I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Mesh is “meshing” me up badly…

on May 17, 2012

I havent written for a bit as I’ve been thinking about the course of my life as it is and having somewhat of a struggle with accepting where I am at.

I never in a million years thought this is what my life would be like at this age. You can call it a pity party or a feeling sorry for myself week or what ever you want, but to me it is watching my life spiral out of control, a slow painful spiral downward to god only  knows where. I have noticed a significant decline in my health over the past few months and more so in the past few weeks.

I used to have a few good days or even a good week in a row and then I would have a few bad days…not ideal but manageable. Now I’ve noticed that my good days are few and far between and even on the good days I have to really pace myself because if I over do it I will end up on the couch for the next 3-5 days.  That was also not ideal but manageable.

That has now been replaced by a good day here and there in a 2 week span and the rest are uncomfortable, painful days filled with a lot of anxiety and panic attack issues. The anxiety level has noticeably increased in the past 4 weeks and I’m not sure how or why they have become a part of my everyday life. Only 4 weeks ago they were maybe once or twice a week and now they are daily and sometimes more than once or twice a day. I have also started having “night terrors”…these are horrendous, you wake up and try to get up but it feels like someone is on your chest holding you down, you literally can’t lift your head off the pillow. It is terrifying. I discussed it with my GP and he said that although I “feel” like I am awake, I’m actually not. I think all of these symptoms are because my body is under attack on a daily basis from the mesh that has taken up residence in my pelvic area. This is only an assumption on my part, due in fact to the medical profession not wanting to actually come out and say, “yes, the mesh is messing you up”.

I am involved with a group of people I liken to my second family…they “get” me on the good days, the bad days and everything in between, just as I “get” them. We have a bond that is unbreakable as  we all go through our daily trials and tribulations. I don’t feel like I am “whining” when I spew off my disgust at everyone from Doctors to Manufacturer’s who  clearly do not have our best interest at heart, because I know I am only saying out loud what everyone else is thinking. We take turns on a daily basis taking care of each other, helping whoever needs a big hug and pat on the back, and some days giving some people a good talking to about taking responsibility for their lives and the path they have chosen for themselves. We are good together and we do not fight or name call, we are family and we treat each other with respect. Today I am feeling like I am not involved with them as much as I should be. I need to deal with this issue. I will sleep on it for a few nights and I know I will have more clarity on what to do.

I feel like my pain is overwhelming and taking over me. It’s not just a physical pain, it’s a very emotional pain and that for me is the worst part. I can deal with physical stuff pretty good as I watched my husband die from Brain Cancer over a 7 year span and when I feel like I am at my wit’s end with my pain, I think of all that he went through, and very rarely was there ever a complaint. He was truly amazing and to this day remains an inspiration to me to keep going and never give up. “Do not let the pain take hold of you” he would say, “You are stronger than it and it will only take over if you ALLOW it to”.  So on a physical level I can cope pretty well. The hard part for me is the emotional part.

I feel like I am drowning some days, drowning in too much information, drowning in not ENOUGH information and drowning in all the things I have to stay on top off…its a constant daily struggle to be on top of all your various medical appointments for all your various doctors, specialists and surgeons.  Then you have the political aspect of this whole damn mesh, sure I could just lay down and let someone else do it, but that’s not me…I am more determined than ever to see that the powers that  be take responsibility for what has been done to me and my fellow mesh family. Somewhere someone dropped the ball on this and that needs to be brought to the forefront of this fight.

I personally don’t think there will ever be a day when someone steps up to the plate and says, “We messed up and we are sorry for your pain and for what your future holds in terms of future surgeries and ongoing medical issues”. If that day comes, I will probably cry because that would truly show to me that the “industry” does indeed care about me as a person, not a “lot number” for my implanted medical device. There have been so many times during this journey that I think back to the movie, “Erin Brokovich” and how she fought so hard for those families and there was never an apology from the company involved but at the end of the day, the families were monetarily compensated but more importantly, their voices were heard and the companies were “shamed” into admitting they had done these people wrong…to me, that is sweet justice.

The other issue that is weighing heavily on my mind at present is waiting for surygery…I would be a liar if I said I was looking forward to it…I am in one way but there is another part of me that is wondering are we just opening up a whole new can of worms. There are so many differing opinions on whether to have “total” removal or “partial” removal and then there is the issue of who is capable of doing the surgery. So, that is another avenue I am researching daily…I spend hours checking out all the Surgeons and who is capable of what. It is scary, you have to go into this surgery armed with information or pay the price if you don’t. 

As of today, I have been told to pretty much stay immobile to aliviate the pain and pressure of the mesh erosion until surgery which is not going to be for another 1-3 months. Apparently there is a shortage of anesthetics at the Hospital I am going to so that has cut the surgical hours back for my Surgeon. I have been advised to not lift anything heavy, stay off my feet as much as possible and try not sit in an upright position due to the location of mesh erosion. I think its going to be a long few months. When this information was delivered to me, I initially cried and then I felt guilty, something I am working hard to overcome.

I hate the feeling of being dependant on people…for me that is feeling incapable of looking after myself and being a burden to my family and friends. I know it is my mind running away with me because I know with 150%  certainty James is here for me and so are my kids…my family and friends are always here for me as well but I try not to ask because they all work full-time and have their own issues in life. My sisters are busy caring for my Mother and all of her health issues and appointments, I can’t thank them enough for all they do for her and yes, I used to feel guilty about it. In the past few weeks I have been able to get my “guilt” issues under control by coming to realize that I DID NOT ASK FOR ANY OF THIS TO HAPPEN TO ME, however, it DID happen and I have to deal with how it affects every aspect of my life. So I have finally cut myself some slack in the guilt department.

Its been a long day and I have had a lot to think about… tomorrow is a new day and with a new day brings hope, hope for a better day and a step closer to getting my life back in track.

 


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