Saturday, November 21, 2015

Feast Your Eyes on a Gastroparesis Holiday

This holiday season, as you prepare and eagerly await your gatherings and feasts, please remember the gastroparesis community. Far from being a festive season, this can be one of the most challenging times of year for us. The physical and social aspects of dealing with this cruel disease make many wish we could hide from the holidays rather than incite us to join in the celebration. And though we are glad our families and friends can savor the wonderful treats associated with the holidays, we long for a gala where food takes a backstage and sharing each other’s company becomes the star of the event.

Thanksgiving is particularly difficult as it is a holiday that largely centers around the feast itself.  Many in our community cannot eat at all and most are very limited in what they can consume.  Can you imagine observing all the food that appears on television, on billboards, in social media feeds, and in various public arenas at Thanksgiving time and not being able to consume even a few bites of it?  Can you envision watching everyone else seated at the table, enjoying beautifully crafted homemade meals lush with every food you dream about every single day while you sit to the side, unable to taste it?  It is painful – physically and emotionally.  We long to join in your events, but the temptation to eat that which we cannot is sometimes overpowering.  At times, even the smells of the foods at such events keep us away.  Since nausea is a major concern, the aromas filling your houses are often intolerable to us.  And we worry that we will not have unfettered access to your restrooms should they be required. Not a pleasant topic perhaps, but these are the joys of our physical symptoms.

Many of us are unable to participate in holiday events and family get-togethers due to the ever-present physical symptoms of our illness and the sheer fatigue that accompanies it. We are, quite simply, too sick and tired to make it to the party.  Because we are worn down from battling pain and nausea, and because most of us do not consume nearly enough calories to meet our nutritional needs, we often do not have the energy required to dress up, ready ourselves, make the trip, and spend long hours socializing at a holiday event.  We cannot afford to waste precious energy needed for our survival on these lovely but unessential “extras.”

Emotionally and mentally, this brutal disease takes a toll on us at this time of year. We long to be included, but we do not know how to make you see that we cannot celebrate in the same fashion as most of you.  Some of us find ways to cope, perhaps by bringing our own food (or other source of nutrition) to your event, by coming late and/or leaving early, by distracting ourselves with alternate activities while the rest of the party-goers dine, or with the help of another such creative diversion; however, some of us cannot bear the effort and sacrifice this requires and choose not to attend. 

Please try to understand that when we pass up invitations or do not "like" your posts regarding foods and holiday parties, we are not being unkind, and we do not wish to avoid you.  We only want to escape the things that make dealing with our condition more difficult.  Believe it or not, we do not like to see our family and friends uncomfortable.  We are well-aware that we can be an inconvenience and a source of guilt for those who cannot help us and who feel bad for partaking in the dinner while we watch from afar.  We do not wish to see our loved ones enjoy the festivities any less because of our presence.

What we would like, and what you can offer is, first and foremost, sensitivity to our plight.  We miss our old lives and long for things to be the way they were prior to diagnosis.  We struggle greatly to accept that our lives will never return to the “way things used to be,” and we sometimes get lost in those sad moments.  We are capable of happiness at this time of year, but we might forget that for a brief instant, and it sometimes takes great effort on our part to remind ourselves that we can still have joy in our new post-diagnosis lives.  We fight to find substitute sources of delight and focus on what truly matters.   

In addition, you can help us by offering alternatives and minor accommodations.  Perhaps friends and families might be willing to oblige us by allowing us to bring our own foods/nutritional supplements without feeling insulted when we “refuse” to taste your culinary creations.  Or perhaps you might permit us to come at an earlier/later time or stay only a few minutes so that we miss the dinner portion of the event and do not exhaust our limited energy resources.  We do not wish to insult you, and we value your company, but “just a few bites” of an unsafe dish or “just a few more minutes” at the party can leave us in agony for days after the event.  We are sure you would not wish this for us.  And if you are feeling especially sensitive and accommodating, perhaps you might consider holding a completely separate holiday affair which does not include food in any form – a second event just for us.  Or maybe you would like to leave the hustle and bustle of the holiday party world for a brief spell and have a quiet visit with us in the comfort of our own homes.  We know this can be an inconvenience, but we miss you and would love to see you when we are feeling up to it.

We do not expect (nor want) you to give up the traditions and events that you have always enjoyed at this time of year.  We ask only that you understand that we often mourn days past and long to have those times back again.  We hope you will consider finding ways of including us (and our post-diagnosis bodies) in the holidays. After all, it isn’t really about the food.  Isn’t it truly family, friends, and good times spent enjoying each other’s company that make the holidays special? 

Happy Holidays!

Monday, October 5, 2015

What Does "Right Care" Mean to Me?

The Lown Institute is organizing a "Right Care Action Week" (#RCAW) for October 18-24, 2015.  I applaud their efforts and their dedication to "transforming the culture of medicine and building a healthcare system that is affordable, effective, personal, and just." This blog is my attempt to describe what "Right Care" means to me and (hopefully) to the gastroparesis community as a whole.  For additional information regarding RCAW, please visit the Lown Institute website at and view the specifics of RCAW at  Won't you join the fight to create a better healthcare system?


What does “Right Care” (#RightCare) care mean to me? It means a world in which everyone involved in my life – loved ones, medical professionals, insurance and pharmaceutical companies, policymakers, and even the media – work together to treat me as a person, listen to my concerns, and collaborate with me on my health needs, treatments, and goals. It means a health care system in which all in the Gastroparesis (#Gastroparesis) community are believed and taken seriously, treated with compassion, and respect, and valued as human beings with hopes, dreams, and goals.

It is a world in which we are able to find doctors/specialists who are educated about and understand our condition and who are near enough that we are not forced to travel long distances to see them. It means being able to schedule an appointment when we need to be seen and not having to wait months on end, in pain, before our needs are addressed. It is a world in which doctors stop treating us as hypochondriacs and drug-seekers, and instead, begin to help us understand our options and work with us to find a treatment plan that actually improves our quality of life. It is a world filled with doctors who do not push us out their doors because we are "too complex" and there is "nothing more" they can do. It is an ER where the medical staff does not turn us away, leave us in agony, and offer us no relief, hope, or alternatives when we turn to them in the midst of our fear, crisis, and pain.

Furthermore, it is a system under which the FDA and insurance companies stop denying us necessary treatments that we know from personal experience help us with our symptoms – one where we are free to make our own choices and weigh the risks of such treatment for ourselves. It is a system where pharmaceutical companies search diligently for safe, more effective treatments and cures and do not charge outrageous prices for our life-saving drugs.

It is a world in which government officials, policymakers, and agencies show respect for the seriousness of our illness and the consequences that flow from it. It is one in which research, education, and awareness activities are supported and funded by the powers that be. It is a system under which Gastroparesis is treated as the devastating disability we know it to be.

