I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

“Im all meshed up” BLOG Revival

I am embarrassed to see how long I’ve neglected my Blog!!!
I am going to be writing on all my BLOGS as I am trying to get my BOOK finished!

 

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I’m not whining! It’s called “entitlement” to be whiny….

I wrote the attached BLOG two years ago. I cant believe I haven’t written for that long, so I am going to leave this post with you to read and digest.  I am working on a new post and will definitely post once I finish it! There is much to be said, good, bad, happy and sad, my life “post” mesh…

FEBRUARY 2014:

Ok…so I’ve neglected my blog lately mostly because I know there will be tears shed while writing this…it’s inevitable but I am not saying they will be bad tears…there are a lot of good tears…

Since my last post I have sold my home and moved into my sisters basement suite they have just built, well it is still in process so I am living out of 2 bedrooms and a bathroom…lol… I am not in any way complaining though because her and her husband took me in so that I can finally get my surgery at UCLA for a TOTAL mesh removal. I am paying for the surgeries so need every penny I can get.

Leaving my Townhouse was and still is very sad to me, it represented my independence after my husband passed away…I have not lived on my own…ever! I married my husband when I was 19 and went from my Dad’s house to his house. So when he passed away I stayed in “our” home for 23 months and then decided it was time to spread my wings and get out into this big world I had never really ventured out into.

It was so hard to sell and say goodbye to “our” home and many wonderful memories but also some very sad and horrible memories…when I think of that house I remember more sadness than I do anything else. I knew I had to move on, Ron would have wanted me to, so I did.

I moved into my townhouse in Feb 2006 and from day 1 I LOVED it!  I remember telling my friends and family that I was scared to death to live on my own and that it would be so sad and I would  just hate it, well, that never happened! I loved being on my own from Day 1…I missed my kids dearly but I loved my freedom as well! I moved into a fixer upper but put my own stamp on it and I was ok with that because I left for England and Italy half way through the Reno’s! I was seeing someone at the time and he took over dealing with all the Reno nightmare’s while I was drinking my way through England and Italy!

I met James in Feb 2007 and he joined me on a very difficult journey dealing my son’s cancer diagnosis and my cancer diagnosis, both within a few months of each other. It was such a painful time in my life as I had just gone through 18 months of loosing a lot of weight, feeling better than I had in 15+ years, dating and vacationing and just having the time of my life! The diagnosis’ knocked me off my feet and thank goodness James was there to pick me up and keep me going.

Since 2007 we have gone through more chaos than most people go through in a whole life time! The biggest and hardest has by far been my Mesh surgery in Dec 2009…if I could take back that 45 minutes in my life I would in a heartbeat…instead I have had to face my demons head on, I am in the fight of my life and am damn determined I WILL win this fight.

I had a near death experience when I was in my teens and I believe that event set the stage for how my life would play out. I didn’t like it at that time because I was young and I didn’t understand why or how God could put this on my shoulders and figure out how to make a life out of what was left of me.  There was a reason why it happened and I now know and understand that reason and I wouldn’t have changed a thing.

I learned from my experience that I would play the vital role of helping my husband die with peace, grace and dignity as he faced his terminal cancer diagnosis, malignant Brain Cancer. We went through 6 years of a lot of hell…there were good times but in my mind still to this day almost 10 years later I just remember pain.

His diagnosis was the ultimate insult that God could have ever dumped on my doorstep! I was angry, hurt beyond words knowing I would have to say goodbye to my husband, in absolute despair for my kids, no kids should have to go through what they went through in those 6 years and not be scarred for life. I am so proud of them, they are my absolute hero’s, they have strength and understanding beyond their years, what they have taken from their Dad’s death is “To live in the moment, life is short and there by the grace of God go I”…remarkable is all I can say.

