun," shortly

Peace, Healing, Humor

Cora

Feed the little fishies please
kind thanks.
❁❁

Fire

I read this poem today on the Writer's Almanac


Peace, Healing, Humor


Cora


Fire


by Wyatt Townley

It's only the body
It's only a hip joint
It's just a bulging disc
It's only weather
It's only your heart
It's a shoulder who needs it
This happens all the time
It's very common
It's unusual
For people your age
For people your age
You're in great shape
Remarkable shape
It's nothing you did
The main thing is
It's temporary
It's only a doll
In a house that's burning

" The Pain Passes, the Beauty Remains"

When I woke up this morning, I felt the heaviness of the news around the world.  It seems a time of unusual anxiety, wars going viral, environmental catastrophes creating suffering of immense proportions.  I also feel the weight of my pain.  Pain that is on such a micro, individual level.  Ya, it's personal. I own it.  It affects other around me, no doubt, but I own it.  I feel it.  We're friends.  Today, being the first day of spring, I pushed a little harder, like the brand new violet crocus that exploded through melting snow and heavy mulch. I pulled the shades wide open, got the coffee going, and turned on my computer.  My opening page is a site called Happy News.  That is what I need to see first thing when I turn on my computer.  Will and Kate, the Happy News site says, they are asking wedding guests, all 1,900 of them to donate money to 26 charities they have selected. Well, that is good news.  I need that filter from the overwhelming disaster kind of news.

I check in with my companion, "pain" each day, just to see where we're at.  I make my assessment, take my medication, do a round of tai chi to balance my energy and get the chi flowing. Sometimes it is so intense, that I cry. The flow of energy connects me to my pain, to the pain of the universe, and to the beauty in my little world, and to the beauty that still reminds me that this planet gives us lots of second chances. 

 At the state park where I walk I find a new memorial bench.  The benches are parked like gravestones all along the trails. You can tell the old ones from the new.  The new benches have fresh, unweathered wood with shiny brass plaques. The older ones are gray and musty, sometimes splintered with missing bolts. Today, I am compelled to read the new ones.  I know someone died recently, and the honor of memorializing them with a bench in their favorite surroundings must be quite healing for those still here. The new brass plate has a quote by Renoir.  "The Pain Passes but the Beauty Remains."  I needed that quote to find me today.  I remember a bench from a few years back- the man who died was young and a long distance runner.  His shoes were left on the bench and people were invited to put on his shoes and take them for a run. I wonder if the shoes recognized that an old friend was taking them for a spin, or perhaps a curious stranger wanted to get to know this man through the countless miles he spent in such experienced shoes.  There was a box full of letters from friends, close family members, a very poignant one from a teen-aged daughter,  and a guy who took the shoes for a run.  It was there for all to read and to know this spirited person who likely ran mile after mile on the trails of the kettle morraine state forest.  After reading a few notes and contemplating the beat up shoes, I discovered this man was a generous soul, who managed to share his love of nature through a pair of ragged shoes and stories from loved ones left behind, and those just passing through.

I think that a lot these days.  Pain is with me, but together we are passing through. We're not missing the beauty.  Sometimes pain and beauty do just fine together.

Peace, Healing, Humor.
Cora

☀ spring has sprung, feed the baby fish please

Fifteen Minutes

My follow-up pain management visit is a week away but I am already thinking about my fifteen minutes.  I know that the fifteen minutes includes getting processed by the clinic nurse.  Forms will be updated.  Pain scales will be checked.  My blood pressure will be assessed.  We'll have a superficial chat.  I will wait.  I will wonder what kind of day my doctor is having.  Is she running on time?  Did she get held up at the rehab hospital?  Is another patient eating into my privileged time?  I'll hope that she is having a good day.  I think of Lucy and Ethel in the chocolate factory.  They are stuffing chocolates into their mouths at a frantic pace as the conveyor belt speeds up.

My doctor will walk in with a stack of charts.  She'll greet me politely and get down to business.  In less than five minutes I will report the facts.  I'll summarize my quality of life in a few sentences.  I'll tell her how long I can sit.  I'll report on my sleep and bowel habits. Happily, I'll tell her that I am walking over an hour a day.  I'll try to slip in a personal detail. Tell her that I knitted my first pair of socks.  She'll tell me that all looks good.  Remind me of the clinic policy and suggest a three month follow-up visit.

She'll smile and shake my hand.  The nurse will be in to discharge me.

I will wait.

Until my next fifteen minutes.


Peace, Healing, Humor.

Cora

The fish are hungry.  

Ambivalence

No picture today.  Just an apology.  Over the past few months I've ditched my blog, pulled the haiku into hiding.  Every now and then I feel a need to go under the radar, into true anti-tech, Luddite territory. I do that and end up hiding my blog.  But there is certainly more to it. I do crave privacy.  I crave time for my own creativity. And life sometimes is low on spoons.  The more to it, I believe, is a desire now and then, or a wish perhaps, that if I pull the blog, maybe my disease will disappear along with it.  I mean, what's wrong with a little fantastical thinking now and then, you know?  Dorothy did it.  She just clicked those ruby slippers three times, announced "There's no place like home," and somehow she landed back in Kansas, safe at home, with Toto in her bicycle basket.  So, I allow myself a little fantasy as well, but when reality bites again, I miss the writing, I miss the community and education that evolves through blogging.  At times too, I wonder if I am "overexposing" a bit too much. The more I know about chronic pain, the invisible variety, the kind where you hear "you look so beautiful, how could you not be well." statements that are so kind and well intended, yet somehow you feel "less than", when you hear it.
So, I am back from Oz, and me and the Tin Man had a dandy time.  But, now it's time to write about my life that has something to do with pelvic pain, and a lot to do with living.

