Setting the Records Straight
Last September a new friend wrote a story about me on Medical Mesh News Desk. Aaron is a sweet kind young woman whose mother is also mesh injured. She was feeling very sad when we met the first time because she felt she had lost the mother she had always known. Mesh pain and complications had claimed her mother’s life as she once knew it.
When Aaron first came to see me she told me about her loss. The loss of the mother she had always known that was now bed ridden in horrible pain. She told me how much she wanted to help other mesh injured women because she realized how bad this was. She spent a few hours with me here at my home and we spoke of the many things that had happened to mesh injured women around the world. She poured her heart out and was very sad. I told her to find another way to help others because the mesh injured world was such a sad place. I felt for someone as young as her, it was not a world to delve into. Life is hard enough without all this sadness.
I showed her my art and how I had to drag myself out of the sadness of my own injuries as well as other women’s sadness. She was fascinated with my fairy art and told me she would love to learn how to make a fairy house. I offered to teach her and she took me up on the offer. She came back to my home soon after with her husband and she spent the day with me and my daughter. My daughter cooked great meals and we visited as well as I sat while she began making her first fairy house. It was a long day for me but I was happy to give her a gift that cost me no money. The gift of creativity. I spent the next two days on my couch as sitting that long in one day had been so difficult.
She took many photos and she told me she liked keeping a diary so I understood why. I didn’t know that she planned on writing a story about me and it was never mentioned beforehand. I found out later when she told me and the story went up on Medical Mesh News Desk. I wish she had told me beforehand because I would have pulled out the things I used to self cath. The gadget I use to pull on a pair of socks. I would have shown her my broken down sandals that I wear all the time because I cannot put on a pair of nice shoes. But of course that would not have been a very nice story.
Aaron wrote a lovely story but because she is not mesh injured she doesn’t understand what my life is really like. After I read the story I sat down and wrote the following. I sent it to her and the other ladies who help me. They do understand because they too are mesh injured. It made Aaron very upset because she felt like she did not do my story justice. She asked if she should change things. I did not want to upset her so I said no. I knew she did her best with what she could see.
Unless you walk in my shoes you cannot understand. I don’t pretend to understand the pain other women have that I don’t. The last blog I wrote I used a mesh injured woman’s words that she wrote herself. This is because her injuries are different than mine and I wanted her to have a voice. Every mesh injured woman should have a voice and be able to speak the truth of her injuries. Most don’t because they are afraid of reprisals. That is why I let them speak here without using their name.
This is what I sent Aaron the day after the story was released. I want you the mesh injured woman to know the truth because by not speaking out I am not doing you justice. You deserve justice.
Life is not a Fairytale
I appreciated Aaron’s story so much because she painted a lovely picture with words that made my world look beautiful. But it is a far cry from it.
Every day I get asked a simple question. “How are you?” I give simple answers. I am fine or I am doing better. You see to get through my day I do not want to think about all the issues, let alone write them down. So I get rid of the questions as quickly as possible so that I don’t have to dwell on misery. I wish well-meaning people just wouldn’t ask me how I am. I’d rather avoid it.
This morning I was up at five, lights full on, doing self cath. Not the first time during the night I may add. I closed my eyes as I felt it leave my body because I was tired and it was a relief. Retention is hell. It causes me pain because the nerves in my bladder no longer respond to let me know when I fill up.
I can imagine my bladder as being this rough, rubbery balloon that is no longer soft and pliable. I know this because it is covered in scar tissue. A bladder is a balloon that stretches as it fills up. Mine doesn’t. It is now half of the normal size which is why I have to go to the bathroom a lot and self cath when I can’t get it out.
When I got through doing self cath, I washed everything up and cleared stuff away. It takes 20 to 30 mins according to the event. Often it is because I am so tired, I lay there after emptying with my eyes closed, trying to get myself up to clear away. I just want to sleep and I cannot remember a good night’s sleep in a long time.
I finally crawled back in bed; put a soft pillow between my knees to try to get comfortable. I cannot sleep without that pillow or I feel pain. If I am lucky I will go back to sleep in thirty minutes, more from exhaustion. But this morning I couldn’t because my right foot was on fire.
Ants had bitten that foot a couple of days ago and ant bites are extremely bad for me. They come up in nasty puss filled bumps and itch for days. Normally I would put cream on them and it would settle enough for me to sleep. But this is my right foot. I can’t reach my right foot because of my mesh injuries so I spray it to help cool it down and stop the itching.
