Tuesday, January 15, 2019

Self-Respect

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

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

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

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




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Monday, December 3, 2018

ARE YOU LISTENING?



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

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

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

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

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

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

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

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

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

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

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Sunday, December 2, 2018

BUT A WHISPER

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

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

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

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

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

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

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

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


Wednesday, October 17, 2018

The Fall

STRENGTH IS FOUND IN STRUGGLE

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

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

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

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


PERSEVERANCE AND DETERMINATION ARE FOUND IN FAILURE

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

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

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

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

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


MOTIVATION AND WILLPOWER RESULT FROM WANT

If you have never known hunger or deprivation...

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

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

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

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


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


Saturday, October 6, 2018

Taken by the Wind

I had a dream last night.  I was sauntering through sunny fields, cradling a box filled with all the jewelry I have collected and held so dear over the years – priceless pieces, though only in my estimation, I am sure.  It was a glorious day, peaceful and calm, and I was content to stroll leisurely, without a care in the world.  I was happy, oblivious to the storm which was brewing.

Then, in an instant, the sky darkened, and the wind howled, the force of it propelling me forward, causing me to stumble.  The tempest came from nowhere, disrupting my peace, catching me off guard, and frightening me with its intensity.  I was thrown off balance and my box of precious treasures emptied itself into the swirling gale.  I cried out, clutched tighter to my prized possessions, longing to hold on, but to no avail.  The contents were caught up in the whirlwind, snatched from my grasp, my attempts futile.

When the winds died down, I surveyed the aftermath and ran frantically through the fields in search of my belongings.  They were scattered about, some in large inaccessible pools of water, some embedded into the ground so deeply they refused to release, and many nowhere to be seen at all, seemingly gone forever.  I collapsed to the ground and wept over my loss, but after a time, I pulled myself up and went to gather any articles which might be left. 

One by one, they appeared to me:

… a necklace with a raven, black as midnight, proud and strong – a representation of logic, cleverness, sharp-thinking, and intelligence – a meaningful favorite of mine.  It was dusty, covered in film, and, though I tried my best to wipe it clean, the coating remained. I confirmed the damage and dropped it in my box.

… a tiny pin, a small bunny, given to me as a child by a friend, holding little monetary value but a wealth of sentiment, a reminder of my untroubled youthful days.  It was mangled, bent, beyond repair.  I grieved the loss but returned it to my box.

… my high school class ring, which I once esteemed and swore to never remove, lay in the mud, scratched, and emptied of its stone.  I ran my fingers over the hole, accepted the regret, and placed it in my box.

… my wedding ring, a cherished symbol of my eternal commitment to another who loves me as deeply as I love him.  It was dented, misshapen, a perfect circle no more.  I clenched it tightly in my hands, caressed it, uttered silent appreciation its ends were still joined, and gently placed it in my box.

… a beaded bracelet, dangling a spoon, handmade by my daughter, whom I value above all, as a tribute of her adoration and a recognition of my frailties.  It was tarnished and worn, but as I gazed upon its new patina, it somehow seemed more charming than ever before.  I kissed it lightly, full of gratitude, and added it to my box.


The damage was done – my collection incomplete, imperfect.  I wept bitterly over my forfeiture and mourned that which would never again be whole. But I acknowledged the remnants as well, thankful I had not lost all, and as I slowly lifted the box and sifted through my remaining trinkets, I noticed a small chest at the bottom, one I had until now overlooked.  It had not been tossed to the wind with the others but had stayed safely tucked away through the storm.  As I marveled at the thought, I opened its lid, and revealed its contents: encased in glass – a present bestowed upon me by my youngest brother when he was a small child, relegated to the bottom, covered by the grander jewels for so many years – a tiny mustard seed… my hope, my faith, my future.  As the message sank in, tears of gratitude flowed.


