Thursday, December 17, 2009

Digestive Motility And The Holidays

For people who are healthy, the holidays can be a very stressful time. But, for those with digestive motility diseases and disorders, this time of year can be even more challenging.

The heightened focus on food during the holidays can punctuate the fact that the person with digestive motility cannot eat or cannot eat "normally." The aroma of baked goods and special holiday recipes can become increasingly more pronounced, whether it is at home, while visiting, or driving past restaurants. Having to cook for the celebrations when the person feels ill can evoke a multitude of emotions. The temptation to eat foods that the person knows is going to cause an exacerbation of symptoms can become overpowering. The roller coaster of emotions can truly become heightened.

For some, the holidays can be a reminder of the past, when he/she was healthy and was able to eat. Watching others eat and enjoy food while the patient is unable to can give rise to anger, overwhelming sadness and even depression.

The emphasis of the social impact can often times be painfully felt. Some may feel extra pressure to fit in and attend social gatherings. Some may punish themselves by eating just so that they will "fit in." Others may fear eating in public and feel embarrassed or self-conscience that they cannot eat. They may have anxiety that their symptoms will become apparent in the public/social situation.

Feelings of guilt may be felt because the patient is unable to meet his/her expectations or the expectations of others. Often times, the patient does not want to disappoint his/her family and so may even over extend him/herself in order to accommodate.

Because of the unpredictable nature of digestive motility diseases and disorders, the commitment to accept a social invitation can be unsettling. Sometimes that patient accepts with good intentions only to have to cancel because of the intensity of the symptoms. The questions arise as to how much they can mask in public so that they will not make a scene, become embarrassed, leave early, spend time in the bathroom, not be able to eat what is being served, or have an emergency situation?

The fact that many people do not understand the patient's illness can also be more apparent. Comments such as, "You look so good" or "Why can't you eat? You don't look ill!" can make the patient even more discouraged. The expectations that others SHOULD understand can be quickly shattered as the patient feels even more isolated and alone.

The added tasks that need to be done during the holidays can seem overwhelming to the already greatly fatigued patient. All of this can send the patient into a downward spiral, both physically and mentally, as attempts to accomplish what needs to be done may be futile. It may be another reminder that the illness is progressing. It may be another reminder of what the illness has taken away. It may lead to even more physical and emotional exhaustion.

After living with digestive motility disease for nearly 31 years, I have personally journeyed through some of the obstacles associated with coping with the chronic illness. The lack of understanding, the painful look of helplessness in my family's eyes, the not looking ill in spite of all the suffering, well intentioned people prompting me to eat, the feelings of guilt of not meeting my own expectations, missing out on many important family functions and events, not being able to work, and the long list of issues that so many others must face.

But after all these many years, I must say that through the support of my husband and family, the strong faith that I have as my foundation, the people within my extended family of AGMD, and time itself, have enabled me to weather each storm, become even stronger in will and determination, adjust to the ever present and ever changing symptoms, and camouflaging how I am feeling and what I am truly going through in public. I no longer feel hunger, I no longer have the temptation to indulge in eating something that I know will most likely precipitate an exacerbation of symptoms because the pain is far greater than that one morsel of food. I have learned to deal with the "You look so good" comments, the gifts of food from people who just don't understand, and many of the other things that accompany living with digestive motility. There are still times when my mind will battle with my body as I attempt to push myself to accomplish things, attend events, and take on more tasks only to be disappointed in myself because of the realization that will power can only get you so far. But the inspiration that I get from so many others walking the same road makes things just a little bit easier.

During the holidays, I still participate by sitting at the table and sipping tea. And even though my visit with family is abbreviated, at least I am able to still share some precious moments with those who I hold dear. This has become our "normal" life. And I am grateful to be alive and still be a part of each celebration. And during these times, I reflect on all of you and I sit in grateful humbleness of how enriched my life truly is.

If you are having trouble coping with the holidays because of digestive motility, there are some things that you can do. Some suggestions include the following: contact AGMD, call an understanding friend, talk to a psychologist or psychiatrist, tell your physician, talk to your minister, and/or write your thoughts in a journal.

