Art Helps with Chronic Pain

In 2010, the For Grace's 3rd Annual Women in Pain Conference was held. That particular year part of their theme was to focus on how creative expressions through the arts can work hand in glove towards helping a patient with chronic pain along with traditional medication. 


Many studies show that creative expression through music, writing, or art work can break the cycle of chronic pain. Radene Marie Cook, one of the speaker, suffers from chronic pain after she sustained injuries in an airplane crash. She stated, "It means that my pain, there are so many signals and it's at such a severe level, that without treatment I'd have a heart attack or a stroke". Cook stated that she receives some relief in art, poetry and music..


"There's something about getting inner conflict and inner feelings out to where your eyes can see it," said Cook. Art can be much more than a form of therapy. The artistic expression can provide a visual means for patients to communicate with their doctors about their pain that's difficult to describe."Some of the pain is indescribable when nerves are involved. It does bizarre stuff," said Cook. "But I could show them a picture of something being electrocuted and they could understand that."

Pain specialist Dr. David Bresler says art can be a distraction from the pain."When they realize that they're becoming obsessed and concentrating way too much on their pain, they need to break that cycle in some way, and let their mind focus on other kinds of things," said Bresler. One powerful prescription: focusing on the positive.

"One of the things that we've learned is that whatever you give attention to, grows," said Bresler. "Whether it's your garden, your children, or your worries, anxieties and fears. When people pay so much attention to pain, the pain   will grow. "It's that advice -- and art -- that keeps a smile on Cook's face."I wanted to put on the walls everything that I could look to and grab immediately that told me I was going to make it," said Cook. "It's a reminder to say, 'Yes, I can and it's going to be OK in the end.'"*

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FYI- Just the other day I read in the newspaper about this marvelous idea. It is a place where complete novices can go and in two to three hours produce a painting like the one above. I think this would be an excellent way to start your artistic juices flowing if you want to dabble in acrylics. Check out their website for more information. http://www.paintingwithatwist.com/ 

http://abclocal.go.com/kabc/story?section=news/health/your_health&id=7675028

Creative Outlets and Depression

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Today, I have noticed that I am in a bit more of a funk than usual. Then I started to examine what was happening in my life.  I am disappointed that my son won't be able to fly in for the weekend. And although that is impacting me to some extent, it isn't the end of the world. Physically, I'm much more fatigued then usual. Perhaps this is a clue. 


So what isn't happening because I'm too tired. Ah, I know. I'm not journaling, sketching, painting, cooking, knitting... I basically have not been having a creative outlet for the last couple of days.( I'll let you in on a secret. I write blogs on good days and program them to pop up on specific days). According to many psychologists:


 "Lack of a creative outlet has been shown to trigger many psychological states such as depression, stress and apathy"* 


I know that I always see an improvement in my mood when I do something creative even if it is coming up with a new dish in the kitchen. I didn't think of myself as a particularly creative person when I started this process. But truth be told looking back over my life, I have always been working on crafts. It is only because I was discouraged in the beginning that I never dabbled much in the fine arts. However, don't let the past dictate the future.  


It doesn't matter if you have never thought of yourself as a particularly creative person in order to express yourself. You don't have to create a masterpiece or a symphony; you don't have to share what you make with anyone. It is the act of expressing yourself and making something that comes out of your feelings or mood that can be helpful to you. 


Here are some creative outlets that you can try:


Writing: Multiple studies have shown that writing about the troubling events of life can help you to deal with your feelings. According to the  1999, Journal of Clinical Psychology, writing for 15 minutes per day for just three days, concerning a traumatic experience caused people to feeling happier. If you comfortable, you can share your writing with your therapist or someone you trust.


Painting: Get watercolors or acrylics, some brushes, an art pad of water color paper, or art board or canvas is all that is needed to begin painting.

Sketching: Grab an art pad, pencils, colored pencils, eraser, and perhaps charcoal and then pick your subject. Then you are ready to begin.

Music: If you use to play an instrument, now may be the time to dust off that instrument and start playing again. If you don't play an instrument, it might be the time to start learning an new instrument and take those lessons that you use to dream of. As for me, I need to get a new stand for my electric keyboard so that I can begin playing more consistently. Balancing on a chair is too difficult.


Photography: Cameras are so much easier to operate than they use it be. Even a beginner (like me) can get some great pictures. If you have a digital camera and/or a computer, it can be fun to use some unique editing. With some cameras you can even make movies.


