REAL, BUT NOT QUITE

On the outside, looking in

Before the mirror, wearing thin

Bound and broken beneath my skin

Barely human, but I pretend

 

Behind the veil that hides my pain

Masks my emotions till I appear sane

Beyond their notice, without a trace

Bending and blending, I find my place

 

But in these shadows, I’m one step behind

Off to the side, just outside the lines

Imprisoned in darkness, confined to the night

Apart from the daylight, losing my mind

 

Trapped in the wasteland, arid and bare

Thirsty for hope in this desert of despair

Haunted by memories of the woman once there

Now a pale, lifeless copy who fails to compare

 

Residing in a world that’s real, but not quite

Ever in the background – here, but out of sight

Grasping and clawing, never reaching the prize

Longing to soar – finding ground, but never flight

DOMPERIDONE: AN APPEAL FOR COMPASSION

On December 11, 2024, the FDA announced the cessation of the Expanded Access Program for Domperidone. In the wake of this decision, I would like to share a few comments from community members (who shall remain anonymous) about the impact of this decision on their health.

From my own experience, I can tell you that this medication was truly life-saving. I would not be here today without it. After diagnosis, I was so weak I could not lift my head off my pillow, could not manage even sips of liquid, and believed with all my heart I would die. All of that changed within days of starting Domperidone.

Make no mistake, there are no good alternatives for Gastroparesis patients who have likely already tried and been failed by other medications and treatments and who have relied on Domperidone to keep them alive and functioning. In many cases, Domperidone is a drug of last resort. This program is the difference between survival and starvation for many people in this community; needless suffering and deaths will result from this program's end.

***********************************************************************

COMMUNITY REACTIONS, CONCERNS, AND EXPERIENCES

~ This was the only medication that worked to make my symptoms manageable. I am so upset! I'm only 23, was diagnosed at 21. Just feeling hopeless. I don't want to go back to the severe symptoms I had before having access to this medication.

~ I’ve been on it for 10 years, and without it, I can’t eat at all. It’s so scary, and we are helpless. Other countries make it, but it’s illegal for us to get it that way. I pray this changes

~ It was a game-changer for me. I’ve been on it for a few years, and I was in really bad shape before going on it. I am kind of freaking out.

~ Dreading the day. It helped me so much that I didn't need my feeding tube anymore.

~ They just don't care. The benefits of taking it far outweigh the cons. What about all of us who are living a better life with it? Don't we have a right to try?

~ Thanks to Domperidone, I am able to keep down small amounts of food and liquid. I implore you to seek legal avenues for patients like myself to continue accessing domperidone - whether through a new designated pharmacy, compounding pharmacies, or even ordering it from other countries.

~ I had the G-POEM in June, and they weaned me off Domperidone. That lasted a whole week before they put me back on it - worst week of my life! It was like I went back to square one, but worse! I cannot go without Domperidone or my life will change drastically! I won't have a life at all. Please, It's just awful without it!

~ This has been the only medication that has helped. I was told prior to starting it that if it failed, they would have to resort to surgical options. I truly hope this is figured out so those of us who have benefited don't have our treatments interrupted.

~ I cannot believe this! That’s like flat-out saying, “We, the FDA, do not care about Gastroparesis patients.”

~ Oh my God, I cannot go without Domperidone.

~ Omg, this is not good. It’s the only thing I can take that works.

~ Praying this doesn’t happen.

~ My 47-year-old disabled daughter, who has had very negative reactions to alternative medications, has taken Domperidone for 24 years. I just want her to live.

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POSSIBLE ALTERNATIVE TREATMENTS

Reglan/Gimoti is the only FDA-approved prokinetic for Gastroparesis. The following links provide additional information and perhaps a few treatments to be considered:

https://my.clevelandclinic.org/health/articles/prokinetic-agents

https://pmc.ncbi.nlm.nih.gov/articles/PMC8421525/

*********************************************************************

We urge the FDA to find alternative sources, and short of that, we seek congressional intervention. The FDA and all of our policymakers must recognize the deeply negative impact the cessation of the Expanded Access Program for Domperidone will have on the gastroparesis community.

Crisis: Cessation of the FDA Expanded Access Program for Domperidone

On December 11, 2024, the FDA announced the following on its domperidone page: 

“Update: FDA was informed in late 2022 that the current supplier of domperidone was exiting the business due to transfer of ownership of the product to another company and, as such, will no longer supply domperidone tablets for treatment use under expanded access.  Efforts made in the interim to identify an alternative source have been unsuccessful. The current supply will be exhausted as early as the first or second quarter of 2025, at which time this program will no longer be able to supply domperidone for treatment use under your expanded access IND. FDA understands that this may pose challenges as you continue to care for your patient(s). We are making you aware of this development now so that you may begin to explore other treatment strategies.”

As a gastroparesis patient and advocate who has used and benefitted from the effects of domperidone for many years and has witnessed the advantages of this medication in the numerous online support groups I manage, this is alarming news.  I seek clarification and answers for my community.  

I initially contacted the FDA on December 13, 2024, to try to gain a better understanding of the situation and was denied additional information.  FDA staff, though congenial, would not specify whether the “supplier” in question was Dougherty’s Pharmacy (the only legal distributor of domperidone in the U.S. or Janssen, the manufacturer) and would not provide information as to the steps they had taken to “identify” an “alternative source.”  FDA staff indicated that the statement on the website would be the only information released to the public.  I expressed my deep concerns about the impact this would have on the gastroparesis community – as domperidone is a life-saving medication for some community members – and the narrow dissemination of the notice, as patients rarely, if ever, visit the FDA domperidone page. The FDA representative directed me to “spread the word” and consider contacting my congressional representatives (which I will gladly do). 

