Yep! Its true, I’m still alive! I just haven’t written in a while and it’s time to update. Lots happened in 2014.
First, I finally got an appointment to see a genetic counsellor to see if I could get Long QT genetic testing done.
On May 21, 2014 I went to the Alberta Health genetic clinic and talked with Tara the genetic counsellor about my case. With reviewing my medical history and collapse, they didn’t see why I wouldn’t be approved for Alberta Health to pay for the test. They also said it would take a few weeks to find out from the board if I would be approved and if I was then it would take a few months for the results.
After waiting over 2 years to have this test done, I was so happy to have someone help me get this going. I left the clinic emotional because over 2 years since my collapse I was finally going to get answers. When I shared my story to the counsellor I thought I wouldn’t be emotional. But I was. As my good friend once told me emotions are like waves of the ocean, sometimes they will be calm at bay and sometimes rough. It’s true! Some days I don’t even think about it and I’m fine. But when something special happens I get emotional and thankful I’m alive!
For a few weeks after the appointment I started to worry……..in other words I started having anxiety. I worried… what if I wasn’t approved? How would we pay for it? What if I have Long QT? What if I didn’t?? What would be my next step? Would there be another test to find out answers? The list went on and on.
I was up and down. I was beginning to feel anxiety that I had after my collapse, so I decided to see my Dr and ask him if I should see a psychologist. He thought that I should and meet with one he highly recommended. I ended having a phone session with the psychologist and what a difference that made. She was so helpful. She told me that it was normal to have these anxieties with a trauma I had. I felt relieved! I really did think I was going crazy! She said I could call her anytime if I felt I needed to, but after that conversation I knew I wouldn’t need to. I knew there wasn’t anything I could do until I heard from the clinic with the answers.
June 10, I received a phone call from Tara telling me, I’m approved!!!! The board was going to do the test! I was so happy!! Tara said that I had to have my blood drawn so they could test it and we would get the results in a few months. She predicted the fall sometime. I quickly went got my blood drawn that day! I didn’t want to delay it any longer.
On September 4, I found out my results of the test……..it was good news and bad in a way, the good news was that I didn’t test positive for the Long QT gene, and our children/my siblings do not have the gene either. They also will not have to have ICD’s implanted for precautionary measures which is a relief! But the bad news is that there isn’t any other testing for the heart that I can have done and so that gives me no real concrete answers to why my collapse happened. So it gave me mixed feelings not that I wanted to have Long QT but I just wanted to have an answer. After all we are human and we like to know answers.
So in a nut shell, I am still without answers but I am so blessed being alive!!! I’m thankful for a lot of things, we have three beautiful children, a granddaughter who was born on April 9/14 and one more grandchild on the way! What else could I ask for!
2014 was a good year!
I thought I was doing well living a “normal life”, watching my health doing light exercises. Well apparently, I am not. Why? Well a few months ago, I had to go to the hospital. I was having severe chest pains. At first when I felt this sharp pain I ignored it. I had ignored it because I thought “oh it’s nothing”. ( I know what you’re thinking….stupid why are you ignoring chest pains??) I had ignored this pain for a couple of hours. It was our anniversary, DC and I decided to go out for supper.
While we were at supper I continued to have these sharp pains, it felt like it was shooting directly to the heart. DC saw me jump one time when I had really bad one and asked me if I had the hiccups. I replied no, and said I’ve had these sharp pains in the chest. DC asked me if we should go to the hospital, and I of course said no I’m fine. But DC knew better and said he was taking me to the hospital.
When we finished our supper, I know again…stupid waiting until we finished our supper but I didn’t want to go. I was so nervous. I was being stubborn. When we arrived to the Emergency, the nurse asked what was my reason for coming in. I told her that I had chest pains. She looked at me with a puzzled face, like “really?” I told her that I have a history of heart problems and an ICD. The nurse asked me questions about my symptoms and said to go straight thru the emergency so I could be looked at right away.
We went in and the emergency nurse immediately put me in a room told me to undress so she could put the heart monitor on me. Then she immediately put an IV in, this all happened within 10 mins. I couldn’t believe how quickly they were attending to me. They told me they take any chest pain very seriously and do not take any chances. Well this made me worry, I started to panic and I started to cry because I didn’t want something to happen again. Made me think about when I first collapsed and when I was shocked. All the emotions of that made me cry and I realized I wasn’t over it. I wasn’t over the trauma.
