I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Despite Mesh and Lupus, I will carry on with my head held high….

on December 5, 2012

I’ve been quiet for a few weeks mulling over the new deck of cards I have been dealt and I will say, without a doubt, I have been tested to the brink of my sanity. Through all I have been through in my life I have never felt this close to the brink of just not wanting to play this game anymore. I don’t say that in terms of not wanting to live, I say it in terms of fighting for every single decision I make, every single plan that James and I make in terms of just something as simple as going to a movie. Everything I do now requires a well thought out plan in advance so that I am on my “A” game for the big day, and usually my “A”  game gets squashed and we end up having to go to our backup plan which usually results in just cancelling whatever it was we were supposed to be doing.

When I signed up for bladder surgery, I did NOT sign up for all the wonderful complications that came with it, unbeknownst to me. James and I’s life and the lives of my loved ones have been forever changed and  trying to adjust to this change is pushing me to the edge of my comfort zone, and my comfort zone is “routine” not continual change, which for the people who know me well know that I DONT like change. I’ve been that way my whole life and as much as I have tried to compromise, it pains me to say I still like routine BUT I am open to testing the waters of change. What I didn’t bargain for was the HUGE change that was about to happen when I went into the operating room.

I will say that through the process of my mesh journey, I have met some wonderful people who will forever be very near and dear to my heart. If anything good were to come out of this mess, its my “Mesh” family. I have also encountered some pretty slippery people along the way, when something seems to good to be true, it usually is and that’s a lesson I have had to learn the hard way. I have always just blindly trusted people which has also been a downfall at times. I assume the world is full of good, caring, compassionate people when in actual fact there are probably twice as many people out there that would love nothing more than to see you crumble to the ground and for that reason I have started to re-build my “wall” again. I hate my wall but I have to protect my heart.

Over the course of the last few weeks I have had some major changes in my health status that has required my patience, (patience is NOT my virtue) and as we work through what is happening to my body and what those ramifications will most certainly require me to accept, the madder I get that ANY of this has happened! Some day’s I think I will wake up from this hellish nightmare and my old life will be there for the taking…sadly my nightmare just continues on and on.

About 3 weeks ago I started having extremely bad pains in my temples and then the vision in my right eye went completely black…this kept happening over the course of a couple of days and finally I went to my GP. I think he cringes every time he sees my name on his patient sheet for the day! He always comes in and asks, “So what have you been up to now”…like it’s my fault mesh has robbed me of the life I was quite enjoying thank you very much! We decided that I needed to see an ophthalmologist ASAP to see if this is Lupus related or the drug I am taking for the Lupus. I FINALLY got my emergency apt 2 weeks later, thank goodness they considered this an emergency and only made me wait 2 weeks!!! yes, that is sarcasm! The eye Dr said he is pretty sure it’s not the meds causing it but more than likely the Lupus, not the answer I wanted to hear. I go this Friday to have one more test done and then we will know for sure.

With this new complication thrown into the mix of many others, I have come to feel like I have very little control over my own life anymore. I feel like I am just “existing” in this broken body of mine but I am not living life and enjoying it, I feel robbed of what was going to be a wonderful future. The reality of my future as it stands right now is not looking very rosy. I have come to realize though that if I want my life to be good, then I have to do whatever work I can to make that a reality. The way I do things in life will be different but I am putting myself out there and saying it will be just as good, if not better than what it was.

Along with the changes to my health, I have also had to make decisions I never thought I would have to make and for that my anger is way beyond an anger I have ever felt. My Mother is 82 and she has been quite ill for the last 18+ months which has resulted in numerous hospital stays. With each hospitalization I have had to make the decision as to whether to visit her or not. My Lupus Dr has stressed that Lupus feeds off of stress and I have to be careful of the environment I am in due to the fact my immune system is already so compromised. So I have tried to stay away from places there are too many germs, which ultimately meant seeing my Mom in hospital was out of the question.

