Destiny, age 22, Nevada
On March 24, 2019, I was 22 and just gave birth to my son. I was an active person, and I loved to walk.The previous day I had walked miles from grocery stores to restaurants, trying to get the stuff I needed and prepare for his birth. I didn't know that after I had my son that all would change.
A week later, I was upstairs feeding the baby and felt sick. I called for my mom before I collapsed. I was in the hospital for six and a half weeks, and was shuttled between hospitals and rehabilitation centers during that time. The doctor said that it was postpartum, even though the entire time my son was at home without me. It was breaking me not to be there with him.
Fast forward a couple months and I still didn't have a proper diagnosis. This entire time I had to lay completely flat. I could not sit up, stand, or walk without passing out. I was a 21 year old mother of a brand new baby that couldn't take care of herself or the baby without help. It wasn't until around August or September that I did a tilt table test that have confirmed I have POTS. For some reason, though, the hospitals wouldn't take this diagnosis seriously even though it came from an electrophysiologist. Throughout those months I tried different beta blockers and other medicines that are usually prescribed for those with POTS, but none worked for me. In Nevada all the doctors were stumped and couldn't help me. I've continued to be in and out of hospitals.
We were fighting for months to see a specialist out of state. I was approved to visit Mayo Clinic and other specialty facilities, but then something would pop up and I would then get denied. I was finally okayed for Stanford in California. They confirmed the POTS diagnosis, took me off seizure medications, and diagnosed Functional Neurological Disorder (saying it happens along with my POTS episodes).
In 6 months I will see my neurologist for follow up again, I am trying to see an electrophysiologist to see if I still need hydrocortisone or if everything is functioning alright now. I do have a pituitary adenoma that they found a few months after the collapse. I am trying to set up physical therapy in bed because I kept passing out even laying down just moving my legs. My endocrinologist is going to get in contact with his mentor from Boston now that Standford confirmed POTS and get an opinion on what to do, since we tried the normal recommended meds but they didn't work for me. I would like to be able to sit upright, and eventually stand and walk again.
My son will be 2 in March, which means I have been completely flat and bed bound for almost 2 years. I am not on disability because they said I have to know what kind of POTS I have, but no one knows. I couldn't get assistance from WIC because they don't allow stretchers and said I had to come there sitting in a wheel chair not passed out or sign my parental right over to my mom. I am not doing that cause I will get better and I'm not giving up on being a mom to my son. My family has been a big help in caring for both my son and me.
This has been hard, especially seeing others take care of my baby the way I want to. Missing much of his first years has been awful, but I believe everything happens for a reason. God blessed me enough for my baby and there is reason he allowed me to go down this path. I want to bring more awareness to this disorder. I also pray that one day when I am better and can at least sit up that I can go to conventions and meet other POTSies especially ones who have it as bad as I do. I want to feel my story and give hope to others and show them we can over come and have faith. I keep praying I get to do that cause I'm not giving up.