Summarizing Events

Yesterday I posted a blog that has I am sure upset many women and today I am going to tell you how this all began and blew up in just a few days. It has been less than two weeks since my daughter joined the Medical Mesh News Desk support group and you could blame HER for the series of unfortunate events that took place after that, but she wound up in the middle of a flurry of angry women who had been holding back for years. So now I will tell you how this it all went down. It is usual for the messenger to be shot of course, but there is far more to any story.

For the last few months I had been working on my No More Mesh campaign. For a lot time I had hoped that the FDA warnings and everything that has been happening to women because of mesh would change without me doing so much work. But as the years have gone by, nothing is changing and doctors are now saying even more that they don’t use THAT mesh when women question them about the warnings. Therefore more women find themselves in trouble and that is only the ones who find out early. What we now know from all the women who come here is that many do not begin to have any complications until three or more years later. Then they are in the same mess trying to find a doctor who can remove it close to home and realizing it isn’t that simple. And that’s the ones who have been diagnosed with mesh erosion. Most of the women who have leg pain or even kidney issues are never diagnosed with mesh complications unless they go far from home.

Dr. Raz and his team are wonderful but Dr. Raz is an older man who cannot live forever. We know he has now done over one thousand mesh removals himself in the last few short years. Mesh removal is like everything else in life. You don’t get experience unless you do a lot. He is also amazing at removing it from women’s colons and off the bones when it has fused itself on the pelvic bones and spines of women. But most urologists do not have that experience because now you need several surgeons in an operating theatre to do the same thing he does alone. This is because everyone is a specialist. That makes it much harder to find the right kind of removal doctors.

So what then can we do? Well I personally decided to research and begin a campaign to stop the use of mesh altogether UNLESS there is absolutely no other option. Right now thousands of women are being implanted with mesh slings for absolutely no reason at all. I was one of them but never understood what was put into me or how it could change my life for the worse. No one is taking a stand against this overuse. Any doctor who does anything with female anatomy can implant mesh and it has become the most popular or fashionable thing to do. That is why I decided I had to research and find out more about where mesh comes from originally and how it makes it to the market for surgeons to use.

I was doing just that when this all began and had been sitting talking to my daughter about what I had found. She was quite taken aback at the infancy of mesh and she too began researching. My goal changed to our goal. To get a documentary out there to explain far more about mesh in a way non mesh injured women would understand. My daughter looked into distribution and where to put it to make the most impact and we made a plan.

We have a movie camera she had once bought on clearance, but when you make any movie the sound has to be better than a built in microphone. So over the past few weeks she was searching for a camera that had the capabilities she needed and found a reconditioned one from the company that makes it. Then she ordered a couple of small things from overseas such as an adapter and two mini microphones. She sold a few things to pay for it and in all spent less than two hundred dollars.

In the meantime I continued doing what I do through my blog and continued on my research to begin this new project. I had hoped that the ‘documentary’ that I had been part of would take care of some of the other things but I realized it wouldn’t when I saw the trailer.

Let me clarify something. For me personally three hundred thousand dollars for a one hour documentary is huge. That is because I live in a world where there is so little money for myself and for other mesh injured women. I look upon that money in a different way. If I had three hundred thousand dollars to spare I would never use it to make a one hour documentary. I would rather give three hundred women one thousand dollars each to help with their travel expenses to go elsewhere to have their mesh removed. But that’s just me.

This is the digital age. You can make a documentary for very little money but a lot of time. I already donate between 40 to 50 hours a week of my time, so why not use some of my time on an educational documentary that could change the lives of thousands of women.

My daughter has a lot of electronic and digital capabilities and has worked in Marketing and Law in the past. So she will donate her time along with me. Somehow we will do something towards the end goal to get the mesh off the market and making sure this does not happen to the women of the future.

What happened while all this was going on, David Sawyer of TVT-No told her to go and start her own thing, all because she posted questions on the Medical Mesh News Desk support group. He did not know she had already set up a Facebook page called Mesh Avenger, which was going to be a place where women could follow the journey of mesh, where it was manufactured and more. But….just the few questions that were asked by her and other women on MMND support group aroused a lot of angry and frustrated feelings among women.

Many women have been kicked off TVT-No just for asking for accountability of what funds came in and where they went. They then began to research on their own and gather information. Let me clarify. I am not now nor have I ever have been on the closed TVT-No support group, neither was or is my daughter. I am too busy and didn’t need to take on any more and she is trying to finish the house alone that we live in because I can no longer help. TVT-No was not my concern neither was it hers. But when she opened the doors of the Mesh Avenger page she was flooded with private messages from women who wanted things out there that they had been kicked off just for asking questions.

