SUNDAY REFLECTIONS: When That Rough God Goes Riding

Harper Lee was once asked why she never wrote another book after To Kill A Mockingbird. She said, “I have already said everything I wanted to say.” Poignant, no doubt.

In this same way, another writer and musician said almost everything I’ve ever wanted to say to the pharmaceutical companies, their executives, their lawyers, their consciences (if any of them even has one, that he must be ignoring). . .

In. One. B-side. Song.

Best listened to with headphones, and the words in front of you, not the video, IMHO.

From Van Morrison’s 1997’s album, The Healing Game . . .

“Rough God”

Van Morrison

Oh the mud splattered victims
Have to pay out all along the ancient highway
Torn between half truth and victimisation
Fighting back with counter attacks

It’s when that rough God goes riding
When the rough God goes gliding
And that rough God goes riding
Riding on in

I was flabbergasted by the headlines
People in glasshouses throwing stones
Gaping wounds that will never heal
Now they’re moaning like a dog in a manger

It’s when that rough God goes riding
And that rough God goes gliding
There’ll be nobody hiding
When that rough God goes riding on in

And it’s a matter of survival
When you’re born with your back against the wall
Won’t somebody hand me a Bible
Won’t you give me that number to call

When that rough God goes riding
And then that rough God goes gliding
They’ll be nobody hiding
When that rough God goes riding on in
Riding on in

When that rough God goes riding
When that rough God goes gliding
There’ll be nobody hiding
When that rough God goes riding on in
Riding on in

There’ll be no more heroes
They’ll be reduced to zero
When that rough God goes riding
Riding on in
Riding on in
Riding on in
Riding on in

 

 

 

 

Symptom Spotlight – “Ascites”*

Today’s Spotlight Symptom is:  “Ascites”

Many mesh-injured women and men suffer from this condition, yet it seems to be one of those symptoms that many doctors write off as “idiopathic” when seen in mesh-injured patients. Please refer to yesterday’s blog post to understand how doctors use the term “idiopathic” in a clinical setting.

Click here to learn how to Pronounce Ascites

Definition of Ascites: Ascites is the accumulation of fluid (usually serous fluid which is a pale yellow and clear fluid) that accumulates in the abdominal (peritoneal) cavity. The abdominal cavity is located below the chest cavity, separated from it by the diaphragm. Ascitic fluid can have many sources such as liver disease, cancers, congestive heart failure, or kidney failure. (SOURCE: http://www.medicinenet.com)

Medical-Diagnosis-2-callout-EN1

Below are actual pictures of Ascites in mesh-injured patients. These four women have shared these intimate photos in hopes that their injuries will help YOU, the reader, or another injured person you may know.

THANK YOU TO THESE MESH WARRIORS!

Ascites_Picture_Mesh_Injury

 

“While a tense abdomen filled with fluid is easy to recognize, initially, the amount of ascites fluid may be small and difficult to detect. As the amount of fluid increases, the patient may complain of a fullness or heaviness in the abdomen. It is often the signs of the underlying disease that initially brings the patient to seek medical care.” (SOURCE: emedicinehealth.com)

As I explained in yesterday’s blog, when a patient goes to the doctor with a symptom that doesn’t present in the most common medical context, many doctors do not pursue further understanding about why a common symptom is presenting in an uncommon way.

For example, the most common cause of Ascites is cirrhosis of the liver. So, say a mesh-injured woman presents to her physician with Ascites, but has no history of liver disease or alcoholism, and no cirrhosis of the liver. What happens next; or more appropriately, what should happen next?

The process of diagnosing the underlying cause of any symptom is performed by using the method of differential diagnosis. In the case of Ascites, one other possible explanation for the symptom is:

“Those who have spontaneous bacterial peritonitis (an infection of the peritoneum) develop abdominal pain and fever.” (SOURCE: http://www.emedicinehealth.com/ascites/page3_em.htm)

It is now well known that mesh can cause life-threatening and recurrent infection. So it seems to me that further investigation would be crucial to any patient with mesh who presents with Ascites.

Differential Diagnosis – the determination of which of two or more diseases with similar symptoms is the one from which the patient is suffering, by a systematic comparison and contrasting of the clinical findings.

Physicians are taught to follow these procedures to continue to rule out every cause, until a fotolia_5910589_XSshort list of possible causes remain. Ruling out underlying causes of any symptom(s) is carried out through a sequence of examinations and diagnostic testing.

With this symptom in particular, I am hearing from many women who are sent away by their doctors with some variation of an excuse, claiming ignorance, or at best, simply treating the condition with pharmaceuticals while refusing to perform simple diagnostic procedures and testing that could provide that doctor with more information and eventually to a better form of treatment, or cure ,and the underlying cause of the symptom.

So, when a mesh-injured patient presents with Ascites, and the physician has ruled out the most common cause of this symptom (cirrhosis of the liver), then his training requires that he begin to rule out additional possible causes.

In graph form, the process of ruling out causes for Ascites might look something like this:

ascites

 

Doctors are trained to use the above method with every symptom or illness. It is part of their daily scope of work, so why do I so often hear from women that they go to the ER, to their family physicians, to their OB/Gyns, and to their Urogynecologists with this disturbing symptom only to be told something like this, “I don’t know what this is,” or “I’ve never seen this before.”? The above process for differential diagnosis is relatively simple. Even the diagnostic testing is relatively simple, as noted above.

