I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Round one may have gone to Mesh, but all the other rounds are gonna go to ME!!!

It’s been a bit since I have written and so much has happened its time to settle into a blog about Mesh and life.

I had my bladder surgery June 21/12 and am still trying to recover which is proving to be more difficult than I had expected. It literally has knocked me flat on my back which I don’t think I fully understood the recovery process until AFTER the surgery was done! Maybe that’s something I should have looked into a little further so I would have been prepared and I guess what I have learned from this is be educated and prepared for anything that can happen, usually will happen.

Mobility has been a huge issue for me due to pain from the surgery which is already in a “delicate” area and then having 2 bum knees has certainly not helped at all. I have for the most part been house bound which I am not liking at all but I am trying to find my patience which is NOT my virtue. So I am having to dig deep and tap into the patience I know is in me somewhere!

I just went through a really bad bladder infection which landed me in the ER and then 5 days of IV antibiotics as an outpatient. I am very limited to antibiotics because of my “Multiple Drug Allergy” syndrome so when I have antibiotics, they have to be given to me by IV in a “controlled” environment. It was a horrible 5 days as the medication kept building up and building up so each day was worse than the previous. I was having violent headaches, nausea, vomiting, diarrhea, fevers, rashes and complete exhaustion. I finished two days ago and now we are waiting for the test results to hopefully show the infection is gone, if not, its back to the hospital I go.

During all of this I saw a new Dr, a Rheumatologist. She was by far, hands down, the BEST Dr I have ever had the pleasure of meeting! She was very personable, listened to me, read through all the paperwork I gave to her, she was compassionate and kind, she made me feel like a person, not a mesh number assigned to me by who else, the medical profession. She spent 2 hours with me and one full hour was a physical, I have NEVER had a physical like that in  my life to date!

She has confirmed 2 disease’s and has ordered so many blood and X-Rays I swear it will take me a day to do! But, if they are going to point us in the right direction to getting me back on my feet, I am more than happy to be poked and prodded! She has already told me she has no issues with writing whatever letters I require for various “financial” aides that are available to disabled people who she said unfortunately I do fall into that category. I am thrilled she is on board with all of the unresolved issues and hope that the “powers that be” listen to what is true and do the right thing!

I have been filled with anxiety lately which is directly attributed to my health issues…I am trying to find my “zen” through Guided Meditation CD’s which are helping a bit. Finding peace in your life when it is clearly “meshed” up is difficult because it is easy to slip into the “whoa” me category even though you clearly do not want to feel or be like that. It takes a lot of discipline to try to stop it before it happens and even more discipline to get back up when you have slid down the wrong side of the mountain.

I am lucky to have such wonderful people in my life…my kids are hands down the best…I try not to tell them to much as they worry but my daughter has a way of getting it out of me and then she worries herself sick. I would like to give a HUGE shout out to some very special people in my life who over the course of the past week have helped me through my IV treatments by driving me back and forth to the hospital, picking up groceries for me, making me chicken soup, making sure my tomato plants don’t die and listening to me when the fear took over! So a huge THANK YOU to Cindy, Sara and Carrie!!! you guys are awesome and I could never repay you for all that you have done…You guys are awesome and I hope that one day I can do the same!

I am really looking forward to next week, James is heading home and I can’t wait! I really need to be with him right now, he inspires me to keep fighting and to never give up HOPE. He also makes sure I eat properly by way of his funky green and orange protein drinks! Ok, maybe I am not looking forward to that part but it comes from his heart and its his way of making sure we are covering all bases, so as much as I complain about his concoctions, I do drink them…

Despite all the crap in our life with Mesh, we are anxiously awaiting the arrival of 2 new babies to the family!!! We can’t wait for the birth of our second grandson and the birth of my nieces baby boy!

When you are in a world of turmoil you have to step outside of the turmoil and be thankful for all that is in your life, you can’t let the turmoil take over your life. We have many many things to be thankful for and although mesh plays a huge role in my life right now, it is not the only role…its up to me to make sure I am conscious of that on a daily basis.

Life is what you make it and I refuse to make my life about MESH…I write about it, I advocate and educate it but it is not WHO I am. I am a woman very much in love, I am a Mother who would go to the ends of the earth for my kids, I am a Nana and that is the best “hat” I have ever worn, Lily is my reason to fight so hard, she is the brightest light in my life, I am a friend which sometimes not a very good one when I am trying to just get through the pain, I am an Aunt who loves all of her nieces and nephews to death and most importantly of all, I am a FIGHTER and that will never change…

 

 

 

 

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A massage, Lily, and a dam good cry…it’s all good…

Today was a day that started out being very excited about my Massage apt, oh how nice it is to have someone release your muscles from one big ball of pain!

