And Now For Something Completely Different...

September 22, 2014

Dear Constant Readers,

As the comedy troupe, Monty Python, liked to say, "And now for something completely different."  As with Monty Python, so it is with this "One Writer's Life."  It's time for something completely different!

As you know, for the past several posts I have been focusing upon my life with Chronic Fatigue Syndrome.  And while I do intend to revisit this topic in the future, I feel that is time to shift the focus of this blog somewhat.

In a post earlier this year, I mentioned that I am working on two different books.  Both of these books are memoirs.  One is a spiritual memoir about the past 13 years of living with Chronic Fatigue Syndrome.  It is tentatively entitled, "The Reluctant Ascetic: A Journey Through the Desert of Chronic Illness."  The four blog posts, "My Very Own Personal Apocalypse," may well form the first chapter of this work.

The other book that I am working on is about my own coming-of-age story set in the 1960s and early 1970s in Kingsport, Tennessee - my hometown.  The working title for this memoir is, "The Confessions of a Second Grade Failure."

I have spoken to one literary agent in New York who is interested in both books.  She has requested an outline of the book on chronic illness and the first 100-pages of my coming-of-age memoir.  While I am both honored and excited about her interest, I realize that I need some help in amassing the materials she has requested.  Specifically, I need your (the constant readers) help!

How can you help, you might ask.  The answer is - by serving as my designated readers as I go about writing those first 100-pages of my book on growing up in Kingsport.  Every writer needs someone in mind who serves as the "ideal reader" when writing.  I would like you, constant readers, to serve in this capacity for me.

Here is what I propose: Beginning this week, my blog posts for the next month or so will serve as

potential chapters in progress.  While I do have a chapter outline, my posts may not necessarily follow that outline to the "t."  Though my intention is to begin somewhat chronologically, I rather doubt that my writing will continue that way for long.  So be prepared as I jump around a bit in my own life story.  Just so you know, the period of time that I am covering is 1960-1973.  If this is to work, I need the flexibility to go with those topics (and potential chapters) that are freshest and for which I am most prepared to write.

So, as the Bible says, "gird your loins!"  In other words, buckle up and get ready for a rollercoaster of a ride in the next month or two.  I have a pretty good idea of where we are going together, but the map that I am following is not altogether clear and the directions somewhat hazy.  But if you stick with me, offering me occasional words of encouragement and sometimes even giving me actual feedback, I promise you that at least you won't be bored!

So how about it?  Are you with me?  If so, then let's get this ride cranked up and raring to go.  Let's get this book written!

Cheers,

Stephen

Some Things I Have Learned From and About Chronic Fatigue Syndrome

September 19, 2014

Dear friends, family and constant readers,

I thought I would wrap up my recent writing on chronic illness with some things that I have learned in the last 13 years from my struggle with Chronic Fatigue Syndrome, or have learned about the nature of the illness itself.  This is not an all inclusive list - merely some gleanings or insights that have been important to me in managing my illness.  So without any further adieu, my list:

* Modern medicine doesn't know everything

As I reflect on my own attitudes toward the medical community when I first became ill, I recognize a certain naivete that was present on my part.  I held doctors in great esteem, and their knowledge of the human body and what ails it as vastly superior to my own.  There was a clear hierarchical relationship which I presumed.  When you are sick, you go to the all-knowing doctor who provides you with an answer as to what is making you ill, then gives you a prescription for medication that will make you well.  While I still respect doctors and specialists, and continue to hold them in esteem for the work that they do, I have nonetheless taken them off the pedestal upon which I had placed them and see them as I do the rest of us - very human, skilled but not all knowing and sometimes fallible.  Because of my personal experience, I view modern medicine and its technology as still insufficient and, at times, rudimentary and primitive at best.  There are still so many illnesses and diseases which exist that even the most skilled and knowledgeable doctor doesn't have a clue about how to diagnosis, treat or potentially cure.  As one of my doctors put it, "Even the most modern of medical technology has not caught up with some illnesses, leaving us to grope in the dark at present."  In some respects, I wonder if our descendants will look back at many of our treatments for certain illnesses with the same distain that we have for the bloodletters of the 18th Century and before.  That said, I am glad that I have the doctors I have.  I do believe that I am receiving the best the medical community has to offer.  The problem is, that in my case, the best is still not good enough.

* No two cases of CFS are the same

Technically, Chronic Fatigue Syndrome is not a specific illness.  It is a "syndrome."  This means that it is a medical catch-all for something not otherwise diagnosable.  As a syndrome, it is merely a collection of related symptoms which occur together in a non-random way.  This is one reason that it took me just over a year to be diagnosed - and why it takes other people many years to be diagnosed correctly.  I had a variety of symptoms that fit quite a number of other illnesses.  Those other illnesses had to be excluded by medical testing.  Once those other illnesses were ruled out, only then could I be positively diagnosed as having Chronic Fatigue.  Therefore what makes me a CFS patient is that I experience a cluster of symptoms which are very similar to other people also diagnosed with this disease.  But there is yet another complication - CFS does not present exactly the same in any two given patients.  We may have overlapping symptoms, but the way that CFS affects us would be unique to each.  Therefore the treatment plan will differ with each patient.  That is why it is very important that I work closely with my doctors and that I understand what is going on in my own body.