The doctor came in and did an assessment, checked my heart, ordered a blood test to make sure I didn’t have a blood clot forming, sent me for an ECG. Nothing showed any signs of a heart attack or stroke, the next thing the doctor suggested that it might be my lead from the ICD. He said that it might be possible the lead moved and is giving me little electrical shocks.
I started to panic, I looked at DC and just burst in to tears. I did not want to hear that! The doctor said I needed a CT scan done to see if the lead moved but couldn’t do it until the morning when the tech would come in. DC and I went home for a few hours to sleep, which I didn’t get much of. I just of course worried. Finally morning came and we went back to the hospital for the scan.
After a few hours at the hospital I had a cardiologist come look at the scan results and told me that the ICD did not move! I was so relieved!! But we still didn’t know why I was getting sharp chest pains until after one of the nurses said she had similar pains but it was because she was exercising too hard. Well! It was like a doorbell went ding! In my brain and I knew! I knew why I was getting the pain! I was helping DC put boards down for our deck. I remembered, I was holding the board too long and I said to DC to hurry because it was making my arm sore.
The doctor had given me some medication to help with the pain but said if it still persisted I was to come back. After we left the hospital, I couldn’t believe by holding one board would hurt me that much and made me realize, I am still not over it and it will be one day at a time……….
I know I haven’t written in a long while. I haven’t been in the mood to write.
Today, January 24th…….is my lucky day. I can’t believe it’s been 2 years! It’s amazing how time goes by so quickly and yet it feels like it was yesterday. I have been quite emotional this past week coming up to my anniversary. I think I always will not because it’s sad, but because I am so grateful.
It’s not a day that goes by I don’t think about the day of my collapse (in a good way). I think about how lucky I was at the right place, the right time and how lucky it was to have the lifeguards doing their first aid meeting. The lifeguards will always be apart of my life for what they did for me. Gave me life. Again.
Lots have happened in the past 2 years, I got to drive again, ran a 5k and walked another, watched our daughter D graduate, moved to another province, was apart from DC for 9 months because we couldn’t sell our house, sold our house, got clearance to go back to work again, travelled, and to become grandparents.
I can look forward to the many years ahead, to watch my children grow and have their own families. I have learned life is short and to not take it for granted.
I am lucky!
Isn’t it amazing how the mind works??
It’s amazing how the brain can tell your body what to do.
It’s amazing how stress can affect your body.
I am just figuring this all out. I know what you’re thinking……”didn’t you know this?” Well I did, but just didn’t realize it, until a few weeks ago. My brother K asked me in the hospital (before I had my ICD implanted), how was I going to live the rest of my life? Was I going to go back to doing the things I always did (with Dr’s permission of course) or was I going to be afraid. I promised I wouldn’t be afraid.
Easier said than done…………..
I was doing really good in the beginning. After I healed and felt stronger, I told myself “oh I’m going to be fine” “this isn’t so bad” “I’ll be doing all the things I did before in no time”.
After my shock back in March 2012, it changed my whole perceptive on that promise. Like I said in another post. I was afraid. I was afraid of everything. It was hard to tell my mind, my body is okay and I could do things again like drive, and start running.
My first hurdle was driving. Driving was something I always had a battle with. I wasn’t like all teenagers who knew at 16 wanted their license right away. Having deaf parents made me afraid of driving. Why? Well when one of my parents would drive they would be like any parent and talk while driving. However, my parents couldn’t talk, so they would have to sign with their hands. When they would do this, they would have one hand on the steering wheel and the other signing to me. I don’t know how many times I would sign “stop signing” “watch the road”. Some days I don’t know how we ever survived the roads hahaha. You would think I’d want to drive them around instead. But nope! I was not comfortable getting my license.
I was 18 when I decided to get my learners. I had my learners for 3 years and finally got my license. When I started driving, I couldn’t believe the freedom I had! I loved it!! I remember thinking why I didn’t get it sooner? Every chance I had I would drive, whether it was just to the store or long distance. I loved driving!
