Ankylosing Spondylitis: All - Mayo Clinic.com

When I was finally diagnosed with AS ion 2009, I believe that I was typical in terms of the amount of time it takes to diagnose AS.  Recent studies indicate that it routinely takes between seven and ten years to diagnose the disease.  I want to link to a very good article about the disease, progression and treatment options, and to encourage you to follow the advice in the article:  write a careful, thoughtful, detailed summary of your symptoms, progression of symptoms, and any other conditions that may be present for you.

In my case, I was difficult to diagnose because as a result of significant joint injuries and a series of exceptionally invasive surgeries beginning when I was twelve or thirteen, I had osteoarthritis one would normally expect in a man seventy years old or more.  I had symptoms in the hands, feet, shoulders, lumbar back, cervical spine, hips and knees.  When I first saw a rheumatologist, the person found the history of surgeries, bone grafting, boring out of spine nerve openings, and combined with the x-rays that showed osteoarthritic changes, the rheumatologist stopped looking and told me that I would need joint replacement and that my problem was osteoarthritis.

Later on, as the fatigue and pain began to affect muscles and connective tissue like ligaments and tendons, I decided to see if perhaps the problem was metabolic.  I have hypothyroidism, and when I saw an endocrinologist a complete workup showed that many of my pituitary systems were far outside normal ranges.  After some evaluation and treatments, I was referred to a very experienced and exceptional rheumatologist named Steven Overman at the Seattle Arthritis Clinic.  The endocrinologist believed I had an autoimmune connective tissue disease.

Dr. Overman did a complete workup, and after evaluating all the data, was able to tell me that yes, I had osteoarthritis, but the main problem, causing the connective tissue inflammation, fatigue, hip, sacroiliac pain and the pain from back injuries and arthritic changes (many of the facet openings were being filled in with arthritic material, causing the nerves to be compressed as they exited the spine).  He also found osteophytes (arthritic bone spurs) at the point where ligaments and tendons attach to bone. 

Finally, after ten years of declining health, chronic pain that seemed to get worse every year, fatigue that made the travel and long hours of my executive job more and more difficult, I had a diagnosis and could begin treating the root problem.  The morning stiffness that lasted a couple of hours and sometimes more, the need to spend hours in a position that took the load off my spine and knees,  the poor sleep and frequent interruptions,  the increasing number of days when I was too fatigued and too sore, and somehow less able to concentrate…all could now begin to be treated.

I encourage you…don’t give up.  Don’t assume you are just a wimp (I did!).  Don’t give up when your first (luckily my Internist, Dr. Warren Fein, also saw the deterioration and was willing and helpful in pursuit of the cause(s) of my declining health and possible treatments – I’ll forever be grateful for such an exceptional GP to help me though my struggle to find a cause for truly life-changing health changes) or second or tenth doctor doesn’t get you some improvement.  You have to be your own advocate and keep on working at researching your symptoms, finding possibilities and investigating them with whatever doctor you can at that time.  The AVERAGE time to diagnosis for AS is 7-10 years.  Don’t give up until you find some relief.  Some AS patients are able to do amazing things after treatment – I know of one who ran a 5k.  I am still very much in a place where I have trouble getting around, and have to conserve my energy every day, just to be able to do the most important things.  But I have a path to a better quality of life, and I want that for myself, and for you, if you suffer from  AS. 

Please read the article below and start your own trek toward a better life.

Ankylosing spondylitis: All - MayoClinic.com

Technorati Tags: Ankylosing Spondylitis,AS,Mayo Clinic,Arthritis,Medical research,Arthtitis Research,Arthritis Experiences,Steven Overman MD,Seattle Arthritis Clinic

Don’t be Afraid to See What You See*

I’ve always thought that this brief sentence was profound.  So many times we are afraid to see things as they really are, whether because of fears, ideology, embarrassment,whatever.  What is really happening will go ahead and happen whether we acknowledge it or not, and sometimes the consequences of avoiding or ignoring what is happening can be pretty serious.  An example:  Well, most people who have heart attacks don’t acknowledge that they are having a heart attack.  Perhaps they are afraid of dying, or afraid that it will be embarrassing if they call an ambulance but turn out to just have gas.  I’m sure there are myriad reasons why we don’t acknowledge the reality that we are having a heart attack,but the reality is that about half of us deny that little voice inside us when it says “You’re having a heart attack.”  This advice, taken to heart and applied just to heart attacks would save thousands of lives each year.  

