‘When I brought my daughter home from the hospital after her heart surgery, I was so focused on her recovery – not knowing there was a storm within my OWN body ready to surface.’

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“My name is Kimberly Merke I am a 41-year-old personal trainer and fitness competitor who happens to suffer from a rare medical condition call POTS syndrome. This monster has tried to take over my life and has left me to fight an ongoing battle within my own body. I was only diagnosed 6 years ago by a cardiologist after my 11-year-old daughter was diagnosed with a heart condition and would need heart surgery.

I have never felt so helpless as the day I stood and watched the paramedics stop and restart my little girl’s heart 3 times right in front of me. I was told they could only use this medicine 3 times before having to stop – I felt like I was watching a horror movie. I could not feel anything. I had become numb and just watched as people were rushing around and telling me to not look. My heart broke that day.

Kimberly Merke

After the paramedics were able to stabilize my sweet girl they transported her to Vancouver Children’s hospital to continue working on her. I remember doctors trying to talk to me, but I could not respond. I just sat there feeling frozen. At one point a doctor asked me if I was ok. I responded, ‘No, I don’t feel well,’ so after checking my pulse and finding that I was showing symptoms of a stroke, I was sent to a cardiologist to find out what was going on inside my own body. My life had turned into an ongoing nightmare I just couldn’t wake up from.

Kimberly Merke

Once I brought my daughter home from the hospital after her heart surgery, I was so focused on her recovery – not knowing there was a storm within my own body ready to surface. I still remember the day the cardiologist called me into his office to go over my test results. I had never been so nervous about my own health. The doctor asked me to take a seat and started with, ‘We have good news, then some complicated news.’ I started with the good. I sat there waiting to hear the worst but I was relieved when I heard the words, ‘You have a healthy heart.’ I took a breath and released with ease. The next words to come changed my life forever. The cardiologist looked at me and said, ‘You were born with a rare condition.’ He wasn’t sure what had caused it but I would need to start medication ASAP. I broke down and started to have a panic attack. I was told if I don’t medicate, my heart would just give out one day. I felt like I had just been sentenced to the death penalty. My mind raced and I asked him to run more tests but he insisted this was the verdict. He wrote me a prescription and sent me on my way.

I have never been keen on taking any type of meds. My body had always been sensitive and responded poorly. I left the doctor office and went home and informed my husband what was going on. He was in denial. ‘There is no way you are sick. You are the picture of health. They must be wrong.’ I felt like a prisoner in my own body. I started taking the pills given to me by the doctor but I had such a bad reaction I ended up in the hospital with a heart rate that was of an individual in a coma. I could feel my heart slowing. I was terrified. I decide to take myself of these meds slowly so I wouldn’t go in to cardiac arrest. Once I was back home resting I decided to get sent to another cardiologist for a second opinion. Almost a year later I sat in the office of an amazing doctor who would do a new set of tests and investigation of my symptoms. I had always had strange things going on with my body for as long as I could remember.

Kimberly Merke

As a child, I would be fatigued and suffered from brain fog and concentration issues. My teachers all told my mother I was hyper active and might have learning disabilities. My mother would have me in the doctor office constantly for different symptoms such as tummy issues, dizziness, headaches, shortness of breath, the list goes on. The doctors never ran tests, they would respond with, ‘She just needs vitamins and discipline. I was a fussy preschooler and extremely moody child from age 4 up. My mom said she knew something was wrong, but no one could give her any answers. Years went by and I felt worse. By the time I was 20 I was dealing with what I thought was anxiety attacks 2 or more times a week. I was prescribed anti-anxiety medication but had a poor response and ended up with worse symptoms, such as numbing in my face and down my arms. My resting heart rate had always been around 120 bpm or higher for years. I decided no more pills. I started practicing yoga and reading books to help myself.

Kimberly Merke

Years went by and my days became more difficult. I had severe insomnia, daily dizzy spells, nausea, tremors as well as chronic chest pain and shortness of breath. Some days I have such severe nerve pain all over my body that I just curl up in a ball and cry unable to move. I went through 36 years of feeling like I was dying, but doctors could not give me any answers. The day I walked in to my new cardiologist’s office, I knew this woman would help me finally get some answers. I felt safe and comfortable in her presence. This kind woman sat me down and explained to me in great detail that I have POTS syndrome. I was confused and asked, ‘What is it?’ She went on to explain it a neurological condition that caused many issues in my body from being able to regulate blood pressure and heart rate, dizziness and many other unpleasant symptoms. All my symptoms were from this syndrome. I was literally the poster child for POTS. I told the doctor I would not medicate and she respected my wishes. She educated me on how to monitor and manage symptoms as best as I can without taking meds. I explained to this woman I was a personal trainer and my job and passion is fitness.

Rommel Ramirez

A year ago I was told by the first cardiologist I would have to stop what I loved and this caused me to withdraw from the world and go in to a dark place. I no longer knew who I was. Everything I loved and believed in was taken away from me by the last doctor. I was sitting in this office wanting to hear I could do what I needed to do to feel like me again. With a long detailed discussion, I was given permission to slowly re-introduce exercise and I would start to train clients again. I asked my doctor, ‘How can I help others when I am broken?’ She looked at me and replied, ‘You are far from broken. You just need time to learn how to modify things in your life.’ I was always a positive individual who looked for the upside in life – now is the time I would have to work the hardest I ever had to rebuild my life. I had dwindled away to 91 pounds and was so ill I did not feel like myself. It was time to get my life back.