I couldn’t drive for 7 months after my collapse and it was very hard losing that independence. But I did get used to having DC drive me around. It made me feel safe knowing I wouldn’t be responsible hurting anyone on the road if I was driving. When I was cleared to drive, I was so nervous. I felt like I was 18 learning all over again. I called the pacemaker clinic a few times just to confirm I could drive again. They probably thought “oh goodness it’s her again” hahaha, but I was really nervous. What if I had a therapy while driving?? The best thing the Nurse said to me was “you’re the safest person on the road, you get a 16 second warning before you receive a therapy, others don’t have any warning at all, it just happens”. I remember thinking 16 seconds?? That’s not a lot of time, but in reality it actually is. I have been driving for the last 10 months now, and I’m not going to lie, at first I had anxiety if people were driving too close to my back bumper. What if I had to slam my breaks in a hurry and they would hit me? But I realized they would have to pay attention or hit me.
Running…….the second hurdle, just before Christmas, I was told by my doctor I could slowly start getting back into running. He said, I needed to have a heart monitor with a strap to monitor my heart rate. Also the beta-blocker I am taking my heart rate shouldn’t rise more than 150. I was so happy to hear this and was determinded to start running. So I thought I should start doing Yoga first to help the breathing. I did Yoga for three months. During that time I had researched all kinds of heart monitors. I didn’t realize how many there were and which ones I couldn’t use because some of them have magnets inside them. I decided to call St. Jude Medical (the company who made my ICD) to see what they recommended. They told me the ICD I have they tested with the Polar heart rate monitors. So I went and bought myself one.
I thought I had the breathing down pretty good, so I started to run. My first time running was so exhilarating! I did what the doctor said started off slow. I used the Couch to 5K app like I had two years ago. I was doing great! In the first two weeks of three days a week running, I decided to register for a 5K run in June. My daughter C is joining me for this run.
After the fourth week of running, I could tell the running was getting harder. The runs were getting more intense with running longer and walking shorter. It was really hard. I could feel my heart race faster, but I would check my heart rate often and it was fine. The next week I decided to go back a week and make it easier for myself but when I started to run I looked at my heart rate and it jumped to 162! It scared me! When I was controlling it between 115-130. So I stopped myself and stood to breathe and relax myself. Once I had gotten it back down I tried again but I would constantly watch my monitor.
The next run that week I followed the run on the app but found it was still too hard. So I decided to use a timer. I decided I would run 3 mins and walk 1 min. The first time I ran the 3 min walk 1 I thought I was doing great, I was controlling my breathing and my HR(heart rate). The second time I went I noticed that my HR went to 167! I started to get nervous and tried slowing down and it was good. My third time running was not so good. My mind was already playing tricks on me. My HR jumped to 172! I stopped immediately! I sat down on the ground and started breathing in and out to have the rate slow down. It went down but I was scared to start running again so I walked the rest. The fourth time I went, I was nervous. I didn’t want my HR to go up again like last time. So I took my time on the pace and was breathing in and out. However, that day was the highest my HR went since my collapse. It went to 185! That really scared me. I stopped sat on the ground again. Being at 185 was not far away from being at 200 when I would receive a therapy. When I got my HR down I decided to walk the rest again.
I thought I should see if the heart rate monitor strap was right. Maybe it wasn’t going as high it showed. So I did a home transmission to see how right it was. I sent the transmission and got a call the next morning from the pacemaker clinic. The nurse said she had looked at my transmission was very concerned. I told her, I had started running and bought a heart strap wanted to see if it was right. Those four HR’s were right, in fact she said it was bang on! she said she needed to send it to the Doctor. Right at that moment I thought uh oh! They are going to tell me that I can’t run anymore. When the doctor called me back, he recommended I try to control my HR going no higher than 150 or I will no longer be able to run again. He suggested I start slower like walking or speed walking until I figure out how to control the breathing and HR.
Since then, which is about three weeks ago, I have tried to run and control my HR. Unfortunately it is not staying low enough. But I am determined to continue. My mind isn’t helping. I had mentioned I registered for a 5K run and it’s this Saturday. I decided I am going to do what I can, whether I run a little, most of it or walk it. As long as I am doing it and having fun, that’s the most important to me now. Telling your mind to not worry about things your body does is difficult and it’s something I have to work on.
Today is the one year anniversary of my blog, I can’t believe how fast time has gone by. I remember my first blog post, and how nervous I was to have people read my thoughts. As I read back on my first post, I think how much I have changed since then. I am no longer nervous about people reading my thoughts, it’s been a challenging road this journey I am taking but all for the good.