The tears have started…I am so proud of them and who they have become and I love them more than there are words…they have rationalized Ron’s death…they saw how much he suffered the last 3 years and realized that he is in a much better place, free from pain. How do you do that at such tender ages they were at 19 and 21? They have shown me strength beyond their years…

My head has been swirling with ups and downs the last few months and I am almost embarrassed to say I feel like I have whined too much and need to pull up my big girl panties and get on with life.  So I posted something on my Face Book page a few days ago that I don’t want any negativity in my life…only positive…A few people have said to me that they saw a “whiny” post recently and called me on my negativity post. Ok in all honestly and fairness to me, I didn’t say I wouldn’t ever have “bad” days…I stated I didn’t want negativity…in my mind there is a HUGE difference! We ALL have bad days, I wouldn’t be human if I didn’t and I am ENTITLED to them as is everyone else!  I just have to be very careful that I don’t let my bad day turn to something bigger…depression.  

I have dealt with depression and I know how to respond to it when I feel it enveloping my world…I fight back, I get mad, I yell and scream, I have been known to break a dish or two on really bad days…lol…I don’t LET it take over my world because it is very difficult to climb out of the big hole you dig for yourself when depression hits. I can’t let it pull me down…I have too many things going on this year and need to be on guard at all costs.

Some of my whiny posts are about Lily…I miss her so much and I am not the Nana I want to be to her…that causes a lot of tears but I have finally come to understand that I WILL be that Nana one day and that day will come soon. Yes I cry but no I don’t let it take over me anymore.

So, I have come to the realization that my life is what I make it to be…I hold the keys to unlocking the doors that challenge me and I also know how to put those challenges into perspective. I am finally learning that I DO control my life, yes Mesh and Lupus have taken away so much of the “Diane” I used to be but I have also realized that I can be a “better” Diane and who could say no to that!

I have dedicated a lot of time to writing my book lately which is painful and heartwarming all at the same time…It is something I need to do and I am enjoying it as it is giving me strength and understanding of the years that were so difficult. I am also starting to get little “flash backs” of some of the funny things that happened during those years, it has taken me almost 10 years to remember Ron pre Cancer…I was always scared I would never remember our life together, all 26 years but lately I have caught myself laughing out loud at something funny that happened all those years ago.

I have a few other projects on the go and I am getting to tap in to my creative side once again…I thought I had lost it but nope, it was just misplaced for a bit! It’s amazing how much your world can open up when you allow yourself to dream again…I know mine has and I don’t want to ever lose sight of my dreams again.

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

“We cant be stopped, if we’ll only just begin”

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

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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The Upside of Mesh and Lupus

That is a sentence I never thought I would write! It’s beyond me how there can be any upside to either one but there is.

My Mesh journey began in Dec 2009 when I had a ‘routine’ procedure done, I say routine because it is literally a 45 minute procedure done under general anaesthesia. I went home the same night and the rest was supposed to be history…hmmmm that is not quite what happened! Never in a million years did I think my life would be forever changed.

Since that surgery I have had 3 more surgeries to try to remove the “device” and am nowhere near having it all removed. I think I would say it is a work in progress in which I am the guinea pig. I went from being a vibrant, fun-loving outgoing 48-year-old whose life was exciting and adventurous and I lived it and loved it to being a sad and angry woman.

Everything started to unravel in 2010 when I was noticing all these different but vague health issues, I wasnt really really sick but sick enough to know something was wrong. I went to my Dr complaining of all these new symptoms and I was pretty much labelled as a “hypochondriac” and sadly I felt like one. How do you explain to your partner, your friends and your family that you feel like crap all the time without them looking at you like your crazy. My spunk and zest for life was gone and my social circle was slowly narrowing to very few friends.

People would tell me I hadn’t grieved for my husband properly, I didn’t fit “their” criteria for grieving, well excuse me, I had SIX long Brain cancer years with him and I went through what is called “anticipatory grief”. My body and my mind had already started the grieving process long before he passed away…I grieved every single day of those 6 years, I had grieved enough and when he passed away I locked myself in my games from for 6 months, now if that’s not grieving I don’t know what it.

