Sunday, August 12, 2018

Be Bold for Gastroparesis (#BeBold4GP)

August is national Gastroparesis Awareness Month, and we need your help!  

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 marked by symptoms such as nausea, vomiting, GERD (or acid reflux), early satiety, and stomach/abdominal pain, and it can lead to some potentially serious complications such as extreme weight fluctuations and erratic blood sugars, chronic fatigue, esophageal damage, blockages of the digestive tract, dehydration, and malnutrition.  Currently, there are no consistently safe, reliable, and effective treatments, and there is no cure.

The NIH estimates 5 million or more of us live with gastroparesis, but despite our numbers, we are considered an “orphan” disease due to the lack of resources, support, and attention we garner.  Gastroparesis is little-known to the public and often misunderstood by healthcare professionals 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.

On a personal note, I began to advocate for the gastroparesis community shortly after my diagnosis (February 2014), upon joining an online support group where members shared stories of their struggle to be heard, understood, and cared for, by not only their loved ones, but also by segments of the medical community blind to the nature of this illness and the requirements of this population.  It quickly became clear to me that many of us felt stigmatized and abandoned and were in desperate need of proper care, and, so, I decided I could not remain on the sidelines and do nothing or listen to people who told me I could not make a difference.  I decided to “be bold” for the people in my community who feel as if they have no control over their circumstances and to serve as a voice for those who sometimes feel voiceless. I have since been joined by many others who share that desire to make a difference and that passion for change.

Collectively, we fight for all involved in our care – loved ones, medical professionals, insurance and pharmaceutical companies, and policymakers – to work together for our good.  We wish to be valued as the unique individuals we are, to be believed, and to be treated with compassion and dignity by all who touch our lives.  Further, we push for those in power to respect the seriousness of our illness, acknowledge the hardships that flow from it, fund research, support education and awareness, and recognize gastroparesis as the debilitating condition we know it can often be.

We work toward a healthcare system comprised of doctors/specialists who are informed about our illness, who are near enough and plentiful enough that we need not travel long distances for treatment, and who are readily available for appointments, so our care is not delayed. We seek physicians who acknowledge our humanity and respect our individual wishes and goals, who are willing to help us understand our care options and collaborate with each other and us to find treatment plans which improve our quality of life, as we define it, rather than abandoning us because we are "too complex" and there is "nothing more" they can do.

We urge researchers and pharmaceutical companies to search diligently for innovative, safe, effective, and affordable treatments and cures – and we call for adequate funding of such pursuits.  We implore the FDA to streamline processes and expedite new drug approvals, and we ask our insurance companies to cover treatments which we know from personal experience help with our symptoms.  We fight to be free to make our own choices and to weigh the risks of medications and therapies for ourselves.

We beseech our loved ones to look upon us with compassion and treat us gently, to believe this illness impacts our lives in meaningful and significant ways, and to respect and accommodate our very real physical limitations.  We ask for their kindness, patience, and support, for their listening ears and accepting hearts, and for their assistance in spreading awareness. 

We demand nothing short of a world in which all involved in our care are educated about our illness, comprehend its impact on our lives, offer support, respect our right to self-determination, aid in spreading awareness of our disease, and assist us in getting the help we so desperately need. We hunger for the day where we are no longer overlooked, unknown, taken for granted, mocked, or mistreated, but, rather, where we are heard, cared for, and valued by all those who hold the power to spread our message and transform our care.

We in the gastroparesis community face daunting challenges, but we are not without hope, passion, ability, or recourse!  We encourage providers, patients, patient groups, family and friends, and the public to educate others about this life-altering chronic illness.  And this August, we invite you to join our #BeBold4GP campaign, as we stand up, speak out, and fight to raise awareness in our quest for better treatments and, ultimately, a cure. (Please see our video presentation at https://youtu.be/n7Db1UWgcXM.) 

#BeBold4GP and help us usher in the changes we seek!




Thursday, July 12, 2018

CURED?

It does not mean I am "cured" if

... you see me eat a cookie. It most likely means I am so hungry and tired of protein drinks and Kefir that I am willing to cope with nausea and/or vomiting just for a moment's pleasure, for a mere morsel of a food I have not tasted in years. It might also mean I am fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so means agony beyond compare.

... you see me out, perhaps enjoying a movie or concert or watching my daughter's school play. It most likely means I am so tired of looking at four walls I could scream, and if I do not get out for just a few hours, I fear I will go insane. It also means that even though I will pay for this dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face for a change -- to know that for a brief time, we did something "normal" together and I did not disappoint her, as I have done a million times before, by my absence. It also undoubtedly means I have gone completely without any sort of nutrition for the few days leading up to this event because that is the only way I can manage to leave my home now -- as eliminating life-sustaining food and drink is the best chance I have at also eliminating the pain and nausea which would prevent me from attending such outings. Oh, and when the event ends, I will most assuredly go a few days more without nutrition, as the outing itself will sicken me to the point I cannot immediately bear the added suffering of eating and drinking.