And finally, "Right Care" is a world which includes loved ones, the general public, and media outlets who attempt to understand, support, and help spread awareness of our disease. “Right Care” includes family and friends who believe we are truly ill and who do their best to accommodate our situation, who understand when we cannot do everything asked of us. It includes members of the general public and media who do their best to see us as we truly are and assist us in getting the help we so desperately need. It is a world where we are not overlooked, taken for granted, mocked, or scorned; rather, we are heard, cared for, and valued by all those who can help us spread our message.

All of these bodies must work together for our well-being.  This is "Right Care!" This is what we fight for!



I ask you to please read the following blog and watch the video. (And, if you are willing, please share them.) I have tried to portray our situation honestly and completely and to convey our needs. This is my best attempt to help all those involved in the health care system to understand our daily struggle with gastroparesis. It is my plea to get us the help we need, to be heard by the people who have so much influence over us and who could make such a great difference in our lives. Thank you!

Saturday, September 26, 2015

Invisible Fight

I have tried for weeks to write an article about invisible illness, about my invisible fight.  You see, this week, September 27 to October 3, is “Invisible Illness Awareness Week,” and I want to contribute in some meaningful way; yet, I continue to struggle with the concept.  Oh, I know the definition of “invisible illness” – a condition that significantly impacts the diagnosed individual but that is not obvious to others – but this is an incomplete and somewhat inaccurate description.  My invisible illness, gastroparesis, is indeed indiscernible to some… but not to all.

First and foremost, it is readily apparent to me.  I wake up every morning facing a day of pain and fatigue.  Because my stomach is paralyzed, I cannot eat.  To do so causes me immense pain.  So, my days are spent trying to avoid food while still somehow managing to meet my nutritional needs.  I am malnourished and exhausted much of the time.  I look in the mirror, and I am met by a skeleton.  I do not recognize the person who stares blankly back at me, this stranger who lacks my (former) vibrancy.  I have a clear view of my illness, every single moment of every single day.

My illness is evident to most of my family and friends as well.  They see my shrinking frame, and they are well aware of my new limitations.  They are not blind to or untouched by my illness.  They notice that on the few occasions I am out, I cannot participate in meals, and I lack the energy to join in many of the festivities.  It is often plain to them that I am fighting pain and nausea.  Many times, they can detect that my smile is not quite real, that my eyes aren’t shining quite as brightly as before.  This is especially true for my immediate family.  My husband and young daughter do not think my illness (or at least the effects of it) to be invisible when they are forced to take on extra household tasks and run errands that I can no longer complete.  They “see” my absence quite clearly during my daughter’s events and performances, the times when my husband must act as both father and mother to my daughter.

No, my illness is not “invisible” to me or to those close to me.

Why, then, is it invisible to the others?  Why do many doctors look past my condition as if it weren’t staring them in the face?  How can the general public pass by me on the street without so much as a second glance?  Why do the insurance and pharmaceutical companies, the policy-makers, and the media find it so easy to look past me and deny my existence?  Why is my plight and the plight of so many others like me dismissed so easily?  Where is the empathy, the compassion, and the willingness to help the invisible ones?  When I ask myself these questions, I come to believe that perhaps my illness is invisible after all – and this deeply saddens me. 

But I am not without hope.  These people – the “others” – might not be willing to open their eyes to me, to my illness, but perhaps they will open their ears and hear me.  If I am loud enough, persistent enough, and I refuse to go unnoticed, maybe I can one day make myself and my fellow strugglers known to them.  Yes, this is my “Invisible Fight” – to make the unseeable, seeable. 

Here is my plea: 

Sunday, June 21, 2015

Behind the Scenes at the Mr. Rob Thomas Concert

I absolutely loved the Mr. Rob Thomas concert in Indy this past Tuesday evening.  I counted down to it on my Facebook wall and in my Twitter feed for 67 days.  It was one of the most exciting events I have ever attended, and I describe it to my friends as "perfect."  I am, if you can't tell by now, a HUGE Mr. Rob Thomas and MB20 fan.  Always have been.  The first concert I ever attended in my life was a Matchbox 20 concert in Fort Wayne a couple of years ago, at the age of 46!  I got to meet the band and had pictures taken with all of them.  Beyond exciting!  So, needless to say, I was highly motivated to attend this concert and looked forward to it from the day I heard about it.  Couldn't wait to show off my pictures after it was over.  Almost everyone has seen them by now.  But what they haven't seen, and what I haven't let them see, is what it took for me to get to that concert -- and the consequences for someone like me, living with gastroparesis or maybe another chronic illness, of undertaking an outing such as this.  They aren't privy to what happened "behind the scenes" of the concert.

It started the day I heard Mr. Thomas would be touring -- the worry, the fear, and the hope that despite the effects of my illness I might be able to attend.  You see, because of my gastroparesis, I cannot eat, and this causes all sorts of issues that most other people never have to experience.  Every time I consider going to an event, I fear that I will be too sick to actually attend.  I don't like dealing with that disappointment, but what I like even less is disillusioning the friends with whom I have looked forward to enjoying the evening.  I have let them down so many times already that I am surprised they agree to include me in anything.  But I have good friends, friends who understand and are sympathetic to my plight.  They tolerate my shortcomings.

When I am 67 days away from the concert, I can pretty successfully ignore my worries and fears, but as the days fly by, it becomes more difficult.  I know that during the week or two before the concert, I will have to eat less.  If there is any chance of making it there, I must eat as little as possible so that the likelihood of nausea and pain on the actual concert day will be lessened.  Food equals pain and nausea, and that equals missed events.  So, I limit my already meager intake of sustenance even further.  By concert week, I am pretty run down.

The night before the concert, I eat and drink practically nothing, and on concert day, I eat nothing at all, not a single bite, and drink only what is necessary to keep me from being dehydrated -- can't chance missing Mr. Thomas and disappointing my friends.  I am drained from days of food deprivation, and this day is almost unbearable.  I find I am shaky, dizzy, and weak.  Every time I walk into the kitchen and see the food, I long to take just a bite.  I make my family lunch, and I can smell the food.  I want so badly to sit down with them and eat just a little.  If I do, though, I will be in agony.  I will get nauseous, be in excruciating pain, and likely bloat up to the size of a 9-month pregnant woman.  I am miserable, but I am determined.  I hardly ever go out, and I know I won't get this chance again anytime soon.  I suck it up and move on.

I pick out an outfit and start getting ready to go.  As I comb my hair (which continues to thin due to malnutrition), I take a good look in the mirror.  I think I am hideous.  I look like a skeleton.  I barely recognize the person staring back at me, and I hate what I have become.  I can comb her hair, put a nice outfit and makeup on her, but I cannot make her what she was a year ago.  I cannot change this.  It saddens me, but I do the best I can and try to convince myself that I won't scare small children with my appearance.