So how did I get someone, anyone to listen to me, I researched my symptoms until I knew everything there was to know about Polypropylene Mesh and its side effects. I then saw the American TV ad about TransVaginal Mesh and contacting a Lawyer if you had the surgery within 5 years. I phoned the Law office and they gave me the name of a Lawyer here in Canada who was taking on new clients…I beleive I was his 11th client for mesh litigation. Little did I know then I had opened a Pandora’s Box that will never close again!

Then I started back with my Dr and trying to get him on board, that was and still is hard, the medical profession only works with black and white, there is no grey…it either is or isnt…I was frustrated beyond words, I wanted to scream at him and everyone else within earshot! He could see I was going down hill fast but I will give him credit for hooking me up with the one Dr who diagnosed Lupus and many other autoimmune diseases I have. I am forever grateful to her.

Fast forward to today and life is crazy as I am now retired thanks to my medical issues and I spend a lot of days on my couch feeling like I was just sucker punched in the gut. Everyday I am very conscious of my health and all the ramifications that come with it and I would be a liar if I said I was used to it because I’m NOT! I struggle everyday but I also am very mindful that I find the joy in everyday, even the crappiest shittiest days there has to be joy in there somewhere.

The last week or so I am starting to come to terms with my life, I am learning the art of acceptance and how to put all the issues in my life in their rightful place. I am not allowing my health to run my life, that statement doesn’t mean that I like what has happened to me but I am also not wallowing in the self-pity I once was.

I have been blessed with many wonderful friends who have reached out to me, there was a time when I would just lock myself in the house because it was my “safe” place. In my house I didn’t have to explain to anyone why I didn’t feel up to doing things. I didn’t like it but it was the easiest way to deal with my health issues. I was starting to become a hermit and I was not liking that.

Then I came across “The Spoon Theory” which was written by a woman who has Lupus and it is all about how to live with a chronic illness by using the spoon theory analogy. Basically she wrote about how spoons explain your day-to-day activities in that say you start out the day with say 20 spoons, you need to be able to get through your day with at least one spoon left, very rarely does that happen because even the smallest things we do as Lupus patients is routine to most people. I know that even taking a shower, blow-drying my hair, putting on my make-up and getting dressed can use up an easy 6 spoons and that’s just the start of my day. So essentially its all about prioritizing your activities for the day.

I took “The Spoon Theory” and decided to order “a” spoon  ( I got 100 spoons and that’s how it all started!!) and wear it around my neck so that on the days I was wearing my spoon necklace no one needs to ask me how my day is, the spoon says it all. Then I decided to take it one step further and I offered free spoons to my Mesh and Lupus friends, that was awesome because a few of the women gave them out to support group or  events they were involved in. I can’t tell you the feeling I had sending the spoons out and hearing back from my ladies on how it went, this has made a huge impact on my emotional well-being, I was bringing a small amount of joy to people who were so thankful of my gesture and that honestly warms my heart and soul, it has been amazing to be able to do this and I have ordered my second set of  spoons.

I then decided to take things another step further and have started making Bracelets for Lupus and Mesh awareness and with them both having purple as their color it has made it very easy for me. I said to a girlfriend of mine last night that I have found my passions in life, writing my autobiography,  my blogs and now making bracelets! I am also branching out and making bracelets for any cause be it breast cancer, lung cancer or cancer in general, people with Fibromyalgia or Osteo or Rheumatoid Athritis…I have turned my pain and my self-pity into something very positive and I hope to be able to bring joy to so many women who really need to feel validated about their illness, these bracelets are a statement piece, the acknowledge the illness and are bringing awareness to such important causes.

My life feels full filled, I am not the oh so down on my luck whiny person I was just a month ago, I have these medical conditions and although they don’t define me, they do play a role in my life on how to carry on and spread the word be it through my spoons or my bracelets. I feel like I have come full circle in the last few weeks, I have turned a corner and am now seeing my world in a very different light.

