Mental Health: More needs to be done

This is my first blog in a very, very long time. I have been busy surviving, living life and trying to make sense of the world these days.

What moves me to write today, is a recent experience I have had in the realm of Mental Health and getting the help I need.

For those of you not familiar with my story, I survived an unexplained Sudden Cardiac Arrest in January of 2012 that resulted in the implanting of an internal defibrillator. The next 3 years was a horror story of problems, medication changes, heart stops and ultimately shocks from my device. Over 120 times. I have been “stable” now for just over 2 years but my mental health issues hang on tightly, I just can’t seem to get past the trauma. For the past 5 years, I have struggled with Severe Anxiety, Post Traumatic Stress Disorder and Depression. While I have some of the best arrhythmia experts in their field responsible for the care of my heart, finding the help I need within our Canadian Health Care System to deal with the mental fallout has been a disaster.

There was very little in respect to mental health resources available to me in the big city of Vancouver, one on one therapy to get the real help I needed was available for upwards of $150.00 an hour, impossible on a fixed income. I could find cheaper therapy, but it entailed students working towards their degree and they were available to me for a few weeks or a few months at best, then I had to start all over with a new person. I was able to take advantage of some art therapy, which I found very helpful, but that was very short term as well. It’s been very frustrating especially with all the awareness being raised around mental health issues these days.

My husband and I recently relocated to Nanaimo on Vancouver Island, we were desperately in need of more affordable living, some peace and quiet and although it meant leaving the safety net of doctors and hospitals who intimately familiar with my history, we really didn’t have much choice, we had to go somewhere else.

So, enter a new Psychiatrist. In order to take advantage of the mental health resources available in our new city, I had to be referred into the system here in Nanaimo. The wait time to see the doctor was 2 months, to date, I have only been referred to a Cognative Behavioural Therapy Group it’s only been 2 weeks so I can’t attest to it’s effectiveness. Last week, I had a followup visit with the Psychiatrist after 4 months in the system, our conversation is the reason I have felt compelled to write this blog….

I should also mention that an anti-depressant named Cipralex was one of the culprits assumed in the cause of my Unexplained Cardiac Arrest, the drug, as some anti-depressants do, lengthened my QT Interval and my current heart drug Quinidine is not very compatible with other drugs.  I am ABSOLUTELY TERRIFIED of taking any additional drugs, so, imagine my surprise when I was presented with a prescription for Lamotrigine along with a study assuring me that this drug did not prolong QTc. As I sat there horrified at the thought of having a drug I did not want or ask for pushed on me, the doctor talked glowingly about all the good things it could do for my anxiety.  “It has been known to erase all PTSD symptoms” he said. This drug is used to treat epilepsy and when it was discovered that it made people taking it “happy” they decided to try it on patients with Bipolar disorder.  The drug comes with a Black Box Warning about life threatening skin reactions such as Stevens-Johnson Disorder and other horrifying things. Sign me UP!

I find it totally irresponsible for a doctor to give a patient who has been through as much as I have and has been told of the consequences I face by taking a drug that is not compatible with my heart medication to hand over a prescription and expect me to willingly have it filled.  He seemed quite surprised when I told him NO!  He told me he thought my only criteria for taking something was that it did not affect my QT interval.  WRONG!  He seemed quite proud of himself for finding the “special” drug just for me!  WOW!  So much for my hope of finally getting some of the help I so badly need.

This experience has been my call to action, I think that the mental health system has it all wrong.  I know there are people out there who require medication, I used to follow along until I died that day on my dining room floor, but I will no longer be are part of this “drugged” society.  I think they should offer more yoga, meditation, mindfulness, music and art therapy classes and encourage people to spend more time out in nature while they get their free “one on one” help to fill in the gaps and less medication. Kids should be taught these coping skills as soon as they start kindergarten, it will help them be more resilient as they grow up and allow them to have some tools as adults, just in case a curve-ball is thrown their way. It would take a huge burden off of the health care system.

It was a light-bulb moment.  I have to stop relying on a system that has failed me and take matters into my own hands.  I will have to search out the support I need myself, if I wait around for it to help me, I will never get better.

wish me luck.