Upon the denial of additional details from the FDA, I contacted Dougherty’s Pharmacy directly and was informed by the pharmacy manager that they were unaware of the cessation of the FDA Expanded Access Program for domperidone.  The manager consulted the FDA website for confirmation while I was speaking with him and seemed stunned by the notice.  He instructed that he would speak with his contact at the FDA and call me back with any new information he was at liberty to share.  He contacted me the following day, after speaking with the FDA, and told me that the program seemed to be ending but he did not know the details.  He further stated that Dougherty’s was willing to continue to supply domperidone and would even compound the medication if permitted by the FDA because of domperidone’s life-saving importance to gastroparesis patients. 

After speaking with the pharmacy manager the second time, I contacted the medical science department at Janssen and spoke with a representative who, though not familiar with Motilium/domperidone, researched the product status in the system and noted that the current status of domperidone had not changed; the system indicated that Janssen was still manufacturing and providing domperidone to the FDA Expanded Access Program and there was no indication in the system that this would cease. 

Since the answers I received from Dougherty’s and Janssen did not make sense in the light of the FDA notice, I contacted the FDA again on January 7, 2025.  Again, I was denied details and was told that the program would end.  The Patient Affairs representative I spoke with wished to be helpful but did not have adequate information to supply.  She offered to research the issue and contact me once she had done so.  She contacted me the following day but could tell me no more than the update on the FDA site was the correct and only information that the public would currently be supplied.  She further encouraged me to detail the issues in a follow-up message to the FDA. 

I seek answers to the following questions:

 · Who is the “supplier” mentioned in the FDA update?  Is this Dougherty’s, Janssen, or a third party of which I am unaware?

· If Dougherty’s or Janssen is the “supplier” mentioned, why was neither party aware of the cessation of the program?

· Since the FDA has known about the supply issues since 2022, why is the gastroparesis community only now, more than 2 years later, being informed of the crisis?  Does the FDA consider this adequate notice for doctors and patients who will struggle to identify new treatment strategies?  What additional steps have been/will be taken to inform doctors and patients of the program cessation?

· What steps have been taken since 2022 to identify an alternate supplier?  Who has already been contacted and who is on the list of future contacts?  Why are there no other alternatives for obtaining domperidone if another supplier cannot be identified?

· What “other treatment strategies” does the FDA deem available to the gastroparesis community since only one medication (Reglan/Gimoti) has been approved by the FDA for use in gastroparesis patients (and that medication comes with a black box warning)?  (It should be noted as well that most patients prescribed domperidone have already tried and been failed by Metoclopramide.) 

The FDA must recognize the deeply negative impact the cessation of the Expanded Access Program for domperidone will have on the gastroparesis community.  Make no mistake, this program is the difference between survival and starvation for many people in this community; needless suffering and deaths will result.  I seek information and solutions on behalf of my community members and will not rest until I have them.  

LEARNING TO COPE

It is the helplessness that stings,
Feeling you can’t change a thing,

Watching your friends suffer and die,
While doctors and researchers stand idly by.

“It’ll get better…” but sometimes it won’t;
Often, we must simply learn how to cope.

Cope?  That’s a ruse, a trick, a cruel joke,
A deception, a distraction, an ill-conceived hoax.

The best we can do is survive another day,
Keep the darkness in check and death at bay.

They have no real answers, and so they proclaim,
“It’s all in their heads.  The patient’s to blame!”

They turn a blind eye to our struggle and pain,
Our protests ignored, our petitions made in vain.

They won’t lift a finger – perhaps they don’t care –
That our symptoms become harder and harder to bear.

No swift interventions, for we are “too complex.”
Best to pass us along, though we strongly object.

Above their pay grade; we must find someone else,
But our options are few and good ones far less.

Where are we to go and what are we to do,
When the “best in the business” haven’t a clue?

We languish and decline, left to ourselves,
Inadequate treatment – why is there no help?

We are here, and you see us; we’re aware that you do,
So, why turn your backs, when you know what we go through?

It is easy to get bitter and want to give up the fight,
When no one acknowledges or cares about our plight.

We are tired and discouraged, in need of relief,
Ill-equipped to lead the battle, worn down and weak.

Want to throw up our hands, but we can’t take a knee,
Can’t shield our hearts from the anguish we see,

Our people are in bondage, locked in a cell,
No solutions, little hope, lost and unwell.

We cannot falter or stay silent and meek,
Must press ever onward for the changes we seek.

So, we’ll steel our bodies, wasted and frail,
For the uphill battle and the rocky trails,

Spent and lacking, but determined to persist,
We’ll raise our voices and shake our fists.

That my friends, is learning to cope,
When your world burns around you and you hang onto your rope.

Though dismissed and abandoned, we are fierce and defiant,  
And they will never break us or extinguish our fire.

FROM THE OUTSIDE LOOKING IN

To you on the outside looking in,
Whose baseless judgment knows no end,
Who pretend to know enough to comprehend
Our pain and suffering, the depths to which we’ve been,
 
You who shake your heads at our great disgrace,
You with lashing tongues that diminish and abase,
From your lofty, healthy, pristine place,
Spout venom dressed up in trite cliches.
 
“A thing to behold, a blessing in disguise,”
So preach the saintly, the philosophers, and the wise,
As if our cruel illness could have an upside,
As if we’ve been granted some “soul-perfecting” prize.
 