Last week I decided I needed to work on not only the physical but also the emotional and spiritual side of me. I have come to realize that to have harmony you must create harmony within you body. So I  went to a new Massage/Reiki/Spiritual Advisor and she did a treatment on me that released some pent-up anger I have been harbouring. I very much enjoyed it and came home relaxed, rested and rejuvenated to begin my new path in life.

I believe in trying any sort of “treatment” to find a balance in my body that is acceptable. If conventional medicine cannot provide that for me without prescribing narcotics, then I need to look elsewhere, being drugged out of my mind is not an option, for me. Today I continued on my quest for peace within myself.

I woke up this morning feeling quite nauseous and was annoyed because there was no way in hell I was cancelling my 90 minute session! I mashed up some ginger into a paste and downed it with a glass of water and off I went. I have issues of panic attacks in my life which for the most part had gone…recently I started having them again and I couldn’t figure out why and they are really interfering with my daily living. The thing I got from last weeks session was I went 6 days without ONE attack! I was ecstatic! Then this morning I woke up and BOOM, in my face anxiety! WTF is all I could muster, this is not going to stop my treatment. I marched off quite annoyed at the whole world to be honest and very angry that my patience is still being tested.

When I got to my appt I discussed this with my massage therapist and she said she would talk to me throughout the session and teach me some breathing techniques…she also disclosed to me that SHE suffers from panic attacks as well! Are you kidding me! BONUS! She lit SALT rocks and placed them through out the room, the fireplace was aglow, a fountain was softly flowing in the room somewhere, there were candles lit and ocean and whale sounds were being filtered through out the room…It was perfect, a little piece of heaven in Ft. Langley, I felt blessed to have found this place.

She started by asking me to release the “anger”, let it go, you are in a safe place now, no one can hurt you here, breathe through it and let it go…we did deep breathing and I started to relax, just a little…then she said to me, “Diane, think of something or someone who fills that empty spot in your heart that you have kept in you for so long”…and with that, she placed a picture ( I brought one with me) of Lily on the floor so I could see her… I looked into her big beautiful blue eyes with her cheeky grin and instantly the tears welled up and the flood gates opened as I started to cry, a raw cry that came from the pit of my gut, I was heaving with tears and pain and I just let it go…I sobbed and she just let me…it felt like forever but the amazing thing is I did not feel stupid, I trusted her with my fears and I felt “allowed” to just let it be…She did not judge me by my tears, she did not judge me by my pain, she simply let me cry…

I am crying now…the tears are running down my cheeks and the pit of my gut is turning…I have so much pain in me and I didn’t know it was affecting me this much. I am a person that DOES cry, I don’t hold it in but this today was a different “letting” go…It came from anger and betrayal, it came from mourning, not mourning a death but mourning  the loss of my health. I just needed a safe place to do this and it came in the form of a woman who knew what my heart was feeling and how badly it was aching…she tapped into my pain and gave me permission to see, acknowledge it and then let go of it…she said, ” if you let it, it will strangle you, you have the power with in yourself to take back control of your life” and I, in between sobs, agreed it was time.

I am not saying that from this session today I am “healed”….but what I am saying is I have to find a place for my pain and I have to find a way to deal with it. I have to figure out a way to get to “know” my pain and not let it take hold of me…If I can figure that out then I think half the battle will be won. Pain is not going to stop me from living my life and most importantly enjoying my life.

She also told me that I have a very big heart and sometimes I give to much of myself to others and I don’t look after “me”…I told her it felt selfish to do that though…she quickly jumped on that one with, “being selfless is not being selfish, once you figure out the difference between them, you will know the place in your life you need to apply this to”.

I felt a stong connection with this woman today and I know I will continue seeing her and working through my issues…I dont want to feel this mad, angry sad pain anymore. The pain from the mesh and countless surgeries that I have had and for the ones I still need to have is different, it is a physical pain but somehow along this 3 year journey I have let the physical pain transcend into emotional pain, it’s now time to take that back and work with figuring out how to live with the physical pain and how to work with the emotional pain…I will not allow either one of them to take over me again. It’s too easy to slide down the hole you dig for yourself and its twice as hard to climb out of that hole and find peace again. I think this is now my new daily journey, being in tune with my body on such a deep level I can tap into it and instantly figure out which pain is hurting me and stop it in its tracks.

Seeing Lily smiling up at me today just melted my heart, she is exactly what I needed in my life, I couldn’t ask for a better blessing…

May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love.  It is there for each and every one of us.

I leave you with this;

 I choose….. to live by choice, not by chance. To make changes, not excuses. To be motivated, not manipulated. To be useful, not used. To excel, not compete. I choose self-esteem, not-self pity. I choose to listen to my inner voice, not the random opinions of others. I choose to be happy rather than sad. I choose to not have regrets but rather learn from my mistakes. I choose to be a lover not a fighter. I choose to live my life-like there will be no tomorrow.

