Before I go any further, let’s do a quick recap of the known and unknown of what the heck is wrong with me as it can be confusing. My main battle is Dysautonomia, an underfunded, under researched and not well known autonomic nervous system disorder. Basically this means all of your body's involuntary functions stop working (heart rate, blood pressure, temperature, bladder, bowels, etc.) resulting in a host of debilitating symptoms. The average diagnosis is 6 years. Given this disorder disproportionately affects women and onsets during puberty to early adulthood, patients are often given diagnosis like anxiety, conversion disorder, or the classic “it’s all in your head.” I will be writing an extensive blog post about sexism in the medical world another time, but back to Dysautonomia. While Dysautonomia can present differently for everyone, there is no known cure, so patients are left to learn to live with and manage their symptoms. I have POTS (the heart stuff), gastroparesis (paralysis of your digestive system), and generalized Dysautonomia. My doctor has firm speculation I also have Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. I am currently waiting for results of these tests as they both commonly accompany Dysautonomia and I am symptomatic for both. So… how does this affect me? I am constantly fatigued, dizzy, nauseous, I sometimes faint, I haven’t pooped on my own in 7 months, my stomach constantly hurts, I have horrible acid reflux, I am hyper sensitive to food, I have migraines, extreme temperature sensitivities, I can’t stand for long periods of time, walk very far, sleep normally, depression, cognitive impairment, the list goes on and on. Everyday I am climbing a mountain just to carry out tasks that “regular people” wouldn’t think twice about. Except no one would ever guess by looking at me. I do not look disabled despite all I am facing every second of everyday which makes it hard for people to truly understand what a day in my body feels like.
Now, if this wasn’t already enough, as I mentioned in my last post in September I began having separate neurological problems that once again four neurologists tried to write off as “anxiety.” I mentioned in my last post I finally found a great neurologist with some ideas of what could be wrong, and not so coincedently, the next day, things took a turn for the worst. The universe has my back, that’s for sure. I have these convulsion attacks/seizure things that began with an intense migraine, dizziness and shakiness we have yet to find language to describe. I take an Ativan when it happens and it normally goes away, but this week, things got scary. For the sake of simplicity, let’s call them “seizures.”
On Halloween, I was down in Point Loma at my boyfriend’s house trying to have a “normal” day. I don't get to have "normal" days often. Our plan was to go to dinner and a party. Nothing too crazy, but that’s a big deal for me. I had four seizures that day, which has never happened given I normally don’t have more than one in a day. After taking 4 Ativan (2 mgs, which is a lot) they would not stop. I went home before the night even begun and fell asleep convulsing. The next day, it happened again. I had multiple seizure episodes that would not subside following large doses of Ativan. The next day, it happened again and I ended up in the ER where they injected me with so much Ativan I fell asleep. The ER is honestly never really that helpful which makes me feel helpless in situations like these. My neurologist thinks I either have a rare genetic disorder called Dopa-Responsive Dystonia or I am having frontal lobe seizures, but the tests for these things take a while to come back. The Dopa-Responsive Dystonia is the leading theory and the bloodwork for it takes about three weeks, so in the meantime, I have no choice but to be extremely drugged up. I am on both Parkinson’s and anti seizure drugs that completely alter my state. I keep running into things, spillings things, I feel like I have no control of my body or mind, and it’s scary. I feel like a zombie. Despite all of these drugs in me, the seizure episodes are still happening given my tolerance for drugs is so high now. I am afraid I am growing dependant on these drugs since this has been going on for way too long. I am also in the process of going off of my antidepressant so my brain is “clean” for upcoming tests. In full transparency, I am nervous about this. The first time I had a seizure, the ER doctors insisted I stop my antidepressant cold turkey, which you are not supposed to do given the extreme side effects. I became very sick and suicidal. It was horrible. This time is different because I am weening off of it instead, but that memory still haunts me. I am going to Mayo Clinic in December to seek further care, but for now, I am kind of on my own.
Sometimes I envy people with cancer. That might sound horrible to you, but if you have cancer, there is a sense of urgency, knowledge, research and cure. I have had to become my own doctor. I’m barely an adult, I should not have to be reading medical journals about cell theory and vascular abnormalities trying to put puzzle pieces together and figure out what the heck is wrong with me because no doctor believes me. Even with a "diagnosis" of Dysautonomia, there still lies so much unknown and unexplained. I should not have to argue with doctors, convince people that my struggle is real. It’s hard not to feel invisible and frustrated.
Amidst the horrors, I write to survive. There have been times where I felt it might be better to die than to live this life, but writing has saved me. I write to let go. To find gratitude. To move on. On days where I cannot move, I can write. I can share my story as not only a means of healing, but as a means of giving my suffering purpose. Inspiring others. Seeing beauty. Realizing how grateful I am to be in this broken body. Realizing how much I’ve grown. The people I have educated. How many people I’ve helped. How many people I’ve inspired. It is a beautiful thing to be disabled as you have an advantage to learn lessons others do not have to access to learn. I saw a Facebook status by a fellow Dysautonomia and chronic illness sufferer, Mila Anne, today that resonated with me.
It reads, “We do our best to advocate for ourselves; we share links on our social media, pictures of us in the hospital, at doctors appointments, in bed, or getting infusions. We share pictures and graphics that break our debilitating illnesses down to one or two sentences in hopes that someone will read, notice, see, share, and care, because we know most people won't read more than a couple of sentences these days. We share in hopes that on the days that we are too weak to do anything but lay in our beds and sleep, that someone will carry that advocacy torch for us, that they will become our voice and continue fighting for awareness and research funds, because quite literally, OUR LIVES DEPEND ON IT! I understand that there is so much negativity in the world today and the last thing people want to see or think of is illness or pain, but those of us who are suffering and fighting, we don't get that option. We have to think of it even though I'm sure most of us wish we were able to say "Eh, not really in the mood to deal with that today!...All that I ask is that you look, hear, care, and share. All that I ask is that you become a part of our fight, join us, & advocate for us. All that I ask is that you see.
Many people talk a lot of crap about how we are so obsessed with Instagram, how social media is running our lives, how we don’t talk and only text. But to someone like me, social media is a vital asset in connecting, learning, and sharing with others like me. I am so grateful to be alive in a time where the internet exists, without it I don’t know where I’d be. Writing has saved me. The internet has saved me. Thank you for reading my blog. Thank you for supporting me. Thank you for inspiring me.