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.