* Routine is my friend

If you were to live in my house shoes for more than a day, you would probably find yourself extremely bored.  That's because most of my days look very much alike.  I have discovered in the self-management of my illness that routine is very important to maintaining my health and general well-being.  If there is too much chaos or change, I just don't do well.  It's not an emotional reaction, but a physical one.  My symptoms worsen and I am overwhelmed by fatigue, making it necessary to spend a great deal more time in bed resting - something I really don't like to do.  So to avoid this, I stress routine.  I get up about the same time each day, eat at similar times with similar foods, take naps approximately at the same times, and go to bed roughly at the same time each night.  It's boring, but it works.  I have a semblance of a "normal" life when I maintain my routine.  When I can't or don't maintain this necessary routine, my life and health tend to spiral out of control.

* Just because I look good doesn't mean that I feel good

People with CFS are often told how good they look.  The assumption is that if you look good, then you must feel good and therefore are growing more healthy.  Nothing can be further from the truth.  As a person with CFS, I can rise to the occasion and pull myself together so that I appear rather healthy, but that doesn't mean that I am.  I am not healthy.  I am a person with a chronic and long-lasting disease that has ravaged my body and life.  People tend not to see those times when the bottom has fallen out of my life and when the illness is at its worst.  The reason that folks don't see me like that is because I don't let them.  I cloister myself at home, take care of myself and try to feel better until I return to a more even keel.

* Listen to my body

Since onset of CFS, I have become very good at reading and listening to my own body.  If I don't, who will?  I need to be aware of what I am feeling and experiencing so that I can deal with it before it deals with me.  For example, I notice that when I feel suddenly bored - unable to watch TV, read a book, surf the web, or write - that I am just very tired.  If I continue in my activities, the boredom and fatigue only worsen.  Therefore, when I feel boredom coming on, I recuse myself from whatever I am doing and go lie down.  That may be taking a nap or just resting until I am somewhat refreshed.  Once rested, I can resume my activities most of the time.  Another example is when I have cognitive issues.  I call these moments as having "brain fog."  I just can't think clearly and my decision-making is impaired.  The only recourse is rest.

* Get adequate sleep

One of the central issues of people with CFS is that the rest we do get is unrefreshing.  We may get 8 hours on a given night, but we may awaken feeling as though we haven't slept at all.  Getting the right kind of rest and sleep is absolutely essential to me.  Sleep disorders have plagued me since the beginning of my illness.  There have been times of way too much sleeping.  And times of way too little.  And even when I got the correct amount of sleep, it wasn't of the refreshing variety.  So I have worked with my doctors to achieve as restful a night as I can.  With the help of sleep medication, good ear plugs, a good pillow and proper mattress, and generally maintaining good sleep hygiene (i.e., no TV in the bedroom before sleep), I have been able to achieve a relatively deep level of sleep and rest much better than in the past.  It's a tricky thing to do, but is so important to how I feel the next day.

* Avoid stress

Any kind of stress - be it physical or emotional - can be a trigger for my CFS symptoms to flare.  My routine often protects me from stressors, but only so much.  I must constantly evaluate whether something - an event or activity - will cause undo stress and make me sicker.  Prevention is the key for me.

* Engage in moderate exercise

I confess that I live a very sedentary lifestyle.  I know that it is not good for me and that the long-term consequences may be very detrimental.  But the fact is that physical exertion can also be a trigger for CFS.  If I over-do-it with my activity, I can relapse quickly and be out of it for several days.  I realize that for my long-term well-being, I must stay as active as I can, but as in all things - with moderation.  If I feel up to it, I may walk around the block on a given day - or if I'm feeling really good, I may walk three or four blocks.  The length of my walk is not the measure of success, but the fact that I am able to get outside and walk at all.

* Stay healthy otherwise

Having one chronic illness doesn't mean that you are immune from other diseases.  In fact, having CFS may highly increase the chances of getting other co-morbid illnesses.  I know this because it has happened to me.  Because I have to deal with CFS and other medical complications, I must work to stay as healthy as I can otherwise.  I take the flu shot every fall.  I've had the vaccine for pneumonia.  I now eat very well and nutritiously.  I walk as I am able.  I go to my doctors at least every three months to be evaluated.  I take prevention very seriously.

* Alone, but not lonely

Community and friendship is important to any person with a chronic illness.  I can joyfully say that I have a number of important friendships in my life.  My connection with these persons is absolutely necessary for me to cope with living in illness.  Because of the nature of my illness, I am alone a great deal of each day.  I may go two or three days without seeing another human being, save my wife, Lynn.  Living that kind of life can be depressing in and of itself.  I have always needed people in my life, especially so now.  But I need people who can accept me with my illness as a factor in our friendship.  It was disappointing to me that a number of people whom I considered close friends disappeared from my life after I became ill.  I can only hazard a guess, but I believe that they were uncomfortable with my illness and were at a loss to know how to talk to me and sustain our friendship.  I can understand what they might have experienced, but I wish that they had stuck with me despite the awkwardness.  I could have really used their love and support.  But as I said, I still have quite a few friends who have indeed stuck by me through this awful and debilitating illness.  Each day I am grateful to have them in my life.

* Keep mentally stimulated

Because CFS has a detrimental effect on cognition, I must stay as mentally stimulated as possible.  I frequently find this in good conversations with others, challenging reading, maintain interesting hobbies and activities, writing these blog posts.  These sorts of things challenge me and also enable me to have the semblance of a normal life.

*  Be an active patient, not a passive one

I cannot stress it enough - be your own best advocate.  Take ownership of your health care.  Work with your doctors as a partner in seeking what is best for you.  Do not be passive or assume that because someone has a "Dr." in front of his/her name, that they have all the expertise and knowledge.  You must be the expert on your own life and health!

