Monday, March 18, 2019

GASTROPARESIS MARCH ON WASHINGTON


The Gastroparesis community will host an awareness rally on June 24, 2019, from 2:30-5:30 PM ET at Union Square (behind the Capitol Reflecting Pond) on the Capitol Grounds of Washington, DC.  Please join us as we shed light on our illness and promote better understanding and proper care.

The National Institutes of Health (NIH) estimates 5 million or more people live with gastroparesis, but, despite the numbers, gastroparesis is considered an “orphan” disease due to the lack of resources, support, and attention it garners.  Gastroparesis is little-known to the public and often misunderstood by healthcare professionals, researchers, legislators, and others who impact our care.  And, so, it is imperative that we, as a community, lift our voices in a united front to raise awareness and bring about much-needed change.

Gastroparesis, or “paralysis of the stomach,” is a gastrointestinal motility disorder in which the stomach muscles fail to contract and move food through from the stomach to the intestines at the proper rate.  It is a slowing of the stomach-emptying process marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety, extreme weight fluctuations, bloating, and stomach/abdominal pain, and it often results in debilitating and sometimes life-threatening complications such as malnourishment, dehydration, esophageal damage, erratic blood sugars, and digestive tract blockages. 

The most common known cause of this condition is diabetes, which accounts for about one-third of the cases.  Other known causes of gastroparesis include neurologic disorders such as Multiple Sclerosis and Parkinson’s Disease, connective tissue disorders, complications resulting from surgeries, various medications (such as some narcotics and antidepressants), and direct damage to the Vagus nerve.  Most cases of gastroparesis, however, are labeled “idiopathic,” meaning there is no known cause. 

Currently, there is no consistently safe, reliable, and effective treatment for gastroparesis – and there is no cure.   Available treatment options include often ineffective surgeries; medications which carry the risk of serious side effects; feeding tubes or total parenteral nutrition (TPN); and dietary changes (liquids or soft foods), which often do not provide relief. 

For additional information regarding gastroparesis, please contact the International Foundation for Functional Gastrointestinal Disorders (IFFGD) at www.iffgd.org or the Association of Gastrointestinal Motility Disorders (AGMD) at www.agmd-gimotility.org.

Register at https://bit.ly/2SXhaSs.  For additional details and inquiries regarding the “Gastroparesis March on Washington” rally, please contact Melissa Adams VanHouten at gpmarchondc@gmail.com. 



Friday, March 15, 2019

SHADOWLAND

We are not among the living,
But we are neither among the dead,
Hovering somewhere in-between,
Where all souls fear to tread.

Blinded by the sparkling light,
They are oblivious to our pain,
They have banished us to the shadows,
And it is here we must now remain.

We reach out toward the warmth,
Of our long-abandoned lives,
But our ice-cold touch is rebuffed,
And sweet mercy is denied.

We can no longer feel the sun,
Though its light lingers just behind,
We can no longer grasp the morning,
So, to the darkness, we are resigned.

Relegated to this bleak blackness,
This punishment for what crime?
Exiled to this barren wasteland,
Sentenced without reason or rhyme.

Oh, to be among the Others!
To again taste life’s tender embrace,
To openly dance in the sunlight,
To feel it shine upon our face!

To turn our downward glance upward,
To bask in the glorious glow,
To spin in the radiant rays,
To relish it long and slow.

Mere memories long-remembered,
Shades of what might have been,
Bitter, punishing reminders,
Of that which was taken by the wind.

Set apart from what once mattered,
We are on the outside looking in,
Outcasts, outsiders, pariahs,
Ever-longing to begin life again.

When we think we have our fate mastered,
The ever-looming clouds appear once more,
Announcing their ominous presence,
And their wretchedness down again pours.

Weary of feeling worthless and hollow,
Of longing for what is long gone,
No matter how vehemently we deny it,
To our past lives, we are roused and are drawn.

We cry out in torment to the Others,
“Please, hearken and bend to our pleas!”
But we are met with indifference and silence,
Our sorrows but words in their breeze.

For while worshipping in their sunlight,
They have neglected to glance our way,
We are silhouettes too dim to matter,
As they dance through their merry days.

We brush up against their coattails,
Meager whispers in their deaf ears,
They have forgotten the sounds of us,
Mere specters who now fill them with fear.

We are ghosts which serve to haunt them,
Flickering phantoms, ethereal and pale,
Forgotten, ignored, tossed aside,
We are hidden behind the veil.

For if they acknowledged our presence,
Peered into the shadows and gazed,
Perhaps they’d see regrets and transgressions,
Or be forced to face the forms they might take.

Yet, we cannot wholly blame the Others,
For their world was once likely our own,
We, too, looked away from the darkness,
Neglected the unfortunate forgotten souls.

But now that we are at once among them,
How we long to feel the light of day,
To awaken from this endless cruel nightmare,
Is this a dream which is too far away?

