I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

Mesh vs Lupus…which is the lesser of two evils…

This is a really hard BLOG to write tonight. I am already in tears before I barely get started.

I am thrilled to finally to have a diagnosis that is being taken seriously, I’m not out of my mind, I’m not a hypochondriac, I’m not a bad person, I have a real disease…I don’t try to get out of things by making up excuses, I actually wish I could part take more in the care of my mother, be a better Mom to my kids, be a better partner to James and a better Nana to my precious Lily…I WANT so badly to not be sick but I didn’t choose this, it chose me. It’s a bitter-sweet feeling to finally feel validated and justified in knowing I was right and I persevered in the quest to find the answer to my health issues.

As good and bad as that all sounds it hurts me to the core of my being to say it, acknowledge it and figure out how to incorporate it into my life. What do I do with Lupus? How does Lupus fit into MY schedule? How much is it going to affect my life? Will people think differently of me? I want to be treated the same way I always have been, I EXPECT that but sadly today was my first day of realizing I am not that person and Lupus does and will play a huge roll in my life and I also decided I DONT LIKE it!

I realized that some people are already starting to treat me differently…I am more work now because I can’t walk that far and the 20 lbs I’ve put on over the past year due to not being able to keep up my same exercise regime make me very uncomfortable. I don’t like that I am needing to sleep more, especially in the afternoon, this does not sit well with me or other people in my life.

I actually had to take a break writing this…my heart hurts, my soul is shattered and I feel lost. I don’t get lost, I FIX things, I nurture people, I advocate and I educate on the dangers of Mesh, I don’t allow MESH to define me, and yet tonight I can’t slip into any of those roles. I don’t know where I belong tonight, I don’t feel like I belong anywhere…I hate that I can’t dig deep enough to get out of the black hole that is surrounding me. I hate Mesh, I hate everything that comes with it, the sadness, the loneliness, the pain, the loss of everyday living doing simple mundane tasks….funny how I hated those mundane tasks while I was able to do them and now I would give anything to be ABLE to do them, I hate that my body wont allow me to live a “normal” life, and normal comes in many shapes and forms, so I guess the moral of my own story is to find “MY NORMAL.”

I have much learning to do in this Lupus journey…I need to take in all the information I can and adapt it to my life. Like Mesh, Lupus will NOT define me. I need to take back control of my life and put all the mesh particulars into their proper place, on a shelf in a closed cabinet left to the dust bunnies…

I hope that I have the strength to speak my mind about my health to people when they don’t understand why I am to tired to do anything other than lay on the couch…its not because I don’t want to be involved, it’s because my body is simply saying NO, for that particular day…

For tonight, it’s a hot cup of mint tea, my kitties and Christian Grey…can you say “ohh la la” !!!!


It’s not always about the MESH!!!!

I’ve been giddy about writing this blog…The words have been jumping out at me for days now but I just wasnt ready to put the words into text, until today.

Over the course of my life I have encountered life changing events that many will never deal with in their whole life and yet for some reason, God has chosen me to live them, learn from then and share them with the people I love, to help them in their own personal journey’s in their lives.

I don’t pretend to know all or even half of all but what I do know is that from adversity I have emerged from the embers of the fire stronger and wiser and it is from my life’s events I have come to love writing, it frees my soul and soothes my pain, writing is the reason I am still sane after all these years!

I’m not sure if my MESH blog is the right place to post this BLOG but I don’t really think it matters where I post it as long as it is posted…

My life has not by any means been easy…I  had a near death experience at a young age and yet there are days it feels like yesterday and all the fears I had back then I still carry around with me.  I remember very little of the actual illness but I remember everything about the events that took place in the midst of the crisis. I was in a coma and paralyzed from the neck down, my body was slowly shutting down and my parents were told to gather the family. I remember the conversations my Doctors had with my parents over my hospital bed as clearly as if it were yesterday. I wrestled with the pros and cons of living and or dying but what I remember the most is my parents and my 10 yr old brother at that time begging me not to die. I heard them as clearly as I am listening to the TV right now. My girlfriend whom had died 2 months previously told me it was not my time, go back to your family she said…I was torn between the two worlds and yet I knew I had to listen to her…I awoke the next morning to the tears and cheers of my family. That event had mapped out my life. unbeknownst to me…

