MESH INJURY – “Spotlight Symptoms”

Hello Warriors;

Today, I’m starting a blog series called, “MESH INJURY – Spotlight Symptoms.”*

TVMI encounter an alarmingly typical and recurrent problem when advocating for and with mesh-injured patients. It goes something like this:

  1. Mesh-injured patient develops a disturbing symptom.
  2. Mesh-injured patient visits his/her PCP or a specialist to seek diagnosis and treatment.
  3. Physician performs a physical exam, and says something like, “I don’t know what that is,” or I’ve never seen anything like this [symptom].”
  4. Patient is confused and bewildered and asks if there are tests that could be done or another doctor or specialist who would know more about the symptom.
  5. Physician says, “No,” and doesn’t perform any diagnostics to find out the underlying cause of the symptom (environmental cause, disease process, injury, or infectious pathogen).
  6. Physician prescribes medicine to mask or alleviate symptom(s) (e.g. topical creams for rashes, antibiotics for a suspected infection, maybe some other pharmaceutical to control pain or discomfort, or even an invasive or non-invasive form of treatment).
  7. Patient goes home still symptomatic, with no diagnosis, and with one or more pharmaceutical or other treatments to consider, which may or may not work, since the UNDERLYING CAUSE or UNDERLYING PATHOLOGY, which caused the symptom to manifest, was never studied in depth by the treating physician.
  8. Patient goes home and follows pharmaceutical regimen or advice for treatment.
  9. Pharmaceuticals and treatments do not alleviate symptom(s). Symptom(s) continue.
  10. Patient is left untreated and without a next step.

Paternalistic-vs-Patient-CenteredOftentimes a physician will refer to a symptom as “idiopathic,” which in layman’s terms simply means, “Who knows where it came from?” There is a responsible use of this term, but I see it used irresponsibly too often.

Some diseases are generally agreed to be “of idiopathic origin,” because no one in science can definitively identify an underlying cause. In this case, “idiopathic” is often part of the name of the disease or syndrome itself. Some examples are:

  • Idiopathic Thrombocytopenic Purpura (sometimes called Acute or Chronic ITP) is a bleeding disorder, in which a patient has abnormally low blood platelets, and thus their blood does not properly clot.
  • Idiopathic Hemochromatosis – is another bleeding disorder, in which an abnormal and dangerous amount of iron accumulates in the body’s tissues or organs, including the liver and lungs.

Both disorders are life threatening if left untreated. These disorders present with SYMPTOMS, and when doctors invest in diagnostic procedures, these diagnostic procedures, coupled with symptoms, lead them to a diagnosis, which then leads to a treatment or even a cure.

A serious problem arises when physicians use the word “idiopathic” irresponsibly. In all cases, any particular symptom or cluster of symptoms do originate from some cause, from something, from somewhere, and any doctor who does not search for the underlying cause of a symptom is negligent. “I don’t know,” would be a more accurate physician response in this situation, however; “idiopathic” sounds so much more, you know, medical and stuff. Odd or uncommon symptoms can often co-occur, simultaneously with other more salient symptoms, and when viewed together as a whole, the underlying disease process in these cases, can be more obvious, leading to a higher chance of diagnosis, or a more rapid diagnosis, which then leads to the correct treatment, to the best of the physician’s actual knowledge.

Puzzled male shrugging wearing lab coat

But, what if a patient presents with an idiopathic symptom that does not have a common accompanying symptom or cluster of symptoms that is easily recognizable to an average physician? In my personal experience, this situation is when physicians can get a bit lazy with the use of  the term”idiopathic.”

“Of idiopathic origin” is so much more dignified on a patient’s chart than:

“I have no friggin’ idea, but it’s not my problem, so I gave the patient some samples.”

So, has your physician ever told you, “I’ve never seen that symptom,” or “Your symptom seems to be idiopathic and will most likely resolve on its own.”?

If so, I’d love to hear from you.

Have you had the experience I describe above?device-transvaginal-mesh-edit

If you have, what was the symptom?

Did you ever get to the bottom of it?

Did the physician suggest diagnostic testing, or did you ask for such if he/she did not?

Did you find your doctors to be helpful in assisting you as you continued to pursue a cause, or did you find that your doctor quietly excused himself from your care, and left you to find some other doctor who might help?

Tuesday we’ll talk about the first of many symptoms which are commonly seen in mesh-injured patients, but for which doctors often say there is no explanation or that physician seems to have no drive to find an explanation.

With this series of blogs, I hope to highlight some very common symptoms, for which mesh-injured patients are turned away, left with no medical solution to pursue. Let’s use our collective knowledge as a community to help one another and to help those who don’t understand the realities of ongoing mesh injury.

The_Mesh_Warrio_Flower_logo_150x150_thumbnail

*I am not a doctor. This information is for education purposes only and is based on my personal experiences. If you have a symptom, please find a doctor who will help you identify and treat your symptoms.