 

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I am walking through the “mesh” and into the Light….

A couple of days ago I had a very interesting discussion with someone. I promised this person I would not divulge their identity  and I wont but I feel the need to share this most wonderful insight.

I have come to realize that I must re-connect with myself physically, emotionally and spiritually because for quite some time now I have been very unhappy, sad, tired, angry, resentful and living in fear. I fear what tomorrow will bring..more pain, more frustration, more anger…well, if I choose to let it then yes, that is what WILL happen. I have the choice to make all my tomorrows better or I have the choice to live with all my yesterdays being unhappy. It’s in my hands.

I am a person who believes in “principles” and righting every wrong done to me… I must be able to  justify, validate and fix everything at the expense of my own health. . What I don’t take into account a lot of the time is that by working through this tiring process, I am robbing myself of all the joys and blessings in my life. I need to find a balance that allows me to deal with the wrongs of my medical device and the Manufacturer’s blatant disregard for me as a person but also to take all the blessings that are in my life now and put my energy into loving and embracing all that I DO have, not what I DONT have.

I was asked if I feel like I have contributed myself to others in this life and I can honestly say YES, I do believe that I have done some amazing things but I don’t like to celebrate them…I was told to “own them, take pride in them, take pride in you as a person, you are the one blocking yourself from moving forward in a positive way, you have the ability within you to continue to do amazing things with your life, but if you keep living in your past who will never get to live your future”. Wow, I did not see that coming!

I realize that I have a lot of “stuff” to take care of yet,  but while doing that I must also remember to live in the “now”. I will right my wrongs and I will continue to Advocate and Educate on a cause very passionate to me, I will not be silent on that front, I will not “go away”, however having said that I have a future and it is passing me by…My intention on this crusade was never to let it own and define me and in the past few days I feel that is exactly what has happened.

I have learned a lot about myself these past few days and realize that most of what is happening to me is “manageable” as long as I take the fear out of it and move forward in a positive direction. My reasons for staying in the present are right in front of me and sometimes I forget that and get caught up in my pain. Lily is my biggest reason for moving forward, she is a blessing that came into my life and I can’t describe the love I have for my little sweet pea…I have never known this type of love, it is so different from any other kind of love…she is my light at the end of my tunnel and as long as I focus on the end of the tunnel I WILL get there…

My kids are amazing people, they inspire me beyond words, they are both such inspirations to me as I see them take on the world with so much zest for life. I love you guys to the stars, the moon and back again, always and forever…James is a man who came into my life when it was at its worst and yet he makes me laugh so hard sometimes I cant stand! He pushes me to be more and do more, he doesn’t allow me to get stuck in the “mesh world”..he tells me to “fight for justice but in doing that you must remember your other passions in life, do not let the mesh rob you of the people who love you so much, let your guard down and let us help you”. I am doing that now as I walk this new journey…

I have had an amazing life so far, and when I was asked if I truly understand that I didn’t know what to say…I was told that I need to “own it and take responsibility for the amazing things I have  and be proud of how far I have come in the past 8 years and stay on a positive path of not only righting wrongs but loving and embracing life by living in the moment”. That I can and will do…

I do not define myself by how many roadblocks have appeared in my path.

I define myself by the courage I’ve found to forge new roads.

I do not define myself by how many disappointments I’ve faced.

I define myself by the forgiveness and the faith I have found to begin again.

I do not define myself by how long a relationship lasted.

I define myself by how much I have loved, and been willing to love again.

I do not define myself  by how many times I have been knocked down.

I define myself by how many times I have struggled to my feet.

I am not pain

I am not my past

I am that which has emerged from the fire.

 

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I just can’t wrap my head around MESH and yet it has wrapped itself around me…

I’m sitting here after midnight still trying to grasp the last couples days events. It doesn’t seem real or acceptable to me that I should be put in this position but it is what it is, for now.

I have been through a lot of crap in my life and the one pattern I have come to notice is that I have not had control or input on any of the events. I have had to figure out how to deal with everything and still be a wife, mother, bread-winner, sister, aunt and friend, but my biggest role was being a caregiver and nurturer to my husband during his 6 year battle with Brain Cancer.

That was my toughest role because I knew that I would be helping him transition from this life to the next. He was a man who didn’t ask for a lot in life, he was content with his family and playing golf.

When he was diagnosed with Brain Cancer we were told he would not live beyond 2 years, he proved them wrong and lived for 6 years and I believe it was the love of his family and friends but most of all his children who inspired him to defy the odds. Everything possible would be done to make him comfortable and it was always his call if he wanted to stop treatment. I think he endured more than his fair share of treatments just to keep me happy…I never asked him but I have always wondered if that were the case.