... I say I am fine. I do not mean "fine" as you perhaps define it. I mean that as a serious, excruciatingly painful, life-altering, daily chronic illness goes, this is not one of my absolute worst days, and I may actually survive it. Alternately, I may mean, "I know you do not really want the truth and are simply being polite, so I am going to do us both a favor and tell you what you wish to hear, even though I feel as if I may collapse at any second." My smile often masks my true emotions and symptoms and is intended only for your comfort.

... I speak of a medication, food, or therapy helping a bit. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or means I experience nausea but no (or rare) vomiting. This does not mean I am suddenly able to function at 100% or that I am now fully participating in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow, and, in fact, all "remedies" I have ever tried have eventually failed to improve my situation. Oh, and one more thing... when you ask me if I have tried "X," rest assured, I have.

... I write an essay, post a video clip, or join a Twitter chat. It means that, despite the struggle, I manage to show up and fight because I love this community dearly and NOTHING is more important to me than finding them (and me) a genuine cure.

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

CAN YOU SEE US NOW?

Sunday, June 17, 2018

PRAISE FOR A “GOOD DAD” ON FATHER’S DAY

My husband has always been a loving father, one actively involved in our 14-year-old daughter’s care, but I am not sure we fully understood the implications of being a “good dad” until I was diagnosed with gastroparesis.  Some days, it seems my husband has, out of necessity, been called to be both mother and father, in a sense.  His life now consists of rising every day, performing the household chores I can no longer complete, taking care of our child’s many needs, acting as chauffeur, maid, butler, and general caretaker – all while holding down a job outside the home.  And though I am sure the pressure is sometimes intense, and he surely must feel the weight of his additional responsibilities, he has never once approached his expanded role as anything other than a privilege.

He is the kind of man who chooses to embrace rather than reject the hardships sent his way, and instead of seeking to lessen his load, he strives to find ways to accomplish more, to better assist and serve our family.  He is the kind of father who loves his child whole-heartedly, who teaches and guides, who models compassion and concern, and who would gladly sacrifice most anything to help our daughter reach her potential.  He puts the needs of our family, and especially our daughter, above his own and has sacrificed both career goals and personal pursuits in the interest of our household.

The nausea, pain, and fatigue which accompany my illness and which take not simply a physical but also mental and emotional toll, limit my engagement in activities outside the home and prevent me from completing household tasks and chores which once fell squarely on my shoulders.  The division of responsibilities, once nearly equal, has shifted heavily to my husband’s side since my diagnosis.  He is now tasked with toting my daughter back and forth to school, extracurricular events, and family gatherings, where he is almost always the sole attending parent. And when he arrives home at the end of the day, exhausted from his outside job, he cannot yet rest; his evening is filled with cleaning, homework assistance, and menial duties related to my medical care.  I hear him sometimes, late in the night, working on some unfinished project while my daughter and I lie snug in our beds, toiling to complete whatever assignment was left undone for lack of time.

He is a playmate and friend who spends countless hours losing board games, taking walks, and engaging in a good game of basketball, softball, or badminton with our child – all the things I once gladly joined but must now largely view from the sidelines.  He has become art critic, voice coach, speech teacher, wardrobe coordinator, chief trick-or-treater, birthday cake baker and party host, and teenage shopping-spree director.  He does his best to make up for my absence.

And on top of it all, he is often called to act as peacemaker and consoler.  When I am fatigued, overwhelmed with my symptoms, and not quite thinking or behaving rationally, he is the one who must calm me and comfort our daughter – shield her from the cruel effects of this illness (and my frustration) and assure her all will be well.  Many is the occasion I have heard him whisper to our child, “You have to try to understand and forgive Mommy.  She’s just tired and sick.  She doesn’t mean it.” He listens endlessly to my daughter’s complaints about homework, classmates, and the “unfairness” of life, though I know he must surely wish to tune it out, sit and relax, and escape his own troubles for just a moment, and he prays with her for my peace, strength, and healing and for mercy on us all.

He is the voice of reason, a calming presence, and a steady hand, the “glue” which keeps our family intact, and he exerts a never-wavering confidence that we can continue to get up every morning and do what is necessary to get through the day, whatever that may mean.  He pushes forward, onward, and pulls us with him, alongside.  He is teacher, counselor, caretaker, role-model, servant – and, above all, “Good Dad.”

Happy Father’s Day to my husband and to all dads called to serve in this challenging world of chronic illness.  Here’s to you!


Tuesday, March 6, 2018

The "Chin Up" Approach

I am a “suck it up” kind of person. I allow no excuses from myself and demand much. I am strong-willed, confident of my ability to survive and master difficult circumstances, and determined to persevere regardless of sometimes poor odds. I am educated, assertive, and capable of taking control over those aspects of my life which can be controlled. I am not helpless, hopeless, or weak. My outlook on life, though admittedly realistic, is, nevertheless, optimistic and positive overall. I am generally at peace, have a deep sense of purpose, and experience great joy despite the hardships in my life.

