“It was the summer of 2003. I had just graduated high school and was a month into my first semester at college. I was excited about this next chapter of my life. I had just started working full-time and was planning to start saving to move out and be more independent. I had noticed a little after my 18th birthday that summer, I was starting to feel a lot more tired than usual but I figured it was because I was now a full-time worker and college student. I remember getting ready for class one day and while I was combing my hair, a clump of hair came out in my brush. I remember a slight panic as I ran my hands through my hair to see where it came from. That was the beginning of what has now been a 17-year journey.
I went into my mom’s room to show her my hair and ask for help. At this point, I was worried I had maybe accidentally touched the wrong thing and wasn’t really sure what I may have done wrong. I didn’t think it was anything serious. My mom seemed confused as well and just said we will keep an eye on things and see what happens. As the weeks went on, more and more hair would come out whenever I would brush or comb my hair. I had never been concerned with my appearance until I started to lose my hair. One day, I stood in front of the mirror and ran my fingers through my hair and over all the bald spots I now had. I was sad because I didn’t want to go out in public. I didn’t know what to do so I thought coloring in the bald spots would help but I honestly looked ridiculous, and I started wearing wigs.
My mom had started taking me to different doctors to see if they could help me. The first doctor I went to looked at the spots and stated it was a skin irritation and suggested giving me shots in the bald spots to help trigger regrowth. I am not sure why I allowed a doctor to just randomly shoot my scalp up with medication without running tests first. He said I would need several treatments but I left the office feeling like something wasn’t right. I was tired all the time, my hair was falling out and not growing back, and I felt confused because I didn’t feel the doctor was correct about what was going on with my body. So, I asked my mom if we could get a second opinion.
By now, my eyebrow hairs were falling out too, and I had started to experience joint stiffness and swelling. I was hoping to get an answer to my health problems because I was scheduled to see a rheumatologist. So we went to see if she would be able to give answers to all the things I was now experiencing. She did a physical exam and said it was a skin issue and I should go see a dermatologist. It was at this point I started to feel defeated. She didn’t run tests and I was starting to feel like I was crazy. Maybe nothing is wrong with me. Throughout the 7 months since my symptoms started, this was the first time I felt my spirit break. I was tired of going to different doctors only to not get answers to my health problems. I was tired of feeling ignored. I was tired of feeling like I was not being taken seriously. We scheduled an appointment to see a dermatologist.
I walked into the dermatologist’s office and sat down and waited anxiously to be called. I sat there thinking, ‘This is it.’ I had been examined and poked far too many times to still not know what was wrong with me. I told myself this was it because I was honestly at my breaking point. The doctor came into the room and I explained everything I had been experiencing the last 8 months. My hair loss, my skin rashes, and my aches and pains. I remember he was super nice and told me, ‘I think I know what it is but I would like to take a skin biopsy to be sure, and then we can discuss the results when we know more.’
I don’t know why but at that moment, all my anxiety about my health was gone. He seemed like he knew what he was talking about and I honestly was tired of worrying and stressing about the unknown so I believed him. He took a skin biopsy from behind my ear where a rash had developed and scheduled me for a follow-up appointment.
It was the day of my follow-up appointment to get my test results. I was excited to get to my appointment because I was hopeful. I remember looking him straight in his eyes and waiting patiently for him to speak and say something, anything. He looked over my file and said, ‘Okay, I got good news and bad news. Which would you like first?’ I told him good news than bad news. The good news was he had the answer I had waited 8 months to hear. He told me I had Lupus.
At that moment, I felt relieved I had an answer to what was wrong with my body. I was excited because I didn’t know what having Lupus really meant. I did not have anyone in my life that had Lupus so I relied on my doctors for everything. He explained Lupus was an autoimmune disease, and how it affects healthy organs and tissues. He tried his best to explain what Lupus was and what I would now have to deal with for the rest of my life. He did his best to explain to an 18-year-old what to expect moving forward. But, all the explaining in the world could not prepare me for what having Lupus really meant and how it would impact my quality of life.
