My dance studio has a tradition where each member of the graduating class choreographs a routine and teaches it to their classmates. This past Tuesday, it was my turn. I was so nervous. I was worried I would feel sick or pass out. I only worked on this routine for two days and I was nervous I would forget it while teaching. Between all of the challenges I have had to face, dance has been the place I can come to and just forget about all the different medical issues I’m having. I know I don’t have great technique or straight lines, but the fact I was able to even stand up there and do that meant so much to me. Three years ago, I couldn’t even walk. I was completely bed and wheelchair-bound. There have been many days I couldn’t even walk into the studio, but I pushed and pushed myself to get to this point. I knew going into this, I wanted to do something for all the people who are too ill to dance like I once was. I dance for you. At my sickest point, I was desperate for my body to work. It was shutting itself down and I couldn’t help but wonder, why doesn’t my body love me? This dance is the journey of my body and I. I fought for so long for my body to give me love. My body has put me under extreme medical circumstances and I was so angry with it. Why did I have to faint now? Why did I have to have a convulsion that day? Why can’t my body just function? But then I realized… my body is suffering too. It’s not just my state of mind. My body helps me dance. It picks me back up. It tells me when I feel sick and when I need to slow down. It’s helped me get through 9 months without fainting. We’re in this together. So, this dance is a love song to my body, because, after years of fighting, we can now give each other love.
9 months after coming to POTS Emma is dancing
INTERVIEWER: Thank you for talking with us today, Shelly and Allison. Could you guys please share with us what your journey with POTS has been like?
Shelly: My worst symptoms were the fatigue and tiredness and it just kept worsening. I think the worst for me above and beyond my symptoms was just actually trying to find somebody who could actually help me. There was a lot of time, energy and money that I felt I didn’t have trying to find somebody who was knowledgeable about what was going on with me, that was the worst part.
INTERVIEWER: How long have you been sick? Shelly: I am 50 years old and I have had symptoms wax and wane throughout my life, but it worsened in 2010. It was just like my health started really going downhill to the point where I ended up being bedridden in 2012.
INTERVIEWER: Allison, what about you? Do you want to tell us a little bit about your symptoms, what you have been through, how long you have been sick?
Allison: I have been sick for a good three years now. It has affected my life drastically. I am 18 years old now, and I am so sick and fatigued and in pain. It is cruel. It has prevented me from making friends and having a normal typical teenager life and going to school.
INTERVIEWER: Were we able to identify any underlying problems that others have missed before?
Shelly: Absolutely. Just as an example of what’s familiar is digestion; prior to Dr. Driscoll’s opinion, it was just I have slow digestion, that was it, and nobody ever dug deeply and I really think that was a big reason why nobody understood. Therefore, my symptoms kept worsening throughout the time. So, she absolutely was able to get to cause with everything she looked at, since she is really good at symptom discovery and just dug. It is personal here, it is not just a blanket treatment. The doctors truly go in and look at everything individually.
INTERVIEWER: Do you feel like we are using real science here?
Shelly: Oh, yes. I appreciated the fact that she would address things, this is based on science, this was based on objective findings. So, it was good to remember that, especially somebody like myself who has been doing my own research. It’s very ambiguous whether to say if it was somebody’s opinion or if it was really from a study. She is very deliberate, she took the time to do that and she would actually mention that that this was based on such, such and such. Oh, yes, that was very clear to me.
INTERVIEWER: Do you both feel like you have a better grasp on how to deal with your condition now?
Shelly: Absolutely 100% positively, yes.
INTERVIEWER: Is there anything else you’d like to add today?
Shelly: I just wished I would’ve found POTS Care six years ago, to save the time and the energy and the money. It is just definitely worth the price moreover. I wish I had given her all the money I spent on other things. I feel like we are both going to start a new life now.
INTERVIEWER: Thank you for talking with us today, Shelly and Allison!