My Journey with Dysautonomia
About The Author: Ash is a queer, black, disabled, chronically ill herbalist, activist, and founder of Sovereign Roots Apothecary. Sovereign Roots is a collective for black people to come to heal, make medicine, and connect with the earth and themselves. They are dedicated to the liberation of black folks and centering black joy and pleasure.
How It All Started
My journey with dysautonomia, an umbrella term in which POTS lives under began ten months ago after I had returned from a music festival concert with my partner. It started with what seemed like a simple urinary tract infection. Something I have dealt with my entire life since childhood. So, I made an appointment with my OBGYN and went in to get it checked out. After a thorough examination and testing, they said I had cervicitis, which is bleeding in the cervix. They said mine was minor and just looked irritated. They gave me an antibiotic and sent me home. Weeks went by, and I was still feeling unwell, I noticed I had significant fatigue and severe painful peeing and cramping. I was positive that I had a UTI. I went back in again, and they found nothing. It was on my 6th OBGYN appointment that they finally just said they couldn't find anything, but if I wanted to take an antibiotic that was strong and maybe would kill something that was bothering me, I could. I was shocked!
Advocating For Myself
I was insistent, and at this point, I was unable to sleep without having to pee in pain five times a night, not sleeping at all. I was feeling lucid and exhausted. My mental health was heavy and depressed. I knew something was not right and pushed to be seen by a Urologist and a new Gynecologist. Thank goodness I did. They both discovered two 5cm fibroids that were pushing on my bladder, causing me a lot of pain and mimicking UTI symptoms. I was scheduled for surgery, and they were removed, and I recovered wonderfully. After that, I thought I was in the clear but the symptoms I had been experiencing on top of the fibroid symptoms were still there and worse. I was dizzy when standing and experiencing tachycardia, high heart rate, palpitations, nausea fatigue, tremors, sweating brain fog, and like I was going to pass out if I stood too long. I also had extreme shortness of breath and high heart rate when I sat too long, which was discovered on my solo trip to Portland, where I had to quickly pull the car over and put my legs up before coaching myself to drive the ER which was over 2 hours away.
I started to have more regular episodes like these, which felt like a stroke or heart attack and made me very scared and worried something serious was going on. I went to so many doctors who told me nothing was wrong and that I had anxiety and just needed to relax. I spent every day in bed, and it took everything in me to stand up and get ready for the day. I knew this wasn't normal. Did I have anxiety? Sure! Was it caused from feeling like I was going to pass out in public all the time or drop dead? YES! But it was not the cause of my symptoms.
My Diagnosis Journey
So, I finally found a medical team that cared enough to get curious about what they didn't know. I had someone tell me about POTS (Postural Orthostatic Tachycardia Syndrome), and when I read the description, I knew that this is what was and has been going on for most of my life. I remember getting dizzy spells as a kid and just passing out or throwing up for now reason other than I always had a "sensitive" stomach. Things I just chalked up to be a regular thing everyone deals with. I luckily had a fantastic cardiologist who immediately knew it was POTS as he tested me. I was so grateful not to be told that "it's all in my head" anymore that I collapsed in tears. I know my body better than anyone else and that my wisdom should be heard and cared for.
After my diagnosis in February 2020, my doctor and I decided I needed specialty care as he had no experience dealing with POTS and its intricate symptoms and effects on the autonomic nervous system. So, I was referred to a fantastic specialist in Portland, OR. Then Covid19 hit, and the referral fell through, no one was expecting any new patients in the state of Oregon. I was devastated. I had no options for treatment. The typical POTS at-home treatments: compression socks, salt, electrolytes, small meals, and working out were not helping me. I was getting worse. I was also starting to understand the urinary issues and GI issues. Basically all the symptoms were connected to dysautonomia, a dysfunction that sometimes caused complete collapse to the autonomic nervous system. It is commonly connected to Ehlers-Danlos Syndrome (which I am in the process of being tested for). The EDS combined with POTS, would explain the constant neck, back and joint pain I have had ever since I can remember and my overly bendy body that I never stretch. We plan to treat one thing at a time since dealing with it all can be too much at once.
Getting My PICC Line
While finding a doctor who specializes in POTS to help treat me, I was pre-posed to go to the hospital in April to get an endoscopy and colonoscopy procedure to rule out any serious issues going on, causing my nausea from everything I eat or drink. I was scared to go into the hospital with the pandemic happening, but I knew I had waited months of being ill to not go through with it, and I am so glad I did. The surgeon ended up finding multiple pre-cancerous polyps in my colon that would have advanced quite quickly to an aggressive cancer if I had not gone in. And then he sadly told me they could not find any issues with my GI tract and what would be causing the nausea. I was semi relieved but feeling pretty frustrated that we still didn't have answers. Shortly after the procedure, I experienced severe pain in my esophagus and was unable to swallow food or drink water for nine days without excruciating crying pain. The surgeon who performed the surgery told me it was my fault, that I probably had strep or a vaginal infection and would not help us (I was tested and did not have either). I would later find out that there was severe damage done from the endoscopic procedure.
I ended having the most severe attack I have ever had with my POTS, and luckily my partner helped me through it. It was the first attack where I felt like I was honestly going to die. I could see my heart beating out of my shirt; my hearing started to disappear, I couldn't feel my legs, had trouble breathing, got extremely cold and then started jerking and shaking so badly with tremors. I knew I had to get to the ER. I knew that after complications from the Endoscopy procedure and not getting enough food or water, I was most likely severely dehydrated. After getting much-needed fluids, it was clear to the entire team that I needed to get a PICC Line and receive saline infusion therapy at home regularly. Sadly, it took me collapsing and thinking that this would be my last breath to finally get the help I needed, but here I am.
How My Life and Perspective Changed
I am so grateful to have my PICC Line as a part of my body. Her name is Plantain, and she has profoundly changed my life. I got her in May and have been doing saline infusions multiple times a week, and I feel amazing! Don't get me wrong I still have days of nausea, neck pain, back pain, fatigue, and my immune is compromised and easily bothered. Still, with the help and support of IV fluids, I have gone from bedridden to now walking thirty minutes -one hour in nature every day, cooking, cleaning, doing my hair, gardening, and feeling my life force again with symptoms are a lot less severe. I do miss dancing and running around, which are things I can't do with my PICC Line, but I am finding other ways to move with my PICC line cover while I contemplate what getting a port might afford me in the long term.
It has certainly been a journey, and I am changed because of it. I am certainly not the person I was. I have adapted these sweet medical technologies into my life and body as a queer, black, Afrofuturist, intuitive, herbalist that now has superpowers I would never have imagined receiving. I am uncertain of what the future holds as if there is one thing I have learned: life is just that constant change. Having been so close to death, I feel such praise and grief of just being alive. Praise that life is so freaking beautiful and pain that it all won't last, including ourselves. I am here for the present drinking in every sweet, tender, hard, heavy, joyful, confusing, paradoxical experience I can while being on this planet!
How has dysautonomia impacted your life or the life of a loved one? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members.