My father died a few years later and I remember the sun shining brilliantly that early May morning…the birds were circling over their house and it was a glorious morning which I know sounds totally ridiculous but there was such a sad yet wonderful calm that morning. My Dad was a man loved by all, he had the most jovial and infectious laugh that could cheer up anyone, even on their darkest days. He was a man filled with so much love and joy for life despite the death sentence he was given at only 46 and yet he laughed and loved deeply every day of his remaining years, he was a man of true character and I know he would have loved his 9 grandchildren and 1 great-grandchild more than anything in this world. I still to this day, 24 years later, miss my Dad more than I can put into words.

Life was hectic as my husband and I were busy raising a young family and we both worked full-time opposite shifts so our kids would always have their Dad take them to school and me be there to pick them up from school. We saw each other on Thursday evenings and Sundays and as hard as it was, we knew it was best for our family, we believed then as I still do now, you make whatever sacrifices you have to for your kids and their well-being and I do not have one single regret about that time in life.

My husband was diagnosed with Brain Cancer in 1998 at the young age of 47…to say we were shocked would be an understatement…the words were thrown at us in one sentence which ended in his Brain surgeon telling us he would  be lucky to survive the surgery. You can’t get any blunter than that and I knew in that instance I would be not only the bread-winner of the family, I would be the wife, mother, and fulltime caregiver to my husband. It was a role I was thrown into and to this day there are events that happened that still bring me to tears and I don’t honestly know how I got through some of those dark days that spilled over into years…My husband passed away in March 2004 and I honestly did not know how to go on with my life but like with anything else I had been through, you just get up each morning and put one foot in front of the other and trust in yourself that you are able to live the life you have now been given.

In January 2007 my 22-year-old son was diagnosed with a high-grade Melanoma…I got the phone call at work and literally fell into my chair with a cry that came from  the depths of my soul…I never want to go through that experience again. I took a leave from work to help my son and his fiance’ ( whom is my 2 daughter, that is how much I love her and thank God everyday she is apart of our lives) during those first few weeks of surgery and more testing. My son did well but it was hard for me to not be in charge of his care, he was now a young man planning his wedding and living his life the way HE wanted…that was hard for me to swallow but I had to, I know longer was the person to tell him what he MUST do. In May of 2008 he had another surgery for the Melanoma and had to have Lymph nodes removed during that surgery. As a parent, it was the most horrendous feeling in the world not being able to protect your child from the horror of this disease…I remember many days I cursed GOD for allowing this to happen to my son, I yelled and screamed, begged and even bartered that if HE  let my son live I would go to Church every Sunday, I would be a better person…I did all the bargaining I could think of and yet I knew it was not about that at all, it was the hand we were dealt and I needed to accept it and find my spot in life again. I was also going through some very difficult health issues myself but they were secondary to my sons health.

I met james in Feb 2007 and knew on our first date he was going to play a very important role in my life. He talked me through the bad days and held me tight and told me he would always be there for me. That was a hard time for me because I was going through a rough time trying to deal with why the men in my life always left me…I eventually spoke to a counsellor about it and she pointed out a very important fact, they did not LEAVE me, they died, I then needed to put that into prospective and get on with life.

James’ first grandson was born in August of 2007 and we couldn’t have been happier, I do not refer to him as a step grandson because to me he isn’t, he is OUR grandson. It was a very joyous time for us as many events were taking place including the marriage of my son in Nov 2008. It was a wonderful day marred only by his father not being there but my son made sure he was apart of his special day by having a dance with me to my husbands favorite song, “What a Wonderful World”. I cried out of sheer pleasure my son and daughter-in-law made Ron apart of their special day.

My daughter got engaged soon after my sons wedding and in August 2009 she married her long time love, Mike. Her wedding day was just as special and wonderful as her brothers but it was harder in that her Dad would not be there to walk her down the aisle. It was a difficult time filled with just as much laughter as there were tears. My daughter decided she wanted her brother, Michael to walk her down the aisle, and what many people didn’t know was that she had a picture of her and her Dad pinned to her Garter belt…so although he was not there in body, he was in spirit. When I saw my son and daughter come down the aisle arm in arm, I cried…it was simply the most poignant moment of my life…I have never been as proud of my kids as I was on that day.