I feel like this is the first time in the past 4 years that I can see a light at the end of the tunnel in terms of accepting the role of Mesh and Lupus in my life and from where I’m sitting right now, its know where near the crash course it was just one short month ago.

I have met such wonderful people along this journey and I will be forever grateful for them because we walk this journey together. Never did I think there would be any good that would come from Mesh and Lupus but I have been nicely surprised! Life is what you make it, you can stay stuck in your life in the moment of “oh why me” or you can step outside of that and say, “ok, what do I need to do to make my life better”

I am sure glad I stepped out of the mind-set of “why me” and stepped into the mindset of “why not me and what can I do to help others”.  One single gesture can bring you a lifetime of happiness and I am good with that!

 “Hey Lupus, you picked the wrong Diva to mess with”

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The Value of of my Life….

I was recently asked by a very good intuitive friend of mine to answer two simple questions. Lets just say they were not simple and have haunted me for the last 5 days! Certainly gave me food for thought…my brain is on high alert as it is, now this new question just added more fuel to the fire.

So, the questions are, “What is the value of a life, ANY  life” and “What is the value of YOUR life”…WOW! Two huge questions to ponder. I’ve thought about it a lot these last few days because I am trying to find the “old” Diane, she went missing sometime last year and I want her back…as hard as it was sometimes I used to have a sense of humor…Its not there as much anymore…I am becoming cynical and negative and I don’t like who I am anymore.

So, the value of any life? First off I am the consummate believer. I believe that ALL people are good and that yes, sometimes people get “lost” like I have but overall the world is full of caring and compassionate people. The Value of ANY life to me means that all people want to have a good life, they believe in honesty, compassion and caring, they believe in having good morals and values, they help others and nurture the elderly and the sick.  I believe we all want world peace and all that mush stuff…I can’t imagine any one person starting out bad, I believe it is their family upbringing, their parents guiding them on the right path in life…or the lack there of, people can’t possibly start out bad, or can they?

James says I wear my heart on my sleeve and trust to easily, that used to really bother me but I do think he is right. Just because I think that’s how people should be does not mean they are. Do I live in a fairy tale world? Sometimes I think yes, I need to take my blinders off and take a good hard look at the world and figure out where I fit in.

If I were to answer this question (about the value of life) in all honesty I would say that pre-mesh and pre-Lupus I loved my life,  loved my freedom to be able to pick up and do whatever I wanted to. The value of my life at that time was to just enjoy my life. I had just gone through 6 years of Brain Cancer hell with my husband and his subsequent death. I didn’t want to think anymore, I just wanted to have a carefree life, no ties, no illness, no worries, I wanted my life to just be whatever I chose it to be on any  particular day.

After my husband’s death I lost a lot of weight, I was running three times a week, working out just about everyday. I was dating again which is a whole other Blog!!! Life was good, I spent a year and a half doing whatever the hell I wanted to do! I knew how to party and be flirtatious, I enjoyed the male attention I was getting, I am not embarrassed to admit that, life was grand and I was having the time of my life.

I met James in 2007 and I was content to be in a stable relationship but don’t get me wrong, it was also very difficult because in MY life, the men I loved either died or left me. My guard was up with James, I couldn’t believe he would hang in there through my health crisis’ which were completely separate from what I have now but none the less very significant. I was also dealing with my son just having been diagnosed with Cancer, life was all of a sudden very complicated and heart wrenching. James never wavered, he stood by me and helped me through the really rough times.