Kimberly Merke

Each day I could do a little more and felt a little better about my diagnosis. I now had the support and correct information to help myself. Things will never be the same but I would have the tools to get started on taking  back my life. I would need to have more patience than I have ever had to have. Getting frustrated and angry would achieve nothing but draining me of the precious energy I needed to take care of my family and live my life. Things started to improve for me and I then decided it was time to go talk to my cardiologist and discuss the possibility of me competing in a bikini fitness competition. Ever since I was 14 I wanted to be an athlete. I was in ballet for many years and did English horseback riding as well as other types of dancing. I loved working out and eating healthy. Fitness wasn’t what I did, it was who I was.

The day I was told I had POTS and that I had an exercise intolerance as part of the symptoms, it made me want to chase my dream even harder. I woke up one day and decided I would not be a prisoner in my own body. I would be a warrior and fight for what I loved. I walked in to the doctor office and explained to my cardiologist if I am going to feel unwell no matter what, I might as well live out my dreams. She listened and responded with, ‘You are determined to do a fitness show and you’re going to no matter what.’ I said, ‘So let’s do this, right?’ I was so excited! I told her I would listen to her guidelines and she agreed. She had never known anyone with POTS to compete, and said it wasn’t going to be easy and there would be risks. This woman having faith in my dream and being willing to support me in this was like winning the lottery.

Kimberly Merke

I was cleared to start I was so excited and scared I didn’t know what to feel exactly. I had mixed emotions about what I was about to embark on. I found a coach willing to work with me. I was an extremely high liability client so I was so happy when I found the man who would help me go after my goal. I also had to work with a naturopathic doctor to help monitor my symptoms to ensure my safety. Doing show prep is hard on anyone – healthy or not – so I had to take every precaution to protect myself. It was like a dream to start working out with my trainer. I knew it would be difficult and even risky but this was what I needed to do.

It was roughly a month in when things took a turn. I had suffered a brain viral and ended up in the hospital and bed ridden for more than a week. I was unable to even open my eyes from the vertigo and vomiting. The doctors could do nothing but hydrate me with an IV. I was unable to eat or drink or even sit up. My family watched me deteriorate. My husband honestly questioned if I would make it through this mystery illness. Two weekends passed and I started to feel a little better. I still could not move much and was extremely sensitive to light and sound, but I felt like I was coming back from grave. I was hopeful time would heal me so I could get back on track with my show prep. Shortly after the brain viral, I had suffered a severe seizure. This left me feeling very unwell and not quite the same. I started having visual issues and headaches regularly. I was concerned with what was going on inside my body and why? There were too many question marks.

Kimberly Merke

I had to take over a month off prep to recover but once I started back up, things were different. I felt off. I was back to feeling fearful and doubting my body. Why was all this craziness happening now? My mind was in over drive every day. I was trying to figure out what was causing this storm to rip through my body. Step by step I got back to prep and slowly started feel confident and capable. I had picked out my suit to wear on stage and was getting ready for my big day. I had been having vision issues that weren’t calming down so I went for an eye exam and was told by the doctor I had suffered a torn retina and would need eye surgery right way to prevent blindness. I honestly thought the universe was saying, ‘No Kim, you will not compete!’ My husband was terrified with all that had happened in such a short time. My family asked me to stop training for the show. I had a total melt down at this point. Do I stop prep and put my family as ease? But then I will suffer inside giving up on my dream. In my mind I kept saying life is for living, not simply existing. I tried to comfort my family and explain where I was coming from and how I needed to do this for me.

Rommel Ramirez

The day finally came and I did what I was told would not be possible. I stood on the stage after one year of living hell. I stood there tall and proud that I made it through, and my family and coach cheered me on. I was told I had performed a miracle and I replied, ‘I had to stop waiting for a miracle and become the miracle.’ I was told by all my doctors they would support me through one show, then I would need to stop. That was three years ago.

Kimberly Merke

I took a year off then I decided to take things further. I wanted to be the first athlete with an exercise intolerance to get their pro card. I know it sounds crazy, but I was told I would never compete and here I am today still competing and bringing home trophies. Nothing great comes from staying in a comfort zone. I now belong to a fitness team and train under a new coach who has helped bring myself to where I am today.  It takes serious dedication to commit to a client like me with all my health issues, and I am so grateful for this woman.

Kimberly Merke

I feel so proud of my accomplishments and I can’t wait to see what life has in store for me. I hope to inspire others with POTS syndrome and other chronic illnesses to not give up and to keep fighting the fight – to live, not simply exist. There is no cure for POTS syndrome and I still refuse to medicate. I will always face daily challenges but my mind is the muscle I work the hardest so I can live a life I love. Anyone who suffers with chronic illness knows how difficult it is to stay positive, but I am here to tell you with the right knowledge and support, you are capable of so much more than you realize. Life is full of lessons and obstacles, so why not focus on what you do have. You are alive, and that is a gift.”

Rommel Ramirez

This story was submitted to Love What Matters by Kimberly Merke, 41, of Richmond, British Columbia. Do you have a similar story dealing with chronic illness? We’d like to hear your journey. Submit your story here, and subscribe to our best stories in our free newsletter here.

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