mind over matter

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”.
Ya……right….
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.

no longer afraid

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.

Death…………..

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…..

for granted

I know everyone has taken things for granted.  You all know it’s true, we have all done it. It can’t be helped! We just tend to forget what is important until one day something or someone has affected your life somehow to remember.

As you know, I am learning to live with this ICD everyday. I have read my “manual” so many times to make sure what I am allowed to do and not allowed. I am finding it difficult because I am constantly trying to remember what items have magnets in them.    Magnets????   Yes I said magnets….

I didn’t realize how many things have magnets inside them.

In my “manual” it reads;

General Precautions

Any electrical equipment, appliance, or machine that you use should be in good working order and should be properly grounded. Do not carry magnets or products containing magnets close to your ICD. Avoid holding motor-driven appliances and machine-shop tools closer than necessary to your implant site. When working with tools or appliances, be careful in situations where you could be injured if you become dizzy or receive a therapeutic shock from your ICD. (in a nutshell everything must be properly grounded)

Home Appliances

Assuming they are in good condition and properly grounded, the following items are safe to operate:

Kitchen appliances, including microwave ovens, can openers, blenders, toasters, electric knives. Televisions, VCRs, personal computers, AM/FM radios, remote controls, garage door openers. Major appliances, including washers and dryers, electric stoves, refrigerators, etc. Electric blankets, heating pads.

Avoid holding the following items closer than necessary to your ICD

Hand-held appliances with motors, such as hair dryers and shavers, light shop equipment, such as drills, table saws etc. Transmitters for radio-controlled equipment or toys.

It is generally safe to work around spark-ignited internal combustion engines, such as lawn mowers, leaf blowers, automobiles, etc but limit your exposure to ignition-system parts when they are in operation.

Office Equipment

Most office equipment is safe to operate as long as it is properly grounded and in good working order. This includes computers, electric typewriters, fax machines, pagers and copiers.

Security Systems

Metal detectors and anti-theft systems used in airports, stores and other locations create electromagnetic fields that can interfere with your ICD. Anti-theft systems or Electronic Article Surveillance (EAS) systems such as those used at the entrance/exits or checkout counters of stores, libraries, banks, etc. emit signals that may interact with ICDs. To minimize the possibility of interaction, just walk through the entrances/exits of these establishments at a normal pace and do not linger in these areas. Metal detectors; walking through the metal detector archway will not harm your ICD, however be sure to pass through the archway at a normal pace and avoid lingering in the immediate area. Your ICD has metal inside that may set off the airport security system alarm. If a search with a hand held wand is performed you should stress to the security personnel that the search should be performed quickly and that they should avoid holding the wand over your ICD for a prolonged period.

Industrial Equipment

Large industrial equipment, such as generators and electric motors often generates strong electromagnetic fields that can interfere with your ICD. Avoid standing near large motors or other electromechanical equipment. Make sure that the equipment is properly grounded before working near it.

Medical Equipment

Although most medical equipment will have no effect on your ICD, some may affect its function. Always tell the doctor or nurse that you have an ICD.

The list keeps going on and on, I am not going to type everything and I think you get the picture.

These are a few things that I have taken for granted:

1. When I would go to the airport. Whenever I would go somewhere I didn’t think twice about the security portion of walking through the scanner. Well now, even thou the “manual” says I can go through the archway, my Doctor suggested I didn’t go through because my ICD can set off the alarm. So now I have a pat down every time I go. I have this lovely bright red laminated card that says in capital letters: I HAVE AN IMPLANTABLE DEFIBRILLATOR that I have to carry with my passport. I have learned to appreciate the security personnel more because they have to do their job to make sure we are all safe and yes sometimes it is annoying and takes up time, but I would rather take the time to make sure we are all safe. So the next time you go to the airport and see someone get a pat down try to remember that it’s for your best interest and that it’s not all that fun for the person who is being pat down either.

