Broken but Living

Some of the strangest things occur to me from my daily life and I am not sure other people see or think the way I do. Perhaps it is the creative part of my brain that sends me images that others never see. Perhaps it is because I am weird. Who knows? However when these images come to me they create more images that I put into my mind and I wonder about. This happened to me a few days ago.

My daughter had been building me a completely new bathroom while I was at UCLA waiting on the last surgery. By the time I came home, most of it was done, but there were a few tweaks that needed doing. I had to use my new shower and tell her where I wanted things that could help me in my daily life. Such as dispensers for shampoo, conditioner and liquid soap, plus other details. She was in my bathroom working when as she hammered on the wall, one of my resin fairy statues came crashing down. She gathered up the pieces and put them on the counter and came through and told me what had happened. She said perhaps I could glue it back together again. I just smiled. It was an accident and these things happened.

When I saw it, I had to laugh which would be an odd reaction I suppose but sometimes odd reactions come about because life has changed so much. My thoughts were, it was just a statue. I looked at the amount of pieces and saw immediately it was obvious that some were missing. Was I worried? No. I simply looked at it and thought it was as broken as I am. In the end I decided to throw it away but before I sacked it up, I took a photo. Why I have no clue, but the image was in my mind and I took it to remind me of how broken I feel and how broken many women must feel all because of bladder sling mesh. This is that photo.

Her face looks perfect. When you look at her face you don’t see all the broken pieces of her body. All you see is normal. Well that is how we are. Normal to others but inside we are in a mess.

Many of us who have made our way out to UCLA feel very lucky. The mesh is out of our body and we feel we have a reprieve of sorts. We can begin life again and get back to normal. That is what we want more than anything. However, for some of us, inside has much more damage than anyone can see. To everyone around us we look normal. People say “You look good”. Or “I did not expect you to look so well”. We stare at them with politeness thinking “I wish I felt the way I look.”

We try to put on the best face possible to the world around us and yet inside what we can’t see but can feel, keeps our attention. We brush aside those odd pains, but they haunt us. I know my body has a long way to go to heal and allow me to feel more normal. In the meantime, I am so aware of any slight bump my little dog gives me against my pelvic area as he snuggles up to me. That small brush sends a jolt of low grade pain through my pelvic region reminding me I have a long way to go. I can’t see the scars on my insides the way I see the scars from my surgeries on the outside of my body. I can run my fingers across them and know they are healed. But inside it takes a lot longer and the scar tissue that forms can also be a huge problem. It happened after mesh removal and only time will tell will it happen again.

I don’t expect my daughter to understand these thoughts or how I feel after five surgeries and endless doctors visits. I don’t expect anyone to understand the mental toll it has taken on me. I know if I were to speak out to any doctor, the first thing would be to offer me anxiety meds. This is because from the moment I get near a doctor’s office, my BP rises and I have a terrible feeling of dread. I am not sure betrayal by the doctor who put the mesh in me can ever be healed and frankly if any healing can be done, it is because I stay away from all sources and reminders of what has happened to me. I need to get back to living and steer clear of doctors to gain strength not just in my body but also in my mind.

This past week I made changes. I decided I had to get back into the world of living again and find happiness that can outshine my inner mess. That may not sound normal to some, but it is normal to me. So first I decided to move out of my bedroom as my sanctuary and sick room and move myself forward. Everything I had set up temporary for the fascia sling surgery stayed for months in my bedroom overshadowing the things I love. It was time to take those bad memories away and begin new ones.

I am only five weeks post op and sitting for too long is still an issue. But I have a nice pillow on a comfortable office chair in my design studio and I decided to begin sitting at my main frame computer to write and look out from my studio windows. I want life to surround me, not pain and suffering. I know it is not going to happen instantly. There are days I will be laying more on the living room couch that sitting in my studio. But I can hope and dream again and begin working on some of the things that popped into my head as I lay in bed recovering from the last two surgeries. I may have to take it slowly but I can work and see a future. That is how I will heal the broken feelings I have right now.

I’ve been working on it in other ways. I have been faithfully taking supplements to help me heal. I added more than I have taken in the past and I am feeling better. I can’t expect to reap the rewards unless I am faithful to a plan. So I have one and I work at it. Everyone has to find their way back with whatever makes them happy. “No one can do it for you. No one can fight the broken feeling inside you but you.” That is my new motto in life.


These are some of the supplements I now take to help me move forward. These are the ones I take with food but I also take others with water on an empty stomach. Am I aware someone would think this was crazy? Of course I am but I’ve been low before and I worked at coming back through paying attention to what my body needs. Yes food is part of it, but food is not enough at this point.

Frankly I really don’t worry about what anyone else thinks of me. It has become the least important factor in my plan to regain some kind of life that makes me happy. I don’t expect miracles. I know it will take time and diligence to help myself. No one else can do it for me. When I fought to get medical help when I was so sick, I stayed on the phone and fought. It would be nice to turn it over to someone else, but then again who knows your body like you do. Who can tell where the pain is and what needs help, than you? No one! So we can’t spend our days lying in bed feeling sorry for ourselves. We can’t expect those who surround us to understand that broken feeling in our heads and we can’t stay feeling that way. We have to fight to overcome it and fight to live again. That is what I am doing now.