The value of my life at that particular time was to try to believe in the good of life but I couldn’t…How could I believe in the good when my 22-year-old son was struck down with Cancer? Wasn’t my husband dying from Cancer enough for one person? Why would God let this happen to my child, I couldn’t fathom for the life of me WHY…I prayed everyday for my son, for me being able to keep it together for him, to not let him see me sob my heart out at the thought of ANYTHING happening to him! I wore a painted on mask for my family and friends to see, I did not want them seeing the possibility of resignation in my heart. I believed it was extremely important to NOT let my kids see me cry, no matter how hard it was, I could not show them a weak Mom, they needed a strong mom who would guide our family through hell once again. My “value” at that time was very simple, it was to get my kids through this crisis unscathed.

I thank God everyday my son is now a healthy and happy man who has been declared Cancer free and my heart couldn’t be happier! He is pursuing his goals in life and achieving many of them! He is an inspiration to me on many days I am down, I look to what he has endured and that’s when I know I need to step it down  a notch in the “oh woos” me department.

So after we got through that crisis my kids both got married and life was really really good, I was finding my Value again and a lot of it was that I was so very proud of who these two wonderful kids, my husband and I raised, had become. We had done well and all though my husband is no longer here, I believe in the deepest part of my heart is ALWAYS with us at any given point in our lives.

Over the years my health declined significantly, and although I can’t go into a lot of detail on this subject, lets just say that I no longer believed in the good of all. I have been tested to my very being over the last 2 years and I know without a doubt in my mind I have become hardened and cynical and I DO NOT like this Diane. Once again James has stood by me and tried to guide me…there have been many an occasion I have built my wall again and tried to push the ones I love and who love me in return out of my life. That is how I deal with things when I am overwhelmed to the point of exhaustion, I shut down emotionally. This did not sit well with James and family and they will not allow me to push them away. I am now at a point of no return with my health, its do or die, time get sh*t or get off the pot.

My intent now is to find a surgeon who will get rid of ALL the mesh in me and get me back on the road to good health. This may involve leaving Canada to have the Surgery and it may involve me selling my home and downsizing in order to get the money I need to pay for the surgery, but if that’s what I need to do, then so be it. I can’t continue to live with the knowledge of what mesh is doing to my body. I need to take a stance and follow it through.

I have battled CPP for 26 months and won the fight many said I wouldn’t! I am immensely proud of myself for pursuing this even though it was sucking the life out of me everyday but I refused to give up on something I knew in my heart to be wrong…They, CPP, made it sound like I wanted a free ride in life, they did not look at the facts but every time they said NO, I pushed harder and fought harder, I don’t like defeat when I KNOW I am right!

Does it bother me that I feel like my life has been reduced to what it is right now, hell YES! I am fighting back though and willing to try anything to get back on my feet. I know I will have Lupus and a host of other Auto-immune diseases for life but that does not mean they will define me, they wont because I will never allow that to happen…I will find a way to live my life with purpose and conviction, I will educate and advocate the dangers of mesh but I will also reap the rewards of my hard labour because for every ONE women who cancels their mesh survey because of my story, I am humbled and immensely overwhelmed with joy.

I had an interesting scenario happen the other day and after it bothering me for a bit I decided to take it up with James to see if it was just my imagination or did it actually happen. When James and I first met he used to be jealous about another man looking at me…he didnt like it but I said to him, “Women look at you and it doesn’t bother me at all because I know you are mine”. So, I have noticed over the last few months things have changed, the women still look at James but now the people who do look at me do so with pain in their eyes as they see me with my cane in obvious pain and much to young to look like an old lady. Was I imagining this? I thought maybe but when I posed this question to James, he said No, he had also noticed people looking at me and feeling sorry for me. I don’t want pity, I want understanding because I am still Diane and I still have the same morals and values, probably more so now because of what I’ve been through.

Sometimes I feel completely invisible in my world trying to live with Mesh and Lupus…it gets very lonely some days so I have to figure out a way to deal with my emotions on those days.  It is only as lonely as I let it be when I have my guard up so as not to get hurt emotionally.

