Desperation

I wake up, it’s dark. Clocks changed and daylight hasn’t dawned. I let my little dog out. Kettle on, green tea bags in the pot. Food for my little furry companion. The house is quiet.

I walk through to the studio. The light on the computer guides me. Keyboard lights up. Emails flood in. Desperation, sadness, anger, suicidal thoughts, pain and anguish. The norm. I look over each one quickly. Those not so desperate I send the link with other links about my mesh removal journey. I go back over and find the ones who I know are on the edge. I read her symptoms, type of mesh or other information if I have it. Clues as who to choose to help. Thank God for my small village of women.

D…… Her medical knowledge invaluable. P…… her wonderful survivor spirit that never gives up. L…… Compassionate and helpful. Always ready to take a phone call. G……. Our newest member, but I note she hasn’t answered any of our group emails in the last few days. Her removal was only early January but she wanted to help. I wonder if this has been too much, too soon. I need to give her a call. Check to see how she is doing. Give her a phone call hug. Four brave women who understand. These mesh survivors still deal with their own fallout of mesh injury but willing to help others in need. A small village of women who speak out and help. I am grateful for who they are.

I read the desperate emails and blog comments. Those I know may not make it without a kind voice on the other end of the line. They’ve fought to get insurance only to be told “Sorry, you cannot go out to UCLA”. More battles, more pain and more desperate anguish. They are nothing but a name and number to others. But they are human. They have or had families, homes and livelihoods until this terrible product they call mesh. They are trying to raise children. Keep their jobs while they suffer in pain so that they hang onto the prize. Medical Insurance.

An hour has past and my tea is cold. Daylight arrived and I didn’t notice. My dog lets me know I have forgotten him. He begs for attention. I rise. I feel the flood. Incontinence is my issue right now. I have to go and change. I heat the tea and hug my dog. I put the terrible thoughts of desperate women out of my head for thirty minutes. I stare through windows where sunshine has arrived. I thank God I am alive.

I struggle at times but I do not need pain killers since my mesh has been removed. My gratefulness of surgeons, who have hands that know how to remove this terrible product, overwhelms me. I am so lucky. I must get back to those emails and give these women hope.

“Please hang in” I type. “Life will get better when it is removed.” But I sadly wonder how many women will fall through the cracks. No one cares……………….

I know there is one simple solution to all this pain. Stop putting mesh in women. Stop this madness and sadness.

I type more notes to women. As I read women’s thoughts, mental notes now are in my head. “I need to write a blog about that. Maybe it will help more women if they know about this?”

A few hours have past. I have forgotten about my own life. There’s never enough time to do it all. I want, I need a vacation. But…. That’s out of the question. A trip to UCLA in a couple of weeks is no pleasure. But then I remind myself. At least I can go. I have hope when so many other women do not. I wonder “What are these mesh manufacturers thinking. When will this greed end…………………………..”

I feel the sadness overwhelm me again. I must stop. Go and take a picture of my daughter doing things I used to do but no longer can. I feel the sun on my back as I hobble around to find her outside. “Careful” I say to myself. Every step must be monitored so that I don’t fall on uneven ground. That is the legacy of my mesh injuries. Injury to my right leg from too long of time where it pulled on my nerves and muscles. Shrinking and causing pain and injury.

But I am alive. I am through Part One of my mesh removal journey. I am forever grateful.

 

8 Comments

  1. patricia buchanan

    Linda, this is so poignant and true to your heart. Thank you for all of your time and energy. I know I am one lucky lady to have happened ont your blog when everything was darkened with the pain and fear of not knowing what was wrong with me. “The truth will set you free” Unfortunately there aren’t many places to get it, but you’re one.

    Reply
  2. a meshed-up nurse

    Linda, thank you for the countless hours you spend helping others through their mesh trauma, while still going through so much yourself. And you are right, those who can make it out to UCLA are the “lucky” ones. We pray for those who cannot, because of financial and insurance reasons, make it there…. Praying for a successful outcome for your upcoming surgery. Hoping that all of the good you’ve done for others comes back to you tenfold….

    Reply
  3. Lisa Pashenee

    Linda, your blog has saved so many of us, and got the information out to women, whose doctors refused to acknowledge that their problem could be the mesh.
    All these women who are injured…what a slap in the face it was to be told that there is nothing wrong with you, or that it is all in your mind, or to just to go home and take some morphine and get your affairs in order!

    What an insult, when we are writhing in pain,
    can’t walk, can’t pee, can’t have a bowel movement, don’t want to live, crying everyday. Dogs at the pound are treated more humanely.

    Your voice has been chosen to reach out to these women with hope, information, and guidance.

    Thank goodness for UCLA! Dr. Larissa Rodriguez saved my life 8-20-12. Everyday I look at my pee, and thank God my nightmare is over.

    But I can’t forget the others, still needing help. Oprah says to “pay it forward” Linda, and that is what you and other survivors have done.
    Thank you for saving lives with your time and your blog.:)

    Reply
  4. Peggy

    I want to wish you good luck in your upcoming surgery and I Hope that what they do for you works! Thank you for all you do to help those of us with mesh issues. You have a big heart!

    Reply
  5. Patricia

    Linda! How can we ever thank you! You are a true angel and inspiration! Your time, dedication and genuine sweet spirit has helped me and so many! I am forever thankful!
    I hate this Mesh! I hate what it’s done to my body and how it’s impacted my life. I’m getting no where fast here but pray for understanding and knowledge to my new doctor on April 1. In the mean time I’m Savin (which is gonna be slow!) for a trip to CA and Dr Raz.
    Thank you again for you and everyone who posts. I read most nights lying in pain as I don’t sleep more than 3 hours. The post both educate and let me know that I’m not alone. I’m often sad but at times I mad, I can’t let this kill me!
    Prayers for each of us in this “club”, that someday this to will pass. Blessings Tricia.

    Reply
  6. lindafromwestvirginia

    We all owe Linda ……..a wonderful lady. I am 6 weeks out of surgery….best thing I ever did….yes it is costly. But ,worth it…I truly don’t think I would have lived more than a couple more years. I still have anger at Drs. Who didn’t care. But, I thank god everyday for Linda……and for my health……not100%,but so much better than I was.My daughters are so happy to see a glimpse of their Mom…..she had been missing for over 2 years. That was one of the worst parts of this whole nightmare..the pain everybody else suffered .

    K

    Reply
  7. paulinedrane

    need my mesh out in severe pain dont want any money. please help me. i am in the state of South Carolina.

    Reply
    1. lavalinda

      Paula if you look at the top of this blog there is a drop down for doctors. I don’t know some but I do know UCLA because Dr. Raz removed all mine.

      Reply

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