You wield your “positivity” as if it’s a club,
“Chin up! Don’t you know you must overcome?”
No compassion, no mercy, no warmth, and no love,
Bludgeon my poor spirit till it grows cold and numb.
 
But when you’re the one who is trapped deep inside,
Inhabiting the world of the forgotten and cast aside,
Where from your brutal fate there is nowhere to hide,
Where your agony and misery cannot be denied,
 
The view appears somewhat different to you,
Murkier, muddier, and harder to see through,
Not the land of the living the others cling to,
The luscious world of wonder that you once knew.
 
We reach for a hand that might lift us up,
For an extended invitation to the joyous world above,
But rather than sweet grace, you offer only rebuff,
No matter our efforts, we are never good enough.
 
Ms. Sunshine, Mr. Righteous, I implore you to see
That your patronizing speeches and harsh enquiries
Serve only to punish, belittle, and demean;
They do nothing to cheer, inspire, or set free.
 
For we live in darkness, and every day is a chore,
Our spirits are dampened, and our bodies are at war.
We can’t readily accomplish what we were able to before,
Takes more time and great effort to replenish and restore.
 
What you see as simple and command that we do,
Is much harder for us, though we try to push through.
We are weak and depleted, gone the strength we once knew,
And every day as we waken, we start the battle anew,
 
We fight to move forward through tribulations and trials,
As survival consumes us and our lives pass us by,
We search to find meaning, know our lives are worthwhile,
It’s not as easy as it sounds to greet this all with a smile.
 
We daily face hardships you will never understand,
And must live within the limits our illnesses demand,
So, your calls to “greatness” and “helpful” reprimands,
Mean little, as we’re already doing the best that we can.
 
If you truly wish to help us, then bend down on your knees,
Pray for our healing, our comfort, our relief,
Acknowledge our struggles and offer blessings and peace,
Live among us, walk beside us, see our hearts, share our grief.
 
The barrier between us that wounds and divides,
Must fall away, and you must come inside.
Come down from the mountain, set your judgments aside,
Lovingly embrace us and try to see us through our eyes.
 
Your wagging tongues you must silence and control,
For you are called to comfort and not just to scold.
Inside, we need understanding and warm hands to hold,
Gentle spirits that nurture, loving arms that enfold.

"Coping" with the Pain

This morning, I was thinking about (and fuming over) an article I read a few years ago in which a physician commented that we are a society lacking coping skills, a people seeking "quick fixes" for our pain, one that needs to acknowledge that "suffering is part of life." He was lamenting the fact that patients came to him seeking pain-relieving medications (opioids, to be precise). His tone was mocking, condescending, and completely void of empathy or compassion, and I immediately thought to myself, "I wonder how he would feel if he lived with Gastroparesis for a spell?"

Now, I would wish this illness on no one, of course, but I am guessing the good doctor has never experienced the sort of chronic pain that I and so many in our Gastroparesis community daily endure. Perhaps I should grace him with the details...

My pain is overwhelming, send-me-to-my-knees, curl-up-in-a-ball, beg-for-mercy suffering for which no level of coping skills can prepare one. It is daily, ever-present, a physical and mental torture that confines me to my home, tethers me to a heating pad, stains my cheeks with tears, and transforms me into a raging, agonized beast who would give almost anything to rid herself of it.

It impedes sleep, and when (if) rest finally comes, it awakens me again in the nighttime. It haunts and taunts me with the knowledge that no matter how well I battled it today, it will be back again the next morning for another round -- perhaps stronger than the day before. Mentally, emotionally, and physically, it alters my being, changes who I am, and wears on me until I believe I can bear no more. And, yet, I must. I have no choice. It comes. I cannot will it away, wish it away, or pray it away. At best, I can lessen it to the point where I can function in some minimal fashion, but it will not be ignored nor placed on a back-burner. And it does not end. Ever.

So I take issue, O Wise Healer, with your suggestion that I have no coping skills and seek, instead, a "quick fix" to all of life's problems. Suffering is, indeed, a part of life, but I would wager that my suffering and that of many in my GP and chronic pain communities is nothing akin to what you have experienced. And after more than nine years of this torturous life, I am well aware there is no simple solution, no easy, consequence-free choice. But would a moment of relief, one serene, carefree, beautiful, blissful moment free from this pain be too much to ask, to expect? You hold the power to provide that, and yet you chastise us for desiring it.

I should probably clarify that I do not now, nor have I ever, used opioids. That's right, I have chosen to endure the "discomfort," as the article's author so blithely labels my suffering. But I do not make this choice lightly, and there are many days I yearn to take a different path. Many in my community do take that road. They turn to opioids (or other pain medications) because, without them, there simply is no quality of life. They cannot function in the most basic ways. They desire some small measure of comfort in a world of chronic illness where there is little.

Good Doctor, you think yourself so wise and strong because you have been blessed with a nearly pain-free, healthy existence. But take a moment to consider the "lessers" before you pass your profound judgment upon us, and, perhaps, view us from an alternate perspective -- one of compassion and empathy, free from judgment and assumptions about our motives and our abilities to "cope." We know a struggle few will ever experience.

Should we not have a voice in our care, in the path we walk? Patients are disregarded, ignored, imprisoned by pain, devoid of options... and this is unforgivable.

No, Good Doctor, I do not need any further instruction on how to endure pain. I am a trooper, a master of "overcoming," who is quite capable of "coping with" and "managing" pain; I am simply tired of having to do it! I want relief, an end to this madness. I want a cure.