I am trying to embrace this new life and all the knowledge I have gained from it. I have decided to steer away from conventional medicine a bit and am becoming more inclined to go the “holistic” route. Obviously conventional medicine is not the be all end all because if it were I wouldn’t be in this mess, period!

So as I have tried to go through my life and its never-ending changing pace, the value of my life right now is my family, my Mom and my sisters,  James and my kids, and of course Lily, the reason for getting out of bed each day knowing that my daughter will send me a picture or a video of her on my iphone…those are the great days, her little face smiling at me and her kissing her phone as if she’s kissing Nana…it doesnt get much better than that. I love my little silly Lily more than I can say, she is cheeky and funny, how can you not love her to death!

So, as my life changes so do my values and that’s a good thing because it means I am finally becoming open to change. I have learned to let go of the little things and only fight what I know to be true in my heart. I can do this and I will do this, there may be bumps and curves along the way but I will enjoy the journey I am on because at the end of the day I have the love of my family and I couldn’t ask for much more than that other than the love of my grand-daughter, my Miss Silly Lily bum bum!!!!

 

“Often daunted, NEVER defeated”

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

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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Mesh is my pain, but courage is my freedom….

I wasnt going to BLOG so soon in the New Year mainly because I didn’t want it to sound like I was whining, yet again. However after todays events I need to get this out of my head.

Christmas was as expected hectic, tiring, anxiety ridden but wonderful. My eyes were opened to the reality of how Mesh and Lupus have affected my life but which I have always thought I had under control, but that little fact was quickly shot out the window. I found that James and I were having to choose what events we could attend and what we couldn’t. If we committed ourselves to a function, it required a minimum of 2-3 days rest on the couch for that one event and invariably after the event I was back on the couch for a couple of days. There were some events I couldn’t even attend leaving James to go by himself and give my best to everyone.

Christmas was also different this year as  I couldn’t get out to shop so I had to do online shopping, it was fun initially and then it was sad and I cried a lot as the presents showed up at my door. James and I used to love going Christmas shopping together and the old Costco run was even enjoyable, go figure huh…I know that sounds weird but when you can’t do something you’ve done before, you realize that whatever it was you couldn’t do, was actually very enjoyable, we just never realized it at the time.

I don’t think there was one day in Dec that I didn’t cry because I was so overwhelmed with the anticipation of the big day and the reality of my current situation. I was excited to see the young ones awaiting the arrival of Santa and Lily even sat on the “big guys” knee and had a smile on her face!!! Lily doesn’t care who holds her, she just loves to interact with people and its wonderful. I had moments of feeling guilty I couldn’t do more or help more with all the work that is involved in hosting Christmas dinner, my sisters prepared a fantastic meal for 22 people. I wanted to help but I couldn’t, Lupus had kicked into high gear and I was on the couch. I thanked them both for all their hard work and apologized for my inability to help. My one sister held me and said not to apologize for something that was out of my control. We both shed a tear and held each other tight.

My kids have always spoil me at Christmas but this year it was different, they still spoiled me but the thought that went into the gifts they bought made me realize my kids had become adults and felt and understood my pain. My daughter bought me a journal, not a normal one either, it is a journal about trials and tribulations of life. The Journal is called “It’s gonna be ok…a journal to reassure myself when I’m overwhelmed by the creeping sense of impending disaster and the all-encompassing fears both specified and vague that colonize my mind, my body, and soul, all of which, from the completely far-fetched to the sometimes probable, do me no good to contemplate and in fact make me miserable, and even though optimism may be unself-aware and ill-paced, I know I’ll be happier as a blind fool than as a clairvoyant apocalyptic”. Each day has a Quote to motivate you to see and think outside the box that you have built around you, it is a challenge to me for sure because when you are fighting so many battles, it is so easy to get lost in the battles and not find the joy in life, and there truly is much joy in my life. My son bought me a lovely lavender neck wrap, it’s so plush and smells wonderful and each time I use it I will think of my son with love. I can’t even name all the gifts they spoiled me so much!

