October is Dysautomonia Awareness Month. I would say symptoms started for me at 8 or 9yrs old when getting up and doing normal activities started to seem like running a marathon. School was hard for me, not the academic part but the being there and doing normal activities part. P.E was my WORST nightmare and I would be petrified for school because I knew I had P.E the next day that involved running a mile, doing the pacer test or just doing push ups and sit ups. I would cry and beg my mom to write me a note saying I had sprained my ankle, or hurt my leg, knee.. anything I could think of. I’m sure my teachers thought I was a huge hypochondriac or just extremely lazy. 😂😂 thank god my mom listened to me.. if she hadn’t of, I would have been forced to do things that I could feel were making me sick, weak and exhausted. I had gone to the nurses office so many times, I was no longer allowed. Yes, that can happen. I really did not know what was happening to me, I was a young girl trying to enjoy my childhood yet my body was not cooperating, and only a select few believed me. My mom took me to the hospital for severe stomach pains (the first symptom that really stood out), after many tests, they said I had Acid Reflux. I changed my diet and that helped for a few months before it came back. The other symptoms were still there, but were getting worse. I started to think that what I was feeling was normal, that everyone experienced what I did. Those other kids must really be tough if they can withstand the pain and continue running around.. Yeah, no. I continued to feel sick, had family members, friends, teachers, doctors and even strangers put their two cents in.. “you aren’t sick if you don’t have cancer, she must be trying to skip school, she needs counseling, is she being bullied? Why doesn’t she want to go to school? Does she drink coffee? It must be all in your head!” Hearing things like this from the peanut gallery was one thing, but hearing it from people you love and care about was a lot. I started to question myself, was I really sick? WAS I trying to get out of school? Is there something wrong with me mentally? Am I making this up? After years of suffering, countless doctors office visits, emergency room visits, miserable testing, being told nothing is wrong, you’re 100% healthy.. we tried children’s hospital. I went to a motility specialist (my ANGEL!) who looked at me in the eyes as tears were streaming down my face and he said believed me. I will never forget that.. I started bawling and he hugged me and said he would find the cause of my pain. This appointment was the day before my 13th birthday, I said it was the best birthday gift I could’ve asked for. He did not lie to me, he found the problem and made me feel validated. It certainly was not easy dealing with the tests he ordered, I was miserable.. but i got my answer. When my parents and I went back to his office to get the results, he said he thought I had POTS. As a 13 year old girl, I looked at my parents and said I don’t have POT!! Dr. Darbari started laughing and said no.. POTS, it stands for postural orthostatic tachycardia syndrome. (😵😳) I was so relieved, so thankful and so ready to have something to treat the symptoms I was having. I had another thing coming.. instead I was told there was no cure. I was happy to finally have some answers, a name for what was causing me so much pain and a REASON I was feeling this way. At the same time, I was upset that there was nothing anyone could do for me. It was a huge let down, I was disappointed and depressed. I had just gone through years of testing, needles and basically being a guinea pig.. for what? My childhood was taken from me by an illness. (Just the truth) I spent one year in middle school before it was too much for me and my body. I began home bound tutoring, where a teacher came to my house every day after school. After 2 years of that, I started homeschooling. I never stepped foot in my high school as a student, never went to homecoming, prom, never went to a HS football game. I unfortunately did not have the “high school experience”, which sometimes bothers me but most of the time I’m ok with. I matured much earlier than my peers, and I’ve been through things that some adults have never been through. I had endoscopies and colonoscopies before my parents did. I have been through hell and back but this journey has only made me stronger, more empathetic, understanding, given me an entire community of people just like me, and opened my eyes to many different things. I would have never gotten through this if it wasn’t for the constant love and support from my tribe. My mom is my biggest advocate, she has never doubted me and how I’ve felt, she has taken care of me through thick and thin. She shows me unconditional love, support and guidance. Every day she is researching and reading the newest information about Dysautonomia, making sure I take all of my medicine, vitamins and drinking plenty of water. My dad has supported me, loved me and been there for me in times of struggle and during the good times. He can make me laugh and smile when it’s the last thing I want to do. My sister has been an incredible friend, a shoulder to cry on and an ear to listen. She’s given me the greatest love I’ve ever known.. my nephews. I truly don’t know if I would have been able to get through all of this if it wasn’t for those two boys who bring the biggest smile on my face and can make a horrible day, the best day. Watching them grow into the sweet, smart, caring, funny kids they are has been the highlight of my life. I love them so much, they give me the strength to continue to fight through the pain. My grandparents have always listened, been there for me and loved me through it all. They have cooked for me, tucked me in bed at noon, picked me up from school, and spoiled me. There are so many other people that I’m beyond thankful for, but that list is too long. If you’ve read this, read anything about POTS/Dysautonomia, or just made me smile.. I’m so grateful. This is not easy but it makes it a little less scary when you have an incredible support system behind you. I encourage you all to please educate yourself about Dysautonomia & POTS. I know it is intimidating, and I know it may not seem important if it isn’t personally affecting you.. but one day it very well could. POTS impacts between 1-3 MILLION people in the United States alone. There are millions of other people across the world affected by this condition. POTS is not rare, medical professionals knowing about POTS/Dysautonomia is rare. The disability seen in POTS is compared to COPD & congestive heart failure. If you would like to learn more, I encourage you to visit Dysautonomia International on Facebook or their website, https://www.dysautonomiainternational.org . I cannot express how much it means to me and other POTSies when people get educated. I would be incredibly grateful. If you’ve read this far, THANK YOU.
Jordan
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