Thursday, July 14, 2005

QUALITY of Life; Journey from Diagnosis to Living Well

Greetings!! We have devoted many blogs to issues dealing with chronic care management. In future blogs we will be discussing something called "Patient-Centered Care". This is a new health care treatment concept that is as far from the traditional "Disease or Doctor Centered Care" process as day is from night. Yet, strangely enough, the concept is as old ad time. I'm almost finished with the research, and should be able to start these blogs tomorrow.

But before we get to the serious information again, I want to take the time to talk about a subject close to the heart of all of us who deal daily with management of a chronic disease - Quality of Life.

When I was at my "Active" peak, I would pray for "long life, wisdom", etc. When I was first diagnosed with Multiple Sclerosis, in the mid 1980's as a "diagnosis of exclusion" (in normal people speak, this just means that they really don't know what's wrong with you!) I went into a decade long state of denial. At the end of this blog, I'll copy for you what I call my 5 Chapters of Transition. I wrote this, I believe, in 1999, as I finally accepted the medically-objective (i.e., the results of an MRI and a Spinal Tap) that I had Multiple Sclerosis "for real", and not just a "diagnosis of exclusion".

Now, we who daily manage a chronic disease, wish for health, and not necessarily a "long life". For, without your health, one reasons, what good is the "long life"? Herein lies the concept of Quality of Life.

As we saw in the Laughter as Medicine blog, a positive attitude; a deep belly laugh really does help one's health. Research also shows CONCLUSIVELY that a positive attitude is very helpful in contributing to the quality of one's life.

So, I ask you, how is the quality of your life? Even those with perfect health often do not have a positive qualify of life. Can you even define what quality in your life looks like? When I consulted with companies (and those of you interested with the Management Consulting company that I started with two of my Partners that were former part-Owners of the Ship Repair Yard, can visit the website: I used to ask the client one of Dr. Steven Covey's 7 Habits that was and still is my favorite: Start With The End In Mind. What do you want to achieve? What does it look like when the project is finished? If they were hiring someone for a position, I'd ask, "What does it look like when the incumbent of this job is successful?" If I was assisting someone transition from one job to another, I'd ask, "What does it look like when you are energized at work; what are you doing; what time of day are you working; who are you interacting with, or what are you interacting with; etc."

Why did I concentrate on the end result? Well, If you can't describe what it is you are looking for, or where you are going, how do you ever expect to get there?

So, you are a person; perhaps you too are dealing with a chronic illness; or, you are supporting someone who is dealing with a chronic illness; or, you happened onto this blog by accident, and you want some more information about increasing the quality of your life. Wherever you started, WELCOME!!!

Your first challenge is to take a sheet of paper and write down at least 5 things that you REALLY love doing; that, if you could waive a magic wand, you would spend all of your time doing. I'll start with my 5 things:
  1. Playing with my Grandaughter (this could be 1,2,3,4 and 5 let me tell you!)
  2. Reading
  3. Working on this blog.
  4. Doing Internet research for the blog.
  5. Helping people help themselves in whatever way I can.
  6. Keeping up to date with friends and family.

OK, I had to do 6 instead of 5. But, it took me all of 1 minute to get these down. They constitute my passions; my joys; my QUALITY OF LIFE!

Now, reading my key passions, could you tell that I daily manage the myriad symptoms of the chronic disease Multiple Sclerosis? (And if you want to see what the symptoms are, they are all depicted in the Worksheets in the Disabilitykey Workbook at the website.) No, because the disease does NOT define me; my passions do!

Before I had my grandaughter to play with, Reading was my #1 passion, by far. I love to match wits with the "bad guys" in mysteries; go to far away places in adventure books; page-turn in suspense yarns, etc. I am in my mid-50's, and have read, literally (no pun intended) thousands of books. Until recently, one of my favorite books was the book The Eight, by Katherine Neville. It is still high on my list of favorites, but has been surpassed by the 4 book series of ABSOLUTELY FANTASTIC books by an author named Eliot Pattison. The 4 books are:

  1. The Skull Mantra
  2. Water Touching Stone
  3. Bone Mountain
  4. Beautiful Ghosts

While each book can stand alone, I find it best to read the books in sequence. The books are intricate suspenseful mysteries, coupled with the most fantastic life wisdoms I have ever, ever read. They take place in Tibet. This is what the San Francisco Chronicle says about the second book, Water Touching Stone: "A rich multilayered story that mirrors the complexity of the surrounding land, where few things are as they seem....Pattison takes readers to a quietly troubled part of the world and peels away at the centuries of culture that have come into conflict."