So I have taken those first baby steps to get myself out of a world that is all to do with illness. A sick world where I can lay around and feel sorry for myself. If I don’t then that will become my new normal and I don’t want to stay there. Everyone has to find their own way back and I can’t help them any more than someone else can help me. It comes from within. It’s not easy but it is possible. I just had to take the bull by the horns and change my way of thinking. I will be back again and I will find my new normal that is not all about mesh injuries.

I’ll keep you informed of my progress………………

 

 

11 Comments

  1. sylvia

    Linda, beautifully put. The “new normal.”

    Reply
    1. lavalinda

      Sylvia it is the only way we can find a way back to living again.

      Reply
  2. Aaron

    Well, I know you don’t care much about what others think of you, but I still want to tell you…. I THINK YOU’RE SIMPLY FABULOUS!! Much love.

    Reply
    1. lavalinda

      Thank you.

      Reply
  3. Pamela

    Linda,your amazing!!! I have been in pain since the mesh was put in, that was 4 years ago.Going from doc. To doc. Badder infection after bladder infection,no one had any answers,I thought I was losing my mind! went back to doctor who put mesh in,he said its not the mesh I put in. Anyways long story but in short after losts of researching I found your blog.I cried lots of tears for all the pain so many women had gone through. I said Pam your really not crazy. I will be having my surgery next Thurs. with Dr. Raz,it has been a long road,But because of all the information you have shared I have gotten this far.Thank you for being my angel. keep on doing what your doing.lots of love Pamela.

    Found

    Reply
    1. lavalinda

      Pamela I hope you will do well and life will improve. It is a hard long road for us all.

      Reply
  4. Dawn

    I’ve just broke down in tears when I seem your picture (broken but living)
    That’s so how I feel,
    I wish I had never had this mesh put in I feel I have no life anymore.
    I’m suppose to be having parts of it taken out next month , I’m terrified,

    Any advice or help would mean a lot,
    Many thanks
    Dawn. 39 from Manchester

    Reply
    1. lavalinda

      Dawn I wish I knew a doctor in England who could remove it all but they do not have the experience and they do not recognize the importance of removing the anchors. Sadly they should BNEVER put it into women, but so many doctors still do all over the world. There are support groups as the one on my next blog ‘Taking a well earned break’ and they are women all around the world who try to help each other. Perhaps it will help you to have friends who know your pain.

      Reply
  5. LeeTee

    Linda,
    I love what you do for us, I am sorry for your recent cath complications. I will light a candle for you to heal and no more cath. If you DONT have a risk of bleeding…so close to a surgery, try OTC Cystex plus. It helps when I feel an infection coming on..squashes it. To those out there just discovering the mesh pain, yes doctor after doctor will deny that you have problems with mesh. I believe since the very doctors we see have/or are implanting the mesh to this day. They wont admit that there is a problem, because they are still implanting them and don’t want lawsuits. I was actually referred to a Dr. at ———— Weston fl, who is a paid spokesperson for AMS, mesh implant makers. Another Dr. that some patients claim she removes all on another mesh blog attended functions paid by AMS she is also a paid spokesperson. Google your doctors before going, so far the only reliable place thanks God for Linda blogging it is UCLA. I pray for all of you to make your way to UCLA, the doctors that Linda has named…. or may God provide more trustworthy doctors who have the courage to take it all out. If you are allergic to the sling or it is deteriorating or twisting , then why would you still want any piece left in you? Too many doctors want to “unhook” it and leave it or remove a piece because its too risky or complicated? Think hard about it. Do the math. Please get it all out.

    Reply
  6. maria

    Linda, Just found your blog a day ago. God bless you and everyone else with this nightmare. I had the tvt sling surgery 5 years ago on Oct 13 2008, I’m 56 yrs. old. After reading your blog and other stories, I’ve come to realize I’ve been having many signs along the way, but brushed them off . Recently, I’ve the feeling like a brush with a very warm feeling up there and some upper leg pain and several uti’s. Bearable, but not the best feeling when I change positions or exercise. Feel like its getting worse. I talked to my gynie yesterday who did the sling surgery, he said he hasn’t had anyone complain about his type of mesh sling at all. Didn’t really elaborate on anything. Not much help at all. I want this out of me, but don’t know when to have it done. I’m so angry about this for all of us! Do I make an appt for consultation now? Is it possible for you to email me? Have any of the women had success first time surgery with not a lot of complications after? I would love to know. Thank you.

    Reply
    1. lavalinda

      Maria, The information you are seeking is at the right side of the blog. Yes make the consult appointment now and get in line. Life can and does improve but it takes time. You are still okay and you should recover.

      Reply

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