Throughout these holidays, I want to remind you that you are not alone. AGMD is here for you. And know that I am with you in heart, thought, and prayer not only throughout this holiday season, but always.

May your new year be filled with hope and an abundance of blessings.


Thursday, December 3, 2009

The Layers Of Life ... With Digestive Motility

Recently, it was discovered that I have autonomic neuropathy. This causes me to feel even weaker than before, have problems regulating sweat, have episodes of passing out or feeling faint, have urinary concerns, and an inability to discern hypoglycemia. Along with this, my dystonia and episodes of transient mini seizures have become more frequent. Sleep apnea has also been added to the list in addition to major concerning problems with my thyroid. I relate all of these new developments to describe what I call the layers in my life ... The new symptoms and illnesses that are added and compounded with all the digestive motility diseases and disorders that I suffer from.

Digestive motility diseases and disorders are extremely unpredictable making the ability to adjust and integrate them into one's daily life extremely challenging. Just when the digestive symptoms become a "comfortable" and "normal" part of an abnormal life, the disease becomes exacerbated without any warning. This leaves the patient once again scrambling to figure out how to live their life in what then becomes a "new normal" for them.

This is a mammoth task for any human being. But, when suddenly a new symptom develops that may not be digestive in nature, then it takes a herculean effort to endure and overcome this as well. These are the layers, the symptoms that you may not see in the medical book or the illness that may be dependent or independent from the motility disorders.

Along with digestive symptoms, so many of us suffer from overwhelming fatigue, lethargy and malaise. It takes sheer will, perhaps a bit of stubbornness, and a committed drive just to overcome this cloud of energy loss and be productive through the day. It can be difficult for others to comprehend how much effort it can take just to pick up a pencil. Perhaps it is because so many of us do not look ill. Perhaps it is because so many of us find a hidden strength in order to accomplish things in our daily lives that need to be done in spite of being ill. Perhaps it is because we have learned to integrate the illness into our lives or perhaps, it is because we try so very hard to be productive in order to fulfill our sense of purpose in life. Whatever the reasons, this extreme fatigue is one of the most challenging "layers" of symptoms that plague so many of us. There are some days, when we are more successful than others in staying up a full day or doing what we set-out to accomplish. But there are other days, when the energy level is so minute that a few steps to the bathroom becomes a daunting task.

Then there is the low back pain that so many of us have. You probably wouldn't see this symptom in many medical books as it relates to digestive motility diseases and disorders. However, when the belly becomes distended, the pressure of the swelled abdomen pulling on all the muscles and spine can be excruciating. Another layer ... another symptom ... another challenge.

Of course the list of medical problems that so many of us experience could probably impress the Guinness Book of World Records. It is hard to believe that one person can have so many medical issues and still be able to function to a certain degree and in some cases, not look ill.

Integrated into all of these layers is the emotional roller coaster that one can experience. With digestive motility diseases and disorders, there is the continuous struggle with the symptoms. For some, the inability to eat can be emotionally painful, especially, while others are able to enjoy their food. There can be social issues, feelings of isolation and loneliness and for some, even depression. Add to that, the extra layers of symptoms and illnesses that may be non-digestive in nature. The migraine headaches, arthritis, neurological, circulatory, and pulmonary problems ... the bone and muscle diseases, etc. All of these layers of illnesses make the challenges of digestive motility even more demanding.

Along with all of this, comes the stresses of life itself. Whether it is finances, relationships, deadlines, or losses ... these extra layers can often cloud some of the most precious blessings that we have.

There is no question that the human body is a remarkable machine. But there is no question that the human spirit is also remarkable. Throughout all these years, I continue to be amazed by how much so many of you have endured on a daily basis. I continue to be in awe by the perseverance, determination, wisdom, and love that so many of you unselfishly give no matter what your circumstances.

It is this inspiration along with my faith and wonderful support that get me through each physical hurdle and all of life's trials ... all the extra layers in my life.