My husband and I decide to arrive at the venue a little early because I really would like to get a picture with Mr. Thomas.  There is a slim chance of this, but I am willing to give it a go.  It is scorching outside, and this adds to my misery.  Hot, weak, and shaky -- not a good combination.  My husband helps steady me.  The security guards at the venue are incredibly friendly and helpful (really!).  They point to a spot where I can wait for Mr. Thomas, and I stand there for a bit until he finally arrives.  (Yep, I got sunburn, too!)  He is such a gentleman, so friendly, and he lets us take a picture.  Yay!  Success!  Despite my hunger and weakness, the day is wonderful so far! We meet up with our friends and prepare for the concert.

As I stand outside the closed doors to the auditorium, my legs shake with weakness.  My husband holds onto me and reassures me that we will be able to sit soon and that I WILL make it.  I can smell popcorn in the lobby, and I long to have some.  I love popcorn, but I haven't been able to eat it (not even a bite) in more than a year.  People pass by enjoying this delicious, buttery treat, but I can only watch -- and savor the smells.  I am thankful when the doors finally open so that I can focus on something else.  We have front-row center seats this evening, and I will be able to concentrate on only what is in front of me -- the stage and the band!  No crowd-watching from this point on, and I am glad.

I concentrate on appearing as and behaving like a "normal" person.  I do not want anyone to know I am sick.  I don't want my friends to worry.  I don't want to take away from their enjoyment of the evening.  I don't want to cause a scene.  I silently pray that I will not vomit or faint or reveal in any way that I believe I am at the end of my rope here.  I smile, laugh, and joke as if nothing at all is wrong.  I am happy, and I want it to be that way, so I pretend, and sheer will-power gets me through.

I enjoy the opening acts (Vinyl Station, which is a fantastic group, and the Plain White Ts), but I am actually thankful when their portion of the show ends because I am wearing down quickly, and I want to see Mr. Thomas perform.  When Mr. Thomas takes the stage, I disregard all the difficulties it took to get here.  I ignore my weak, shaky legs, which I can no longer really feel and which can barely hold me at this point.  I grab onto the stage floor in front of me and I thoroughly enjoy the next 2 hours.  (I had to sit a couple of times, but, for the most part, I made it!)  For just a brief spell, I forget all the agony and worries in my life.  I delight in the time I have with my friends and spouse.  I relax and let go of my pain for a bit.  I know I will pay for this later, but at this moment, I do not care.  It has been months since I have been out for anything other than a medical appointment or mundane errand, and I am having fun -- fun -- not something we experience in our house very frequently anymore.  I am ecstatic.

All too soon, and yet way too late, the concert ends.  As I make my way back to the car, leaning heavily on my husband to steady myself, I begin to think about the consequences of this evening out.  Tomorrow I will pay for this dearly.  I spent weeks preparing for this and many days depriving myself of even the basics, knowing that when this was all over, I would be in worse shape because of it.  I know that tonight I will collapse, and tomorrow I will have to begin to try to erase the ill effects of this evening and the rough days leading up to it.  I will eat what little I can tomorrow, and it will be harder than usual to tolerate it.  I will begin to try to make up for the calories I have lost, but I know I will never be able to.  It doesn't work like that.  I will suffer from exhaustion and pain from pushing myself considerably beyond my limits.  But most of all, I will face the mental anguish of knowing that my life must return to this "new normal" -- to this place where I am homebound, where I must spend every day trying to balance my physical need for food against the pain it causes me, where I must deny myself the basic needs everyone else takes for granted because I cannot live with the agony it causes me when I partake, and where I spend all my days online advocating for others who must live with this disease.

But tonight?  Tonight I am "Overjoyed."  :)

All of us before the concert
My best friends and I

My husband and I
Mr. Thomas - from the front row!
Yep, I got my picture!
Front row with my sister & best friend
I am happy!

Me with Mr. Thomas 2 years ago

Wednesday, June 3, 2015

Top 10 Reasons I Know I am in a Hospital and Not a Hotel

Well, I am angry, and when I am angry I should never write.  I know this, but I cannot help myself.  I just read an article about who best understands patient satisfaction – doctors and nurses or hospital administrators ( (My answer is “neither,” but that is a topic for another day.)  Anyway, the point of the article was largely lost on me when one nurse commented, “A hospital isn’t a hotel; patients shouldn’t expect to be pampered.”  Wow!  We patients are, of course, all demanding, spoiled children who come to the hospital only when we need a break from the hardships of everyday life and are looking for a place we can slack off and get some rest, while having a dedicated staff attend to our every whim.  Who would dream of going to such a facility when truly ill?  So, here is my response…

Top 10 Reasons I Know I am in a Hospital and Not a Hotel

10.    I hear beeps, intercom messages, and “code” announcements every 10 seconds.

9.     Five different nurses just tried 5 times each to start an IV in my already sore arm.

8.     I am confined to my assigned floor and can only walk a small square of hallways while
        pulling my IV pole alongside me.

7.     I am drinking Protein Ensure rather than eating a 5-star meal.

6.     Instead of a sun hat, I have a “hat” which measures my urine output every time I use the   

5.     My clothing has no back side.

4.     “Room service” personnel do not come quickly when I call, and when they do arrive, they
         do not seem to understand the basic rules of customer satisfaction.

3.     An aide turned on the overhead and bed lights without warning at 3:00 AM so that she could 
        take my blood pressure for about the hundredth time today – and then told me I should
        really get some sleep.

2.     Someone just stuck a rather unpleasant tube down my nose to pump my stomach.  

1.     I am paying far more for my stay here than I would in even the finest hotel.

Tuesday, June 2, 2015

Just a Patient Trying to Understand

I have thought a lot about patient engagement over the last year.  It is something I never really considered prior to being diagnosed with gastroparesis – never really had to.  It is a priority topic now, though.  Patient engagement largely refers to patients being involved with their own healthcare.  It includes becoming informed about your condition, actively pursuing medical care and interacting with medical professionals involved in such care, and doing all you can to prevent and control your illness.  You will often see it listed side-by-side with the term “shared decision-making.”  This means that a patient works in conjunction with his doctor and other healthcare professionals to determine what the best approach is to treating his illness. And while it is all well and good to discuss your own role as a patient in this strictly medical side of the patient engagement equation, I believe we are remiss if we fail to consider another important factor in this equation: policy issues and the effect of governmental and regulatory bodies on your ability to engage in your own healthcare.  Let me be blunter: How is a patient supposed to “engage” in his own health care if he cannot even understand or be included in the processes which ultimately affect the choices available to him?

In my view, patient engagement (and patient inclusion) should refer to more than simply having conversations with doctors and attending medical conferences.  It must also include engagement in the process and policy development that ultimately affect your health and your ability to treat your condition as you see fit.  It must include having a “place at the table” during governmental and regulatory body meetings, conferences, and discussions.  But more than that, it must include being able to understand that process before ever being engaged in it – and here is where it gets tricky.  What newcomer can possibly understand all the factors that affect healthcare?  Don’t these bodies have an obligation to make the process both understandable and accessible to the general patient population?

