The month of October is Dysautonomia Awareness Month, and my best friend happens to live with a rare form of Dysautonomia. In an attempt to bring awareness to the Dysautonomia, and Tori’s specific fight, I decided to interview her. I hope you enjoy and find some inspiration in her view on the world, because she certainly inspires me every day.
Can you give us the short version of what form of Dysautonomia you live with?
Tori: So I have an autoimmune form of Dysautonomia called Autoimmune Autonomic Ganglionopathy (AAG). Basically, it is an antibody mediated autoimmune disease which attacks the nerve cells at the ganglia. The nerves that it attacks are part of the autonomic nervous system which regulates pretty much anything that’s automatic in your body.
And how did you first find out you have AAG?
Tori: I got the formal diagnosis in August of 2014, but I really started getting sick back in 2012.
What kind of symptoms were you having?
Tori: I was having a lot of GI symptoms. A lot of vomiting, nausea, getting full too quickly, not really able to eat anything, losing weight, and that just sort of progressed really quickly into full gastrointestinal failure. And then not too long after that I started losing control of my other organs.
You were quite a competitive gymnast before your illnesses hit, tell us a bit about that.
Tori: Yes. So I was, like you said, a competitive gymnast. I really started classes when I was 18 months, but I really started competing when I was 6-ish years old, maybe a little bit younger. And then I moved to Virginia and I was on the team for quite a long time, and then after I stopped competing competitively I still competed at a high school level and I even coached for a little while.
What is the biggest assumption people make about you regarding your illness?
Tori: Honestly I think probably that the biggest assumption is that people think they can string those words together and become my doctor. And really that’s obviously not the case whatsoever. It’s really funny. People who haven’t really known me that long will insert themselves and decide that they’re my nutritionist, or my physiotherapist, or what have you, and decide they know exactly what’s going to help. But I think that’s probably true for most illnesses.
What treatments have helped most to control your illness?
Tori: So I went through kind of a complicated treatment protocol. Originally we decided to go with the less invasive one, which is IVIG, which is an IV medication that is made to strengthen a person’s immune system, and it’s made from thousands of blood donors. And it’s given to the person to strengthen their immune system however it can have really nasty side effects, including meningitis. Not the kind that is contagious, not the kind that’s really often deadly, but it’s extremely painful for the patient and it is very scary. So I got aseptic meningitis after my first dose and I was very sick and I was in the hospital for a total of three weeks maybe. So after that my doctor was like “We’re definitely not doing this again”. So we looked at our other options which were some oral chemo, which I tried, and some oral steroid sparing agents which I tried, as well as some IV steroids which I tried. But nothing really quite helped. And then we decided to try what’s called Plasmapheresis, which is basically… You’re hooked up to a machine that filters the components of your blood, and it separates the red blood cells, the white blood cells, the plasma, and the platelets, and it puts it in a machine that filters them out, and it gives you back your platelets, your white blood cells and your red blood cells, but it removes your plasma, because theoretically that’s where the tainted antibodies are. It replaces it with donor plasma, or donor albumin, the good kind. My doctors refer to it as getting an oil change. So I get an oil change twice a month and that actually has been the most beneficial treatment for me, although it is the most invasive and can cause a lot of problems, but it has been the one that has worked the best so far.
What is a hobby you had to give up because of your diagnosis?
Tori: Definitely being active. I had to stop being so active. I had to stop gymnastics, I had to stop coaching. You know for a while when I was really, really sick I wasn’t able to do any activity whatsoever. I wasn’t able to walk long distances.
And what is a hobby you took up because of your diagnosis, or because you couldn’t do the things you were doing before?
Tori: I got more into art, and writing. I’ve always been a writer, but writing and sharing, and I blogged for a little while, it became more of a passion. But then after I started to find a middle ground with my treatment and started getting a little bit healthier I was able to get into yoga. And although it is a form of physical activity, it’s also a form of spiritual activity, which I never really had much experience with in the past, and now I’m looking to become a registered yoga teacher, and it’s a huge part of my life today.
What would you say to someone newly diagnosed with AAG or another form of Dysautonomia?
Tori: I would tell them that having a strong team of specialists that care about you and listen to you is of the utmost importance, that learning how to listen to yourself and your body, and what you need, is gonna be your ticket to the healthiest life you can live with this shitty-ass condition.
What is your favorite motto to get you through hard times?
Tori: One of my recent go-to’s is “Bloom where you are planted.”. I like that a lot. A friend of mine actually gave me this picture frame. It’s a gold frame and it’s a picture of pink roses and in the middle it just says “Bloom where you are planted.” And it just kind of reminds me if you think of like in the spring, when the wind takes a seed and it blows it from it’s path or where it is sitting and it picks it up and throws it some random place, and it’s planted. And that seed technically has two choices- whether it’s going to just stay a seed and do nothing, or if it’s going to bloom where it has landed, and that’s so true for all of us. Life is gonna throw you some twists and turns, and it’s gonna throw you some curveballs, so you’ve just kind of got to learn to go with the flow.
If you could tell the world something about AAG and Dysautonomia in general, what would you say?
Tori: I think just for invisible illnesses in general, like you, or anybody, cannot tell me, or anybody else, what they’re feeling. These illnesses, just because you can’t see them, doesn’t mean they aren’t wreaking havoc inside, and just because I’m upside down or I’m flipping around or I’m doing something freaking awesome, doesn’t mean that I don’t go home and suffer the consequences that are actually really, really hard to deal with. So it’s kind of like your cliché, “Don’t judge a book by its cover” kind of thing.
Where do you see yourself in 5 years?
Tori: Oh shit… Where do I see myself in five years? You know if you had asked me that 5 years ago quite frankly I would have said dead. And that sounds really depressing, but 5 years ago before that I would have told you that I’d be in some branch of the military as a paramedic or a nurse or something like that so I really don’t know. I definitely hope to be a nurse. I really want to be a forensic nurse. But I’m learning to kind of ride the waves, because when you live with a condition like this you never really know what’s gonna happen.
Tori Anderson lives in Richmond, Virginia with her two dogs, Remi and Rosie. Tori was formally diagnosed with AAG in 2014 and shares bits of her story on various social media platforms, spreading awareness for a large array of important issues. In her spare time, she volunteers with domestic violence and sexual assault survivors, and has aspirations of becoming a yoga teacher. You can follow her day to day on Instagram @vma2770.
You can also donate to Tori’s fundraiser for Dysautonomia International by purchasing one of her shirts here.