“A Doctor A Day” William Porter, MD of Charlotte, NC . . . and An Apology

Hello Warriors;

Here is your “Doctor a Day.” You know what to do. Call, email, question. Always question.

William Porter, MD of Novant Health Urogynecology, Charlotte, NC is actively recruiting for the FDA’s 522 prospective cohort study: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

William Porter, MD of Novant Health Urogynecology in Charlotte, NC

William Porter, MD of Novant Health Urogynecology in Charlotte, NC

Novant Health Urogynecology

Charlotte, North Carolina, United States, 28210

Contact: Christine Mackey    704-574-5157

Principal Investigator: William Porter, MD


An Apology . . . .

As I was thinking this weekend, I realized that in sharing each doctor who is actively recruiting for this study that would implant NEW patients with Coloplast’s Restorelle for the repair of POP, I have been remiss in my “Doctor A Day” postings. I have not been doing what is core to my cause. I vowed to provide you with information, but I also promised to PROVIDE YOU WITH HOPE.

In these posts, I have not provided HOPE. For this failure, I ask, “Will you forgive me?”

hope changes everythingI hope you will. This blog is about providing you with helpful information, but it’s also about providing hope, for if we lose hope, then we have surely lost everything.

Science should be a celebration of human endeavor, the indomitable human spirit, and the ability of science, when used for GOOD, to overcome the barriers and burdens of Mother Nature that lead to human suffering and pain.

So, how does our mesh-injured community celebrate science when everywhere we turn, we seem to find another doctor who has minimized our suffering; another researcher with a clear conflict of interest; another underhanded tactic used by a lawyer; another failure of the FDA to protect us; and yet another layer of the onion, peeled back to reveal something even more horrendous?

We celebrate the true scientists among us. They are still out there.

As I’ve been sharing “A Doctor A Day,” a question occurred to me:

“What does it mean to be a ‘TRUE SCIENTIST,’ and when did the twin disciples of science and medicine begin to drift apart in such seemingly different directions?”

I immediately recalled the answer of a new friend, whom I met just recently. A chemist himself, I was truly curious and so asked him, “So, what is the difference between a true chemist and someone who uses chemistry?” I found his answer to be simple yet profound.

“A true chemist does chemistry for the sake of doing chemistry,” he said.

My friend’s answer provoked in me another question that I did not explore at the time.

“Where are our generation’s heroes of science, those men and women who, in their various hyper-intellectual specialities, are currently making history by ‘doing science for the sake of doing science?'”

And why do we now refer to scientists as “researchers?” I don’t think I like that term. At least for me, the word “researcher” carries with it a connotation that an appropriately educated person works for someone or something other than the cause of science itself, maybe even for a company who seeks to pay any given researcher to find the answer that company wants, not the answer that is scientifically valid. That is not “science for the sake of science.” That is “science for the sake of profit.”

Clearly, everyone must earn a living, but somehow the scientists of history did make a living, many times before they were employed at all. They were scientists because they wanted to be.

Maybe scientists became researchers with the advent of today’s modern Corporation, an entity whose highest value is profit.

The Corporation (Click link to view the informative documentary.)Screen Shot 2015-10-27 at 3.55.54 PM

In contrast to “researcher,” the term “scientist” conveys a sense of the noble pursuit of truth, as revealed by science. For me, this word offers more meaning. The imagery I get is one of anticipation, hope and a fidelity to the purity of the scientific method.

Dr. Neil deGrasse Tyson, astrophysicist, cosmologist, author, and science communicator. In 2015 for his "extraordinary role in exciting the public about the wonders of science."

Dr. Neil deGrasse Tyson, astrophysicist, cosmologist, author, and science communicator. In 2015 for his “extraordinary role in exciting the public about the wonders of science.”

I’m thinking we need to borrow from Justin Timberlake’s lyrics here and “bring sexy back” to science and scientists.

Why should our society revere doctors as if they were gods, and not think about from where their earthly powers come, the steady long-suffering pursuit of scientific knowledge by SCIENTISTS?

The lucrative “practice of medicine,” is rooted in the dreams of scientists, the discoverers, the curious among us, those with a deep-seated need to find and find out, those with a “keen sensing search,” as Nikola Tesla has been quoted to say. By this method, we uncover the highest calling to the scientist.

Sir Alexander Fleming in his lab at London University

Sir Alexander Fleming in his lab at London University

History-making scientists of the past brought us life-saving discoveries. Many of you may know the story of Sir Alexander Fleming, who in 1928, discovered the enzyme lysozyme and the antibiotic substance penicillin from the fungus Penicillium notatum. Sir Fleming is quoted as saying,

“One sometimes finds what one is looking for.”

