Thursday, June 12, 2008

Saying goodbye to your job ... Finding a new sense of purpose

One of the most difficult times in my life with digestive motility disease was when I had to accept and come to terms with the fact that I could no longer work. This came as a big blow to me as I absolutely loved the work that I was trained to do.

Many people with motility diseases may come to this crossroads in their lives. The emotions that transpire can be overwhelming. Accepting that the illness is real ... it is not going away ... that you will be giving up a major part of who you are and what you do ... that you will no longer be able to contribute financially or physically to many of the things that you once could ... and you must say goodbye not only to a job, but to a life that you once had while entering a new phase of your life riddled with uncertainties, illness, and all that goes with it.

I was a teacher and musician. When the illness invaded my life, I struggled to attend my classes and hide how I was really feeling and how my body was betraying me. I concertized, but it was becoming more and more difficult. Soon, the symptoms overtook the battle and I was forced to resign from all my positions. At one school system where I taught, they refused my resignation. I was told that they would put the position on hold and that I was always welcome back when I got better. This gave me hope. I was brightened by the prospect. But the light eventually dimmed and as I spent more hours in the bathroom, more hours in pain, more hours in despair, reality gave way to hope and I accepted the fact that I was no longer going back.

Life changed. Now, I contributed to the growing debt of our household because of all the medical bills. Now, I not only was battling illness, but battling feelings of guilt because of the debt and the impact that my illness was having on my husband and family.

These were difficult times both physically and mentally. Through the years, however, wisdom has replaced all the old feelings. I understand that all that I once did actually prepared me for what I do now. I still teach ... but I teach a different subject ... I perform, but to a different audience.

I can recall years ago a voice crying on the other end of the phone. Her name was Carol, she was a nurse and she also had chronic intestinal pseudo-obstruction like me. She was sobbing because she had to leave the job she loved ... nursing ... helping others ... all because of her illness. She worried that her sense of purpose would be lost. After years of learning, living and experiencing illness, I remember telling her that I understood how difficult it would be for her. However, she would still be using the same skills ... just in a different way. She would now be helping others with digestive motility diseases and disorders. Her tears stopped, and she suddenly felt a sense of peace. That was such a monumental moment in both our lives.

Leaving a job that you love because of digestive motility disease is not easy. You may experience anger, sadness, emptiness, loneliness and even depression. But let me reassure you that your sense of purpose becomes even more important. I truly believe that all of us who suffer from digestive motility diseases and disorders have a purpose of educating others and helping those in need. I can't think of anything more rewarding.

Think of it as a job change. A change in life ... a chance to share your voice with others who are new to the world of illness or even to veterans like myself who have been traveling similar journeys along the way.

Saturday, May 31, 2008

The Impact Of Digestive Motility Diseases On The Family

Digestive motility diseases and disorders not only affect the patient, but can also greatly impact the patient's family and relationships. How anguishing it is for a parent to watch his/her child suffer and not be able to make the child better. How painful it is to watch a spouse, parent, sister, brother, aunt, uncle, or grandparent endure a chronic illness where treatments may be limited ... where there may not be any cure ... where others may not understand ...

Reflecting on my own experiences, I have witnessed the worried looks, concerned brows, roller coaster of emotions, and my family's bold attempts at trying to conceal the tumultuous torturous thoughts that boldly raced through my family's as well as husband's minds. The helplessness redirected into quiet prayer, entwined with emotions of anger, frustration, fear, guilt, and heartache.

I am blessed to have such a wonderful husband and family who are always there for me, even if they cannot fully understand the scope of the realities that I face on a daily basis because I too try so desperately to shelter them from the pain.

Others, however, are not so lucky. Relationships can crumble and families can be torn apart .... after all, it is not easy when someone has a chronic digestive motility disease or disorder.

Chronic digestive motility diseases focus on the very essence of living ... food ... nourishment for the body to live and function normally. Most of us, cannot eat "normally." The bathroom always needs to be nearby ... just in case. Perimeters become smaller as patients fear that the symptoms may suddenly worsen. Plans become difficult to make because one never knows how they will feel at any given moment. Finances may become impacted as medical costs escalate, employment jeopardized, and income dwindled. Emotions may rise as both the patient, family members, and relationships struggle with the guilt, anger, bitterness, frustration, sadness, depression, and mourning of a life that once was. Siblings may begin to act-up and jealousy may prevail. Spouses and other family members want their needs to be met and may become angry and impatient. Caregivers may burnout from the stress, and both the patient and family unit struggle to live in a fractured world of illness.

There are ways to ease the burden of chronic illness, however. Communication and understanding are key in all relationships. Talking about the illness, feelings, and needs can all be beneficial. Learning about digestive motility diseases and disorders is paramount as well. This may help others to try to understand, at least in some respects, about these illnesses. The physician should be aware of both the patient and family's abilities to cope. Some people find religious organizations helpful in their times of need. Professional counseling should always be considered if the problems escalate to an intolerable level. And support groups such as the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) can be of great benefit by providing information, support, education, and resources. It really makes a difference when people communicate with others who understand because they are traveling a similar journey.

Living with digestive motility diseases and disorders is certainly challenging on a day-to-day basis, but working through each obstacle is certainly worth the effort ... because life is far too precious not to.