Other Activities: How I lit my creative flame was through collage. It took the pressure off me of having to draw or write (I tend to be a bit of a perfectionist). After I did this for a while I began to feel comfortable with my art. I then started to branch out into other things like scarpbooking, writing poetry, knitting, crocheting, needlepoint, and creative cooking.


Just the other day I was at my friends gallery watching him work. He is a fine artist and he was adding a bit of collage to his work. I was surprised to see this in a fine artist but his work is outstanding. It gave me hope that even on days that when I participate in collage, I am really working on art.


Remember it is the artistic outlet that is important not necessarily the end result. The materials for your projects don't necessarily have to be expensive. I've gotten lovely yet inexpensive sketch books and journals on sale at Barnes and Nobles. Below you'll see my friend, Frieman's, creation made from recycle trash that he made as a requirement for an art class. Explore your creative side; let your inner child play. And who knows you might discover a hidden talent. 

A piece of art Frieman Stolzfus made using collage and recycled materials

* http://www.careerminded.ca/CreativeOutlet.html

It Isn't Funny When Your Lips Stick to Your Teeth

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In 2006,  I had a complicated migraine/migraine varient that left me with some cognitive deficits. It left me with some speech problems. At times, part of my mouth doesn't want to move (this comes and goes with migraines even now). It is not uncommon for me to lose my place in a conversation or to say try to say something and the wrong thing to come out. But instead of being upset or embarrassed or upset about these occurrences, I've learned to laugh at my mistakes (many times, these are extremely funny). But now I have a new symptom, and it isn't related to my migraines at all. My lips are now getting stuck to my teeth! I know, I know, very funny. NOT! Have you ever tried to talk like that. It is hard and you feel stupid trying to do it.


Well, when I have been chatting for a bit, my lips stick to my teeth. I can tell from the way this feels that I must look as silly as I feel, when this happens. However, constantly drinking is the only thing that keeps this from happening. Let's face it, beverages aren't necessarily available. All though many medications can cause dry mouth, I don't think this is the basis of my problem. I don't think this is the  issue as I've been on my current medications for a very long time.


Having a dry mouth can lead to tooth decay  ( and I hate going to the dentist). The body utilizes saliva in the beginning of the digestive process; it breaks down food particles that may be sticking to teeth. Lack of saliva can interfere with the tasting  and swallowing of food besides interfering with talking. Unfortunately, I just had an appointment with my rheumatologist so I'll have to wait a bit before I can get back in to see him. Dry mouth can be caused by medical problems or a medication side effect. So in all likelihood this is just part of my Mixed Connective Tissue Disorder (along with my dry eyes). Ah yes, autoimmune diseases - the diseases that keep on giving.

Open Letter to the Medical Community

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Several years ago I had a complicated migraine/migraine varient that left me with residual neurologic deficit mainly  in the .area of memory To say the care I got at the beginning of this episode was shoddy is being generous. After I was doing better, I put my journey in poem form an sent it to the doctor's office and hospital that were involved. I did this in hopes their care would improve.I feel any medical professional could benefit from reading this.


Feel free to borrow what you want to adapt this to your situation if you want to send this out to your care givers. If you do this, just credit the source. I previously published this poem on another site.

Dear Medical Community,

At times, you looked at me and yet you did not see me.
How could you look at the report in front of you, tell me the "good news",
that nothing is wrong with me, without ever looking at my face?
How can you tell me nothing is wrong without looking at me?

Why don't you look at me? Look at me! You haven't once looked at me.
Look at my face, please. See how my mouth lists to one side.
See how difficult it is for me to speak.

There is something wrong;
your report may be correct in that no anomalies were picked up by the test.
The test ruled some things out;
that doesn't mean that the problem doesn't exist.
How could you try to send me home without once actually looking at my face?
When I yelled at you to look, you actually looked,
As a physician extender you stated, "you don't know what else to do..."
Why didn't you call the physician, whose service you were on?
That's your responsibility; that was what was required by law, if you don't know what to do;
You shipped me to the ER.
You failed me...
You failed yourself...

At the ER, I became "the patient going to ICU bed 5";
the one wearing the one-size-fits-none-gown
with a medical record number on my wristband,
a wristband which belonged to an elderly gentleman.
Amazing and all this time I thought I was a 45 year old female.
Next will you not look and go on to  misdiagnosing my gender,
and  saying I'm delusional, and only think I'm a woman because you failed to look
Oh, I forgot. I'm the patient; you're the medical deity;
isn't that what you think MD stands for these days.

