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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I haven’t blogged in a little bit but I am ready to get back to it now.  Things have been a little tough lately and I have been having a little trouble keeping positive so trying to flip my circumstances into something positive in a blog was just beyond me for a little while but I am doing my best to yank myself out of this hole.  If fate would just help me out a little bit I sure would appreciate it at this point.  This blog post is going to be a total bummer so if you want a giggle don’t bother reading on.  LOL I do promise to write some fun ones over the next few days to make up for this horrible one.

 

It has been 6 months since I was diagnosed so that means that all of the cancer testing has started all over again.  I have zero fear that they will find cancer but I am just finished with all of this testing.  I know that they are just being safe and looking out for me but trying to do my job, taking care of my children, keeping up with my treatments, while fitting in all of these horrible tests is a real pain in the neck. I am about ready to tell them to only test once a year and roll the dice at this point.  If they have to do one more biopsy I will lose my mind!!!  Last week I was in for a pelvic exam and another breast MRI.  A few weeks before was a colonoscopy and I will be heading in shortly for another mammogram.  I am getting so good at playing Booby Twister now at my breast MRIs that the nurses don’t even have to help me anymore.  http://www.beautifullybrokenblogger.com/you-want-me-to-hang-my-boobs-where/   They also all know me by name where they do the MRI’s which pretty much sums up how many times I have been there.  The nurse doing my IV for the MRI was really inexperienced and nervous this time and I could immediately tell that she was going to mess it up.  The IVIG treatments and meds I’m on cause my veins to collapse so it is hard enough to get an IV going even if you know what you are doing.  Not her fault though so I grinned and made jokes to try and relax her as she attempted to place the IV nine times, that’s right, nine times, followed by nine enormous bruises before she finally had the other nurse give it a try.  While she was sticking me over and over again I was trying to send her calming vibes so that her hand would stop shaking but clearly she wasn’t feeling my calming vibrations. So I ended up black and blue!

 

The worst part was I had my IV treatments just five days after and she left almost no place unbruised for them to attempt to do their IV’s.  Luckily they hit their IV’s first try both days because I was ready to start crying if anyone missed even one more time.  Unfortunately they had to stick it right into a bruise that the nervous nurse had made the week before.  OUCH!!!  My arms were so bruised that the cashier at the grocery store was like “what the hell happened to you???!!!”  LOL   They must have gotten really excited though about hitting my veins the first try because they cranked up my IV speed which meant that I got out of the hospital two hours earlier than normal and resulted in my having three full days of migraines and vomiting.  I was not impressed.  The nurses at the hospital are normally very good about letting me get the meds slowly so I don’t get sick but I have this one nurse and whenever I get her she tries to crank up the IV speed to get me out of there faster.  The results are NEVER good.  I would so rather sit there for an extra two hours instead of feeling like my head and spine are being torn from my body.  She always does it too after I fall asleep from my Benadryl.  Next month I am taping a sign to my chest that says “Don’t turn it up above 150 or I will throw up on you!”

 

I am also back to work full time again with training, lesson planning and other projects and I am so happy and love feeling productive but I am also frustrated when I can’t keep up or am so exhausted at the end of the day that I end up with a high fever and the shakes.  It is such a tough balance because I want to work and I love working with my franchisees and doing my lesson planning but I get frustrated because I really want to do so much more.  We trained a bunch of new franchisees just a few weeks ago.  I trained for two days straight and then slept for two days after that.  They were the kindest and sweetest people too and I loved working with them.  We also have a ton of projects on the go right now and so many franchisees signing at this moment that I am thrilled to pieces but the anxiety that comes along with all of these new changes and projects is a little overwhelming for my body and sends my immune system into a fit.  I will be so excited to have a meeting to hear about all of our projects and by the end of the meeting I have a fever as excitement turns my immune system into a weapon as quickly as stress does.

 

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Then I heard back from my insurance companies about the Rituxan treatments that I need to have and I basically got given the one finger salute and sent on my way.  When I got the letters turning me down I completely lost it.  It was not a pretty moment I must admit.  I am just so tired and could not even imagine putting up a fight with the insurance companies right now.  So I called Danny who instructed the boys, by cell phone, to take their sister to the park so mom could have a moment to lose it.  They did and I had the good pathetic cry that I needed so badly.  I find it so hard that my children are older now and seem to be around at all hours of the night.  I have zero alone time to just lose it or to discuss with Danny what we are going to do.  I don’t want to talk about it in front of the kids because I don’t want them worrying about money or thinking that we are not going to be okay because, in the end, we always manage to squeak by.