To find out more about testing used in the diagnosis of suspected Ascites, refer to the below pictures, and click on these links to learn more.

Abdominal Ultrasound

abdominal ultrasound

Diagnostic Paracentesis

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Computed Tomography (CT Scan)

anatomy_of_a_CT_scan

These women describe to their physicians that this symptom is not simply uncomfortable, but it’s PAINFUL. They describe shortness of breath, difficulty breathing, naseau and vomiting, and the obvious limitations in lifestyle and decreased quality of life – not being able to fit into clothing, not being able to lie on their stomachs, pain when sitting, etc. Imagine all the uncomfortable symptoms of being nine months pregnant, except this situation doesn’t end in the birth of a beautiful new family member.

I find it maddening, sickening, detestable, and downright cruel that so many doctors refuse to treat mesh-injured men and women, especially when these patients present with odd or “out of the box” symptoms.

I encourage you to print and use the above graph if you suspect you have this symptom. Bring it to your doctor. Earlier this week, I spoke with a woman who went to her Ob/Gyn with this symptom, and he simply told her there was nothing he could do to help her. What?! She even asked for some of the testing in the above graph, but still the physician refused to help her.

The question we should be asking is “Why?” The action we should be taking is to educate ourselves about our own bodies and what our bodies are trying to communicate to us through symptoms. Our physicians must understand that we know they are refusing treatment, and we know that it’s wrong to do so.

Stay tuned for tomorrow’s “Spotlight Symptom.” I hope this information will help you when you visit your doctor, seeking treatment and a better quality of life.

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*I am not a doctor. This information is for educational purposes, and is based on my own experiences. Seek medical attention for this or any other symptom.

 

 

 

Sunday Reflections from Another Patient

Hello Warriors;

I have the great pleasure to share the thoughts of my friend, who is also a patient, and patient advocate.

Screen Shot 2016-04-10 at 8.21.52 AMMrs. Linda Radach and I met at the USA Patient Advocate Network workshop in D.C. last year, underwritten by the National Center for Health Research and the Patient-Centered Outcomes Research Institute (PCORI). Screen Shot 2016-04-10 at 8.21.37 AM

You know when you have the feeling that you’ve known someone forever, but you’ve only just met? That is the way I feel about Linda. Our friendship took mere hours to bloom, partly, I suspect, because she is a type of fertilizer for the soul.

Linda was injured by a failed hip implant, and she has suffered greatly as a result. Still, though her spirit is weary at times, she leans upon her faith in Christ and the Lord of the Bible for wisdom and strength. She has allowed me to share her faith and source of healing in a poem she wrote, Captured Free.

Scripture inspires her life and her writings. She has offered a collection of her thoughts and expressions of her pain in scripture here: Healing Worship – Lenten Study Notes. As a true believer, she runs further into the wisdom of God, so freely given to all, even in her suffering. I hope her words bring you comfort and serve as a salve for your aching soul. I know the many conversations we’ve had were powerful for me and healed some of the broken pieces in my soul. In the realm of human suffering, we are all alike. We all experience it in different ways, but suffering can bring those who sing, in spite of their trials, together – to make a beautiful noise to the Lord who hears our cries.

Here is a beautiful song to listen to, as you read Linda’s words and meditate on them.

Lord, Hear My Prayer

SongbirdSpectrumWC391

“Captured Free”

 

Songbird sits, quiet and still

No warble or whistle, no song or trill

Once free to fly, with songs soaring high

On the perch where she sits

Her soul wooden and dry

 

The view from her cage – dark and drear

No light or shadow, only shades of fear

Dreams shattered

Heart tattered

Pain has silenced her praise

 

There must be a way to regain her song

But night after night the silence grows long

Freedom and joy – mere memories now

Still, faint though it be, hope wonders how

A melody stirs in the darkness

 

Slowly light dawns upon the small locked cage

Revealing the way known to the wise and the sage

In this new morning she would take a chance

To free her soul and rejoin the dance

Humming the melody of the darkness

 

Imperceptible at first, the cage doors released

Giving flight to her wings as imprisonment ceased.

Tearful, yet growing stronger, her song she raised

Offering up a sacrifice of praise

Giving thanks for the limitations of her life in the cage.

 

By Linda J. L. Radach

November, 2012

 

Look for these beautiful songbirds, and remember the Lord’s word.

He cares for you.

“Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows”. – Luke 12:7

“Even the sparrow has found a home, and the swallow a nest for herself, where she may have her young— a place near your altar, Lord Almighty, my King and my God.” – Psalm 84:3

bird-poster

April Fools

Hello Warriors;

I haven’t written to you in some time. Suffice it to say that the daily demands of life are sometimes overwhelming.

