Just taking a break

I just wanted to let everyone knoe I am taking a break while I rest an recover. This surgery took more out of me than I expected. I will be back posting new blogs soon.

Today is just not a good day.

WOW! Second post from me today. I tell you today, well heck this whole week has not been good, but today I am really not doing good. I am really sleepy, I did not sleep good last night. I am in so much pain that nothing is helping. I have so much still left to do on my To Do list that I can’t seem to make a dent in it and one of them is going to Walmart and I have been putting that off for so long cause it hurts for me to ride in a car and then to even think about shopping…no, but I have no other choice, I have to go at some point today regardless of how I feel to get stuff for the prep before the surgery and things for after the surgery.

Of course, it might do me a bit of good being out, I am tired of being stuck in this house, day in and day out. I am going stir crazy, but that will only be short-lived due to the pain I will suffer for going out. Sigh, the many problems we face with mesh.

I am feeling really bad right now. Bad about myself, feeling like everything is my fault, everything that is wrong is my fault. That I am not a good mom, wife, daughter, friend. That I am a burden to my family and friends. That they should not have to put their life on hold for as long as they have because of me, like I am not worth it. I feel totally worthless and useless. I can’t even get this list stuff done. I am just here, or not here, my mind wanders and as surgery gets close, I find my mind wandering and drifting more and more.

This may well be the most important surgery I may ever have. So much is riding on this surgery and this surgery is no walk in the park, there are some major risks involved with this surgery. I have so many questions running through my mind. Will the surgery work? Will they be able to get all the mesh our? Will I have nerve damage and still be in pain? What will the recovery be like? Will I be in more pain than I am now or less pain during recovery? Will I regret the surgery? What do I do if the surgery does not work or they can’t get all the mesh out?

I just don’t know, part of me don’t even know who I am anymore 😦

The many Feelings from the Pain of Mesh!

(I hope this is not too long a post) Just has the title says, if you have mesh somewhere in your body, the pain from it can cause many faces and many feelings. Sometimes it is like you are a different person altogether even when you don’t mean to be and sometimes it has you thinking in ways you don’t want to think. I know, I am there and have been for a while now. 😦 What’s more is that these feelings and face can change in a flash before you yourself even knows what is happening and thus confusion is just one of the many feeling.

I am having a hard time right and it is because of the faces and feelings that the pain causes. See right now I am feeling like a burden to my family. My hubby is in a bad mood over things not working out the way he had planned and well as you know guys and fixing cars don’t always clash well but I am taking it personally. The reason is because he would not be doing any of this stuff on the car right now if we were not fixing to take it on the road to travel for my surgery. So he would not be in a bad mood, so I feel like it is all my fault and thus a burden. He has had to do almost all of the physical stuff in preparing for my surgery, cleaning the house (although I did clean the kitchen which took me 4 hours and that was doing one counter and sitting down for 20 mins and then I paid for it) but he has to do everything else, the mopping, the cleaning the bathrooms, the bedroom (it looked like a storage room) the vacuuming, all the while he has a full time job and coaches baseball and I feel bad cause I am sitting around like that dutch boy with his finger in the damn. He has to do all the shopping, run all the errands. I feel like a major burden on my family. I feel like I am taking away from my family instead of completing them. I feel like I am not allowing them to move forward, worst of all I feel like I am draining the life out of my husband. The man I love, the man I never want to hurt, I mean I have known him since I was like 11. He is my best friend always has been and always will be, but I am afraid I am hurting him, I am afraid I am hurting my children, especially my youngest, all he has ever known is his mommy is sick or his mommy has to have surgery, his mommy is in pain. That is not a life to grow up with.

Besides feeling like a burden, you feel depression, you feel anger, a deep sense of anger and sometimes you are not even sure who you are angry at. Sometimes you might be angry at yourself for being so naive as to trust people to put this stuff in you. You may feel angry at the situation, you may feel angery because you are stuck in the house while everyone else gets to go to school and work or to the store or to the ball park or to Church and you are stuck on the couch on in your favorite position at the table. And I found out from a dear friend that even if you are a Christian, you may even find that you are angry at God and that it is ok. That God gave us this emotion, if he did not want us to feel it, he would not have given it to us, to just ask for forgiveness for feeling that towards him. Speaking of God, that is something, that I, well I leave that for another post. Just know I am thankful.

You may even feel as if you are grieving or mourning just like you would if someone you knew has died and yet you do not know why. Friend let me tell you I have done this and still do. I can tell you that what you are mourning and grieving is the very life you used to have. You are mourning the loss of what you used to be. I have done this, you miss what you once were and what you once were able to do. You grieve that loss.