Our Christmas gift from Lily was the best, my daughter had an ornament for each of us made and, one was for Nana and one was for Grampa, and engraved with “Love Lily”. We put them on the tree and I shed a little tear because this beautiful little peanut brings me so much joy, even when I am not with her and I get a text message with a picture of her, my heart swells with love. She is the best part of my daily living, the innocence of a child truly does make the heart better.

Everything the kids bought was with my health in mind and that alone made way for another round of tears. I can’t believe how much thought went into each gift, I was and still am humbled beyond words. There is no price tag you can put on love, it comes from the heart and there was much love sent my way.

As hard as Christmas was, I enjoyed it thoroughly but to be quite honest I was also relieved when the season came to a close. By New Years Eve I could barely get off the couch and was quite content to stay home with James and just relax with a good movie. We enjoyed the quiet of the day, lazing around in our jammies doing absolutely nothing….ahhhhh…perfect as far as  I was concerned.

With New Years comes the task of making that New Years Resolution, I swore I wasnt going to make one but as previously blogged about being thankful everyday for one thing that happened that day to warm your heart, I started my “I am grateful for” beautiful glass blown vase.  Each day I will find the good in the day and write it on a piece of paper and put it in the jar and then on  Jan 1, 2014 I will take a piece of paper out of the jar and read about that day. I am very excited about this project because I feel myself slipping into to many dark days and am worried that I am not finding the joy in everyday.

So, New Years is here and what can go wrong, its only 2 days into the New Year?! Well, to answer that question may involve some curse words and definite ranting. As you are all aware I am still in the midst of my ongoing fight with CPP Disability, so when I went to the mail box today and there was a letter from them, I got all excited thinking it was my much-anticipated decision! Boy, was I ever wrong! Apparently ALL my personal information affiliated with my claim has been compromised! The letter states that a USB device was lost by an employee and on the USB was my SIN number, personal information and all medical records just to name a few. WTF are you kidding me!!!!

They have advised me to check all my credit cards, my bank account and credit score  to make sure there has been no identity theft and then file a police report. Lets just say that I didn’t need to turn the heat on in my home today, I was the HEAT after I ripped some poor girl a new arsehole (as James puts it) as to how this could happen. I commented that I hope the employee responsible has been adequately reprimanded. I was then told that she could reveal any information regarding this issue as it was a matter of “her” privacy at stake! Really I said, but you don’t give a shit about MY privacy apparently because if you did, this would not have happened! Now MY personal information is floating around out there somewhere! Lets just say that this is not the end of that issue, if they thought I was a bitch on the phone today, it will only get worse if anything does come of this.

So, that was this morning and by noon I thought ok I have adequately dealt with that issue for now so I made my self a cup of chamomile tea with the intention of resting. Wrong again! My financial planner then called to say that things were not going well with my investments and we will have to do some serious damage control to ensure my monthly income from them investments will still be available to me. I don’t work, I retired due to my health issues from Mesh, I am by no means weathly but the monthly income afforded me the luxury of not worrying about paying my bills and mortgage. That is all in jeopardy now and if we don’t get things under control I may have to sell my townhouse within this year…ok, now I felt the slap of reality upside my head, shaking and scared I asked my financial planner if there is a way I can get the “locked in” portion of my investment “unlocked”. He said yes there is but there is a mountain of paper work to be done but because of my health issues there shouldnt be a problem. I can’t take the whole amount as a lump sum but we can access the allotted amount for the year and turn it into a monthly pension. We should know more within the next 2 weeks, which I am sure will be the longest 2 weeks of my life…if the answer is NO, then I am forced to sell. It’s not entirely a bad thing though as the stairs are really becoming an issue and the thought of being in a smaller place is appealing, however I will miss my home…i dont do well with change, I like routine but I think this is one issue I am not going to have to much of a say in.