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Anyway, I have missed you, and I’d like to take the liberty, this April Fool’s Day, to remind people about who the real FOOLS are. MESH IS NO JOKE – not the commercials, not the litigation, and certainly not the deeply personal injuries. You all know that, but it’s my hope that our community’s message still presses into new audiences, into the mainstream discussion among media, and around the proverbial water cooler at work. Any person with even the faintest bit of familiarity about the realities and mind-blowing chain of harm in the conception, manufacture, and implant of mesh knows the physical damage that mesh causes, and the destruction and havoc it wreaks upon the physical body.

But what about ALL THE REST. The SO MUCH MORE. The WHEN WILL IT STOP PART?

What about the reality that still exists when the commercial ends, after the trial or settlement, after all the surgeries than can be done have been done, and all the doctors who can be consulted, have been consulted? Does the general public really understand what’s left of us after all of that unspeakable harm?

I think not.

MeshEndsNowInjury by mesh is a physically and sexually violent assault. And, it’s an assault that reoccurs, for some women and men; it’s a daily assault, the experience of being reinjured time and again. As with any assault, the injury is not limited to a physical injury.

Mesh is a violent tormentor. It assaults the emotions, the intellect, the heart, the soul, and marches right on to damage families, friendships, jobs, hobbies, and pretty much anything of value in life. It’s damned ruthless and relentless.

Mesh is a cruel teacher. In our daily living and experiences with mesh, we learn who to trust, and who not to trust. Through a mesh-colored-lens, the true character of the people in our lives is revealed. Those we thought to be stalwarts of strength crumble; those we thought to be our closest comforters, suddenly vanish; those we thought were “in our corner” have turned against us; those whom we, ourselves, have helped through life’s harsh realities, are somehow unable or unwilling to reciprocate when the roles are reversed, and this time, we have drawn the short straw.

This experience is paradoxical and surreal.

We also discover those we thought watched us struggle in silence now appear as angels of help and hope. Those we thought to be meek are now our greatest advocates. Those we would not have met, but for this mesh, and the family of chance borne from our shared experience in its grips, have become our most trusted confidants. And in some ways, our family of chance has now become our family of choice.

Mesh is a crucible. By severe test and trial, unlikely heroes emerge, as do inconceivable villains. This improbable combination of elements and characters has become a white hot furnace, from which only the purest substance of the soul emerges. A soul, refined and laid bare by force, leaves only a remnant of its most fundamental quality.

From the crucible that is Mesh Hell can come all kinds of souls. Which words you choose to describe the phenomenon matters not. Anyway you slice it, you’ll find three

An Overwhelming Beauty. . . a soul who rises or has been risen above the hate somehow;

A Tepid Vapidity. . . a soul who’s lost its way in this life, or

A Destructive Odiom, a soul who can’t resist the siren call temporary relief that a vengeful mindset can provide. So shiny is the lure, we forget its hidden hook.

None of us had a choice as to how mesh harmed us and our loved ones, but we each do have the choice to emerge from this pile of ashes as a BEAUTY, though wounded; as VAPID AND NUMB; or seeking to repay evil for evil, falling so far that we, ourselves, have become MALICIOUS.

What will be left of us after the commercials and the trials are long forgotten? What will we have become? It is a difficult question to consider. It is an extremely painful question to consider at all.

We have every reason to be angry to our very core; to lash out in our pain. We have every reason to seek recompense, restitution and AN APOLOGY; every reason to expect those people to pay up, shut up, and go away. We have every rightful reason to hold disdain for these oppressors; the fat-cats who wouldn’t let their wives or daughters go near a mesh product, while they stand in court and so eloquently sing praises to the most holy mesh or stand in a surgery room and implant this ruinous tupperware into another human being, despite knowing there is even the slightest chance of harm. We and our loved ones are permanently injured. We have the right and the choice to be permanently bitter, furious, and set our minds on revenge for the rest of our lives. Who would blame us? Who could? No one.

BUT

There is a different option.

What if we chose – no what if we determined to set our thoughts and actions towards living our lives with joy despite the pain, chose to recognize the beautiful, chose to accept whatever grace, help, and mercy comes our way. What if we chose to be grateful that it isn’t worse; grateful to have had mesh removal; grateful even to have the knowledge that this implant is what has harmed our loved ones and our families? What if we chose to be beacons of hope, and a representation of the indomitable human spirit? What if we chose to joyfully seek occasion to meet others when at all possible, and share our stories to save someone else from harm? What if we became a generation of betrayed and harmed families who refuse to be forgotten; who refuse to go quietly into the night, who refuse to allow our voices to be silenced amidst the clanging noise of the lies, the money, the greed, the inhumane that surrounds us.

And what if we did all these things just to spite them, by reminding them that we are still here.

We are not going anywhere.

We wake up each morning with a clear conscience instead of a Mercedes.

What if our captors are the reason some of us will become great heroes and helpers; the voices that will stop the harm of future generations. What if our joy becomes the bane of their existence, while their baleful existence becomes the instrument of their own demise?

Who would be the fools then?

 

It really isn’t so unrealistic, unattainable, or impossible – not if we all believe, with an unshakeable knowing that we are here on this planet, not to be ravished, destroyed, and wasted; but to be uplifted and to exemplify the best of humanity, the best of human souls. What if we are the next GREATEST GENERATION, right now? The Greatest Generation didn’t know they would be remembered as such. They simply chose with their wills, with their hearts, and with their minds – they chose to do the right thing, and under tremendous adversity. We remember them for their qualities or fortitude, courage, bravery, persistence, sacrifice, frugality, self respect; love of country and family ; and a deep sense of pride in doing right. We cherish and revere them, and we wish there were more people like them. We mourn that so few remain. We mourn that our values are dying out with every death of one great soul, counted among America’s Greatest Generation.

