Creative Juices

I love to create things; whether it is crocheting a blanket or writing this blog there is something to be said for making something out of nothing.  One of my favorite things to do when I was in high school and college was to write poetry but somehow I got out of the habit.  I suppose it was because I was concentrating on creating sets for the local theatre department as well as concentrating on my work and the daily work of keeping a marriage fresh and viable.

I love poetry.  Poetry has always been a large part of me and one of my favorite things to do is to sit down and read some of my favorite authors: Keats, Wordsworth, Shakespeare, Browning, Dickinson, Plath and Whitman.  There are poems that remind me of what love is, poems that remind me of spring and new growth as well as poems that e  
xplore the darker side of humanity.

Recently, a friend took me to an event hosted by the Birmingham Jefferson County Libraries called Bards and Brew.  This event takes place on the first Friday of every month and is hosted by a different library in the system.  Basically Bards and Brew is a beer tasting and poetry reading.   The event begins at 6:30 pm, although the curtain goes up around 7 pm.  It is an open mike and people stand up and read original works although there are some that throw in a poem by a favorite author.  The night I went we tasted two different ales by a brewery in Mississippi and the friend that invited me had written a poem that he asked me to read for him because he accidentally left his reading glasses behind.  It was a beautiful poem and so, with his encouragement, I decided to try to put something on paper.

I remember my creative writing teacher in high school told me to write from my life experience and so my first poem; which will be read March 2, is one that attempts to describe my pain.  So, here is the premier of my first poem.  I hope you like it.

It’s Always There

It’s always there

No matter what I do or where I go, it’s always there.

It courses thru my body like a flood swollen river,

It ebbs and flows.

Dull, throbbing and constant like a beating heart,

Skin beet red and sensitive to touch;

Exploding like a tomato thrown against a wall.

Burning flesh and beds of nails.

 Lightning in a bottle.

There is no escape, no running or hiding;

A blatant thief secreting career, love, faith and finally life.

Its hunger never satisfied,

And it’s always there.

Silence is the Burden

CRPS is called an "invisible disease" because the signs and symptoms are often just a pain that lasts longer than the initial injury and is more intense and continuous.   It makes for a unique situation that places a burden of proof on the patient and often doctors or others who have not heard about CRPS tell the patient that what they are feeling is entirely in their head.   Some people with CRPS are denied help and care because of the ignorance of these people and it places them in a lonely, isolated place where suicide seems like the only escape from the constant pain.  In fact, RSD/CRPS has the highest suicide rate of any known disease.

 In the beginning of my pain journey I met my share of doctors who did not believe that I was in pain.  I had one doctor that forbid me to visit the ER because he said that I would be wasting the time of the doctors and nurses and taking away valuable time that might be needed by a “real” patient.  I met one doctor who said that I could not possibly be in pain because I smiled and laughed at the therapists.  People with crps become good at masking the way we feel.  We try to put a brave face on things and not show how we really feel.  I don’t know that if I had not masked the way I felt by plastering a smile on my face that the doctor would have taken me seriously or not.

There are an infinite number of doctors who have no idea what rsd/crps is at all.  It amazes me that a disease that has been around since before the civil war; I think that the first case was actually documented sometime in the 17^th century, is virtually unknown.  Each time I have been in the hospital I have encountered nurses who have no idea what I am talking about.  I try to keep a wallet card with me that explains what rsd/crps is and the best way to help me.  I have found that this helps somewhat although I have to tell each shift that a copy of the card is in my chart.  (Copies of this card may be purchased from RSDSA at www.rsdsa.org)

I believe that one of the reasons that those of us with rsd/crps are treated like we are crazy is because of the lack of education placed upon chronic pain disease by medical schools.  I was told by a friend who is a medical student that approximately 17 hours of their class time is devoted to pain and frankly, that is not enough.  Nurses receive even less education on pain.  Until pain is addressed properly and extensively by those teaching our future doctors and nurses then we will continue to hear that they have never heard of our disease or the infamous “it is all in your head.”

The second reason is awareness.  I believe it is every person’s obligation to educate those around him/her about our disease.  The time for being complacent is over.  We each have a responsibility to each other to promote the cause, symptoms and treatments that rsd/crps or any chronic pain disease requires.  I try to take every opportunity to talk about rsd/crps whether it is to the EMT’s who respond when I need to go to the ER or the nurses who treat me in the hospital.  I have talked to Sunday school classes, church congregations, school assemblies and even this blog is an attempt to raise awareness about what living with rsd/crps is like.