Why is that so difficult to understand?

NORMAL

What is normal?
Yours or mine?
Crossed the boundary,
Never saw the warning sign.

To a world of madness,
That fluid fine line,
Now etched in permanence,
No exit to find.

Seizes your indulgences,
And all you hold dear,
From dawn into night,
Fraught with anger and fear.

Dreams and ambitions?
You won’t find them here.
Just crushing, dull numbness,
Behind the decorative veneer.

“New normal” they declare,
As if that’s something to behold,
But the memories, the good times…
I prefer the old.

They have no real answers,
But might keep you alive,
You might languish and struggle,
But don’t expect to thrive.

They have Band-Aids and tubes,
A whole chest of survive,
But the full life, the whole,
Cannot be revived.

Reduced to a photo,
A face on a screen,
Neither dead nor living,
But somewhere in between.

Well, that just won’t cut it,
This side of the line,
No thank you to compromise,
I want back my life!

Preconceived Notions Surrounding Social Media Groups

Far too many people have preconceived notions and a basic misunderstanding of the nature of Facebook groups and of our interactions within them. In short, our groups too often get a "bad rap" that is neither deserved nor true.

Our Gastroparesis support and advocacy groups are not simply places where we "vent," although we do vent. Many of our members have no other place to do so, as their families and friends dismiss and refuse to believe their struggle. The groups, then, are the one place where members feel understood and accepted. And far from being mere "gripe sessions," such posts might better be viewed as self-care and self-help, as they attempt to put into words the feelings that weigh heavy on the hearts of our members, who seek acknowledgment, compassion, and, sometimes, advice for moving forward.

The groups are not merely boards for "bashing" physicians, either, although that does occur. It can be difficult to find doctors who are both knowledgeable of the life-altering effects of GP and who care about the overall well-being of their patients. In addition, sharing bad experiences often generates discussions about how to better communicate with physicians and how to advocate for assistance, affords members the opportunity to suggest possible remedies to obstacles and problematic interactions, and flashes a warning sign about healthcare providers who consistently under-serve their patients.

Further, the groups are not hosts of misinformation, although we do combat that. By permitting members to ask questions, wonder aloud, and speak freely (or, at least, as freely as Facebook permits), we offer rational explanations, discuss research and information from credible sources, and share personal experiences and perspectives. We offer and flesh out what is accurate and inaccurate, what is helpful and harmful, and what is perhaps worth pursuing or dismissing.

And, finally, the groups are not "negative" pits of despair, although we see many who have been dismissed, mistreated, beaten down, and lack hope. We combat this by offering listening ears, helping hands, and understanding hearts. We would rather our members be outspoken about their worries, fears, and sense of hopelessness than hide their pain and suffer in silence. If we do not know, then we cannot help. We hear the cries that others have ignored and give voice to the pain so that "healing" can begin. But we also share uplifting stories, small and large "successes," and moments of overcoming. We hear of weddings, births, graduations, successful treatments, good days, and reconnections with families and friends. We express both despair and hope, as is the case with nearly all humans. We laugh, cry, commiserate, pray, and wish well.

In short, our groups 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 those who are isolated and lack basic knowledge and support and to those who wish to offer such knowledge and support.

And, so, I challenge and encourage healthcare professionals, researchers, legislators, the media, pharmaceutical and insurance companies, loved ones, and the general public to lose their preconceived notions and open their eyes to the benefits of social media-based support communities. We are so much more than you have imagined.

GASTROPARESIS AWARENESS MONTH 2022

Every year, Gastroparesis: Fighting for Change supports Gastroparesis awareness by engaging in a themed campaign designed to highlight the issues, needs, and goals of our community. This year’s theme is #GPWontSilenceMe.

As part of this effort, I would like to collect photos, quotes, experiences, and/or stories demonstrating what you would like doctors, researchers, legislators, policymakers, the media, and family/friends to know about living with GP and/or discussing the changes we, as a community, need to see.

This is your chance to speak! The goal is to help the outside world understand that this is more than a tummy ache. They need to see the true effects of GP on your life — physical, mental, social, financial, and spiritual — and they need to know what measures and actions you believe would help.

To submit, please share your entries at https://curegp.org/gastroparesis-awareness-month-2022/

Collection will be ongoing, so there is no set deadline… but the earlier, the better, as I will need to prepare graphics and other materials by August 1, 2022.

Thank you so much for your help!

Humility

I wrestle with how to express myself in a way that I am understood without sounding as if I am simply whining or making excuses. It should not be this difficult, and the fact that it is tells me we are failing to reach people in ways that touch their hearts.

To the healthy people out there, please imagine with me, if you will…

You are unable to eat more than 500-750 calories per day on a good day and often go completely without nutrition for several days in a row. You are fatigued, nauseous, and in pain. Your sleep patterns are also often disturbed. Your ability to think, reason, and make good decisions are all compromised by this deprivation. You are at your wit’s end, hanging by a thread, barely keeping your head above water.

Yet, you must continue on with your regular activities. You must work, run errands, do household chores, and care for your children and pets. You must make it to meetings, significant events, and social affairs as well. You must seamlessly adjust to any crises or changes that arise, without voicing objection or hinting at hesitation. You must remain polite, professional, and poised at all times, despite your world crumbling around you.

You feel as if you are on the verge of collapse, but the world demands you go forward, never-ceasing, never missing a beat – and that you do so with a smile on your face and a pep in your step. You cannot show weakness, make errors, or fall short of goals… for if you do, the vultures await.