2. The cell phone. Yes, the cell phone haha. I had to train myself not to use my cell phone on my left ear, it can interfere with my ICD. I also had my cell phone in my purse that I carried on my left side. It was just natural for me to wear it there. But since the implant I was told that I wasn’t allowed to have my cell phone near my ICD. I know this might sound silly but I know you ladies out there will understand, when you have worn your purse on the same side since you started wearing a purse and you put it on the opposite side?? WELL!! that was just so hard for me to get used to! It’s been 10 months since I had my implant, and I have gotten used to wearing my purse on the “right” side now. I even tried wearing my purse on the left side (without the cell phone inside) and it felt weird! haha guess after wearing my purse on the opposite side for 10 months isn’t so bad after all! Oh! Ear phones are another that I cannot have dangling around my neck it can interfere with my ICD. As I said the list goes on! and this is why I said it is difficult to remember all these things but I know in time I will remember what will interfere and what won’t.

I am trying everyday to live “normally” but some days are hard when you know things may just put you in a position you don’t want to be in.

difficult but healing

I know, I thanked the lifeguards for saving my life back in February, but I got a call on May 9th from the BC Ambulance Services letting me know that they were giving the three Lifeguards, the two Paramedics, and to the person who called 911 the Vital Link Award. I was so happy they were going to give them recognition for saving me. The spokesperson told me the ceremony was the following week and wanted to know if I could attend. I really wanted to see them all get the award. I told the spokesperson that I would get back to her by Friday. I had such mixed emotions during the phone call because of the questions they asked in case I wasn’t able to attend, and told me the media would be there. I know that the media wanted to show the community how proud they were of the Lifeguards, and Paramedics but it was just very overwhelming knowing they were going to be there.

I talked with DC and he thought it would be great to see the Lifeguards again since the last time was emotional. Not that it wouldn’t be emotional again but it may help me feel this way of thanking the Lifeguards/Paramedics could help me move on. I talked with my brother K, he said that if I couldn’t attend he would go on my behalf, but thought it would be good for me to come as well. I even asked my Therapist if it would be in my best interest to go. If I could handle it emotionally. She thought that it was wonderful that they were going to give them recognition for their actions, and asked me how I felt.  I told her I thought it was wonderful too, and wanted to be there. That I was thankful too. But I was really nervous because the last time I went to thank them, I had 2 ATP’s before I had even entered the building!! I didn’t want to be so emotional that my ICD would shock me. Dr. H said to remember about letting all the emotions out, not to hold it in, so that it wouldn’t get my heart rate up. It’s something that I am still learning to do. After I had talked with everyone, I knew I had to be there.

On May 15th I flew to BC to be at the award ceremony the next day. It was difficult to leave DC this time because the last time I left him I almost didn’t come back. DC reassured me, told me not to worry (DC couldn’t attend the ceremony) and I would be alright. Even thou I am sure DC at the time was worried too.  I even remember how scared I was flying that day. We had a bit of turbulence, and I remember thinking to myself “calm down S, don’t panic, don’t get your heart rate up!” I didn’t want to have a shock on the plane! I know it was minor turbulence but when you are nervous you think the worst haha.

K, M and I went to the Rec Centre for the ceremony and I couldn’t believe how many people were there! I wasn’t expecting that many people, I figured there was just going to be the three Lifeguards, the two Paramedics, the person who called 911, BC Ambulance Services and the Media. But there were Paramedics, Lifeguards, staff, family, the Radio and the Media. It was overwhelming, but it was great to see all these people who come to see them get the recognition they deserved!

I was really proud of myself, I only cried once when they talked about my story. After the ceremony was over, I met with one of the Paramedic that attended to me that day. (I didn’t meet the Paramedics when I thanked the Lifeguards back in February). She was more emotional than I was! She thought it was wonderful to see I was doing well! She said in all her 18yrs of being a Paramedic, I was the second person she helped save, survive. I was really happy for her knowing she helped me too. I even met one of the Lifeguard’s family member, and I told them how thankful I was for their daughter that day. The Media asked if I would give them a quote and picture of me with the Paramedic and Lifeguards. I decided to let them have a picture and quote because it would make this story complete. When I left the Rec Centre that day, I felt so good! Like weight had lifted off my shoulders knowing they all got recognition and another way of saying THANK YOU. Having this ceremony for the all the people that day made me know I could start healing………………………….

learning

After my first shock, I had a very hard time adjusting again. I felt I couldn’t do anything because if I did, I would get another shock. I was afraid to shower, go near the stove or even go up and down the stairs. I didn’t know what made my heart rate go up that day, because all I was doing was standing stirring. How could a heart just suddenly go crazy?? I had called the Pacemaker clinic to let them know I had received a shock. They said do a transmission from home (a transmission is a machine that you plug into the phone jack to read the data from your device) to see if it was in sinus rhythm or not. Did a transmission and I waited……….I didn’t wait long but when you are sitting at home it felt like hours when it was probably only ten minutes.

