I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

How on earth did MESH become my passion…..

So, after much trepidation and loss of sleep the prior evening over doing the TV interview yesterday, I have learned something new about myself that actually blows me away!
 
I have never liked being in the limelight, I am more of a “behind the scenes” type of person, email or call me and I will move mountains for you, but please don’t ask me to speak in a public forum. So when this opportunity for the interview presented its self, I had a series of mini nervous breakdowns! I was mortified at the thought of putting myself out there publicly, it is one thing to sit here and type out my inner most thoughts and not give it a second thought, but it is quite the opposite to do it for a TV interview! I had a dilemma and was not sure I could go through with it.
 
The defining moment for me was a very plain simple question to myself, “Am I able to live with myself if my voice is not heard to stop the senseless use of mesh and more women are debilitated for life”? the answer was simple, “NO”… I could not quietly sit back and watch anymore as it would forever be a regret that I did not help someone and could have possibly saved them from a life time of hell. That was the moment I told myself, quite sternly might I add, that I HAD to speak up, I have a moral obligation to spread the word.
 
Now, with speaking my mind comes the not so obvious fact that there are things I can and cannot say for legal reasons, so I promised my Lawyer I would not discuss anything legal, give any specific information regarding Dr’s, Specialists, Surgeons or most importantly the Manufacturer of my device. Everything at present is hear say until proven otherwise. However I still have freedom of speech regarding my life pre mesh and post mesh. The floor was mine for the taking and to be very honest, I LOVED that moment of opening my heart to men and women warning them of the dangers of mesh. It was empowering to tell them to do their research and home work prior to any mesh involved surgery. I hope I projected my plea emphatically enough to change some minds.
 
The other thing that came to mind after this interview was the fact that I VERY much enjoyed the whole process! I liked being on camera, I liked projecting my voice to the world, I LOVED putting myself out there in hopes that I can change someones life. Wow, that was the most surprising aspect of this whole mesh mess…I have found a new calling in my life, I will not lay down and be quiet any longer, I will respect my Lawyers wishes so as to protect myself, however no where in our conversation did my Lawyer say I could not speak my heart in a political forum!
 
 Ok, that was my new avenue to bring this to the attention of the governmental bodies involved.
This morning I got up with new resolve and decided it was time to ruffle some Government feathers! I emailed my local MLA, my MP and the PM of Canada. I also emailed the Minister in charge of HRSDC, CPPP disability falls under this umbrella. Its time to make my voice even louder, I am incensed at the way I have been completely disregarded as a human being and a tax paying one to boot. Someone dropped the proverbial shoe on this and I plan to get to the bottom of it.
 
When I retired due to medical reasons, my goal was to write a book regarding my Brain Cancer journey with my husband…never in a million years did I think my life would be so completely and utterly turned upside down by mesh, but from this I have learned that I CAN and WILL stand out publicly and voice my concerns and opinions.  I will not rest until we have stricter laws in place regarding the testing of medical devices and I will not be “assimilated” to the mainstream norm of keeping your mouth shut. I am not that person anymore, I have found a strength within myself I never knew I had, I have found a cause that is so passionate to me it has enveloped my entire world and I am convinced that I can make a differnece…somewhere along this journey I found my self-esteem and self-confidence again and it feels good to know I am back on the right track fighting for all the mesh injustices to be resolved.
 
I have always believed that through adversity comes strength and that you must walk through the eye of the storm to get to the other side…you can not side step the storm because guaranteed it will always come back to bite you in the….well, you know where!
 
So, today marks the start of a new journey for me and I am comfortable in the knowledge that I can do this….
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Living in a “meshie” world has its perks….

Never thought those words would come out of my mouth! Who in their right mind thinks being a “mesh” has perks…well, I am pretty sure all my “meshie” friends! We are this group of people bonded by the very thing that is strangling us, mesh…it is an intricate woven tapestry that has spread amongst us and forged life time bonds, this I am sure of.

