I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Never give up or back down from a fight you CAN win for it is in your darkest hours you find the light again…

on February 26, 2013

I’ve been wanting to write this post for over a week now but I have not had the focus required to adequately express what is in my heart and my soul.

My mind has been working overtime with all the thoughts running rampant in my poor brain and yet as I sit here now all ready to write, my mind is drawing a blank! Could only happen to me!! lol

So, where do I begin…Let’s go back a few weeks when I realized the finality of my Lupus diagnosis, I don’t think there is anyone that can prepare you for the ramifications of the disease…I only now know because I live it everyday and I hate it everyday… but like with everything else in my life, I confront it armed with knowledge and the hope that I will always be one step ahead of the disease. I pride myself on my stubbornness, some would say I’m to stubborn but I would disagree, if I hadn’t been this stubborn I am 100% sure I would not have made it through even half of my life events.

I have made a vow to myself that regardless of how shitty I feel, everyday I WILL shower, do my hair and get dressed, I WILL put my makeup on and I WILL make myself eat healthy along with at least one form of exercise. I WILL NOT wallow in self-pity because that is just a useless emotion and Lupus feeds off of stress and emotions.

There are certainly many days I don’t feel like doing anything but pulling the covers back over my head but I deserve a better day than that. I have come to realize that there will be bad days and that’s ok, you just have to ride the wave with them, if my body says sleep, then that’s what I do because the harder I fight the exhaustion, the more harm I do to my body.

Acknowledging my pain and doing what I know needs to be done is really hard for me because I see it as failure and I never want to fail in my life, at anything. I’m still trying to wrap my head around the fact it is NOT failure, it is simply a tired body that needs rest. I have also come to realize that on the days I’ve run out of “spoons” (hope you all remember my post on the Spoon Theory, if not check it out!!) it’s the perfect opportunity to write making it a really wonderful day! There is always a silver lining somewhere and sometimes I forget where to look and get lost in the overwhelming emotions of how my life has changed so drastically.

There have been a number of events that have happened in the last month or so that has really taken a toll on my emotions…I have lost a very valuable relationship with someone and I believe it was all a big misunderstanding that started on FB. This person is no longer in my life and for that I am truly sad but I am not sorry because the words I did say and the gesture I did make was from my heart and if it was taken out of context then I can’t do anything else to right a sad wrong.

What I have learned from this event is that Facebook has the potential to bring out the worst in some people and that on a forum of that magnitude it is essential to remember that even though the words are written on a forum, they are still words and they can still hurt. I believe that it really is so much easier to write the words on FB as opposed to face to face confrontation. On that note my Timeline will now only have positive thoughts and events, any bitching or complaining will be done on the appropriate FB site or page. I  want to send a big shout out to a very wonderful and influential friend because it is with her actions and guidance that I have put this concept into action., no more negative Nellie for me!!!

We have been friends for many many years but like many friendships you lose touch for a while, and yes we did but when we bumped into each other in a grocery store about 5 years ago, we struck up a conversation like we had been in touch everyday! What a wonderful feeling that was! I think we compliment each other perfectly in that we both have our hangups in life and yet she knows when to steer me out of a potential self-pity party  and I am able to see her strengths when she sometimes forgets. I also love the way we watch TV together, that’s a little inside joke. So with that being said, I am so grateful for the relationship we do have.

This is the part of my post I have been dying to get to…the most wonderful thing happened to me last week…I WON my CPP disability battle!!! I nearly fell off the flipping chair when I got the phone call and I can quite honestly say I am still on a high and in disbelief!! It was certainly a very interesting couple of days after that phone call. On one hand I was elated but on the other hand I was sad…I am now disabled in the eyes of the Government and wasn’t that what this whole fight was about, yes it was and still is but when you finally after two years get the answer you so desperately want to hear, it is now a reality, but on the flip side of that, I WON!!!! lol…gosh that feels good to say! I think I could say it everyday for the next year and it would still feel as good as it does now!!

So, with all that under my belt my next task is getting the Mesh out of me! I have searched high and low for a Surgeon in Canada to do ONE operation to get it ALL out of me as opposed to many many surgeries at just snipping away at little pieces. This task is proving to be relentless as most of the Surgeons believe it’s quite alright to take out a bit at a time but I beg to differ.  I am no Surgeon but common sense tells me that the more little pieces you snip away at, the more chance the mesh has of “floating free” within my body and I am absolutely sure that is not going to be a good outcome…it doesnt take a rocket scientist to figure that one out! My heart is telling me that I am going to have to travel abroad for the surgery, at my cost but I want my life back and will do anything to fulfill that dream!

My quest in life has always been to set good examples for my children and to respect the people I love and I think I am doing what I set out to do, make this quest a reality. I want my kids to see a Mom that wont back down when confronted with what may seem an enormous obstacle, in fact it will just tick me off more and the more Im ticked off the madder I get and the more I fight back! It’s a big vicious circle but one I’m willing to go around and round in circles until I am victorious!

There are so many people in my life I want to thank, I know these past few years have been difficult on not only me but also all of you. When you live with a chronic illness you very often have periods of feeling guilty for putting stress on your loved ones, it is not just you it effects, its your family and friends that go through the pain with you. I am so thankful to have the support system I have because there are times when I really do need a kick in the arse! James has a way of doing that without actually saying a word to me! He is my rock and my strength and I am eternally grateful to him for standing beside me through all the crap.

Something else happened this past week that is, I believe, a VICTORY for all of us with Mesh. There was a Mesh trial in New Jersey and after 20+ days of testimony and 8 days of deliberation the jury came back with a guilty verdict against the Manufacturer of this womans mesh implant! I believe there are still negations to be done in terms of compensation but that is all just “white noise” for now, she WON and that is huge for all of us as her case will definitely set a precedence for future lawsuits. I am in litigation and am absolutely thrilled with the outcome as it is validation and justification for the pain and suffering we are all going through.

I’ve said it before and I’ll say it again, I will never back down from fighting for either banning mesh completely or providing a safe alternative to mesh. I have found a new passion in life and I hope it not only benefits me but benefits all the woman who will unfortunately walk the same path we have because they have not been adequately educated in the dangers of mesh.

“often daunted, NEVER defeated”

 

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One response to “Never give up or back down from a fight you CAN win for it is in your darkest hours you find the light again…

  1. Venita says:

    God bless you and your family you are an inspiration to us all and I thank you for being a part of your journey. Unfortunately my battle has ended even before it has begun as I have been informed by the lawyers that I chose that I do not have a case and they will not represent me because even though all my problems stem from the mesh, it is not because the mesh is ‘deemed’ defective. All this after a year of waiting to find out IF my case would be filed…and all this time thinking it already had…UGH. Anyway, God bless each of you and keep fighting!

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