When they called me back, they told me that they believed I had received an unnecessary shock to the heart. Well!! talk about anxiety!!!! I thought it was a necessary shock and here it wasn’t!?! The Doctor said he believed that my heart did an irregular arrhythmia on the top of the heart and because where my ICD lead is (its on the bottom), it “felt” the arrhythmia and shocked me. His suggestion was to come in to adjust the settings to the device. He believed that the settings were too low and wanted me on a beta blocker to help regulate the heart rate. The clinic said I would come in three weeks, so that the beta blocker would be in my system for a few weeks before I went in for my settings change.

I tried my best to stay calm and do regular things again. Knowing that DC had to go back to work soon and that I would be by myself?? That was difficult. I didn’t have any troubles being by myself before but this time was different. I remember the first day he went, I was afraid to stay by myself.  All I could think of was “what happens if I get a shock”??  “what if I need CPR”??  “what if I received a shock and fall, knock my self out”??  So many things were going through my mind that day. When DC came home that evening, I broke down! Most people who know me, knows that I do not get emotional like that! I am a very strong person. I’m the one who is the shoulder for everyone. So this emotion was very new to me, I broke down three times that week.

During the few weeks before I went in to get my settings changed, I didn’t want to shower without anyone in the house, I didn’t go anywhere (plus I wasn’t allowed to drive) I didn’t even go downstairs. I was going through a lot of anxiety, DC could see I was struggling and suggested to see a therapist. A therapist?? I wasn’t sure if I wanted to see a therapist because everything to me was fine. Until one day I knew that I couldn’t be afraid of my heart, and most of all, my mind. DC set an appointment with the therapist the same day for my settings change. What a day!!!!

The therapist appointment was first, looking back at it now, I would have to say even thou I was nervous and didn’t know what to expect. It was the best thing for me. I know that when we met that day, I felt the weight was lifted off my shoulders. I knew I needed to see her again. I had seen her every two weeks for about four months and as I am typing about her, I didn’t realize how much I miss her. She helped me in so many ways. I didn’t see her as a therapist, I saw her as my friend. She taught me that I needed to learn to express my feelings more, if I felt mad – be mad, and if I felt sad and wanted to cry – let it out! Don’t hold it in! Learning to do this is hard for me. I have always kept my feelings aside, don’t get me wrong, I still said my opinions but I tried to never show my “sensitive” side. I didn’t like to cry or cry in front of anyone. ANYONE! even DC haha. I said before, I was the strong one! I helped get people through their tough times but now? it’s time for me. For me. I need to, so that I will be a better person, wife, mother, sister and friend.

The next appointment was at the Pacemaker Clinic to change my settings. When I say settings, I mean they set a range that would monitor the heart rate and the defibrillator would decide when it needed to shock the heart. So mine were set at monitor at heart rate 170, ATP (Anti-Tachycardia Pacing) at 176 and if the ATP didn’t help regulate the heart back to normal then I would receive a shock. They said that it didn’t give me much warning between the monitor and the first ATP, so they changed it. They changed it to monitor at heart rate 155, ATP at 200 and if it didn’t regulate then shock at 200. I know what you’re thinking, 200?? That’s pretty high! Yes but in my case my heart does get over 176 more than normal, so they figured if its going to go that high a lot then I would be shocked for no reason. This made me feel 100% better knowing that I had a better range of monitoring. I felt really good that day, knowing that there is light at the end of the tunnel.

I am learning a lot with this defibrillator and I decided that it will not take over my life. Life is short. I have learned that twice……….