No matter how this mesh mess plays out, I know these will be the people I will lean on and cry with, these are the people I will laugh with and vent with, these are the people I will trust with my inner most deepest darkest thoughts, the ones you have in the middle of the night that shake you to your very core,  and these are the people who will always fill my heart with so much  pride and love because they will simply be there, no matter what.  

When my husband was struck down with Brain Cancer, I joined an internet support group with other families who were going through the same pain and even now, 12 years later, we are still bound together from the pain we endured but also from how we have moved forward in our lives, many of us have found love again and life is good..it will never be the same but it is mighty damn good. We understand each others fears of forgetting our past loves and we are there for each other when times get tough.

 There are still days 8 years after my husband passed away that are difficult and sad but I know that at any moment I can reach out to my Brain Tumor friends and I will be instantly surrounded by their love and support.

So, when I think of all the wonderful people in my life that have been there to cheer me on in good times and lend a shoulder in bad times, I cant help but think how very lucky I am to have these people in my life. Yes, they all became wonderful friends through a series of painful events but none the less they are in my life and my life is so much richer for having them alongside me.

At this very moment my heart is beaming as I just had my first SKYPE conversation with one of my “meshies”!!! Oh, it was wonderful to talk to her like we were in the same room…it felt good to say what’s in my heart, no walls, not pretense, we just spoke what is reality in our world as we know it now. Thanks for the wonderful chat “N”…  🙂

Today I am in pain and a smidgen on edge but with good reason, tomorrow I am doing an interview with a CTV NEWS journalist along with some other mesh fellows…its time to get our voices out there and heard, we are not staying silent any longer. I think we all  feel we are one step closer to unravelling this story…it is a good day, I can work through the pain knowing that what we have to say WILL make a difference and our collective stories will help others, and that is why we are willing to put ourselves out there.

“Often daunted, NEVER defeated”

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It’s been a mixed up meshed up couple of weeks….

I have been silent of late, something I am very aware of. I have felt my world slowly spinning out of control and have not known how to stop it. All it takes is for one person to say the wrong thing and all hell breaks loose.

What people don’t stop to think is that I am already punishing myself ENOUGH for not being able to take part in everyday life, I do not NEED nor WANT any further reprimand from them. I am fully and totally aware of the fact that my life is “meshed” up! It doesn’t take a rocket scientist to figure that out. I want to say to these people, “Please don’t rub my face in the obvious fact of me not being apart of your world anymore than what I have already done to myself”, but for sake of an argument and the fact I simply dont have the energy to argue anymore, I just let it go. At what price do I pay for that though, a HUGE emotional one.

Something I have started to do of late is dodge bullets. When I see someone is winding up to a confrontation, I either divert the subject or excuse myself from the conversation and if this means putting the phone down during the conversation, then that is what I have been doing. I do not want to say something I will be sorry about down the road.

There are days that I don’t even have time for myself in terms of showering, eating, cleaning the house, or just chilling as the days are filled with many emails that need returning, Lawyer information to gather up and CPP information to gather up, just to name a few things. I spend HOURS every single day on the computer searching all the various aspects of the MESH and what it has done not just to me personally but all the women who read my blog and contact me. I don’t begrudge one second of my time being spent on researching though, I am very passionate about this cause and I plan to help spread the word GLOBALLY so other women do not have to go through the hell I have been through so far and all the other wonderful “mesh” people I have met. 

My new “mesh” friends are each others  safety lines, we reach out to each other in the dark of night when we cannot sleep, we comfort each other when things are not going well, we cry together and laugh together and share our inner most thoughts, the thoughts you have when you are at the bottom of the pit and wonder if you’re loosing it. I know I can tell anything and they will “get it” because  they have been there…we not only love and comfort each other, we also kick each others ass if we see them sliding and not able to get a handle on life, its then time to kick into high gear and pull them up, dust them off and tell them to get on with life. We don’t do it to hurt each other, we do it because we love each other and we ALL know the depths of despair, it’s just what you do when you see them sliding down the dark hole, you pull them back up with a firm but loving hand.