I will offer two examples of the uphill battle for information that we in the gastroparesis community face.  The first involves a medication called “Domperidone” which many take, but which is currently not approved by the FDA.  I was told about this drug when I was first hospitalized and diagnosed.  I was informed by the doctor at the hospital that this drug was not FDA-approved for everyone, that I had to get it from Canada, and that it came with serious heart risks.  I refused this drug at first, but as my symptoms became truly life-threatening, I changed my mind.  I called my doctor and asked to be put on this medication.  Not that simple!  He informed me that I needed an EKG to make certain I did not have pre-existing heart issues that might prevent me from taking it.  He also informed me that since the drug was not FDA-approved except under certain conditions, he would need a little time to complete information with the FDA so that I could have a prescription.  He also told me that I could expect it to take anywhere from two to six weeks for the medication to take effect.  I assumed I would have to order the drug from Canada, as I was told in the hospital (which would mean further delays), but my doctor told me it could only be obtained in the US – from one pharmacy in Texas.  After a couple of weeks, I was finally able to get my Domperidone, and fortunately for me, it began to take effect within the first couple of days.  It has kept me alive; there is no doubt in my mind about this.  Now, this doesn’t seem all that traumatic until we fast forward a few months later to a situation I encountered in my GP support groups.

I began to read posts about people who had been getting prescriptions of Domperidone filled but were suddenly being cut off, with no warning and with no advice as to how to obtain it.  It seems that they were getting their medication from non-FDA approved pharmacies, but since some sort of new FDA crackdown had begun, these pharmacies were now being fined and forced to stop distributing it.  Another segment of people in the group had been going to a pharmacy overseas to obtain their Domperidone – without a prescription – and were suddenly running into issues with this as well.  Misinformation was running rampant.  Some began posting that the FDA had suddenly banned Domperidone and that no one would ever be able to get it again.  All were begging for help and information regarding if and how they could legally obtain their Domperidone.  This was a very serious situation, as many of us believe our lives literally depend on continuing with our Domperidone.

I had already done some research on the Domperidone situation.  I had previously consulted the FDA website and learned all I could about how and why it was restricted.  I had learned that it could only be obtained as part of the Investigational New Drug (IND) program, that doctors were required to complete a packet to be able to prescribe it, and that only patients who had “failed standard therapies” and suffered from one of a list of conditions found on the FDA site could qualify to take it.  I challenge anyone to read and make sense of this section on the FDA site (  I suppose it could be more confusing, in theory, but I do not know how.  God help the person who does not have a Ph.D. and/or a medical background in trying to decipher this!  In any case, I could find nothing about which pharmacies were allowed to distribute Domperidone.  I recalled the doctor in the hospital saying there were pharmacies in Canada that could do this, but my personal GI had said only the pharmacy in Texas could do this. 

Wishing to help clear up the matter, and to assure my groups that Domperidone had not been banned entirely, I called the FDA – not just once, but four separate times.  I was given four different answers each time I called.  My first challenge was to reach a real individual with whom to speak.  I had to go through a series of options during the phone call, and each time I chose the wrong one, I failed to reach a human being and had to start over.  I finally managed to select the correct sequence of choices that allowed me to reach an actual person, and I was told that there were three pharmacies that could distribute Domperidone, one in the US, one in Canada, and one in the UK.  The FDA representative could not reveal the names to me; I would have to get those from my doctor.  (Apparently this is top-secret information!) 

Some people in the groups questioned this information when I reported it, so I called the FDA a second time.  This time I was told by the FDA that they could not give me an actual number or list of pharmacies allowed to distribute Domperidone, but that this information was in my doctor’s IND packet, and he could provide me with it.  I continued to receive new questions and challenges in the groups, so I called a third time.  This time, I was told the same thing I was told in the first call – three pharmacies, one in Texas, one in the UK, and one in Canada.  Again, the representative said she could not give me the names. 

I took the information back to my groups feeling pretty confident that there were indeed three pharmacies where we could obtain our Domperidone.  I was hoping the matter would be closed at this point and that people would contact their doctors for more information.  People did call their doctors, but they began complaining that their doctors were telling them that they had no idea which pharmacies were FDA-approved to distribute Domperidone.  Their doctors, as it turns out, in almost every case, had been writing prescriptions to non-approved pharmacies, and these pharmacies had been filling them without hesitation.  So, I placed a fourth phone call to the FDA with the intention of demanding pharmacy names.  Guess what?  The fourth representative I spoke with told me that contrary to what I had been told the first three times I had called, there was only ONE pharmacy from which we could obtain our Domperidone and that was the one in Texas.  She told me that the Texas pharmacy could obtain it from Canada or the UK, but that we, as patients, had to get it from the pharmacy in Texas. 

Can anyone honestly say for sure what I should do at this point?  What should I tell my groups?  The last representative with whom I spoke assured me that she indeed was the one giving me the correct information, but she seemed unconcerned that I had received “false” information from the previous three representatives.  She also seemed less than upset that I could not get this basic information, in any kind of understandable format, from the FDA website.  It did not bother her that I was walking away without yet having the name of the pharmacy we were “allowed” to use.  She did not take any interest in my stories about people being suddenly turned away from sources where they had previously been able to purchase their life-saving Domperidone with no indication as to where they should now turn.  She did not seem disturbed by the fact that doctors and pharmacies, in large part, do not know the rules regarding Domperidone prescriptions and sales.  It did not bother her that I objected to being offered only one choice of pharmacies, and she told me plainly, “It shouldn’t be an issue.  You won’t pay significantly more.”  Excuse me?  Do we actually believe in the market system here?  And please don’t tell me what “shouldn’t” be an issue for me!

The FDA could easily clear up this whole situation.  They could, of course, approve Domperidone.  Short of that, they could post a clear and easily understandable explanation on their website as to how and where to obtain Domperidone.  Why do they refuse to do this?  How can I participate in my own healthcare when I cannot easily obtain basic information?  I am not a healthy person.  The people in my groups are not healthy people.  We struggle to get through the day under normal circumstances.  How can we spend hours of our time facing these sorts of obstacles?  And in the end, after all my efforts, I still cannot be certain if I have accurate information regarding a situation I have tried to resolve FOUR different times!  Surely I am trying to be an engaged patient.  Am I not?

(To the FDA’s credit, I will say that gastroparesis was included for the first time in the FDA Functional Gastrointestinal Disorders Patient-Focused Drug Development Public Meeting on May 11, 2015.  We were represented by a few panelists who suffer from this diagnosis and we have been allowed to make public comments via the docket.  This is a good start.)

This is but one example of the difficulties we face.  Please allow me to give you another.  Many people in my groups wish to get gastroparesis listed as a disability in and of itself in the SSA’s “Blue Book” so that they are not forced to qualify for SSDI under provisions of a separate condition or based on equivalent severity of symptoms.  (Please forgive me if I do not speak as clearly as I would like about this situation, as I do not yet fully understand the complete workings of this whole disability system.)  In an attempt to ascertain how we might influence the policymakers and fate-determiners in our favor, some members of our advocacy group have been researching websites and writing to various policymakers and organizations in an effort to discover who really has control over which conditions make it onto this disability list.  After months of contacting governmental, medical, and advocacy sources, we still have little idea where we need to direct our “lobbying” efforts. 