Not only that but women also wanted to know many other things about other organizations and some sent her papers. Yes women are quite intelligent and resourceful, especially when they have been spurned.

A few times she tried to get the mesh thing back on track, but that is not what women want right now. They want to know the trail behind many things and they wanted her to ask questions of Jane Akre. She did and that wound up with her being kicked off the support groups she had just joined. Women knew it would happen to them, so they asked her to do it for them.

I would like to say here that it is NOT illegal to ask questions. So after waiting a few hours for a response about the documentary from Jane I posted the same questions, including the one my daughter asked, on my Mesh Angel page. You may wonder why. Women were continuing to ask my daughter and was quite frustrated when these questions were not answered. These were questions. Not threats.

Imagine my surprise when I woke up Friday morning and found I had been locked out of Facebook. Fortunately I had gathered the phone number the night before of a woman that is also mesh injured and I called to ask her was our meeting was still on to visit her and her family that day. It was. But had I not written down the number the night before I could not have contacted her because I was locked out of my private messages.

We did have a lovely day with this family on Friday, the day of my birth and they were so gracious and we had a lovely lunch and a Birthday cake. They made my day much brighter and I want to thank this family for giving me a wonderful day.

When I got up Saturday morning I was surprised that the twenty four hour period of Facebook lock down for absolutely no reason, still continued. I had already taken legal advice but was waiting to be let back in again. When I couldn’t I began writing and sharing what had gone down over the past few weeks in a blog. I will give you the link at the bottom of this blog.

Some people will think reading it, it was a witch hunt. That would be so far from the truth. In fact if the tables were reversed and this had happened to you, then you would think it was a witch hunt on YOU. I didn’t. What bothered me was all the things that have happened to me through Facebook in the past. Yes I have made enemies as anyone would doing what I do, all because I exposed the corruption about the so called ‘legal’ high interest loans that women take but don’t know the truth of what it will cost them. I can’t help it, but let women know. I knew that many women will be taken for a ride by people who make out to be their friends. Exposing what they do makes those on the take very angry.

Like it or not there is corruption is in every part of our lives but when it comes to something like this, corruption happens at the smallest level. Even your own kind will do anything to get what they want to help themselves. I am not saying people should not make money if they help people, but they should be transparent. If asked a question concerning what they make by helping mesh injured women, why not answer. If asked to show your non-profit records, why not show them. Accountability is the way to go to stop all the rumors.

When questions are danced around or not answered, it causes a huge flurry of speculations. NOT taking any money from doing this means everyone knows exactly where I stand. If I did, I would be under the same speculations as anyone else and deservedly so.

Let me clarify something else. I have never said any of this was illegal. In fact it isn’t. Women want the truth and when they know if someone is making money or will receive money at the end of this, then that is okay. But what happened when women asked why Jane needed their information including their lawyers name caused a huge stir that I did not start. They were already on their phones trying to clarify with their lawyers if this was in fact something that should be asked of anyone other than those representing them. They asked Jane themselves and it took a few hours to get the reply that it was only for her records. Then they wondered why she needed their lawyer’s names for her records. Behind the scenes they themselves began digging and asked my daughter to find out more. The ball was in motion and it could not be stopped.

I would also like to clarify my daughter has only posted links to public information. You can decide what you think for yourself and ask questions if you choose to. You can also choose not to read anything including this blog. This is a free country and we do have freedom of speech.

Which brings me to my final point of this blog. My freedom of speech was violated by Facebook. I think I know what happened but I am going through the proper channels to find out who did this to me. I believe it was a group of women who sent in to Facebook to potentially get me totally removed from there. I ‘think’ they thought if enough of them got together they could do it. But I had only posted links to the blog and links to stories of mesh injured women around the world who are fighting for change. Yes fighting for change and not each other. Now I ask you. Do you think that was a witch hunt on me? I do!

The only thing that was left was two other items on my Mesh Angel page. This is one of them but that was not objected to.
I have to say something here. Someone has stated that a woman by the name of Lil is me on closed support groups. I do apologize to Lil whoever she is because she is being slighted because others thinks she is me. So here today I am telling you I have NEVER once called myself anything other than Linda Kilpatrick and my blogs are written by me alone under the Mesh Angel Network. I am NOT on any hidden groups either. I don’t have time because I spend all the hours I can helping women, researching and writing blogs. So please don’t slight Lil ever because she does not deserve it and the poor woman probably needs support. If you know her give her my apologies that this has happened to her.