I can easily reach my left foot so my left foot is always neatly groomed and toenails trimmed. But I often have swollen toes or cuts where I have walked into things as I swagger around the house. My right foot is riddled with broken nails where I have stumbled into something because of the vertigo I gained after gentomicin ototoxicity. Yes another handle that sounds ridiculous. A drug that saved me from the serious infection psuedomonous, left me living like a drunk person. My brain and eyes do not work together.
I still cannot wear shoes other than slip on sandals because not only can I not get them on, I can’t get them off. Socks? Forget it. In winter I wear warm house shoes that I slip on, no backs. I cannot bend forward to pull them on or I would be in absolute agony in my groin and pelvic area.
So my normal broken gait from the right leg injury is not too noticeable when I add my drunken movements. You would not know for the most part unless I told you because I am good at trying to act normal.
Normal…….. What is normal anyway? I choose what I do each day because I have to decide if I want pain or not. Well more pain I should say. If I bend to vacuum, I can last maybe ten minutes and then have to lie out to ease my mangled insides. Yes mangled. You can’t keep pulling our insides out on an operating table to repair them and not wind up with more issues. So that becomes normal.
Pain….. You just have to learn to deal with it because it too is normal.
I tried balance therapy to deal with my otoxicity. At that time I was sure it was only a matter of time before the vertigo would go away. The lady who did the therapy had never known anyone with mesh injuries nor gentomicin otoxicity. But she was sure her therapy would help my brain get used to vertigo. The first session not bad. Second left me in agony. I had to walk backwards without holding onto anything with my eyes closed. Disaster. Taking a step back always makes me wince with pain. Taking many, left me sick to my stomach and we could not finish the session. When we left my daughter planned on taking me by a store. I could not do it, so we came home. That was the end of balance therapy.
I am working on teaching my brain to deal with it by doing things I normally would do, but in reason. I don’t think you actually ever get used to it, but the idea is to fear it less.
Luckily I found a group of people who also deal with gentomicin ototoxicity and they are called The Wobblers. I laughed when I heard the name because it aptly describes how we walk. We are constantly trying to find a balancing point. These people told me the truth. No, this type of otoxicity does not get better and one woman said she has had it since 1982. Around the house I do okay to walk because the lighting is not too bright and I know where everything is in case I lose my balance. But walking outside in broad daylight is different.
My daughter often laughs when she watches me walk when we are out. She isn’t being mean, I just look ridiculous at times. Bright light or too much dark is the worse time so I need something to hold onto with both hands. A grocery store push cart is handy to get across the parking lot. I have a disabled parking sticker to park near a store, but a short distance is miles when you have extreme vertigo. They never leave carts by the handicapped parking places either. Healthy people clear them away and we have to figure out how to get into the store.
I cannot drive at all anymore. It was already bad with the right leg pain because we live too far from a store and I am afraid I would have to call my daughter up and say “Come and get me and the car”. I am enough of a problem already. But now, no one would want someone like me on a highway for fear of what I would do as I move my head and my eyes cannot keep up. So I am so thankful my daughter takes me wherever I need to go.
I am trying hard to fill my life with the positive and reject the negative so I can be happier and accepting what I do have and not dwell on what I don’t. There are many things I can no longer do but I concentrate on things I can do. Well, the rest just gets put aside and ignored. That is the depth of my life now.
I don’t look forward because I know I need another surgery. I live for one day at a time.
I don’t want anyone feeling sorry for me because I am actually a very positive and happy person. I know I am lucky and it could be a lot worse. Many women can’t even do a few of the things I do because they cannot sit because of nerve damage. I can and that makes me feel lucky.
I am also lucky because I have someone here who lives with me. My daughter. I don’t bother her much because my independence is so important. I hate asking her to cut my toenails or check my right foot for an injury. Independence means I move my body as much as possible instead of dying in bed. I am alive and want to live.
So my new life is full of pain, ups and downs but I am grateful for every day I am given on this earth and I will make use of it for myself and for good. This is my fairytale life.
If you did not read it, this was the story Aaron wrote. I know she means well but she cannot understand what mesh injuries are like, no more than I can understand the suffering of others with injuries different to mine. http://meshmedicaldevicenewsdesk.com/patient-profiles/the-faces-of-mesh-a-fairy-tale-and-a-true-story-an-update-on-linda-kilpatrick