Are we forever by the chasm separated?
Are we indeed past the point of no return?
Are the matters which divide and conquer,
So vast we cannot breach them, cannot learn?

Our hope, our glimmer, and our passion:
From their stupor, they’ll someday awake,
And with no second thoughts or backward glances,
They will rescue us from our dark fate.

Save us from this desert, this Shadowland,
Where we are something just shy of whole,
Envelop us with their gentleness and grace,
Bring light to our anguished, daunted souls.


Thursday, February 21, 2019

COLLABORATION

Too many in the outside world see my online community as "just" a Facebook group. That must change. Too many providers and other care-related bodies have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions there. They miss the benefits -- to both us and them.

Our #Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. They are not stops for "bashing" physicians, although that does occur. They are not hosts of misinformation, although we do combat that. And they are not "negative," pits of despair, although we see many who lack hope.

Facebook groups offer far more. They are sources of physical, emotional, mental, social, and spiritual support. They are the center of information-sharing and advocacy efforts. They are our best attempt at getting out accurate information regarding the causes, effects, and available treatments and resources for our illness. They are a one-stop shop where we treat the person as a whole and not simply as a diagnosis. They are self-help and education communities. They are the light at the end of a sometimes very dark tunnel and a source of encouragement and hope for those who the medical system and families and friends have failed. They are "home" to both many who are isolated and lacking basic knowledge and support and to those who wish to offer such knowledge and support.

And, so, I encourage healthcare professionals, researchers, legislators, the media, pharmaceuticals, insurance companies, loved ones, and the general public to lose your preconceived notions and open your eyes to the possibilities for collaboration. We are not your enemy and we need your help.

There are currently 23,500 members in our largest Gastroparesis support group, all longing for answers and beseeching you for assistance, and I am guessing we closely reflect and represent many of the estimated 5 million GP patients outside social media. Hear our cries and begin partnering with us to develop solutions to our common problems and start meeting our unmet needs! We seek partnerships in our quest to thrive, despite the cruel nature of this illness.

My goal from the very beginning has been two-fold: to tell our stories and expose the problems we face and to find solutions to those problems. I do not post and plead simply to complain. So, if you can assist us, please contact me via private message here on Facebook or via email at gpfightingforchange@gmail.com and I will be glad to discuss the possibilities. There are many opportunities for your further involvement in our community. If you are a physician, researcher, legislator, or other interested party, we welcome your presence in this community, and we long for open and honest (but kind) conversations and collaboration. I am convinced that, working together, there is no problem we cannot resolve.

#CureGP


Tuesday, January 15, 2019

Self-Respect

Who cares what other people think? Well, probably you. It would take a pretty cold soul to completely ignore the opinions of others, especially family and other loved ones, and pretend that words never harm. Hateful words sometimes leave deep wounds and scars.  This is an especially common issue in the Gastroparesis community, as those close to us, who should be our biggest source of support, sometimes question our diagnosis and symptoms and often refuse to accept our quality of life and treatment choices.

But it is possible to overcome the pain caused by the thoughtless remarks and actions of others and heal. You can set aside the judgment of those who presume to know what is best for you, allay your own guilt and shame, and recognize that no other person, no matter how intimately connected, can feel exactly what you feel or truly understand what you endure. You are unique -- and no other living human shares your exact same thoughts, emotions, and experiences.

You do not need the permission or approval of others to live your life, and you can choose not to be manipulated or limited by those who seek to direct your path. You have complete control over how you respond to hurtful remarks and actions, and, though the harsh opinions of loved ones might sting, you can be certain they cannot bind you. 

This is YOUR life, and you only get one. Make it count.




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Monday, December 3, 2018

ARE YOU LISTENING?



A new study indicates that about 40-60% of patients do not fully disclose and/or lie about health information when seeing their physicians.

Now, there are a number of reasons cited in the study (article links below) as to why patients behave as they do and how physicians might help the situation, but, quite frankly, I find it laughable. It really is not that complicated. I offer the following stories as illustrations of why patients might be unwilling to be "upfront" with information and/or hesitant to have open discussions with their health care providers...

* A while back, a member of our Gastroparesis support group posted that when she told her doctor she had eaten a food which was "off-limits" for Gastroparesis patients, the doctor yelled at her, focused solely on this one event (which was not her typical behavior and, in fact, a rare occurrence), and refused to address any other issues or possibilities which may have caused the latest setback in her health.

* Another group member's physician rejected her report of the number of calories and types of food she was consuming because she was overweight and not losing. He openly accused her of lying, informed her she could "stand to lose a little weight," and refused to consider additional medications or procedures.

* A friend mentioned on a patient form that she had taken opioids -- for a brief time, several years ago -- and the doctor refused to acknowledge the brevity of her use or length of time which had passed and attributed her slow motility to "drug use" rather than exploring other, more reasonable explanations.