* Be flexible in planning ahead

As I mentioned earlier, routine is my friend - but that doesn't mean that I don't want to engage in special activities outside of that routine.  For example, I recently went to my 35th high school reunion.  It was important for me to go, but I knew that I had to plan ahead or else my symptoms would spiral out of control.  So I factored in appropriate time for naps.  I adjusted my medication times so that I could function at certain events.  Because I planned ahead, I ended up having a great time and enjoyed my visits with people I have known since elementary school.

Well, that's all the insight I have to offer for today.  I hope that this post, as well as my recent series on CFS, has been helpful to you in understanding what it is like to have a chronic and long-term illness.

To Learn More About Chronic Fatigue Syndrome, check out:

The Center for Disease Control - CFS

The Mayo Clinic - CFS

Solve ME/CFS Initiative

If you have questions about Chronic Fatigue Syndrome or my experience of it, please don't hesitate to contact me!  Also, be sure to leave a comment on the blog's homepage at the end of this post.  I truly value and desire feedback!

And please remember to register for the Kindle contest going on this month.  A new Kindle will be given to an individual from among those who subscribe to this blog via email during the course of this month (September 15-October 15).  Also, for currently subscribed readers, there is a contest to win a $25 Amazon gift certificate for encouraging new readers to subscribe.  For more information and details about how the contest works, see this posting.

Cheers,

Stephen

My Very Own Personal Apocalypse: Conclusion

September 17, 2014

Dear patient readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became sick with a mysterious illness and how it changed my life.  In Part 2 and Part 3, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In this concluding post, I describe exactly I came to be diagnosed with Chronic Fatigue Syndrome.

I came back to Richmond in late November 2002 from yet another trip to Kingsport, Tennessee, overseeing my father's estate.  Because of the stress of my father's death and being appointed executor of his estate, I was extremely ill and knew that I had to find a specialist who could finally help me.  I sat at my desk in my home office combing through all my own research that I had been collecting for the past year.  I had newspaper clippings and internet articles about anything that might tangentially relate to my illness or to the symptoms I was experiencing.  I was looking for a connection that might help me know who to contact at Johns Hopkins or Duke.  I remember pulling a series of articles on the anthrax attacks from September and October of 2001.  If you will recall, following the events of 9/11, a series of anthrax-laced letters were sent to several prominent people.  The letters were processed through a post office sorting center in Washington, D.C.  As a result of the attack, five people were killed and 17 others were infected with anthrax.  The Washington Post covered the story and the effects on the victims both initially when it happened, but also through follow-up stories over the course of the year.  My main interest in this terrible tragedy was the striking similarities between many of my symptoms and those of the anthrax victims.  In the fall of 2002, there were a series of stories in The Washington Post about how the survivors of the attack were not getting well.  Their symptoms lingered and even worsened.  I wondered if there might be a connection to my illness.

While it may now seem somewhat paranoid, I felt at the time that I couldn't rule any possibility out.  In the

Anthrax spores

next day or so, I began to research whether it was even remotely possible for me to have been infected with anthrax spores.  I hadn't been to D.C. in some time, so proximity was ruled out.  I didn't work at the post office sorting center, either.  Could it have been possible that I had received mail contaminated with anthrax, I wondered to myself.  I remember the panic of the news media in the fall of 2001.  There was talk that the anthrax may have been militarized (it had not) and whether even a few spores could infect a person.  However unlikely this scenario, I had to know whether there was any possibility that I had been infected.  I went to see the post master at our local post office.  I explained my situation in brief and then asked him whether any of the mail which had been sorted in D.C. could have come to Richmond - and more specifically, to my mailbox.  He said that it was certainly possible.  His post office routinely received mail from the affected facility, and mail was sent out from that facility before the anthrax was detected.  But, he concluded, he felt it highly unlikely that scenario happened.  Possible, but not probable.

I returned to my research at home, reading the newspaper articles more closely.  A particular doctor was mentioned in a number of the articles.  One article, in particular, stood out.  This doctor had treated a postal worker who showed every symptom of anthrax poisoning, but all the tests read negative for anthrax infection.  He clearly was a victim too, but no test could conclusively prove it.  This doctor personally treated two of the anthrax patients and was consulted in many of the other victims' cases, becoming somewhat of an expert on the illness following the attacks.  "I need to know more about this doctor," I determined.  Through an internet search I discovered that he was a professor of internal medicine at Johns Hopkins and head of family medicine at Sinai Hospital in Baltimore, Maryland.  Here was the connection I had been looking for - this was the doctor I needed to see.  He teaches at Johns Hopkins.  He works with patients who have perplexing illnesses.  This was my guy!

I called his office the next day, explained my situation and asked for an appointment.  I was very nervous about doing this.  After all, he is this important and well-known physician, and I'm just another patient asking for a moment of his time.  Much to my surprise, I was given an appointment during the first week of December.  I was elated that he would be able to see me in such a short time frame.  His office manager said that I would need to do some work to prepare for my visit.  I would need to gather up as many of my medical records from as far back in my life as I could, as well as test results, x-rays, MRIs, etc.  I needed to have them mailed directly to him so that he would have time before my consultation to build a comprehensive medical history and, in general, become familiar with my case.  Over the next couple of days, I did as instructed.  I even contacted the pediatrician who had seen me as a child.  Those were the only records that I could not get.  They had been destroyed when a basement file room flooded.  But other than that, he would have a very complete overview of my medical history from young adulthood on.