Yes, mistakes are made in a medical environment;
makes me wonder about the test I had, but I digress...
I heard the staff talk about the about me and the other patients;
we were referred to by our diagnosis, not our names.
Some were called the COPD'ers or the one in the fracture room...,
we were not even the patient with COPD or the person that sustained a fracture.

There is a distinction; their is a difference between people and their diseases.
It makes a difference as to how we are treated
It depersonalizes us if we are treated as a disease or task to be completed.
It creates distance between us.
I am not a number or an illness;
I refuse to be defined by such.

And when I tell you what medications I'm on, don't prejudge me.
You don't know my history, or why I'm on antidepressants. 
Being on psych meds doesn't make me psychotic.
You have no idea if I have been raped or have been beaten.
You don't know if my child was recently a victim of a violent crime.
You don't know if my marriage is on the rocks or not.
You won't know these things if I don't trust you enough to tell you,
but I won't tell you, if I don't trust you.
I won't trust you, if you aren't listening.

So please don't pigeonhole me.
Don't ignore me.
Instead help me.
That is why I am here.
Just because I was an in-house patient on a medical unit a short while ago,
is not an excuse for a less than through exam.
My neurological status has changed,
but no one seems to see the way my mouth droops,
or how I search for words.
I was in too much pain to try to re-explain for 3rd or 4th time what was happening.
Why bother; no one was listening to me anyway?
I was sent home with no answers.
I was  discharged to the care of a neurologist

At the neurologists' it starts out the same:
Please hear me; don't just listen, but hear what I say. 
Hear what I don't say because I'm too afraid to ask. 
Listen to me.
Listen! 
Watch how my mouth moves or doesn't move.
Hear the slur in my speech.
Watch me search for the words that elude me,
See what is happening to me.
What is happening to me?

Look! Listen! See! Hear! Hear my pain.
Hear my history and record it accurately.
It makes a difference when it comes to a diagnosis.
But doctor kept mixing up the way things happened
and when I had the various tests.
I correct him; he didn't listen.
I told him repeatedly the correct sequence,
but he didn't change a thing.

When you are a physician, 
and can't keep the history straight because it is complicated, 
or you are tired from working one too many shifts, 
or having too many patients to keep things straight, 
it doesn't make you less of a professional to ask for clarification; 
that shows me you are more of one. 
It also shows me you are human.

Working in the medical community is a hard and often thankless task;
for the most part good care is given.
However, in the business of the work-week,
the true reasons we are at work can become forgotten.
The reason we are here is for the patient.
Trust me I know how hard it is.
I'm an RN by profession;
but when I was with you,
I was your patient.

Please remember the patient;
hear us and what we say,
what we may be too afraid to voice.
And when you find out your initial diagnosis was wrong, apologize.
Medicine isn't an exact science, as much as we would like to think it is.
It is an art, so is listening.
So Please, Please Listen.

Sometimes I feel Invisible...

Not only are many of my diseases invisible; but, I also feel invisible at times. Sometimes the first thing people seem to focus on is my cane or the fact that I am using one of those electric carts at the grocery story. It is at those times I feel the most disable. Sometimes people look at me funny as if I don't belong on the electric cart; they look at me like I'm lazy and I should walk. Yes, I admit it, I'm overweight but I'd give anything not to be riding on the cart. It isn't that I can't make it to the back of the store it is that if I get to the I can't make it back to the front of the store. 


It took me years to accept the fact that I an disabled. I refused to fill out the form for a handicap placard, although to the rest of family it was obvious that I needed it. Apparently, d'Nile isn't just in Egypt. So finally, I put aside my pride and got a handicap placard. I certainly wasn't fooling anyone by not having the placard, and I was over fooling myself. I could couldn't even make it from the sidewalk to the front of  the building. Surprisingly enough, it wasn't the Mixed Connective Tissue Disease the made me need the placard; rather, it was my Asthma. Believe it or not Asthma can be very debilitating and disabling. 


The other thing that makes me feel invisible is when you are a patient  in the hospital when you hear the staff discussing you. Suddenly you become the one with the migraine, asthma, etc in room such and such. Suddenly your personhood has become interchangeable with a disease. 

