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.
I wanted to make up some poem or something to rhyme with Twas the night before Christmas, but I am too nervous to think of something witty so I will just leave my thoughts.
As I sit here in the hotel room looking around thinking and wandering I have to say that well to be honest I never would have imagined that I would be in a situation where I had to travel about 3 hours away for medical treatment or surgery (let alone some who have traveled further for this very same issue) but to be honest where I live have some very good doctors so it is weird that I find myself in this situation.
To be honest again I have to say that I am scared out of my mind and the nerves are on full alert mode. I have to be at the hospital at 5 am that is not long from now. I have so many thoughts running through my head. Will I still be in this same kind od pain? Will the surgery work? Will they be able to get alll the mesh? Will there be any complications? Will anything happen to me?
The only thing I can do is to put it in God’s hands. A dear friend has text me some scriptures that helped her and I am fixing to go read them. I just hope I can sleep tonight. I am feeling a bit nasuasiated.
Well unless I blog again tonight before my surgery I will see you on the flip side.
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
(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
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.
As I sit here almost in tears, well ok, you got me, in tears from this terrible pain I am in, which is worse today, I was thinking of the last few months and then that got me thinking about the last few years. (Again you will know my story, I am just waiting for some things.) It is sad to say that in times like these you really find out who your true friends are and in some ways what kind of family you have. I have been through alot over the last few years, not just with the mesh but with other personal issues, I have to say none of them have ever been with my marriage, thankfully, it seems that in that area it is strong and grows stronger all the time, but issues with family, friends, children. Some really not so good stuff. Of course issues with my health with the pain, and other health issues, which I now know has been caused by the mesh.
However, you really do find out who is true to you. For example, there was this one friend who I thought was my best friend, I thought of her as my best friend and I thought the feeling was mutual. Well something bad was going on and she dropped me, I don’t remember much due to the issues that I was having but when we rekindled our friendship, she accused my mother in law, saying that she would answer my cell phone and the door and would not let her speak to me. I don’t believe that, other friends got to see me and talk to me. My MIL had to sit with me while my hubby was at work during a time for seizures.
Then this same friend, I started to noticed was only there when she needed something, but when I needed something there was always some excuse but I just ignored it or let it slide. Then another personal issue struck and she really went on the wrong side and we stopped talking, in fact I wanted to beat her butt actually, I know not a mature or Christian thing to do but I was so mad over what had happened. However, I let it slide and welcomed her back into my life yet again. By this time I was being warned by so many people, people who knew her when she was in high school. Telling me she had always been like this, to be careful. My TRUE best friend was so worried about me. This other friend, let’s call her RR, well RR started asking me for pain pills and all kinds of things and it got to where my TRUE best friend (LB) did not even want her in her house. RR would call me all the time, and I mean all the time, no matter what time. It did not matter if I was asleep or what I was going through or if I was in pain, it was all about her, to be honest to her, I was almost her only friend because no one wanted to listen to her or believed her, I had my doubts, I thought she was addicted to pain killers but I wanted to be there for her. I was being taken advantage of. Then things started happening, she only came over for certain reason which I will not say to protect others that I love and I was stuck in a hard spot. Then she left her husband and left and did not tell anyone she was leaving not even me. I worried for almost a week until I finally heard from her. She lied to me telling me things about someone that I knew were not true. Then she left me, she left her husband, she left her 15 yr old son with his dad and she took off to another state to be with this guy she never met, had only talked to on the phone and she took her oldest son with her. She was mad at me because I had had enough of her games and lies and started telling people what I knew and what I felt they needed to know and yet I still tried to reach out to her after she left. I called the guy crying begging him to have her call me or give me her number and he told me that she said do not give her number out specifically to me. That hurt, after all we had been through already and I took her back that her. I have even tried contacting her through email, facebook several times and nothing.
My True best friend LB has been so worried about me, first because of RR and the stress I was going through while she was here, it was draining the life out of me, I was getting no sleep and I was having to keep this secret to keep from hurting others I loved. LB was worried of what it might be doing to me, then she was worried when RR left and did not bother calling or texting me to tell me. Then she was worried when she left for good cause she knew I would be hurt. LB has always been one of my very best friends and sisters even before RR came into the picture. I can confide in her anything and she does not tell anyone. We go out to eat lunch (when I was able too) from time to time, we go get pedicures together, she would come over to just talk, hang out, watch movies, whatever. She works nights and sleeps during the day so we have to make time to see each other but we can go weeks without talking and then pick up right where we left off. She is coming to help me clean some this weekend before my surgery and she had even offered to come up and stay with me after my surgery and bring me home, since her car is newer. She is like a second mom to my son. I love her so much.
But y ou can also find friends when you least expect it. When one door closes another door opens. Right after RR left, I found LK, LF, AG, TB and RO, these are all women who are going through the same things that I am with mesh and I have became friends with them. They understand my feelings, they lift me up when I am down, they encourage me. I enjoy their friendships and trust their advice, I honestly feel without them I would not have made it this far.
I also have a friend, a sister in Christ that I wish I could talk to more and visit more and it is actually ashamed that we don’t considering how close we live to each other. We have been talking more lately and I love our talks. She has the most strength and faith in God, I have ever seen and I wish I had that much. Her son is going through so much right now, I don’t know how she does it, well Yes I do, as she mentioned on her blog, it is from God that gets her through. The talks that we have had lately, the little texts, even the ones that checks to see if I got anything from my To Do list done, the encouragement I get from her have all blessed me in ways that I don’t think she will ever know. AV Thank you from t he bottom of my heart for all you do, you are the best mother to your children, a wonderful wife, a wonderful friend and a devout Child of God. I hope we can work on building on friendship.
And then you find friends that you had all along and never even realized it until something happens. MB and CB from the ball field, thanks for your prayers and encouragement and being there. I love you guys.
I could keep writing about this topic, but my point is, be careful, not everyone is really your friend, not everyone is as they might seem and some may have different motives and not from their heart but for their own gain to being your friend. You do not need those. You need friends that will lift you up when needed, be there no matter what storm is going on, laugh and cry with you. And you need to be the same kind of friend, just be careful and don’t let others take advantage of you.
Well I have written enough and I need to get started on some of my To DO list to prepare for surgery.
God Bless you all,
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.
Just because a Doctor says something is right or okay does not always mean it is okay or even good for that matter. This link below describes this as well as the 510K process that the FDA uses to push some mesdical devices through. I think is is horrific the way these things are done. It seems that we are the ones they are doing the testing on.
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.
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,
Forgive me for rambling and repeating me myself. It is late, I am in some major pain and I have been crying since about 4:30 this afternoon. Sorry I have not written in a few days I have really been hurting and just resting, something I should be doing now.
Well as you know I saw the doctor on Thursday and he said the mesh had to come out. I think I mentioned that they were out of network for all insurances and they had to get in-network approval so insurance would cover the surgery.
Well I got a call for the doctors office this afternoon and well our insurance will not budge. We have no out of network benefits and our insurance will not do a gap coverage or any other kind of things they can do to cover and approve the surgery.
So I do not know what I am going to do. We can’t get any loans due to our credit. My husband tells me not to worry abt the money but I can’t let anything happen like us lose our house or something in order for me to try to have this surgery. I could not live with myself if that were to happen.