Time for a Well Earned Break

It has seemed like a lifetime but It has only been three years and seven months since a mesh bladder sling was put into my body. It has changed my whole world and my outlook on life and those who are supposed to take care of our bodies. I am well aware that there still are very good and caring doctors in this world because some have been involved in my care over the past year. But sadly others turned their backs on me for what I can only assume is that greed is the motive and this has happened around our country and around the world. I would be more conservative and say it could be ignorance driving them to continue to put mesh into women’s bodies, but they ARE aware of the dangers because women are now asking their doctors about the adverts they have been seeing on TV and the reply is “I do not use THAT one”. ‘That one’ is one of many types of mesh that has and still does injure women in the past and still continues to do so to this very day. I know this because one week ago I was contacted by two women in two different States that had a mesh sling put into their bodies last month and both were living in agony and both wondered why their doctors did this to them. Not only that but both asked about the type of sling their doctor was going to use and was assured everything would be fine. Then the women were left to deal with the consequences alone.

I began this blog exactly three years ago when I found my health going downhill. None of my questions were being answered by the doctor who put the sling into me and in fact she did not believe me when I gave her my continuing symptoms. Many of the early blogs I removed because well over a year ago I was told to stay quiet and I had decided to shut down this blog once and for all. It was only when I began reading more and more comments written back then by women who lived in the same kind of twenty four hour daily pain that I did, that I decided to explain to the people who asked me to remain quiet, why I had to leave it up. They agreed it was okay so long as I have kept certain things out of my blog. I have complied and I have continued to share not just my pain but the pain of other women who live worldwide who wanted others to know how mesh can destroy women’s lives. We are now a force to be reckoned with and we all share, one woman at a time to prevent this from being buried. We know that it is important for our daughters, granddaughters and the future generations of women to know the fact that mesh can ruin their life.

As much as I hated writing everything that was so personal that has happened to me because of the sling that is now no longer in my body, I wrote it and shared. Not because I did not want to have my own life as was so stupidly told to me by one woman, but because I did not want thousands of women to have no life at all in the future. I also wanted the world to know that mesh complications do not just go away. Many women live like me. They do not know how many surgeries will be staring at them in the future. They know the life that they once had will never come back again and they don’t know what to do to change. But I know if they accept the fact that their ‘once’ life will never be the same then they can find a way to live again with some meaning.

I am now just six weeks post op from the last surgery and I decided I could no longer live in the world of my bedroom and my injuries. I kicked myself out of my bedroom which had become a haven for the past four months. I decided that although I have restrictions because of my continuing symptoms, I do not have to live in my room in my world of mesh hell. To do so I removed everything but my necessary self cath things I need and most are hidden away. It is hot in Texas and my room has its own air-conditioning, so I turn it off every morning so that I am not tempted to go back there at all during daylight hours. I opened up my studio once again and began going between the place where I create and the couch in the living room when I need to take a break. I spend time with my little dog that missed me so much. I am trying to build a different life with my daughter and enjoy her and the things she is doing. I began working doing something creative that I had thought about for a long time. I am making fairy abodes and furniture just because it uses my imagination and helps my brain cope with the continuing dizziness left by Gentomicin Otoxicity. My thoughts are, if you cannot change something, learn to go around it and change what you do, is my new daily challenge.

I cannot change my injuries and I know there will be more surgeries in my future. However I do not want to think about it every day. I live with self cath and I live with continuous nerve injury pain in my right leg. I also live with vertigo and its affects. BUT I am learning to live again and do what I need to do to become whole again in both mind and spirit.

I am not closing down this blog. I will monitor the comments left to make sure I comply with the instructions to keep this blog available for the women who need it. They can find out here that the pain they have lived with for years is because of a mesh sling. But what I am doing now is taking more time out for me and that means staying away from far too much pain, anger and desolation that mesh causes women. I have to! You cannot listen to terrible stories every day over the phone for three years and read their stories, before you find yourself at breaking point. I need outside input from healthy women who live and enjoy their lives, so that I can find my way back to enjoying mine.

It is not just me who needs this. Any mesh injured woman does too. Once you have had all the mesh removed and any subsequent surgery needed, find out what it is that you really need in your life. Make those changes and get mentally well so that you can be more productive for those you love. Don’t stay immersed in your pain. Find what makes you happy in your ‘new’ life and move forward. Perhaps you can no longer work again. Well as bad as it seems, maybe you can find a passion that involves a something you once loved to do, or take up something you always wanted to do that is less stressful or damaging to your remaining injuries.

I have always enjoyed creativity and time alone and now I sit in my studio without TV or any music and the quiet that surrounds me is music to my ears. I stare out through my studio windows and thank God I am still alive. I don’t know where I will be in one year from now, but the most important thing right now is where I am at this very moment. I am finding happiness.

I will be back from time to time when I know of a treatment that works to help women with their pain written by a mesh injured woman. Some are working on it right now and when the time is right there will be a blog post. In the meantime I am going to enjoy my creativity. Perhaps sew for awhile. Make a few hats, but simply enjoy the life I have at present. Then I know I can be mentally ready for whatever is thrown at me in the future. I hope you can do the same.