No matter what symptoms you are experiencing, no matter what decline your emotional roller coaster is falling at, and no matter what extra layers you are dealing with, I hope that you will find refuge in knowing that so many of us understand, so many of us care and so many of us are going through similar journies. Together, we can overcome all the layers of our lives. And I am so honored to be there travling along side of all of you.

Thursday, August 27, 2009

What If? Every Day Decisions

We all know just how unpredictable the symptoms of digestive motility can be. It's a moment to moment thing. In one moment, we may have a brief burst of energy. In one moment the digestive symptoms may be tolerable or may be what we have grown accustomed to in our daily lives with these disorders. How we feel governs much of what we are able to do, are determined to do, or are willing to commit to ... but then again, it's so unpredictable.

Do I go out shopping? Do I go visiting? Do I have company come over? Do I go to work? Do I go to school? Do I take my own car? Do I go on a trip? Do I go out to a restaurant? Do I call the doctor? Do I go to church? Do I call a friend? These are just some of the daily decisions that motility sufferers have to make each day?

Part of the mind process that calculates weighing the risk of each decision involves the following: What if I am out and I have to rush to a bathroom? What if there is no bathroom accessible? If it is a public bathroom, it will be embarrassing if I have diarrhea and between the odor and the sounds of gas expelling from my bowel movement, it will be humiliating. What if I vomit in public? How will I deal with the embarrassment? What about cleaning up the vomit that gets all over my clothes, shoes, floor, table, car, etc.? What if I have something to eat or drink and I begin to choke because of esophageal motility problems? What if I get sudden excruciating pain and I am in a public setting? What if I am in a restaurant and there is nothing on the menu that I am able to eat? What if I am on a plane and my symptoms become exacerbated? What if I am on a boat, away from home, at work, in school? What if I don't have the energy?

Sometimes, by choosing to take a risk, we become disappointed with ourselves for not being able to meet our expectations. Other times, people can disappoint us because of their reactions and insensitivity to our health situation. It is not an easy road.

Fears and embarrassment can often result in isolation and loneliness in patients. Instead of going out, they would rather stay in the comfort of their home. But the social aspect in a patient's life is extremely important and without it, there is a greater risk of depression, self-absorption, and more focus on symptoms and inabilities versus abilities.

Personally, I have always been a risk taker who thinks things through before taking the plunge. During our recent three-day AGMD Digestive Motility Symposium, when my health was pushed to its limit by all the preparation involved, my symptoms were intense during the entire program. Questions kept echoing in my mind? What if I can't talk because my voice is in spasm? I need a contingency plan so I ask members of my family to be on alert with the prospect of taking over in the event that I am unable. During the program, I got intense noncardiac chest pain throughout one entire day. My husband was on guard as he saw me open my case to take out the pills that I needed. The nausea was so intense that I thought I was going to vomit at the table. My belly was distended to such a large degree, that I had to wear a suit with a long jacket to camouflage the unbuttoned, unzipped waistline. I had such grave malaise and fatigue that it took every ounce of energy I had just to sit on a chair. The good part was that the event took place in a hotel so I was able to periodically go to one of the rooms to use the bathroom, sit down for a few minutes, and take a few private moments before once again entering into the public domain. The other good part was that I knew should I have an emergency, I had some of the best gastroenterologists in attendance who I am sure would be able to assist me. But even so, the risks and decisions from the littlest to the biggest all were made on the basis of my health ... how much I was willing to push ... to accept ... to deal with ... and to endure.

After the symposium, my health totally crashed. Every symptom has intensified to a new and heightened degree. New symptoms have emerged. Life has become even more challenging. Perhaps it's just a coincidence and it would have happened now any way, but I may never know ... it's the unpredictable nature of digestive motility. The important thing is that I took the risk knowingly and carefully thought out. And with tremendous faith and the inspiration of all those who suffer from digestive motility diseases and disorders, many of the risks that I am willing to take outweigh the potential consequences.