All of this can be summed up in the stages of grief. Some say there are 5 stages, some say 7 stages. These are the sames stages that you experience when you loose someone. In my scenario, I have gone with the 7 stages.

1. SHOCK & DENIAL
2. PAIN & GUILT
3. ANGER & BARGAINING
4. “DEPRESSION”, REFLECTION, LONELINESS
5. THE UPWARD TURN
6. RECONSTRUCTION & WORKING THROUGH
7. ACCEPTANCE & HOPE

The link to a more descriptive example to each of these is found here

7 Stages Of Grief

What can I tell you? Well I can tell you that I have gone through all of these and still do. I find that sometimes I go back and forth, sometimes I think I am on step 7 and then go back to step 2, but there is hope no matter what. There are Doctors out there that can remove the mesh, my surgery is just in a few days.

I end with this. I have told you some of how I feel and I have given you information, I hope that this will help you along your journey. If you have any questions, are lonely and afraid please don’t hesitate to contact me.

With love,
KP

This Blog’s For YOU!

Yep, That is right, this blog is for YOU for anyone who might be suffering from vaginal mesh, bladder sling mesh, also known as TVT-O or TVT, anyone with any kind of MESH in them. You know you may not even know you have it in you. You may have had bladder prolapse, or some other form of organ prolapse such as rectum prolapse, vaginal vault prolapse, you might have heard your Dr or a friend say Pelvic Organ Prolapse or no prolapse at all.

Perhaps you were leaking on your self, when you would move, couch, sit or sneeze and this became a problem for you and you went to the your DR. and then fixed you right up! or so you thought? No matter if it was a prolapse or leaking urine, which is Stress Urinary Incontinence or even hernia repair, the fact of the matter is that you have this awful stuff inside of you that can cause havoc in you lives.

It can cause SEVERE pain, sickness/infections, just a myriad of problems and sadly many people are not finding about it until now and many still don’t know and many do not know they even have it in them. We are not on some registry list that sent us an alert notice from the FDA to let us know, Hey this is going on, you might want to get this checked out back when they first saw a problem. They still let this type of mesh on the market and to be used on Humans. It is distasteful!

The purpose of my blog is to be a voice, while at this moment, I can’t do much, I still have my voice and I can use it. I can speak of my problems. I can encourage others. I am not out to do this for money or fame. I am strictly out here to help others that are in my shoes who may think they are alone with no place to turn. This is also a therapeutic tool for me, hoping that by getting my words out that I will feel better and if by doing that, I can help someone than that is just even better.

So if you are one of us that are in pain, have the mesh, maybe you are not sure, just know that you are not alone. You can leave comments here, I read this, you can email me and I will get back to you. I will try to help the best way I can.

Lonely, Jealousy, Failure!

Well here I am, crying, like I do everyday now, hurting like I do everyday, everyday since 2005 it’s just the pain is so much more worse. I should be trying to do so many other things than this blog, but I can’t find the whatever I need to find to do any of it. There are so many things that need to be done before my surgery it is not even funny. I have come to find out that I miss cleaning. Don’t ever take anything for granted, even cleaning because you may come to miss it one day, of course I have always loved to clean. I used to be a little OCD about it, but not anymore and that has been hard to break.

I am crying though because I am jealous and alone, lonely, and feel like I am a baseball widow. I don’t like baseball anymore. It scares me that it is so easy for me to say that, I used to love it, I loved nothing more than being out there cheering my son on, being in the dugout, helping out where ever I could. Going to watch games that my son did not even play in. Cheering on our home team in the LLWS, but not anymore. I don’t like it. Why you ask? Well, because I am always alone thanks to baseball. I mean my husband has to work, I understand that, and my son wants to play ball, I understand that and he wants his dad to coach, so I understand that too, but they are at the ballpark all the time. Yes, sometimes I tell them to go so he does not resent me and sometimes I tell them or him to go because I am in such an ill mood that I feel it is best for no one to be around me but for the most part he just goes and I feel left out and neglected and it is making HATE baseball. I only made it to two of my sons ball games this year….TWO and I feel awful because of that. So I beat myself up because I hate baseball, when I was a softball player for years and my son is just taking after me. I beat myself up because I feel this way when actually my hubby is doing no difference than he does any other year.

Then I am jealous, jealous of my son and my hubby, jealous because they get to go out, jealous because they get to sleep “normal” hours, jealous because they do not know the physical pain I suffer. I can’t even ride in the car. Just riding in the car to my mailbox kills me. I am jealous of other people too for being able to go out and do things. I know the old saying that someone somewhere else has got it worse than I do and frankly I hate that saying because if anyone has ever suffered anything than they know that they saying does not mean a hill of beans to you when you are the one suffering at the moment. Then I beat myself up for being jealous at my own son and my own hubby. I hate that I am jealous of them. I hate that during the night I look at them sleeping at get mad cause they are sleeping.