But I also have periods of doubt, sadness, and anguish, and because of this, I can appreciate human frailties, even in myself, and I accept them as a given. Further, I have profound compassion for those who find it difficult to see the light at the end of the tunnel, whose lives have taken unexpected and unwelcome turns, and whose outlook is less than sunny. Life is not a circus, and people do not spend their days in a perpetual state of bliss. They have times of great suffering, despair, and depression. This is normal, and, I would argue, not necessarily harmful but, rather, an essential part of the eventual healing process – confront and repair, so to speak.

Now, I must say, as one who views the world in this manner, I have currently had my fill of those who seem intent on making the struggling souls who surround me feel as if they are engaging in wrongdoing or somehow failing at life should they have a sorrowful thought, a not-so-rosy momentary perception of the world, fleeting feelings of grief and loss, or a brief sense of hopelessness. This “tyranny of positivity,” as it is named, the reign of which is heralded in some segments of society, particularly disturbs me when it pertains to my Gastroparesis community. As many in my community reflect upon their current circumstances, they find they sorely miss the things and people of the past. They face loss, regrets, disillusionment, unfulfilled dreams, broken promises, and shattered relationships. This all seems a part of life to me, and I view it as a cry for empathy rather than an admission of utter failure and a desperate plea for instruction from those enlightened few who feel the need to instruct others as to how to live.

Yet, all too often, when I see a pronouncement of hardship made by someone who has lost a loved one, is mourning her old life, or is lamenting the fact that she can no longer care for her home and family, maintain employment, complete her education, attend events and celebrations, or engage in other activities once a normal part of life, I likewise witness an array of responses which, rather than seeking to comfort this person, blithely dismiss the significance of her struggle, reprimand her approach, or attempt to nullify her very real concerns and emotions and usher in their personal vision of positivity to the circumstances at hand. (“Oh, honey, it is for the best,” “Well, at least you don’t have X disease,” “It doesn’t do any good to cry about it. Find the blessing in this,” “Chin up,” “What you should do is…,” and “If you would try harder to…,” come to mind.) Some may merely view this as encouragement, but it seems to me people are quite eager to offer unwelcome criticism and advice and not nearly willing enough to console a hurting, grieving human being.

Well, let me tell you plainly, from what I have been able to surmise, sometimes people do not need nor want your words of wisdom or your (perhaps) well-intentioned but ill-timed advice. They do not wish to hear what YOU would do or think they should do, and they do not desire diatribes about what is “healthy,” where they went wrong, or how their situation affects YOU and others. They do not need one more person pointing out their flaws, their shortcomings, or the error of their ways.

What they long for, what they require, instead, is your understanding and your compassion. They simply need you to sit with them quietly, wrap your arms around them, and let them feel, genuinely and passionately, the overwhelming sorrow and pain. They need a moment of self-pity, regret, guilt, shame, sadness, anger, or loathing of their circumstances. They need to “vent,” cry, wail, and rage without fear of condemnation and minus subtle indictments that they have somehow failed by not being “upbeat” enough. They ache for you to save the cheerful speeches and rally cries for a moment when they are not in such dire straits. They yearn to hear are sorry for all they have gone through and all they have lost. They want to know that although you may not be experiencing the same emotions, you genuinely understand and care that they have been touched by them – and that no matter how bad things get, you will be there for them, offering a nonjudgmental shoulder to cry on and a gentle, sympathetic touch.

They seek your acknowledgment, your confirmation, that what they have lost and now mourn holds significance and meaning – that the absence of such is, indeed, a great hardship. When one overlooks or downplays this sorrow, one essentially communicates that the circumstances or the people being grieved are not nearly as remarkable as those lamenting their loss believe them to be. And when one decides for others that it is time to let go, that there have been enough tears, or that “harmful” behaviors must now end, one minimizes the struggles of others and denies them the validation they require to adequately process their loss and move forward in meaningful ways.

These despairing, brokenhearted souls cry out in agony because they long to know someone, somewhere sees their tragic losses, the outrageous injustices they have endured, and the monumental effort it takes to overcome such adversities. They are not weak or senseless or incapable of optimistic thought and positive emotions; they are merely suffering and must grieve as it suits them and progress in the manner of their choosing. So, please, save the stern, accusing denunciations and the “buck up, rah-rah” speeches, and simply offer your open ears and hearts. The philosophizing, moralizing, reproach, instruction, and advice can wait for another, better day.


Friday, February 16, 2018

NOT YOUR BURDEN

I am likely breaking from much of the general population and from some in the chronic illness community with the following denunciation.  So be it.  I do not view the world in the same fashion as many others, and I make no apologies for that.  I do not feel the need to “fit in” or be accepted by those who ignore the plight of the lesser and care only about their own state of affairs.  I am my brother’s keeper – and that is a gift.