I am sixty six years old and before my life is over it is time to live life for awhile…………………

To give you an idea of where I came from after the mesh was put into me, I kept a diary. I did not know what to do or where to turn so I wrote my thoughts down so that I could deal with them. The mesh was put into me on March 9th 2010. I had gone through a second surgery just before I wrote this where the surgeon cut the sling in the center because for nine weeks I was not able to urinate on my own once it was put into my body. I was desperate like many women who come here to this blog. When the surgeon realized my situation was not going to change, she reluctantly agreed to a second surgery to cut a small piece out of the center. I did not know at that time that that was the worst possible thing she could have done. Once the sling is cut it can move and migrate and damage other organs and parts of our bodies. But hindsight and knowledge takes a long time to learn. Now I want women to realize why they need to fight to get out to UCLA as quickly as possible and not do these partial removal surgeries. It can change how well you will do in the future. Since this time I have had three more surgeries to remove the mesh and try to fix the damage it caused. Five surgeries in all! How many more will I need? I do not know.

Wednesday May 19th 2010, eleven weeks after the sling was put in my body. I was doing self cath continuously because my bladder did not know how to work.

My morning thoughts.
Only a few weeks ago I would have got up out of bed and made myself a nice cup of green tea to help me start my day. I would have let my dog out and sat down to watch the morning news and check the weather, before starting my daily chores.

Everything has changed. My nights are long, with constant rising from my bed with a sudden urge to pee. A night light and clock in the bathroom are only small reminders of what I have to do. As I sit on the toilet, the noise of peeing in a hat is different than the noise of peeing in a toilet. When I get up I have to measure and record on a scrap of paper what I have done. After rising and before doing anything else, I put all the paraphernalia on the bed that I will need to catheterize myself. I check that everything is sterile, and then find an angle where I can see what I am doing in a mirror placed between my thighs. I always think to myself “however did I get to this point”.

It was only a few weeks ago when I made the decision to get my life back on track and have the surgery. I had been dragging around for so long with a problem left from my bad reaction to the Ace Inhibitor in June of 2008. My energetic and busy life came crashing down and I became someone I had never been before. I finally reached a point where I was tired of that person and wanted to reinvent myself.

I knew my decision to fix myself could cause me to go bankrupt, but I had to take a chance. If I got my life back I could begin teaching again and help me pay back the money I had saved. I told myself that if I felt whole again, I could conquer anything, but now it’s hard for me to be the optimistic person I was.

Now my life is about how much I pee and how much I take from myself. The numbers don’t look good. I’m taking out almost as much as I pee and sometimes more.

I took a drug (Vesicare) to help stop the spasms when my bladder began working again on its own. I bought myself a new set of problems. The drug dehydrated me so badly and regardless how much water and fluids I took in, I couldn’t pee at all. I did what I always do these days. I read up the side effects and found out that was one of them. I also read that this drug could cause a UTI and that was something I had been battling all through my surgery recovery.

One more time I made a decision to stop taking a drug. I have enough problems and don’t need to invite more. I’ve taken more prescription drugs in the past ten weeks since I had my first surgery, than I have in my entire lifetime. Drugs may help but they can also hurt. I have to listen to what my body is telling me and take my own actions. Two years ago I didn’t do that and wound up in a really big mess.

Where do I go from here? I have no clue. I wonder will I get my life back on track. Will I be able to travel anymore? I had a dream to travel to Ireland once I am well, and now wonder will it ever happen. I honestly don’t know.

These are my starting thoughts of the day. I can look around me and find many women my age that are far worse off and chastise myself for not feeling grateful. However, I thought I was doing the right thing when I had my surgery and now I am filled with buyer’s remorse.

Now I have to pick myself up, brush myself off, smile to the outside world and tackle what is ahead of me.

Before I end this blog I want to say that I could not have made it through these past years without the help of my daughter Kim. I have not been able to drive in more than three years because of right leg pain because it is the leg I would use to press the pedals. It causes me agonizing groin pain when I try. Now I have the gentomicin toxicity, she has taken me everywhere to try to get me back to health. Sad to say nothing works, so now I need her even more. However I try hard to remain independent here at home and do a few things that can help us both. Not a lot I am afraid, but she is grateful for anything I do. I am very lucky because without her I am not sure where I would be and I am truly grateful. I have also met wonderful women who struggle through their own mesh pain and injury and regard them as my friends. I stay in touch with them to see how they are doing with their own lives and do not isolate myself from the world. You need help and support from other women who understand so do not lay in bed afraid to reach out. It could be the best thing for your life.

