and another year comes to a close

I am feeling very emotional today, I can’t seem to stop crying, but they aren’t tear of sadness, they are tears of reflection and gratitude for last year and tears of hope for the future.

I lost my Dad this year.  He physically left this earth on April 9 of 2015 with his family by his side, but he had left us mentally long before that.  He had Alzheimer’s and had quickly slipped away from us into his own world where he no longer knew our names.  The disease took him quickly and not a day goes by that I don’t think about him and I miss him more than I ever could have imagined.

I have had a year of relative stability health wise, that’s not to say that there haven’t been challenging days, but no shocks from my device is a good thing.  I still have days where I am tired and end up sleeping a lot, days that I am afraid to leave the house and days that anxiety is super high but I have managed to accomplish some pretty cool things despite all of that.

In 2015 I became a volunteer.  Last April, I helped raise funds for The Art Studios a place that I love and believe in, they have been there to help me face my issues with Mental Illness by offering free art therapy and a safe place for me to learn and be creative.  They have gotten me out of the house during times that I would not have made the effort and I have been able to lose myself in painting and pottery.  I am a better person because of art.

I also became a Patient Voice.  I have been given a couple of opportunities to contribute my voice and experience within the health care system to help makes things better.  One of the things that I am very proud of is sitting on a committee of dedicated human beings who want to make screening for people and families at risk of Sudden Cardiac Arrest more accessible.  I am fortunate to live in the city of Vancouver where I have access to the very best doctors and clinics, there are many people across Canada who do not have that same kind of access.  The goal of this committee is to make the experience of all Cardiac Arrest patients universal across the country, allowing them to be able to get the resources they need and to get tested for the many Inherited Rhythm Disorders in order to save lives.

I was also asked to contribute as a patient voice to a monthly newsletter called The Inherited Heart Rhythm Times.  My very first article was on Stress and Creativity.  It was a cool moment for me to see my little article in print and to know that people enjoyed reading it. These are the things that help me feel productive again, they don’t require a lot of my time, but it helps me to know that I am giving back and helping others and  I am focusing on good things.

The very best thing is that I found a way to soften some of the hard places within myself that I have built up over the years and learned to LOVE more.  I have learned that gratitude is a preferable way to live my life and that even bad things have a silver lining.  I’m still not perfect, but life feels a whole lot more hopeful when you embrace the positive.

So, today, tell the people you love that they are important to you, look in the mirror, deep into your own eyes and tell yourself you are perfect as you are and forgive all the wrongs you think have been done to you.  Let it all go, wipe the slate clean, start the new year fresh and put your whole heart into it.

2016 is going to be an awesome year.

My heart drug is an orphan?

As you know, December and my procedure did not go even remotely like we thought it would, it has been extremely difficult getting over that experience.  I work at it every single day, squashing back the daily fear and anxiety that has become an all to familiar addition to my daily life, some days it works, others not so much.  At the 6 week check-up on my new device, the subject of switching to a new experimental drug was approached, a drug that was used to treat another disease that was recently found to be somewhat successful at treating patients like me with Idiopathic Ventricular Fibrillation, my answer was and emphatic NO.  I was no where near either physically, but most of all mentally ready to venture into uncharted territory once again, just the thought of another shock put me over the edge, the thought of it would almost put me into hysterics,  there was no way I was having any part of the unknown, I took the “wait and see” attitude and decided to take my chances on the bumped up dose of my existing medication, Quinidine.

 

That was January 23.  On that day, I took my amended prescription to the pharmacy and asked them to fill it right away.  Quinidine is a special access drug, meaning that every time I need to have it filled, there is special paperwork that has to be forwarded to Health Canada in order for the hospital to bring it into the country for me.  I never know how long that process is going to take, so I always leave myself a lot of leeway just in case there is a snag somewhere, it’s happened before, lesson learned.  After waiting a couple of weeks without a call saying “come and get it”, I called to see what was taking so long and to my surprise was told that they were no longer able to get a supply,  it was on back order.  *face palm*  back order?  ffs.  I took quick stock of my supply and figured I would have enough to last me for 2 weeks, plenty of time I told myself.  Every day I did the math, after all, I know all too well from my experience at Christmas that I would be in trouble about 24 hours after stopping the drug, there is no way I wanted that to happen again.  When I got down to 5 days left, I had a discussion with one of my Cardiologists as to what the game plan was and his explanation of the situation did not make me feel any warm and fuzzies.  This first part I already knew, the drug that keeps my heart from going all arrhythmic is on the worldwide shortage list, it is an old school drug that has been replaced by new and supposedly improved drugs which my heart does not like and do not work for me.  In short, my drug does not make enough profit for pharmaceutical companies so they can just arbitrarily decide to stop making  it, never mind that it is saving some lives.   It’s also referred to as a Orphan drug. These drugs help people with rare diseases such as mine.

 

Here is a little excerpt from Wikipedia “Since the market for any drug with such a limited application scope would, by definition, be small and thus largely unprofitable for pharmaceutical companies, government intervention is often required to motivate a manufacturer to address the need for an orphan drug.”  According to an article in the Vancouver Sun dated January 18, 2013, “Canada is one of the last countries in the industrial world without a policy”.  The government’s Health Canada website says in a press release from October of 2012 that “a modern framework for the designation, authorization and monitoring of orphan drugs that will provide a significant benefit to Canadians with rare diseases and spur research and innovation in Canada.” and “The proposed framework is in the final design stages and will soon be targeted for public consultation. Comments and feedback gathered during the consultation will be incorporated into a final version of the proposal.” but there is no update to this page which leads me to believe that this framework has never gone any further in it’s development.