My issue today is with a doctor’s remark made to one of our gastroparesis support group members after she sought to discuss with him the recent deaths in our community.  When she expressed her concern and distress over the numerous passings, he coldly replied, “That is not your burden.”  Now, I am guessing his intention was to calm her, his misguided attempt to assist her in coping with “unnecessary” stress, but, nevertheless, his comment rings shallow and heartless and conveys a deep and troublesome belief that we hold no responsibility for anyone beyond ourselves.

Let us begin with the concrete and most obvious issue: The good doctor’s statement does nothing to address our group member’s real concern – which is her fear that she will someday be a candle on our memorial wall, too.  (Yes, the effects of this cruel illness can be life-threatening, and many of us wonder much the same.)  The good doctor clearly lacks insight into his patient’s psyche.  In addition, his remark ignores the impact of community on his patient.  In our support groups, we become connected, not merely as patients who share information about our illness, but also as individuals with unique interests, passions, skills, dreams, goals, personalities, and traits which attract us to each other as individuals and not simply “sufferers” of the same chronic illness.  In short, we become friends, and we care for each other sometimes as deeply as we do our “real life” family members.  Our connections run deep, and when there is a death, it is not the passing of a random stranger with our illness, it is the death of a companion whom we have grown to know and love.  Not quite as easy to ignore as the good doctor might first imagine. 

But I take further issue with his statement – “Not your burden.”  Then whose, Good Doctor? Who will claim responsibility for the ill, the struggling and dying, the less fortunate?  

Clearly, our deaths are not the “burden” of our government, which fails to pass health legislation granting us access to affordable quality care and denies us much-needed research funds, despite the lack of safe, reliable, and consistently effective treatments or a cure.  Our deaths are likewise not the “burden” of the policymakers who refuse to establish disability guidelines which recognize the serious life-altering and sometimes life-threatening nature of our illness and grant us a measure of financial stability, and who, through the misguided notion of FDA “protection,” ignore our right to make our own decisions regarding risk and quality of life and, instead, prohibit us from accessing treatments which could (perhaps) alter our fates for the better.  They are content to ignore our dying pleas.

Our deaths are not the “burden” of the far too many doctors who lack the knowledge and/or will to help us, who are too few in number and too far from our homes to provide regular care, for whom we must wait months on end to see, who are content to dismiss us as hypochondriacs or drug-seekers, and who push us out their doors because we are "too complex" and there is "nothing more" they can do.  Nor are our deaths the “burden” of emergency rooms where we are refused meaningful treatment, turned away, left in agony, directed back to the very physician who likely sent us to their establishment in the first place, and offered no relief, no hope, and no reasonable alternatives in the midst of our fear, crisis, and pain.  They are content to ignore our dying pleas.

 Neither are our deaths the “burden” of the pharmaceutical companies who price potentially life-saving treatments beyond our reach in the name of the almighty dollar and who hide the risks and ill-effects of their newly-developed, priced sky-high, profit-making drug. Nor are they the “burden” of the insurance companies who deny us those drugs and other treatments we know from personal experience will help with our symptoms, and who, despite profiting from excessively costly premiums, continue to place greater value on money-making than on human life.  They are content to ignore our dying pleas.

Our deaths are not the “burden” of mass media members, who have never heard of our illness or, at best, view it as a “little tummy trouble” and either deny us coverage or continue to disseminate incorrect information.  Though they can sometimes tolerate the chronically ill when we hide our skeletal frames and “negative” emotions and present only sexy, prettied-up versions of having overcome incredible odds to survive, they want no part of our messy stomach and bathroom issues, our tubes and scars, or our despair at facing starvation and ultimate death.  They are content to ignore our dying pleas.  

Sadly, our deaths are often not even the “burden” of our families and friends, who refuse to believe, accept, learn, understand, show compassion, or spread awareness of our illness, and who choose, instead, to mock, belittle, ignore, abandon, and abuse.  They are content to ignore our dying pleas.

So, again, I ask: Whose burden, Good Doctor?

I will answer for you: These deaths are MY “burden” – and I willingly, gladly, and passionately take up the cross.  My own comfort and my personal happiness are infinitely less important than the fate of those who face hardships and death, and my well-being is intimately connected to and dependent on the well-being of those around me.  And there are others (including the patient who sat before you and who you so blithely dismissed) who answer the call and bear this burden beside me, as well, because, you see, these deaths may be burdensome, but our fellow human beings are not.  They are precious, priceless souls, worth the effort, and deserving of a voice.  I can bear that responsibility, be that voice – and so can you – as politicians, policymakers, medical professionals, insurance and pharmaceutical executives, media members, family and friends, and fellow chronic illness survivors.  Do not be content to ignore the dying pleas.