I love that quote. It acknowledges that Sir Fleming had the fortitude of character to know his endeavors might not reveal what he’d hoped, but, alas, that is the nature of science. Science reveals truth – not convenient truth, not truth meant for manipulation, not truth meant be to harm those whom it may benefit. Sir Fleming worked at London University.


Below are two living scientists, studying polypropylene and its effects on humans. They are to be celebrated! With many hundreds of articles published as first author, these men have C.V.s that echo what my chemist-friend said.

These men “do science for the sake of doing science.”

Thank you for chasing protons, mixing potions, and failing to find a convenient truth, but succeeding to find a scientific truth in service of humanity. 

Claudio Birolini MD, PhD, Abdominal Wall and Hernia Repair at the University of São Paulo, School of Medicine

Claudio Birolini
MD, PhD, Abdominal Wall and Hernia Repair at the University of São Paulo, School of Medicine

Dr. Claudio Birolini works for the University of São Paulo, School of Medicine.

Mesh Squamous Cell Carcinoma:

http://www.ncbi.nlm.nih.gov/pubmed/23604537

Authors: Birolini Claudio, Minossi JG, Lima CF, Utiyama EM, Rasslan S.


Dr. Vladimir Iakovlev St. Michael's Hospital, Toronto Implantology, Oncology, Pathology

Dr. Vladimir Iakovlev
St. Michael’s Hospital, Toronto
Implantology, Oncology, Pathology

Dr. Vladimir V. Iakovlev works for St. Michael’s Hospital, Toronto.

Long-term effects from the degradation of polypropylene in vivo: 

http://onlinelibrary.wiley.com/doi/10.1002/jbm.b.33502/abstract

Authors: Vladimir V. Iakovlev, Scott A. Guelcher, and Robert Bendavid

EDUCATE YOUR COMMUNITY ABOUT MESH!

Hello Warriors;

It's time to get out and EDUCATE our communities. The media isn't doing it.

It’s time to get out and EDUCATE our communities. The media isn’t doing it.

Today I’m launching an initiative to educate our communities. Following JnJ’s winning verdict yesterday in Ms. Carol Cavness vs. JnJ’s Prosima mesh, I feel it’s imperative that we unite and take action to educate our communities.

I gathered from the reporting and conversations with our community’s “boots on the ground,” that the jury was confused by legalese and terminology, a practice often deliberately used by defense teams to confuse jurors. I wish I could give you first-handle knowledge, but I was not able to attend the trial. However patient advocates, who were in attendance, told me that on Friday, the jury seemed to understand the specifics they were to deliberate; but by Monday, something had changed. The question sent out of the deliberation room on Monday gives us a hint that the jury was confused about foundational definitions like, “Proximate Cause.” Judge Molberg of the 95th district court in Dallas, Texas, reminded the jury in a written statement:

Judge Ken Molberg

Judge Ken Molberg

Proximate cause means a cause which was a substantial factor in bringing about an injury and without such cause the injury would not have occurred. In order to be a proximate cause, the act or omission complained of must be such that a medical device manufacturing company using ordinary care would have foreseen the injury or some similar injury might reasonably result there from.

There may be more than one proximate cause of an injury.

Ordinary Care means the degree of care a medical device manufacturing company or ordinary prudence would use under same or similar circumstances.

If you have answered either question one or two you should redeliberate using the definition I have given you in the supplemental charge because it is a proper legal definition.  It is the only answer I can give you at this time.”

Many of us can attest to mesh injury by Proximate Cause – again, meaning a substantial factor in bringing about an injury and without such cause the injury would not have occurred. It seems simple to understand that, had Ms. Cavness NOT RECEIVED the JnJ Prosima mesh implant, subsequently she would not have been injured by it.

In defense of the jury, these trials are exceedingly technical in nature, as companies defend each product in relation to other very similar products, in an effort to prove that “this mesh” (in this case, the Prosima mesh) was better than any of JnJ’s predecessor mesh products, or that other, safer solutions for her condition, were not available at the time of her implant. Pore size, tensile strength, laser cut vs. mechanically cut mesh – all of this terminology can be overwhelming to learn about in a 2-week trial, as is required of jurors.

Often, the trial is set on-course to be won by one side or the other during the juror-selection process. Jury selection is a joint effort involving the plaintiff’s counsel, the defense council, and the judge. The stated goal is to select jurors who are unbiased towards either the plaintiff or defense. Unfortunately, this process often results in the selection of jurors who actually have less knowledge or education than the average American about the very concepts that will be discussed during trial. One could easily conclude that the selection of jurors who have less knowledge about concepts to be discussed during trial could be a significant bias in itself – in favor of the defense. I don’t know if that is what happened in this case. I just know that the jury asked a very foundational question well into the deliberation process, which arguably, means they may not have understood other foundational concepts well.