Monday, September 10, 2018

THE BURDEN OF GUILT

There is a false presumption among some that the chronically ill do nothing more than spend their days in bed, wailing in agony, and, if those of us with chronic illness are ever witnessed enjoying a rare good moment, it is further presumed by these misguided souls that we “must not be that sick” or that we have somehow been instantly and magically cured.  Unfortunately, because of this subtle pressure (intended or not) to perpetually appear and act ill, lest we not be taken in earnest, many in the chronic illness community conclude we must never allow others to see us in a lighthearted, pleasant moment.  We question in our own minds whether we can indeed be ill and have relatively good times and feel incredible guilt over any enjoyment.  We doubt ourselves and often feel compelled to appear in a constant state of agony, ceding to those who judge us as inventing or exaggerating our condition merely because we seek attention, pity, or avoidance of responsibilities.  We make the mistake of believing we must sacrifice the good times and speak only of our misery so that others will take our illness seriously.  

Much of the problem stems from a misunderstanding of “chronic” illness.  To be chronically ill does not necessarily mean that every moment of every day we suffer.  Unfortunately, some do, but others experience intermittent symptoms and/or symptoms which vary in intensity from mild to quite severe.  Chronic illness can be unpredictable – disabling one day and bearable the next, stable for a spell and beyond control, even life-threatening, at other times.  We must take advantage of the fleeting moments in which symptoms are minimal to have any sort of decent life.

In addition, even those of us who do have constant symptoms have often become masters of disguise and have learned to mask our symptoms for the benefit of others.  We have become accustomed to pushing our pain to the back of our minds so that we can participate, if only briefly, in everyday “normal” life.  What the world sees is what we allow it to see, and our private moments of pain and anguish remain secret.  We are ill, but we hide it well. 

The impact of an illness on one’s life should not be judged by a single moment in time.  Those who doubt and induce guilt would do well to understand that outer appearances often deceive.  The chronically ill need not feel guilty for rare feel-good moments nor for clinging to their desire for normalcy.  I leave you with the following explanation of sorts, thoughts from my own life which has been deeply impacted by Gastroparesis, a life-altering digestive motility disorder which has robbed me not only of my ability to eat but also of any semblance of “normal,” in the hope you will truly “see” what is often “unseen” and we might finally set aside the judgments and be lifted of our guilty burdens:

It does not mean I am "cured" if
... you see me eating a forbidden food. I am sometimes so hungry and tired of protein drinks that I am willing to cope with nausea and/or vomiting for a moment's pleasure, for a mere morsel of a food I have not tasted in years. I am also likely fully convinced I will die TODAY if I do not find a way to consume more calories, even if doing so results in agony beyond compare.
... you see me donning makeup and a nice outfit, laughing, enjoying a movie, a concert, or my daughter's school play. There are times I am so weary of looking at four walls I could scream. And even though I will pay for this excursion dearly with pain and fatigue, it is worth it just to see a smile on my daughter's face and to know that, for a brief time, we did something "normal" together and I did not disappoint her, as I have a million other times. Please note, my attendance likely means I have gone without food and drink for the last few days, as that is now the only way I can manage to stop the symptoms which otherwise prevent me from attending such outings. And when the event ends, I will most assuredly go a few days more without nutrition, as the exertion 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 or therapy improving my symptoms. Perhaps one of my treatments brings my pain level down from a 9 to a 7 or lessens my nausea. This does not mean I am suddenly able to function at 100% or that I can now fully participate in all normal, pre-diagnosis activities. Further, simply because a therapy helped today, that does not mean it will tomorrow.

... I write an essay, post a meme, record a video, or join a chat. To avoid total isolation, I largely connect online now.  Further, it is the means by which I advocate, and, despite my struggle, I manage to show up, speak up, and fight -- because NOTHING is more important to me than finding a genuine cure.

My good moments are few, and I refuse to feel guilty for taking full advantage of them.  Thank you for your willingness to see past initial appearances and for acknowledging the serious nature of my illness.


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!