On the appointed day in early December 2002, Lynn and I drove from our home in Richmond, Virginia to Sinai Hospital in Baltimore, Maryland.  It took three hours to get there.  When we arrived, we didn't have to wait very long before the nurse escorted Lynn and me back to an examination room.  She told us that the doctor was still reviewing all the records that I had sent and would be with us shortly.  Lynn could see how nervous I was.  I was worried that once again nothing would be found.  I was equally nervous that something serious would indeed be found.  I didn't like either option, but I knew deep within my soul that I needed to come away from that visit with a diagnosis, a name for this thing which had invaded and disrupted my life so completely.  I wanted to know the enemy.

Finally, the doctor came in.  He was just a couple of years younger than me.  He engaged us immediately.  The first thing he said was that I didn't have anthrax.  Though I had never been tested for it, he could tell from looking at my recent lung x-ray and blood tests that anthrax could safely be ruled out.  He proceeded to tell me that after reviewing my records, we could rule out quite a number of diseases and disorders.  In fact, it was his conclusion that all of my extensive testing left him with only one logical conclusion - I had what is most commonly referred to as Chronic Fatigue Syndrome.  It was known by other names, but this was the most familiar usage in the U.S.  This diagnosis, he told us, did not have a medical test to detect it.  A diagnosis could only be made when all other possibilities were excluded - which is what my previous testing had accomplished.

Chronic Fatigue Syndrome, he told us, has no known cause nor does it have a cure.  It is like an autoimmune disease in that something triggers the body's immune system to react and fight a perceived disease or infection - but one that cannot be found.  Whether it is invisible to current medical technology or simply infects the body and quickly moves on is unknown.  The key thing is that the body continues to react and literally attacks itself, like say, Lupus.  But unlike a disease such as Lupus, Chronic Fatigue does not damage the body.  In other words, I wouldn't die from it.

"How do we treat it then," I asked.  He answered that there was no treatment for the illness itself per se, but you could treat the symptoms to alleviate the way it manifests itself.  He then went on to suggest a number of medications.  He said that I would need to work with my physician and psychiatrist in Richmond to discover which medicine regimen would be best for me personally.  No two Chronic Fatigue patients are exactly alike, and each must be treated individually in a way that is unique to them.

"How long will I have this illness," I asked.  He said that there was no way to determine that.  Some percentage of patients do recover - maybe a third.  Another third may spend years with the illness waxing and waning before there is improvement.  And then there is about a third of people who do not recover and with whom the condition only worsens.  In his experience he told us that if you do not recover in the first five years after onset, then it may take as long as 20 years for the disease to burn itself out.  I was stunned!  20 years?  I'd be 62 by that time.  I'll be nearing retirement, I thought.  So what about work, I wondered aloud.  Could I still keep working.  Sure, he said, if I felt up to it.  I should try to stay as active as possible while I can because there may come a day when that is no longer an option.

By the time my appointment was over, he had spent nearly two hours with us.  He was extremely thorough.  He offered some wise counsel about how best to live with this condition.  With wet eyes, I thanked him.  He had given me something that no one else had been able to give - a name.  I now knew what my disease was.  I knew my enemy's name.  I was determined that day, and every day since, to fight this enemy and not give one inch of ground.  And so we have fought for 13 years in a relentless war over what would determine the course and content of my life.  I haven't given up yet, nor do I intend to.

(Well readers, this concludes my story of how I became ill and the process I went through to be diagnosed.  While a year may seem like a long time to find out what is making you sick, I know too many others who have this same disease and have gone years upon years before being properly diagnosed.  I was fortunate.  I had good doctors who were open to my own involvement in my diagnosis.  For the most part, they didn't give up on me, nor I them.  I was persistent.  One lesson that I have learned from this process is that one cannot be passive in his or her own health care management.  You must be proactive and work as a partner with your physician to fix what ails you.)

Peace,

Stephen

My Very Own Personal Apocalypse, Part 3

September 16, 2014

Dear friends, family and constant readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome and how it changed my life.  In Part 2, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In Part 3, I'll share with you how I was finally and properly diagnosed, and what it took to get it.

When last I left off, my friend and psychiatrist decided to refer me to a colleague who was both a practicing psychiatrist and a physician, believing that with expertize in both mental and physical illnesses he would be able to accurately diagnosis my malady.  This was in the winter of 2002.  I had been ill for approximately 5-6 months at this point.

An appointment with this new doctor was set.  Copies of all of my most recent medical records were sent to him so that he could review what had been done thus far.  His practice was affiliated with the Medical College of Virginia (MCV), which is associated with Virginia Commonwealth University in Richmond, Virginia, and considered one of the best hospitals in the Commonwealth.

I actually had previously met this new doctor.  He was a member of another congregation near my own, River Road United Methodist Church.  He had been a panelist on a congregation-wide discussion we had held on how to cope with the aftermath of the events of September 11th the previous fall.  He was affable and gregarious - very easy to like and trust.  In our first meeting, we reviewed my case together: the sudden onset, the continuing symptoms, medical tests performed to that point and the different diagnoses I had received.  He then suggested a new series of testing for both familiar and unfamiliar diseases.  This testing would occupy the rest of the spring and much of the summer.  

The pattern of this new testing was that I would go wherever he referred me and offer up some vital bodily fluid, permit myself to be poked or prodded or have some various organ or section of my body x-rayed or MIRed.  Then I would wait for the results of a given test.  In every single instance, the result that I would receive was "negative."  Test.  Wait for the result.  Negative.  Another test.  Another period of waiting.  Another negative result.  Etc., so forth and so on...