My point is: These trials will continue, and we need to do what we can do – what we are able – to do. WE CAN EDUCATE OUR COMMUNITIES. That is something JnJ is doing every single day through advertising, public relations and directly to patients in exam rooms using implanting physicians, who often are not aware of the severe and permanent nature of adverse events resulting from polypropylene mesh implant.

Screen Shot 2015-10-06 at 10.52.10 AMFor example, I wonder how many implanting physicians know about this recently-published article about polypropylene mesh implant in the Journal of Biomedical Materials Research: 

Degradation of polypropylene in vivo: A microscopic analysis of meshes explanted from patients (August 28, 2015).

Or this research article on implant of permanent polyethylene materials: 

Surface modification by plasma etching impairs early vascularization and tissue incorporation of porous polyethylene (Medpor®) implants (September 2015)

Or this research about characteristics of polypropylene in abdominal repairs using mesh:

The influence of mesh topology in the abdominal wall repair process (June 2015)

#TMWF USB Medical Bracelet - in black

#TMWF USB Medical Bracelet – in black

Do you think your urologist, urogynecologist or ob/gyn is a regular reader of the Journal of Biomedical Materials Research? I suggest you ask him/her, and bring the research with you to your appointment on your #TMWF USB Medical Bracelet. 

Courtesy of Dave deBronkart (@ePatientDave), and his study and subsequent article titled,17 years for new medical practices to be adopted, I learned at #MedX 2015 that widely-accepted research by the scientific community, TAKES AN AVERAGE OF 17 YEARS FOR HALF OF DOCTORS to adopt as a treatment option available to their patients! That is unacceptable. That is, in fact, terrifying news.

Average 17 YEARS from discovery to adoption in practice! We don't have that much time!

Average of 17 YEARS from discovery to adoption for HALF of doctors to adopt in practice! 

We simply don’t have that much time.

We can shorten this timeline by educating ourselves, our families, our friends and our neighbors – and yes, even our physicians. 

You may already be making a huge impact, just by telling your story to another person – while waiting in line for a prescription, or at the grocery store, or maybe while on an airplane, or in the waiting room at your doctor’s office. Keep up the good work! It matters! It really does make a difference.

CASE IN POINT: Last year, I shared my family’s story with a Stanford University employee whose mother-in-law was in the Screen Shot 2015-10-06 at 12.27.03 PMprocess of speaking with doctors about mesh implant. Because of that one conversation, a year later, I met that man’s wife at #MedX 2015. I learned that, because of one conversation, and a daughter’s commitment and courage to educate herself; her mother is today healthy, happy, and MESH FREE! She is exercising and enjoying life at a whole new level. We will never know what the outcome of mesh implant would have been; we just know that education changed the course of one family’s decision. And because of that, their matriarch is not injured, not worried about the other adverse events of mesh implant, not destined to become disabled by polypropylene mesh.

If the media won’t educate the public; and the FDA will not remove this harmful device from the market, then WE MUST EDUCATE OUR FELLOW HUMAN BEINGS until the threshold of pressure causes the media, the FDA and/or the general population to take notice of this predatory behavior by the healthcare industry and device manufactures and the medical atrocity that will come to define a generation of families.

Who’s with me?

The Lake Highlands Advocate Remembers Linda Batiste

Hello Warriors!

Please click through to link to the story on The Advocate’s website. Linda lived in Lake Highlands, and I think it’s wonderful that they have honored her with a story.

Screen Shot 2015-09-09 at 3.13.25 PM“Remembering the Lake Highlands woman who faced down makers of faulty medical device”

by Christina Hughes Babb of the Lake Highlands Advocate in Dallas

Your Warrior,

Aaron

Sunday Reflections: August 8, 2015

I began this blog to educate women and men about the dangers of polypropylene mesh implant.

I began this blog to educate the community at-large about a dangerous medical device that causes preventable suffering, injury and pain.

I began this blog because transvaginal polypropylene mesh injured my mother and changed her life forever.

I began this blog to provide a sense of hope, a deep knowing that, “You are not alone.”

I began this blog to build a community of injured women and men.

I BEGAN THIS BLOG TO DEFEND THE VULNERABLE.

*Photo Credit: Health Council of Canada

*Photo Credit: Health Council of Canada

The more I have researched and written about mesh, the more I have discovered shockingly common truths. As I continue to unravel this proverbial ball of yarn, I have come to believe that the manufacture and implant of mesh is a tragic “symptom” of a much larger problem – a symptom of a much more widespread “disease.”

Suspending, for now, the discussion of failed policies, corporate greed, and complicit doctors; I have come to believe that there is an underlying “disease” which manifests in the profound, life-altering “symptoms” of mesh injury.

This disease is not of the mesh-injured victims. It is the disease of their oppressors.

The Disease is DECEPTION

The Mechanism of Action is OPPORTUNISTIC THEFT

The Motive is PERSONAL PROFIT

The Outcome is PREVENTABLE HARM TO THE VULNERABLE among us.