In the past few weeks I have had some tough one year “anniversaries”. Obvious, major one was the one year the day of my collapse. I know I have said I am no longer afraid, which is true I am not, but I did have some emotions to work through. I’m not going to lie, the day was emotional, I had moments when I would be laughing or crying. I would cry because I was so lucky to have been at the right place at the right time. I would cry because I was sad to know that my loved ones who were at the “scene” will never forget. I would laugh, remembering some of my story and how there were some funny moments. Like when I was upset the lifeguards ripped my favourite shirt and for everyone to see me in the open, when clearly it was important or when DC bought a movie for us to watch in the hospital, to keep our spirits up and seeing two men cry. Every time I see the cover of that movie I smile and think of DC and K, how they both were trying to make things better for me.
The next anniversary was the day they put the ICD in, I wasn’t all that emotional for that but it was an anniversary. Next one was the day I thanked the lifeguards. I still think of them everyday, again I know it was their “job” but they will always be a part of my life and I will always thank them for doing their job.
Another major anniversary was the death of my Dad. I was in a different kind of mood that day. I would try not to think about it but then I would have moments when I couldn’t stop thinking about it. How it went so fast and I wasn’t there in “time” to say goodbye. I said I didn’t have any regrets, but that isn’t true. The one and only regret, I have by not being there in time to say goodbye is, I wanted him to know I was okay, in person. I know he knew I collapsed and I was okay but I wished he could have seen me before he left. I know he is in a better place and I only hope he is happy.
I will always have anniversaries, we all do. The trick is how we deal with them and remember those who have touched our lives makes us stronger.
A year ago today, I learned very quickly life is short.
A year ago today, I changed.
A year ago today was the last time I ran on a treadmill.
A year ago today, I had faced something I was afraid of.
It’s been a fear since I was little.
A fear…… I am sure I have in common with many people.
A fear…….of not being able to see, hear or talk.
A fear…… of not being able to see my children get married one day or have children of their own.
A fear…… that no one would remember me.
I remember a few years back I had watched an episode of the Montel Williams show. He had a guest named Sylvia Browne on, I know what you’re thinking “the psychic??’ Yes a psychic haha. Anyways, I remember that episode because Sylvia had a person ask why she was afraid of dying and what did it mean? Sylvia said that people are afraid of dying because it’s not existing on earth. When I heard her say that, I thought “ya right”. But since January 24,2012, I have totally changed my opinion on death.
My sister-in-law M sent me a video of my nephews Little A and Mr.T. Little A (who was 2 1/2 at the time) had missed me and wanted to tell me, so M started to record. Little A said he missed me and wanted me to come “out of Manitoba”, and in the back ground Mr.T (who is 5) had started to sing a song “I miss her so much, I don’t want her to leave our hearts, I love my Auntie S, my Auntie”. When he sang that, it made me realize, life isn’t just here on earth or about seeing that person all the time. It’s always going to exist in people’s thoughts and in their hearts. That will never “die”.
I believe when it’s your time, it’s your time.
A year ago today wasn’t my time and I am still here for a reason.
I am no longer afraid of not being able to see my children get married and have kids of their own because they will tell their loved ones who I am.
I am no longer afraid no one would remember me because my loved ones will.
I know it’s not going to be easy leaving but I know my family will be okay, and they will always be there for each other. Even thou I am not going to be there physically, I will always be there.
For that I am no longer afraid…..
Finally it is over! I am so glad to see it end!
What a year it has been for my family and I.
It’s been a hard year. A year with ups and downs.
2012……… the year they said the world was going to end.
2012……… the year with the date 12/12/12
2012……… the year I learned more life lessons
2012……… the year I am thankful
2012……….the year I lost my father
2012……….the year I grew stronger
I read this quote on Pinterest
“and once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in.”
I love this quote because I feel that’s exactly how this past year has been for me. 2012 was hard, but the thing I learned the most this past year is that life is short. We need to remember to tell that special person(s) you love them, even if they say they know you do, even if you think it’s silly, or haven’t said it, or you don’t think it’s important, because if you suddenly do happen to leave this earth without saying it, the person (s) you left behind will always wonder……
They say the number 13 is lucky.
I hope 2013 will be the year of luck for my family and I.
2013……….the year we are healthy
2013……….the year of happiness
2013……….the year we never forget
2013……….the year we are all stronger
2013……….the year we will spend more time together
2013……….the year of new beginnings
Happy New Year!
My New Year’s Resolution this year is to spend more time with family and get back into doing the things I love!