Mesh-A Page from One Woman’s Journal

I just received a very poignant page out of one woman’s journal of daily suffering because of medical mesh.  She will remain nameless but her struggle is that of thousands of women.  This woman is far too young to have been living with the complications of mesh in her body for many years.  When it continues through years, it bankrupts family, not just with finances but with the never ending care.  Husband’s often leave.  Children find escape from the house where a mother is always sick.  A mother that can never join in their special activities.  Life goes on for everyone but the woman herself.  Holidays come and go.  Children’s school events.  Years go by with the woman living like a live ghost in her own house.  Now read her feelings.

“Some days, well most days that is, I feel like I just want to lay down and die.  It would just be so much easier than dealing with this. Than being in pain every minute of every single day.  Easier than never feeling well, than being left alone, than watching your family go out you having stay home, easier than all the tears you shed.  Easier than the feeling of the huge you burden you feel like you are and the huge strain that you feel like you put on your family and you think it will be easier on them as well. No more money on Drs, and tests and medicines. No more worrying about you all the time. No more constant listening to you complain or cry. No more seeing your in pain.

 People say you are selfish when to think of feel this way – and I used to be one of those – until now, that is. I get it!  You are not only thinking about yourself but you are thinking about your family members, you know it will be hard on them if something should happen to you but you know as with everything, life will go on and they will heal.  You start to think that they will be free.  I mean if you think about it, I am holding my family up.  I am helping them go broke.  Breaking it down, it is about 300 a month on my regular monthly Doctor appointments and medicines.  That does not count money for extra test or if I get sick, or special needed items that I might need from month to month.  That does not include 60.00 a week should I choose to see a counselor, or another 35.00 a week should I choose to see a physical therapist.  Then if you add in the costs that my husband looses in vacation or sick leave when he has to take me to said appointment, or because he has to be late to work everyday to take our child to school or if he has to come home early because I am having an extra super duper bad day and can’t even take care of myself.  Some could say those could be opportunity costs.  If so then there are a lot of those and either way you loose money on that.  Our credit has already been ruined due to bankruptcy once due to MY medical bills  and now I can’t contribute except to take money away.

I need a lot more attention and care and if I was not here then my family would be free of that.  Free of worry.  Free of stress.  Free of having to take care of me or the fear of having to leave me.  It would work out for the entire of family.

So now I understand, I understand the how and the why someone would choose to end their life. I know that not everyone is being “selfish” when they choose this. Yes, sure some maybe are being selfish and yes you can look at it like everyone who does it is selfish cause that person does not want to feel pain anymore or does not want to live with the illness anymore. However, on a more deeper level, I think that don’t want to put their family through any of it anymore also. At least that is they way I feel, it may sound strange and crazy but it is the way I feel.

The questions is: How do you move past these feeling? How do you survive and keep going, keep fighting? Especially when you are under 40 years of age and you have already suffered so much and for almost 8 to 9 years if you really get into it and you can’t hardly walk, can’t barely sit, can only lay on one side, so after a while that side starts to kill you and then you basically have no where to go, no where to lay, you don’t know what to do. Nothing makes the pain go away and you just can’t see the light at the end of the tunnel.

The Question: How do you live?”

This woman assures me that she will not kill herself.  She loves her husband and her children.  She wants to live and yet she does not know how.

I read something this morning by a woman who lives in another country other than the U.S.  She said she sometimes she felt that if she lived in the U.S. she would be able to go to Dr. Raz at UCLA like American women have done.  I wish it were that simple.  The woman who wrote this diary does live in the U.S.  I live in the U.S. as well and had to wait living in pain for two years and seven months until my Social Security began.  The woman who helps me with this blog lives in the U.S. and is in terrible pain every day and is crippled by mesh.  Her journey begins every morning trying to get herself up and walking so that she can go to work to pay her insurance to get the mesh out in January.  Insurance that rarely pays more than 80%.  Who pays the rest you may wonder.  Most women file bankruptcy.  They have no choice.  Insurance that American women have to fight and argue with to send them to a doctor out of State.  All this while she tries hard to raise her children and be a wife to her husband.

Every day women lay in bed and cry themselves to sleep because of terrible, never ending pain.  And they all ask themselves “How do I live”.

 

4 Comments

  1. Lisa Pashenee

    I am 67 days healed now by Dr. Larissa Rodriguez at ucla, who did a FULL mesh removal & even though I am pain free now, I will never forget the pain, the crying, the mental anguish as my abdomen would seize up again My bladder would start pulsating incessantly, like no normal bladder infection, every 3-7 days at the end.
    I felt like I was dying. I asked my 3 best friends to help my husband raise my 12 yr old if I died from this, I started making a list of things to wrap up before death, my will, paperwork etc. the pain is that bad. The doctors deny your pain, tell you it is not the mesh, or operate on you and fail, then blow you off & tell you there is nothing more they physically can do, when you know they could refer you to ucla if they wanted to. Ucla does mesh everyday, all day, Dr. Raz, Dr. Rodriguez, & Dr. Kim. Unfortunately, a lot of women do not have the money or their insurance won’t refer out, or they are single with no one to help them. If I had $$$, I would help someone get the surgery.
    It is insane, that so many thousands of women are suffering, & the FDA is still allowing it to be put in women, shame on them.
    I bet they tell their wives, daughters, sisters & friends not to get the mesh!!! Remember Hitler? How he just kept hurting & killing people, & no one would stop him? It’s time to tell the FDA to recall the mesh & do it NOW, or they can hold themselves accountable for all the women who couldn’t take the pain anymore. Women have already died from mesh.

    Reply
    1. lavalinda

      This is why I keep this blog. I have to. This is happening world wide and women stop living. Why?…………

      Reply
  2. DebC

    Linda, thanks for sharing this very personal, very real journal page of whomever it belongs to. And please give a big thank you to her as well. I’ve been having a rough week myself, crying or trying not to more often than not it feels like. Either from pain, but also frustration & just feeling depressed. Even though I have an end in sight (with my surgery scheduled w/Dr. Raz in january) I could still relate to this journal entry &

    Reply
    1. lavalinda

      Deb I know your heartache needed some release. I remember the night time pain spans were so difficult and I beat it out on my keyboard. I felt so lonely. I can’t promise you will be totally well after mesh removal by Dr. Raz. It’s only been two and a half weeks for me and the injury in my leg has not gone away. There is a difference. I am mesh free. I do stand a chance of healing from now on. While it was in me my leg felt like it belonged to someone else. A giant vise wrapped around it and at times I wanted my leg gone. The nerve pain shot into my hip, back and down to my foot and I could not walk without a stick.
      My daughter is grown up so I don’t have young children who need me for their special occassions and holidays. However my burden is her burden. I often feel like a dead weight. I hope I will continue to do better but only time will tell.

      Mesh doesn’t just destroy our lives, it destroys family life. When the mesh manufacturers say it is rare, they do not hear all the stories I hear. It is not personal to them. It is to us.

      Reply

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