I was heart-broken as my Mom had made a plea to the Dr and to my sister that she wanted all her kids with her that particular night as she felt she would not live through the night. I agonized over my decision going back and forth on the fact that if I didn’t see her and something happened, would I be able to live with the decision I had made. I fell into James’ arms and cried like I have never cried before. He just held me and let me sob into his shoulder and said to me that no one can make the decision for me but whatever decision I made, he would stand beside me on it. This man has gone through so much with me over the past 6 years that I sometimes wonder why he has stayed, but I don’t dwell on it anymore because I have come to realize ( with the help of my wonderful daughter who is wise beyond her years and I couldn’t love her anymore than I already do) that if he didn’t want to be in this relationship, he would have walked a long time ago. He talks about our future together every single day and for that I am humbled, he is a very loving, decent, kind-hearted partner, I couldn’t ask for more and hope that I have given to him as much as he has given to me.

I was so very angry in that moment of decision, angry that all of this crap and illness in my life started with one tiny piece of mesh. I wanted to scream at the top of my lungs how unfair all of this was. I should not have had to make a decision like that…the mesh has not only affected me but it has affected how I am to handle many situations I will be placed in. Every waking minute of everyday mesh and Lupus affect my decision-making and I am so damn tired of it all I could just as easily lock the world out and not have to make any decisions, but that is not me, as much as it sounds like a wonderful idea, it is not who I am.

When my husband was diagnosed with Brain Cancer in 1998, I had this love hate relationship with God. I was raised Anglican and lived my life in the belief that you don’t have to go to church to be religious, God will hear your prayers whether it’s in Church or in your home. When my husband died, what little faith I had left quickly went by the wayside, why would a loving God take away my husband and the father of my children? That was an extremely difficult time in my life but I managed to work through it and was starting to slowly let God back into my life, then I was hit with Mesh and all the health issues.

As my Faith was on very shaky ground I figured I would make deals with God, you know the ones where you pronounce that you will be a better person if God listens to your prayers, you will go to Church every Sunday, you will be a kinder more compassionate person and put all your differences aside, everything you do will have more meaning and purpose if God would only listen to you, I am now convinced that is not the way it works.

My girlfriend of 44 years is going through an extremely sad and difficult time right now, her husband is fighting Cancer and has been in ICU for close to 10 days, his battle has been heart wrenching as his life has hung in the balance for many days and my heart breaks for her. I so want to be with her and yet once again, mesh will be the one to dictate whether I can or not.

She called me tonight and she cried and I just listened, what do you say to someone who is at that critical point in any illness that could easily go the path you never want to take. I know EXACTLY where she is at in the grieving process, it is called “Anticipatory Grief”…you are preparing your mind and body for the worse case scenario. I told her to make sure she talks to him even though he has been put into a medically induced coma, hold his hand, tell him you love him, leave no stone unturned, have no regrets. I have walked that path and she walked along side me and when her husband was diagnosed she asked me if I would be there for her and I answered, you will never walk alone, I promise.

My soul has been tested to the core lately and every time I think that nothing else could happen, along comes another crisis. At what point has God not heard my prayers? Should I be going to Church? What is it God wants from me? I am so conflicted and torn and cant seem to make any peace with this. I just want to be a decent person and hold out my hand and let those that want to walk with me  do so and at the same time I want to open my heart to those in need of advice or kind words, I want to help anyone going through the Mesh or Lupus journey as best I can. I have wonderful people in my life and I don’t want to be always taking from them, I want to be giving back the love as well.

If anything were to happen to me tomorrow, I want to know that I was there for my family and friends as much as they have been by my side. I strive every day to make a difference some how and to make sure I tell the people in my life that I love, they are important to me and they make my world a better place to be. At the end of the day, I want to be able to put my head on my pillow and know that I have reached out and done the very best that I can to make someones life a little brighter.

This is the part of my BLOG posts I always look forward to the most, the one that warms my heart and blesses my life every single day, my sweet precious Lily…you are and will always be Nana’s bright shining star and the reason I get out of bed and fight every single day to make my life better so that I can do all the things a Nana should be doing with her grandchild…I love you to the stars, the moon and back again a million times, always and forever my sweet sweet Lily… xoxo

“Live, laugh and love with no regrets”

One response to “Despite Mesh and Lupus, I will carry on with my head held high….

  1. Nonie Wideman says:

    yes Diane, live , laff and love with no regrets….may this motto be contagious !!!


Comments are closed.
%d bloggers like this: