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.

 

 

 

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.

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*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 KEEPS THIS STUDY AWAY/Dr. Ty Erickson & Lisa Boozer, CRC, of Rosemark Women Care Specialists in Idaho

Hello Warriors;

As I write what is now the fourth blog, citing “a-doctor-a-day” who is participating and actively recruiting for a study that would implant NEW WOMEN with Coloplast’s Restorelle Direct Fix mesh product, I realize that my blog posts could come across as a “witch hunt” of sorts. This notion couldn’t be further from the truth.

I have a genuine and deep concern for the 900 women who would be participants in this study if it proceeds, and I am trying to engage physicians. I reference fact-based evidence, cite published scientific research, and offer these doctors information about the FDA warnings regarding mesh implant, especially for POP.

If you are a mesh-injured patient, you are keenly aware that many of your physicians ARE NOT AWARE of the FDA warnings but became aware when you, yourself, brought it to your physician’s attention.

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

My letter to the FDA regarding: Restorelle® Mesh Versus Native Tissue Repair for Prolapse

View my letter to the FDA (left) and CLICK HERE TO READ MY BLOG ABOUT IT, citing specific reasons with third-party sourcing. You may want to use some of this information when you contact physicians recruiting for this study.

In addition to my posts here, I am calling and/or emailing EACH doctor/lead researcher personally. I IMPLORE YOU TO DO THE SAME.

I want our community to engage in a conversation with these folks to explain WHY THIS STUDY IS FLAWED IN DESIGN AND IS UNETHICAL.

I AM NOT MERELY “EXPOSING” DOCTORS OR TRYING TO HARM THE REPUTATIONS OF THESE FOLKS. I am trying to start a dialog, so that our community’s voices are heard, and so that these doctors know how large is our community of severely injured people.

To that end, today’s doctor to call/email is:

Dr. Ty Erickson and his colleague Ms. Lisa Boozer, CRC, of Rosemark Women Care Specialists.

Rosemark Women Care Specialists
Idaho Falls, Idaho, United States, 83404
Contact: Lisa Boozer, CRC    208-557-2981    lboozer@rosemark.net
Principal Investigator: Ty Erickson, MD, FACOG
Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair.

Dr. Ty Erickson, a physician actively recruiting patients for the Coloplast Restorelle Direct Fix vs. Native Tissue Repair at Rosemark Women Care Specialists in Idaho.

As a gentle reminder:

When/if you call, start by listening and asking the doctor/liaison questions. Try to open an honest dialogue about why you think the study has the potential to seriously harm women, and why this harm is PREVENTABLE, since there is already a population of implanted patients to study.

When you call, be as clinical and brief as possible. Our stories are SO PERSONAL and of SUCH DEVASTATION, that we can be tempted to rely on any ear to listen to the horror of our stories.

I am suggesting that you call these physicians in an effort to help the patient population who is being recruited. Lean into your community for social support for your own injuries and for coping with the significant loss of quality of life that you endure.

The goal is making these calls is to INFORM physicians about the PREVENTABLE harm this study will cause. 

Here are some questions you might start your conversation with:

  • You might first start by asking listening. Document his/her answers.
    • WHY, doctor, are you participating in this study?
    • HAVE you seen the research proving mesh is unsafe as a permanent implant?
    • ARE you aware of the adverse reactions of the patients you have formerly implanted? Would you follow up with them and ask how he/she is doing 3+ years after implant?
    • ASK – What’s in it for you doctor? Are you aware of the legal implications?
    • ASK – Are you being personally compensated for this study and in what ways?
    • ARE you aware of the liability you face In federal Bellwether trials, some physicians who’ve testified no longer practice. Are you aware that significant liabilities may be of great future burden to you and your practice?
    • EXPLAIN the reasons you do not want this study to proceed.
    • EXPLAIN to them that your intention is to inform, give he/she more resources and information to have the chance to CHOOSE to halt participation in this study.
    • BUT, if he/she will not take your call seriously (or take your call at all) you will take other actions, like contacting your state’s AG.
    • INFORM he/she that you will use your voice online to dissuade women from becoming patients of their practice.

Below is a list of physicians/facilities I have already contacted. If you have not yet contacted one or more of these physicians, please click on the link for contact information, and please contact them immediately.

If WE do not make our voices heard, who will? We are PLAN B, and there is NO PLAN A.

Dr. Babak Vakili & Jennifer Mann, BSN RN: Delaware’s Christiana Care Health System

Dr. Sherry Thomas/Agoura Hills California

Dr. Arturo Menchaca/Paris Community Hospital of Paris, IL

A Doctor A Day Keeps This Study Away/Dr. Babak Vakili & Jennifer Mann, BSN RN at Delaware’s Christiana Care Health System

Hello Warriors;

Below is a link to an active study that is recruiting 900 NEW WOMEN to compare Coloplast’s Restorelle Direct fix for repair of POP to that of Native Tissue Repair.