 

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Eight months ago yesterday…

Eight months ago yesterday, I had my new ICD implanted after a very hairy experience in Victoria.  I suffered a lot of shocks and suffered a lot of trauma during the 5 days that I was there, but here I am, 8 months later, shock free.  Thankfully.

It’s a feat yes that the time has passed, but it has not all been easy.  There are nights when I am afraid to go to bed and days that I am terrified to leave the couch.  I still have many, many, sometimes hard PVCs  and although my device has been checked a few times, there is no record of anything sustained.  Doesn’t mean I don’t feel them and that they don’t scare the bejeezus out of me.

It’s hard knowing that at any moment, things could go wrong.  One beat in the wrong direction, and I reset to zero.  I try not to dwell on that though. I think that my biggest fear is that something will happen during the night, and for some reason, this new device, yet unproven will not do what it is supposed to do.  My next biggest fear is that it will happen on one of those rare times that I do something on my own, and someone will hurt me while trying to help, or that I won’t get to a safe position in time.  So many bad scenarios run around in my head, so much anxiety and stress around all of this.

My experience last December did a lot of psychological damage that has not yet subsided.  PTSD rules my world and it’s hard to forget all I have been through.  I have flashbacks, nightmares and even a few phantom shocks where I wake up startled feeling like I have been zapped.  Even smells sometimes will set me off and I am very intolerant of noise of any kind.

Now,I have to pay attention to how hard I push myself.  I can’t get too tired, too stressed, too eaten up with anxiety or my heart rebels.  I have to be super compliant when taking my meds every 6 hours so when that alarm rings at 5 am I can’t just roll over and go back to sleep,  I have to take that pill. I have become super vigilant with my body, I feel and analyze every single thing.  I am tired, all the time and often need to take afternoon naps.  I get these dark circles underneath my eyes, I know it’s time to stop. It’s hard to just…be.

Gratefully, I have found a few things to help me get through the tough times, art, meditation and spending time in nature.  Also, I have an amazing partner in my husband, who puts me often before himself, he makes sure that I don’t sit around feeling sorry for myself.  I still don’t do much on my own or spend much time by myself, I don’t have that kind of confidence yet and wonder if I ever will again.

I do know that am a better person because of all of this. I am learning to focus more on the positive things and to show myself compassion when I am feeling scared and angry.  I am learning to listen to my body and to rest when I need to. I am taking better care of myself which is something I have always had a hard time doing.  I am seeing the silver lining in the things that have happened these past almost 4 years.  I am learning to live like there is no tomorrow.  I have a much softer heart, a more forgiving heart, a more loving heart these days.  I am changed.

It’s been a long, hard, interesting journey, but I am getting there, slowly but surely.

P.S.  One of my most fav songs by Jann Arden is called “Saved”  I have not been saved in a religious sort of way but I have been saved from myself and a life that I have often seen in a negative light.  These lyrics always make me shed happy tears because I feel like I am finally becoming the person I was always meant to be.  It’s never too late.

“Saved”

Lived a good life
Lived a sweet live
Oh, I’ve had the sun on my face
I had fallen to my knees and been amazed
I have walked beneath the brilliance of a perfect sky
Oh I am saved
Saved
Lived a good life
Lived a sweet life
Oh I have a beautiful friend
I am breathless from the mercy of a smile
I am standing on the brink of the most perfect love
Oh I am Saved
Saved
I am saved
I believe
I am not going to be like I was
I have changed
I am saved
I have bitten off the pieces that I did not want
I have torn them into tiny bits of rain
Oh the sun has dried those memories like I knew it would
Oh I am saved
SavedI have bitten off the pieces that I did not want [2x]
Yes, I am saved

Writer(s): Jann Arden Richards

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.

