Monday, September 21, 2009

Understanding Chronic Health Conditions: Part 4

One of the hardest things to do when you are an independent person and someone who has always worked for a living is adjusting to life with a chronic health condition that limits your ability to function on a daily basis. At it's best a slower pace is going to help you manage your condition and remain functionally fit for a longer period of time. At it's worst is going to make you question your self worth and your purpose in life.

I am one of those people who felt that perfection in everything I did was my ticket to love, respect and value as a person amongst my family, friends and co-workers. I had the perfect house; always clean and fresh smelling, everything in it's place and magazine picture ready. I was the best employee my boss ever had; punctual, detailed, effective and always the first to come in and the last to go home after hours. I put so much of me into everything I did and everyone I loved I had nothing left for myself.

When I finally had to accept that the doctor was right and that I was sick I had ran myself into a very delicate medical state. When I finally recognized myself as a chronically sick person because I could no longer performed at the level of "perfection" I imposed on myself it was a very sad day for me. When I finally surrendered what I expected and traded it for what I needed to do to be able to function at my personal best with a chronic health condition I discovered that my life had not ended it had simply changed.


  1. Pace yourself, and try to stick to a fairly regular schedule.
  2. Take note of when you are overtired or overanxious, and try to modify your activities accordingly.
  3. Prioritize activities, and don't overextend yourserlf.
  4. Ask for help when help is needed; seek out support programs in your community or online if necessary.


  • Ask your doctor if there is a special diet you should follow, foods that you should avoid or foods that are specially good for you.

  • Get treatment for dental problems promptly such as missing or loose teeth, gum disease or tooth decay that may interfere with eating or get a dental check up if you have not had one in the past year.

  • Get treatment right away for any condition or sympton that interferes with eating such as heartburn, constipation, diarrhea, nausea, trouble swallowing and changes in appetite or eating habits as they may signal another problem.

  • Maintain activity levels as much as possible. Talk to your doctor about specific exercises or physical therapy that might help you manage your symptoms and maintain a healthy weight. Stretch. Walk. Take deep breaths and slowly release several times a day. Swim or join a water exercise program. Garden or Dance. Anything that will keep you moving and preserve you lung capacity if good for you.


More than half of people over age 40 report sleep problems related to stress, which can significantly affect quality of life, cause great distress, impair memory, concentration and alertness.

Sleep problems may be a sympton of a medical condition or psychiatric disorder -- most commonly depression -- or may be side effects of medications

Talk to your doctor if you notice changes in your sleep pattern that persist for more than two weeks, such as difficulty falling asleep, waking up frequently during the night or waking too early in the morning.

Friday, September 18, 2009

Understanding Chronic Health Conditions: Part 3

  • Seek out the right doctor for you, preferably someone who is experienced in dealing with your condition.
  • Investigate whether you might be best served by a specialist as your primary caregiver, and understand which specialist is best for your you (for example, a neurologist specializing in stroke may be more appropriate for managing stroke than a general neurologist).
  • Ask about specialized recovery programs,such as stroke rehabilitation to recover lost function or physical therapy to increase mobility or reduce pain. Remember that some head and neck or brain cancer patients can and many do loose neurological function very similar to stroke patients.
  • Be prepared for doctors visits.Write down your questions and keep a health journal (see below) so you can answer the doctor's questions accurately, and make relevant questions specific to you.
  • If you are seeing more than one doctor be sure they all know what medications or other therapies the other doctors have prescribed and why. It is useful to keep a copy of the lab results from one doctor to show the next with you during your visit so that you don't undergo repeat tests before time but also for your overall care.
  • Finally, follow your doctor's orders carefully, including how and when to take medications and what to do if you miss a dose.
Continuously Monitor Your Health 

This is not a useless lethany of "worry-wart" complaints or defeated "pity-party". It is a partnership with your doctor for health care managment that will help you both better communicate and help each other decide what's next. Use a health journal, booklet, calendar or notebook devoted exclusively to medical notes and information to:
  • Record symptons: including when they occur, their severity and what activities might be triggering them;
  • Keep track of doctors visitsand take notes about impotant comments or suggestions during a visit; and
  • List your medications and any other therapies, and make note of any side effects.
  • Remember to bring the health journal to your medical appointments, and share any relevant information from your journal with your doctor and/or nurse.

Tuesday, September 15, 2009

Understanding Chronic Health Conditions: Part 2

An Unfamiliar Road:

Living with a chronic illness is not unlike driving down an unfamiliar road; you are never quite certain what lies ahead of you. It's important to remember that even unfamiliar roads can be negotiated, and the same is true of chronic illness. There are maps that show you where you're going, guidebooks to help you know what to do along the way, and other people who have been down the road before you. Knowing what to expect and doing what you can to cope with whatever comes your way can help you negotiate the road ahead.

Taking Control:

Living with a chronic condition can pose enourmous challenges, physically, emotionally, and financially. But your illness doesn't have to control you. There are many ways to gain better control of your health and maintain the best quality of life possible, and many places to turn to for help (I will include a resources list at the end of this article series).

