My Takayasu's Disease fight
My life before Takayasu's was relatively normal and healthy: I was an ambitious, driven, determined, student and budding creative professional with an appetite for success and independence. In addition to finishing up my Public Relations studies, I juggled multiple part-time jobs to sustain myself and ensure that I would hit every 2, 5, and 10-year objective that I had set out for myself.
Then, one day, my life changed within a matter of weeks.
During Spring 2011, I lost the feeling in my wrists at work. I thought it was because I was always on the computer, so I wore wrist braces to ease the numbness and tingling. Then I started losing a bunch of weight and my skin turned yellow. I started thinking I had the flu because I would cough and have cold sweats throughout the day. I lost my voice suddenly, and this lasted about four weeks straight. At night, a super fast heartbeat would wake me up out of my sleep, causing a pain that people often described as a heart attack. I lost my vision for about 10 minutes in the store. A few nights after that event, I got up from bed to use the restroom and fell to the ground because I had completely lost the feeling from my knees down. I started getting a debilitating migraine everyday that didn't go away, and that was the final straw for me.
About eight weeks into the strange and recurring symptoms, I knew I needed to tell my mom.
Once she saw me, we checked into the hospital that same day and immediately went through a series of tests and scans to get to the root of the problem.
Less than a week later I was officially diagnosed with Takayasu's Arteritis, a rare, incurable vascular disease that was violently ripping my life away from my grip as I knew it.
Only 1 out of every 2 to 3 million people have it. Takayasu's has no cure and there is little information about how to treat and monitor it on a longterm basis.
When I was first diagnosed, I was placed on a high dosage of prednisone to reduce inflammation of my blood vessels and encourage normal blood flow throughout my body and to my heart. I received a monthly IV infusion called Cytoxan, a chemo drug that forced me into a year-long period of bed rest, full-time caretaker included. That year, I took 20 pills a day -- it's on my Instagram if you don't believe me! During that period of my life, I felt hopeless. Everyday I thought that I was going to die. I was depressed and couldn't see the light; my body felt like a prison where I was serving a sentence for. I didn't understand what I had done to deserve this. Being the overachiever I was, having little access to information and resources in order to have a fair chance at recovery ate away at my hope.
In 2015 I officially got into a "remission" state with my disease when my rheumatologist put me on a different treatment called Actemra, on a montly basis through IV infusion. I no longer had to take all those pills and other meds, and I was able to return to work full time and travel again. Life was amazing.
During December 2017, I spent some time in the hospital due to a mysterious blood clot in my mesenteric artery. For that reason, I have been placed on coumadin/warfarin, a blood thinner that makes me have to watch my diet and lifestyle more closely. I'm back on the steroid, prednsione. My NYC medical team decided to put me on a new monthly IV infusion called Rituxan/Rituximab. I am hopeful that this will manage the levels of inflammation my body has endured since being "out of remission" from the disease.
Here's the dilemma.
As a full-time freelancer and creative entrepreneur, I have to cover healthcare expenses out of pocket. This detail is overwhelming to say the least. I've been working for myself since March, and months later, I am still catching up on the hefty hospital bills from the December/January, bi-weekly doctor visits, monthly infusion treatments, and prescription meds that I refill every 15 days.
You can imagine the kind of strain all of this gives someone who is pursuing their creative entrepreneurship in a city like New York.
Although I called this a fight in the beginning of the campaign, I'd like to think of myself as a warrior. This is a battle, indeed, but not one that is in vain or will oppress me. Instead, it is one that empowers me to continue a path that is filled with integrity and passion.
Thank you, as always, for your continued support.