* When I described my pain to my motility specialist, he informed me, "There is no pain with Gastroparesis," and then argued with me about the nature and location of my pain. He continually downplayed my concerns, refused to consider the possibility that he could be mistaken, and blithely dismissed symptoms I wished to emphasize/prioritize because he felt other symptoms were more significant to my quality of life.

* When one group member politely questioned her care and eventually complained (through the proper channels and according to established procedures), her physician promptly dismissed her from his care. She was later "blackballed" from the entire medical group -- ALL providers in that particular health system and not simply GIs.

This is but a brief sampling of events which readily come to mind. I can produce thousands of similar stories -- and far worse. Daily, my group members post that they would rather suffer and even die before returning to their physician (or the ER). They speak of weeping in their GI's office because the good doctor refused to listen or express concern about their worsening condition. They speak of being scolded for minor transgressions, of doctors who refuse to believe they are struggling, who outright accuse them of inventing or exaggerating symptoms, who label them as hypochondriacs or drug seekers. They are frequently told, "There is nothing more we can do." They are "taught" in every possible way that they will not be taken seriously and to abandon hope of effective treatments or cures. Why bother, then, to have further discussions?

Patients are routinely questioned, misunderstood, patronized, dismissed, shamed, mocked, scolded, or in some other way belittled. Many are afraid to speak up lest they are blackballed or unjustly punished. They downplay or overstate, hide, or even lie about symptoms in the hopes they will finally be taken seriously and receive genuine help.

Good Doctors and Esteemed Researchers, this is not rocket science. Approach patients with an open mind, a willing heart, a listening ear, and helping hands. Assume they genuinely experience the symptoms they relay to you and that they truly wish to be healed. Stop pretending there is a great mystery to it all and lose the tired excuses. Treat your patients with respect, dignity, and compassion, and, only then, will they feel comfortable engaging in open communication!

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Sunday, December 2, 2018

BUT A WHISPER

Ignore her and perhaps she will cease to exist,
Out of sight, out of mind, nevermore,
Though she dearly wishes, it does not work like this,
Ever present, ever looming, evermore.

Oh, to be a wisp, a whisper,
Or a whistle which fades in the wind,
An echo which dies in silence,
Not condemned to days without end.

A passing thought or fleeting glimpse,
Nonexistent for merely a day,
Wishing it were so and knowing it is not,
Never ceasing yet withering away.

Sweet peace eludes, escapes embrace,
An enigma which does consume,
An illusion, pure fantasy, mere dream,
More a longing than a thought in full bloom.

Though her ambition, her intention, her desire,
Unreachable it forever remains,
Her smile hides tears which linger and flow,
And her sanity she continues to feign.

Looks away, hides her eyes, masquerades,
As her glance she expertly diverts,
Flees the pain, the darkness, the torment,
Seeks serenity her gaze does subvert.

Cannot will it away or pretend not to notice,
Her frailties on glorious display,
Not a shadow nor specter from days long past,
As her pale gaunt image at once betrays.

No matter her efforts, her pleas,
Subtle whispers of a soul forlorn,
The face in the mirror remains,
Ever present, ever looming, evermore.


Wednesday, October 17, 2018

The Fall

STRENGTH IS FOUND IN STRUGGLE

If you have never met adversity and no troubles have crossed your path...

If you have never fallen, never scraped and clawed, never fought desperately to scale the slippery walls of the black pit of despair...

If you have never rued your frailties and inadequacies or railed against the injustices which keep you mired in the muck, stuck in your sorrow...

Then you have also never known the exhilaration of the climb, of survival, of defying the odds. You have never felt the power which throbs within, never loosed the beast which longs to roar.


PERSEVERANCE AND DETERMINATION ARE FOUND IN FAILURE

If you have never met obstacles or confronted hurdles...

If you have never watched helplessly as hope slowly crumbles and slides through your fingertips, never desperately gripped the receding ground, the quicksand which surrounds, as you cling tightly to your sanity...

If you have never felt the bitter loss of the fall or known the pain of beginning again, time and time again, never sure of the ascent...

If you have never felt the sting of defeat, the gut-wrenching agony of the loss...

Then you have also never known the sweet bliss, the gentle kiss, of victory.


MOTIVATION AND WILLPOWER RESULT FROM WANT

If you have never known hunger or deprivation...

If you have never gazed up from the murky bottom of the endless abyss of self-loathing to the towering heights of pride, never felt the longing to reach the light, ever so dim...

If you have never glanced in the mirror of your failures and shortcomings, never cried out in horror at the image before your eyes... 

If you have never yearned for your release, never regretted your crimes, never acknowledged your lows...

Then you have also never known passion or desire, never lusted for pure freedom, never craved nor tasted the satisfaction of accomplishment.


STAND TALL. OVERCOME. THERE IS NO SHAME IN THE FALL.