We first targeted Congress and the SSA.  We were told by each that they were not really the group we should be contacting.  We were told at one point to contact state level Disability Determination Services agencies.  We were then told by a particular congressman that we should be contacting the Institute of Medicine (IOM).  None of us had ever heard of the IOM.  Nevertheless, we started looking into this information, and we found that this might indeed be a helpful path.  We took note of their next “open” meeting and tried to get involved.  We were informed that we could not comment at their upcoming meeting and that we could not view it via webcast.  We did have the option of calling in or attending in person (with security clearance), but since most of us cannot travel due to our illness, and since the meeting was an all-day event, these were not very viable options. 

So, at this point, I would simply like to know how we are to be heard and participate in this process.  How is it that an advisory committee can determine our fate without ever even hearing from us?  Yes, I understand that they seek input from physicians and that they research the current literature and studies regarding our disease, but they also need to consult us.  They need to get a clear picture of what we endure on a daily basis!  I have read on their site that they are tasked with holding public outreach meetings where we may speak, but I cannot find the details regarding how this process works or when it will come about.  Why should it be this difficult to determine the course we must take to be an influencing factor in the processes that affect our own lives?  Why can we not find a straightforward path to participating in our own care?  Why can this not happen?  I believe it easily could if only the parties involved were willing to be upfront with information and truly sought to include us.  Where is the outreach?  

These are but two examples of the struggle we face in trying to be heard and considered in matters that directly affect us.  I could give endless additional illustrations.  There are boards and agencies, bills and regulations, policies and rules, and on and on and on – all affecting our very lives!  Barriers, obstacles, and mazes of information abound!  We are told to take an interest in our own healthcare, to participate and be proactive, and though that is possible to an extent, it is far more difficult in some areas than it should be.  I am simply an inexperienced patient who, until a year ago, had never dealt with anything healthcare-related.  And now I am trying to navigate some pretty harsh waters under less than ideal circumstances.  We in the gastroparesis community are all very sick people who have little knowledge of processes and policies and who have little energy to fight; yet, we show up every day and continue to battle.  We believe in patient engagement at all levels – including policy level.  Could we get a little help, please?

Saturday, May 30, 2015

Starving for Help

I had a good week, a very good week. I probably managed to consume between 500 and 600 calories per day this past week, every single day. I thought I was doing so well. I was feeling pretty good this evening, so I decided to take a couple of bites of a cookie – merely a couple of bites, not the whole cookie. I am doubled over in pain now, and I am in tears. It is agonizing. Who would believe this kind of pain could stem from tasting a couple of bites of food?  I only wanted to taste a cookie. I miss food. I want to eat… I just want to eat!  I want to have a normal day again, just once – one normal day, the way it used to be.  It has been more than a year now since I have been able to consume a meal, and I don’t think I will ever be able to eat one again.  I have a pretty good attitude toward my life and my circumstances, but the fact remains that like so many of my friends, I am not getting any better.  I am dying, and it is a slow death, attributable to starvation.  I am dying, and there is no help, no cure, few treatment options, and little concern about it from the media, the public, the policymakers, the doctors, and the researchers.  I am dying, and no one wants to hear it, or face it, or stop it from happening.

I know this is not what people want me to say, but nevertheless, it needs to be said.  I am not depressed, and I do not fear death, but neither do I want to die.  I am not frightened by the thought of death, but I am a little afraid of how painful it might be.  I am also terrified about what will happen to my family when I die.  I want to watch my daughter grow up.  I want to see her graduate, get married, and have children.  I want to see what career she chooses.  I want to see what sort of woman she becomes.  But mostly, I don’t want her father and her to suffer because of my absence.  I don’t want her scarred by such a traumatic experience, and I don’t want her to struggle as a result of it.  I don’t want it to change her, and I don’t want it to hinder her from becoming all that I know she can be.  Quite simply, I don’t want her to have to grow up without a mother. 

Does this matter at all to the people who make the decisions that largely determine my fate?  Does it matter to the medical world, the lawmakers, the insurance companies, or the news people?  Not enough.  Most of them have never heard of gastroparesis, and the ones who have, don’t fully understand it or decide to ignore it – dismiss it as if it is a stomachache.  Well, let me tell you, it is not just a little “tummy trouble.”  I am not certain that anyone who has not experienced this disease personally can ever really grasp the true horrors of this disease, but if these decision-makers and life-shapers could spend a week in my support groups, perhaps they would begin to comprehend the never-ceasing torture we endure day in and day out.  Perhaps then they would see what I see: tremendous physical suffering due to pain, nausea, and the inability to eat; seemingly endless doctor visits, emergency room trips, surgeries, and procedures; isolation, loneliness, depression, and resignation; financial distress and ruin.

Perhaps the medical world would understand the lack of compassion and concern we face on a daily basis.  Many in my groups are in and out of emergency rooms, must tolerate lengthy hospital stays away from their family, and are forced to endure surgery upon surgery in an attempt to simply survive.  Many of us have no effective medications or treatments and are denied insurance coverage for the few necessary drugs, treatments, and supplies we do have. Maybe after a week in my groups these doctors would see that we are frequently mistreated and even downright abused by a medical community that lacks knowledge, understanding, and/or the will to help us.  Maybe these same medical “professionals” would feel guilty for their lack of desire to help and for treating us as nuisances to be swatted away like flies, without so much as an ounce of concern – guilt over making us feel humiliated, treating us like hypochondriacs and drug abusers, and for pushing us out their doors without providing any aid or any guidance as to where we might go for assistance.  Perhaps they would think twice before leaving us to cry out in anguish while lying in a hospital bed being denied pain medication.  Maybe they would reconsider their use of phrases such as, “there is no pain with gastroparesis” and “there is nothing more we can do.”

If the media could spend a week in my groups, would they begin to understand our need to be heard?  They have no space for our stories; yet, they seem to find slots for such pressing matters as the perils of purchasing fake Final Four tickets and the opening of the latest local dog bakery.  They can sometimes tolerate the chronically ill when we have sexy, prettied-up stories or when we have overcome incredible odds to survive, when we are upbeat and hopeful, but they want no part of our messy stomach and bathroom issues, our tubes and scars, and our despair at facing starvation and ultimate death.  Perchance if we could learn to be a little more cheery about our circumstances, and pretend we are not bothered by our skeletal frames and hunger pains, we would gain acceptance.  Perhaps if we could hide our tubes and ports and PICC lines, we would be more camera-friendly.  Maybe if we could find a way to tie our stories into both local and national events, or manage to summarize our dying pleas in 140 characters or less and get enough people to “tweet” a certain hashtag, or manage to generate some sort of low-level controversy, we would get a moment of coverage from them.  Would a week in my groups change their attitude and make them more amenable to assisting us?  Would our pleas for help then cease to fall upon deaf ears?