Apparently, I'm not the only one that feels invisible because of my disability. Take a look a the video I found. It really drives the point home and it was filmed half way around the world in Jordan. It is called:

"Look at me not my disability!"

Dry Eyes, Restasis, and maybe Autoimmune Disorders?

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I'm sure you've seen the commercial on TV, the one about Restasis. I get angry every time I see that commercial. They act as if taking Restasis eye drops is no big deal. Truth be told, actually having to take a prescription eye drop is a  big of deal. When I first got contacts as a teen, I was told I'd always have to put drops in my eyes when I wore contacts. I was told I don't blink enough. Whether that is true or not I don't know if it was the reason my eyes were dry; I really don't know...

In some cases dry eyes can be caused by something as simple as menopause, Blepharitis (inflammation of eye lid), or Keratoconjunctivitis sicca (dry eye syndrome) . However, some of the reasons why people have dry eyes can be serious such as having one of the many auto immune diseases (like I have) that can cause dry eyes  such as: Sjogren's Syndrome, Lupus, Mixed Connective Tissue Disease, and Rheumatoid Arthritis to name a few. The Restasis commercial ends by saying, "talk to your doctor about Restasis". Perhaps the commercial should end with something like, "talk to your doctor about your symptoms of having dry eyes and ask him if it is possible it could be something more serious like an autoimmune disorder. Remember Restasis might be just what the doctor may order".

Below is a copied from the Sjogren's Syndrome Foundations' website, If you care to make a donation to help fight this disease, the link in the post will take you back to Sjogren's Syndrome Foundation website.

July 23rd is World Sjogren's Day!

On Monday, July 23rd, the Sjögren's Syndrome Foundation (SSF)will join with Sjögren's groups around the world to celebrateWorld Sjögren's Day.  We hope you will consider making a special gift to commemorate what would have been Dr. Henrik Sjögren's 112th birthday. Every gift will go to support research and education for the disease that Dr. Sjögren devoted his life to. Click Here to donate to research for World Sjogren's Day!

Medications & Coffee Don't Mix Well Together

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No, that deranged looking lunatic drooling over her coffee is not me, I swear. But keep me away from a hot beverage on a cool morning and I can get a little, shall we say, not to nice and leave it at that. And this morning was a cool summer morning thanks to the refreshing rain we had over the last two days. First thing in the morning is medication time, also known as first breakfast. I usually down my first breakfast medications with water followed by something else to drink. This mornings chaser was going to be coffee; then I stopped myself. Didn't I hear something about how medications and coffee don't mix well together. Now, I'm not that into following every tidbit on the news; however, when it comes to me and a cup of coffee, I perk up.

Why is what most people want to know. Well the coffee can interfere with how the oral medications are used by the body. For some, coffee enhances the effect of the medication; for others, the absorption of the medications are blocked. Many medications as diverse as antidepressants, thyroid medication, estrogen, and osteoporosis. For example: the antidepressant Luvox slows the breakdown of caffeine, increasing the likelihood of jitters. And Premarin—taken by women for bone loss and menopausal symptoms—also competes with caffeine metabolization, raising the chances of headache, rapid heartbeat, sweating and more. The antibacterial drug Cipro, certain MAOI antidepressants and common asthma drugs may do the same. Caffeine and other coffee compounds can also combine with metabolizing enzymes, interfering with the absorption of drugs and making them less potent. Drinking black coffee with the osteoporosis drug Fosamax cuts effective absorption by more than half, and reduces the effectiveness of thyroid drugs by almost as much. Finally, as we all know, caffeine is a stimulant: when you combine it with other stimulants like ephedrine, Adderall...So while coffee itself may not ruin your health, its effects on the other drugs you take just might.*


Well, I guess on cool mornings  I'll make myself Chai Tea today,; well, until someone tells me that doesn't mix well either.








*http://www.thefix.com/content/coffee-and-meds9304
http://well.blogs.nytimes.com/2011/11/28/really-the-claim-coffee-can-prevent-some-medications-from-working/?ref=science

How It Feels to Have an Invisible Illness

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Allowing your invisible illness to show is akin to "standing naked in a crowded room of well dressed people."  I saw this statement on the blog site, Sick Momma and all I could picture was the story of the Emperor's New Clothes.

