Please share your story?
At 15, I got sick. Prior to I was a very competitive athlete and a gifted student, but I suddenly found myself battling for simple acts of survival. The first two years, of my illness, were spent spent fighting for doctors to listen, as my body fell apart. I ended up over 140 days in the hospital over a 12 month period, trying to convince doctors that my issues were physiological and not "all in my head”. Mental illness was treated with scorn, as if the possibility that my symptoms could be psychological negated their effect. I was losing weight, cognitive function, and hope. The doctors didn’t listen, pushed my body to the point of collapse, added medications that gave me life-threatening complications, and physically injured me in both the physical and emotional sense. My parents (I was 16 at the time) wanted to discharge me against medical advice, but were told that if they did, it was likely that child protective services would be called. After seventy days, I was released on a whim by a holiday doctor- pure luck. Over the next few months and years, my family and a team of doctors, that I trusted, worked incredibly hard to bring my body back from the edge. I was diagnosed with a rare genetic disorder, an autoimmune nerve condition, mast cell activation syndrome, and gastroparesis. These diagnoses allowed for treatment of these conditions. However, even while my body improved, the traumatizing recollections remained- but in an interesting way. For so long it felt as if I was looking back on the experience from the view of an outsider. Logically, I knew it had happened to me, but the visceral response was absent. As I moved out of survival mode, my brain brought back experiences I had forgotten and reignited feelings that had been buried. This past summer, my health cratered again. This brought memories back in brutal technicolor, forcing me to change my coping skills and realize that the medical professionals caring for me were not like the ones who hurt me. I poured my heart into writing, and as I shared my story I was contacted by so many young women who had had similar experiences. I’ve found my joy and passion in patient advocacy, and I strongly believe that treating mental health in patients with chronic illness is just as important as treating the physiological diseases. My psychiatrist, medication, coping skills, my family and service dog- are all integral to my stability, and that's nothing to be ashamed of. There are so many ways to manage mental health, and acting as if it's a character flaw silences patients and denies them the opportunity for treatments that could greatly improve quality of life. If sharing my story openly has helped even one person feel heard and understood, then all of this is worth it.
How has having Taxi helped you?
Taxi has made a incredible difference. I received him in June of last year, and he's brought me so much joy. Of course, he helps with the physical tasks (opening/closing doors, turning on lights, retrieving my meds, etc.) but he also is an enormous emotional support for me and my family. He comes and asks to play when I’m anxious, he lays with me on the bad days, and he provides a lot of laughter for my whole family.
Can you share what the port is for?
I have what's called a portacath, a permanent IV line surgically implanted under the skin, and accessed with a needle once a week. It allows me to receive intravenous medications at home, and to have IV access when I am in the hospital. Over time, my veins have become difficult to access as a result of scarring and malnutrition. I also have a GJ tube (gastrojejunostomy) that feeds me. It goes into my stomach, and then has an extension threaded down past the stomach, into the jejunum. My stomach doesn't process food, and so the tube goes past the stomach into a part of the gut that does function okay. It also helps me receive what's called "elemental" formula, which is hypoallergenic and basically pre digested, so my body isn't allergic to it.
Does that mean you can't eat food?
I can eat some foods. Pretty much everything I eat makes me sick in some respect, but I can and do try to eat. Apples and potatoes are my main foods at the moment. I love to cook, however, and am constantly trying new recipes, even if I can't eat them!
What does your life look like now? What do you do for fun?
My life revolves around my health and school. I'm a senior in high school, and my goal is to attend university next year. I take classes twice a week, and then in between that I do work online. I have at least one doctors appointment a week, most more. For fun, I like to train with my service dog (Taxi) and hone the skills he already has, write, and I love brush lettering and calligraphy
What compelled you to share your story?
I’ve been given so much help from others, who have walked this road much longer than I have. Whether it is a hack to carry meds without needles, advice for long hospital stays, the occasional true inspiration that helps drag you out of bed- it has all been invaluable. When I became the veteran of my disease, I wanted to start spreading information, support, and hope- along with the knowledge that you aren’t alone. I wanted the knowledge I'd gained to go somewhere, and to give back the support I had been given in some of my dark days. There’s so many things that I've learned along the way (big and small) and being able to pass that knowledge on has been the greatest gift of all.
What encouraging words would you tell someone who has a similar story?
To take it one day at a time, and recognize the little victories. Recovery (physical, mental, emotional) is not and will never be a straight shot. One bad day or a bad week does not negate the progress that has been made- it doesn't push you back to square one, or mean that you aren't trying hard enough. It’s difficult to not blame yourself when you’ve been working so hard and can't see the rewards. Progress can be easily measured in the small victories. If you’re only looking for the major landmarks and mountains to summit, you can miss the the daily triumphs on the way.
How can we follow along with all that you are doing? (ei: blog, social etc?)
You can follow me through social media (@actualmutant on Instagram and Twitter, as well as my blog: actualmutant.wordpress.com. You can also read my full story here: http://www.invisibleproject.org/www/participants/pediatrics/savannah-orth/, or contact me at email@example.com.