No, my group member’s (my friend’s) response to the suffering and death around her was genuine, virtuous, and true.  While much of the world screams, “live for self,” I will tell you, “lose yourself.”  It is only through attending to others that we find meaning and purpose.  My “self-care” rests upon caring for others, and it is through serving I find ultimate happiness and peace, well-being.  I am responsible for the lesser among us – and so are you – all of you.  Despite what you have been told by the world, you must not continue to ignore the plight of the less fortunate who surround us and daily cry for our attention and assistance.  This life was not meant to be all about “self,” and we cannot flourish individually or as a civilization so long as our focus remains only on our own success, pleasure, and gain.  How have we so easily lost sight of that?

Good Doctor… You err.  Whose burden?  Mine, yours, ours.



Saturday, February 10, 2018

As the World Turns



I remember thinking the day my mother died (and for some time thereafter) it was somehow wrong that the world should keep turning, going about its business as if nothing of significance had occurred. It seemed unjust to me that the whole earth did not stop to acknowledge one of its glorious souls had passed. 

Now, as I witness friends in my community dying, one by one, I have much the same thoughts. People pass from among us, and yet we seemingly do not have the time or the sensibility, the compassion, to pause for a moment and reflect upon the unspeakable loss this world has just endured or dwell for an instant on all the unique gifts these beautiful beings bestowed upon humanity.

Death is a cruel thief who steals our loved ones away when we least expect it. We are unprepared, and our grief is amplified by the refusal of the world to allow us to catch our breath and regain our footing, by its cruel insistence on ceaselessly revolving.

I, for one, will never forget the precious souls who have walked among us and touched our lives in ways we might not fully recognize until after their passing. Please stand still for only a moment and feel the magnitude and gravity of such pure loss. It matters. We all matter.

Wednesday, January 31, 2018

PLEASE SUPPORT H.R. 1187: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017

Please support H. R. 1187, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017, which was introduced in the House Energy & Commerce Committee by Rep. James F. Sensenbrenner, Jr. (R-WI), on February 16, 2017, and referred to the Subcommittee on Health on February 17, 2017. This bill would expand research, increase funding, and promote awareness and understanding of devastating functional gastrointestinal and motility disorders which greatly impact the lives of millions of sufferers.

These disorders, which include gastroparesis, Irritable Bowel Syndrome, dysphagia, dyspepsia, GERD, Cyclic Vomiting Syndrome, Chronic Intestinal Pseudo-Obstruction, and numerous other digestive tract disorders and diseases, are truly life-altering, commonly debilitating or life-threatening, and often have few (or no) safe, reliable, and effective treatments or cures. Available treatment options are frequently accompanied by serious side effects and risks as well. The millions who suffer from FGIMDs deserve awareness and expanded educational efforts on their behalf, increased research funding, and better, more effective treatments or cures.

A brief summary of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 as established by the Library of Congress reads as follows:

“This bill amends the Public Health Service Act to require the National Institutes of Health to expand, intensify, and coordinate its activities with respect to functional gastrointestinal and motility disorders (FGIMDs), including by:

  • expanding basic and clinical research into FGIMDs by implementing the research recommendations of the National Commission on Digestive Diseases,
  • providing support for the establishment of centers of excellence on FGIMDs,
  • supporting innovative approaches to educating health care providers and patients regarding strategies that improve patient-provider relationships and care,
  • directing the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to provide the necessary funding for the continued expansion and advancement of the FGIMDs research portfolio, and
  • directing NIDDK and the Eunice Kennedy Shriver National Institute of Child Health and Human Development to expand research into FGIMDs that impact children.

The Department of Health and Human Services may engage in public awareness and education activities to increase understanding and recognition of FGIMDs.”

Please ask your congressional representative to expand research, increase funding, and promote awareness of functional gastrointestinal and motility disorders by supporting H. R. 1187. You can find additional information and read the text of the bill at https://www.congress.gov/bill/115th-congress/house-bill/1187 or https://www.govtrack.us/congress/bills/115/hr1187. You can find contact information for your representatives at https://www.govtrack.us/. You can find a sample letter to send to your representatives at https://www.iffgd.org/advocate-for-digestive-health/taking-action-in-washington/sample-letter-to-congress.html.

Thank you for your consideration!

*Please note: This bill was formerly known as H. R. 2239, H. R.  842 and H. R. 2311. All three bills died in previous congressional sessions; H. R. 1187 is the current (115th Congress) reintroduction. It is essentially a new bill and must begin the entire process again if it is to be passed. At the time of this writing, this bill had only 7 cosponsors, and we desperately need additional support.  Skopos Labs, a data analysis company which evaluates congressional bills, has given H. R. 1187 only a 14% chance of enactment.  (This seems bleak, but the bill received a mere 3% chance of enactment during the last congressional session).  This bill must pass out of committee, be approved by both the House and Senate in identical form, and be signed by the president by January 3, 2019, to be enacted as law.  If it fails at any point in the process, it must be reintroduced in the next congressional session and begin its journey again.  The bill gains support with each reintroduction, but we need advocates to contact their representatives and encourage them to cosponsor the bill in order to make significant progress toward enactment.