Here is a passage, a "sliver of wisdom" in a powerhouse "Redwood tree" of wisdom packed into each book.

From pages 134 and 135 on the 3rd book, Bone Mountain, Pattison writes: "Sometimes, Shan's (the main protagonist in each book; like an "everyman/everywoman") father told him, people can live eighty or ninety years and only briefly, once or twice at most, glimpse the true things of life, the things that are the essence of the planet and of mankind. Sometimes peolpe died without ever seeing a single true thing."

Have you ever seen a "true thing"? I'll tell you that the pure, unconditional love of a child is a "true thing", for sure. Would you know one if you saw, heard it? Concentrating on things that you are passionate about, that enrich your life - that defines Quality of Life. Without Quality, it doesn't matter if you have a chronic illness or not - if you are perfectly healthy - the richness of your existence is missing.

AND, it is FREE! None of the things I mentioned cost $ (I guess you could say I couldn't do some without a computer, but Libraries have computers)! I get all of my books from my local Library!

So, find your passions; grab ahold of your "true things" in life with both hands, and develop your own quality of life. You will find that this becomes your best medicine; your best way of managing your chronic illness.

Again, as always, comments, additions, and questions are welcomed.

Here is my "5 Chapters" (taken from my website,

A Journey of Acceptance:Reacting to Non-Visible Multiple Sclerosis in 5 Short Chapters
Chapter 1: Identification
About 35 years ago, a high school student kept having her fingers go numb. Going to the doctor, she was told “you have poor circulation. Just move your fingers more.” A decade later, a new mother started to have visual black-outs and holes in her vision. An optometrist told her “You are having migraines; just be happy you don’t have the headache also.” A decade later, her feet and left side went numb, and a Dr. said “You may have multiple sclerosis (MS)." It was a diagnosis of exclusion because they couldn't find anything else. Three years later, the right side of her face went numb. A doctor declared that it was “just nerves – your father just died.” Finally, in 1998, a new optometrist told her that her that her double vision, dizziness and vision holes were classic symptoms of MS. With a new neurologist, the diagnosis was confirmed. After 35 years of thinking that she was crazy, she finally had answers.
Chapter 2: Denial
Between 1986 and 1997, various life crises forced her into a major game of denial. There was no time for dealing with debilitating illness while facing the end of a 23 year marriage; helping two teenagers grow into wonderful adults; the death of a grandmother, her father-in-law and both parents; two job changes and now having the occupation of a lifetime – helping people be the best they can be. She was a strong woman who could handle it! Right? To do less is to be lazy.
Chapter 3: Acceptance
At one point toward the end in that long denial period, it was a very rainy year in Oregon (not redundant!). When the roof began leaking on her head at both home and office on the same day, she broke down and decided enough was enough! For the first time in her life she considered ending it all, suffering serious doubt in her ability to manage what her life had become. Seeking depression counseling from a caring doctor was the first step in acceptance. Going back to a neurological specialist after 11 years of denial was the second step. Enduring exhaustive batteries of tests and establishing the diagnosis prompted her to learn as much about MS as she could – step three. Then came all of the literal as well as figurative steps in adjusting to her new life: weekly Avonex shots, accepting the fatigue, incontinence, numbness, dizziness, using a cane for balance, etc.
Chapter 4: Making the System Work for Her
She loved her job as Vice President of Human Resources for a large industrial company. One day she found herself in the following situation: her CEO was on the phone, a Sr. VP was on her cell phone, a manager and his Union Business Agent were talking to her in her office; the Safety Officer and an angry employee were in the hall, both talking to her. Suddenly she couldn’t remember who or where was! The time had come to realize that she was in control of the disease; it wasn’t in control of her! With a thorough understanding of her company’s disability plans, she now needed to put that understanding – and the system – to work for her. She knew that the available benefits would give her the much-needed time to fight this new monster, as well as take care of practical matters like hiring a replacement and paying more bills on less salary. Most importantly, qualifying for short-term and long-term disability would help maintain her quality of life so that she could still contribute to lives of those she loved.
Chapter 5: Helping Others Fight the Monster
With the fantastic support of her company, her family, and her friends, she set her plans into action. In October 2001, she took peer counseling training from her local MS organization and, after dropping back to part-time employment, she became dedicated to helping others help themselves.


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