In case you have forgotten it: Once upon a time there was this Emperor that was so full of himself that he was easily trick by gangsters posing tailors. They said they'd make him some duds that only non fools could see. So when they bought the Emperor the suit and he couldn't see it, he thought OMG, am I a fool or what. And not wanting to appear a fool, he pretended to put the invisible suit on, when in truth there was nothing there. So the old fool, the emperor, went out in public in his invisible clothes. No one wanted to tell the Emperor that he was naked except for a punk kid. But the Emperor continued to pretend he was still dressed because he didn't want to appear the fool that he was.  

The Emperor was "naked' in crowd of dressed people. That is how the people with an invisible chronic illness feel, naked. Those with invisible chronic illnesses feel vulnerable, living in a world of healthy and whole people. 


Those with invisible chronic illnesses walk around with their mask on. They only let there mask slip a bit to let there nearest and dearest friends and family know about their illness. But they shouldn't have to live this way. Having medical issues doesn't mean the person was cursed by God, a sign of moral failings, a sign of weakness, or they in some way deserved to become ill. It just simply means they are ill.

Invisible chronic illnesses are easy to hide. You can hide them from others and you can deny them to yourself at times (especially if others don't know you are ill).


I consider myself one of the lucky people with an invisible illnesses. One of my illnesses is Post Traumatic Stress Disorder. During and educational seminar that I was helping to run, I had a flashback. Suddenly, about 50 people that I worked with became very aware that I had PTSD. My invisible illness was "outed" so to speak; my invisible illness was visible.

Being "outed" is probably the best thing that ever happened to me. Hiding an illnesses if a horrible way to live. It is living the life of a lie, it is not living in the reality of the truth. I think everyone with invisible chronic illnesses deserves the best in life they can get, and the best includes the truth. Now, I get to celebrate openly, the fact that I survived what was once an unspeakable time in my life. I get to celebrate that I am alive, living with chronic illness, but alive. 


Now I am very upfront about my invisible chronic illnesses when appropriate. If people honestly want to learn about the illnesses I have, I am more than happy to teach them ( I am a disable RN). I know that the best way to get rid of stigmas is to speak out about them; it is important to educate those around us. As for me, I like to share the hope and freedom I have gained by speaking out.

A Migraine Simulation: a Tool to Use to Explain What a Migraine is Like

I planned on posting something entirely different for today; however, I an still getting over a migraine. So under the circumstances, I think this simulation may give some a better idea of what it feels like to have a migraine. I wish I could pull up the actual video but it isn't a YouTube Video. Sorry about that. It is from Vidaru (I never heard of them before).  So to get the video, you'll need to click the purple line below:

                    http://vidaru.com/migraine-simulation/35420948#.UAjEYRJZx_U.blogger

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Summer Migraine Triggers

I've been getting more and more migraines as the days have grow hotter and more humid. From my nursing days, I new that the frequency of Er visits for migraines increased in the summer months increased. But my question was why?

I began to  explore the relationship between migraines and weather. It wasn't difficult to find information on migraines. More attention has been given to migraines in recent years, not only in nursing publications but the information has also been available to the general public.

 First there was the commercial about Chronic Migraines and the corresponding website, mychronicmigraine.com . Shortly after these commercials the story broke concerning ABC's news corespondent Nancy Scuri, who was experiencing a migraine while on the air.

I know I covered some of this the other day; however, someone found a great short article and videos from the ABC network on Summer Migraine Triggers. The article and videos explain the whys of why people are more prone to migraines in the summer. Below is a copy of the article and some videos from ABC:

Summer Migraine Triggers

It's a difficult time of year for frequent migraine sufferer Nancy Scuri. Certain weather and atmospheric factors affect her sinuses, which, in turn, trigger her debilitating headaches.


"If a storm comes in where barometric pressure changes, that can affect me and set off a migraine," she said. "I also have an allergy to tree pollen, which affects my sinuses and breathing.


"The tree pollen season has nearly ended but summer still brings plenty of storms that can come at any time."I constantly watch the Weather Channel," Scuri, 43, said.


Scuri of Hauppauge, N.Y., isn't the only one who gets more frequentmigraines during the summer. Experts say there are numerous triggers that can make summer an especially painful time of year for many people prone to migraines. Some research has suggested that summer is the worst time of year, but for others, the winter is worse," said Dr. Joel Saper, founder and director of the Michigan Headache and Neurological Institute in Ann Arbor.


