In the spring of 2011 I started experiencing unfamiliar changes both inside and outside my body and I had no clue what was causing them. Internally I felt a number of things that affected my normal everyday life. I had excruciating nerve pains in my arms and legs. On a daily basis my heart would beat so rapidly, even while at rest. “Floaters” and “flashers” distracted my vision. Overall, I felt extremely physically tired and weak.
Unfortunately, my outside appearance didn’t hide the fact that I wasn’t feeling well. I had lost a considerable amount of weight without any diet changes. My skin color turned paler and my relaxed hair was thinning at the hairline. What used to be thick, luscious hair turned straw-like. That hair that actually was growing thicker happened to be on my face, neck, and back. I also started getting rashes and bruises easily (I’d literally put a hot plate on my lap and a few minutes later would see a red ring that wouldn’t go away for hours). After trial and error with switching out hair and beauty products for others and not seeing much improvement, I found myself cornered with the sudden onset of symptoms I was experiencing. Am I sick? Am I just being over-dramatic? What is wrong with me?
As mentioned in my previous articles, I was anticipating the arrival of my mother, who was coming into town to take me to our annual family reunion. I had no idea how she’d react. Since I was living by myself for so long, it had been months since anyone in my immediate family saw me. I just knew they would notice my physical changes and I’d be bombarded with questions accompanied by embarrassment and sadness.
Not to my surprise, when she saw me she was startled. She checked my pulse and told me my skin was jaundice. I had no idea what that meant. An overwhelming sense of loss of control came over me in just a matter of seconds. I wanted to know what was going on, especially now that my mother was involved and making no secret of her concerns.
The following week we scheduled a series of doctor’s appointments with specialists all over the state. I was admitted into the emergency room to find out something I would have never imagined in a million years.
The crew of doctors circled my hospital bed and instantly I felt like I was playing a role in a major movie. One of them stood forward, touched my foot while I was looking across at them in my bed, and told me I have a vascular (blood vessel) autoimmune disease called Takayasu’s Vasculitis.
I was only 21. My life had just begun. Now it is ending. That’s all I could think about. The sadness in my soul became more prevalent through my eyes. The doctors left my parents and me in the room to let the news sink in. We cried all day and all night.
We didn’t have much to time to sit and sulk, though. What was going on was extreme and rare. Although there weren’t many answers on how to “cure” or “prevent” my disease, I was willing to do anything to save my life and regain my normal self back. Immediately we chose to go with an aggressive plan of attack- chemotherapy once every few weeks, high doses of certain medications and steroids to calm the swelling in my blood vessels down. I started taking dietary precautions, too. Regular doctor visits to multiple specialists would become the norm for me. No more going out to have fun, no more school, no more work. Surviving was now my only priority.Pill after pill, IV after IV, injection after injection, I was physically and emotionally drained. Still, the hardest pill to swallow was the idea that I might lose my looks and the ability to function normally for the rest of my life. I thought, this can’t happen to someone who is pretty, popular, and active, can it? As vain as that might sound, it is the absolute truth. As a young woman in school and working full-time, with many friends and extracurricular endeavors, I couldn't even fathom how much life was changing before my eyes.
I desperately sought out ideas and advice from chronic illness and autoimmune disease blogs like the Vasculitis Foundation. Still, I found little comfort in knowing that nobody in my immediate circle of family and friends knew what exactly what I was going through.
During my hospital stays and my days at home, I purposely chose to be alone most of the time. I didn't want people who were close to me to become worried or even scared. Every now and then I'd make an appearance at a family function or a get-together with friends, but I never stayed the whole time. I often found myself going home to write in my poetry book and just ponder.
It was one of those days that I came across a website called NaturallyCurly.com. I found an article on "chemo curls". This introduced to me the idea that I could possibly regain my grasp on my appearance by actually embracing my hair's natural texture. I hadn't thought of such an idea ever in my life (I'd been relaxing my hair since the age of 5).
Through the end of 2011 and beginning of 2012 I paid close attention to what I needed to change to adjust to my physical appearance the best I could. There were a few old habits that needed to be broken immediately. As far as my hair goes, I stopped relaxing, brushing, and dyeing it at home. I started getting regular trims, braiding my hair at night, sleeping with a satin cap, and slowed down my flat iron usage. Thus my full transitioning process ensued.Find out more about Devri's Hair & Health Journey here.