What if we ARE the people like them. Mesh might be a new kind of evil to enter into the history of the world, but adversity and triumph over evil are as old as time itself.

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Dr. Raz Debates: To Mesh or Not to Mesh?

Shlomo Raz, MD

Shlomo Raz, MD

Dr. Shlomo Raz, known wide and far by our Mesh Warrior community as the preeminent surgeon for full transvaginal mesh excision, debates a fellow urogynecological surgeon at the 2015 American Urological Association Annual Meeting, held in New Orleans in May of this year.

Below is the video of the debate.

 

What do YOU think about the merits of each position?

2015 Debate: Surgery for Stress Incontinence – With vs. Without Mesh

Screen Shot 2015-12-09 at 11.17.50 AM

Dr. Raz Debates at the AUA’s 2015 Annual Meeting in New Orleans, taking the position that mesh SHOULD NOT be used to treat SUI.

*WARNING – There is graphic medical content including live-action film of genitalia and surgical interventions.

#TMWF – OUR BIG FAT GEEK GIVEAWAY!

stanford_medx_logo_V4_finalIt’s no surprise that patient data was a big topic at Stanford #MedX this year, especially since the Affordable Care Act (ACA) mandated implementation of the Electronic Medical Records (EMR) system, sometimes also called Electronic Health Records (EHR), and the deadline for implementation was in September for most healthcare entities.

THE BAD NEWS:

No one that I came into contact with at the conference posed a solution, even with the EMR mandate, for sharing information seamlessly between physicians and with patients, though most everyone agreed: the EMR is not the be-all, end-all solution.

Many states have laws which grant ownership of your personal health data to the doctor or institution. Conversely, many states have no laws at all about who owns your medical records. Check out the map below, and read this blog post for more info: Stanford #MedX #WrapUp 2015 – Three Truths, No Lie

  • If you live in a grey state, there are no legal grounds for facilities to keep your medical records from you.
  • If you live in a dark blue, green or yellow state; Do not fret. Just because your doctor or institution owns your data, doesn’t mean that YOU DON’T ALSO HAVE THE RIGHT TO OWN A COPY OF YOUR MEDICAL RECORDS.
  • If you live in New Hampshire, count your blessings, and call yourself lucky to be among the 1.3 million Americans under a state law that mandates your personal ownership of all medical records, specifically and outright – no questions asked.
Do you own your OWN medical data?

Do you own your OWN medical data?

THE GOOD NEWS!

I am excited to announce that #TMWF is donating ONE HUNDRED AND FIFTY (150) #TMWF Medical USB Bracelets to patients injured by mesh!

**** Woohoo! Yippee! ****

PLEASE COMPLETE THE FORM AT THE END OF THIS POST TO RECEIVE YOUR FREE TMWF USB MEDICAL RECORDS BRACELET. 
We will be shipping over the next two weeks! *Due to the limited quantity, we will donate on a first-come, first-served basis. Limit one bracelet per household please. 

↓ Look how pretty! ↓

Your_8GIG_Medical_USB_Bracelet

“Necessity is the mother of invention.” ~ Plato

How do we, as patients, solve our own problems in the face of an incompetent healthcare system? WE ADAPT AND SOLVE.

Waaaayyyy back when – in 2011 

Binders - Much too binding!

Binders – Much too binding! 

I began carrying my mother’s medical records in 3-ring binders. I quickly learned that interoperability and sharing between doctors was practically non-existent. As the records grew, so did those binders, and the solution quickly became unsustainable, as I lugged huge binders around from doctor to doctor, hospital to hospital.

So I adapted.

I began scanning in documents and images, recordings and notes – keeping all records on my computer to access at a moment’s notice if a doctor needed information that had not been shared by another provider on my mom’s care team. Housing the data on my computer was a great back-up plan, but during the standard 15-minute doctor’s visit, I was unable to access and, more importantly, TRANSFER information to the doctor as quickly as was needed.

So, I adapted again – circa 2012.

Plastic & thin metal casing made for an unreliable USB stick.

Plastic & thin metal casing made for an unreliable USB stick.

I began carrying an encrypted USB stick on my keychain including all Mom’s medical data, with the back-up on my computer and paper print-outs in my binder filing system. All that together was a great solution for a while, but the plastic and thin-metal casings on my inexpensive USBs simply did not hold up to the wear and tear of nearly constant usage and travel. The USBs wore out quickly, and I was in constant fear that the data was in danger of becoming corrupted.

So I adapted again – circa 2013.

Aha! This USB works! Sturdy & Stylish. Nearly two years old, and still going strong!

Aha! This USB works! Sturdy, stylish & still going strong after 2 years of wear!