This left me with a sense of despondency that we would ever find out what was going on with my body.  I

clearly remember one day when I was being tested for multiple allergies at the Department of Rheumatology at MCV.  This doctor was an immunologist, who specialized in allergy-related diseases.  She tested me for various allergies by pricking my back with multiple needles (20 or more) - each a test for a different allergy.  After we waited the appropriate amount of time, she examined my back.  I could tell that something wasn't right by her expression - she had a wrinkled brow, for one thing.  When I asked her what she had found, she told me that the test must have been faulty in my instance because all the needle pricks were showing negative.  She then asked me if she could retest me.  That meant enduring another series of multiple needle pricks.  It wasn't without a degree of pain, but I reluctantly agreed.  She proceeded to test me one more time.  Once again, the results were completely negative.  I showed no indications of being allergic to any of the things for which they tested.  At this, my shoulders slumped and my voice cracked as I asked her, "Does this mean that I'm not really ill?"  She looked at me with a very serious expression and said, "Absolutely not!  It's clear to me that something is making you sick.  But it just may be that whatever that thing is, with our current level of medical technology, we may very well have no way of knowing what it is.  In another decade or so, we may look back at these very same results with new technology and see something obvious that we just can't detect today.  I'm so very sorry."

I returned to the doctor/psychiatrist who was directly my testing. He was completely non-plused. He had expected at least one positive result, but to have none was baffling to him - and to me. He had ruled out any psychiatric disorders as being the cause, so depression was taken off the table. And with all the medical testing, most other diseases had been excluded as well. He expressed a feeling that he had let me down. I assured him that no, he had not. He had done everything I could have asked. I felt that he had been extremely thorough. "So what now?" I asked. After thinking about it, he concluded that we wait for a few weeks or months to see how my illness progresses. If things were no better, he said that we would need to take our exploration to the next level. That would mean going to a research hospital, like Duke or Johns Hopkins. What I needed was a doctor and a medical community that routinely saw the non-routine. Maybe they could help.

So another season passed as I waited on my illness to make itself known. That November, near the first anniversary of becoming ill, my father died suddenly. I left for Kingsport, Tennessee, my hometown, to look after his affairs and see to his funeral. As it turned out, I was designated executor of his estate. That meant more trips to upper east Tennessee. I was overwhelmed - first by my grief of losing Dad, and then my the many responsibilities I had just been given, all the while my illness continued unabated. In fact, the stress I was under only served to exacerbate my symptoms. One night, I was sitting in my parents' kitchen, when I decided to call my wife, Lynn. That day had been particularly rough and I could hardly hold my head up. As I poured out my woes to her, I told her that I had come to a conclusion - it was time to go to a research hospital. I didn't care which one. But I desperately needed to see someone who could help me.

(Dear readers, I had hoped to finish this story in three posts. But as I write this, I realize that it will take one more installment to properly conclude my narrative. I don't like for my blog posts to be too long, so I feel as though I need to break this one up into two separate posts. Thanks for your understanding.)

Peace,

Stephen

Contest to Win a New Kindle By Subscribing to My Blog By Email

September 14, 2014

Dear friends, family and constant readers,

The Free Kindle Contest:

During the coming month - September 15 through October 15, 2014, I am holding a special contest to giveaway a brand new Kindle from Amazon.  All you have to do is subscribe to my blog, "One Writer's Life," which comes out approximately 2-4 times a week.

How to Enter:

Go to my blog's homepage, scroll down and look on the right-hand navigation bar for "Follow By Email."  Enter your email address in the form and click "Submit."  You will receive an email confirmation of your desire to be subscribed.  Be sure to confirm through the link included in the email.

You only have to subscribe once and your name will be entered in for the drawing.  The winner will be notified no later than October 18, 2014 by email, so please be sure that you register using a valid email address.  If the winner does not respond with his or her mailing address within 48 hours of the notification email being sent, the prize will be forfeited and an alternative winner will be selected (same guidelines apply).  The contest prize - the Kindle - will be shipped after a mailing address is provided.  Once the prize is claimed, the winner's name will be announced on this blog.

Start and End Dates:

The contest will be held from Monday, September 15, 12 a.m. through Wednesday, October 15, 2014, 11:59 p.m.

How the Winner is Selected:

The winner will be chosen completely at random from a list of all who subscribed to the blog in the period specified.

Rules and Restrictions:

You must be 18 years old to participate.  You cannot be a member of the author's immediate family.  Your mailing address must be in the United States.  All previous winners will be excluded from the drawing.

So What If I'm Already Subscribed?  What About Me - the Constant Reader???

Okay, here's the deal!  You, too, can enter a separate contest by encouraging NEW readers to subscribe.  Let

your friends and family know about this blog and the opportunity to win a new Kindle, and if they like what they see and read, encourage them to subscribe to the blog.  If you recommendation results in a new subscriber, you will be entered in a separate contest to win a $25 Amazon gift certificate.

The way that you enroll in this contest is that you must send me an email and let me know who you have helped to subscribe.  I'll need a name and an email address in order to confirm that this person has subscribed.  That information will be disposed of once the verification is made to protect privacy.  The same rules to win the Kindle also apply in this contest as well.

If you have any questions about either contest, please email me and I will respond.

Good luck to all!  May the best person(s) win!  And may our blog community grow!

Cheers,

Stephen

My Very Own Personal Apocalypse, Part 2

September 12, 2014

Dear friends, family and constant readers,

In Part 1 of this post, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome thirteen years ago, and how dramatically it changed the course of my life.  In this second portion, I will share with you the journey from becoming ill to diagnosis - i.e., knowing what exactly was making me so sick.