In a more ethereal, but no less important way, it is impossible to achieve deep personal emotional development without accepting this simple idea.  Psychologists understand that we are only able to fully develop as people, parents, artists, athletes, leaders, etc, if we are willing to look at ourselves and accept the truth of what we see.  Introspection is the essential ingredient in personal development, and in achieving our potential in most every activity or role we play in life.  Without the willingness to ‘see what we see’; to examine our actions, motivations, beliefs and desires, we simply cannot adapt them, or adapt our behaviors to achieve better results or deeper fulfillment, happiness, etc.

I believe that most of the time, we know what our failings and shortcomings are, just as we know most of the things we need to do to accomplish the things we desire.  Sometimes we choose to acknowledge these, and we are able to improve upon them and achieve, or find deeper personal fulfillment.  To a large extent the role of a therapist, coach, clergyman, etc., is to facilitate in us a greater level of introspection.  I know that they also provide information that helps in our development (dribble the ball with your fingertips, for example), but a large part of what they do is help us to face our fears and see what we see.

“Accept the things to which fate binds you… Love the people with whom fate brings you together…do so with all your heart.”   ---Marcus Aurelius

 

Technorati Tags: Philosophy,interospection,acceptance,Marcus Aurelius,Ronald Reagan quotes

*-I am only giving attribution for the quote here at the end because I wanted to avoid the extraneous prejudices and resulting sidetracking of the idea that various opinions of the person to whom this quote is attributed would have caused.  The quote is attributed to Ronald Reagan.

                                                 

Empathy Deficit Disorder

Technorati Tags: Empathy Deficit Disorder,Psychology

adapted from the Toronto Star (link at the end)

According to Dr. Orlaith Fraser's , modern humankind's collective inability to genuinely identify with others has lead to a new problem: Empathy Deficit Disorder.

Empathy is often misunderstood to be sympathy, but empathy is quite different from sympathy.  The original German term  for empathy means "feeling into" as opposed to "feeling with."  Empathy is not merely realizing that someone else's feeling would be pleasant, or unpleasant.  That's sympathy.  Empathy is understanding what they are feeling, and relating it to times in your life when you may have felt similarly.

In Liverpool, Dr. Orlaith Fraser's fascinating study of chimps and conflict resolution shows that our closest evolutionary ancestors almost certainly are capable of empathy.   The research found that after a display of aggression, other chimps would often console the victimized chimp with hugs or kisses.

"This study removes doubt that consolation really does what the term suggests: provide relief to distressed parties after conflict," Dr. Frans de Waal of the Yerkes Primate Center at Emory University in Atlanta told The Associated Press.

"The evidence is compelling and makes it likely that consolation behaviour is an expression of empathy."

So how can humans make each other feel better?

There is an art to empathy.

In his new book Trading Places, Dr. Les Parrott, a clinical psychologist and his wife, Leslie, a family therapist, advise readers on how to build a better marriage (and, no, it doesn't involve marrying someone with the same first name).

Parrott says he's often fantasized about being able to "literally hand out a box of mutual empathy – the revolutionary tool for instantly improving a relationship."

We caught up with him by phone for a game of five questions.

Q: Where has our empathy gone?

A: Any time you're under pressure or stressed or hungry or angry, you're not going to be empathetic. What most people don't understand is that empathy involves both your head and your heart.

And most of us think we're being pretty generous when we do one or the other, when we analyze or sympathize, and that's only halfway there.

Q: What are the signs of Empathy Deficit Disorder?

A: The primary indicator is they just can't seem to recognize your perspective or another person's perspective.

Empathy is that ability to put yourself in somebody else's shoes and imagine what life must be like to be in their skin.

Q: Are women naturally more empathetic beings?

A: Research shows women will fall into sympathizing far more frequently than men and men tend to fall into analyzing far more frequently than women. It's not that either gender is necessarily better at empathy.

Q: Can a person learn empathy?

A: Absolutely. What we discovered in our research is that there are skills that people can pick up on.

There's a school of thought in psychology that says awareness is curative.

Once you become aware of your social style, the more you can do about it.

Q: Is there one social relationship where the empathy deficit is most apparent?

A: Marriage is by far and away the most likely place. We don't work at it very much; that's why people get stuck in ruts.

Research shows 90 per cent of the things we struggle with in marriage would be resolved if we just saw things from the other person's perspective.

Diana Zlomislic

LIVING REPORTER

Toronto Star

http://www.healthzone.ca/health/article/451439

You Don't Understand. No, I Think it is YOU Who Does Not Understand...

“ When I was 5 years old, my mom always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down “happy.” They told me I didn’t understand the assignment and I told them they didn’t understand life. "

The author is unknown to me, as I read the quote online and no attribution was given.  Whoever it was, it was a wonderful bit of insight and one many of us could do with a reminder of.