Sources:

“H.R. 1187 — 115th Congress: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.” www.GovTrack.us. 2017. January 31, 2018. https://www.govtrack.us/congress/bills/115/hr1187


“H.R.1187 - 115th Congress (2017-2018): Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.” Congress.gov | Library of Congress - https://www.congress.gov/bill/115th-congress/house-bill/1187/all-info





Friday, January 26, 2018

ABOVE THE BRIM

























ABOVE THE BRIM

In the pit, I awaken, much to my horror,
Sameness before me, day after day,
Dark, bleak, cold as midnight,
The light far above me, distant, faint.

In this world where I linger and wait,
In the midst of such pain and such wailing,
Slowly stir, try to move, try to breathe,
But my body betrays me, seeks to fail me.

Crawl to my knees, dazed and in a haze,
Muster up the nerve to face the day ahead,
Cruel and unrelenting pass the hours before me,
I and my cellmates – barely alive, the walking dead.

My gaze once again falls upon them,
The ill, the suffering, the forgotten,
I have lived so long in the thick of this,
No escape, no release, hope wearing thin.

They beseech me to help, but what can I do?
No strength, little courage, few plans,
I stand on my feet and glance upward,
And yet again begin this macabre dance.

I long for the radiance shining downward,
Wonder why I was sentenced to this fate,
What crime or wrongdoing have I committed?
My answer – and my release – I await.

One last look at the masses which surround me,
Piteous souls lost in abandon and torment,
Grab onto the high walls of my prison,
And slowly, methodically, begin my ascent.

I clamber and cling and claw my way upward,
And gradually make a measure of weak progress,
Stumble backward, regain my footing, and continue,
Hoping this time for some minor success.

I remember with fondness my time above ground,
Days filled with love, laughter, and delight,
Nothing but joy and grand achievements,
But wait… something’s off… Is that right?

In my doubt, I look downward, uncertain,
Into the abyss of tattered, sorrowful souls,
Crying out for understanding, for assistance,
But I am one, and I struggle; I am not whole.

There are demons in the chasm, I am aware,
Ego, apathy, bitterness, hatred, and strife,
Cruel, skilled masters of chaos and abuse,
Who add nothing more than anguish to this life.

I am saddened but reminded I am powerless,
Cannot alter the others’ fates or their plights,
Cannot possibly face the monstrous hurdles,
So, once more, resume my climb to the light.

I am close to the summit I have longed for,
Near the top – salvation is in sight,
But it is not quite as I had imagined,
Not as I remembered – no, not quite alight.

At the brim, I peek over, expectant,
But the bright rays I envisioned are not there,
Is my memory mistaken, glossed over?
If not above me, beyond, then from where?

From below me, a low murmur escapes,
A soft voice from the depths, not above,
I hear Him quite clearly, no mistaking,
“It is a gift, not a punishment, my love.”

Not the words I anticipated or welcomed,
But true, and I knew it in an instant,
At the brim, closed my eyes and relented,
Released my grip and began my descent.

Falling into emptiness and blackness,
Ever downward till the bottom I reach,
The gravity and finality of my choice,
Weighing heavily upon me, I weep.

But as the tears fall wistfully and freely,
My eyes catch a glimmer, a soft flame,
In this black Hell of eternal damnation,
My heart and soul feel hopeful and ablaze.

For the illumination which grows ever brighter,
Is within me, all around me, it surrounds,
Never far from above as I imagined,
But a product of compassion so profound.

It lives among the lessers, the others,
And it grows ever-brighter in my soul,
When I let go of false remembrances and desires,
Accept the Truth which fulfills me, makes me whole.

Wednesday, January 17, 2018

PATIENT-CENTERED CARE? WE CAN DO BETTER!