If the policy makers, insurance companies, and researchers spent a week in my groups, would they put less emphasis on monetary concerns and more on humanitarian issues?  Would they be more willing to fund our cause if they saw how ineffective our current treatments and medications are?  Would they open their eyes to our suffering and make us a priority?  Possibly the lawmakers don’t understand that when they refuse to grant us anything beyond a tiny portion of their research dollars, no one is willing to seek treatments and cures for us.  Maybe they believe researchers work for free.  Or maybe they believe digestive disorders are not cause for genuine concern.  After all, what’s a little heartburn, gas, and bloating, right?  Perhaps, after witnessing our pain and the tough choices we must make when we cannot afford the potentially life-saving drugs and treatments they refuse to cover, insurance companies would begin to appreciate our dilemma.  Would they then understand what it is like to look forward to a surgery for pacer implantation as your last hope for survival only to be told it is experimental or not medically necessary and therefore will not be covered by the insurance company to which you have paid premiums your entire adult life?  Perhaps after spending some time in my groups and witnessing the tics, cramps, pain, nausea, and heart problems caused by our currently available medications the FDA would consider streamlining and fast-tracking drug approval or loosening restrictions on “risky” and “potentially addictive” medications.  

In the early hours of every day, I rise and head for my computer to work as long, and as hard, and as fast as I can to reach the people who might be willing and able to help us with our plight.  I sacrifice time with the family I love in the slim hope that I might be able to persuade just one influential person to notice, to care, to help us.  I panic if I must fritter away a day due to other obligations (which mostly consist of doctor’s appointments) because I recognize that this is time I will not be spending on advocacy.  I do not know how much longer my friends and I have left, so I cannot afford to squander my time.  Does anyone appreciate that we are people – human beings with the same wants, needs, goals, and desires as others?  We are struggling.  We are dying.  We are STARVING FOR HELP.  It’s not just a slogan.  Does anyone hear us?  Does anyone care?

Friday, May 1, 2015

#HAWMC Challenge Day 31: Recap

The Wego Challenge officially ends today with a prompt for participants to recap our experience.  In short, the Wego Challenge has been… well… challenging!  I realize I have this blog all set up and ready to go, but that does not make me a regular blogger.  I tend to “put pen to paper” only when the mood strikes me or when I think I have some significant information to pass along, so this business of writing every day has been an unfamiliar experience.  There have been aspects I have enjoyed, and some that I have not enjoyed quite so much, but overall, I believe the challenge has been beneficial.

One of the things I have found to be most difficult about writing a blog is generating ideas and topics.  I am not a highly creative person, so unless a matter presents itself in a way that it cannot be ignored, I likely will not think to write about it.  This past month, Wego solved this problem by providing daily prompts that gave me the chance to delve deeper into subjects important to the chronic illness community.  The prompts were so skillfully crafted that they afforded me the opportunity to address serious issues while still being a little playful.  A prime example of this is the prompt which instructed participants to create a word cloud.  It was an entertaining and enjoyable activity, but it also forced me to think about which particular words truly express and reflect the nature of my illness, and thereby still addressed an important topic.

There were other prompts that were not quite so enjoyable for me – yet they may have been just as significant to my health journey and to my community.  I found the prompts associated with food and exercise to be troublesome.  Many of us living with GP can eat very little or not at all, and because of our low caloric intake, legitimate exercise is limited as well.  I never like thinking about food, and on those particular challenge days, I did not wish to further upset my gastroparesis community by blogging about those issues.  In the end, though, I believe it was valuable to do so.  I managed to alter the prompts enough so that I could discuss the difficulties of dealing with food, eating, and exercise for those of us living with GP in a meaningful way.  I hope I was ultimately able to educate and offer perspective on our situation through these writings.

It has at times been a rough and busy thirty days of blogging, but it has also been a month of opportunity – opportunity to share information, provide insight into our disease, and to perhaps help others struggling with the issues discussed here.  I have been asked to continue this blog (okay, only two people have asked… but still…), and I will consider doing so.  I am not certain if daily blogging is something I wish to pursue, but perhaps I could write just a little more frequently than I had considered prior to this inspiring Wego Health Activist Writer’s Month Challenge.  

I leave you with links to a few of my favorite blogs from the past thirty days.  I hope you have enjoyed these writings and have benefitted from them in some small way.  Thanks for reading!

Thursday, April 30, 2015

#HAWMC Challenge Day 30: Unprepared

I don’t enjoy looking back on the beginning of my patient journey with gastroparesis.  Even today, after more than a year has passed, when I think back to the first few weeks of mental anguish and physical agony that followed my initial diagnosis, I get distraught.  You see, I did not understand then what was about to happen to me and how life-altering this condition would be.  I often wish I could have known from the beginning what a horrible and incredible journey I was about to embark upon.  I wish that someone had prepared me for the overwhelming emotional upheaval, physical changes, and social adaptations that would be necessary due to this devastating disease – as if that were somehow possible. 

Since being diagnosed, my life has changed in ways I could not have envisioned, and many of these changes came about quite suddenly.  My illness did not arise gradually and allow for adjustment.  I had no time to prepare for what would be required of me.  One day, out of the blue, I found myself vomiting, in excruciating pain, and on the verge of collapse.  I was hospitalized that same day and put through a battery of tests (including one particularly terrible one where the doctors forced a tube down my nose and pumped my stomach).  Within a week, I was diagnosed, given only a brief explanation of my illness and its treatment, and sent home.  For the next few weeks, I was on a liquids-only diet and was told that I had to gradually work my way up to soft foods and (eventually) solids.  I honestly believed that if I could simply endure those first few weeks of torture, I would then be able to return to my normal life. 

I recall the doctors giving me an overview of gastroparesis.  They told me it was “paralysis of the stomach” and impressed upon me that there was no cure.  I remember them saying that some people would find dietary changes helpful, and if those didn’t work, there were a few medications to try – but they came with risks and negative side effects.  I recall them telling me that some people would opt for surgery to implant a gastric electrical stimulator or resort to feeding tubes when their symptoms were severe.  Mostly, though, I remember them saying that some lucky few would recover almost completely over time and would not experience long-term effects.  Of course, this last statement is what I latched onto and believed would be the case for me.  How could such a thing start so suddenly and not go away just as suddenly?  After all, I was as healthy as I had been in my entire life prior to this episode.  Not a big deal.  I would suffer through the liquids-only phase and move on with my life.

But it didn’t happen that way.  I went home believing I would continue to improve; instead, my condition deteriorated.  Within a couple of days of being released from the hospital, I started vomiting again and could barely keep down liquids.  The attacks of pain worsened, and I became so weak that I honestly could not lift my head up off the couch.  I told my family goodbye.  I truly believed I would die.  I finally mustered up the courage to call my doctor and told him that despite the risks, I thought I should try one of the medications he had mentioned.  He agreed, but because of FDA restrictions and the limited availability of my particular medication, it was two horrendous weeks before I could begin taking it.  These were without a doubt the longest two weeks of my life. 