Welcome Back,
Cora

Partly Cloudy

My chronic pelvic pain is holding in a partly cloudy weather pattern.   For the past year, my pain has been well managed on a very low dose of sustained release morphine. I also take another medication, Cymbalta to help with the local and centralized nerve pain.  However,  new symptoms have been emerging in the guise of menopausal symptoms, maybe fibromyalgia, or "other".

prairie burn : in a week beautiful grasses and flowers and birds return

I have yet to find a pain management doctor to work with. The ones we have consulted, immediately state that they are procedural pain management specialists. They like to work with the part of the spine that attaches the head to the neck and the lumbar spine, or lower back. When it comes to the part that turns into the tailbone or pelvis, they get insecure, and turf us over to the gynecologists.  Most pain doctors like to do clinical procedures like nerve blocks.  Makes sense to them, right?  Just draw up some medication, inject it, tell the patient it might work, and then bill the insurance company.  No need to have a long, detailed conversation with your patient regarding the nature of the pain and what meds have been helping, not helping, or creating side effects.  And, then they don't have to deal with the cumbersome paperwork imposed by the DEA regulations and weed out potential drug seekers from the actual pain population. 


 We are a labor intensive bunch and low reimbursement units. Hate to break it to you, but we are called "units" when it comes to billing.  


However, it leaves the chronic pain patient without a captain of the ship, and often we get lost in a murky sea of symptoms. Symptoms that often are so familiar to us, but they can still cause us to lose our bearings.  


Over the past several months, I have been having a really tough time during the night especially.  Most of my friends and family have heard me complain of terrible insomnia, hormonal night sweats, fatigue and awakening feeling like I have the flu and totally unrestored sleep.  I talked to several doctors and recently saw a neurologist.  She was very suspicious that I was developing fibromyalgia. She wanted to start me on Lyrica, but I declined and wanted to do a little more investigation. 


Next, I saw a nurse practitioner/naturopath and she felt my symptoms were not classic fibromyalgia symptoms, but she knew they had a varied spectrum. She wanted me to test my hormones and also do a thorough evaluation for many tick borne diseases.  I am still waiting for those results.


In the meantime, I decided to do some of my own personal detective work as I was really getting frustrated and feeling low and defeated.  I started to document my symptoms and record when they were happening and describe them in full detail. 


A typical record would read like this:
04:00 can't sleep. legs ache.  sweating. flu-like feeling. so achey, all over. my whole body is weak. sweaty. muscles twitching. jaw hurts. my bones in my whole body hurt
08:00  feels like I didn't sleep at all.  drag myself out of bed.  take my morning dose of morphine.  Tai chi wakes me up.


3:00 tired, hardly did anything today. bones starting to ache.  want to take a nap.  take a vicodin 7.5 mg.  hour later feel better.


I started to notice this pattern of weakness and pain at certain times of the day.  It also coincided with when the morphine might be wearing off, or reaching it's nadir.


In the meantime, my husband finally found a pain doctor who actually works with pain patients like me.  She told him that she'd be happy to work with me and was concerned about my quality of life.  Ahhhh...  I love it when they use those quality of life sentences.  I'd like to have a quality life. She told him that even though the morphine is dosed twice a day, that it runs out faster and she often has to prescribe it 3x a day in divided doses.  That is what I figured out on my own, and it has already been helping.  I am looking forward to this visit.


I wanted to share this because it is likely a very common problem and it can happen for many reasons.  When we get comfortable with our disease and our doctors get comfortable with us, sometimes we stop taking the fresh look with "new eyes".  It is so important that when we see our doctors that we are very specific with telling them how our pain is now, compared to how it was at the last visit. Get detailed with describing the quality of your pain so you can help your doctor help you. All my doctors, including me and my husband were going down the fibro track until I really stopped and dissected the information and analyzed it by taking a step back and looking at the data.  We have to be our own scientists sometime.  The other thing that happens is that when you have been on a med for a long time, the doctor may get complacent about asking you how it is working.  With any neurologic drug, especially a narcotic, it is paramount that you let your doctor know if you think you are responding differently to a med than you did in the past. Or, if you have new symptoms, help your doc out a bit and actually say, "could this new symptom be related to my meds?  Let's talk about each of them".  Again, these are examples of advocating for your self, and actually helping your doctor help you.


Finally, as I am now bringing in a 4th doctor into my team, I need to make sure that all of her notes go to my other doctors so they stay up on my care.  She'll need to send copies to the gynecologist, my pmd, and the neurologist.  And I expect them to know the latest about me when I go for a follow-up appointment.  Finally, I will also share some current literature with them so they can learn a little more about pudendal neuralgia and pevlic floor dysfunction.  That team approach means that sometimes I coach them.  Even when you are at your weakest, try to take charge and be your own best advocate.  Try not to get burned in the process.


I'm hoping partly cloudy, becomes clear blue sky here quite soon.


Peace, Healing, Humor,
Cora




☀ my lonely fish are so hungry and they want to dance so please stop a while, feed them and play