Those who suffer in the summer might experience a migraine when exposed to some of these common triggers:


Dehydration


Losing a lot of water and sodium through sweating can trigger migraines "If a lot of sodium is lost when sweating, it can dilute the bloodstream a bit and when sodium goes down to a certain point, it can be very headache-provoking," Saper said. 

Suza Scalora/Photodisc/Getty Images

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A similar effect can happen if people drink too much water. Over-hydration can also throw off the balance of electrolytes, which can lead to a migraine.

Dehydration often occurs during extended periods of exercise, but physical exertion on its own can also trigger migraines.

Lazy Days of Summer

"Migraines can happen at a time of a let down from stress. When a person has a chance to relax, it may be the time for headaches to happen," said Dr. Andrew Charles, director of the Headache Research and Treatment Program at UCLA's Geffen School of Medicine in Los Angeles. "The first days of vacation or the start of the weekend are common times for migraines to occur."

Changes in sleep patterns can also cause migraines in some people. The longer days often cause people to go to sleep later than usual.

"People stay out later and sleeping patterns tend to change," Saper said. "People with migraines don't shift time zones well on vacation or tolerate different sleeping patterns well."Migraines can also be caused when people don't eat at their normal times, which tends to happen in the summer. Maintaining consistent sleeping and eating patterns is key, he said.

"People stay out later and sleeping patterns tend to change," Saper said. "People with migraines don't shift time zones well on vacation or tolerate different sleeping patterns well."

Migraines can also be caused when people don't eat at their normal times, which tends to happen in the summer. Maintaining consistent sleeping and eating patterns is key, he said

Environmental Factors

Summer allergens, such as grass pollen, can also trigger migraines."There are also some studies suggesting that differences in the levels of pollutants may be correlated with frequences in migraines," Charles said.

Humidity can increase the levels of some allergens in the environment and can also cause migraines in other ways.

"Humidity can trigger migraines because when it's humid, you can pick up odors you wouldn't smell on a less humid day," Saper said.

Other summer migraine triggers include the heat, which can cause changes in body temperature; alcoholic beverages and higher altitudes some people might experience when they go camping.

Experts recommend that migraine sufferers know what their triggers are and avoid them if possible, but say even when all precautions are followed, migraines might still strike.

*http://abcnews.go.com/Health/summer-migraine-triggers-real-pain-sufferers/story?id=13970666

Service Dogs for Invisible and Visible Illnesses

My dog Dixie

When most people think of service dogs they think of guide dogs that assist the blind.  Oh, I know service dogs can help with more than the blind but I didn't have a complete picture. Now my own dog, Dixie, she helps me out as a informal service dog; she is not certified therefore I can't use her help in public. Dixie has had not any formal training; however, she helps me with getting up from a chair, helps me up and down the steps, and she monitors me when I'm really ill (she knows to pester others in the house if I need help). She has helped me get off the floor a time or two (Yes, I hear you, very funny, "She's fallen and she can't get up). It wasn't until I met my daughter's friend, Elise, that I began to more fully understand just what service dogs can do. 

Elise is the Disability Advocate and Volunteer Trainer at Phoenix Assistance Dogs (PAD). She also has a seizure alert dog. Elise began to open my eyes as to what all service dogs can do. By legal definition, a service dog is one specially trained to lessen the effect(s) of a disability. This includes — but is not limited to — disabilities such as: visual, hearing, mobility, seizure, and "invisible" disabilities that are debilitating, but not necessarily obvious to the public. 


Although guide dogs have been use since the mid 16th century, in the 20 years service dogs have expanded their roles. Beside guide dog work, they can help with balance issues, mobility and wheelchairs assistance, hearing, seizure, and migraine alert, they can calm those dealing with anxiety disorders, and assist those with dissociative disorders to become grounded. 


There are close to  180 organizations that train service dogs for those who are disabled. Some are non-profit and do not charge for their dogs but others are for profit. The bad news is that the waiting lists for the non-profit dogs tend to be long. It often takes 2 - 5 years for your name to come up. Dogs that you get through these programs are thoroughly trained and screened. These programs offer follow and continue to help re-certify the dog on a yearly basis (this is an option not a requirement).


It is sad to say that not all dogs make it through the service dog program. Some dogs just aren't service dog material for one reason or other. There are trainers that can assist you to train your own dog; however, you run the risk of choosing a dog that may wash out. And then what will you do. If you want a service dog, you will need to carefully consider the pros and cons of self training program vs a program trained dog.