I decided I needed to literally wear my mother’s medical records somehow. At first I made my own sort-of prototype, bracelet-USB-thingy-ma-bob, and while it worked, my prototype didn’t hold up too well. I began searching for a reliable, wearable USB, which was a challenge, but I found what has been the best answer yet: my sturdy & stylish, stainless steel & leather 8 Gig USB bracelet. I wear it daily, and it has held up for just shy of two years now. I have secured it with encryption software, so in case of loss or theft, the USB is useless to anyone else, and my mother’s personal information is still safe.

Now I wear two bracelets – one for Mom and one with my own data.

The #TMWF Yes M.A.M. Market Medical USB Bracelet - in black

The #TMWF Yes M.A.M. Market Medical USB Bracelet – in black

If we’ve run out of freebie bracelets before you have the chance to sign-up, you can buy the bracelet that I use from #TMWF’s Yes M.A.M Market. The bracelet from the market is a slightly different design (black, with different double-strand design instead of a wrap-around design) but it is just as stylish, sturdy, and useful!

*A word of advice – Some doctors have received my medical USB with great enthusiasm and gratitude. Other doctors have told me it’s illegal or against policy for me to share information with them via the USB. In all cases when I was told that, it was untrue. If your doctor is resistant to receiving information you provide him/her via the #TMWF Medical USB Bracelet, or in any other form, I suggest trying the following steps to ADAPT and SOLVE.

  • Offer suggestions
    • “Doctor, if you can’t download the information from my USB to any computer in your office, I’d like to email the information to you. What is your email address?”
    • “Is there an assistant with whom I can work to transfer the information from this USB to your office computer(s)?”
    • Bring hard-copy, paper print-outs of the most important information on your USB to each appointment. Insist that the paperwork be added to your medical record.
    • Upon leaving, ask for a copy of the doctor’s notes that day and/or a copy of any imaging or lab test results. If they say no at first, push the issue a bit. After all, it’s data from YOUR body.
    • If you don’t have a scanner at home or work that you can use; take your paperwork, images, and lab results to a FedEx-Kinko’s or similar business that can scan your records and place them on your USB. Of course, using these services will require payment, but you may find a helpful employee or sympathetic manager who is willing to lower the cost.
    • Ask for help along each step of the way. Tell the doctor/hospital or business that these scans are necessary for you to keep life-saving medical records up-to-date and/or that you are on a fixed income or Medicaid/Medicare. It never hurts to ask!

ORDER YOUR BRACELET BY COMPLETING THE BELOW FORM

#TMWF/TMW will NEVER share your information with anyone for any reason.

Sunday Reflections – October 4: Fake Plastic Trees

Almost invariably, I wake up each morning with some song rolling around in my mind. This morning I woke up with Radiohead’sFake Plastic Trees,” in full-on live streaming mode.

This band and song was one of my favorites, back in the day, when pop culture began to be defined by the “Grunge” movement: flannel shirts, ripped jeans and broody-moody song lyrics as musicians returned to a rock sound with their grungy, gritty, back-to-the-roots of rock-n-roll aspirations. Bands like Pearl Jam, The Smashing Pumpkins, Nirvana and Metallica were the sounds that defined my young adult years, a time when most all of us – no matter the generation – begin to relate to music more deeply as we individuate and become more of the person we will be as an adult.

Fake Plastic Trees,” got me to thinking about plastic in general and when we, as a society, decided it was the wonder substance, to be used for everything under the sun. Plastic, as we obviously know, has real limitations. Certainly VERY REAL to all of us in the mesh community. How did our society go from deciding that glass Gatorade bottles were the enemy of our children’s basketball and volleyball courts (OH MY GOSH! The bottle could possibly break, and then could possibly hurt someone!) to “Plastic – It’s the NEW glass!” Where is the societal OUTRAGE over the ways plastic has hurt, maimed, killed, and sickened so many individual people?

The media whipped everyone into a frenzy several years ago over the ubiquitous use of BPA (Bisphenol A), just ONE type of plastic. The pace has slowed, but the use of BPA is still a hot news topic.

BPAbpa_freeRecent Studies State Chemical In Plastic Liquid Containers Contain Tox

“We can’t have our water bottles made with BPA,” they say. “Don’t store food inside BPA-containing tupperware, and don’t you dare commit the unpardonable sin of heating your food in the microwave in these plastic containers with BPA! Down, down with BPA! Kill the enemy!”

Oh, and, by the way, “SAVE THE PLANET! BPA is going to KILL THE PLANET!”

Hysteria ensued, and early-adopting consumers decided they would not go near a plastic product made with a single molecule of BPA. We began to see the marketers respond – labels on everything – “BPA-Free!” they said. We didn’t know what BPA was; we just knew it was REALLY, REALLY BAD, and it was becoming socially unacceptable to be seen in public – with our kids in tow – carrying the ostracizing, made in China, “Non-BPA free” reusable sports bottles.

The social pressure of early adopters changed the social norm of what was the acceptable use of this plastic and what was not.

Now, most every food-grade plastic is “BPA-free,” and the “theys” tell us, THIS PLASTIC (every other plastic polymer, especially Plastic #1, PET or Polyethylene terephthalate) is safe for your baby’s sippy cup, safe for you to drink from during your “Power Yoga” class, safe for the lining of metal cans that house baked beens, baby food and beauty products. But the truth is that BPA and PET are simply two canaries in the coal mine, warning us that plastic isn’t the world’s greatest invention since sliced bread.