So I became seriously ill on Saturday, November 10, 2001.  Sometime the following week, I summoned up the strength to go see my doctor.  After examining me, he confirmed what I had first thought - it was just a bad case of the flu.  I was to go home, continue to rest, drink plenty of liquids and take medication for the fever and chills.  He said that if I did that, I would be as right as rain in a few days.  Well, that didn't work out for me so well.  I didn't improve.  I continued to feel as though hit by a wrecking ball.

The next week, I once more drug my weary body to the doctor's office.  The flu would have passed by now, so he was a little more concerned this visit.  He performed some tests and told me to continue to rest and await the results.  Not too long after that, he called with good news.  He had discovered the source of my malaise - I had tested positive for mononucleosis.  At age 41, I had a case of "mono," the dreaded "kissing disease." I knew that my parishioners would have some fun at my expense with this diagnosis.  But I didn't care - at least I knew what was making me so ill.

Gradually, many of my initial symptoms receded and I was able to return to work.  I still didn't feel well, but I was well enough to go about my regular routine.  With sheer determination, I made it through the seasons of Advent and Christmas - the busiest time for a pastor of the church year.  When 2002 arrived, my condition remained the same - feeling as though I still had the "tail end" of the flu.  Though better than I had been in November, my feelings of dis-ease in body and soul troubled me.  I just wasn't myself.  I wasn't getting better.  If what I had was indeed mononucleosis, I should have been better.  What if, I asked myself, it wasn't mono after all.  What if it was something else entirely?  I decided that it was time for a second opinion.

I had all my medical records sent to another physician who was a friend of mine and someone I trusted.  I went to him for a full examination.  He was very thorough.  He went through my medical records and personal history.  He double-checked my recent tests and results.  He re-tested me for mono, and also tested me for some other likely culprits, such as tickborne illnesses like Lyme Disease and Rocky Mountain Spotted Fever.  As for these latter tests, his reasoning was that since I had spent so much time outdoors the past summer and fall, I could have been bitten by a tick infected with one of these illnesses.  That seemed like a reasonable assumption to me, and confirmed my own suspicions about how I might had contracted my illness.

I went back to see this doctor again after the test results had come in.  One interesting finding was that

mono could be ruled out completely.  The test that had been used on me initially was not the most effective and had resulted in a false-positive.  I was negative for tickborne illnesses too.  I tested negative for everything for which he tested me.  From the perspective of the tests, I was the model of good health - yet there I sat in the doctor's office - aching, perspiring, running a low-grade temperature and generally feeling like crap.   So what was up with me?  What was the source of my mystery malady?

Once the doctor had ruled out the usual suspects - and then the not-so-usual suspects (testing me for the presence of cancer, etc.), he told me his conclusion.  He diagnosed me with depression, which was manifesting itself in physical symptoms.  Say what???  I wasn't depressed in the least, in my own opinion.  Sure I was feeling down emotionally about how bad I felt physically.  Surely not, I thought.  But he laid out his case for how the symptoms fit, and there was a personally history of mood disorder in my background.  He cited Occam's Razor - the hypothesis that sometimes the obvious and simple alternatives are most often the correct ones.  Therefore, if we treated the underlying depression, the physical manifestations should relent.

I was not pleased with this diagnosis.  Depression is not how I would have characterized my own life the last few months.  Before my illness, I had been enjoying life and found much satisfaction in it.  Was I in deep denial?  Was I so depressed that I couldn't even recognize it in myself?  I found that hard to believe.  But since he was the doctor - and a friend I trusted - I was willing to go along with this diagnosis and see where it took me.

Over the course of the next few months - late winter into early spring - my symptoms seemed to wax and wane.  Some days I felt closer to normal, but other days I could barely manage myself.  I never really knew what to expect from any given day.  It might begin well, but end with me crashing upon my bed.

I grew extremely frustrated as we worked through this diagnosis of depression.  Even with all the

various medications we were trying, I still was not getting any better on the whole.  So finally, I decided to consult a psychiatrist about this diagnosis.  He, too, was a friend and someone I had seen previously.  Another plus was that he was the son of a pastor himself and knew first-hand the rigours of the pastoral life.  When I met with him and shared the diagnosis that I had been given, he concurred that the physical symptoms of depression did indeed match the illness that I was experiencing.  But, he concluded, simply because they match doesn't necessarily mean that they are one in the same.  He argued that one can be depressed and still have a chronic illness.  One can also be depressed because he or she has a chronic illness.  He felt that before we could safely conclude that I was suffering from the physical manifestations of depression, we should explore my illness further to rule out other, more remote and exotic possibilities.  So he referred me to a colleague who was both a practicing psychiatrist and a physician.  If anyone could get to the root of my illness, he could!

To be concluded in, "My Very Own Personal Apocalypse, Part 3."

Cheers,

Stephen

My Very Own Personal Apocalypse, Part 1

September 10, 2014

Dear friends, family and constant readers,

A number of you have asked me recently about how I became ill with Chronic Fatigue Syndrome.  Given the interest, I thought I would take time to share my story with you.

Unlike many people with a chronic illnesses, I can point to a specific day when I became sick.  In the Bible, one of the images used to describe the way the world ends is as like "a thief (who comes) in the night." (1 Thessalonians 5:1)  That image speaks to me personally.  For me, the beginning of Chronic Fatigue Syndrome was like that - sudden, unexpected, a thief come to steal away my health, my well-being, my very vitality.  When that day came, my life as I had known it ceased to exist.  My old life was taken from me - and a new and strange one had begun.  Thirteen years ago this fall, I experienced my very own personal apocalypse.

