Saturday, September 12, 2009

Understanding Chronic Health Conditions: Part 1

My grandmother used to say that if you have lemons you best made some darn good lemonade. It was her version of a commonly used metaphor for making the best of things, specially under difficult circumstances. A gentle, kind hearted and hard working woman that made me laugh the very night before she died, I try to remember and honor her when I feel like giving up and simply can't imagine anything else going wrong.

If you are living with a chronic health condition you are not alone! By some estimates, half of all Americans - 125 million people - suffer from at least one chronic condition. Think about it; almost one in four people live with more that one illness for over half of their lives.

Chronic, by definition, means long lasting or recurring. Examples of common chronic health conditions include arthritis, diabetes, depression, heart disease, Alzheimer's and cancer. Yes, Cancer! Many of our blog followers know that my family has been touched by cancer more times than I care to count and that I have a personal interest in progressive neurological conditions because of my own degenerative autoimmune disorder and my 20 year old son's traumatic brain injury, in this article series I will focus on brain related disorders, but the general guidelines discussed may apply to any chronic health condition.

For more than one third of Americans - some 40 million people- chronic illness takes the form of a brain disorder. These disorders are most commonly the result of damage to brain tissues such as in stroke or head injury and/or progressive dysfunction and death of nerve cells or neurodegeneration, such as occurs in Alzheimer's, Multiple Sclerosis, Parkinson's, Head and Neck or Brain Cancers and in some autoimmune conditions.

As we age, our brains become more vulnerable to many brain disorders but more and more Americans are increasingly affected at any age due to brain injury, cancer, cancer treatment sequale and autoimmune conditions. In some chronic neurological, autoimmune or brain disorder illnesses, physical signs begin gradually, and may not be noticeable for years. Symptons may be mild or severe, frequent or infrequent, or they may not be evident at all on a day to day basis.

Because so many factors affect the course of a chronic illness- including some within our control and some that we cannot control-- it may be very difficult to predict how we will feel from one day to the next and therefore our best intentions and efforts are often derailed. For people on the "outside" looking in it may be difficult to understand and accept our limitations. I am often told I don't look sick and I just need to get better organized ! I have given up trying to explain myself because I realize that there are people who have will never, ever understand no matter how much medical and scientific evidence is shared with them.

I have neglected this blog, our twitter account and our Facebook page these past few weeks, preoccupied with the business of relocation, Stevie JoEllie's next surgery on Monday, her continuing cancer treatment and monitoring, my son's future as a traumatic brain injury survivor burdened with the uncertainty of what, where and how the next health crisis or day to day living situation will change if my stress related exacerbations continue to limit my ability to physically function in a new city where we don't really know anyone except a few busy relatives.

Where to go for help if we need it? How to get around if I can't drive and the kids are not feeling well? Household chores and unpacking ? Errands without a car for a few months? Recreational activities with health issues? Walking my dog, finding an affordable vet and a friendly groomer? Even in the face of these initial concerns and questions the move is our best alternative in the face of mounting medical bills living on a fixed income. I realize all these things will be resolved as we settle in and worrying will get me nowhere except clinically dysfunctional. So every now and again I have to disconnect and recoup!

If you are having trouble recognizing your are a "chronically" sick person then you are going to have a harder time adjusting to the everyday challenges of your life. Saying yes I have a chronic illness is not an easy thing to do but the road to functional fitness and control begins with admitting you are indeed a chronically sick person and arming yourself with the right information and resources for personal and family support. It does not mean you are giving up and simply having a pity party every chance you get.

If you are a family caregiver of a chronically sick person or you love someone who is chronically sick you will benefit from this article series because of the nature of the information I plan to share that will help you better understand the day to day challenges you will both share and gain or feel some sense of control over how you choose to react to the new reality or your relationship and your loved ones life. I hope you do consider sharing these articles with those closest to you so that it opens up a difficult conversation many families don't know how to begin to have.

It is important to remember that half of all Americans live wiht at least one chronic health condition, even as the rate of disability among adults is droppin. Recognizing that you may have a chronic illness is the first step in getting the help you need. Understanding the "what, when, why and how" of your illness can go a long way toward helping you learn how to cope, manage symptons as best you can, and make appropriate lifestyle adjustments. All of these steps will help put you in the driver's seat so that you CAN take charge of your condition and regain control over your life.

About the Author: Wilma Ariza is the founder of Stevie JoEllie's Cancer Care Fund a thyroid cancer awareness, access to care and free supportive services nonprofit.

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