October is Dysautonomia Awareness Month, and to show support we're highlighting patient stories on our blog. Rose is an 18-year old with a specific form of dysautonomia called POTS (Postural Orthostatic Tachycardia Syndrome) and she wrote the following about her condition:
Hello! My name is Rose Kelble and I have Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. POTS is a comorbidity of my main diagnosis Ehlers Danlos Syndrome. All of my conditions have left me severely disabled. I am wheelchair bound 24/7, I am fed through a feeding tube, and I get my hydration through a long term IV called a port. Although POTS has become one of my live in life ruiners, as I like to call them, I am so much more than POTS.
I am 18 years old, I have two siblings (a brother and a sister), a mother, and I got lucky to have two dads (step and biological). I have acquired a lot of hobbies since becoming disabled. I enjoy painting, drawing, reading (I have always been a bookworm), writing, knitting, video editing, crafts, and more! Some of the hobbies I am longing to get back into (hopefully when i am better!) include, skiing, hiking, biking, swimming, and exercising!
Even with these hobbies to keep me distracted, without inspiration it’s impossible to get better. My biggest inspiration is all of the kids like me I’ve had to pleasure of meeting through social media. I get to watch them heal and start opening their lives back up to all of the things they had to shut out. Seeing them transform gives me more hope than anything else that I will also get there. It puts it in perspective for me, all of the things I am going through will not be this bad forever, and the fight is worth it. However, another impossibility is dealing with all of the funk alone. My family and my girlfriend are what gets me through it. My girlfriend has become my live in caretaker. Although she works she is there for me every second she possibly can be. She reminds on me on the daily of my strength, determination, and will. Without her I wouldn’t be where I am today, literally. She also told me about EDS and POTS and essentially saved my life. I am forever grateful to have her.
Life with chronic illness is full of ups and downs. The most down down I have experienced with my POTS was when I had very severely low blood volume. I passed out everytime I stood, I blacked out everytime I sat, I was constantly at an elevated heart, it was one of the worst times of my life. I was hospitalized in March for a different reason but the doctors and nurses had to keep me pumped full of IV fluids for me to function slightly. My biggest up is related to my biggest down. I was referred to a cardiologist in Virginia who is a POTS specialist. Me and my mom made the drive five days in a row to have very thorough autonomic testing done. Although we complained the whole time, it turned out to be the most worth it thing I have ever done.
When the testing was complete, my doctor knew immediate action needed to be taken. He wrote me an order for my port and two liters of IV saline everyday. I immediately felt better. I haven’t passed out in months and overall my POTS symptoms are milder. Some things cannot be fixed with fluids but they fixed my most debilitating symptoms. I will always have so much gratitude and love for the doctor that saved me. The same as I have love for all of the dysautonomia suffers across the world. I hope this post helped you learn some things about me and some things about POTS!
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