I feel like a failure. I used to be Supermom, even when I was sick or in pain, I would still clean, cook, do the dishes, get up with my son in the mornings and take him to school. I was in school myself and I would do my school work, when I had a job I would go to work, I worked from home. I would help my son with his schoolwork and projects, make sure he always had lunch money, every fundraiser was done. All the bills got paid on time, the checkbook was kept up with, the computers were always running great (I am a computer whiz and geek), I would be a team mom, handle everything with that, be a room mom and handle everything with that, go to the school for everything event that took place, I did this with my older son as well, who will be 20 tomorrow..wow. Now I am on the couch, I can’t clean, cook, the bills are getting paid late, I can’t work, thank God I graduated last year or I would not be able to do that. I can’t take my son to school, heck, I can’t even get up with him in the mornings, he has to remind several times about his lunch money, the computers don’t always run top notch, we don’t even have a check register anymore, I am not up at the school all the time, I was team mom but I had to have help from my hubby to do things. I can’t even think like I used to. I feel like a complete failure because I can’t do all the things I used to do.

Thoughts

I am so glad that I finally got this blog started and going. It took me a long time to do this due to the pain. I had the blog name for over a month and slowly setting it up on days I felt like good enough that I thought I could, but now I can blog from my phone, tablet, another computer, anywhere, so it gives me more freedom. I am so happy for that, and I wanted so much to have it up and going before my surgery so that I could post from my phone, I knew it would be easier that way.

I want to tell my story from start to where I am now and I will, it will just take me time, it is rather long, let’s just say that my story technically begins in 2004 although I have been dealing with the mesh since 2005. I will get my story on here but for now I am trying to focus on my surgery and it is hard enough to focus on that when I feel the way I feel.

In a sense I am writing this for me, to help me let out my frustrations but more than anything I want this to be read by other women even husbands, friends, you name it, who might have mesh, know someone who might have the mesh or who might be faced with the decision. I want them to read it to know that you are not ALONE is this world, I thought I was until I met a group of very nice friends who were in the same condition I was, I know how lonely you can feel and I too, still feel lonely, but you are not alone. Also I want anyone reading this who might be faced with this decision to get mesh to know that it is awful stuff and that there are alternatives.

So that is my MAIN wish for writing this blog and if I can help just one person, then my wish will be fulfilled.

Love to all,

KP

A OneNote Journal entry – March 5th 2012

I really did not know what to name today’s post. I just can’t think. the pain is just unbearable today and there is no rhyme or reason for it. Some days the pain is bad, then really bad, then unbearable. Sometimes I think my body just hates. I am starting to get really depressed. The pain has really gotten worse in the past few weeks to the point of it being unbearable all day everyday. I just about can’t do anything. It hurts to sit too long, it hurts to stand, it hurts to walk, I can’t drive, it hurts to ride anywhere, so I basically don’t leave my house and for the most part, I cry all day. Even my husband has to help me when I showering and I hate that, because I hate him seeing me with no clothes on. Why you ask? Well as you read before. We can’t have sex so I don’t want him to see me without clothes. I don’t think it is fair to him. Of course I don’t feel like none of this is fair to him or my family but they are all sticking through it with me.

I wish I could do simple things, I wish I could clean my house, but that is hard work. Let me tell you something now. Don’t take anything for granted, even cleaning cause you will actually miss it if you can’t do it anymore. Believe me. I mean I am not the type of person to lay around all day, I like to be moving to be doing something and I can’t. This has basically crippled me. I was listening to a lady over the internet and she called us Pelvic cripples and I could not have said it better myself. I finally had to break down and get a handicap sticker and I got a prescription for a walker, I really did not want to do either of those because I felt as if I am admitting defeat and I tried for so long to fight this, I am tired of fighting. I mean this has been going on for years and after a while the pain really starts to get to you physically, mentally and emotionally.

I mean it really sucks when you are stuck in this house with no where to go and all your friends work. You feel like you are alone even though deep down you know you are not alone. Sometimes you get lonely and just cry and sometimes you get angry and want to throw things and sometimes you have this stupid look on your face because you really do not know what to do. It is an awful, helpless feeling.

Well I have sit here long enough today and need to go eat so I can take some pain meds. If you are in my shoes, I know how you feel! If your not, count your blessings, take nothing for granted.

Whyare we here?

Well since you made it this far, you might be wondering why you are here. Well normally I would say you were here because you clicked a link and it brought you here and you just stayed to read because I am charming, witty and funny…lol. Sadly, that is probably not the case. You are more than likely here because you or someone you know and love either is going through problems right now due to this transvaginal mesh or is considering having surgery for Prolapse and you are trying to find more information or trying to find out you are not alone. So basically to sum it up you are here due to the FDA and MESH.