To join a support group, you can contact Jane Akre at this site. http://meshmedicaldevicenewsdesk.com

 
 

14 Comments

  1. Nancy Mikitka

    Linda, I am happy and saddened at the same time as I read your latest blog posting. I am happy you are focusing on you now. You have helped so many of us to find Dr. Raz and the way to have the awful mesh removed from our bodies. You have shared your very personal story so we could know what can happen on the otherside of mesh removal because of what has happened to you. Thank You for your willingness to share the truth and to not sugar coat the not always lovely outcome from the mesh removal. You are so right when you say, we need to find what can make us happy again regardless of the limitations we may face. None of us knows what tomorrow may bring for us once we have entered the nightmare of mesh, but we do still have choices to make on how we will live inspite of what has happened. I will always keep you in my prayers and count it a priviledge to have come to know you for without my reading your blog…I will still most likely be searching for a surgeon skilled enough to remove my mesh that had been implanted for 9 1/2 years and had been cut 6 months after its implant but left inside of me. I am so very, very grateful to you…my dear friend.

    Reply
  2. Aaron

    I love you, Linda.

    Reply
  3. Teresa R. Jones

    You are the bravest woman I know. In one year you taught me what you know. I am blessed to call you friend. I am blessed to have come to know your sister and to witness the great courage that both of you have. I am better because you reached out to me. Your daughter Kim is excellent and her care of you a standard that you deserve. You and your husband made a remarkable woman in Kim. I am not afraid anymore. I have my truth and I must now cope with it. I love your hats, your fairy adobes and I love you. Mesh left me in a personal hell and then God sent you and you helped me gather myself and my courage, nobody has ever befriended me so quickly and so kindly as you. Always prayers for you going up from Alabama. Love T.

    Reply
  4. Jemima Williams

    My dearest Poppy <3 What can I say? You deserve a rest! You have helped so many of us in this battle. You have not only helped us, you've loved us, educated us and been the 'Mother' that so many of us needed, when times have been bad!
    I am SO proud to call you 'Friend'. If I could ever be grateful for one thing that Mesh has brought me, it has been meeting YOU <3
    Have a good rest, darling lady. Enjoy some 'time-out' with Kim…
    One day, I am going to look upon your face and wrap my arms around you both.
    You have all of my love and blessings for a continued recovery <3
    Thank you, from the bottom of my heart xxxxxxx

    Reply
  5. Sharon Mcbride

    My Dearest friend Linda, I will forever be grateful when I received a phone call from you last November. I was such a mess. A total hysterectomy at the tender age of 19 was just the beginning of my journey. I’ve had well over 10 abdominal surgeries, and was just about to have another if not for you and other mesh angels. I’ve had my good days, and some not so great. I cannot express the gratitude I feel when I think of your gentle persuasion, knowing very well how you choose your words so carefully, knowing that if I was pushed just a bit too far, I may not be here today. Linda, you have me hope, you helped me believe that there is/was another alternative to swinging from the tree in the back yard, I was in so much pain and didn’t no where to turn. I will forever be grateful to you for not giving up on me, instead, you kept pushing, slowly but surely, and because of that, I am writing this note filled with heart felt gratitude. Thank you for you gift of time, knowledge, kindness, compassion and empathy. I return to UCLA next week for my post op visit with Dr. Raz, without you, I’m positive none of this would have happened. That’s the ‘Fairy Magic” you so gently weave in and out of people’s lives. I feel so grateful and blessed for the time we spent together in CA, I was so afraid..Thank you and my two sisters. Thank you for spending time with me in Ca. in June, giving me strength, one more time.You have become a very important part of my journey, and i believe you always will be. Now go , take care of you, hugs to you and Kim
    Best,
    Sharon

    Reply
  6. Pam Sender

    Good for you! I’m so glad you are finally getting on with your life. Best wishes!

    Reply
  7. Barbara

    Thank you sweet lady for all you do. Blessings~

    Reply
  8. CDRR

    Because of you, I knew where to go and how to get there. This blog is a gift to women looking for the best possible treatment. You will never know how many lives you have touched with your generosity. Thank you so much Linda:)

    Reply
  9. brenda

    hello , i had my sling put in back in 2004 ,,I have bladder spams, infection, pain, bloating in stomach,, UTI …miserable all the time,, back to wearing a pad, i ve been to see about 4 different drs. no one wants to help me,, I do have a lawyer,, what do u think.. thanks brenda

    Reply
  10. brenda

    where can i find a dr to undo this sling BRENDA

    Reply
    1. lavalinda

      Brenda go to UCLA and see either Dr. Raz or one of his associates.

      Reply
  11. Aaron

    Thank you for your blog. My wife just had a minisling put in a few months ago and she has been in horrible pain since. Sex is all but gone now and mentally it is taking a toll on us both.

    Tonight we discussed that we need to remove this thing ASAP and get back to her enjoying life. She has not had many of the issues here but the pain is unreal for her. Do you know if she should get better if the sling is removed? After reading your blog I am worried that she will not be able to be out of pain again.

    Reply
    1. lavalinda

      No one can say for sure because until it has been removed and a year has passed, the damage cannot be assessed, but I am now one year past removal and without removal I may have been closer to death. I do not take any pain meds due to it remaining in my body 2 years 7 months before it was removed. But I do know many women who have returned to normal.

      Reply
    2. Melissa

      Aaron, I had the mini arc sling put in about 3 years ago, what you have written pretty much sums up things for me and my husband as well. I hope you and ur wife find some answers soon because this pain is absolutely unreal.

      Reply

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