I am more than humbled though by this experience when I have women write to me and say, “Thank you, your story has stopped me from making a horrendous mistake by having this surgery”. It is a feeling I can not describe, there really are no words, there’s just a feeling of enormous gratitude that I have been given this opportunity to change someones life. If I had to go through what I have gone through to stop someone else from suffering, then it has been worth it a thousand times over.

 I believe that everything in life happens for a reason, I have always felt that but was never really sure what MY purpose in life would be. Yes I married the love of my life at 19, had two beautiful kids, had the dream house and all the frills, life was good and then my husband got sick and died. Ok, that was not part of my plan but it happened and I had to figure out what to do from there.

I always thought my purpose in life was to help my husband die with peace, grace and dignity, and I made it so. I remember thinking after he died that If I never do anything else great in my life again, I will have that.  I made a promise  to him to the day he was diagnosed that I would ALWAYS be by his side and I would surround him with the love of his family and friends and I would be there when he took his final breath, and I was. It all played out like a movie, it was strange and surreal all at the same time.

I was hopelessly lost in my world after his death for about 2 years, I roamed around wondering what the hell I was supposed to do next. Everything seemed to fall into place like a book though, it was strange how things just happened and before I knew it I had met James and knew he would be my partner for life. So when I had this surgery and started with all the complications, I was bewildered, I did not feel in control of my life any longer and I felt a burden. I needed a safe place to vent and I found it in the arms of my wonderful new mesh friends. As much as James and I are like two peas in a pod, there is so much of this nightmare that I can’t fully share with him or anyone because unless you have ever been through it, its something you can’t possibly understand and that doesn’t mean that you don’t care about me it just means its hard for you to fathom the scope or magnitude of this pinnacle event in my life as even I don’t fully understand all its ramifications. It’s literally and truly a day by day experience.

I am truly blessed to have wonderful family and friends who have stood by and supported me throughout all of the many events in my life that have changed and molded me into the person I am today, and believe me there are days I don’t even like myself! I never take for granted the people whom have loved me no matter what.

I do not plan on being silent for long…I jsut needed a couple of weeks to pull myself out of my own pity party and to get back my fighting spirit and I am happy to say I have found it!!

 

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Today, one aspect of my Mesh led to a Defining Moment….

There are 3 rooms in my home that should either be condemned or at the very least banned from me ever entering them again,  they are my master bedroom closet and my two spare room closets. Oh crap, I  might as well own up to the fact it is not only those 3 rooms, it  now involves my main floor hall closet and my exercise room. All the closets, dresser drawers, shelves and even my treadmill are stuffed full of clothes, and if they aren’t in a closet or on a shelf they are over flowing on unused pieces of exercise equipment as they are just collecting dust bunnies anyways so I might as well put the space to use…that’s my story and I’m sticking to it.
 
 It is a never-ending battle of staying on top of my clothing situation. I have given this a lot of though lately as to why I own 160+ jackets; pants and tops ranging in size from 3-13, xs-xl and a few plus size, back in the day. Aside from the obvious, I am a shopaholic when it comes to clothes, and oh I also have a Party Lite addiction but that’s a whole other blog worthy of writing one day, just not today. As far I can rationalize it, my clothing addiction I believe is deeply rooted in my health  for one and my love of clothes, which is the more obvious of the two and to further rationalize it I will attempt to explain myself.
 
I had an interesting conversation with a Meshie friend today and we talked about our “old” selves and how we missed that person. It is true that when something is taken away from you unexpectedly, you become this person you do not recognize and more often than not, you don’t even like. When I first realized I was “sick” after my surgery I realized I had become hardened and cranky, I retreated into this little world of my own because I didn’t understand what was happening to the once vibrant fun-loving Diane and I mourned for “her” to return. I did the obvious and that was to shop. Now initially this was an interesting venture because I could no longer physically go out and shop due to my health issues so I turned to on-line shopping, how cool is this I thought! Well apparently MasterCard and Visa thought it was pretty darn cool as they kept increasing my credit limit! I can honestly say at this point I understand how people become “hoarders.”  It really isn’t that hard in this day and age of technology, you surf eBay, find what you like, use PayPal, press confirm and voila, the product is yours! Wow, this is way to easy!
 
