Changes for Women

Being disabled means I don’t get out of the house very much and I don’t see many people. So I use my keyboard and do all I can to give women the truth of what is happening or will happen to them because of medical mesh, either pelvic floor or hernia mesh. Being disabled means my body is disabled but my mind, thankfully has not been affected by all I have gone through. I know many women who are badly injured feel lost and hopeless but I want you to know you too can make a difference.

My trip out to UCLA to accompany a woman who is living in hell because of these products, was really good for me. I sit here at home, speaking to women over the phone but it has been a while for me to sit in front of so many injured women and listen to their stories and watch their tears flow. That trip although difficult on my body was very good for my mind because it gave me new resolve and new challenges.

Since I came home I had a couple of bad leg pain days, but regardless of dealing with that, I sat and thought a lot about what I learned and how I can make a difference in the War on Mesh to make my work more affective. I knew there were two areas I need to concentrate on. Young college women who are the victims of the future after they have children and older women who are at high risk because of prolapse and incontinence in later years. I know that the manufacturers and doctors are going to continue doing this to women of ALL ages and the results will be several generations of disabled women who can no longer have sex. This does not matter to these people, but it does to me!

I do struggle at times because of my constant dizziness and leg pain and I am hampered by the fact that I can no longer drive. But I have a wonderful daughter who will support and help me with any of my goals. This is because she sees what I deal with and she has met many other mesh injured women and listened to their stories. Contrary to people like Halina Myers belief, my daughter is a very happy person who has other things she is involved with that keeps her happy. So she is not an angry woman as is often mentioned on various support groups. She is however frustrated at the level of abuse, both financial and emotionally of others who seek to make a quick buck from our situation, just like I am.

While out at UCLA I learned what has happened to other women and they may not realize this but every story is imbedded on my mind. It has been five years since I began writing this blog driven by the search for answers. There are going on four hundred blogs here that I have written about everything to do with all the things I have learned about mesh and how to survive it. I know you may think “what else can she write about”, but for me it is easy. It is easy because I listen to women, I research and I learn. Then I share.

My blogs don’t always come from the world of the mesh injured and the one I posted about emotional support dogs is a good example. It came from me living in the real world and from meeting others through our dog rescue. I may not be able to go out all the time, but the world comes to you if you find something in your life that makes you happy. And you learn! Boy do you learn and that learning curve keeps you going even on bad days.

I know other women who are bound to their homes for the most part because of serious mesh injuries. Some I have known for a very long time and this morning I was reading a long email from a very intelligent woman who misses her life of teaching and meeting others outside of her home. Fortunately her husband has stuck with her through all this, although the stress on him definitely shows. It is not easy for any carer who lives with you. I am going to share with you a few things she said in her email. She knows she can trust me not to reveal who she is and if it helps others then she is quite okay with it. The point of doing this is to let you know you can find a way to continue your life even when it is very difficult.

When you read this I want you to know that she is usually in bed suffering long term damage due to her mesh complications. She has learned to accept the walls that surround her but her husband cannot stand it all the time, so sometimes he goes off to visit family for a couple of days and she allows him this because she understands he too should not live in a unenforced prison. When he comes back he seems happier and that is what she wants for him. She writes me long emails because she is intelligent and needs to let it all out. I understand it and know she hates not being able to communicate with others on a regular basis. Now you can read how she lives.

I do realize all too vividly I go on too long talking or writing! I never used to be this bad. I had to be concise etc. teaching. But it is extremely hard for me now. I KNOW a lot has to do with all the stress, months and years of being confined at home.   It feels like my brain has turned to MUSH and no one listens to me. Lord knows ——– has had his share plus. But because I don’t have conversations with hardly ANYONE. I have literally feared of losing my sanity this last year. But I know the people that DON’T think they are close to that or have a problem are usually the ones who DO.

I wrote a blog recently called Ticking Clock I wrote it because I know what women go through and how lonely the world of living with serious mesh complications is. I know the silence of the night even though family may be there living with you. This is why I continue writing to give other women credence and acknowledgement to living this way all because of medical mesh. Now read more.

But I am starved for interaction with other people. I go overboard with receptionists at Doctors etc. Usually me telling my story of Mesh in a Nutshell and warning ONE more person. I might have told you, but about 2-3 weeks ago I talked the 14th person I know for SURE out of getting a surgery with mesh. A lady in her 70’s who was on Ebay and said just that morning before she opened up my message she had thought she should get a mesh sling. But when she opened my message and heard my story she said I CAN put her down as the 14th person who will NEVER get one now. She is confined to sitting and uses a motorized wheelchair so you can IMAGINE the nightmare she would have gone through. Some have been people I know but some have been customers or Sellers on EBAY. I know that is not even a drop in the bucket compared to your valuable lifesaving BLOG, but it always makes me feel SO GOOD AND USEFUL each time it happens. Plus it makes me feel as if PERHAPS there is a reason I am STILL here? I also always recommend your blog so they get stories from more than ONE person!