Ξ

DoNoWrong_AbrahamLincoln

Ξ

WE, without the Chronic Disease of DECEPTION, find ourselves outnumbered by individuals and groups of individuals who work together to DECEIVE us through OPPORTUNISM in order to STEAL from us:

OUR finite LIFE FORCE

OUR finite LIFE TIME

OUR finite ABILITY to PROVIDE FOR OURSELVES

OUR finite PERSONAL ENERGY

OUR sacred FAMILY LIFE

OUR finite WEALTH

OUR God-Given DIGNITY

OUR God-Given HEALTH

OUR God-Given right to BEAR LIFE and to HAVE LIFE

and OUR God-Given right to pursue happiness and live our life’s purpose without the threat of violence

Ξ


These DISEASED DECEIVERS

STEAL from us simply because they can; because we are VULNERABLE;

because we have LESS POWER than they do.

Who are the vulnerable persons in our society, in any society? The answer is as old as time:

  • Children
  • Women
  • The Elderly
  • The Disabled
  • The Poor
  • The Sick
  • The Unborn

This list is not debatable, not subject to political rhetoric, not subject to the debate of intellectuals, theologians, lawmakers or any Supreme Court.

 IT IS FACT. 

Supported by thousands of years of evidence and billions of incidents.

In these relationships, the distribution of power is inherently UNEQUAL.

Ξ


  • Every child is more vulnerable than any adult.

Video: 8-yr-old boy is restrained by handcuffs

“He lifted his eyes and saw the women and the children, and said, “Who are these with you?” So he said, “The children whom God has graciously given your servant.”

– Genesis 33:5

“O Lord, You have heard the desire of the humble;
You will strengthen their heart, You will incline Your ear
To vindicate the orphan and the oppressed,
So that man who is of the earth will no longer cause terror.”

– Psalm 10:17-18


  • Every woman is more vulnerable than most any man. 

rape-1Top 10 Countries With Highest Rape Crime for 2014 (America is number 4 of 10!)

UN Study Looks at High Rate of Rape (National Geographic, 2013)

Delhi rapist says victim shouldn’t have fought back (*BBC Online, 2012)

UN Study: Unite to End Violence Against Women (2011)

“Deliver me, I pray, from the hand of my brother, from the hand of Esau; for I fear him, that he will come and attack me and the mothers with the children.”

– Genesis 32:11

“But the men would not listen to him. So the man seized his concubine and brought her out to them; and they raped her and abused her all night until morning, then let her go at the approach of dawn. As the day began to dawn, the woman came and fell down at the doorway of the man’s house where her master was, until full daylight.”

– Judges 19:24-26


  • Every elder or aging person is vulnerable in the presence of any person, who is more able by youth, health, or a less precarious physical or mental status.

“Elder abuse” can be defined by abuse of someone AS YOUNG AS 50.

“In the U.S. alone, more than half a million reports of abuse against elderly Americans reach authorities every year, and millions more cases go unreported.” (helpguide.org)

Educational Video About Elder Abuse (study.com)

“Honor your father and your mother, that your days may be prolonged in the land which the Lord your God gives you.”

Exodus 20:12


  • Every physically or mentally disabled person is more vulnerable in the presence of any fully able-bodied person.

Video: Social workers caught on camera beating and torturing disabled people in care (2012)

“May he vindicate the afflicted of the people, Save the children of the needy And crush the oppressor.” – Psalm 72:4

“His mouth is full of curses and deceit and oppression;
Under his tongue is mischief and wickedness.
He sits in the lurking places of the villages;
In the hiding places he kills the innocent;
His eyes ]stealthily watch for the unfortunate.
He lurks in a hiding place as a lion in his lair;
He lurks to catch the afflicted;
He catches the afflicted when he draws him into his net.” 

– Psalm 10: 7-9


  • Every man, woman and child living in poverty is more vulnerable to any other man, woman or child who is not living in poverty.
    • Every day can be violent: Slavery, Sex Trafficking, Sexual Violence, Police Brutality, Property Grabbing, Citizens Rights Abuse (*International Justice Mission/ijm.org)

Video: Kumar’s Story

(Courtesy of International Justice Mission)

Help the poor.

Help the poor.

Video: The Locust Effect

(Courtesy of IJM, licensed by Creative Commons)

“For the poor will never cease to be in the land; therefore I command you, saying, ‘You shall freely open your hand to your brother, to your needy and poor in your land.”

– Deuteronomy 15:11

“If you lend money to My people, to the poor among you, you are not to act as a creditor to him; you shall not charge him interest.”

– Exodus 22:25


  • Every person who is sick is vulnerable towards any person – man, woman, or child – who is not sick.