When I awoke the morning of Saturday, November 10, 2001, it was a day much like any other.  I clearly remember how good I felt as I rose out of bed to greet the day.  I had good reason to feel great - I was in the best physical shape of my life.  And my life itself was both joyful and rewarding.  In my personal life and my professional life, I was living with the sense that everything was coming together.  But before the end of the day, it would all fall apart.

One of the reasons that I remember that particular Saturday is that it was the day of the annual Richmond marathon.  Lynn, my wife, was a participant and had planned to spend much of the day running those 26.2 miles around the city of Richmond.  My plans for the day included taking care of our five young children and finishing up a landscape project in the front yard of our church parsonage.

So that morning, I got the kids squared away with Cora and Hannah, the two older children, helping to look out for the younger three.  While they watched TV and played in the house, I went outside and began my chores.  For the second Saturday in November, it was an exceptionally beautiful day.  The sun was bright.  The air had a fall crisp feeling to it, but it wasn't cold.  It was a perfect day to be outside.

I had spent much of my off-time since June of that year outside.  On our property behind the house was a large patch of woods.  The undergrowth had been neglected for many years, so I spent that summer cleaning out the woods - getting rid of the bramble and poison ivy, cutting up fallen trees and creating a series of trails for the kids to be able to play.  I dug up piles of leaves which had accumulated over many an autumn.  Though I wasn't quite finished, I felt a great sense of accomplishment in the back yard.

Saturday, November 10, my attention turned to the front lawn.  I began my work about 9 a.m. or so and worked for several hours.  About an hour into my labor, I started to sniffle and my throat felt scratchy.  I didn't think much of it and dismissed it as a possible cold coming on.  Another hour or so passed when I began to feel my body ache.  I suddenly felt sore all over.  By this time I wasn't feeling all that great, but still I continued to work.  Sometime after noon or so, I began to sweat profusely.  It didn't take long for me to conclude that I was running a fever.  Since it was the beginning of November and of flu season, I thought that this was what was happening to me.  A reasonable conclusion, it seemed to me - all the symptoms fit: I had a case of the flu!

When Lynn arrived home from the race, the leaves in the yard were pilled up but not bagged yet.  I was sitting on the front steps of the house, feeling like a train had just run over me.  I told her how sick I was and asked if she would call someone to substitute for me in the pulpit the next day.  Then I headed to the shower to wash up and go to bed.

I was confined to bed for the next three weeks, as it turned out, with what I thought must been the worst

case of flu in my life.  For those three weeks, I ran a high temperature and sweat a great deal.  My throat felt raw.  My body ached terribly.  It felt as though my bones had been broken and my muscles torn.  But the symptom which stood out the most was the unrelenting fatigue.  I slept for the majority of each day.  I felt sleep deprived.  I just couldn't seem to get enough rest - no amount seemed sufficient.

By the end of those three weeks, the symptoms lessened in severity so that I could return to work, but they did not leave entirely - nor have they completely left me in the last thirteen years.  My new life was conceived in feeling that I would live every day of my life as though I was still just getting over the flu.  I felt like that at the end of November 2001, and November 2013.  I feel like that today.  I'm still living as though I have the "tail end" of the flu.

This is how my world ended.  This is also how a new, and very different one, was born.

Part 2
Part 3
Part 4
Some Things I Have Learned From and About Chronic Fatigue Syndrome

Cheers,

Stephen

Ways to Read My Blog

September 7, 2014

Hello All and Welcome!

Now that my blog, "One Writer's Life," is back on schedule, I want to thank the readers who have hung in there with me - and also to welcome folks who are coming to this blog for the first time.  I'm glad that all of you are willing to take a little time out of your busy days to read my ponderings on life.

There are several ways to be able to access this blog which I would like to share with you in today's post.

1.  By Email

One of the easiest ways to receive my blog posts is by subscribing for email delivery.  All you have to do for this option is going to my blog - "One Writer's Life" - and in the right hand column locate the option, "Follow By Email," then type in your email address and hit "Submit."  You will receive a notification email asking whether you want to subscribe, so be sure to click the link in that email letting Blogger know that you do indeed want to subscribe.

2.  On the Blog Itself

If you want to read this blog directly from the website itself, hosted by Blogger, then all you have to do is go to "One Writer's Life" and you can read not only the most recent post, but any or all of the posts to date.  This blog site is searchable if you are looking for a particular post or theme.  There is also a list of the most popular posts, and many other helpful elements.

3.  On My Website

My blog is also available to be read on my website - www.stephenarhodes.com.  If you go to my home page, you will see a tool bar at the top of the page.  Choose "Stephen's Blog" and you can read the most recent posts there.

4.  By Mobile Device

If you have a tablet like an iPad or a smart phone, my blog is designed to fit your screen.  To access it on your mobile device, all you have to do is type in your browser the address of this blog - http://stephenarhodes.blogspot.com/ - and you'll be able to read it on the go!

5.  Facebook, Twitter, Pinterest and Google+ Notifications

When I publish each post, I also add links to it on my Facebook page, Twitter account, Pinterest and Google+.  If we are connected on any of these social networks, then my new posts will show up in your feed.  You can click on them and read that way, too.

6.  By RSS (Really Simple Syndication)

Lastly, you may like to keep up with blogs or other internet postings by using RSS.  To receive posts this way, just go to my blog page - "One Writer's Life" - and locate in right hand column (it's at the very end, so you'll need to scroll down to find it).  You may subscribe there - both to receive the posts themselves and also to receive follow-up comments by fellow readers.

