I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

“Phoenix firepants” rises to the challenge again….

I have been avoiding my Blog for quite some time now, there is just so much I have had to deal with and I didn’t want my post to sound like I am not grateful or blessed for all the wonderful things I have in my life.

I decided tonight after much procrastination that I am writing this blog and whatever comes out comes out, to me that means the words are in me and they in turn dictate my feelings and if I am having bad days, oh well, that is the reality of my world sometimes.

I put my home up for sale in early October and within 6 days it was sold! I didn’t even get a for sale sign or a sold sign! I told my agent I felt sort of ripped off…lol  Everything happened so fast that I really didn’t have to many emotions over it for a few weeks, but when the emotions boiled over, I wasn’t as prepared for them as I thought I was. 

This is going back a few years but there was an episode on the TV show “Mad about You” with Helen Hunt…she quits her job and everyone keeps asking her if she is alright, she denies any bad feelings or regrets for quitting. That evening her and her husband go to a movie and part way through the movie she shouts “Oh my God, I quit my job”!!! She keeps saying it over and over and everyone in the theatre tells her to shut up! That was her ‘ah ha” moment.

Last week about 2 days before the move, James and I went to bed and nothing was bothering me, or so I thought. I fell asleep and woke up in the middle of the night, sat straight up in bed and yelled, “I sold my f’ing house, I’m homeless”!!! James flew out of bed thinking someone else was in the bedroom and I was in the corner of the bed in tears! After he calmed me down I asked him if he thought I would carry through with my mission to sell my home and go to UCLA for my surgery, he was very blunt and said, “No, I didn’t think you would actually do it and was shocked when you did but it was the best decision you ever made, no regrets sweetheart, no regrets…our future is so bright we have to wear sunglasses”.

It was a very profound moment for me, it brought out all of the last few years of me not crying to having a damn good cry,  it brought out all of the anger, the pain, the sadness and the sheer disgust and frustration with the Manufacturer’s of my implanted device and their incompetence of not giving me INFORMED CONSENT. My Lawsuit is based on informed consent meaning I was NOT informed. All of those feelings came rushing out in that single “ah ha” moment as I realized I was simply a number to them…device number whatever…they have no regard what so ever for me or my life and that haunts me daily.

So as I tried to deal with all of those emotions, James was very busy with the packing of my home and without him working so hard it would not have got done as organized as it was…he is one of my many many blessings in life. I wasn’t able to help much as I can barely stand most of the time so I was the “supervisor”…well if you know James, you will also know that that does not wash with him!!! lol We had some very tense moments!

There were certain parts of the packing I did not want him doing…I still had a fair amount of memorabilia from Ron and I’s life…I had packed them in containers and put them under my stairs, never to look at them until this move. It was a very emotional time for me as I was going through his personal stuff, his wallet, souvenirs from all his golf tournaments, many many journals I had kept about our 6 year ordeal with his Brain Cancer, family pictures and memento’s for the kids.

 Then I found something that broke my heart…I came across our Camcorder from when we went to The Monterey Peninsula and Pebble Beach…I turned it on and the tape was still in there and all of a sudden my Ron was on the screen and he was talking to me…I literally crumbled into a puddle of tears…I cried for a man who was forced to lose so much of his dignity and pride in a world of Brain Tumors in which the Brain does not let you choose to live a normal life…I cried for my loss, my kids loss and my angel Lily’s loss in never knowing her Poppa…All the years of not dealing with those containers smacked me right in the face when I least expected it. The pain tore through me and I didn’t know how to deal with it all so I just sat and cried inconsolably until there was not one tear left in me.

I felt guilty because I now have such a wonderful man in my life, I love him as much as I loved Ron but it is a very different love as they are complete opposites but there will always be a spot in my heart that is Ron’s.

James went home on the days he knew I was sorting through those containers, he was uncomfortable and so was I. James is one of the most private people I know, he ranks privacy as the highest form of respect a couple can have for each other. I was thankful beyond words that he was letting me have those days of pain and mourning and not asking any questions…he let me be with my emotions knowing that I would figure it all out and get on with things and he was right.

During the packing stages I ended up extremely sick from a Kidney infection and had to be on IV antibiotics at the hospital for 10 days…at one point I honestly thought I was not going to make it. I had Toxic Shock as a young woman and if a UTI or Kidney infection is left to long the infection can actually cause Toxic Shock. I was in and out of the ER for 3 days and on my first actual day home I was sicker than ever with a horrible fever. My daughter in law picked me up from the ER and brought me home, she was worried and asked if was ok and I started to cry, she hugged me and helped me get on the couch to try to get some rest and she left very reluctantly knowing I was not ok.