Just recently, I heard from a member of AGMD who had many concerns about traveling out of state to see her family. How would she do on the plane? What about eating? She brought her own food, but still, there were concerns about how others would perceive this. Away from home, she had fears as to what if her symptoms became exacerbated? The visit ended up being a success and "uneventful." Another victory! A risk taken and overcome.

Being in the comfort of one's home, patients can often find some solace. There is routine, there is familiarity, and there is no embarrassment. There are still decisions to be made and risks that must be evaluated, but somehow, many of these can become less daunting when one is in his/her own familiar setting. As the song goes, "Be it ever so humble, there is no place like home."

Thursday, April 30, 2009

"But You Look So Good" ... Mixed Signals

How many of us have been told that "we look so good" as we struggle in public with the daily symptoms of digestive motility disease? I posed this question at one of our recent monthly Massachusetts AGMD Digestive Motility Educational/Support Group Meetings. Everyone in attendance responded by raising their hands, nodding their heads and reacting knowingly with their eyes. Ironically, people tend to say this when you are having one of those days when the struggle with your illness is more intense. So many patients have told me how much words like that anger, frustrate, and hurt them because what they are physically and emotionally going through on a daily basis is not recognized by others.

I have thought about this for quite some time over the years ... why do people feel compelled to give a testament as to how one looks when they know that someone is dealing with a chronic "invisible" illness? Is it because they find that this is complimentary and it will make someone feel better? Are they just vocalizing out loud what they are thinking? I'm not sure I have the answer after all these years. It's not as if they are complimenting you on as to the shoes you have on, or the outfit you are wearing or your hairstyle or glasses ... no, it's about your face, your weight, and many other assessments that register in people's minds upon seeing someone.

When I first became ill and my weight plummeted to 69 pounds, people looked at me with pity, fear, and with an uncomfortable glance. It was assumed by many that I was suffering from anorexia nervosa. I was judged by my appearance even though I desperately wanted to eat and my mind was in a state of anguish over a battle between wanting to eat, trying to eat, and excruciating and debilating symptoms resulting. I was judged, as many are, not only by those in the medical community, but by co-workers, friends, and even some relatives.

I can recall during one of my hospitalizations at this time, when every morning a nurse would wheel in the scale and have me step upon the base. I was praised if I gained a pound and reprimanded if I lost one. All of my other symptoms did not even seem to be considered as I was judged solely on my weight … how I looked. Later, when I gained weight as a result of hypothyroidism, I was assessed again and people thought that I must be feeling much better and I was over any eating difficulties that they assumed I had.

How can you barely consume any food or calories and still gain weight with many of these digestive motility diseases and disorders? This question seems to even baffle many of the medical experts.

Throughout the years, my weight has yo-yo-ed between pounds lost, pounds gained and weight stabilized. I have experienced the reactions of all perspectives from all types of people both medical professionals as well as lay people, and to this day, I am still judged by how I look. So many digestive motility patients have vented their frustrations to me regarding their weight, how they look, and the public’s reaction. It can be extremely frustrating.

To complicate the matter, however, is the fact that many of us do not reveal in public the intensity of our suffering. I am guilty of living somewhat of a private life. My public persona is such that I am always smiling, always happy and pleasant, and always camouflaging the realities of my diseases. When I visit doctors, I am typically stoic, strong, and smiling. When I am at home, however, the mask is lost in my private world of debilitating and anguishing symptoms. Although I still try to smile reassuringly at my husband, we both know that behind the smile my body is continuing to decieve me with the presence of a myriad of intense and severe symptoms that now have become such a familiar part of our lives.

Many women will wear make-up, get their hair done, and wear nice clothes just so that they will feel better about themselves, but again, much of the public views this as a sign that they are not very ill. One word or one judgemental look, can often times send someone into the depths of depression, frustration, anger, bitterness, and/or saddness.

So how can others understand when so many of us tend to hide our symptoms in public? How can others understand when we tell them what we go through, and yet, by looking at us, they would never know? This is one of the challenges that goes along with living with an “invisible” illness. Be reassured that although many people with digestive motility diseases and disorders are severely compromised by low weight, there are others who are of normal weight, a little over weight, and even obese.