I know that I don't want to risk getting attached to a dog and then have to give it back. So I don't believe the owner training program is for me; physically I can't handle it either. I am involved in a program where I can choose either the owner training program or I can have them raise the puppy for me. I know for this particular program the waiting list is about 18 - 24 months for a program trained puppy. Right now I am fairly certain I'll have them raise the dog, but I'll keep my options open.

Elise and her service dog Burke

Life is Hard

Let's face it whether it is a chronic illness, physical or mental, visible or invisible or you are permanently disabled, life is hard. Who isn't feeling the pinch of the tough economic times that are, literally, all around the world? Many families (it almost seems, most families) are dysfunctional. This song has brought me comfort when I have felt hopeless and helpless. It is call "Life is Hard". It is sung by Pam Thum. I found this lovely recording on YouTube.com, It helps me through when life gets too hard.

What People with Chronic Pain/Illness Don't Want You to Say

The video is entitled, Stuff Healthy People Say to Sick People, from YouTube.

Isn't it a shame the people who say these things probably will never get a chance to watch this video. Who says you can't encourage people in your social network to view this video? Maybe posting it up on Facebook might be the wake up call that people in your life need to hear so they learn to be more sensitive. Now if only some people in my life owned a computer...

Here is an article on a similar subject that my daughter found for me. What a shame we can't get this in the hands of everyone who is not in chronic pain or have a chronic illness. Please help spread this one around. It is from Psychology Today.

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

Even the well-intentioned often don’t know how to talk to the chronically ill.

Published on June 27, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold

The purpose of this piece is not to make fun of those whose comments are off the mark; most people have good intentions. I've written it partly because I hope it will make those of us with health difficulties feel less alone and partly because I hope it will help others understand how to communicate with us better.Each of the following comments has been made to me at least once since I became ill in 2001.


“Give me a call if there’s anything I can do.”
It’s highly improbable that this well-intentioned comment will result in my picking up the phone. You’ve put the ball in my court and I’m unlikely to hit it back, either because I’m too shy, too embarrassed, too proud, too sick—or a combination of the four. I’m not going to call and say, “Can you come over and do my laundry?” But if you call and offer to come over and do it, I’ll gratefully say, “yes”


“I wish I could lie in bed and watch TV all day long.”


It may sound like this couldn’t possibly have been a well-intentioned comment, but given the tone of voice in which it was said to me over the phone, I’m certain it was. I believe that the hard-working friend who said it was genuinely thinking, “Lucky you to have so much leisure time.” When she said it, I was still so sensitive about being sick—including being worried that people might think I was a malingerer—that tears came to my eyes. Then I wanted to scream, “You have no idea how it feels to be sick and stuck in bed with no choice but to watch TV!” Instead of screaming, I mumbled something and got off the phone as soon as I could because I could feel the sobs coming—as they  did as soon as I hung up.

 “Disease is a message from your soul, telling you that something is wrong with your True Self.”


This is an excerpt from one of dozens of emails I’ve received from people trying to diagnose and/or cure me. I must admit that I have no idea what that sentence means. Are the soul and the True Self different entities, and the one that is okay is sending a message to the other one saying that something’s wrong with it? Bottom line: This is not helpful! Oh, and another person said she’d assist me to get my health back—free of charge—by showing me how to do soul retrieval. Sigh.


“The third cousin of my brother-in-law’s sister’s best friend had what you have and said she got better by drinking bottled water.”


Another sigh.

“Have you tried sleeping pills?”

Sleeping pills? Who hasn’t tried sleeping pills? Even healthy people do! Sleeping pills may be helpful for some people, but they are not a cure for chronic pain or illness. And while we’re on the subject of “Have you tried…” If it’s available by prescription, I’ve tried it. If it’s available as a supplement, I’ve tried it. If it’s available as a Chinese herb,I’ve tried it. If it’s available at all, the odds are very high: I’ve tried it. 

“Just don’t think about it.”

This comment left me speechless…but still thinking about “it.”

“Aren’t you worried that you’re getting out of shape from living such a sedentary lifestyle?”

Uh...yes. Thanks for reminding me.

“Have you Googled your symptoms?”

Let me count the ways.

“At least you still have your sense of humor.”

Thanks, but I’d rather be known as humorless but healthy.

*****

It would be so nice if the people who would like to be supportive would understand how much just being with you and standing by/with you means.