ONWARD EVER I GO

Drag myself up,

Pour myself out,

And some days I wonder,

“Is this what it’s about?”

Struggle to find meaning,

Lost in the pain,

Abandoned to this nightmare,

My efforts in vain.

Does He see me?

Does He care?

Do I matter?

Is He aware?

In the midst of the suffering,

Grief beyond compare,

Masses of people,

Hopeless and in despair.

We’re not promised a day,

This I understand,

But I still long for a glimpse

A hint of the Master’s plan.

Good people all around me,

Crying out for better days,

Mustering up their courage,

Doing their best to keep the faith.

But rewards are few and far,

Hardships near and wide,

Explanations beyond my grasp,

And He does not confide.

Don’t mean to be ungrateful,

For much have I been given,

But my mind has many questions,

So, toward answers I am driven.

Don’t blame Him for my fate,

For, indeed, He owes me nothing,

Still I cannot help but wonder,

Why the blessings are not coming.

One touch and I would heal,

One thought, my troubles gone,

One glance in my direction,

My misery withdrawn.

I assume there is a lesson,

Though many I have learned,

What am I still missing?

For enlightenment I yearn.

The foundations He has laid,

So, who am I to question?

Yet ever the notion lingers,

And that is my confession.

Onward ever I go,

Forward where He leads me,

A pathetic worm before Him,

A sinner with but one plea.

That this life of ill and struggle,

Is only but a moment,

Pale shadow of the next world,

One free of lament and torment.

All my hope in my Creator,

That my blind eyes one day will see,

The intricate web he weaves,

His eternal love for me.

DANCE WITH ME HERE

Dance with me here for a time,

Memories fresh in my mind,

Opened the door just a crack,

Caught off guard by what does remind.

Of the life that once came before,

Of the beauty I chose to ignore,

Don’t know what you’ve lost,

Never counted the cost,

Couldn’t know the horrors in store.

Laughter and lightness long-gone,

Days upon end without dawn,

Heartache and longing they grip,

Unspoken words never passed from my lips,

Feeling I’m forgotten, don’t belong.

Stuck in slow-motion and frozen in time,

Reminiscences serve to chastise and bind,

Let them go, ease my grasp, let them flow,

Caught up in sorrow, regret, and turmoil,

Can’t progress nor neither rewind.

Am I condemned to a life of remorse –

Ever-searching, ever-roaming, off course?

Will the reminders remain?

Am I unable to change?

Is there nothing more to look toward?

Of my past, only a remnant remains,

But it ties and it taunts, fills with pain,

Haunted by opportunities missed,

Too numerous are they to all list,

Can I untangle and loosen the chains?

I tell myself all the right phrases,

Offer encouragement, hope, and fresh praises,

But deep down in my heart,

Where I am broken apart,

Wonder if the truth does betray this.

What more can I do to keep the faith –

Ensure my hope and beliefs aren’t misplaced?

Ever-seeking, ever-pleading, never ceasing,

My plight, my daunting path, never easing,

On my knees beseeching, pursuing, begging for mercy and grace.

I’ll trudge forward, much as I always have,

Count my blessings, accept the good and the bad,

But what lesson, what message, have I missed?

Why do I continue to resist and insist?

If this is for gain, for glory, am I not glad?

I cannot help but question the plan,

A mere human, not God above man,

But my fate’s not my own,

A life not mine but on loan,

Lost and helpless, it’s all in Your hands.

You laid the foundations and offered a door,

Who am I to question or demand any more?

Hear my cries, see my plight,

Soothe my soul, dry my eyes,

Fill me up, overflowing, I implore.

Dance with me here for a time,

Memories fresh in my mind,

Opened the door just a crack,

Caught off guard by what does remind.

Gastroparesis Awareness Month August 2019: #RealGP

August is Gastroparesis Awareness Month, and this year, we are launching a #RealGP campaign to help highlight some of the issues in our community.

The #RealGP campaign seeks to dispel common myths surrounding Gastroparesis and illustrate the true physical, mental/emotional, and financial impact of this illness upon patients and their loved ones.

To make this effort a success, we will need your help! Your contributions can take several forms:

• Photos depicting your GP reality
• Statements and memes contrasting common myths (such as all GP patients are thin) with your personal experience
• Stories of struggle with issues most people do not see (making the "invisible," visible, in other words)
• Discussion of the mental/emotional aspects of this illness which are rarely (or poorly) addressed
• Examples of financial hardships -- insurance, medical care, prescription costs, lack of employment, difficulty establishing disability, etc.

