At the age of 16, my mother began to grow concerned about moments when I would space out. To me, these were just random “deja vu feelings” and head sensations that I would get since I was a kid. These were finally identified as petit mal seizures, or absence seizures, mostly present in children in which most outgrow. I didn’t grow out of them and was put on seizure medication. I was eventually diagnosed with lupus at the age of 19. The physician believed this was associated with my unexplained seizures. The diagnosis was disheartening but was at least an answer. I didn’t completely believe I necessarily had lupus, but I was grateful to be somewhat understood. I knew I had some immune issues and the doctor saw high ANA levels, which are antibodies against normal proteins in the nucleus of my cells, a finding commonly present in lupus. Lupus was the best diagnosis at the time. After the diagnosis, I was on lupus medication for years that required monthly infusions. Being 19, I was pretty clueless about what was going on, as my amazing mother helped me handle my medical affairs. As I became older, I began to put my health into my own hands. This is when I took more of an interest in my mental health and was diagnosed with OCD and depression, which at the time I didn’t really believe was the case. I could deal with physiological ailments but mental issues were harder to accept. After growth and therapy, I do understand that I have OCD tendencies, bouts of depression, and a good amount of anxiety that accompany my physiological conditions, and that’s okay. I continued to battle chronic fatigue, brain fog, muscle pain, and mental distress. As the fatigue and brain fog worsened throughout the years, I discovered greater challenges in putting words together effortlessly the way I used to, which made writing and conversations more difficult. I eventually would get used to my different versions of normal. God always helped sustain me, I enjoyed my life, and school was a good distraction from my health. In 2019, the last year of my master’s program, I decided to come off of my medications under my doctor’s supervision. I was doing okay but in planning a wedding, finishing my program, and the many other items on my plate at the time, I think I stretched myself a bit too thin. I began to experience neurological and mental challenges that I hadn’t in the past. I wasn’t sleeping much but when I did, I’d wake up the next day and feel as if my brain chemistry changed. It was so frightening. I completed my master’s program, but my anxiety, depression, cognitive deficits, and stomach issues were at an all-time high. I needed some idea of what was going on, so I went searching for answers. The rheumatologist I saw didn’t see high ANA in my blood work anymore, which meant I didn’t actually have lupus at that time. The gastroenterologist felt my stomach symptoms aligned with IBS, a symptom of fibromyalgia that gets triggered by anxiety. After a while, I went back on a medication for fibromyalgia that’s also for depression and anxiety. I also practiced healthy interventions like an anti-inflammatory diet, meditation, etc. Eventually, everything started to get better, right in time for my bachelorette party, a postponed wedding, the COVID-19 outbreak, and pandemic. I was doing pretty good in 2020 when the world was unfortunately In the midst of chaos. I even got married to the love of my life, who has been by my side for 10 years of my many health challenges. Things were going well until I came off of my medication under my doctor’s watch again in 2021. I started experiencing all I went through last time but even greater. I was a prisoner of my bed the last time around and could barely open my eyes. I felt even worse this time but couldn’t hold myself hostage in my room. I thanked God for the people in my life that gave me reasons to get up, my husband for encouraging me to get up, and my drive for actually getting me up. The drive I only have because of my faith in God. I came off of medication a few years ago with hopes of not needing them again, but I do. With seizures, and neurological symptoms affecting my body and mind so heavily, I am grateful for a solution that can offer me better functioning. I am back on my fibromyalgia medication and seizure medication which I accept. Once again, it was about acceptance, accepting that this is what I need at this time in my life. Some days are harder than others to be positive when you don’t feel positive. There are times I feel overlooked, ignored, and defenseless because I’m suffering without clear, concrete answers to why or how to truly make things better. I’ve found that it’s best to try to get outside of myself the best I can, despite the desire to sink into a pity party. Well, first, I do a bit of pouting, if I’m being honest, but I then try to pray, breathe, meditate and focus on my blessings to help reinforce more positive energy. I always believed that all of my health struggles are for a reason and that one day, I could help encourage others because of them. In the spirit of being honest, for a long time, I felt that I needed to overcome my health issues first to tell my story, but I’m sharing it right now, still in the midst of it. I am still learning acceptance and the idea of not always having the answers or control of what happens in life. My health journey continues but what is absolute is God’s impact in my life and the strength I’ve gained from my health experiences. At this stage in my journey, I am learning how to worry less and trust God as well as the person He helped me to be. I have no idea what is next, and finally, that is okay because I’d rather that be in God’s hands and trust the power of my faith.