And yet again, I must write about a patient who has gone through needless agony and expense in an attempt to garner assistance from one of the "top" motility clinics in the country only to be denied the help she so desperately needs. In this particular case, she prepared exactly as instructed for a procedure for which she had waited for years and upon which she placed her final hopes. She researched, obtained the necessary approvals, spent all her savings, and traveled to this clinic multiple times in preparation for the procedure. But an important instruction was omitted from her preparation papers -- overlooked, missed by all involved -- and so she arrived at the clinic only to be told she could not undergo the procedure after all. A mistake -- most likely innocent, as that does happen whenever human beings are involved, but a devastating oversight for the patient.
And your response, Good Doctors? Not compassion or empathy. Not an offer to make things right free of charge. Not even an apology. No, you sent her packing, devoid of hope, out of options, and ready to give up on everything. Can she reschedule after making the changes she needs to make to undergo the procedure? Absolutely. But she cannot gather the necessary funds to return, and she is so emotionally damaged she does not know how to pick up the pieces.
Good Doctors, you simply MUST understand that patients spend months getting referrals, scraping together funds they cannot really afford to spare, and travel long distances to see you. Not only that, but they prepare emotionally. They are frightened, terrified that this procedure will not improve their condition, afraid to hope their symptoms might actually lessen, and yet hopeful against all odds that it will. They FULLY invest and view you as their salvation from the horrors of this cruel illness. Do you not see that the patient before you is begging for someone, anyone, to offer a kind word, a little compassion, a shred of decency?
Now, perhaps it is unfair to saddle you with the entire burden of "hopes and dreams," but it is absolutely appropriate to expect you to comprehend the physical, emotional, and financial burdens your patient bears. It is absolutely appropriate to expect you to behave like a decent, caring human being. And it is absolutely appropriate to expect that if you have made an error, you offer the patient before you a resolution which does not create additional burdens for her.
What you have offered instead, and what I see you offer time and time again, is apathy, a lackluster effort, callous and inhumane treatment, and a rejection of your oath, as I see it.
I say again: If you cannot do any better than this, CLOSE YOUR DOORS and at least spare my people the expense! And I can promise you, from now on, I am going to start advising people to DEMAND REFUNDS! Oh, I know this is radical and likely will not produce the immediate results I seek for these patients, but I can also promise you this...
If patients begin standing up and fighting this sort of atrocity and injustice, it WILL eventually turn the tables in our favor. And in the meantime, you will be forced to respond and deliver an adequate explanation as to why this sort of reparation cannot be made. Make no mistake: patients share information. Your reputation is not flawless and is plummeting quickly.
YOU SHOULD BE ASHAMED!


Wednesday, January 3, 2018

MUCH ADO ABOUT DOM

*Note: I am just a patient, a Gastroparesis patient searching for answers for a community which desperately needs attention, and this is just a copy of my Facebook post.  My apologies if the following seems harsh or overly-aggressive, but my people are suffering, and the status quo is simply not going to cut it.  Someone must speak out for radical change, and if not me, then who?  Please, if I am wrong, offer clarity.  Correct me and I will pass along the proper information.

One further comment -- a personal story really.  My former GI, a motility specialist, prescribed Domperidone and instructed me to obtain it through a pharmacy in Canada or New Zealand.  This physician actually handed me a prescription, along with printed information citing the pharmacies' contact information, and when I objected that this was not the technically legal path, a staff member responded to me: "What difference does it make.  Are you running for political office?"

Is that the atmosphere you had hoped to create?*

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MUCH ADO ABOUT DOM


How is it that our "top" Gastroparesis clinics and motility specialists do not know the proper route for prescribing Domperidone? Good doctors, if I can find the information, you can, too! 

When you advise patients to circumvent the legal process and purchase directly from overseas, you put your patients in the awkward position of choosing between following the FDA regulations or the advice of their doctor (who assumedly has their best interests at heart). Your patients trust that you are following the law and are directing them to legitimate sources of purchase -- and yet you are not. These people are stunned that they have been given misinformation by the very doctors whose advice they are expected to follow.

It would seem, good doctors, you are either uninformed of the FDA guidelines regarding Domperidone (which I find unlikely) or you are blatantly ignoring those guidelines either due to a desire to help your patients obtain the medication they need to survive through simpler (though illegal) routes or because you are unwilling to put forth the time and effort required to jump FDA hoops. I sympathize, but you must understand the consequences and the effect this has on your patients.

Your patients are often completely unaware that obtaining medications outside of the US is illegal and are shocked that you would advise them to pursue such a path. I frequently hear, "My doctor would not tell me to do something illegal. Why would he do that?" In fact, many times, your patients choose to put their faith in you and take your words as the final authority because they believe in you, and, after all, I am just an administrator in an online Gastroparesis support group. What do I know? And so they remain unaware that their medication may be confiscated at the border and that, if this should occur, they will be left without the medication they so desperately need, without an alternative source and adequate time to secure a replacement medication, and without any sort of refund for their purchase.

Beyond that, by breaking their trust in this one particular area, you have broken trust with them completely. How can you now convince them you are honest and upfront about other issues? Have you really researched the treatment option you are offering? Have you fully informed them of all the potential side effects and risks? Have you thought through the needs of your patient in all matter which so deeply affect their well-being? Why would they ever again believe you have told them the whole truth and are acting in their best interests?

I have addressed this Domperidone situation many times with the FDA. I have told them point-blank that people are confused as to why their doctors would give them misinformation and direct them to violate the law and that I am confused as to why this is allowed to continue. Their response to me, while sympathetic, has been that it is "disappointing" to hear that doctors are handing out such advice (and that they should not be) but that the FDA is not the body of enforcement. In other words, the FDA lays down the law but has little power in what happens after that. As I see it, the FDA has washed their hands of responsibility as have physicians.

