I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

The sum of my fears, my hopes and my dreams….

on October 9, 2013

When I was a young girl I never envisioned my life to be what it is today, and I do not mean that my life is a train wreck…close but not quite.

I think I had a fairly normal childhood and pretty much did what all kids do, challenge our parents authority, had never-ending detentions after school and basically thought I was THE BOSS! Well, I soon learned that I was Not the boss, my Dad made that very clear to me! My Dad and I had a very close relationship, I adored and loved him to pieces, he was my rock, my mentor, the one person who could really make me laugh when I didn’t think I had a giggle in my body! 

When I was 15 I had Toxic Shock Syndrome, I was the first diagnosed case in North America and the Dr’s prepared my family for the worst case scenario. I was in a coma, paralyzed and dying slowly minute by minute. I remember hearing my Dad curse God, “how dare you take my child, I will never walk into the house of the lord if you take her”. He ripped his cross off his neck and flung it across my ICU room. My mother tried to soothe him, she had made her peace with God, “If this is your will then so be it but please love her as we do”.

Two parents on completely different ends of their Faith. After many many weeks and many many months of treatment, I pulled through but I was never the same happy-go-lucky girl I had been. I was guarded and angry. I withdrew into a world of my own, to this day my Mom says my love of life went with that illness. In a way I think she was right and I think God has tested me on so many levels of my Faith throughout my life.

I met my husband at 17 and although he was 10 yrs older than me we married when I was 19. Our first child, Letisha Marie was born when I was 21 and our son Michael was born when I was 23 and life was so very very good. When I was 36 and my husband was 46, he was diagnosed with a Terminal Brain Tumor. To say our world was turned upside would be an understatement. What the hell do you do with that??? We did the best we knew how, we loved each other and made the last 6 years of his life the best we could. Sadly he died at home surrounded by all his loved ones, Ava Maria was playing and we lit 3 Candles to help guide him from this world to the next.

After about 18 months I decided I needed to pick the pieces of me up and get on with life. Ron made me promise him I would not mourn for him the rest of my life. I went on some dates and of course every guy I dated “was the one” I would gush to my co-workers and girlfriends! There were 2 that I honestly did think I could settle down and have a nice life with them, they thought differently and my ego was deflated and I swore off dating for a while.

Going into Jan 2007, just 3 years after my husband passed away my son was (just 22 at the time) diagnosed with a high-grade Melanoma. He had radical surgery and denied any further treatment, thankfully he made it through and we all breathed a sigh of relief only to have a recurrence just 15 months later. He had another radical surgery in which the Lymph nodes were taken as they tested positive for Cancer. He denied treatment again much to my cries as any Mother would do. Thankfully he is now  29 and although we just went through another scare, he is Cancer free…he is under the watchful eye of his oncologist and me! 

In Jan 2007 James and I started dating, he walked into my world which was completely turned upside down with my son’s health and my own health issues I was having and we just went about dating like there were no issues to deal with. He was the best medicine for me and I can never truly thank him for all he has been through with me and yet he has never wavered, he just gets in there and refocuses my world when he knows I am stuck. His one favorite saying is, “It’s nothing till its something”. We live by that now as it is the only way I know how to live. 

Since I have had my Mesh implant and all the complications of it, my Faith has wavered, my love of life has seen many ups and downs, my confidence in the medical profession has completely gone and I know that if I don’t do my own research my Dr’s will not do it for me. I have come to distrust ALL Dr’s and that is my biggest fear of all, what if I distrust them to the extent of something happening to me? If I don’t fight for me, who will? Is it possible I could die from all the complications? My mind races, my heart pounds, my fears takes over many many days and I have to literally talk my way through an anxiety attack. I will NOT ALLOW them to take my dignity, I will FIGHT for that. 

What I have learned is that if I become my own Advocate, learn everything about the illness’ I have, I stand a chance in hell of changing the course of my life. I am in charge of my destiny, it is up to me to make my life worth while. There have been days when I was not sure it was even worth getting out of bed…it was literally just to painful. I know me though and I know that depression can creep in when I least expect it so I have to be very vigilant about keeping on top of my emotions. 