They hover near, seeking any opportunity to scold, berate, convince you that you are “lesser,” worthless. Their words are harsh and their judgment harsher. They await your failure with bated breath, ready to pounce upon your slightest mistake. They offer no grace, no mercy, no forgiveness, and no empathy. They are oblivious to your plight, to your struggles, because these do not match their own experiences. They are unwilling to look beyond their own interests and needs and consider the burdens of others. They are high and mighty in their ivory towers, blessed with health, opportunity, and good fortune. They are perfection in their own eyes. And you? You are a mere mortal, a sinner, outmatched.

I ask you with all the passion and humility I can muster, the next time you seek to judge me – or anyone in my community – pause and consider my circumstances. Try for a second to put yourself in my shoes, and when I misstep, do me the courtesy of showing me the benefit of the doubt. Exercise a bit of compassion, soften your glaring glance, and hold your lashing tongue because you who are so fortunate have little idea what I face. I fail, and I fail often, but I am trying my best, and you know not the effort I expend to simply survive the day, let alone stay on top of the game.

ONCE IN DREAMS

From a dream, soft and tender, she awakes
To the harsh, bitter opening of the day
Feels its icy-cold breath on her neck
And clutches the covers close to her chest

In the realm of the dream, she would prefer to remain
But her body betrays her, and she protests in vain
No lingering in safety, reclaiming moments long-past
For time marches ever onward – forward, not back

She crawls begrudgingly out of her bed
Knowing all too well the misery that lies ahead
She is alone, as these days is most always the case
In isolation, disaffection, her demons she must face

Passes portraits, sweet smiles, as she treads lightly down the hall
But her laughter is missing, unlike the woman on the wall
Carefree snapshots of one she once thought she knew
Shuts her eyes, bites her lip; she is just passing through

Catches glimpses in the mirror of a soul frail and old
This spectre, this shadow, who will never be whole
The best laid plans, off the rails, it would seem
Ravaged by circumstance, victim of fate’s foul schemes

Nearly grasps, almost reaches, vaguely recalls
The woman she once was, prior to her fall
She was fresh and full of hope, passion, and fire
A force to be reckoned with, a spirit to admire

Now saddled and tamed, she relives and regrets
Retraces, to no avail, her missed paths and missteps
She harbors a hole in her heart that won’t heal
Struggles to stay present – some days, to simply feel

Her thoughts never cease to remind her of her pain
Of all she has lost and how little remains
She clings to the remnants as if they were gold
But she finds herself slipping, nothing left to hold

The memories are dreadful; they punish and wound
They rip and they shred; they refuse to soothe
She is trapped in a loop, cannot scale the walls
Confined to her cell, to a prison lacking bars

She longs for serenity, for long-lasting peace
For stability, security, and a sense of relief
She yearns for the normal, for one more good day
But her hope for that future is fading, wasting away

She believes in her Maker, knows something better lies ahead
But she stumbles, lacks wisdom, and sometimes doubts instead
Seeking meaning in this life, her nagging questions persist
Trusts the future, but until then… how does she exist?

She drags through the hours, weary and spent
Endeavors to understand this cruel hand she’s been dealt
She flounders and fumbles and tries hard to resist
The notion it’s for nothing, that something’s seriously amiss

She does what she can to ease the suffering of others
But whether it matters at all, she often wonders
Is she making a difference? Are her efforts well-received?
Has she learned all the lessons? Is her Author well-pleased?

By the end of the day, she has no more left to give
And only hopes that her failings all might forgive
Lies back down in the embrace of her warm open bed
And once again invites the dreams that still live in her head

This Is GP

It is physical agony beyond compare.  It is days and nights spent on the bathroom floor, crying, pleading for someone to make the crippling pain, nausea, and vomiting stop.  It is being too exhausted to focus, too drained to complete chores, and too weak to climb up the stairs to your bedroom.  It is hungering for food, relief, a moment’s peace.  It is praying for an end to the never-ceasing torment while knowing in your heart you will face it again tomorrow.  

It is frustration and anger.  It is watching others eat, work, and play, and wondering why they were blessed with such normalcy while you are fated to be ill.  It is seeking independence but knowing you must now rely on others to perform basic tasks.  It is seeking consistency but realizing you are subject to the whims of this cruel disease and your symptoms can worsen in an instant, destroying the best-laid plans.  It is pushing yourself to the point of collapse and going without eating some days, though you know you should not, just to show this disease who is in control.  It is being endlessly asked if you are okay, listening patiently to well-meaning yet misguided souls offer “remedies” and unsolicited advice, kindly overlooking their pronouncements that you “just need to eat,” explaining the nature of “chronic” illness time and time again, and ceaselessly trying to convince those around you that you might never be “okay” again, not in the sense they imagine.  It is doing everything you are supposed to do – following the diet, exercising, resting, taking your medications, keeping your medical appointments – but still receiving no healing.  

It is multiple levels of worry and fear.  It is checking the menu in advance and wondering how it will look when you only order a drink.  It is searching for a bathroom as soon as you enter the building.  It is carrying emesis bags and a change of clothes in case of accidents.  It is reading the room to know how embarrassed you will be should such an incident occur.  It is checking your watch because after an hour or two you might not be well enough to drive yourself home.  It is worsening symptoms, comorbidities, and flares that grow longer and are more frequent.  It is scary-low blood pressure, poor lab markers, shaky footsteps, and mental confusion.  It is 500-calorie days, liquid diets, tube feedings, and TPN.  It is ER trips and hospital stays that leave you wondering how long you can survive this.  It is not knowing the cause and believing that doctors will never find it.  It is watching your GP friends struggle and sometimes die – and pondering whether you will be the next green candle on someone’s wall. 