Since starting the medication, I have stopped vomiting (for the most part) and I can now function well enough to make it through the day, but I still cannot eat without pain.  It is clear to me now that I will likely never again be able to eat “normal” foods in “normal” amounts.  I long for food.  I think about it every second of every day.  I want so badly to sit with my family and enjoy a meal again.  This yearning for sustenance never goes away, and at times, it is almost unbearable. It is likewise clear to me that fatigue, nausea, and pain will probably be a permanent part of my life.  And it is crystal clear to me that this is a life-altering disease from which there is perhaps no coming back.  I have come to realize the horrors of hunger and malnutrition.  I have experienced levels of fatigue that I previously thought impossible, and I have endured unfathomable pain.  I had no idea I would face this.  But that is not all.

Beyond the physical horrors of this disease, the mental and emotional aspects have taken their toll as well.  Before being diagnosed, I was able to go about my days as I pleased.  I could work, complete household tasks, attend social gatherings and family events, take long walks, frequent restaurants, and generally carry out my affairs with little impediment.  I was unprepared for the limitations that would follow my diagnosis and for the isolation that would result from it.  For the most part, I am confined to my home and can hardly ever leave.  I joke that the only time I go out is to a medical appointment – and yet, that is the truth.  I do not travel or “vacation”; I miss my child’s events; and I endure much guilt because I cannot attend even the most important family functions.  I had no idea this would be the case.

I have also been forced to face my own mortality like never before.  I believe my condition is deteriorating.  I believe I am dying, and it is a slow, torturous death – death by starvation.  I am not afraid of dying, but neither do I want to die.  I worry about what will happen to my family when I am gone.  I have a young daughter, and I fear her reaction to my death and the consequences that might result from her growing up without a mother.  I cannot bear thinking about the pain it will cause my husband, and I worry that he might not be able to function when this occurs.  I want to be there when my daughter turns "Sweet Sixteen."  I want to hear about her first kiss.  I want to be there for her when she is sick, scared, or needs advice.  I want to see her grow up, get married, and have children.  I want to know that she has a good career and a loving family.  I want to grow old with my husband.  Facing the strong possibility that none of these things will occur has been incredibly difficult, and it was something for which I was completely unprepared.  The mental anguish is almost indescribable.

When I left the hospital a year ago with what I thought was little more than a stomachache, I had no appreciation of “rare” diseases.  To be honest I am not sure I even understood the concept of “chronic” illness.  I had no idea that most people, and even many doctors, have no or little knowledge of my disease and that there are few sources where one can find in-depth information.  I had never sought help from any sort of support group prior to my diagnosis, and I had no idea these groups even existed online.  I knew about advocacy efforts, but being a political science graduate, these were activities I associated with politics only.  I was ignorant to the monumental difference these concepts, this activity, and this unknown disease would make in my life.

Since my initial diagnosis, I have discovered many different forms of research and sources of information.  I have spoken to doctors, hospital personnel, patient organizations, researchers, and writers in my search for knowledge and answers.  I have become heavily involved with gastroparesis (and other chronic illness) groups online.  I have created and now co-administer a set of advocacy groups that seek to foster awareness and change for my community.  I am active in online chats, meetings, and “venting” sessions.  I am connected in ways I would have never dreamed possible a year ago.

In addition, I have discovered a whole new purpose and meaning in my life.  Over the course of my journey, I have seen unimaginable suffering and need.  I am overcome with compassion and concern for the people I have met, and I am likewise overwhelmed by the kindness and support they have shown me over this past year.  My eyes have been opened to a world that did not previously exist for me.  I have bonded with these souls in ways I never thought possible.  

I understand now what I could not fathom in the hospital so long ago: this is a “forever” illness.  It isn’t going away.  It has changed me, and there is no going back to life as it was before – even if I were to be cured tomorrow.  I was unprepared for this, and I often wish someone had initially impressed upon me the seriousness of my gastroparesis diagnosis.  The truth is, though, that it is unlikely I would have believed them or heeded their warnings and advice.  Something this devastating, this life-altering, cannot be known until experienced, and the unfamiliar path is just part of my harrowing yet uplifting journey.

Wednesday, April 29, 2015

#HAWMC Challenge Day 29: Product Review

The prompt for today is to review a health-related product I find particularly helpful.  Now, I must tell you that I am unable to tolerate most foods, but since eating is what those of us living with gastroparesis struggle with most, I wanted to review a food product.  My options are limited here, but there are still a few items I find both helpful and enjoyable.  One of the best I have found is Kefir.  I am guessing many of you have never heard of this.  I label Kefir as a sort of drinkable yogurt, and I love it not only for its taste, but also for its health benefits and tolerability. 

Though thinner in consistency than yogurt, Kefir tastes similar and has many of the same health benefits.  Like yogurt, it is a good source of probiotics, or the “good” bacteria we need to promote digestive tract health.  Kefir is actually thought to have about three times as many beneficial organisms as yogurt.  It is also a good source of easily digestible proteins, biotin, phosphorous, and calcium (and is even offered in a lactose-free version).

Kefir is widely available in supermarkets in a variety of different brands and formulas.  I happen to prefer Lifeway Low-Fat Kefir, but there are many others from which to choose.  I have tried most of the flavors, and I have enjoyed almost all, but my favorite is the low-fat Raspberry ( 

I have also used Kefir (flavored and unflavored) in cooking.  It works well as a substitute for buttermilk, and can be used in biscuits, breads, pancakes, and other such creations.  Because of the wide variety of flavors available, Kefir is also a great ingredient for smoothies.  You can use it in place of milk or juice.  It adds richness to the drink and makes it quite like a shake.  I cannot eat many of the foods I cook, but my family enjoys them, and I feel good about them making healthy choices. 

If you are able to tolerate thicker liquids and/or soft foods, I highly recommend Kefir.  It is one of the first and only foods I have been able to successfully consume.  I have included links to additional information regarding its nutritional benefits, production, and varieties below.

Kefir Grains

For general information and an overview of the benefits of Kefir see:

For instructions for making Kefir at home see:

For a good discussion of the differences between yogurt and Kefir see:

For Lifeway product information and choices see:

For a variety of Kefir recipes see:

Tuesday, April 28, 2015

#HAWMC Challenge Day 28: HEALTH

The prompt for today is to use “health” as an acronym that represents my health journey.  I am not the most creative or poetic person in the world, but I will give it a shot!

Happy (despite my circumstances)

Engaged (with my gastroparesis/chronic illness community)

Aware (and informed about my disease & its treatments) & Active (on behalf of others)

Learning (about my disease, my limitations, and my strengths)

Talking (to others about my disease, its consequences, & the solutions we need)

Helping (others to cope with their illness and thrive in spite of their limitations)

Monday, April 27, 2015

#HAWMC Challenge Day 27: Understanding

The prompt for today was to write my response to people who do not understand my illness and who are inconsiderate or hurtful because of this.  The problem is that I have not really experienced much of this.  I have a wonderful support system in my family and friends.  I am blessed in that regard.  Those who know me have been most kind to me, and any hurt caused by others has been minimal and unintentional.  This is not the case for many in my groups, though.  They have been hurt countless times, even by those closest to them.  Some have come to believe that they are responsible for the mistreatment they endure.  Many feel guilty because they cannot live up to others’ expectations.  They feel misunderstood, deserted, and isolated.  A lot of them fear speaking up for themselves because they do not wish to cause additional conflict within their family and their set of friends.