Thankfully she called her mom who is James’ ex wife and a wonderful and very dear friend to me. She came over and said enough is enough and called an ambulance…you can’t pull the wool over her eyes! So I was carted off again and was in for 2 days and then home. Poor James was out in Regina working and was worried sick, he said it was the worst feeling to get text messages to say I was in the ER and then in the hospital, he came home not long after that episode. What I learned from that whole episode was to quit trying to be such a martyr.

So the packing began again and James is such a meticulous person, he is organized beyond my wildest dreams, I always thought I was so organized, nothing compared to him! As the stress was building in me my Lupus flared so bad I ended up with Mono and Shingles…Lupus feeds off of stress and I had more than enough stress in me for an entire country! lol

My mobility was a huge issue and I was not able to do much in terms of helping James, I felt bad and often told him he has no idea how much I appreciate everything he has done for me and he keeps telling me the same thing, “We are in this together and what hurts you, hurts me, what you can’t do, I CAN do for you” What do you say to that…I cried yet again…I think I could have drowned in my own tears the last 6 weeks.

There were times I felt very humiliated with my body’s lack of energy…this should not be happening to me I would cry, and still do…I feel like I am a burden a lot of the time and I am not saying that looking for sympathy, I say it out of anger to what has been done to me and my loved ones.

During all of the chaos of packing my sister had a heart attack 2 weeks prior to me moving in. I got the phone call late at night and was terrified she would not pull through, I think for the following few days we all just walked around in disbelief. She had 2 stents put in as the main artery to her heart was blocked. She is home now and I honestly have to say I am so glad I am living in her basement suite, we are a comfort to each other. We touch base a few times a day, have tea and chit chat or just watch TV together, this has turned out to be a very good move.

Moving day was difficult for me, I was humiliated at my lack of being able to help but I was also humbled by all the people who helped and the people who love me telling me to just sit and supervise. Its a weird feeling as you are split between to powerful emotions and you can’t just pick one and shove the other aside, they are part and parcel of each other so you have to accept the humility and the humbleness all in one shot.

I never thought being disabled would be so dam hard…there’s not only my feelings to deal with but the feelings of my kids, James, my family and my friends. It’s just as hard on everyone else as it is on me but obviously in a different capacity.

As always, my bright light at the end of a sometimes dark world is my very precious Lily…she can put a smile on my face no matter what…she makes me laugh with her daily antics…Teisha is very good at sending me pics everyday and videos of her learning new things, I wait for my silly lily pics everyday!

So as I sit here in my new place, I am reminded of all the wonderful blessings in my world because it does no good to live in the past, what is done is done, I just have to move forward and set new and different goals.

Now that I have sold I can get all of my paperwork in order for my surgery at UCLA and once they receive everything they will be able to give me a firm date for my surgery. I have been looking forward to this for months and months and now that the time has finally arrived I am scared to death.

This is not an easy operation and may be the first of many but I know without a doubt in my mind that I don’t stand a chance in hell of living a normal life without the surgery. I am trying to stay focused on life now and not get ahead of myself with all the what if moments I have…it will serve no purpose to dwell on the shoulda woulda coulda moments…what’s done is done and now its time to fix it.

What keeps me going is the fact that my story has been told via the TV interviews I have done, my blogs, my support groups I have formed for Mesh and Lupus and for the many many people who surround me in love every single day because they, like I, live with the daily pain…the humility of suddenly being disabled because of a stupid “routine” 45 minute operation but we all share the same humbleness from the many people who have reached out to us and walked alongside us so far on this journey.

I also know that Ron’s love surrounds me daily…he passed away at 11:11 pm and there is rarely a day that goes by that I don’t look at the clock at 11:11 am or pm…I know I draw just as much strength from him in death as I did while he was alive…even in death he continues to guide me and teach me and for that I am comforted.

James is beyond words the most loving caring man I have ever known, he puts my needs first always, he shows me love in ways I did not know…I am the luckiest woman to have found two wonderful men in my life…some people never experience love and I have been blessed twice, how can you not be thankful for this wonderful gift I have received.

I am now focusing on trying to rest my body in anticipation of my surgeries…writing is my outlet so I am really focusing on my book and trying to get caught up with it as I have neglected it for some time now. It feels good to write again, my words free my mind and in return lowers my stress which in turn makes my lupus flares more bearable, it’s a Domino effect, one block falls and they all end up falling.

I am thankful every single day for the love I feel from so many wonderful people…please know that if I don’t say it often or share my love, it is not because I don’t feel it, it just means I have run out of spoons…If you have never read the story called, “The Spoon Theory” I encourage everyone to read it, it is a very powerful and moving story.

I also make European Bracelets that are focused on Mesh and Lupus, my website is: www.lilystreasurechest.ca  I also make bracelets that are not in any way related to mesh or lupus but for the ones related to my two causes I donate 1/3 of the proceeds to The Lupus Canada Foundation and the Mesh ones go to an organization formed strictly for Mesh survivors.

Life is precious, take the time to smell the roses, be sure to say I Love you and live in the moment…

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


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