It is disappointment and lowered expectations.  It is trying a food again and again, hoping against hope that this time you will be able to tolerate it, and then dealing with the pain of your mistake.  It is going to doctor after doctor, trying treatment after treatment, eagerly anticipating relief, only to have your dreams dashed when it makes no difference.  It is the look of dissatisfaction you see from your boss when you cannot complete an assignment, from your friends when you call to cancel, and from your family when you cannot do your fair share.  It is being unable to meet the demands placed upon you by yourself and others, though you wish with all your heart you could, as you once did.  It is watching your world shrink before your eyes as you constantly try to readjust.  

It is grief and loss.  It is knowing that despite your best efforts, you won’t make it to your job tomorrow, that you will miss your daughter’s play later this week, that the vacation you planned for next month will be put on hold, and that you will be absent from the family Christmas gathering again this year because you are unable to function.  It is wishing your friends would invite you over like they used to but knowing you have disappointed them one too many times.  It is yearning to share a meal with your family, just a simple meal, but being nauseated by the mere smell of food.  It is lying on the sofa on your anniversary instead of spending the evening out and then wondering why your spouse does not look at you quite the way he used to.  It is gazing into your child’s pleading eyes and for the millionth time saying, “I can’t.”  It is the loss of your career, your social life, your enjoyment of food, your spontaneity, your independence, your sense of security, your dignity, and your peace.  It is desperately wanting your old life back, longing to have just one more carefree, symptom-free, “normal” day like the ones you once took for granted. 

 

But Gastroparesis is more than this…

 

It is a teacher of compassion and empathy.  It opens our eyes and our hearts to the struggling souls who surround us who need to be heard and understood.  It demonstrates the depths of physical and emotional pain and makes us far more open and responsive to the similar needs of others.  It admonishes us that there are failures in our approach that must be addressed, that all lives are valuable and all people are deserving of dignity, and that the chronically ill are not merely statistics but living, breathing beings who still have hopes, dreams, and goals.  It develops in us sensitivity, understanding, and a sense of responsibility to those around us.  And it creates in us a desire to make it all better, to serve, to educate, to guide, to dedicate ourselves to easing the pain of others; it reveals meaning and purpose in an otherwise seemingly random world. 

It is a developer of appreciation.  It reminds us that we are not promised another day and that the people and things we once took for granted are precious.  We let go of grudges and embrace our loved ones without restraint because we have learned there is no “perfect time” to tell those who matter that they do.  We embrace the small, beautiful moments because they are so few now.  We pause, soak them in, feel them to the depths of our souls. We seize each second of joy and fully grasp the significance of what we once thought mundane.  It is the ordinary that is special, priceless, and it is sometimes only when we have lost this that we understand.

 It is an encourager of resilience, perseverance, strength of will, and determination.  For despite the vast hardships and obstacles before us, we daily overcome.  We wake, adjust and accommodate, and continue on, even when all seems bleak.  We face our sorrows and our fears, push the pain and fatigue to the far corners of our minds, dust ourselves off, and find paths forward.  We speak out and advocate for proper care and decent treatment for ourselves and others, and we fight for cures so that not one more precious soul must share this nightmare.  Day after day, we endure adversities we never dreamed we could, and we emerge stronger for having survived these trials.  We hold onto defiant hope, earned through fortitude and determination to alter our fates, and we endeavor to one day live the lives that were so brutally stolen from us, or in the absence of this, create new, meaningful lives borne out of this suffering.  We stubbornly refuse to relinquish our dreams and choose, instead, to excel in even the darkest of times. 

#ThisIsGP

Lilly

She enters in the midst of the storm,
Raging at the injustices of the day,

Too much homework, unwarranted grades,
“Who uses this stuff anyway?”

“Mom, they made her cry,” she begins,
“She was lonely, sad, and all alone,
No one seemed to notice or care,
So, I went over and asked her to join.”

In a flurry, singing songs of her day,
Babbling on, chattering feverishly and free,
Throwing hands up, arms swinging wildly,
She exuberantly brushes right beyond me.

She tells the tales of her woe,
Then speaks of moments of gladness and joy,
I try desperately to take it all in,
But I am helplessly, hopelessly slow.

The whirlwind gradually passes,
She is weary, exhausted, spent,
Up the stairs, she sleeps finally in peace,
Lovely spirit; she is indeed Heaven-sent.

Watch her slumber, though she is unaware,
As I recall fondly the long-ago years,
When she was younger and oh-so-innocent,
Close my eyes and battle back the tears.

I once held her closely, cradled in my arms,
And rocked her slowly while she slept,
Kissed her forehead, touched her toes,
A perfect angel I was meant to protect.

It is Christmas and we are driving,
He is freezing, abandoned to the street,
“We have to help him. He is starving,
Can’t we just give him enough to eat?”

Don’t have much, but we oblige,
And still, it is not enough,
Money is not the answer,
“Mom, he needs a hug.”

She stoops to accept and embrace him,
Tears glistening brightly in her eyes,
He is taken aback, astounded,
The look of wonder and surprise.

She lingers, reluctant to leave,
But we must end this – what more can we do?
She has a million questions, so disturbed,
I want to answer – how I wish I knew.