At some point though, you know you are shopping to compensate for what you have lost and for me that was my health, my ability to be and stay independent, my self-worth, my self-esteem and my confidence. Mesh not only robbed me of my physical ability to part-take in daily life but also my emotional ability to be involved in anything with deep meaning. I just decided to shut down one day and that was that. I shopped because it gave me pleasure, plain and simple. It was the one thing I could do without anyone giving me a lecture on having to be more active, more involved and more fun…ok, this could be quite a gross comment to make but here goes…I challenge anyone to live with a piece of jagged mesh poking into their vagina or penis every single minute of every single day and stay active, involved and fun!!!! There, my most inner dark thought is out there…do with it as you see fit…
 
My clothes ranged in size according to my never-ending battle of my weight.  When I was well I was in the size 3 and loving every minute of it, when I got sick and stopped exercising I was in the size 13 and now that I am exercising again, albeit very painfully, I am back down  and in the size 9…my body is a work in progress and the clothes for me are a constant  reminder of where I’ve come from, where I’ve been and now where I’m going. I can’t see parting with them yet…maybe when I am whole again I will be able to part with them because by then they will just be a constant reminder of past painful days, and I’m pretty sure when I’m well, that’s the last thing I want to be thinking about.
 
I was also  thinking about the “old” me last night as I was working on my book and came to the conclusion that I don’t want the *old* me back, not that I wasnt a good *old* me, just that after having gone through this experience, I believe I am a better, more compassionate loving person, how many people get the chance to wipe the slate clean and break out a new “me”.  I do miss the fun-loving *old* me and do hope that part returns once I am well, but I don’t miss the often cynical cranky * old me* as I had become hardened from my husbands Cancer and  my sons Cancer.  That person is gone and I am looking at the world in a completely new way and I like most of what I see and I like some of the changes I have made, so to me this is a new beginning, a new journey in life and a whole new world opening up to me and I am ready for the opportunity to live it and live it well!
 
 
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A Warm meshie day…

Today I am spending the day with my new baby grand daughter…its a snuggle fest day and I cant wait to hold her!!! Her cheeky grin, pudgy cheeks and beautiful blue eyes warm every part of my body and soul and for those few short hours I will have with her, life will feel normal again.

Its all the little things in life that make me feel whole again..you find the joy where you can and then you embrace it…I do not take my family or friends for granted anymore, I have learned that if I build a wall, they will not come but if I let my guard down. they are here…its a very simple concept.

 I have also learned not to be so harsh with those I don’t see because I have learned that this is one of those situations that we are all still trying to figure out…I live it everyday and am just now learning to live with it, but for those that have not walked in my shoes, its not fair of me to presume to know how they feel…They do the best they can with what I have given them and for that I love them dearly.

I have also learned to not take my health for granted anymore…Wish I had figured this out years ago but I’m here now and its never to late…Although I am wracked with pain daily, I can choose the type of day I am going to have…If I fill my body with healthy nutritious food, exercise and meditation, my body will respond to my needs better…I firmly believe that what you put into your body is what you will get back from it…if you fill it with junk, the you will get junk in return…its really a very simple concept we should all live by, so why did it take me so long to figure it out…I hate change, simply put…

So I put this out to you all…I challenge you to embrace the people in your lives, embrace who and where you are today and embrace in the knowledge you do not walk alone…

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For all that I am and all that I do, I do it to stop Mesh from invading your lives….

 

Today I am going to keep it short and to the point from my heart to yours.

 

The past few days have  been a whirlwind of pain but also rebirth for me. The emails and phone calls I received after my post the other day have been amazing and uplifting. I have learned that through my pain I am making a difference and helping others and that was my goal from day one of this blog journey. 