Notice in the chart below, BPA is plastic #7 – the most dangerous of plastics – which can interrupt our endocrine systems and attack our balance of hormones, causing all manner of discomfort and illness. Since I found this chart, (unknown source) I’ve seen #9 inside the friendly triangle shape – a black plastic container holding cupcakes I bought. Now, all plastics must be labeled with its commensurate triangular icon and grade/number of plastic. No, the familiar, triangular arrow DOES NOT mean “recyclable.” Usually imprinted on the bottom of any given container, this triangular symbol tells you what kind of plastic you are recycling, eating from, or what kind of plastic is implanted in your body. I bet you didn’t get to turn over the mesh product placed in your body to look at which kind of plastic was being used, or even THAT plastic was being used in your “safe” medical implant at all.

The mesh community’s ENEMY #1 is Plastic #5 – Polypropylene.

Johnson and Johnson, Boston Scientific, Endo/AMS and other medical device manufactures put Plastic #5 – Polypropylene – in the bodies of millions of people for the repair of SUI, POP and/or hernia.

Polypropylene #5 is just two meager steps away from the source of our nationwide outrage – BPA, #7.

BPA - Just the worst off the worst.

BPA – Just the worst of the worst.

HEAR THIS: The PLANET will survive plastic; it is the human beings who live on the planet who will not.

CAN WE UNITE UNDER THAT CREDO?

Can we join forces under a shared goal – environmentalists, politicos of the anti-oil sort, advocates for quality in consumer products, and advocates for quality in medical-grade materials? The oceans and the Earth will adapt and survive. Apparently, it’s the most powerful human institutions that will not adapt, and the humans under their tyranny who will not survive. But in understanding how the social environment and its BPA frenzy CHANGED the socially accepted uses of BPA, we have a blueprint.

We have a more common shared enemy: the misuse of plastic.

All plastic is a petrochemical waste product that became a gold mine for all types of industry.

From toy makers – Remember wooden toys? What was so wrong with them?

To the manufacturers of food storage containers – Remember RUBBERmaid containers and Ball Jars? Rubber and glass are natural substances.

To manufacturers of food and beverage – Remember when Gatorade bottles were glass?

To clothing manufacturers – Our clothing is now largely made from plastic polymers or polymer blends (polyester, acetate, nylon and spandex being some of the most well known). Cotton, wool and denim were working fine, weren’t they? Try to find a pair of pure-denim jeans these days. Good luck, and bring your savings account.

Plastic works well for some uses. After all, it’s durable. It’ll be here for tens of thousands of years according to scientists. Plastic is convenient, disposable and inexpensive, right?

Or is it?

Polypropylene plastic mesh has not been convenient, disposable OR inexpensive for mesh-injured patients. The expense of the use of polypropylene mesh could never even be quantified. The precious injured ones and their families are PRICELESS. The financial and human losses of dignity, freedom, and quality of life FAR exceed even the most attractive legal awards ($73.5M, Salazar v. Boston Scientific).

Maybe our voices will be elevated to BPA-hysteria levels if we can connect with environmentalists; political ideologues, who loathe the oil-producing industry for so many reasons; and hovercraft, Soccer Moms who just want to make sure their children are not being poisoned.

Think about it.

Maybe we’re on to something. Maybe our cause and cries are more similar to those of Beth Terry at My Plastic Free Life than with those of anyone else.

If the healthcare industry and the FDA won’t listen to us, maybe the truly consumer-based industries will listen to us – when we stop giving them permission to make poison with our hard-earned dollars.

fake_plastic_trees

“Fake Plastic Trees”

Her green plastic watering can
For her fake Chinese rubber plant
In the fake plastic earth
That she bought from a rubber man
In a town full of rubber plans
To get rid of itself

It wears her out, it wears her out
It wears her out, it wears her out

She lives with a broken man
A cracked polystyrene man
Who just crumbles and burns
He used to do surgery
For girls in the eighties
But gravity always wins

It wears him out, it wears him out
It wears him out, it wears him out

She looks like the real thing
She tastes like the real thing
My fake plastic love
But I can’t help the feeling
I could blow through the ceiling
If I just turn and run

It wears me out, it wears me out
It wears me out, it wears me out

If I could be who you wanted
If I could be who you wanted all the time

All the time…
All the time…

 More about BPA:

The Baltimore Sun – October 4, 2015

ScienceAlert.com – September 29, 2015

Scientific American – September 25, 2015

Stanford University News – September 23, 2015

TIME Magazine – June 3, 2015

Loved Ones Perish While Mesh Manufactures Profit and the Legal Community Struggles to Keep Pace

Hello Warriors;

As most of you know, the defectively-designed mesh products and their complications, have taken the lives of at least two of our community members. Still many iterations of the mesh, including Johnson and Johnson’s TVT and TVT-O, remain on the market and are being implanted in women every day.

