I'm All Meshed Up

Bladder Mesh Surgery Gone Wrong

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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