The interesting thing about the whole situation was that I felt in control and for some odd reason I felt like this was the hand I was dealt and I just had to figure out how to live it. Amazingly I did and I know without a doubt in my mind that I honored all of his wishes.

So, if you can tell your best friend and soul mate it was ok to leave you and give him your permission…then why the hell is it so damn difficult for me to wrap my head around the whole mesh mess??!! This is not the worse thing that has ever happened to me, I have endured more and come out much stronger and yet I am struggling so much with this mesh. The worst thing was lying in the hospital bed in our home rubbing my husbands forehead and watching his kids hold his hand and tell him how very much they loved him and would miss him and then watch him take his last breath, that was my worst nightmare come true…

I, for the life of me, cant figure out why it is so difficult to have our voices heard, to have the corporate world, the medical profession and the Manufactures of the “devices” implanted, hear our plea, put an end to the un-necessary suffering by any man or women due to mesh implants. Is it me raising my expectations to an unattainable level? I honestly don’t think so, I believe in my heart and soul that if this were to happen to one of the wives or husbands of the professionals I named, you would certainly see heads roll and things change in a huge hurry. So why is it we the suffers cant get the same action?

I have said from the very start of this mesh journey that we are “The Failed Mesh Experiment”…no different than the Thalidomide children of the 1950’s and the Agent Orange victims. There was never any human trial testing on the mesh devices which makes us the test subjects. So I feel that it is my responsibility to Advocate and Educate on the dangers of mesh. Should I be in this position, NO, to me I never had “Informed Consent” with regards to my situation but I want to make damn sure that anyone I know who is contemplating this surgery do their research and do not go blindly into the surgery. You owe it to yourself and your loved ones to be informed and make your decision based on the information you have gathered.

As awful as this sounds and it breaks my heart to say this, having Cancer  (I in no way mean to take anything away from the people who are fighting a Cancer diagnosis at present)  is a walk in the park compared to this. I do not say that lightly either, I say it from experience and lets just leave it at that. With Cancer you have statistics coming out of your ying yang, you have all the “medical professionals” in place, you have counselling at your finger tips, you have family and friends who understand to a certain degree what you’re going through because I would venture to say there are very few people who have not been touched and affected by Cancer at some point in their lives. The sad thing is Cancer is no longer the “C” word, it is just apart of our every day living, it has almost become a “norm” for most families. That cannot be said about mesh and yet there are people who are dying from the Mesh devices implanted in them.

We, the “MESH” people have nothing in place in terms of support groups, counselling or even Doctors and Surgeons who believe in our plight because there is simply not enough evidence to support the fact that mesh CAN and WILL make your daily living a literal living hell. Mesh is not a “visible” illness so its easy for people to not take you seriously when you give them a list of your symptoms, instead you are looked upon as being mentally unstable.

Trying to find the “professionals” who will support you and actually help you in your quest for total removal of your mesh device is next to impossible. There are very few skilled Surgeons, especially in Canada who will take on the dangers of removing the mesh. Is it not ironic that they have no problem putting in a mesh device but when you want it out due to the fact it has eroded your vaginal wall or you have 15 or 20 other complications from the mesh,  there are very few Surgeons who will step up to the plate and actually work with you to do their utmost best to get you the help you need whether it be surgery, pain management or physio, and yes believe it or not there are actually qualified physiotherapists who work with you to strengthen your pelvic floor muscles….that just sounds so wrong to me as I can’t fathom going to a physiotherapist to be trained on how to strengthen my vaginal muscles…as if I havent had enough dignity and pride stripped away already now you want me to go to a complete stranger to discuss my privates??? WTF is up with that? That’s another issue I can’t quite wrap my head around.

My life has been completely turned upside down since my bladder surgery in Dec 2009 and I feel violated and alone because I cannot openly discuss in any public forum or even on my BLOG what the mesh has done to me. I have to be careful I don’t name “Manufacturers” because it can be taken as “slander” which would jeopardize my lawsuit. So now not only have I lost my dignity and my pride, I have lost the right to freedom of speech.

Will I ever step back and out of the public eye of “The Mesh” war, NO, I have found a cause that I am so passionate about that I will make it my life’s mission to spread the word about the dangers of “polypropylene” mesh.

For now I need to sleep, I feel like I have gotten a lot of the demons out of my head but I also know that with every new day comes a new fear of the gravity of what the mesh is doing to my life, physically and emotionally. I just need to learn how to live in this moment and enjoy the blessings I have and not what I am missing or may ever have.

My BLOG is my sanity at present, it is a place I can openly ( to a certain degree) share my fears with anyone else travelling this road and we can laugh and cry together and hold each others hand on the days you struggle to keep it all together.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength”

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