I welcome your comments and encourage you to respond with your own experiences.

Friday, May 2, 2008

The Unpredictable Nature Of Digestive Motility Diseases And Disorders

As hard as I have tried over the years, to integrate my digestive motility diseases into my daily life, sometimes they have a way of dictating things more than I would like to admit. This is evidenced by the delay from my first blog posting to now. Suddenly, my digestive motility diseases have gone into an exacerbated mode making life just a bit more challenging right now. All the symptoms associated with these diseases have heightened and although I try stoically to work through the familiar intruders, it is clear that they are impacting my entire body. It becomes more difficult to concentrate, to stay focused and to maintain the energy that is required to do the simplest things in life.

And so, as exemplified through my own personal experiences, I wanted to shed some light on the unpredictable nature of digestive motility diseases and disorders.

Many patients agree that their digestive motility disease goes through different phases. One minute, they may feel reasonably well and then the next minute, they can suddenly experience an exacerbation of the symptoms. These phases have no pattern. Both the stabilized phase as well as the exacerbated phase can last a day, week, month, year, or more. There is nothing that the patient did to cause this to occur. "The gut has a brain all of it's own."

Another unpredictable part of living with digestive motility disease is that of eating. Many patients find that even though they may be able to eat something without any major reaction one time, the next time they eat it, they may in fact be in excruciating pain. Certain foods may be automatic triggers such as those high in fat or gassy foods such as cabbage. But sometimes, what patients feel are "safe foods" ... these can also betray the them.

The uncertainty of living with digestive motility diseases and disorders is clearly apparent to those who are affected by them. It's hard to make plans and it is with trepidation that one goes outside of the house to do an errand, go to an event, or to socialize with others. It can be difficult to go to work or school because there is always that generalized fear that the symptoms can unexpectedly become worse.

I have been living with multiple digestive motility diseases and a myriad of other non-digestive medical problems for over 29 years. I continue to strive to live a quality and productive life and although it can be challenging, I am still committed to integrating the diseases into my daily living. Compromises are absolutely necessary. But I have chosen not to let the diseases consume my life. Instead, I aim my passion towards helping others through the Association of Gastrointestinal Motility Disorders, Inc. (AGMD). I focus on my blessings ... AGMD, a wonderful husband, family, friends, pets, and my strong faith as well as all the big and little things in life.

Through the years, my perspective has changed I have come to realize what is really important in life. I certainly would not have chosen a life of illness, however, seeing though God has given me this life, I embrace it with a gracious heart that I am alive and able to perhaps do some good on earth while I am here.

Living in the balance of having a chronic digestive motility disease with its unpredictable nature can be most challenging. But learning to ride the waves of its ups and downs is a strategy that is most important in order to live a quality life with disease.

I have always said that it is not the length of time that I am here on earth, but it is what I do with my time. I believe that everything has a purpose, and even though life has become far more challenging these days, I am prepared for the journey and grateful that God has given me another day.

Thursday, March 27, 2008

Welcome to Mary-Angela's Blog

According to the Johns Hopkins Marvin M. Schuster Bayview Medical Center, there are more people suffering from digestive motility disorders than there are Americans suffering from AIDS or coronary heart disease.

There are many different types of digestive motility diseases and disorders including some of the more common ones such as irritable bowel syndrome (IBS), gastroesphageal reflux disease (GERD), fecal incontinence, diarrhea, and constipation. There are also some rare forms such as chronic intestinal pseudo-obstruction, Hirschsprung's Disease, and gastroparesis.

The impact that these diseases and disorders can have on a person’s life can be most profound. Digestive motility diseases and disorders can affect anyone at any age. In some cases, the disease can be from genetic causes. In other circumstances, they can be secondary to an underlying disease such as diabetes, Parkinsons' disease, scleroderma, muscular dystrophy, or lupus, etc. There may also be no underlying disease causing the problem. Many patients may not even look ill even though they are suffering greatly from a digestive motility disease. This can lead to many misconceptions about these digestive problems and the patient. Many patients feel very much alone in their suffering. It can greatly impact their lives and the lives of their loved ones.

The purpose of this blog is to shed light on specific digestive motility diseases and disorders and to cover some of the major issues that patients and their families must confront in coping with these problems.

I am a longtime patient suffering from multiple digestive motility diseases as well as other non-digestive motility problems. The digestive motility diseases and disorders that I have include chronic idiopathic intestinal pseudo-obstruction, gastroparesis, diffuse esophageal spasm, achalasia, dysphagia, and gastroesophageal reflux disease.

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) is a nonprofit international organization dedicated to serving patients suffering from digestive motility diseases and disorders as well as their families. In addition AGMD serves as an important resource and database for those in the medical and scientific communities. I am honored to have started this organization in 1991 and have been humbled by the stories and lives of so many people affected by these diseases. If AGMD can be of any help to anyone, please contact the organization. AGMD has been serving as a "Beacon of Hope" for over 17 years.

If you have a specific topic or issue that you would like me to cover in this blog, please let me know.

It is my hope that more people will be aware of digestive motility diseases and disorders and what patients and families must go through on a daily basis.