Dr. Steven Sukin, Urologist at Texas Urology Specialists

Dr. Steven Sukin, Urologist at Texas Urology Specialists

I recently came across this Woodlands, Texas urologist and his impressive C.V. In it, Harvard undergrad, and Baylor Medical School graduate, Dr. Steven Sukin, of Texas Urology Specialists touts his training as a “Proctor for Intuitive Surgical for Robotic Surgery.” A link from his website, titled, “Urinary Incontinence,” leads to this link citing TVT as an option for treatment. I learned of one woman last week who had “done her homework” and chose to have mesh implanted, by Dr. Sukin, for the treatment of SUI. My heart sank, and I have added her to a long list of folks I pray for regularly. Maybe she will be one of the lucky ones. I hope so.

As most of you know, Linda Batiste passed away on August 8, and her memorial service was a week later on August 15. The jury awarded Ms. Batiste $1.2M for compensatory damages on April 3, 2014.  The jury expressly stated that they believed Johnson & Johnson’s TVT-O to be defectively designed. The case is on appeal, and the family has not seen a cent of the jury award.

Our community also lost, Mrs. Joan Budke, whose case was settled against Ethicon’s Prolift, at the last minute, as her trial went into closing arguments and approached deliberation by the jury. Johnson and Johnson decided to halt proceedings, and offer a settlement of an undisclosed amount, on January 15, 2015, which Mrs. Budke’s surviving family members accepted.

Linda Batiste with her family

Linda Batiste (in a wheelchair) with her family

These women have one thing in common for sure.

They won their battles against Johnson and Johnson, but they lost their lives. 

They received justice. But justice came too little and too late, for them and for their families who are left with a giant void where their matriarchs used to endwell.

The loss of these two souls reminds us that the battle is not primarily a legal one.

The battle is for LIFE and FREEDOM from the threat of violence, disguised as medical treatment.

Joan with her family

Joan Budke (center) with her family

I am learning about the process of justice and the legal restraints sometimes placed upon the attorneys who defend us – the plaintiffs’ attorneys. Last Thursday evening, I attended a fundraiser, held for Judge Ken Molberg of the 95th district court in Texas. He was the judge who presided over Ms. Batiste’s trial against Johnson and Johnson’s and Ethicon’s TVT-O.

Sponsors of Judge Molberg's Fundraiser, Thursday, Sept. 10, 2015

Sponsors of Judge Molberg’s Fundraiser, Thursday, Sept. 10, 2015

As a non-profit, whose efforts are not primarily political in nature, TMWF could not donate to Molberg’s campaign efforts, although attending his fundraiser (or the fundraisers of any other elected official) is permissible. The event was held at a private home, a long-time friend of Judge Molberg’s, and a former lawyer herself.

During Ms. Batiste’s trial, I gained a great amount of respect for Ken Molberg, a Democratic judge who is officially on the campaign trail, seeking reelection. Molberg has presided over the 95th district court in Texas for seven years. The fundraiser’s hostess gave a heart-warming and humor-filled speech about the character of Judge Molberg. I found it to be absolutely consistent with his character in the courtroom.

As citizens, non-elected officials, we don’t always have a good understanding of what our public servants endure to defend our civil and human rights. As a judge, Molberg has been the target of those who disagree with his rulings, and our hostesses’ speech was a good reminder that there is great cost that comes to one personally, and one’s family, for doing the work of standing up for others.

Our hostess described one night, many years ago, when a group of unknown people broke into the judge’s home in the middle of the night. For just such occasions, the judge owns a rifle for self defense. However, for the safety of his four children who very young at the time, he kept the rifle unloaded, and after he commanded his wife and children to hide upstairs, in the master bedroom’s bathroom, he struggled to find the gun’s bullets. According to our hostess, Judge Molberg went outside on the balcony with an unloaded gun, and began to defend himself and his family, pointing the gun to and fro and yelling at the vandals and trespassers to leave or regret it. They left. They ran from his courage, not his bullets.

Our hostess concluded, saying,

“That’s the kind of man Ken is. He will defend you at all costs, even with no bullets.”

Judge Ken Molberg, seeking reelection as a state judge, for the 95th District Court in Texas

Judge Ken Molberg, seeking reelection as a state judge, for the 95th District Court in Texas

When it was time for the judge, himself, to remark; he began with a similar light-heartedness, saying he had all but forgotten the incident. He laughed, seemingly at himself, that he would ever have done such a thing. But his remarks quickly turned to the serious nature of his position and that he does not take his authority lightly. He thanked several friends and members of the crowd, mostly lawyers and other current and past judges. He went on to say,

“Everyone deserves the constitutional right to a trial by jury.”

He continued in a somewhat somber, more reverant manner, sometimes staring at the floor. He said that mass torts are not the kind of justice our founders imagined, and with great vigor and sincerity, he expressed gratitude for the opportunity to represent the justice of the people in our community when afforded the opportunity to preside over trial. He closed by humbly asking for the vote of each of us, noting he would continue to serve the rights of the people and in the public’s interest.

As a non-profit founder, I found myself as somewhat of a fish-out-of-water, but kind paralegals and even some plaintiff’s attorneys took me under their wings. One even donated two dollars for me to pay the valet to retrieve my car (Every dollar counts!).

Color For a Cause

Color For a Cause

The most encouraging exchange came when one of the plaintiff’s attorneys let me know that I, and the TMWF community, are welcome on their side of the courtroom – yes – even donning our blue lips.