Yes she is still useful and to save one life is wonderful but to save fourteen is fantastic. That is fourteen women who won’t wind up housebound like she and I are. I am not sure of the count now because I don’t have time to keep up with how many lawsuits have been filed because of pelvic mesh, but I believe it is around 80.000 women. Think of this. If every one of us save one woman from living like this, that’s 80.000 saved. If we each save fourteen women that is HUGE! We can make changes in many ways even if we think we can’t.

I am fortunate to be able to continue to write and to share all I learn. It would be very frustrating for me to sit around watching TV and doing nothing as I have done while recovering from numerous surgeries I have had since mesh was put in my body five and a half years ago. In fact it would drive me crazy to do that all the time. Instead I design and make things, I am slow but it makes me happy. I write and share things I make by writing free blogs. I enjoy the dogs and I write about them so that my daughter can do things I can’t. We love hearing from our adopters and getting new photos showing how they live their lives after they leave us.

Life hasn’t stopped for me, it has just slowed down. I also want to share with you one last small piece from her email.

I really needed to say what I did. I love the way you share on your blog. It lets me know you too like to write about your life and feelings too which my counselor says IS good for me. Just not every email to everyone! Ha! GOD BLESS! LOVE YA! ————–

So the point of this blog is to let you know that your life is WORTHWHILE. I know another woman who has gone through so much and she began writing a book about her life for her family. I did that in my 50’s when my husband was so ill for a long time, before his death. By doing it, I cried as I sat at the computer but I began to heal inside. Life is tough and you have to let it out somewhere, even if no one else reads it.

I recently heard from another woman who told me her mother’s ninety year old friend was about to get a sling because of incontinence. When she heard about it, she immediately set about rescuing her from death by mesh. Yes it often means death to older women and yet doctors still do this without any thought as to how it affects older women. That makes me very angry.

My daughter subscribed to Acorn TV for me because it has interesting British TV shows that I enjoy, such as period and documentaries. It only cost five dollars a month and I get a lot out of it. A new documentary was added this month about women power in history. About all women have endured because they were never listened to. It is quite shocking but informative and it made me think we still have a long way to go. You can see it here

Ladies we are still at the bottom of the line when it comes to being listened to by doctors and we have to work to change this. That means we ALL need to reach out and touch the lives of women who WILL become mesh victims if we don’t. We all know the story of the suffragettes. Those women have died out, but they left a legacy behind. Freedom for other women. But we still are not free. We are used by the medical world as Guinea pigs and you have to get it through your head that your children and their children will be victimized if you remain silent.

Yes I often get sick of the word MESH! So does my daughter which is why we do other things. But I also know exactly what being injured by mesh feels like and the long term results. That is why I keep writing. That is also why I am willing to look to other directions to make changes.

I am not stuck in a loop thinking the same thoughts about mesh. I constantly learn by reaching out to others, not always about mesh, but about life. I will continue to live my life until I am no longer able and I will fight to get the word out about all that mesh has done to me and what it does to other women. That is how I keep going dealing with my own complications by listening and helping others. Please reach out and try to change this for the women of the future. As I try new things, I will share with you so that you can do the same.

I saw this image and I thought how appropriate. Yes smart women make changes and you can too. Never believe you can’t!


4 Comments

  1. Suki

    Great article Linda ! What makes your blog so great to read is that every experience – every conversation you have – you reflect on and ponder what the lesson in the story is – and your in site on those lessons are very powerful – they have helped me do many times on my 2/3 year journey and that you stay focused on the positive move forward and never judge a mesh ladies experience or journey but stand to support them … Is a gift that has helped many – me being one of them – thank you .

    Reply
  2. T

    It’s a grueling journey, yes, but we all must continue! My poor husband is so sick of mesh, but I tell anyone who listens. I know I’ve helped save FOUR women now from our pain! I won’t let my daughters or friends be victims. Thanks to the Lord guiding me to your blog, & wonderful Dr. Raz, I’m FOUR DAYS MESH FREE!! To God be the glory! Blessings to us all!

    Reply
  3. beth

    Another Great Blog!
    Smart Women Make Changes.. Yes. They sure do.
    Thank you Linda.

    Reply
  4. Debby Nyberg

    Woe be the poor souls who see me pushing a walker at age 60 and ask, “Did you hurt your leg?” That’s when I seize the moment/minute/20 minutes to share my mesh saga. Other times it’s someone from FB who happened to see a posted picture that showed part of a walker or me being pushed in a wheelchair. Gone are the days of kickboxing, pilates and spiked heels. I buy maternity tops at Ross and pleather 1″ platform Mary Janes on the internet. While I move forward I share my story, help in any way I can, and patiently wait for justice and closure.

    Reply

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