Mesh, not just for Fishing anymore!

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,

KP

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.

Well I had to really rest up have driving for 2.5 hours being at the dr for about 2.5 hours and then driving home for about 2.5 hours. That was a long, hard, painful and exhausting day! I am certainly glad it is behind me. The Dr was great as was in office staff, they were very kind and caring and really took the time with you. I talked to the Dr first then he did the exam, the we talked some more.

He said that the mesh was too tight around my muscles, ligaments and nerves and that the mesh was actually bunched up. He said that during the exam and this hurt like all get out that he could pull on the mesh. He said that he was not sure why but when they repaired my vaginal vault prolapse they did so with double mesh. He said that he did not think the TVTO was causing the problems because the pain in my legs are in the back and outsides area and not in the inside area and I am not sore in the side area either. He has suggested removing the anterior and posterior vaginal mesh and possible removing the TVT-O, he said it depends on what things look like when they get in there that sometime the mesh are all tied together and he has to remove it. He said he has to remove all the mesh plus all the sutures that are there.

He did say that if I had any nerve damage he can’t say if this will ease my pain or even make it go away, or allow me to be able to sit, stand and walk without pain or if I will be able to have sex. It depends on the nerves that were damaged and it could take up to 6 months before we know for sure. But he said I basically had 2 options, I could continue in this horrific pain I am in now and do or try nothing or I could take my chances on the surgery and hope for the best.Either decision scares me so I don’t really feel like I have much of a choice so we are going forward with the surgery. First thing first we have to get insurance to approve it. The Dr is out of network and we have to get in network approval first so they are working on that so it is a waiting game at this point. I also have to get medical clearance from my Dr, which will not be a problem.

In a way I feel like all of this is moving way too fast and I have not had time to think about any of it. Then again the longer we wait the more I do think and the more scared and nervous I get. I am really scared of going through this surgery and it not fixing anything and me still being the way I am now. I mean I really do not want to go through all this if it will not fix me. I also know that this is a very risky surgery so of course I am scared of having it but I really don’t see any other options, nothing we are doing is helping anymore.

I just hope insurance will approve it so I can go ahead and have it and get it over with, if not I will be going crazy for one until I hear from them about the insurance and then if they don’t approve I will be going crazy about how to pay for the surgery. I am already going crazy as it is. And just sitting her typing this, I am already hurting so bad I can’t stand it and I have to eat before I take my pain meds and I am not hungry right now. Oh well, I guess the waiting is the worst part and there is nothing we can do to speed up the process. I just hope I don’t lose my mind before then or worse Chicken out.

I just can’t believe how scared, nervous and anxious I am about a doctors appointment. I don’t think I have ever been this scare of a doctors appointment in my life. There are so many thoughts running through my mind. What if there I can’t handle the ride there? What if I can’t handle the exam? What if I can’t handle the ride home? What if something is wrong and they have to do surgery now? What if they tell me they can’t help me? What if they tell me they can help me but then it does not work or worse makes things worse.

I mean I know you can’t live your life in the “what ifs” but when you are dealing with something like this it is hard. This is very real, very painful and very devastating and sometimes you second guess yourself on the decisions you make cause you are never really sure what is the best decision to make. There are just some many things that could go wrong.

I had this surgery in 2005. The mesh was put in on January 18 2005 and ever since that day things have just gone down hill. I had mesh revision surgery on February 6 2006 and still things went down hill. Since 2007 they started going down faster and then in the past year it has just taken a downhill slide at like the speed of light it seems. I am going to a pain clinic and on pretty strong pain meds but they don’t seem to be helping so they upped the dose and now I feel dopey and groggy and I hate that feeling.

I don’t know…I don’t know what I am doing anymore. Hopefully I will get some answers tomorrow. I am not getting my hopes up though. These meds are really making me sleepy so I am gonna go. I will update when I can soon about the appointment.

KP

WOW! The past few days have really been hard for me.Monday I was in a great deal of pain and I think I cried all day and then of course I did not sleep well. I never do, the pain wakes me up. I hate the constant pain and sometimes the pain is so bad I think I would rather be in labor. The mesh stuff is really scary too because if you have a new pain down there you wonder to yourself if something happened, if something is wrong or different. Of course I know this does not help me any but you can’t help but wonder about that stuff, there are so many things that can happen or go wrong. I mean I have already had mesh revision surgery before, if it happened before it can happen again. I was able to go (thanks to my wonderful husband) and get me a walker after he got off work, so that is out of the way. I can breath a little easier now knowing that I have something to help me get around a little better when I need it and it has a seat so if I need to sit right then and there I can. That is cool cause now I don’t have to think well should I sit on the floor and then wonder how I am gonna get up by myself or try to make it to a chair.

Tuesday was an ok day, I had pain of course, there is not a day I don’t have pain, some days are a little better than others. I watched a few movies. Then tried to clean house a little bit. Well all that did was make me upset and piss me off because I was not able to do it.

I found a DR a few hours a way that might be able to remove the mesh. From what I hear they are really good Drs and have been successful in this surgery. I called them on Monday and I have an appointment TOMORROW! So I had to spend a good deal of time filling out online paperwork for them yesterday and by the time I got done I was in so much pain from sitting it was not even funny.

I am really nervous, anxious and scare about this Dr. I am scared I will not be able to make the ride there. I am scared they will not be able to help me. I am scared to the exam and anyone who has this problem knows just how bad these exams hurt. I am scared something might be wrong and I might need surgery like now. I am scared that they will say they can help me and then the surgery does not work (as that is always a possibility). There are just so many things running through my head right now and I am in so much pain that it is not helping the matter either.

I am trying to decide what I should do, if I should pack in case something is wrong or after riding all that way (about 3 hrs) and then exam, me not being able to make the ride back and we have to stay somewhere. My son is taken care of, so I am not worried about him thanks to my best friend but what do I do about me and my hubby. I just don’t know. I am also scared of not making it through any surgeries I might have to have, so maybe that is making my nervous, being anxious and scared worse since I don’t know what will happen tomorrow. I mean there is a reason why I went from almost tolerable pain everyday to the most intolerable pain I have ever have just overnight. I don’t know.

Then there is the money. The Drs are out of network for our insurance and we found our we have no out of network benefits, so the first appointment is pretty expensive. So I don’t know what we are gonna do there. Oh well, I am starting to hurt worse so I need to stretch out. I hope everyone is Meshville is having an ok day so far

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.

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