If anyone had told me just 3 years ago I would  be going through this hellish nightmare I would have laughed at them! Some of it I still can’t quite comprehend as it is so overwhelming some days I just have to find a way to be still and let my mind shut down for a few hours to get some rest.

So Christmas has brought many challenges with it as has the New Year but amongst those challenges there have been many many acts of kindness and love shown my way. I received a card in the mail today with a note from my niece stating she is giving me an hour-long massage treatment through Traditional Hawaiian Healing and Holistic Bodywork. I cried when she stated of all the people she knows I am the one who will appreciate it the most, and she is so right. I need to find ways that are going to enhance my life, not suck the life out of me. My life feels completely turned upside down right now and I need to get it back under control and deal with the ups and downs. I CANNOT and WILL NOT let mesh take EVERYTHING I know and love away from me. I must find my inner strength and find the courage and conviction to fight back with all I am and all I have. I am not a quitter, I am a fighter so if life thinks its thrown me a new curve ball that I can’t handle, well think again, now I am just plain damned pissed off!

There are days I cannot do anything but simply cry…I try not to but I think of my sweet sweet Lily and hope that she doesn’t know “Nana” as the one who can’t get down on the floor and play with her. I guess I have to remind myself that although I may have disabilities that prevent me from doing certain things, I am there in body and love her more than there are words. I then think of my kids, they have seen so much heart ache in their short lives, it is just not fair. They watched their father die from a 6 year Brain Cancer battle and then held his hands as he took his last breath…to much for young adults. Now they watch their mother struggle and I see them struggle with this new lifestyle.

I would also like to add that my Mesh Blog is more about the emotional tolls of Mesh and Lupus and not the factual research side of them. For me, this Blog is an outlet, it doesn’t always replace my tears but it does let my mind take a much-needed “Mesh Lupus” vacation.

“Be strong, be brave, be true. Endure”

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A Memory a Day makes for a Wonderful Year! …

There has been something on my mind for a few weeks now, it is about a New Years Resolution…I’m not even finished my Christmas shopping and I’m working on the New Year! I don’t like to make resolutions as it seems silly to me to say your going to do something and then fail, and believe me, I’ve failed at many of them!

This year I feel confident in my Resolution because it will be fun and enlightening, not just for me but also for my loved ones. I hope this will inspire my many Mesh and Brain tumor friends and my loved ones to follow suit, I sincerely believe it will open your hearts and  your minds to the infinite possibilities of life, all you have to do is believe and have hope.

So, what is this divine plan I am so excited about, it is about being thankful in a world in which it is very easy to forget about where we have been and where we are going…it’s not about the “stuff” we have or how many friends we have, it is about appreciating our lives and the people in our lives and for what we have as opposed to what we don’t have.

I am going to start a “Memory Jar”.  I will buy myself a nice glass jar and decorate it with pictures (this is where I will promote the website, shutterfly! ) of  all the people in my life. I will place it out in the open for all to see and I will be proud and excited to promote it!

The idea is that at the end of everyday, I will write down ONE single thing that happened that day that I am thankful for and I will fold that piece of paper up and put it in my memory jar. It doesn’t necessarily have to be something that happened, it can be something about you or a loved one that you are thankful for but I think the idea of writing about something thankful is that in a very negative world we will have to be acutely aware of our lives and will be inspired to find the GOOD in our life! It could be something as simple as someone calls you to see how you are or vice versa.

Imagine how it will feel at the end of the year to pull out all your memories and find that even though you think it may have been a crappy year, you will have 365 pieces of paper that will tell you otherwise! I think it is to easy to focus on the negative so I believe this will help me to focus on the accomplishments!

I was even thinking that in the New Year I may choose to read only one memory a day so that each day for the rest of the year I will have something to look forward to (especially if I am having a hard day) and be thankful for!

So everybody get out their jars and start making some memories!!!!

“Live, laugh and love with no regrets”

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

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”

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