This disturbs me greatly.  If I could pass along any message to the people in my groups who are hurting so deeply, it would be to tell them that they are not at fault for their illness and they should not feel guilty for the things in life that are beyond their control.  They are not failures because they have been afflicted with a chronic illness or because other people do not understand the difficulties of living with a devastating disease such as gastroparesis.  They do not deserve to be treated harshly or unkindly, and they have every right to stand up and speak up for themselves.  I wish with all my heart I could give everyone the courage and confidence to do this.  I see so many people who believe themselves to be worthless because of what this illness has done to them.  But they are not worthless; they are of utmost value!  They are valuable simply by virtue of being human.  I want so badly for them to see that they should demand better for themselves.  They should NEVER be ashamed, or embarrassed, or feel guilty because of an illness beyond their control.  My fellow GPers are some of the toughest warriors around, and they must prove it every day.  I want them to feel PROUD of what they are accomplishing and never be ashamed!  So, I say this to my gastroparesis community:

You are surviving this horrendous illness despite all the hardships.  You are fighters!  You struggle with family members and friends who do not understand you; you battle doctors who lack compassion, knowledge, and the will to treat you properly; you wrestle with insurance companies that deny you basic, necessary treatments and procedures; and you combat the media and general public who have no idea what you contend with on a daily basis.  You are sick, and you are doing the best that you can.  You have nothing to feel guilty about.  You do not have to continue to apologize for your illness and the limitations it puts on you.  You are not a lesser human being because you do not live up to some ideal that others have established for you!  Stand up for yourselves!  Educate your family, your friends, your doctor, the media, and the public.  Do not tolerate mistreatment that you do not deserve.  Feel good about yourselves and what you are accomplishing simply by enduring this disease!  You are worthy of love, respect, and understanding.  Demand it!  

I am re-posting an article I previously wrote (below) which I believe fits in well with today’s post.  I wrote it for my groups because I dearly love the people there, and I desire the best for them.  As I have said many times, we need and deserve awareness, understanding, help, better treatments, and a cure.  We have borne enough adversity, and we can no longer afford to suffer in silence and remain invisible.


You are Not a Failure: Speak Up!

It is far too easy for members of the gastroparesis community to believe that we should suffer silently with our disorder. I see this in my support groups every day. They are full of people who feel guilty for not being able to live up to others' expectations of them and who fear that revealing their illness will result in disbelief, disdain, or outright harassment. These are people who try to hide their condition from friends and family; who eat when they are out at social gatherings, even though they know it will cause them intense pain; and who try hard to keep from mentioning their illness in any sort of public way. We seem to believe that we are somehow at fault because we do not have complete control over our illness. We are afraid of offending others and of appearing somehow "lesser" because of our disease. We are afraid of disappointing others and of not living up to some ideal we (or they) have set for us. We are afraid of being mocked or misunderstood. And so we remain silent. But this has to change. This has to change because we are starving to death.

I think about what it was like for me when I first got sick, and what it is still like for me now, to some extent. When I was in the hospital, I was so embarrassed about my condition, about my weakness, that I would not even let my parents come to visit me. I simply could not be seen like that! I was vomiting, frail, in agony, and almost completely helpless. I was fragile. Yet, I refused medications, even pain medications, because I had to prove that I was too strong to resort to such measures. I viewed my illness as a failure. I refused to talk about it with anyone, including my family. I remember telling my husband that he was not to say anything about how sick I was to anybody - too much stigma attached.

I strove to keep up with my "normal" life. I tried to eat with my family and attend social events. I pretended (and told others) that I was "fine" and "doing pretty well." I went about my regular exercise routine, completed most of my usual household chores, and endeavored to preserve my life as it was before my diagnosis. Unfortunately, the result of all of this was a worsening of my condition. It gradually became clear to me that it was no longer possible to live the life I had known prior to gastroparesis. I came to realize that I must let others know things had changed for me.
When I finally decided to go public with my story for the first time, I panicked about this decision. I cried and worried. I was sure all of my friends and family would think I was seeking pity and avoid me because of my revelation. I feared that it might make my friends uncomfortable, or that people would be irritated because I was focusing on my illness. I feared that people would no longer see me as strong or independent. I wondered if they would ever believe me to be a capable human being again. I fretted that they might make fun of me or not believe the severity of my condition.

In the end, I concluded that even if all of that were to happen, it would be better than the alternative. It would be better than being isolated and alone, trying to deal with this disease without any help and without any understanding, cowering at the thought of "going public." It would be better than killing myself trying to sustain a lifestyle that was no longer really physically possible for me to maintain anymore. It would be better than letting the world believe that my starvation is somehow tolerable or acceptable and should be borne without complaint.

I finally realized that I am not a failure just because I cannot control the effects of my disease. My illness is not something I should have to be embarrassed about. It is not my fault that I am sick. It is not my fault if my friends, family, doctors, or anyone else do not believe me or understand what I am going through. I do not need to feel guilty because I cannot attend social events, or clean my house, or eat a meal that someone has prepared that would put me in agony if I were to consume it. I do not need to feel accountable if I miss the family Christmas gathering or my child's recital. I do not need to be embarrassed or feel weak if I want a medication to help with my pain. I don't conceal my disease or its effects from anyone anymore, and when I am asked about it, I tell the truth - all of it.

I should not have to hide my condition from the world - and neither should the rest of my gastroparesis community. We are not weak; we are sick. We should not feel guilty because we lack control over our disease and its consequences. We should not feel weak or somehow at fault for our condition. The truth is that we need help. We are literally "starving" for help, as a matter of fact! We need awareness, understanding, acceptance, better treatments, and a cure. And those won't come unless we speak up and let people know the reality of our situation. This is not a subject hardly worth mentioning; this is survival.

These days, I refuse to apologize to anyone for being ill or for addressing my disease in public. I tell my story for all to see, without hesitation. I speak with anyone who will listen. I write anyone who can help my community, and I provide any sort of personal information they desire. I would stand on the street corners and shout if I believed that had some value. I no longer feel guilty about being ill or about being unable to control the uncontrollable. I refuse to be quiet any longer, and I encourage my GP community to raise their voices as well. Our silence must end if we are ever to become visible. It must end if we truly want help. Speak up and be heard!


My family "went green" for our advocacy group's St. Patrick's Day event.  Here is what they wrote: "Not just wearing our green for St. Patty's Day this year! We love you, Melissa Adams VanHouten, and we're so happy to help spread the word about Gastroparesis (GP)!"  This is the kind of support you all deserve.  Who could ask for more?