Chronic illness may demand adjustments in many aspects of your life, and learning to accept and cope with that fact is part of the process of managing your illness. Remember, you don't have to do it all at once: set achievable goals for yourself and take one step at a time!

Understand Your Illness:

1. Ask your doctor for information; a good doctor that cares about his patients long term wellness should be able to provide materials or recommend books, articles and websites that will be useful to you. I have "fired" more than one doctor who was too busy to talk to us and offer guidance in accessing useful resources for patient and caregiver education.

2. Visit your local library or bookstore to research yoru condition. You want to ask the right questions and understand what alternative care and supportive therapies are clinically sound and helpful in your individual case. By learning as much as you can you will be able to have a useful conversations with your healthcare team from the start.

3. Learn what symptons to expect how to manage them, and what might cause them. It will help you greatly if you can prepare yourself emotionally, spiritually and intellectually for the daily challenges that may or may not become a part of your life eventually. Learn how to identify signs and symptons of progression, what is your new "normal" and what isn't.

4. Contact relevant organizations and ask about free information packets, support groups and referrals to other organizations that may offer free services and useful resources in areas which you may need help and guidance. (I have a number of useful resources, links and articles listed in our blog and I will include a new one in this article series at the end.)

Join a Support Network or Group:

Several small studies of people with metatastic breast cancer or melanoma showed an association between participation in support groups and longer life. Not just longer life for longer life's sake but quality of life!

Many patient organizations coordinate support networks; try to find one that deals with your individual major specific condition as the lead support system and if possible, secondary support groups for your co-existing disorders.

Learn how other people deal with common problems and what strategies they have found useful for managing symptons. common problems and coping with lifestyle adjustments.

I belong to an autoimmune condition support network as my primary source of personal support, a group for reproductive cancer survivors, a traumatic brain injury survivors caregivers alliance and I check in from time to time with a cancer moms network. They have all helped me tremendously in different areas of my life and I am sure they can be very helpful to you too.

About the Author: Wilma Colon Ariza is the founder of Stevie JoEllie's Cancer Care Fund a Thyroid Cancer Awareness, Access to Care and Free Supportive Services Nonprofit

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.

Wednesday, September 9, 2009

The Uncertainty of Thyroid Cancer

Cancer can lead to uncertainty in many areas of your life, and this may be a cause of some of the emotions that you have. Feeling that we have some control over our lives gives us a sense of security and allows us to enjoy things that we do. It’s natural to want to know what is likely to happen to us, so that we can plan for our future.

When cancer is diagnosed, it can take away your sense of security and control and this can be very frightening. Uncertainty can be one of the hardest things to deal with and can cause a lot of tension. You may find that you feel irritable, angry and frightened. Sometimes it can help to find out as much as possible about the illness and what may happen. It is best to discuss this with the doctors and nurses who know you and are involved in your treatment. You can also ring our helpline and talk to one of our nurses about your situation.

Often, it’s difficult to know whether treatment will be successful and whether the cancer can be cured. Once treatment has ended you may be left wondering whether it will come back. This uncertainty can make it very hard to plan ahead and you may wish that you could know for sure what will happen.

Unfortunately, it is often impossible to know whether a person has been permanently cured of their cancer. If someone's cancer has come back it is often difficult to say exactly what effect it will have and how long they will live. You may find that your doctors and nurses can't answer your questions fully or that their answers sound vague. Many people find this uncertainty very hard to cope with.

If you find that the uncertainty is a continuing problem and you feel overwhelmed by it, it may help to talk to a counsellor or psychologist. They can help you to find ways of coping with the feelings and emotions that it causes.

If you have been diagnosed with cancer and think that you may die, sorting out your affairs so that things are in order and you know that friends or family will be alright can also be helpful. This may be very difficult and painful for you, members of your family and friends.

Instead of fighting the battle by yourself, you can find a thyroid cancer support group of people who are dealing with similar issues. Support groups are even available online.

Putting things in perspective, gaining self-control and finding support:

(1) Gather more information about risk factors for thyroid cancer. Two of the most common risk factors are exposure to radiation at an early age or a diet low in iodine.

(2) Know that there are many support groups for thyroid cancer survivors and the recently diagnosed. Many of these groups are available as online forums in popular social media channels such as Facebook, MySpace and LinkedIn.

(3) Speak with a nutritionist about the diet you should follow before your treatment. In general, thyroid cancer patients usually should eat foods high in calories and protein. If you are scheduled for Radioactive Iodine Therapy or Scan you should talk to your doctor about a Low Iodine Diet which is required 2 weeks prior to the procedure. 

(4) Contact local hospitals and inquire about thyroid cancer support groups and general support groups. Hospitals are one of your best sources for local information in your community.

(5) Start your own support group. You can create your own Web site to start an online support forum or establish a local group by working with your hospital to advertise your group's presence.

Finally, you can join our online community on Facebook