The last reason is research.  Chronic pain diseases receive very little research funding compared to Heart Disease, Cancer and Diabetes.  RSDSA and smaller support organizations attempt to raise funds for research by holding tag sales, walk/roll-a-thons, bake sales, auctions and merchandise sales; a drop in the bucket.   I know it is hard to contribute money when you are living on disability or workman’s comp but, we can promote fundraising through the organizations that we belong to and the people we know.  We can ask that monies used to buy Christmas or birthday presents be donated towards research and we can ask that memorial funds be set up at local funereal homes.  We are restricted only by our lack of imagination.

There is hope that this climate towards the chronic pain patient is changing.  The US Senate Full Committee on Health Education Labor & Pensions is currently holding hearings on “Pain in America: Exploring Challenges to Relief”;

http://www.help.senate.gov/hearings/hearing/?id=5906d585-5056-9502-5dd1-1d549d0d88f7&utm_source=Feb.22&utm_campaign=Feb22&utm_medium=email .

This committee is exploring the barriers to treatment and research that currently exist for chronic pain in the United States.

The latest statistic; provided by this Senate Committee, state that there are over 116 million adults in the United States that suffer from some type of chronic pain disease; more than Heart Disease, Diabetes and Cancer combined.  I hope and pray that this committee can lead the way to changing the way that chronic pain patients are treated and the dollars that are spent on research.  We all need to become more aware of what is happening and help those who already fighting to end the burden of silence that we all bear. 

The Whole Tooth

CRPS and dental problems go hand in hand.  The medications we take can cause the salivary glands to quit working and the patient can end up with intense dry mouth which can cause the bacteria in the mouth to stay on the teeth longer than usual causing the teeth to literally rot in your mouth.  I started having dry mouth in 1999 because of the opoid medication that I was taking because of my injury.  When I was moved from the Orthopedist to a Pain Management specialist and he started adding more drugs; the dry mouth became more intense.

I started carrying a drink with me wherever I went and I always had a piece of gum or a mint or a piece of hard candy in my mouth to stimulate the saliva but the lack of saliva and the mints and drinks all caused my teeth to deteriorate faster than normal.  I also have to admit that I have a life-long fear of dentists that goes back to when I was six years old and the dentist hit a nerve when drilling out a cavity so I only went to the dentist when I absolutely had to.  In 2005 I started having major pain whenever I ate and when I went to the dentist my sensitivity was so high that he couldn’t accomplish even a regular cleaning.  He suggested that I find a sedation dentist because of the sensitivity.

I will tell you that it is not as easy as it sounds.  I finally found a doctor that I liked and who would take me on and we scheduled the first real appointment to see what needed to be done. 

He ordered Valium for me to take an hour before the appointment and when I sat in the chair they put me on nitrous; something I highly recommend.  The news I received was horrible.  I needed to have two teeth pulled because they had deteriorated so far that the dentist could not save them.  I also needed 22 root canals.  The dentist explained that I had two options; the first was to go through the prolonged dental work and have the teeth fixed whether it be a root canal, crown or implant.  The teeth would be fixed in small sessions to limit the amount of pain I would have after the procedures as well as prevent any additional problems with rsd/crps.  I also have a small mouth so fitting instruments and fingers in my mouth made it so crowded that it actually added time to what a healthy person would normally use.  The second option was to admit me to a hospital and pull all my teeth in preparation for dentures.  The dentist explained that the rsd/crps had eroded the bone of  my jaw and so he was doubtful that I would be able to have a pair made that would be a good fit.  He explained that pulling the teeth or a pair of ill-fitting dentures could cause an infection that could possibly lead to me having a feeding tube for the rest of my life.  After reflection, discussions with my pain doctor and case manager, and two second opinions; I chose to sit in the chair and fight for my teeth.

It wasn’t easy and it took longer than he thought it would but after almost a year my teeth were saved.  In order to maintain my teeth he recommended that I see him every three months instead of the usual six.  I went through periods where my teeth felt and looked fine and then I would go through periods where the titanium posts some of the teeth were mounted on would break and have to be fixed.  I also ended up having two more teeth pulled because they had become thin and brittle after being whittled down by the dentist.  I also ended up having several crowns replaced and another root canal.  In 2011, the dentist decided to send me to a periodontist in order to have a deep cleaning and ward off gingivitis.  The two of them decided that it would be necessary for me to be seen every three months, alternating between the two dentists. 

I am happy to report that my teeth and gums are now healthier than they have ever been.  I use a prescription toothpaste and mouthwash to assist with sensitivity and dry mouth.  I can also say that even though I am nervous before a dental appointment that I am no longer scared of the dentist.  I still use the Valium and nitrous but; the appointments are shorter because I am not flinching at his approach. 