 

The problem is that I HAVE to have these treatments.  They are a last resort treatment and I have tried everything else.  My Rheumotologist made it clear to me that this is the way to go and I need to have them.  I am not going into remission on the other medications and they can no longer keep me on that high of a dose of Prednisone without causing damage.  So as I taper my Prednisone my muscles are starting to weaken and I am starting to choke again when I drink and eat.  I am nowhere near as bad as I was this summer but each day I can do a little bit less and I am so afraid that I am headed back to being super sick again.  I also have to take the Rituxan because my heart and lungs are a muscle and once they are damaged they cannot be fixed.  I have been super lucky so far that they have not been damaged but the longer I am not in remission the more likely it is that they eventually will be.

 

The Rituxan treatments are, unfortunately, $10,000 per dose and my insurance companies do not want to cover the cost.  Danny’s company from work has agreed to reconsider if the doctor sends more information, so there is some hope there but when I saw those letters turning me down I really did not see a ray of hope.  Clearly, I can’t afford to pay $10,000 dollars a dose, who could?  Well maybe movie stars or sports stars but we all know that I am not one of those!  I could raise $10,000 for the first dose but what would the point be when I would just have to find another $10,000 dollars for the next one and the one after that.  There is no way that I could keep up without completely altering my family’s life.  Danny and I would both have to take on second jobs to pay for these meds and we would most likely have to sell our house and move into something much smaller.  We considered all angles and all angles really suck.  I also absolutely refuse to take money from anyone else as, with that kind of a financial burden, there is no way I could pay it back and I couldn’t live with that stress hanging over me.  Of course my family has all offered to help out but it would only be a temporary solution and would put everyone into financial distress.  I need to find a permanent solution.  Lord knows I managed to help turn a business into a multi franchise company; I have faced some serious walls and barriers along the way so I most certainly can get myself out of this one.

 

So it all seemed pretty hopeless and terrifying.  I spent a good week crying and avoiding pretty much everyone.  I also lost my temper at everything that moved.  LOL Then I got a grip and reached out for my ray of sunshine, my insurance broker who is a good friend and he took the wheel when I needed him to.  It was like I was sent an angel to help me out when I could no longer deal with it myself.  He told me to leave it with him and he is going to battle for me with my insurance company.  God I hope he wins this one for me but I am just so relieved right now to have someone else fighting for me for a few days while I get ready to kick some insurance butt myself.   I hope he will be successful and I will be able to tell you all that everything will be okay but, until then, if I shout at you because you are walking to slow or cry because my shoe lace is untied please just throw me a hug because I am about ready to crack under the pressure.

 

I know that this sounds like a whole lot of complaining but this blog is the place where I release it all out into the atmosphere so that I can be happy again.  I am already feeling better having put it down on paper.  I also am pretty happy and know that this will all pass as it always does.  So on goes my smile and tomorrow I promise to fill you all in on some of the funnies that have been happening too.  My kids are healthy and happy, I have an awesome husband, I have the cutest dog, I have the best and most hilarious family, I have the very best friends a girl can have, my business is about to take off in a big way, I adore all of my franchisees and they are like family to me and I live in a neighbourhood where everyone waves at me as I drive by.  I also have so many people reading my blogs and cheering me on.  I’ve got this!  XOX

4 Comments

  1. Christy

    8th May 2017 - 7:20 pm

    Theresa if you need ANY help getting some media attention in your fight against your insurance company I’m in! Call me if you think you need a Plan B! Or C,D, etc! Love you!😘

    • Theresa Bertuzzi

      9th May 2017 - 9:51 am

      Thank you so much!!!! I’ll let you know! XOX

  2. Rendi

    9th May 2017 - 10:31 am

    Stay positive!! I wish I could just write you a check for a million dollars!!

    • Theresa Bertuzzi

      9th May 2017 - 4:52 pm

      You are way too sweet!!! I’ll be good! XOX

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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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