‘I blankly looked at the doctor. ‘What does this mean?’ He replied, ‘Hope you don’t go deaf.’ They gave me a discharge note. ‘I could drop dead at any time.’

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“Have you ever come face to face with that person in the mirror and not recognize who is staring back? I had that picture perfect life most people wanted. I was the high school sweetheart, had a weekly BBQ with friends, a beautiful home, a secure job and what others might have seen from the outside as the perfect life. I appeared happy, I smiled often, I laughed at everything, yet deep inside I was a disaster. I cried every night and slept alone in fear. I worried about my finances, I worried about my escape and I was losing myself each and everyday feeling lost in the world I helped create.

Ten years ago my health started to fail miserably just as my marriage was coming to an end. I started to suffer from extreme vertigo. Every step I took felt as though my legs were marshmallows. Along with the vertigo came the constant nausea. After a doctor’s visit and a diagnosis of anxiety I was prescribed Valium and Zofran. I took pill after pill but my symptoms became worse, I found myself alone sobbing on the bathroom floor pleading with god for answers. I remember sitting in the doctor’s office when I was diagnosed with Meniers disease, I blankly looked at the doctors asking him what exactly does this mean? He replied with a short answer of ‘it’s an inner ear disease with no cure, you will need to cut out salt and caffeine, continue the Valium and Zofran and hope you don’t go deaf.’ I was a bit distraught as I headed home to research this disease I was now harboring in my body.

Courtesy of Rachel Werner

With my new diagnosis I left my old life behind and decided at that moment I was going to focus on the new me. I continued with the treatments for my Meniers disease and focused on trying to eat healthier. I concentrated on my career and fell head over heels for the most amazing man I had ever met, the love of my life. Life was better than good and despite my health battles I was happy! My vertigo continued and I was able to live with it until December. My dizziness landed me in bed for 28 days. I laid in bed sobbing, I was doing so well and now here I was unable to walk. I was convinced I did not have Meniers disease and I just needed someone to listen to my doubts. I went to a local ENT who ran a few tests and said ‘Rachel I don’t think this has anything to do with your ears, you need to see a neurologist!’ I smiled and thought finally someone is listening and I was referred to a good doctor.  

I went in for another MRI and received a call from the neurologist that I needed to come in. Most people might be frightened when receiving a call like this but I was relieved! Yes, you heard right, relieved that maybe I might finally get some answers. Sadly the answer was ‘you have a Chiari malformation (a structural defect in the brain) but I agree with your initial diagnosis of Meniers. We don’t think the Chiari is causing your vertigo but you can go see a specialist if you prefer’. Off to the specialist I went only to be told the exact same thing. I sat in the parking garage and cried. Back to square one.

Courtesy of Rachel Werner

I started receiving weekly nerve blocks for the headaches and dizziness and was prescribed so many different medications I couldn’t keep track of it all. I was diagnosed with R/A, Lupus, EDS, Meniers, Chiari, migraines and anxiety (well duh). Sometimes I had days, weeks, and months of complete hopelessness. I was giving up.

Courtesy of Rachel Werner

Would you ever think a blood clot could save your life? I started having severe leg pain, I honestly thought I pulled a leg muscle trying to tackle the Beast workout. I jammed out at a concert trying to ignore the pain it honestly felt like I tore my calf muscle! After days of fighting it and my sisters constant comments of  ‘go see a doctor’ I broke down and went to the ER. I really didn’t think I heard them right when they said I had a blood clot, I had no contributing factors! They gave me a blood thinner and a discharge note to follow up with a hematologist and on the note it said ‘I could drop dead at any time’. I sat in the car and sobbed again. I never would wish the pain of blood clots on anyone or the fear of dying that haunts you through recovery. I had a lot of time to pray and I had an intense need to live a normal life. I wanted to be healthy. I wanted to feel good again. I knew this would be a crazy hard recovery but I was determined to change!

The blood thinners they put me on reduced my migraines drastically and I started to feel normal again, my constant dizziness subsided to more of a gentle sway. With determination to feel good I started to seek a doctor who might listen to me instead of labeling me as an acronym. It took me a year but I finally found Dr Bilstrom. The first time I met him and saw the look of concern on his face I knew right then this was my guy. My first visit lasted four hours, he asked me questions dating back to my childhood. He told me he could help me and was determined to turn my positive autoimmune test to a negative. I left his office that day with so much hope and excitement, maybe, just maybe he would be the one with answers. It was determined by several blood tests I had been suffering from severe food allergies causing severe inflammation throughout my body. I was put on a strict diet eliminating all the foods I was allergic to and within a month my life started to change, I was able to walk six miles again! A year prior I couldn’t walk one. I was amazed these foods had such an impact on my body, I was slowly killing myself by eating foods I thought were healthy and ok to eat.

Courtesy of Rachel Werner

Then the weight started to just fly off of me, 50 lbs to be exact (later I would learn this was just a lot of inflammation) and my dizziness only occurred occasionally when a storm came in. The best part was my anxiety was GONE! I had lived my entire life with severe anxiety, and for the first time in my life it was completely gone. I started to feel like the person I lost 10 years ago to sickness. After 6 months we repeated all my labs and I was so nervous to see the results. I was feeling so much better but I had been so disappointed so many times before I wasn’t expecting much of a change. My phone dinged with a new email from the lab, I nervously signed in and opened the attachment. ‘No way!’ I shouted out loud, was I reading this right? NEGATIVE for autoimmune? Test after test, everything had improved. I sat on my couch and cried and for the first time in a long time. I cried because I was so happy.

Now I look in the same mirror and my reflection smiles back. I survived a painful divorce, I survived a list of diagnoses, I survived a blood clot, I fell in love with the man of my dreams, and I am no longer in pain. I want to explore the world and live life to the fullest. My heart is full of gratitude and each day I tell myself one thing, ‘don’t give up on yourself because you are a survivor.”

Courtesy of Rachel Werner
Courtesy of Rachel Werner

This story was submitted to Love What Matters by Rachel Werner. Follow her journey on Instagram hereSubmit your own story here, and subscribe to our best stories in our free newsletter here.

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