Restorelle® Mesh Versus Native Tissue Repair for Prolapse

I am posting a doctor a day. You can help our community and participate by trying your best to keep more innocent women from being injured by polypropylene implant by calling these doctors (ESPECIALLY, if you live in the doctor’s community). Ask questions about the study, and share with them WHY you don’t think this study should continue.

Today’s doctor to call or email is:

Dr. Babak Vakili of Christiana Health Care System in Delaware is participating in the Coloplast Restorelle Study.

Dr. Babak Vakili of Christiana Health Care System in Delaware is participating in the Coloplast Restorelle Study.

Center for Urogynecology and Pelvic Surgery, Christiana Care Health System Recruiting
Newark, Delaware, United States, 19713
Contact: Jennifer Mann, BSN RN CCRC    302-733-3056    jmann@christianacare.org
Principal Investigator: Babak Vakili, MD, FACOG

See the spotlight doctors from last week’s posts below:

Dr. Sherry Thomas/Agoura Hills, CA

Dr. Arturo Menchaca/Paris, IL Community Hospital

Art in many forms motivates, inspires me and soothes me. This video was sent to me by a the family member of a mesh-injured woman. No matter what your musical leanings, listen. The voices are beautiful and we can all relate to the lyrics. BE INSPIRED TO ACT!

Let’s support Carol Caveness as she takes on JnJ/Ethicon’s Prosima Mesh!

The layout of a typical U.S. CourtroomHello Warriors;

I understand how hard it might be to even imagine getting out… but IF YOU CAN, please try to attend one or two days of Carol Caveness v. Ethicon’s Prosima. Remember, Prosimia was taken OFF THE MARKET. How will #JnJ defend from that position?

NEED TO KNOWS BEFORE YOU GO!

1) Read below article from Law360* about the details of the case.

2) Read refresher blog on how to attend court with confidence as a citizen observer.

3) Directions to the 95th District Court in downtown Dallas, Judge Molberg Presiding

J&J’s Ethicon Unit Defends Pelvic Mesh In Dallas Trial

By Jess Davis
Law360, Dallas (September 22, 2015, 9:29 PM ET) — Johnson & Johnson’s Ethicon Inc. unit told a Texas state court jury on Tuesday it is not responsible for injuries sustained by a woman who had the company’s Prosima pelvic mesh implant, in the country’s first trial involving the Gynecare Prosima Pelvic Floor Repair System.

In opening statements Tuesday afternoon, Ethicon told Dallas County District Court jurors that plaintiff Carol Cavness is suing the company for injuries its product did not cause, and defended the safety of its device. Cavness is seeking unspecified damages, including a punitive award, against Ethicon, which she says pushed an unsafe and defectively designed product to market despite knowing it had a high risk of complications like the years of pain she has been suffering.

Cavness’ attorney, David Matthews of Matthews & Associates, told jurors they would be the first in the country to see evidence of Ethicon’s internal development documents for the Prosima device and the warnings he said the company’s own doctors and consultants issued about the safety risks of the device. Excerpts from the documents he showed during the opening described Prosima as a “reckless product,” said “Prosima is not needed” and said the doctors had “low confidence in the data.”

“This company had multiple opportunities to stop a product they knew was dangerous but they didn’t because they pushed it for profits,” Matthews said.

He said Ethicon was told the Prosima’s plastic was too stiff for the vagina and that it was an unnecessary device because an existing surgical technique was available that achieved the same result with lower risk.

Cavness, an aircraft mechanic, was lifting a heavy object at work in April 2012 when she felt a groin strain, Matthews said. Within days, a doctor diagnosed her with pelvic organ prolapse and she had surgery to repair the prolapse with a Prosima implant, along with several other procedures.

Cavness filed suit two years after the surgery and claims that within a month of the Prosima implant, she began to have severe pain and difficulty walking. In the years since, she has had continued pain, chronic inflammation and massive scarring in the pelvis, makes weekly trips to her doctor and has developed depression and anxiety, Matthews told jurors.

Ethicon attorney Kat Gallagher of Beck Redden LLP largely steered clear of the safety of the Prosima device in her opening statement, instead concentrating on Cavness’ medical history and telling jurors the pain Cavness suffered was never caused by the Prosima mesh.

Gallagher said the pain was likely caused by “pelvic floor disorder,” a disease she was diagnosed with in May by a specialist who Cavness had not previously seen. Gallagher said an expert witness will testify that the pelvic floor disorder was triggered by the 2012 injury Cavness suffered at work.

She told jurors that though it took years to discover and that the company empathized with the pain Cavness had suffered, it was the pelvic floor disorder and not the Prosima mesh that caused her so much pain.

Gallagher did address Ethicon’s decision to pull the Prosima and other pelvic mesh devices from the market, but denied it was because they were unsafe. She said that health notices issued by the FDA about pelvic mesh scared women and made doctors fear litigation, translating to plummeting sales of the Prosima device.

Low sales figures caused by negative publicity about pelvic mesh, combined with the $4 million to $5 million cost of performing a safety study, is what made Ethicon pull the product, she said.