 

Technical Difficulties

The two years since my Sudden Cardiac Arrest have been challenging to say the least.  You hear all the time about people coming back from death experiences with a whole new appreciation for life, for me that was not the case.  Initially, I mean before the shocks started, I went into a deep depression,our life had suddenly changed so much and I was convinced that I lived because I had a purpose, I was in a panic about figuring out what that was.  I spent my days, deep inside myself,shut off from the world trying to figure out what I had to do now that I had a second change.  Once the shocks started, my survival instincts kicked in along with Post Traumatic Stress Disorder, severe anxiety, a fear of going to sleep at night and a fear of leaving the house.  The leaving the house part was two fold, one, I worried that I would experience a shock, from which I always go unconscious and fall and crack my head open and two, I worried that a stranger, in trying to help would hurt me instead. The fear of going to sleep came from worry that the device, after saving me 28 previous times would fail and I would die, every morning I opened my eyes was a relief.  During the 10 months where my heart wouldn’t calm down, I experienced severe physiological damage my brain and body were battered, I had lost a great deal of muscle mass from spending so much time in bed, I was a shadow of my former self. For those 10 months, I had nothing to do but sit around waiting and worrying about the next shock between long stays in the hospital and a total disruption in our life.  It seemed that the meds they were using were making matters worse and just as I was about to go on the heart transplant list, a drug was found to control the arrhythmia, I have been stable now for almost 14 months. 

 

I really wasn’t able to start working on the physiological damage until last September, since my Cardiac Arrest at the beginning of 2012 Douglas and I had spent every single moment of every single day together while he took care of me, we had no time apart for a very long time. We were at a point where we needed to start separating our lives again, we needed to move on with our lives and get back some normalcy, it was time.  I had the chance to take part in a weekly Mindful Meditation group at Vancouver General Hospital and I was determined that this was my chance to gain some of my independence back.  I had so much anxiety around this, but I really had to push my way through it, it was an important step and just making the 40 minute trip there on public transit was daunting and I had to figure out a way that I could get to the class without crumbling from the anxiety. I decided to take a cab, it made both of us feel better.  Ok, so now I’m at VGH, anxious about being around of group of people I didn’t know, worried that I would have a shock and cause a scene, all I could do was cry my way through my introduction. I was a mess and I felt really stupid.  I sat through the rest of the day not saying a word, wishing I could bury myself in a hole.  I called a cab home and despite feeling like a failure, it was the first step and I was relieved.  The day before the next session, the facilitator of the group called me and asked me not to come back, she felt my depression was still too prevalent and that me being in the class would not be good for the others in the group.  I was crushed but not surprised.  One of the things that the facilitator suggested was that I get some one on one counselling and come back at a later date.  That one little baby step I had taken the week earlier lead to another, I found a counsellor I could see within walking distance of our apartment, I started making the weekly trek alone, still anxious but doing it, two steps forward, one step back.  I felt so happy that Douglas could have some time to himself and that I could work at being independent again, if only for a couple of hours a week.  Each week I got more and more confident and the counselling really helped me to process things and see things from other perspectives. I also learned to take things one day at a time and not to rush things and to stop being so hard on myself that I couldn’t just stand up and dust myself off and carry on. 

 

To this day I still experience anxiety, it’s depends on the circumstance now and not all the time.  I still have nighmares from time to time and the flashbacks have slowed down too, things are looking better, how far we have come.  One of the things that has made a huge difference in my mental well being has been mindful meditation.  When I first started it was hard, my mind would wander off a thousand times in a 5 minute session and I had a hard time sticking with it but I kept hearing how successful it could be so I carried on. There are many forms of meditation and I found at first that I had a hard time focusing on my breath so I tried guided meditation or I would put on some ambient music and say positive affirmations for 10 minutes, as long as it quiets the mind.  I find it easier to stay with it these days and I am seeing positive results.  I feel a subtle difference in how I look at the world, how I deal with depression, emotion, fear and anxiety.  I feel calmer, happier and much more positive than I have in a very long time. I’ve realized that I no longer need to mourn for the life that I lost but to live for the one I have been given a second chance at, I am more grateful. I’m coming to terms with my new normal.

 

I still have a way to go but slowly and surely I am changing.  It took death to make me realize how much I want to live the life I am meant to live.  Everyone, including me, deserves to be happy and to shine brightly, changing the negative self talk is probably the hardest to do as it’s so ingrained.  I’m still trying to find my way down this path, but I am more sure than ever that I am headed in the right direction.