I have immersed my self in helping out on some Mesh sites some of my meshies and I have put together, I have also joined a Lupus support group since my diagnosis in Oct 2012, being as knowledgeable as possible is vital to your well-being and how to live as normal a life as possible with so many autoimmune diseases’. 

I have also started a Website @ http://www.lilystreasurechest.ca and anyone who knows me knows I have a grand-daughter named Lily, she is truly the love of my life and I believe with every fiber of my being she has saved me from hitting rock bottom, again. When I feel the sadness overwhelm me and try to drag me down, I look at my Lily pictures and I can’t help but break out in a huge smile, she is just so damn adorable! 

This past few months have been exceptionally difficult for me, I have come to the realization that in order to take back control of my life, I need to get ALL of the mesh out of me, this involves going to UCLA Hosp in California. I have had to sell my home to pay for my surgery but I honestly don’t think I have a chance in hell at a shot of a better life while I have this toxin still in me. 

I am very angry I have had to take such a drastic step, I have owned a home for 35 years and all of a sudden I am moving into my sister’s basement suite at 52 years old…,never in my wildest dreams did I think this would be the course of my life. I am so very thankful to my sister and husband for taking me in, I can honestly say I am looking forward to spending time with her and knowing I am not alone in my home.

My last ambulance trip to the hospital 2 weeks ago scared the crap out of me and I never want to be in the position again…that was a fear I have not felt for many many years. Despite all my illness’ over the last 3+ years I always felt a small sense of being in control of my life, that particular night I had no sense of control and that scared the shit out of me. To make matters worse, James had just left town and I wanted him here with me.

I must say though, I have the most wonderful neighbors and friends who rallied behind me and not only  looked after me but my kitties.  Molly took a chunk out of my very dear friend Cindy…Molly did not like that there were people here taking her Mom away. My neighbor Carrie gave me rides to the hospital and her husband Claude picked me up a few nights and Cindy and Sara (James’ ex and his daughter) also drove me back and forth and picked me up groceries and made me goodies. My neighbor Twyla texted me to make sure I was ok and our not ok signal was I would bang on my living room wall which is her kitchen wall to let her know if I needed help. I will be so sad the day I move out, Nov 30. I cant imagine not having these wonderful people close by. Be prepared ladies, I WiLL cry for sure!!! 

For now I am living a day at a time, I am done my IV therapy but somehow managed to get the Epstein-Barr Virus and Pernicious Anemia! My Dr has set up appts with new specialists for these ailments and an Endocrinologist for my Thyroid. James will be home from Oct 15-23 and of that week home I have 3 appts!! I am glad he will be with me though, he’s the one person who knows how to make me laugh, even though it hurts like hell to laugh right now thanks to an enlarged Spleen and Liver thanks to Mono! 

So I have faced my fears, I can and I will overcome them, because  for every minute I waste crying over them I am letting the illness’ take over my mind and that will not happen, I am stronger than my fears. 

My hopes and my dreams are what I am working hard on…I have sold my house and now have the money to get my surgery, my dream is finally becoming a reality. When I look to my future I see my dream of James and I living under one roof, loving and having our kids and grand kids close by, our dream of a life together is there for us to grab hold of and run with it and believe me, once I am mesh free we will be holding each other tight…our hopes and dreams will have come true.

Although I may never be Lupus free or free from nerve damage thanks to mesh, I will still embrace life, love life and live it to the fullest I can. I have so much to live for, I am so blessed and even on the days I cry my eyes out, which has been a LOT lately, I always count my blessings first. Crying is just a natural  response to the many different colors of my life right now, I would be very concerned if I didn’t cry! lol

My Mom is still in hospital and she is holding her own, she is a fighter but if it’s her time then I will give her my blessing…Every time she goes in hospital they say its her last, well, they should know who they are dealing with!!! She is like a queen in there ordering everyone around, it’s quite comical and I now know where I get my stubborness…love you Mom…

My life is full, it is blessed and I am thankful that I CAN change the course of my life, there are many many people who are not able to change the course of their life and these are the people I want to reach out to and help when I am able.  

 

“Life is not measured by the number of breaths we take, but the moments that take our breath away”


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