I would spend the next 7 months in and out of the hospital. I remember trying to still work full-time and go to classes while being in constant pain 24/7. Somedays I would be fine and others I would wake up with a swollen face, legs, hands, and or very painfully stiff joints. My sister would sometimes have to pick me up from work and drive me straight to the ER because the pain was unbearable for my 130-pound body. In a very short time my health declined but yet I was still hopeful. I think I still hadn’t grasped fully what my life would be like with Lupus. A little bit before Christmas 2004, I went to the hospital for chest pains and was admitted. They kept me a few days for observations and the night before I was to be discharged, things took a turn for the worse. This would be my first extended hospital stay.
That night, I started coughing in my sleep and my friend at the time became concerned and convinced them to see why I had started coughing. I really don’t remember too much after that because I was in and out of consciousness. I was told I had developed pneumonia during my hospital stay and they had rushed me to ICU. I was in the ICU for a week. I had lost a ton of weight and I remember I would wake up and couldn’t stay awake long before falling back asleep again. During one of my ‘awake’ moments, I remember looking at the doctors talking to my mom and brother. They showed them an x-ray of my lungs and they were almost completely filled. He told them if they couldn’t get it under control, it wouldn’t be good for me.
At that moment, I didn’t feel scared or anything. I just remember thinking, ‘Okay, I have to fight harder.’ I fell back asleep. The next time I was awake I felt way better. My lungs were starting to clear up and they were planning on moving me to a regular room. Amazingly, I was still in good spirits and the week in ICU hadn’t affected my happy-go-lucky spirit. I did however get my first lesson in learning to ask questions about my health plan and medications. I was prescribed antidepressants by a doctor that never talked to me so I was confused about the prescription and refused to take it. I started asking questions about everything moving forward. I never had a reason to question my health plan until that day.
My doctor in charge of my care during that hospital stay had never gotten a chance to talk to me because I was knocked out most of the time in ICU. He, at some point, decided I needed an antidepressant because he had concluded I was depressed. I would have never known had I not asked questions about what pills the nurse was giving me once I had been given a regular room. My nurse was even concerned because she thought it was something I had already been taking. I now started to question everything concerning my health at every doctor’s visit.
I was released and spent the next 4 months learning to adjust to my new norm. I had always been a pretty healthy kid growing up but now I had Lupus. It was at this point I started to realize how much my health was starting to affect my social life. I was born and raised in South Florida and I couldn’t even go to the beach without having a Lupus flare-up. The sun was, and still is, not my friend but I can tolerate it better now. I had to stop going to school because I just didn’t have the energy to function. Work-life was even worse. I had gotten so sick my routine was if I wasn’t at home I was either at work or the doctor’s office. I could not go out with my friends without having to plan out everything. I had to have a plan in place in case I started feeling sick. After a while, I just started to not go out at all. I would only go to work or doctor’s appointments. If I needed groceries I would go to Walmart at 2 a.m.
I had started adjusting my life around my Lupus. I started comparing my life to others, which wasn’t helpful at all. I didn’t understand, why me. Why did I have to have Lupus? I didn’t have the luxury of just getting up and going like everyone around me. I had to be responsible even when I didn’t want to be. I didn’t want to always consider my health first before deciding if I could do something. I just wanted to do it.
For a time, I felt sad, I felt broken. I even started to feel like a burden to my friends and family. I stopped sharing my health progress and started keeping things to myself. I felt alone even though I wasn’t. I realized I was heading to a dark place when I spent the whole day crying and didn’t have a reason for my tears. This is when I started to pray daily because that has always been the one thing that makes me feel better. I started to try to find a balance between listening to my body and doing the things I once loved to do.
Exactly one year after being diagnosed, I was in the hospital experiencing my first kidney failure. At this point, I had been fighting the feeling of being sad because I hadn’t been sad about my own life in a very long time. I didn’t want to be sad. I just wanted to be normal like everyone else. I wanted to be able to go outside in the sun without feeling like I’m being drained like a battery. I just wanted to be normal like my friends. I just wanted to be able to do the things people my age were doing, without having to think about the consequences my body will experience. I fought hard to get my health back on track and thankfully I had a great support system throughout it all.