“This was a business decision by Ethicon in the face of what was happening,” Gallagher said. “A business decision.”

The first witness in the case will take the stand Wednesday morning.

Cavness is represented by Bill Blankenship of William F. Blankenship III PC, Tim Goss and Rich Freese of Freese & Goss PLLC, Richard Capshaw of Capshaw & Associates, Kevin Edwards and Peter de la Cerda of Edwards & de la Cerda PLLC, and Julie Rhoades and David Matthews of Matthews & Associates.

Ethicon is represented by William Massie Gage and Helen Kathryn Downs of Butler Snow LLP and Kat Gallagher of Beck Redden LLP. The doctor is represented by Philipa Remington and Cathryn Paton of Thiebaud Remington Thornton Bailey LLP.

The case is Cavness v. Kowalczyk et al., case number DC-14-04220, in the 95th District Court of Dallas County, Texas.

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

Judge Ken Molberg, state judge, for the 95th District Court in Texas

A Tribute to Ms. Linda Batiste: Mother, Grandmother, Nurse, and Mesh Pioneer

Linda_Elizabeth_Batiste IMG952180To Our Mesh Family and Mesh Warriors:

Please share this post with your family, friends, and community.

My friend, and MESH PIONEER, Linda Batiste has passed away. She went to be with her Savior Saturday morning.

If you are well enough, and close enough to attend her memorial, it would be a generous support of her, her family, and our mesh community.

Ms. Linda Elizabeth Batiste passed away on Saturday, August 8, 2015.

She would have been 66 on October 29.

Viewing and Family Reception – 10:00 a.m.
Memorial Service – 12:00 Noon
Chamberland Funeral Home
333 West Ave. D
Garland, Texas 75040

Graveside Service to Follow:
Lincoln Memorial Park
8100 Fireside Dr.
Dallas, Texas 75217

Ms. Batiste was a woman with a sturdy, loving character, who always maintained her faith and believed with all her heart that God’s will for her life was for her good and His glory.

She was a mother, grandmother, great-grandmother and friend to many. She is survived by her son James Clinton, her daughter Lydia Elmore, grandchildren James Carheel, Carrie Phillips, Sara Gaston, Tasha Clinton, Joshua Clinton, Linda Elmore, Terrance Jefferson, James Elmore, Naddeah Clinton, and Anthony Elmore, and host of great-grandchildren.

Ms. Batiste was a pioneer for all women suffering from mesh-related complications. Enduring pain and while walking with a cane, Ms. Batiste attended almost every day of her landmark trial against Johnson and Johnson last March and April. Though she lost the battle for her life; she died knowing that she had won the war. Johnson and Johnson has appealed her verdict, but 12 jurors in a Dallas courtroom granted justice to her family and her.

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Grandson, Joshua Clinton; Ms. Linda Batiste; and Aaron Horton – at an event to honor Ms. Batiste after her trial concluded.

Her favorite flower was The Sunflower, and her favorite color was purple. The 23rd Psalm was her favorite scripture, and she recited it often.

Please send words of encouragement or other sentiments to:

Chamberlain Funeral Home

On Behalf of Ms. Linda Batiste

333 West. Ave. D

Garland, Texas 75040

The family is in need of donations for food during this time and a headstone. Please click on the link below to donate for these purposes. The link has a tracking number, and 100% of the proceeds will go to James Clinton (her eldest son), her grandchildren and her great grandchildren. You must be logged in to the site to donate, though you may do so anonymously.

https://themeshwarriorfoundation.nationbuilder.com/linda_batiste

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Make Lemonade from Lemons. Make MUSE-ery from INJURY. . . . What pain taught me this Halloween!

So, I tripped. On some rocks. On Halloween night. No substance abuse. No costume. It was the curiosity that killed this proverbial cat. So here begins. . . . MESH TAKEBAKES… duh, duh, DUH!!!!  INJURY to MUSE-ery!

HALLOWEEN INJURY (No make-up needed, swollen, blue and disfigured – perfectly naturally!):

OUCH! DISLOCATED TIBIA HEAD.

OUCH! DISLOCATED TIBIA HEAD.

turned into…

MUSE-ery when “COOLNESS FACTOR” of wearing planned costume dropped by 98.4% automatically with totally inappropriate shoe choice and wince of pain on painted face.

But, I was not to be defeated… so, if you can’t beat ’em, draw ’em – right? Whatever! You get the point. Let your pain be a teacher. This is my fourth drawing EVER. I didn’t even know I COULD draw until it hurt too much to do anything else! Thanks pain for teaching me how to draw missed opportunities! She’s a Catrina. She’s’ already dead, she’ll be waiting for me next year!

CAN'T WEAR THE COSUME, SO I'LL DRAW IT. MY VISION OF A BEAUTIFUL MESH-INJURED "LA CATRINA." FOR DIA DE LOS MUERTOS.

CAN’T WEAR THE COSUME, SO I’LL DRAW IT. MY VISION OF A BEAUTIFUL MESH-INJURED “LA CATRINA.” FOR DIA DE LOS MUERTOS.