The manner and subject of your participation are only limited by your imagination, and this list is not exhaustive.  Please use the hashtag "#RealGP when sharing. Be creative and help us make an impact for our GP community!

Photo courtesy of Ms. Corina Castillo. If you would like a customized #RealGP frame, please comment on our community page post at https://www.facebook.com/GastroparesisFighting4Change/photos/a.1553567304910841/2359457690988461/?type=3&theater.

VIRTUAL ADVOCACY DAY

When: July 23, 2019

Where: Anywhere in the US

Purpose: Support HR 3396

This July 23, 2019, the Gastroparesis community invites you to support the millions of patients and their loved ones affected by Functional Gastrointestinal and Motility Disorders.

These disorders, which include Gastroparesis, Irritable Bowel Syndrome, Dyspepsia, GERD, and numerous other conditions, are frequently debilitating, and sometimes life-threatening, and they impact the physical, mental, emotional, social, and financial well-being of those affected. FGIMDs are chronic illnesses which impact people of all ages, genders, races, and socioeconomic backgrounds; yet there are often few (or no) effective treatments or cures, and the limited available treatment options come with serious side effects and risks. 

Please contact your congressional representatives in the House and request that they cosponsor the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019 (H.R. 3396) and ask your senators to introduce a companion bill. 

This nonpartisan, budget-neutral legislation would promote awareness and expand educational efforts on our behalf and direct much-needed research funds to our communities so that we might finally be granted better, more effective treatments or cures.  You can find the text of the bill at https://www.congress.gov/bill/116th-congress/house-bill/3396.

You may call, write, or e-mail your representatives.  You can find the names and contact information of your representatives at https://www.govtrack.us/congress/members.  Please consider the following talking points when contacting your representatives: 

• Identify yourself as a constituent and be direct about the purpose of your call/letter/e-mail. Ask to speak with the representative’s healthcare advisor if possible. 

• Mention the bill by name and/or number and let your representatives know its purpose.
• Briefly tell your personal story.
• Mention that FGIMDs affect millions of patients and their loved ones.
• Explain that the bill would direct potentially life-saving research funds to these communities in the hopes of finding effective treatments and cures and create “Centers of Excellence” designed to educate and promote awareness of these devastating illnesses.
• Point out that the legislation is budget-neutral (or does not incur additional costs or deficits). 

• Thank your representative for his/her time and consideration and make certain you have left your contact information in case you can provide additional input.

If your representative would like to pursue co-sponsorship, you can direct your representative to contact Mr. Ben Steinhafel, in Rep. James Sensenbrenner’s office, at ben.steinhafel@mail.house.gov and/or Ms. Carol Frauman, in Rep. Gwen Moore’s office, at caroline.frauman@mail.house.gov. 

Thank you so much for lifTing YOUR VOICES!

MARCH ON WASHINGTON, DC - VENUE CHANGE!

We have made the difficult decision to move the rally to an indoor venue (details below). We had to make that decision today in order to have adequate time to notify our vendors, our speakers, the Capitol Police, and our participants and to secure the new location. We are fortunate to have found an indoor venue, as adequate and appropriate spaces are quite difficult to snag at this late date and are very pricey.

We have been watching the weather forecast and speaking to our DC vendors, and even though we cannot be certain there will be thunderstorms (and this can change in an instant, of course), we feel there is considerable risk of bad weather. In the case of rain or storms, we would have to cancel the rally entirely as our vendors would not be able to deliver some of our equipment and we would be putting attendees at unreasonable risk. And, honestly, there comes a point at which attendance drops, foot traffic would be scarce, and attendees would simply be so miserable that the benefit of remaining outdoors would be small.

Unfortunately, the one thing we absolutely cannot control is the weather, try as we might. My apologies that we cannot pull off this event as initially intended. But please rest assured that we will do our best to still make this a memorable and significant event. This changes nothing in regard to our meetings with our legislators, the IFFGD conference, or the rest of the event schedule, and we are hoping for the strongest impact possible.

The indoor location does offer some advantages. Conditions are more comfortable for participants, as it is dry, spacious, air-conditioned, and offers on-site restrooms, chairs, tables, and beverage sales. We also have access to several screens on which we will loop a video of photos provided by our community. We believe this venue offers much and that we will still have a strong impact.

We will be sending out an e-mail to all registrants notifying them of the change, but we need your help in getting out the message.

Here is the NEW VENUE LINK: https://ivycitysmokehouse.com/. We will be in the concert section and will also have access to an outdoor patio should the weather clear.

THANK YOU ALL FOR YOUR PATIENCE AND UNDERSTANDING! SEE YOU IN DC!

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. 

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.

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

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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