And still, this homeless man haunts her,
Though many years have gone by,
She revisits, relives this moment,
Never leaves her, no matter the time.

Skip my memory, fast-forward,
She is in the yard, saving worms,
It is raining, and “they will drown,”
So, she helps them, as she has once sworn.

She’s in the bathroom, getting ready,
“Daddy, please help the bug,”
“Mommy, don’t kill the spider,”
So compassionate and full of love.

Elementary, middle, and high schools,
Academics, sports, and clubs,
Bumps, and bruises, and heartaches,
Somewhere along the line, she grew up.

Becoming the person she’ll one day be,
Separate thoughts, different views all her own,
Branching out from the old and familiar,
Stepping away from the world she has known.

I marvel at her grace and her beauty,
As I help her get ready for her first prom,
I am anxious and nervous, feel I’m losing her,
“He’s nice, so please don’t worry, Mom.”

Her bicycle gathers dust in the garage,
It has now been replaced by a car,
I prepare for the day she will leave us,
As we assess colleges both near and far.

Where is my little one, my child?
It seems like a dream, all a blur,
The young woman now standing before me,
Tells me time has flown swiftly and sure.

I bend down and whisper I love her,
Begrudgingly go back to my bed,
Hate to leave her and pray she is safe,
That we have many good days left ahead.

Morning breaks and the tempest begins,
She’s in a hurry, a bustling gust of wind,
But I am shouting, crying, sick, and drained,
Wishing illness away, I am at my wit’s end.

Silent and unsure, she enters the room,
No solutions or wisdom, nothing to discuss,
She rubs my back and embraces my shoulders,
She is sufficient – in this moment, more than enough.

GRACE LONG-FORGOTTEN

You think yourself virtuous, faithful, and true,
Faultless, flawless, perfection,
A bastion of moral superiority and authority,
Spitting image of God’s own true reflection.

But who are you to denounce the fallen?
What gives you the right to judge?
Sentencing from your pristine ivory tower,
Stubbornly refusing to budge.

You’ve no right to pontificate and condescend,
To the sorrowful whose lives are so burdened,
By chance, by fate, by regret, and disappointment,
Those abandoned, cast out, and deserted.

For you see but a single moment in time,
A life shattered by cruel circumstance,
A being who might have been glorious, divine,
One which cannot be known by first glance.

From your safe, lofty perch, far above the fray,
You pronounce remedies and rain down your wisdom,
But your words fall hollow, shallow, and cold,
Upon the ears of the unenlightened unforgiven.

Your curses and condemnations steal their hopes,
And crumble their precarious self-esteem,
Weigh mightily on their troubled minds and souls,
Resign them to mediocrity, crush their dreams.

You cannot inspire through loathing and contempt,
Though in your callous shadow they may cower,
You only frighten, discourage, enslave, enrage,
Cannot lift them by virtue of your own power.

Come down from the top of your towering mountain,
Step out of your unyielding fortress,
Walk among the lowly, the simple, the unassuming,
And for their grievances, offer remedy, redress.

Encourage the faithless who helplessly struggle,
Those blinded by the harshness of life,
Offer succor, mercy, and sweet gentle comfort,
Show them the beauty of the Light.

For you were once where they find themselves,
But for the smallest, simplest twist of fate,
And by the grace of God – long-forgotten,
You were granted the narrow and straight.

You retain your position, your stronghold,
Atop a tenuous, temporal throne,
On the wind, at the whim of the Power on High,
Through no effort or real merit of your own.

You were chosen to minister, serve, and attend,
Called to help the impoverished and downtrodden,
Not to bask in the glory of your personal fame,
Nor be self-centered, narcissistic, and haughty.

So, humble yourself before your Maker above,
Before the masses, bow low your pride,
Open your heart and restore your soul,
See the world with newly-found eyes.

Embrace and enfold the long-suffering others,
Hold them gently just under your wing,
Offer soft, soothing tunes of forgiveness,
And together, we will learn how to sing.

WHAT YOU MEAN TO ME

Joy and heartache, triumph and despair,
Hard-fought battles and arduous trials,
No matter the tests or tribulations that come,
We face them all together, side-by-side.
 
Your gentleness and true affection,
Understanding and thoughtfulness,
Touch my once-callous heart, my troubled soul,
Leave me thankful, deeply humbled, profoundly blessed.
 
Though burdened with hardship and ailment,
My life still has purpose and meaning,
For I have found in you beautiful people,
A reason to try, to aspire, keep believing.
 
I have hope that we can usher in change,
That together, we can all make a difference,
That the world will open its blind, passive eyes,
And we will then see our splendid deliverance.
 
That the deaf will soon hear our passionate pleas,
For mercy, tenderness, and human kindness,
That we will promptly have a cure, or a measure of relief,
So we can rise – and leave this cruel illness behind us.
 
You are forever in my thoughts and my prayers,
Such precious, treasured, priceless souls,
My friends, my focus, my fondness, my devotion,
Worthy of effort, deserving of a voice.
 
So, I offer you my undying love song,
Pale and inadequate though it may be,
That you might know you are valued and cherished,
And understand how much you all mean to me.

HOME

The call in the middle of the night,

For which one is never prepared,

Unwelcome guests on the doorstep,

With heart-wrenching news to share.

 

We try to process the horror,

Sit in stunned silence, confused,

Cannot accept the certitude, the finality,

The mind rejects the mind-numbing truth.

 

Devastating, life-changing utterances,

Fall upon unprepared ears,

Words conveying brutal realities,

Our worst and suddenly confirmed fears.