The other was the one that got me blocked. You can read all about it here

I am sorry if I offend anyone’s sensibilities because that is not my intention. My intention is to educate and part of that is to inform on matters that not everyone will like. I want to be part of CHANGE!

8 Comments

  1. sylviarose74@yahoo.com

    Dear Linda,

    Thank you for taking the time in baring your heart along with what transpired over the course of the last several day and also when you were interviewed 2 years ago.

    I still don’t understand what you did to warrant having your FB shutdown. You need to find out, I am puzzled. You didn’t attack anyone personally. But, they in turn ridiculed both you and Kim. They sidestepped the real issues. A couple of times Jane ended her comments with a compromise solution. Jane has been out of line in asking for private information since joining CAN. If women aren’t willing to admit that this is invading privacy issues connected to our lawsuits, than I am highly disappointed and it can hurt the rest of us. What a way to hush this up by continually saying, “let’s focus on the mesh.” How very cruel.

    Reply
    1. lavalinda

      I couldn’t get to answer this until now but thank you for your continuing support Sylvia. This is very hard to do and no one wants to do any of this but if I close my eyes I am no better. I gave her a fir opportunity to answer the real question after Kim got kicked off her support group. But I paid a price when I posted on my Mesh Angel Facebook page. We can’t change any of this mesh business until the truth is out. Regardless of what it costs me.

      Reply
  2. Nancy Mikitka

    Linda and Kim, I am so sorry for what you have gone through and are experiencing because of trying to get the truth about the dangers of mesh known. Thank you for the research you do, for sharing your findings and not being afraid to ask the hard questions. I agree with you, the messenger is always the bad guy…yet, the questions need to be asked and this information needs to be told. I cannot agree with you more, transparency is so very important. If there is nothing to hide, than there is no reason not to be transparent. It saddens me beyond measure to think there are those who are or will make money because of our suffering from the mesh nightmares we have or are enduring. I also agree the focus needs to be on all mesh and not just one manufacturer or company who sells mesh because, once again, you are so right, the way around it for these companies is to just start another company and to continue to make and promote the mesh to the medical community. Thank you from the bottom of my heart for being willing to take a stand.

    Reply
    1. lavalinda

      Nancy I appreciate any woman who is willing to speak out, because I know she may be chastised. We can never stop mesh if we don’t change what is going on. We can never join up as a good group until everyone is on the same page. Mesh is the true issue. Not the brand.

      Reply
  3. Samantha Squires

    All of the events over the past few days has taken the focus off of what we should be concentrating on and the work to be done to end the mesh pain and injury. I have no idea who reported you to facebook but I can tell you most likely why you were and it is in the help section of facebook. There are rules for how we behave on facebook and how we treat others. I have copied and I will paste it here for you. I wish you the best of luck and your daughter as well and the works that both of you do will benefit all mesh victims. I am not saying that you are a bully or anything close to it. I am giving you this information just so that you may see where some of the things that we said and the constant questions and the tone may have been perceived as bullying or even harassment. I looked this up after reading your blog and I wanted to share it with you. This may be behind you being locked out.

    Facebook offers these tools to help you deal with bullying and harassment. Depending on the seriousness of the situation:
    Unfriend — Only your Facebook friends can contact you through Facebook chat or post messages on your Timeline.
    Block — This will prevent the person from starting chats and messages with you, adding you as a friend and viewing things you share on your Timeline.
    Report the person or any abusive things they post.

    Reply
    1. lavalinda

      I read the section you are speaking of in their rules and none of it applied. It was on My Mesh Angel page and not on my own personal page timeline so you are way off base. I will get to the bottom of it and find out how many women did this and it was NOTHING to do with what I said. There was no harassment. If that is the case then EVERYONE would be OFF Facebook for setting up a page and asking questions. Now something else. You also have tried hard to redirect when I asked questions on Jane Akre’s Medical Mesh News Desk support group page. So you are also part of the problem not the cure. So get off your high horse and get the facts right. I did NOT bully nor harass anyone. The Mesh Angel page is open to whoever wants to read it. But YOU DON’T have to and neither does anyone else. In case you missed EXACTLY what I said, please read and take it in without twisting it. Then you MAY have the facts IF you truly want them. Here is the link http://meshangelnetwork.com/2014/06/happy-birthday-to-me/

      Reply
  4. frances

    Linda transparancey is everything and you did no wrong in what you asked of Jane Akre

    Reply
    1. lavalinda

      Frances, I completely agree.

      Reply

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