My mom, my sisters, my brother, and my friends were my rock through it all in the early days of my disease. When I would be admitted, they would come and spend time with me in the hospital, and my sister drove down from college when she could to spend time with me. It honestly means the world to me I have such amazing people in my life that love me and have always been here for me, even when I did not want them to be. I’m thankful they didn’t listen to me and just continued to support me through it all. I just didn’t want them putting their life on hold to take care of me. In addition to my support system, I also turned to God more. I remember I would pray every single day since my first kidney failure. I prayed for God to heal my body. I wanted him to take this disease from my body because that’s what I wanted. I learned quickly though, God gives us what we need not necessarily what we want. I remember praying this prayer for years.
I am not a stranger to loss. I lost my sister, when I was very young, to cancer. But, I was shocked when I lost my brother a few years into my Lupus journey and it nearly broke me. At the time we lost him, I was in the middle of a really bad flare up and with Lupus, I have to avoid stress at all cost. I did not handle it well and became very sick again. One day, I remember driving home from the store and I had an anxiety attack. I felt like I couldn’t breathe. I felt like I was gasping for air. I felt scared. I thought I was dying. I didn’t know it was an anxiety attack because I hadn’t had one before. I put my a/c on full blast and stuck my face in the vent in an attempt to get air. I was panicking. I started saying Jesus over and over and over again. Eventually, it stopped and I was able to get home. My prayer for God to heal me changed to prayer for strength. I prayed for God to give me the strength to endure. I wasn’t handling losing my brother very well at all and I needed strength to be able to make it on this journey. I stopped asking for healing and started asking for the strength I needed for this journey I was chosen for. I needed to be stronger. I wanted to be stronger. I didn’t like the person I had become. I was sad and possibly even borderline depressed at this point. That isn’t who I am.
I have experienced a lot in these last 17 years. I’ve had countless visits to the ER for everything from chest pains to weakness. I’ve had pneumonia twice and been in the ICU. I have had two kidney biopsies and two kidney failures, six rounds of chemotherapy, and so many other treatments to get my Lupus under control. I could go on and on about everything that I have experienced in these last 17 years of my life. I have endured and learned so much about Lupus, life, and myself. I am so much stronger than I knew I could be.
I want anyone dealing with Lupus to know it is not a death sentence. It is possible to have a quality life while living with Lupus. I have had to make many adjustments in my life to get to where I am now with my health. I learned for many of us in the autoimmune community, stress is a big trigger for our flare-ups. I now avoid stress at all costs. If I start to feel overwhelmed, I pray, bake, and talk to friends and family. My mom has been my everything through this entire journey. I am grateful God chose her to be my mother. She made me feel as if I can do anything, make it through everything thrown my way in life. She is my superhero. My fiancé has also been a huge help with keeping me happy and stress-free. He helps keep me focused and is right there to talk me down if I do start to feel overwhelmed or stressed. I think it helps he is a cancer survivor himself. So he understands what it feels like to be sick, and I like I have someone I can talk to that can relate.
I also have a patio garden now, thanks to quarantine, and I am now a full-on Vegan. Which I never in a million years would have predicted because I loved cheese. I still do but now, it’s just vegan. I advocate a healthier lifestyle through healthy eating habits because I am currently keeping my Lupus in ‘remission’ by doing just that. After switching to a fully vegan diet in 2017, most of my lupus symptoms are either completely gone or at a minimum. This last year has been really hard on many of us but I am thankful God has kept and continues to keep us safe. I picked up a few new hobbies but gardening has really kept me busy and focused even more on my health now I am growing my own fruits and veggies. Lupus is just a chapter of my life, it’s not my whole book.”
This story was submitted to Love What Matters by Stephanie Jerry a.k.a VeganLupie from Atlanta, GA. You can follow her journey on her Instagram, Youtube, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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