Everyday I get emails from women  telling their painful and very personal mesh stories and it quite literally breaks my heart and I cry almost every day reading their stories but it is through this pain we shall emerge victorious. If I could reach out and hold these women tight and walk alongside them in their journey, I would but that is unrealistic so I reach out to them via my blog telling of my own very personal mesh story and how it has affected me not only physically but emotionally.  


In the short time since I started my blog, a month I think, I have had FOUR women write me to say they have cancelled their bladder surgery….that in itself is overwhelmingly amazing!  It makes me feel for every tear I shed for the women who were not so fortunate there is also a tear of great joy and pride for the women I may have saved from a life of pain and misery.


I do not do this alone, what all of you reading this blog do not know is that behind the scenes there are a team of us working together diligently to end the plight of mesh. We have reached out to each other and formed  a bond that signifies we are bound together by mesh but, we will set each other free by loving and embracing not only our group but all the rest of you who are out there in the world of mesh floundering around in a sea of pain and anger.  We do what we do out of love and respect for all of you who so openly and honestly share your stories.


So today I feel content in the knowledge that we are making a difference albeit one small pebble at a time, which will eventually turn in to one very large boulder that NO on can ignore! We will make more noise than anyone would ever expect us to make…

 

“Often daunted, NEVER defeated”

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One “Meshed up” F*cking life…

Today I write out of sheer pain and frustration…my head and my heart couldn’t possibly hurt anymore than they do this morning.
 
It has been a long painful weekend of truths and unfortunately acknowledgements on my part. What have I learned new about mesh of late, the list is so daunting and overwhelming it is hard to put into context because there is really no end to what it has done to me physically and emotionally. I have learned that mesh has not only infiltrated my body in unmentionable ways, my mind beyond words but also my relationships with my family and friends.  I lay awake all last night after a particularly emotionally wracked day yesterday and the thought came to me that not only does mesh wrap around my insides, it also wraps around MY world and MY relationships.
 
It is so very hard to have any “normal” kind of life when you are not well 90% of the time and on the days you are well, you tend to go gung-ho to make up for all that you havent done and then unfortunately you pay for days on end from that one little spurt of energy. It is hard to keep saying to people, “Sorry but I am just not well today so I will have to take a rain check.” So how many rain checks do you get before people stop asking? That  is what I am so painfully finding out now. The people in my life that I have put my ultimate trust and faith with AND every single ounce of my feelings are slowly pulling away and I don’t blame them, I mean honestly who wants to be around a person who whines about how they feel all the time? I get it, it’s not their life and they are just simply wanting to enjoy life and have fun, not be around a miserable whiner all the time. 
 
What I am angry about is that I did not ASK for this to happen to me! I had a “simple” operation to have a very WELL KNOWN medical issue fixed and I have now been reduced to a life of pain physically and emotionally. This is not what was SUPPOSED to happen. What was supposed to happen was for me to get well and move on with life with this medical issue now *fixed* the world was mine for the taking. Somewhere between the “supposed to’s” and the “Should haves” my world came apart and the “realities” kicked in.  I am now in a place of uncertainty and anger. I am missing out on precious time with my grand-daughter, my kids, my family and my partner, time I will NEVER get back.  
 
I sit here in tears thinking of my world and how it is slowly crumbling around me and I wonder if I will ever have the life I once had? Will my relationships survive my illness, I honestly don’t know at this time. I have nothing left to contribute to them as I am emotionally devoid of all emotions right now. Will I get up tomorrow and feel that renewed sense of “kicking ass”?, that I don’t know either… what I do KNOW is I am tired and I am worn out and for the day I am going to lay on the couch and watch some sad chic flicks to let the pain go. I can cry without having to justify it…
 
Not only has MESH tied up my insides, it has also tied up and is on the verge of wreaking emotional havoc with my life, mesh is literally wrapping itself around my world and pulling me in…I need to confront it and stop it…I am just to sad and hurt today…
 
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