Video: The sick and vulnerable are taken advantage of by caregivers 

“You have seen it, O Lord, do not keep silent;
O Lord, do not be far from me.
Stir up Yourself, and awake to my right
And to my cause, my God and my Lord.
Judge me, O Lord my God, according to Your righteousness,
And do not let them rejoice over me.
Do not let them say in their heart, “Aha, our desire!”
Do not let them say, “We have swallowed him up!”
Let those be ashamed and humiliated altogether who rejoice at my distress;
Let those be clothed with shame and dishonor who magnify themselves over me.” 

– Psalm 35:22-26

In you they have taken bribes to shed blood; you have taken interest and profits, and you have injured your neighbors for gain by oppression, and you have forgotten Me,” declares the Lord God.”

– Ezekiel 22:12


  • Every person in the womb, who is unborn, is vulnerable to every person outside the womb, who had the blessing of being born.

VIDEO: The Journey of Life – GENESIS

“Behold, children are a gift of the Lord, The fruit of the womb is a reward. Like arrows in the hand of a warrior, So are the children of one’s youth. How blessed is the man whose quiver is full of them; They will not be ashamed when they speak with their enemies in the gate.”

Psalm 127: 3-5

“The angel of the Lord said to her further, “Behold, you are with child, And you will bear a son; And you shall call his name Ishmael, Because the Lord has given heed to your affliction.”

– Genesis 16:11


If, by the Grace of God, you are not among the vulnerable; then HELP the vulnerable; RESCUE the sick and; REMEMBER the forgotten; GIVE out of your abundance to those who have none.

I don’t know what your purpose is in this life, but I know for certain that NONE OF US IS HERE TO: OBJECTIFY, TAKE ADVANTAGE OF, EXPLOIT, OR INJURE.

OUR PURPOSE ON EARTH IS TO LOVE, SERVE, AND HONOR OUR

Children, Women, Elderly, Disabled, Poor, Sick, and Unborn.

“He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’”

– Matthew 25:45


Have you ever been “shoulded on?”

Have you ever been the recipient of a well-intentioned comment like, “You should just…. (take a walk, meditate, pray, take antidepressants) and then you’ll feel better?” The well-intentioned person is usually speaking from some form of personal experience, probably not a personal experience with chronic pain.

I call that getting “shoulded on.”

With any chronic illness or injury, including mesh injury, it’s just not that simple. If the suffering person could do this “something” that he or she “should do,” it’s likely that person has already been there, done that. And it’s likely whatever “it” is didn’t work. Sometimes, these well-intentioned “you shoulds” make the chronically ill feel a sense of shame and failure.

A common and natural reaction I’ve observed in response is:

“Well, don’t you realize that I have tried EVERYTHING, and if it were that simple, I would be doing what you say I SHOULD do, and I would feel better, and of course, I’d keep doing the very thing you’re suggesting I SHOULD DO because it would work!”

Again, well-intentioned suggestions are just that, but most people would be surprised at the lengths the chronically ill have already gone to, to remedy the pain and loss their condition brings.

Most people who suffer with a chronic, debilitating condition live life day by day, or often, hour by hour, minute by minute or second to second, struggling and coping.

In the reality of chronic illness, when asked, “How are you doing today?” many sufferers shudder at the thought of what response you might be expecting, and the only honest answer is, “I have good days and bad days.”

So on the bad days, here are five things I do for myself and with those I love. I don’t think you should try them, but if you want to, you can.

A bee hive! A real live bee hive!

A bee hive! A real live bee hive!

5) I look for a distraction/diversion – Chronic is a full-time job. That means pain, fatigue, depression, discomfort and all forms of illness never take leave fully of their victims. Can you imagine having to feel and cope every single minute or every single day? Even a second of distraction is worth any amount of effort. Example: Today, God gave us the good fortune to witness a swarm of honey bees settling down to begin building their comb and hive. What a miraculous diversion. I’ve never seen a swarm of honey bees. It was a delightful distraction.

4) I Learn Something New – about anything other than illness or how to cope with it. Chronic illness narrows our experiences so much that it can sometimes feel like there is nothing more to live for, nothing left to gain from life. A hint of the extravagance, vastness and the majesty of the universe awaits in a single new thought, word, or path. Learning something new can be the springboard for new experiences when we’re well enough to leave the hospital, the bed, or whatever kind of incapacitation with which we suffer.

A new word!

A new word!

It's true; you can't make an old friend. This is my friend of 17 years!

It’s true; you can’t make an old friend. This is my friend of 17 years!

3) I Call a Friend – This idea seems trite, but it isn’t. It works. The trick is to call the right friends. Call someone who loves you, someone who has walked through your journey with you, someone who’s a good listener, someone with empathy. Sometimes chronic illness crowds out the blessings of life. None of us can make an old friend. Someone who’s stuck by you through your illness obviously loves you. Give them the chance to show that love by calling and asking for help through a hard day.