I’m not sure I have an answer to the questions that I posed. I have, however, had well over 30 years of dealing with my illness to learn how to cope, adjust, and react to such statements and judgments. Perhaps it's because my illnesses have a name ... a definitive diagnosis ... that I am able to let such commentary not get to me anymore. Or perhaps it is because I am now a veteran with a history of many battles and scars from the world of digestive motility disease.

I typically use humor or deflect the focus off of me and onto them when such comments are made. In most cases, people do not mean any harm by telling you that you do look good. The frustration and anger that I once used to feel has softened through the course of these years and so I gracefully reply, “thanks, you do too!” For I am far too busy trying to survive as I continue to hold on by a thread. And I am also, far too busy counting all my blessings to be distracted by comments and judgements by people who just don't understand.

I welcome your comments and experiences on this subject.

Wednesday, February 4, 2009

Thirty Years Living With Digestive Motility Disease

This month marks the 30th anniversary of when chronic idiopathic intestinal pseudo-obstruction (CIIP) or (CIP) invaded my life. It is nothing short of a miracle that I have lived all these years by defying all odds and living far beyond what the medical experts had predicted. I am truly blessed. Some would say that I am an enigma.

It is difficult looking back at my life … not the life before my illness, because I have wonderful memories that I treasure during my pre-illness years … but rather when my life changed because of CIIP.

I’m sure so many others have followed a similar journey into the world of digestive motility disease. Perhaps, like me, it took you many years and numerous physicians before finally obtaining a diagnosis. Perhaps you too were not believed … were misdiagnosed and told that you had either a spastic colon, were merely suffering from stress, that your symptoms were all in your head, that you had anorexia nervosa, or that you wanted attention. Perhaps you too felt the pain of loneliness and hollowness as you sat in the bathroom for hours, had unrelenting nausea and vomiting, had excruciating pain, had your belly swell, had difficulty eating, and had nowhere to turn for relief. Perhaps you too had to deal with all the loses … saying goodbye to eating normally, saying goodbye to a career, saying goodbye to financial stability, saying goodbye to spontaneity, saying goodbye to all the dreams that you once were aspiring to achieve and saying goodbye to the healthy life you once knew.

Growing up, I never would have thought that my life would have taken this course. All of us with CIIP have gone to boot camp as we learn to survive and become veterans in our battle with illness. Although in some cases, CIIP remains in one particular area, in other cases, such as mine, it progresses and consumes the entire digestive tract. In fact, after all these years, it has manifested itself in different ways throughout my entire body.

As many of you know, along with CIIP, I have gastroparesis, gastroesophageal reflux disease, diffuse esophageal spasm, achalasia, dysphagia, malabsorption, malnutrition, pernicious anemia, and a myriad of nondigestive diseases. A complex medical history is not unique among so many of us with CIIP. In my case, there is no known cause as to why, at the age of 27, I became so ill. The frustration lies in all the unanswered questions.

How distressing it is that since the initial invasion of CIIP into my life in 1979, there is still so little known about the disease. There is still minimal research, no adequate treatments, and no cure. So few people are even aware that the disease exists. In fact, there are many times throughout my life that I have had to come full circle and have found myself just like I was at the beginning … trying to convince others that I have a disease … that the reason why I can’t eat is because of the pain, nausea, vomiting … and all the other symptoms associated with progressive CIIP. In these circumstances, the same feelings emerge from me … the ones that I keep buried because of their painful reminders of the past.

After thirty years, I must say that my body is truly fragile and broken down. The struggles have become more numerous and more intense. But make no mistake, I am still grateful for every day … every moment … for everyone in my life … and for all the things that I’m certain, so many people take for granted.

My dreams have certainly changed throughout my journey of life. They now focus on the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) and helping others. I now dream of giving patients more to cling to than the support of each other ... of giving patients treatments that will enable them to live a quality and productive life … of giving them more diagnostic centers so they will not have to wait months or even years before finally being diagnosed, and ultimately, giving patients cures so that they can chase after dreams of having a normal and healthy life.