Giving up doesn’t mean Quitting

Sujana Reddy and I sat down to talk about what sacrifices we have had to give up because of our chronic conditions. Ehlers-Danlos isn’t always a fair condition. Usually it comes with other chronic conditions due to the body breaking down.

Let’s Introduce Dr.Sujana Reddy

This bio is from https://www.awarenessforpotsies.org/bios#Sujana where she is the Vice President of Awareness for Potsies

Dr. Sujana Reddy is one of our medical researchers and is currently an Internal Medicine Resident Physician at East Alabama Health. Dr. Reddy is very passionate about helping those with POTS as she is also a POTS survivor and warrior from post-COVID syndrome, ME/CFS, and EDS. She also battles MCAS, post-herpetic neuralgia, and secondary immunodeficiency caused by H1N1 Flu and COVID-19 viruses. She fought for her health by investigating and researching until she found the root cause of her symptoms. Along the way, she has experienced medical trauma and medical gaslighting. Because of these life-changing challenges, Dr. Reddy is motivated to make sure no patient endures what she has gone through. Her vision is to practice medicine with an empathetic ear, a holistic approach, and with more focus on quality patient-centered care. Dr. Reddy hopes to open a private Internal Medicine practice that also helps those with chronic illnesses. This Alabama native graduated with her Doctor of Osteopathic Medicine degree, D.O., from the Alabama College of Osteopathic Medicine in Dothan AL in May 2021. Her hobbies include playing the piano, meditation/yoga, music/movie enthusiast, writing (a published research author), reading, and volunteering (a Crisis Counselor for Crisis Text Line, aids those who have low vision/blind through an app called Be My Eyes, campaign promoter for charity: water, and translator/transcriber for TedTalks).

Unexplainable

When I think about my Ehlers-Danlos diagnosis and the trials I’ve experienced since that moment, I wouldn’t have believed me if I had known. Growing up, I was never in the doctor’s office for anything other than a sinus infection a few times a year. Specialists and physical therapists were not on my radar. I thought I was invincible against the world and my body. Nothing was going to get in the way of my dreams or goals. However, this condition has stopped me in my tracks.

I’ve had to reframe how I look at my life and navigate my days. At times, pain arises out of nowhere, and it’s hard not to want to demand answers to why. Coping with the unexplainable and realizing it’s a life full of genuine unpredictability is hard to accept. There are days I desperately want to work on the documentary and can’t. As a perfectionist, I’ve had to acknowledge that getting the task done another day is okay. The only timeline is the one I am setting for myself, which means I can adjust.

Last night, I had the worst pain, and I had no idea why it came. It was pain radiating from my elbows to my hands. Desperate for answers, I sat awake in pain for a few hours before I finally motivated myself to get up and get ice and pain medication to help me drift back to sleep. If pain could be predictable, maybe this would be harder to cope with, but then canceling plans because of it makes you feel like you can’t be relied upon.

This is why finishing this documentary is so important to me. Awareness matters. A guide or road map would be helpful when it gets tough.