2) I Get Creative – You really don’t have to be Rembrant or Andrea Boccelli to gain joy from artistic endeavors. A pad of art paper, a lap desk, and a set of pastels can go a long way. Science has proven that changing up the way we express our emotions can help to reset the mind and our negative thought patterns. Listen to a new type of music with headphones. Draw the colors you hear; draw the shapes you feel; create an image from the music or lyrics. Self expression through art is surprisingly rewarding, and surprisingly unrelated to how good you are at it!

abundance

Thank you Mesh Angel Dany!

Thank you Mesh Angel Dany!

1) I Show Gratitude – Some days are just bad. We all know it. When nothing works to relieve the pain and discomfort of chronic illness, sometimes our best option is to just get through the day the best way we know how. On days like these, I pray. I thank God for the good I have in my life. I try with all my might not to ruminate over what I don’t have or what isn’t fair, how things could or should have been, or the dreaded “why me?” Instead, I thank God for my husband, my mother, my home, my sweet dog cuddled up next to me. If I’m feeling a hint better, I write notes of gratitude to others. I tell them what I love about them and that I’m grateful for their friendship. On some days, all I can muster are spoken words or thoughts, interspersed with “thank you.” In other words, I try to ruminate on joyful thoughts and the blessing I have.

And honestly, some days none of the above works. I still feel horrible. I still can’t get out of bed, but that doesn’t stop me from trying. When I’m at the bottom of the bottom, there is literally only one direction to go, so I move away from the bottom, and the more skills I have to do so, the better.

#HAWMC

Patient Profiles – Word Clouds Reveal Hidden Truths

Today I’m using Word Clouds to rewrite the patient profiles I’ve written for this blog. Word clouds are an excellent resource to create the mind’s eye view of a written piece. I think the following patient profiles are pretty self explanatory.

Mesh is a family illness, and it is painful for the injured person and every one who loves that person.

My family's story: http://tinyurl.com/qdswzps

My family’s story:
http://tinyurl.com/qdswzps

Lady Doe's Story: http://tinyurl.com/o4cj4fx

Lady Doe’s Story:
http://tinyurl.com/o4cj4fx

Heather's Story: http://tinyurl.com/mepppn8

Heather’s Story:
http://tinyurl.com/mepppn8

The Unbearable Likeness of Being a Mesh Angel’s Daughter

The Mesh Warrior BluesOne of my favorite blessings about this, our mesh-injured community that we are slowly building, is that EVERYONE gets validation, not from doctors maybe, but from one another.  Mesh Angels and Warriors, immediate and extended family; we all get to experience that sense of relief when we discover we are not alone.  On that note, please find validation and healing in today’s writing from guest blogger, Tanya, a Mesh Angel’s daughter.  

Thank you for sharing your story. ~ God Bless you all/TMW


Tanya

Tanya

The Unbearable Likeness of Being a Mesh Angel’s Daughter

~ by Tanya

When you grow up in the Midwest, summer evenings mean lightning bugs (my favorite) and June bugs (Holy terrors).  It was always too humid and hot to do anything other than sit inside and play or read in the air conditioning during the day, so my mom would take me and my younger brother and sister for walks nearly every evening. My mom is 5’9” with long legs, and we would have to run to keep up with her. I don’t remember her sitting still unless she was reading the newspaper or reading library books to us.

Lighting Bugs

Lighting Bugs

Sometimes it’s hard to remember now that my mom is that same woman. I honestly don’t know if my brother and sister remember much about Mom when she was more active. When my brother was about 3 years old, he took off running in a parking lot. My mom ran after him and slipped on the gravel. She had to have stitches on her nose – scraped up her hands and knees pretty badly too. That’s how my mom used to be.


“My mother RAN.”


My mother doesn’t run anymore. She barely walks. Until recently, she couldn’t even sit for very long. Thankfully she has found some relief with medication and physical therapy. Her days are still full of pain, but the medication brings it to a tolerable level. She is never completely pain free.

My mother is a grandmother. She longs to lift her grandkids up into her arms and give them hugs and kisses. She wants to wrestle with them and play tickles and make their lunches. She is the kind of adult who never speaks down to kids. She talks to them like they are grown, and they love her for it. My mom considers conversations with children to be equal to great debates on literature and history.

She can barely hold the little ones on her lap now. It causes her too much pain. My brother lives closest to my parents. He has a boy, James. James and my mom are very close. Since he was a baby, he has sat with Mom on her special chair in the living room. They have watched TV shows together or read stories or looked at pictures of James’ cousins Zeke and Evie (my sister’s kids).

My mother, James’ grandmother, struggles to have him over at the house unless Grandpa is there too. She can’t get James a drink of water or a snack, because just walking across the room is an insurmountable task at times. Keeping up with him while playing outside is out of the question.