 

Gone with no warning, in a moment,

Gone with no chance for goodbyes,

Gone while we all slept at peace,

Gone in the blink of an eye.

 

Agony and grief beyond compare,

Tears of sorrow now freely flow,

Devastation descends on our hearts,

Realization dawns ever so slow.

 

Try to make sense of the senseless,

But the nagging questions remain,

Did she struggle and did she suffer?

Was she aware and was she in pain?

 

Did she feel the love of her Savior,

In those last precious moments on earth,

Was she aware of His arms wrapped around her,

In death as they had been from birth?

 

Was she comforted by His sweet song,

When welcomed into the glorious light?

Did she feel the depths of His compassion,

While ushered out of this darkest of nights?

 

Did she know of His unknowable mercy,

Of His free and unmerited grace,

Comprehend His unfathomable love,

When she at last gazed upon His face?

 

And has she now found peace, so elusive?

We pray she knew how much we loved her,

We mourn, and we ache, and we weep,

Find comfort in the kindness of others.

 

This life is so fleeting, so brief,

A precious and glorious gift,

We are here and gone in an instant,

The days flowing onward and swift.

 

This world is not our final destination,

Not our hope, or our rest, or our home,

We were meant for another, our Maker,

And to Him we lovingly belong.

So, breathe in the beauty around you,

And cherish the ones you love,

Embrace them while they are still near you,

Hold tight to the memories when they are gone.

GASTROPARESIS AWARENESS MONTH 2020: #WarOnGP #GPRevolution

Six years ago, on Valentine’s Day 2014, I was diagnosed with Gastroparesis, and my life was, from that moment on, forever altered. Since diagnosis, I have endured much and have learned even more. I advocate because it saves me from despair and adds meaning and purpose to my life, despite the harsh effects of this cruel illness.

Over time, I have set many goals for myself and for this community, and chief among them is convincing my people how incredibly strong, skilled, able, and special they are. This is not an easy sell, since the world has convinced many of them to buy into the lie that chronic illness makes one weak and worthless.

But nothing could be further from the truth.

I have witnessed agony beyond compare in our GP groups, horror stories of neglect by friends, family, and the medical system; physical, mental, and emotional pain and abuse; career loss, financial bankruptcy, homelessness; hopelessness; and death. I have also witnessed unrivaled compassion, empathy, and spirit and am frequently awed by our members' generous gifts of time, information, advice, and encouragement to other members in need, all while they themselves struggle to get through the long, dark days. Time after time, they pick themselves up, dust themselves off, and find ways to survive, despite the difficulties.

Yet these feelings of worthlessness and inadequacy persist and are perhaps heightened because, despite our monumental efforts, we still have no cure. Last year, in an attempt to pass HR 3396, the Functional Gastrointestinal and Motility Research Enhancement Act of 2019 (a budget-neutral, nonpartisan bill that directs the NIH to expand and intensify its research and education efforts in regard to digestive disorders such as gastroparesis), at my urging and with a strong desire to unite for our cause, members of my Gastroparesis: Fighting for Change community sent hundreds of letters to their congressional representatives and made countless telephone calls urging these lawmakers to sign onto the bill.

In addition, in June of 2019, despite the physical and financial challenges, many of us traveled from throughout the nation to Washington, DC, for an unprecedented patient rally that highlighted our hardships, our need for proper medical care, our lack of research funding, and our desire to once again live “normal” lives. We gathered the day after that rally and (with the help of a disease-related nonprofit who assisted us in scheduling) met in person with our legislators on Capitol Hill. At home, in our individual states, those who could not travel with us hosted a virtual March on DC as well, and a few months later, we followed this up with a Virtual Advocacy Day, designed to sway our legislators to finally open their eyes to our plight and cosponsor our bill. We shared our stories, bared our souls, and put forth our best effort to make a difference for our gastroparesis community.

The result? To date, we have a whopping 22 cosponsors. Yes, that’s right… 22 out of our 435 House representatives deemed us worthy of help… 22.

Now a lesser group of people might have given up at this point, especially considering that in past years, with far less action and advocacy, the bill garnered nearly the same level of support. But is that what we did? No, because we are neither incapable nor apathetic. We regrouped, and a handful of volunteers researched and called the offices of those representatives who so blithely dismissed their own constituents, and we gathered the names and contact information of the health staffers of every single legislator who turned a deaf ear to our cries. And in less than one week, we sent follow-up letters to 185 congressional offices representing 349 constituents. That kind of effort and support from a community our size is unheard of.

Despite the daunting task and the overwhelming odds against us, we answered the call. And we will continue our efforts to educate legislators about our illness and inform them of our needs so that every man, woman, and child in our gastroparesis community can receive competent, compassionate care and so that we are granted much-needed research funding that tackles the causes of our illness, rather than merely symptom control, and which brings us cures rather than band-aids. We must have our lives back!

The current healthcare system has failed us, and the powers that be believe we should sit in silence while they “guide” us to our slaughter. But we are not helpless sheep, nor are we inept or unmotivated, and we vow to make the voices of the more than 5 million of us heard by everyone who impacts our care – our families and friends, the medical community, the researchers, our legislators, the media, and the general public. My friends are suffering and dying while the whole lot of “influencers” gain wealth and prestige at our expense, and we have had enough.

Make no mistake, we are in the midst of a War on GP, a GP Revolution as we like to call it, and we can take no prisoners. We are committed to meaningful change for our community. We can and will realize our goals.

Answer the call. Suit up!