The next trial set for Molberg’s courtroom is Carol Cavness v. Ethicon and its Gyenecare Prosima Pelvic Floor Kit.

Dr. Teresa Kowalczyk

Dr. Teresa Kowalczyk

Ms. Cavness is bringing a cause of action against her doctor, OB/Gyn, Teresa Kowalczyk MD, of Hunt Memorial Hospital in Texas; as well as Hunt Regional Medical Center and Baylor Healthcare System; Johnson and Johnson and Ethicon in this product liability action.

Jury selection begins September 21, and opening remarks are expected to begin September 23, 2015. I would like to personally call for any mesh-injured woman who can travel, to try to attend a few days of her trial. There is an odd healing that happens when you support another human being in this way. I believe it will be very important for our community to find a way to cover the trial, as it’s one of the first to involve suing the doctor and her supporting healthcare affiliates. I will not be able to report on the trial, as I will be at the 2015 Stanford Medicine X Conference. According to Jane Akre’s MND:

Jane Akre, Mesh News Desk

Jane Akre, Mesh News Desk

“The suit notes polypropylene material sparks an immune reaction; pathogens attach when the mesh is implanted vaginally (transvaginal); the mesh shrinks; the mesh causes friction with the underlying tissue causing the tissue to degrade; the mesh injures major nerve routes in the pelvic region and degrades over time taking with it the internal tissues; the welding of the mesh during production creates a toxic substance that contributes to the degradation of the mesh and host tissue; and the design of trocars potentially penetrates nerve-rich environments.”

The immune-system reaction has not been of great focus in most of these trials, though most every sufferer of adverse events, reports that it is a major factor in continued injury and chronic pain.

I pray that Ms. Cavness will receive justice in Judge Molberg’s courtroom, as have others, like Ms. Batiste, who’ve gone before her. I pray that the justice system, and the people of this country, can force accountability where the manufactures will not.

For a refresher course on how to prepare to attend a trial, see my blog post here. I hope some of you will be able to attend, and if you want to be welcomed, blue lips and all, here is the post I wrote about how to don your blues.

Find the courtroom location and contact information here. I hope some of you can attend.

#TMWF’s NEW “Yes M.A.M. Market!” just in time for gift giving!

Hello Warriors;

We at #TMWF are so excited to launch our e-store TODAY, December 1, 2014! Here is the link to our NEW “Yes M.A.M. Market!” e-store! Wow, a store just for YOU!

https://yes-m-a-m.myshopify.com/collections/all

Give the gift of HOPE, HELP and progress towards HEALING. Visit tmwfoundation.org and our new "Yes M.A.M. Market!" estore.

Give the gift of HOPE, HELP and progress towards HEALING. Visit tmwfoundation.org and our new “Yes M.A.M. Market!” estore.

The store is also accessible via the foundation’s website: www.tmwfoundation.org. Just click on “Yes M.A.M. Market!”

100% of the proceeds from each of the #TMWF Awareness items go right back into The Foundation so that we can continue to layer in more programs and more of our MISSION | VISION | and VALUES as the foundation grows. As we grow in funding, we are able to grow in the services we’re able to provide for the mesh injured and their families!

The “Yes M.A.M. Market” will be part of what helps us fulfill our monthly financial obligations, so that we are not solely reliant on donations and the continued support of sponsorships and fundraisers. We will still need traditional fundraising efforts, but the e-store will help raise awareness and keep us solvent.

Peace on Earth; Goodwill Towards Men

Peace on Earth; Goodwill Towards Men

You will see more items added to the store as we are able to buy more inventory. In the meantime, please check out what we’ve created with our mesh-injured loved ones in mind! We’ve thought about everything from very creative and stylish “#TMWF Awareness bracelets” to “Hospital Helpers,” a line of cross body bags for injured patients going into surgery.

We welcome your suggestions, product ideas, and feedback on the products you buy

Merry Christmas and Happy Hanakkuh!

Merry Christmas and Happy Hanakkuh!

for yourself and/or others. It’s our hope that the holiday season will deplete our current inventory, so that going into 2015, we have a great springboard to delve more into the help we’d like to provide and the programs we have planned to launch next year!

We continue to EDUCATE | ADVOCATE | and BUILD COMMUNITY as the core of who we are as an organization, and the pillars of our Mission Statement. Thank you for being part of our community, and part of the solution to create a customer-centric healthcare system. After all, we are the consumers who pay in ways we should, and in PREVENTABLE WAYS – ways that we certainly never should have – MEDICAL HARM that we paid for with our dollars and with our lives, and that we continue to pay for after we’ve been egregiously harmed by a healthcare system we believed was trustworthy.

At #TMWF, we believe the more we HELP, the more we HOPE and the more we advance towards HEALING as a “Family of Chance.”

Much love to you and your family this holiday season, and as your friends consider where they might spend their charitable dollars this giving season, please ask them to consider helping the ONLY NON-PROFIT that exists solely to help you, the mesh-injured patients and your families.

Thank you for being a part of our growing community!

Your humble servant warrior,

Aaron Horton/The Mesh Warrior