James and his grandma love each other very much. James’ grandma loves him so much that she doesn’t let him see when she is in agony. Once or twice, a tear has escaped, and James has been very concerned for her. She tries to be careful and tries not to worry him.

“What’s the matter, Grandma?” He comes over and gives her a hug and kiss. That’s what you do when someone you love is hurting.

“Grandma’s tummy hurts. It’s okay,” she tells him.

Grandmother and Grandson - a new relationship.

Grandmother and Grandson – a new relationship.

Since the first of this year, my mother has been to the emergency room more than twenty times, simply because there was just too much pain – intractable pain in medical terms – pain that cannot be eased. Yes, she has seen doctors. Yes, they have given her pain medication. Yes, she has seen specialists. She has had MRIs, CT Scans, Sonograms, Echocardiograms, X-rays, etc.  The pain levels have often been too high for her to bear.

“I don’t see any acute cause for your pain,” the doctors say.

My father has to sit outside the triage room at the ER. It’s hospital procedure – separate the spouse in case there is any abuse the patient wants to disclose. My dad doesn’t get much sleep these days. His wife’s pain wakes them both in the night. She needs help. Dad is the one there to help her. He is her home health care provider, the breadwinner, the housekeeper, maintenance man, etc. They don’t really remember what it means to simply be husband and wife anymore. They just try to get through one day at a time. I worry about my dad as much as my mom.

I moved away from my hometown three and a half years ago. Mom had been gradually experiencing more and more pain and limited mobility for a few years before I left, but it wasn’t debilitating at that point. I visited my parents a couple times a year, each time noticing mom’s worsened state, but still not fully realizing what was happening.

Last February I bought a plane ticket home again, and in the weeks leading up to my trip, I started talking to Mom about the plans for what we would do. She said things like, “Remember, I can’t do all of that.” My dad started sending me text messages saying that Mom was in the ER. “Lots of pain,” the texts read. I began to worry that Mom’s situation had gotten much worse since I had seen her last.

That week last February during my visit is still a complete blur. Days and nights bleed together. There was little sleep. I made pill charts to make sure Mom didn’t overdose on painkillers and anxiety medications. They were prescribed, “As needed,” and she hated taking them. I cooked meals that she didn’t eat – just too much pain. She had no appetite. I didn’t eat much either.

I cried more than I had in a long time. I followed Mom back and forth: from her chair to the bathroom and back; to the bed that we brought downstairs for her. Climbing stairs had become a burden for her. I researched everything I could. On one particular occasion, Mom got so frustrated with my constant research, that she literally took my cell phone out of my hands and told me to, “Give up.” She was struggling to hold on to any hope at all. Don't give up

I left that visit with a broken heart for my mother. I sat in the airport, numb from the experience. I ordered a drink and some food at the bar. I slept like a baby on the plane. My boyfriend picked me up from the airport, and I cried all the way home. He held me, and I wept for my mother. I wept for my father. I wept for my brother and sister and nephews and niece. Our mother, wife, grandmother and friend is still here, but we miss her. She misses herself. The mesh with all its pain, complications and unanswered questions has impacted our relationships with her.

My sister flew home about a month after I was home. She didn’t take her kids. It was for the best; Grandma was in bad shape. We, her family members, have become nurses, doing the kinds of up close and personal things that nurses do – my brother, sister, and father – all of us. I don’t disclose this to embarrass my family, although it most definitely will. I tell you these things because this is the truth of living with a mesh-injured mother. It is the truth.

We have become a family poised to take action. We research. We ask questions. We are the squeaky wheels. We spend a lot of time on the phone with one another planning courses of action regarding doctors, lawyers, health insurance, etc.


“In the midst of it all, my mother reminds me that she is a person, not a project. We must remember that. It is her body. She gets to make decisions.”


My mother is a person. My mother is a person in pain, a person who did what her doctor recommended to fix a problem, and her life changed forever – and not for the better. My mom has a mesh implant, and her health problems started shortly after it was implanted. We have yet to find a doctor who will diagnose the mesh as the culprit and cause of her pain and/or the litany of other symptoms she has developed since the procedure.

It’s highly likely that the rest of my mother’s life will be one that includes pain in all its iterations. Thankfully, she has found a pain management program that has made her pain more manageable, but it is a daily struggle.

My family has a different life than we thought we ever would. We get angry about it sometimes. We get angry that there are so many women struggling in the same ways. My family and I pray and try to be an encouragement, and we give one another grace when one of us just can’t handle the emotional strain of it all. My mom has many times been just as brave for the rest of us as she is for James, our family’s precious next chapter. She sees how upset I get – how upset we all get – about it all.

She’s afraid of worrying me. She called the other day, and no, she didn’t talk about her pain or herself; she actually asked how I was doing.

That is the kind of mother I have. I pray that I will have her for many more years.

I love her very much.

A mother and daughter's heart is inseparable.

A mother and daughter’s heart is inseparable.