 

So, back to my conversation with my Cardiologist.  They recently stopped production of Quinidine in the US  where my supply was coming from, leaving them with two European suppliers to approach.  He worked the phones talking with Health Canada as well as some higher ups in the drug companies still making my drug and the first supplier, in Italy I believe, was unable to supply Canada, they just did not make enough, he then called the 2nd company, in Egypt, the plan was for them to supply the drug and we could expect a supply to arrive “in a perfect world” the day after my personal supply was to run out.  In the meantime, the pharmacy had a number of tablets that had expired and the doctor agreed that we could use that supply to hold me over until fresh supplies arrived.  I picked up a prescription for 28, enough to last me 7 days which based on the information, would be enough.  Today I am down to 8 tablets, I will be out as of 11 pm tomorrow night.  Needless to say, I have been freaking out, my bag is packed and I was ready, willing and able to park myself on the doorstep of the Emergency Room until they admitted me starting tomorrow night.  I was awake at 5 am this morning, very high anxiety, I could not sleep.  I finally got up and I watched the clock tick down until I could call my Cardiologist’s office to let them know that I was almost out again, WHERE IS MY SUPPLY!?!?!  At 1 pm today, I got a call back, they had found another 50 expired tabs in stock, the pharmacy would call me when they were ready to be picked up.  I was also told that they were still working on a regular supply, honestly, I really don’t want to have to get on this emotional anxiety roller coaster again, which is highly possible if they don’t get a reliable source worked out somehow. *fingers crossed*

 

The past weeks have been tumultuous and stressful, I have not been able to focus on very much, it’s so hard not being able to control what is going on and making any kind of short term plans hinge on will I be able to meet the commitment.  I take one day at a time and take the fun when I can.

 

When I think about all the stupid shit I used to worry about before all this happened, I give my head a shake, I had no idea that there were far more important things coming, like, “will I be able to get the drugs that keep me alive? It really puts things into perspective, and I want to remind you again to be grateful every day you open your eyes and never take anything for granted.  Oh, and laugh LOTS!  even if it is at yourself!  and LOVE like nobody’s business!!!

 

I want so bad not to be a hard luck story going forward, I am trying hard to stay positive, and to see the silver lining, but man, some days it is just not possible.  I will continue to fight, I will continue to lend my voice any where it can be heard for the cause of the orphan drug and I will continue to share my story in hopes that it will help someone else.

 

“get on with your life” they say…well, I’m trying to, I just have to keep dodging these roadblocks.

 

Thankfully I am resilient.

 

 

 

 

 

 

I’m getting bettah…

I am not sure I will ever get used to the fact that I need to have a piece of metal in my chest to help keep me safe and alive.  It’s is still very bizarre to me.

 

It’s been over 2 years since the ICD was implanted into my chest, at times it amazes me with the whole “wonder of modern medicine” thing and at times it depresses the living hell out of me, my life changed forever with the events of January 23, 2012, and I don’t like it one bit.  Mind you, the journey I have been on since that date has been one with lots of terrible lows and not so many highs.  I have dealt with so much.  The physical recovery from the event took a very long time but recovery from the mental aspect has taken much longer and I still very actively deal with it to this day.  I have had to mourn the loss of the life I had before this along with depression and anxiety and PTSD.  I have had to drive myself nuts trying to figure out my life purpose, after all, I came back from the dead, there MUST be a reason.  Then of course, all the woulda, shoulda, couldas, could I have prevented this from happening if I had only made some changes along the way.  There were also really dark times, the times when I wanted to just die and get it all over with, not that I really wanted to leave this earth but I figured it was a lot less painful than what I was having to go through.  I obsessed over dying, I was so afraid that I would be forgotten, that my family and friends would just pick up and carry on without me.  Then I would remember all the times that I thought of loved ones who have left  and I would realize that they go on because I think of them and the interactions I have had with them in my life.  It was with this realization that I decided that I needed to change the kind of person I felt I was, I wanted people to have warm and fuzzy thoughts about me.  I wanted them to know how I felt about them, how much they meant to me in my life, I wanted them to know that I had a happy life and that the love and support they gave me made a difference.  For someone who could hold a grudge for a very long time, this was a whole new way of life for me.  I decided to forgive myself and others for wrongs both real and imagined, and I decided to love myself and to stop the cycle of negative thoughts that reside in my head.  I started being grateful every day for the good things in my life instead of focusing on the bad, I took up meditation and walks in nature and slowly but surely I felt a shift.  I started reading about energy and raising my vibration and healing gemstones and I started accupuncture treatments and I joined a group where we discuss spirituality in a non religious way.  Today, I am a different person, I feel like all of the hard spots that have built up over the years have softened, all I need to do is keep working.

 

I still have challenges, it’s a constant dance of two steps forward, one step back but the steps back aren’t quite as far as they used to be.   I have family and friends and a group of medical professionals who are helping get life back on track  There are times when I get frustrated because I don’t think I am making the progress I should but then I have a day when I realize how very far I have come.  The heart issues are very much interconnected with my mental health, they feed off each other in a circular motion, but I have come to realize that as corny as it sounds, one day at a time.

 

A  friend once described me as cloudy with sunny breaks, today Douglas and I had a conversation about this and he thinks that a more apt description of me these days is sunny with cloudy breaks…now that’s progress and I will take it.