About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Life Changing Events

Life Changing Events

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“Kids, did you watch mommy on the news!”  “Yup, the dog did awesome!!!”  That is what I was greeted with as I walked into the house following my daughter’s soccer practice right after the news story on my battle with my insurance companies aired.  Since that day my life has been pretty interesting, eye opening, and completely embarrassing!  LOL No, I have not yet watched the news story myself as I never, ever watch myself on TV.  So as my family rewatched the news story, so my daughter could also see how great the dog did in it, I sat in the bathroom balling my eyes out, because I was so humiliated, with my fingers in my ears and my eyes shut tightly.  I don’t know why I had my eyes shut while I was in the bathroom but it seemed like the right thing to do at the time, like another wall between me and that horrible story.  So, if it was so humiliating why did I do it?  I really did it because I wanted everyone to know that things like this are happening to people every single day and I was hoping that not only would it help other people in similar situations but it may also help me with my end goal to have the insurance companies cover my medications.

 

I had no idea when I woke up that morning that I would be filming a news story within a few hours of getting out of bed.  I was still lying in bed while the children were getting ready because I was suffering a crying jag hang over from balling my heart out the night before after being turned down for insurance once again and blogging about it.  My best buddy from childhood then phoned me up while I was lying there to let me know that she had arranged for CTV to head on over and do a story on my struggle.  I was like “come one, no way would they be interested in my story,” but this call of encouragement was immediately followed by a phone call from Catherine Lathem who told me they were on their way to my house to film.  “Holy Crap she really did manage to get CTV to do a story on me!!!!”  This was immediately followed by panic as I ran downstairs to see my house in complete disarray.  The next 10 minutes were a whirl wind with me frantically throwing things into closets, cupboards and down the basement stairs.  For days afterwards people were looking for things… “Where are the keys to the small car?”  “Check the fridge!”  “Why are their bananas on the basement stairs?”  “Don’t ask!” “Hey, I just found a pair of underwear in the microwave!”  It went on and on.  I still can’t find the downstairs hairbrush to this day.

 

After the frantic cleaning up, I looked down to realize that I was still in my pyjamas.  So I whipped upstairs, well as fast as I can whip upstairs these days, which is more like a brisk walk.  I threw on a dress and my jean jacket because I put on the wrong bra and had to cover up the straps and quickly did a hair brushing and make up.  During this time I texted my brother to ask what I should say as well as my insurance broker because I didn’t want to say anything that was inaccurate.  They advised me to just tell the truth and no more.  Little did they know that I was struggling into clothing and doing makeup while they spoke to me.

 

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We went outside to film the story because I insisted that this would be nicer, really I meant that I didn’t want any of the remaining mess to be shown on TV or the fact that I am missing an entire cutlery drawer in my kitchen do to an unfortunate incident involving a kid hanging from the pull handle.  Although I suppose the fact that I can’t afford to replace a cutlery drawer may up the sympathy factor on my situation.  So we filmed outside and prayed that the rain would hold off.  As we started filming, the large inflatable duck we bought for the kids for Easter kept floating into the shot and we all agreed that with the story of the large rubber ducky that was paid for by the government for the Canada Day Festivities topping the news stories having a large Inflatable rubber ducky constantly making an appearance in my news story may be a little distracting.  So we spent the next few minutes catching and fishing the duck out of the pool.  It was pretty surreal.  I normally watch Catherine on television and now here she was running around my pool deck trying to help me fish a giant rubber ducky out.  The rest of the filming went really smoothly.  Catherine put me right at ease and was amazing at encouraging me to do the story to help others.  I can’t thank my friend Christy or Catherine enough for all they have done for me and the support that they have given me.  They are truly angels on earth and want to help others any way that they can.

I was so confident when I did the news story and then it aired and blew up on social media with everyone sharing it.  Over 2000 people read my blog that day and it was shared hundreds and hundreds of times.  People sent me hundreds of messages and I had trouble keeping up with answering them all.  Everyone was so nice and supportive that it really touched my heart but I was unprepared for the amount of people who would hear the story and it was a little overwhelming.  My poor husband went to the neighborhood grocery store that night to pick something up and came running home announcing “That’s it; we can never leave the house again!”  Apparently he got a lot of feedback at the grocery store!  LOL I myself, went into hiding for a good week until it all blew over.  You see even though I am able to put my story out there in writing I really am very shy when it comes to talking to people in person and I actively try not to be the centre of attention.  I know I have been on television and in media stories quite a bit because of my company but I have always had my best friend and business partner by my side to be my safety wall and buffer from too much attention but in this situation I have to go it alone for the very first time.  Luckily, the attention quickly blew over and everyone that I did run into was so positive and loving that I was only left feeling supported and not embarrassed, although I’m still not watching or listening to any of the stories.  So many people have also gone to bat for me as well.  One of my friends from soccer approached Desjardins asking them to reconsider and so many people from Danny’s work emailed HR asking them to help me out with Sun Life.  They are all doing what they can to try to help me but I have not had success yet.

 

I have now been waiting almost 4 months to start the treatments that I really need and the constant migraines, sick stomach and weight loss is not a great sign.  I know that I don’t look like I have lost weight since I managed to plunk on 20 pounds this winter with the steroids even though I was doing weight watchers but I have lost those 20 pounds in the past three weeks and I can keep nothing down now.  I know that I need to start these treatments so I can start getting well.  My brother is a doctor and he is also encouraging me to start the treatments.  A day does not go by when I am not reminded by a doctor or family friend that I can wake up any day with my lungs filled with fluids and they keep asking me to please just start the treatments without the coverage.  My whole family have all volunteered to dip into savings but I didn’t want to place a burden on anyone.  My plan was to dip into the kids’ university funds to pay for the first treatment and hope that I could make that money back in time.  Then I saw a Go Fund Me Page that had been placed up to help me out.  Apparently my sweet nephew was having none of that and was going to force me into taking help whether I liked it or not.  This kid has a heart of gold and I love him with my whole heart.  I had already turned down many friends and families offers to start a fund me page as my pride would have none of that but it was my nephew that decided he would just do it and not tell me about it as I couldn’t protest what I did not know about.  This lead to another search on Facebook to find that my brother’s company had also decided to do a fund raiser to help me out.  I was blown away by everyone’s kindness and I was so touched when family and friends began contributing but also super humbled to have to actually accept help from others.  I was also angry at my insurance companies for putting me in a place where I needed help.  So many emotions were running through my head when I saw that page and I felt so loved yet so down trodden too that my life has come to this.  I have always prided myself on being able to raise money for the Make a Wish Foundation through my work and loved sponsoring teams and helping others.  I never imagined that I may be on the receiving end one day.  I was so touched though that people were stepping up to help me out and I will promise you all this, I will pay all the help you are giving me forward one day soon.  I will use my good health to continue my charity work and I will earn back that money by growing my company and one day I will pay every penny that was given to me forward to other families in need.  Thank you everyone.  I can’t tell you what it means to me to know that you all have my back. I actually have no words….  So I’ll just end with this… I love you all so much.  XOX

http://www.ctvnews.ca/canada/woman-with-autoimmune-diseases-fighting-for-coverage-of-costly-drug-1.3437154

 

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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