Technorati Tags: Quotes,wisdom quote,insight

The Quality of Life is in the Quality of Living

"Dance like no one is watching. Sing like no one is listening. Love like you've never been hurt and live like it's heaven on Earth."
                                                                     —Mark Twain

Sometimes, if you are like me, it takes a simple thought, simply expressed to cut through the sheer speed of living.  With so many things to do, and so much information, and so much to buy and operate and watch and read and listen to, it can be pretty easy to be swept up in doing things, owning things and being active.  What's wrong with that?  Well, nothing in and of itself.  We must own some things to live, must we not?  We must do some things, and take action.  Still, it is all too easy anymore to find ones' life reduced to an endless high-speed string of activities, consumption and belongings.  We pursue the 'good life' in the form of these things, and at least some of the time we come unmoored to the simplest truths in life.  In having so much, and doing so much, and taking care of the many obligations that come from doing and having so much, we can easily begin to equate these things (consciously or otherwise) with happiness and success in life. 

When I see a sentence or two like this quote from Mark Twain, I am reminded that it is not the volume of belongings, or activities, or information that brings me satisfaction.  The happiest and most satisfying moments in my life revolve around people - family, friends.  They revolve around time - time to interact with them, share and make memories with them.  They depend on good health to enjoy, and and opportunity to be together. Often enough, the pace of life actually weakens the experience of family and friends - draws off some of the depth from the interaction.  We can become distracted and miss the moments that afford us so much of the satisfaction we find in life.  When we are distracted, self conscious, only partially engaged, though we are able to be together, we are not quite together. 

When we have the chance - time, health, companions - to really live, it is good advice indeed to value it.  And more, to be uninhibited about taking advantage of the moment and living it.  No matter how much we have, or how much we do, the quality of our lives derives far more from how we live our moments than where we live them, or what we own.  

Technorati Tags: Mark Twain quote,quality of life,self help

That isn't Fair!

"Expecting the world to treat you fairly
because you are a good person
is a little like expecting the bull not to attack you
because you are a vegetarian." --Dennis Wholey

"That isn't fair!" I am often surprised at myself when I use this phrase. I am even more often surprised with others when they say something along those lines. It is not surprising coming from children, I suppose, for as children we have not yet learned the truth about fairness. As children we can still yet believe that fairness will govern our lives, though it doesn't take many formative years to begin bruising that belief. Usually it is adults that surprise me when they speak of things being fair or unfair. Of course, I understand our desire to apply fairness as a concept to our lives, but by now most of us have realized that fairness is more the exception than the rule. Fairness is an ideal, it is something to strive for, but for the most part it is only an external and subjective judgement and not a governing property. More simply put, fairness is something we all wish for, and many of us strive for, but most of the time life isn't fair.

Perhaps this impulse is vestigial; a soft lingering whisper down the years from our childhood to our adulthood. As parents we often tell our children to 'play fair'. And we should, no doubt. But as parents we also watch our children come gradually to the same dawning practical realization - life ain't fair. There are bullies in this world. Some kids are smarter than others. Some don't have enough food or a warm coat and others think nothing of wasting extravagant quantities of everything. There is cancer and war and natural disaster. There is crime and abuse. And no matter what some television evangelist says, bad things happen to good people too. If the wages of sin are death, it is just as sure that the wages of life are inequity. Life ain't fair.

Yet when I listen to the words people choose when discussing events in their life, it is surprising how often I hear people express surprise and even shock at how unfair life can be. On some level, despite intellectual awareness that life cannot be fair, we hold on to a belief that it is. We express surprise when life is not fair to us or others, and if the issue is upsetting enough we organize to protest or raise money to fight back, or try to pass legislation that mandates fairness. Though we know in our hearts that life ain't fair, we feel a strong need to fight for fairness. What kind of world would we live in if we could not even cling to the hope that life will deal fairly with us?

It seems to me that this dichotomy in our zeitgeist is healthy in the abstract. It gives us hope, and allows us to balance our perspective between a grim realism and a grounded optimism. The idea that we can expect life to be fair is so clearly wrong that many of the big disappointments in life have such an impact because we expect 'fair' treatment when we can have no reasonable expectation of fairness. But at the same time, were we to choose to expect life always to be unfair we'd probably never leave the house. Somewhere there is a good balance between the realistic awareness that fairness is not to be expected and the hopeful expectation that people will at least try to be fair to one another. And in practice, the only fairness we can really bring about is our own fair treatment of others.

"You must be the change you wish to see in the world." --Mahatma Gandhi