Tomorrow is St. Patty’s Day and it is somewhat of an emotional anniversary for me. It was St. Patrick’s Day 2006 when I had my first very major heart episode caused by the dysautonomia. Of course then we had no idea what was going on (and wouldn’t for quite some time) but I knew my life had changed forever… and I was right. Curt rushed me to the emergency room, when  I arrived my heart rate was 228 beats per minute and every minute felt like an eternity as the hospital staff buzzed around me and I floated in and out of reality. I felt like a ghost hovering above my body as if I was watching what was happening to me in third person.  The i.v. in my arm was pumped full of one drug after another as each failed to lower my heart rate to acceptable levels. I remember being very, very stoned. A nurse practitioner came in and was trying to ask me questions. She asked repeatedly if I had done any drugs or taken anything to cause my heart rate to be so high (I guess that is the first thing they suspect when a 26-year-old comes in with such severe tachycardia?). I vaguely remember Curt and I reassuring her the only drugs I had done that day was two puffs off an albuterol inhaler hours earlier. Being St. Patrick’s Day, the nurse was wearing a green headband with two antennas that had glitter covered green shamrocks on the top of each one. She also had obscene amounts of glittery gold and green eyeshadow caked around her eyes. As she leaned over my gurney and aggressively asked me for the tenth time if I had used cocaine recently , the antennas on the headband shook back and forth and a fine mist of green glitter rained down on my face. It all seemed to happen in slow motion… it was surreal. Shortly after she told Curt she was giving me another med to try to slow my heart… suddenly I was paralyzed. I literally could not move any part of my body and could not talk. I thought for absolute certain something horrid was happening then I heard her mention to Curt , “oh, by the way that med causes temporary paralysis, she will be able to talk again in about twenty minutes”.

Anyway… a few days later I was discharged from cardiac intensive care with a list of new meds that were still barely keeping my heart rate out of the tachycardia zone. As I sat at home I was trying hard to process how much my life had just changed. From that point forward nothing ever felt the same again. I was sick. It wasn’t getting better. I was pushed to specialist after specialist and each one had a differing opinion on what was causing it all. I remember thinking to myself this is temporary. I will get through this. It was March and I knew we were moving in July, I thought by then this will all be better and I will be back to normal. Then July came and I had hardly any improvement and was still searching for answers. We moved and I thought by my birthday next March things will be a lot better. March came and I was actually doing worse. It had been a whole year. Then my husband got a job in Columbus (we were living in Toledo at the time). It was somewhat of a dream job for him and I had always wanted to live in Columbus. I thought, things are going to be better, we are moving to our dream apartment in a swanky downtown building and I am going to go to grad school at OSU and things will be better by then. Well, you get the point…

Now, five years later are things any better? Yes and no. I still have dysautonomia, it still affects every aspect of my life and strongly influences my daily routines and how I live, where I go, what I can do. We do know what is wrong now, I am now very educated on this syndrome, I have almost grown used to the meds I have to take, stockings I have to wear, precautions I have to take, limitations I have. But am I still fighting the same stupid illness that caused my world to cave in that morning in the ER five years ago? Yes. But the best news is…. I am happy. I mean truly happy. I have learned to live life from a perspective few get to see and because of that I don’t take things in life for granted anymore. I love deeper, laugh harder, and attack each day with abandon because I am grateful to have that day. Sometimes it is hard not to wonder about the future. We don’t know the path this disease will take. Doctor’s tell me patients like me experience everything from spontaneous complete resolution of symptoms to progressive, some times life threatening, disorders like multiple system atrophy. I do not know what the future holds but I love my life and the people in it and I know they will be there with me regardless how things turn out. There is some scripture that sums up my attitude and how I chose to live my life.

Matthew 6:25-34

25 “So I tell you, don’t worry about the food or drink you need to live, or about the clothes you need for your body. Life is more than food, and the body is more than clothes. 26 Look at the birds in the air. They don’t plant or harvest or store food in barns, but your heavenly Father feeds them. And you know that you are worth much more than the birds. 27 You cannot add any time to your life by worrying about it. 28 “And why do you worry about clothes? Look at how the lilies in the field grow. They don’t work or make clothes for themselves. 29 But I tell you that even Solomon with his riches was not dressed as beautifully as one of these flowers. 30 God clothes the grass in the field, which is alive today but tomorrow is thrown into the fire. So you can be even more sure that God will clothe you. Don’t have so little faith! 31 Don’t worry and say, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear?’ 32 The people who don’t know God keep trying to get these things, and your Father in heaven knows you need them. 33 The thing you should want most is God’s kingdom and doing what God wants. Then all these other things you need will be given to you. 34 So don’t worry about tomorrow, because tomorrow will have its own worries. Each day has enough trouble of its own.”

Having joy in your life doesn’t have to be dependent on your circumstances. Things don’t have to be going perfectly to be able to walk in peace. God has a greater purpose for my suffering. He has ordered it, allowed it to be in my life, and I know it is not in vain. I certainly don’t have all the answers but I am thankful for peace that surpasses all my understanding. I am surrounded by beauty, love, and light and although life hasn’t turned out to be anything like I thought it would, I am okay with that. It is not a lost cause.



6 thoughts on “Attitude

  1. Hello! You do not know me, I stumbled on your blog while searching online. My name is Kevin, I’m 22, and I too have dysautonomia and also Ehlers-Danlos Syndrome. I’ve tried looking for an email on here or something, but I could not find one, so I figured I would make a comment. I’ve been trying for the past four years to get everything figured out and I’m only part way there. Very few people understand dysautonomia and thus far this blog is the only other person I ‘know of’ that has it as well. If you’ve been able to find a doctor that understands dysautonomia, as in truly understands it, I would enjoy talking as none of my doctors around here have much of a clue.

    God bless and hopefully your days are well!

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