The important thing to remember is that no matter how bad it is you have got to fight for your teeth and keep them as long as you can.  Dental experiences vary from person to person and this is only my story but, I hope that my experiences will encourage those with rsd/crps to ask their dentist about seeing them more often.  Dry mouth and meds go hand in hand so keep an eye on your smile! 

Thoughts on Thanksgiving 2011

 (Originally Posted By Leslie Coggin in Living with RSD/CRPS at 11/28/2011 12:42:00 AM)

I thought that I would share some general thoughts at the end of this 2011 Thanksgiving week-end.  I am sitting in my living room looking at the lights on the Christmas tree that I just put up and thinking about the past year and how fast it has gone.  There have been good moments and bad, pain, agony, laughter and the feeling of being at peace.

I wanted to share with you the things that I am grateful for this year.  I am grateful that both my parents are alive and in good health.  I am grateful that I have a home and that my baby, Ozzie Newsome (rat terrier extraordinaire!) is there and happy to see me each time I walk into the house.  I am grateful for all my families, including the extended ones from my parent’s remarriages.  I am grateful for new friends and a closer relationship with old ones.  I am thankful that I have reconnected with some of my friends from high school.

I am thankful that I have doctors who understand my rsd/crps and me and who listen to me when I talk.  I am thankful for my case manager who is also a dear friend.  I know that my life would be much harder without her support, encouragement and prayers.  I am thankful for the people in my church and my pastor.  No matter how long it is between visits, they always keep me in prayer and welcome me with open arms when I walk into the sanctuary.

I am grateful that I can still live alone with a little assistance.  I am grateful for my rsd/crps family and those people who are willing to work with me to get the ALABAMA PAIN COALITION up and running.  I am grateful that my health seems to be holding steady and that I lost some weight this year.

2011 has been a year where I lost someone close to me (I love you Aunt Mag) and climbed over many internal hurdles.  All in all though, it has been a good year; a productive year.

HAPPY THANKSGIVING!!!

Edema

It has been a rough couple of days.  The pain has stayed at about an 8/9 and my feet look like pillows with stubs for toes.  Edema seems to be one of the curses of CRPS and there are days when I long to be able to wear the shoes I used to.  I went from beautiful high heels, cowboy boots and wonderful skinny flats.  Now, I wear crocs, tennis shoes 3 sizes too big and men’s bedroom shoes.  What a blow to someone who loves shoes!

I tend to swell in both arms and my ankles and feet.  My primary care doctor says that the edema in my feet has developed into lymphedema.   Stedman’s  Medical Dictionary’ describes lymphedema as  “swelling (especially in subcutaneous tissues) as a result of obstruction of lymphatic vessels or lymph nodes and the accumulation of large amounts of lymph in the affected region”.   Another name for it is elephantiasis (now THAT word deals a blow to the ego!).  The treatment is to wrap the affected areas in heavy bandages so as to disburse the fluid into the rest of the body.    This treatment is accompanied by massage and an hour with the affected area inside an air pump that forces the fluid upwards to the kidneys where it can be disbursed.  I am afraid that the massage and air pump will up my pain levels to where I cannot stand it but; if it gets the swelling down so that I can wear some of my shoes, even for one night, then it’s worth it… pain be damned!

When you have edema you end up retaining fluid and that means I really do not know what I weigh.  It also gets frustrating because I diet and diet and try to exercise but the fluid never seems to go away.  I am on diuretics but they just do not seem to help.  At one point this year the fluid went down and I discovered that I had dropped about 100 pounds then the next week came and I was up about 40 pounds.  I have three sizes of clothes; one skinny, one for when I am retaining fluid and one for when I am fat and retaining fluid.   Sometimes I dream about being thin, a size 8 or 6. But, the women in my family have always been cursed with ‘weight issues’ and now with CRPS I know that will never happen.  Weight issues relate directly to self-esteem issues.  I try not to let the weight bother me but it does.  It really does.  It is hard to eat healthy because the costs of fresh fruits and vegetables are sky high.   The pain and the edema make it difficult to exercise and I am sensitive to cold so unless the pool is at a high temperature, almost like a hot bath, then I have problems staying in the pool for any length and end up paying for it.  I know this sounds like a bunch of excuses or rationalizations but someone once said that they didn’t know of anyone who could get through a day without one juicy rationalization.  Those are mine. 

I believe that the edema related to CRPS is one of the cruelest parts of having this disease.  It knocks on all the doors; weight issues, self-esteem, financial, pain etc ….  Sometimes there is no way to fight it; you have to accept it and move on but.. oh how I miss my shoes!