November 2011 my beautiful granddaughter, Lily Marie was born…I was overcome with a love I have never felt before, my life, despite my many health issues couldn’t have felt any richer than it was. Lily is the reason I get out of bed everyday, she is the reason I fight so hard to get well, she is my shinning light at the end of a very long dark tunnel on my worst days…she is what gets me through those days. I don’t have any great words to describe my love for her only that it is truly indescribable.

James’ daughter was pregnant with her second child, due Sept 17, 2012. We went out for dinner with them on Sat Sept  8th and joked about her going into labour in the restaurant! She had a couple “ouch” moments that we all put down to a spicy pizza, Thai chicken fingers and chocolate cake! Well what we didn’t expect was at 1:30 am we got “the” phone call that she was in labour, 8 days early! We headed to the hospital around 9 AM thinking the baby would be born by noon and everyone would relax and celebrate his birth, didn’t quite happen like that! this little guy had a different plan in mind!

When James and I arrived at the hospital we were  asked if we would like to go into  her room to give her a hug and wish her well. We went in and she was just in the midst of a contraction which was hard to watch but I was hoping I could be apart of this special day. James couldn’t bear to see his daughter in pain so he hung out in the waiting room! I kept going in to see her and see if she needed anything and she asked me to stay…I was over joyed…I took my que from her Mom, (whom I might add is a very dear friend, some find that weird that we would be friends but to us it’s not weird, its wonderful we can be close and laugh and cry about our children and who is up to what) as to how to help her through the contractions. I was in awe of this young woman, she was totally focused during her contractions…I would hold her hand and tell her to find her focus and her Mom rubbed her shoulders and told her to relax and her husband was rubbing her feet and telling her how brave and wonderful she was…many times throughout the day I looked around the room and was so very humbled and grateful I was apart of this very personal intimate event.

As the day was progressing and she was having a difficult time, we encouraged her to do whatever she needed to do to get through the labour, we told her not to try to be a hero by not having an Epidural, if that’s what was going to help her get some rest and be more relaxed and able to do the hard work for the labour, then take the advice of us and the nurses and form her own opinion. Being in the room was so very surreal to me…I felt apart of a very big moment in their lives and the fact she wanted to share that by wanting me to stay in during the delivery, was the ultimate pinnacle for me.

As I started this blog out by stating I have led a full life at just 51, this moment was a moment I never expected to be apart of. I have never witnessed the birth of a child and I can say in all honesty, it is literally one of the most poignant moments in my life. The love in the room those last few hours was so heartwarming and wonderful. Things were happening fast those last couple of hours and the reality of watching the miracle of birth was just starting to hit me…I was giddy with excitement as well as scared to death I would pass out!! We all took our prospective places as the moment drew closer, we were all beyond excitement and were in sheer awe of her strength. The nurses were doing their jobs helping her through the labour part and the Dr then joined the room and was so awesome with her, cheering her on and telling her what a wonderful job she was doing and soon her son would be born. I quickly ran out to James and told him it wouldn’t be much longer now, poor guy had been sitting on his own for nearly 8 hours and he just needed to hear his little girl was doing fine…

It was now time to have a baby!!! Excitement filled the room in the form of tears as we watched this beautiful little baby enter this world with a very healthy cry! To see the joy on her and her husbands faces is a mental image I will never forget. Her Mom was beaming from ear to ear…it was such a magical moment…

I can’t thank her enough for asking me to be there celebrating that most private momemt…For all that I have gone through and all I have yet to encounter, nothing will ever be as special as that moment. Life can be so hard at times but then you witness the most magnificent moment in anyones life, the miracle of birth, and somehow all the crappy moments melt away and you focus on what is truly important in life, family…My life is definitely richer with James’ family being such a big part of my life…

Thank you my sweet “daughter” for sharing the birth of your son with me, you have warmed my heart beyond words and I love you more than you could ever know….

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