Why do I say the FDA? Well simple, they started this back in 2008 when they issues the first warning about the mesh. It was on October 20, 2008 when the FDA first sent out an alert to healthcare practitioners concerning the possible problems with the mesh.

It starts out by stating that this is to alert you to complications with transvaginal placement of surgical mesh to treat POP and Stress Urinary Incontinence, it also states that over the past THREE years, the FDA has received OVER 1,000 reports from NINE mesh manufacturers.

I will not go into the entire release but you can read it here:
http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/PublicHealthNotifications/ucm061976.htm

Now keep in mind this was in 2008, and they said they have had more than 1,000 reports in the past 3 years, that would be since 2005 and it is now 2011 almost 2012. It makes me wonder how many women were out there between 2005 and 2008 who had problems due to mesh and did not know, like myself.

Then according to what I have read and found, there was no other release from the FDA until July 13, 2011, I may be wrong about this and if I am please let me know.

This release was addressed to Healthcare providers who implant the mesh, healthcare providers who are involved with the care of patients with the mesh and to patients who are considering mesh or have received the mesh. It talks about the 2008 release and different other topics and things to do and consider, you can read that here:
http://www.fda.gov/medicaldevices/safety/alertsandnotices/publichealthnotifications/default.htm

Now if you ask me, that is a big time jump from 2008 to 2011, what were they doing up there at the FDA? More importantly how many women were suffering (just like me) because they had no idea that the mesh were the root of their problems. I have been having problems since 2005, how many more out there have been going this long, not knowing. Yes, I know there is no “actual database” that keeps track of the women who had the mesh implants so they could be notified, but it seems that if this FDA alert was sent out to who it stated it was for, then there should have been copies in all doctors offices on the tables with the magazines, all doctors should have told women about it. You have to fill out a medical history when you see your doctor, if you fill it out correctly then that doctor should know that you had this type of surgery. More importantly your doctor that did the mesh, if you are still seeing that doctor should have told you about it. It should be on the news, not a commercial you see for a lawyer about it. That is the way I found out about and that is not a good way to find out about it.

Some doctors are even claiming that their mesh, the mesh they used are not the mesh that is causing problems. Do they not understand that it is ALL MESH, that every mesh out there is under scrutiny and is causing problems left and right. That just because the mesh they used is not on the recall list yet, does not mean it is not causing problems. It should not matter if they feel their mesh is not involved or not, they still should inform their patients of this and have fliers out in the lobby. Am I wrong?

Introduction

Why am I all meshed up you ask? Well I will tell you, it is because some idiots want to do a short cut clearance on a medical device that they put in my body back in 2005, just to get it on the market. Yep, transvaginal Mesh, TVT-O, OH, the disaster of my life.

They were suppose to make me better, make be able to live again, be able to enjoy my life, instead it brought me pain, severe pelvic pain, vaginal pain, surgery for erosion, trigger point injections in areas where no women should have to have a shot, no sex life, instead I get a massage from my hubby that hurts like hell just so we can try to get the pain to go away. Peeing when I laugh, sneeze or move and nights of wearing those uncomfortable depends night after night. Missing out on my son’s ballgames and enjoying his life and my son missing out on his mommy being a mommy.

I just don’t understand. This was suppose to fix me, it was suppose to make me better and instead all it did was make it worse, and after all this time I am just finding out about it, Well I just found out that it was the mesh causing my problems late last year, I had no idea and what is worse is I had to find out about it through a commercial of all things, I feel that is wrong. Is it just me or is there something wrong here?

As I sit here and think about the fact that I am starting this blog I have to wonder to myself if mankind has gotten so money crazed that it no longer matters what the outcome of something might be as long as their pockets are full at the end of the day. If this is the case, then the world has gone to a very sad place. A place that people, health and life no longer matter, just how much money a person can make, who has the biggest house, the best car, the most well-dressed family. After all money is the root of all evil! It just seems to me that money should not be more important than someone’s health and life but I guess I am naive and just do not want to admit it.

So here I sit, a 37 year old, who has to wear depends night after night. Who has to be in pain day after day, who has to sit back and watch her husband and her son go to ballgames while I sit home in pain, who can no longer go outside and play catch or basketball with my son. Who can barely sit on the floor (Or anywhere for that matter) long enough to play a game with her family, who can’t have sexual and intimate relationships with my husband, who can’t cook and clean like I used to and now my house is not as clean as I would like, who can barely drive to go anywhere. Who is now a prisoner in her own home, all because I am all MESHED UP!