Now, I do not like the FDA regulations. As a matter of fact, I detest them. But we have them. And if we are not going to do away with them anytime soon, then we need to find a way to help patients legally obtain their life-saving Domperidone. There is a process in place, and I am guessing most of the players (with the exception of patients) know the details of this process. Why are we playing games that ultimately harm the patient? While the powers that be "duke it out," my people suffer. Get on board with the process or change it.

And I say to you, good doctors, please stop placing your patients in a position where they must break the law to stay alive. It is UNACCEPTABLE! You know the proper route so advise your patients accordingly and put forth the necessary effort to help them obtain their medication. Cumbersome and time-consuming? Yes. But you have a duty to do what is best for those you serve. Take it up with the regulators, and, in the meantime, do what you must do to help your patients legally obtain Domperidone.

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For all who are interested, this is the post I generally share in the group. If I am the one who is misinformed, please, by all means, give me clarity...

Regarding DOMPERIDONE...

I am going to post the information (below) I post almost every time this medication comes up. I realize some of you dispute this. All I can tell you is that I have contacted the FDA 7 times now (yes, 7!), and this is what they have repeatedly told me. I have explained to them that I admin a group of more than 17,000 and, so, it is imperative I deliver accurate information, and they have assured me this is accurate.

I also realize doctors are not telling you this and are not prescribing in this manner. Again, all I can say is that, according to the FDA, they should be. It puts the patient in a very awkward position when the doctor is telling him/her one thing and an admin in a Facebook group somewhere is saying another. I have raised this issue with the FDA on numerous occasions, and their only response to me is that they are not responsible for oversight and execution but that doctors should NOT be operating in this manner.

Further, I know most of you obtain your Dom in ways other than the FDA's IND program. I make no attempt to direct your behavior; nor do I pass judgment on it. I clearly understand all the reasons for this. (In fact, personally, I detest the FDA regulations and fight every day for them to be changed.) But my goal is ALWAYS to provide the legal, most accurate, updated information possible, and so I post what I have been told to be correct by the very body which regulates all drugs in the US. And, in addition, I do not wish to see any group members in a situation where their medication has been confiscated and they have no recourse. I know many of you have ordered overseas (or from compounding pharmacies) for years with no issues, but I also know the FDA has begun cracking down on these practices rather severely lately. This can and HAS happened to members of this group.

If you doubt this information, I encourage you to see the FDA packet at https://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/InvestigationalNewDrugINDApplication/UCM520728.pdf or to call the FDA directly at 1-888-463-6332. I do not get paid to be their spokesperson, and I am certain they are tired of hearing from me.

So, here is the most up-to-date, accurate legal information I have. I will not engage in argument over this. You are free to believe as you wish. This is the best I can do. If you dispute it, please refrain from commenting; rather, please contact the FDA directly.

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According to the FDA, there is only one pharmacy (inside or outside the US) whereby patients may legally obtain Domperidone: Dougherty's Pharmacy in Dallas, Texas. You can find Dougherty's on the web at http://www.doughertys.com/ or reach them via telephone at (214) 373-5300. The FDA has stressed that this is the ONLY legal method for obtaining Domperidone available to US residents.

It is a common misconception (even among doctors) that Domperidone may legally be obtained outside the US, but this is not the case. US residents seeking to obtain Domperidone outside the US technically do so in violation of regulations and run the risk of having their Domperidone confiscated at the border. This can and has occurred. In this case, the patient does not receive his/her Domperidone, nor does s/he receive reimbursement for the order.

It is also a common misconception that Domperidone may be obtained through compound pharmacies in the US. Again, this is a violation of FDA regulations. Compounding pharmacies are prohibited from making and distributing Domperidone and do so at risk of being fined. The FDA fines these pharmacies and orders them to cease production/distribution once they have been made aware. Many patients have found that local compounding pharmacies which once filled/refilled their prescriptions for Domperidone have now been banned from this practice. When this happens, the patient is left with no recourse and no access to the medication.

Here is a link to the FDA's website regarding how to obtain Domperidone: https://www.fda.gov/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/InvestigationalNewDrugINDApplication/ucm368736.htm

Their website instructs, in part, "'Patients 12 years of age and older with certain gastrointestinal (GI) conditions may be able to receive treatment with Domperidone through an expanded access investigational new drug application (IND). These conditions include gastroesophageal reflux disease with upper GI symptoms, gastroparesis, and chronic constipation. Patients who are eligible to receive Domperidone have generally failed standard therapies. Expanded access INDs facilitate access to investigational drugs (such as Domperidone) for patients with serious diseases or conditions for which there is no comparable or satisfactory alternative therapy to diagnose, monitor, or treat the patient’s disease or condition. In addition to other applicable requirements, an IND must be in effect prior to the importation, interstate shipment, and administration of Domperidone."

*Please note that we seek to provide you with the most accurate and up-to-date information possible, but we cannot and will not try to direct your behavior. Your choices are your own, and we make no attempt to control them. If you have any further questions, we would advise you to call the FDA directly at 1-888-463-6332.*