However you choose to access my blog posts, I just want to thank you for making time to read them.  It's hard to be a writer if you don't have any readers!

Oh, and One More Thing... Please COMMENT

From the very beginning, I envisioned this blog to not just be a creative outlet for me, but also to be a source of community to those who read it.  I would be very appreciative if you take time to comment on posts that you find interesting or thought-provoking.  I value feedback and want to know what you are thinking too!  There is an option on each post to post a comment on the blog's homepage.  If you post there, others will be able to read your comment and respond, creating a conversation in our little online community.  If you prefer to comment to me directly instead, you can use the email submission form on the blog or else just email me directly - stephen@stephenarhodes.com.  I would love to hear from you.

Have a great rest of your weekend!

Cheers,

Stephen

Beginning Again

September 6, 2014

Dear friends, family and readers,

When I was actively serving local congregations as pastor, the Sunday following Labor Day held special significance for me and for the churches I served.  The term I coined for this particular Sunday in the church year was "New Beginnings Sunday."  During the summer seasons of my last two appointments - in Northern Virginia and the West End of Richmond - the congregations took the meaning of sabbath so seriously that they even rested from the day of rest itself.  In other words, attendance at worship and other church activities fell off precipitously.  Folks were off to vacations, family get togethers, going down to the "Rivah" and the like.  I fought this trend mightily, but generally did not prevail.  Summers became the slow season of the year - church-speaking - and there was little I seemed to be able to do about it.

But in my planning for the church year, I would focus intensely in late August on gathering up my wayward flock from earth's four corners and return them to their pews once summer had ended and fall schedules resumed to where they had left off in May - hence my focus on the Sunday immediately following Labor Day.  Children and youth would be back in school, and adults once more felt the familiar strictures of their work lives and daily routines.  With that in mind, I invited church members to celebrate a "new beginning" on this first (unofficial) Sunday of fall by coming back to church.  What's more, I encouraged them to invite friends, family and neighbors who did not have a church of their own to come with them on this particular Sunday, too.

Believe it or not, this particular strategy worked most of the time.  While the crowds on "New Beginnings Sunday," were not quite the size of those at Christmas or Easter, they were a close third.  We celebrated our "new beginning" as a congregation singing our favorite songs and hymns.

 The choir, once again at full strength, sang anthems with renewed zeal.  Visitors and returning members were welcomed with open arms - we had a policy of no "church shaming," i.e. no one had to worry about being made to feel guilty about spotty attendance during the summer.  "New Beginnings Sunday" was a feast day of celebration, welcoming home the family members whom we had missed during the last three months and introducing ourselves to those who had never worshipped with us before.  These Sundays were among my favorite while serving as pastor.  Worship was a party - hugs were embraced and reciprocated, laughter and smiles became contagious.  It really was a new beginning for us.  It was just as the Bible proclaimed: "the old has passed away, (and) behold, the new has come." (2 Corinthians 5:17)

The reason I share this particular bit of history with you is that, like my former congregants, I, too, have been away for most of the summer.  I have been continuing to regain my strength and stamina after my rather severe relapse of Chronic Fatigue Syndrome in the winter and spring.  But now that Labor Day has passed, it feels right to return to a familiar routine and to carry on with posts on "This Writer's Life."  I would like to make a "new beginning with you and resume our online conversation.  Frankly, I have missed writing and I have missed you all.  So, it seems time to return to a more familiar pattern.  I can't say with confidence just how often I will be posting to this blog, but it should be more frequently than not.  I hope you will join with me in this new beginning and let us make the next leg of the journey together.

Cheerfully yours!

Stephen

Missing Writer Found - Still Alive!

June 9, 2014

Dear friends, family and readers,

As you may have noticed, I have not been posting on my blog for some time now - since February to be exact.  Let me offer my apology for not offering an explanation sooner.

The reason for my absence was because of a severe flare in my Chronic Fatigue Syndrome.  It has been the most serious one in over two years.  This particular flair came on very suddenly.  Most of my normal activities which I had become accustomed to doing quickly fell by the wayside.  Most days during the last three months I felt like a character straight out of the "Walking Dead" - the zombie ones!

Chronic Fatigue Syndrome is a type of autoimmune disorder.  It is similar to more well-known illness such as Lupus or Multiple Sclerosis.  Unlike either of those illnesses, however, my illness is not as physically devastating.  CFS (Chronic Fatigue Syndrome) has no known cause or cure.  It is a mysterious illness which afflicts a relatively small percentage of the adult population.  It's estimated that approximately one million Americans have CFS.  This severe illness goes by other names such as Myalgic Encephalomyelitis (or ME for short).  Another popular name for this illness is Chronic Faituge and Immune Dysfunction Syndrome (CFIDS).  But whatever it is called, CFS is a debilitating and disabling illness.

One of the prominent symptoms of this syndrome is a persistent fatigue that will not go away even with proper rest.  This fatigue is both physical and cognitive.  It makes someone with CFS want to crash much of the time.  And even when the physical fatigue isn't as severe, mental fatigue can still immobilize you.  This fatigue affects cognitive functions.  I refer to this as having "brain fog" - it affects the ability to think, read and write.

I'll share more with you about my illness is subsequent posts.  But today, I just wanted you to know that I am feeling much better and am on the mend.  I hope to return to more regular blogging soon.  I hope that as readers of this blog, you will hang in there with me as I try to continue my writing life despite of my illness.

Cheers,

Stephen