My Two-Year Journey to the Diagnosis of Lupus and Psoriasis

Before I start to explain my personal journey with lupus and psoriasis, I will need to give a little bit of background on what was going on prior to my diagnosis. It is a rather long story since it covers events that happened over the past 2 years, but I want to be thorough in describing exactly what I experienced during this time, so people can better understand this illness.

In late September of 2017, I was going through a very stressful time in my life.

I now believe that there is a connection between trauma/stress as a trigger for this condition.

My brother and I were forced to move out of our childhood home that we lived in since we were in kindergarten. Our mother had to too, but she really didn’t do any of the work necessary (which is a whole other situation I can explain later). We all had to deal with the loss of this beautiful home where so many memories have been made. Emotions were tense every day and my relationship with my mother was strained ever since I learned exactly what she was hiding from us all these years. Simply put, her financial irresponsibility was the reason for us losing this house. She made some very bad decisions over the past few years which led us to this moment. I knew she wasn’t about to step up now and start doing what was necessary to properly sell this house, so I cleaned everything out (and I mean everything). Our garage was filled from wall to wall with boxes and boxes of random crap that we collected over the years. Everything was covered in dust, but alas I am a true Virgo (and we love a good cleaning challenge), so I put my face mask, goggles, and rubber gloves on and went to work.

It took several weeks of throwing things out and two yard sales to get it ready, but I did it! After a 45 day escrow period and some more “surprises” that my mother left us, we finally moved out and gained some closure. I was ready for a new beginning and felt free from the restrictive living situation I was stuck in before. My Aunt Stacey (my mom’s sister) let us sleep on her couches while we tried to find jobs and searched for our own apartments. This is when the first strange signs of my autoimmune disorders started popping up.

After sleeping at my aunt’s place for a few weeks, I noticed that I started getting an itchy, flaky spot on my scalp near my hairline. I just thought it was normal dandruff so I used some Head & Shoulders shampoo to try to make it go away. It worked for a little while but then it came back and spread out even more all over my scalp. I knew it might need the diagnosis from a doctor but I was unemployed and didn’t have health insurance. I was hoping it would just go away on its own. I just dealt with it for a while.

Sometime in November, after downloading the Bumble app and lots of swiping left, I started getting wrist pain in my right hand on the pinky side. My middle finger and pinky would also get swollen and stiff. I didn’t know how else to explain the cause, so I seriously thought I was spending too much time on my phone. Thankfully, the pain was worth it because my first date through Bumble turned into me meeting my current boyfriend.

After a few months of seeing each other, it was January of 2018 and I started a new job at a fashion styling start-up company in LA. It was a full-time position and they offered health insurance (a win for me), so I couldn’t wait to start! I still had some wrist pain when I started, but I decided to just work with a wrist brace and took some ibuprofen to make it through the day. That worked for a while, so I didn’t really think about it anymore. Months go by and life was normal. I moved out of my aunt’s and got my own studio apartment! I even got to take a trip to Vancouver (which is where we were in that picture) and enjoy all the sightseeing and hiking.

Then, around September of 2018, my job got very busy and stressful (lots of customers to deal with online) and a lot more pain started bothering me in areas where I didn’t feel them before. My work was mostly at a computer and my forearms became extremely tight from typing all day. My shoulders and trapezius muscles were tight as well and if you tried to squeeze them, they felt super hard and looked visibly swollen. I knew something was wrong because this pain and stiffness started to get in the way of my day to day activities.

One day, the pain was so unbearable I wanted to break down and cry at my desk.

It just felt like my whole upper body was on fire. If you know me, I have a high pain tolerance, so this was serious. Any movement of my arms or hands would set my nerve endings off. After I spoke with my manager, she suggested I go to the local urgent care and see a doctor there. I knew I couldn’t work for the rest of the day, so I decided that was the best thing to do too.

At this time, I completely thought this was a work-related incident and believed my body was super sensitive to being sedentary and doing highly repetitive tasks. I couldn’t think of anything else because all the pain was only in my upper body. So I filed for worker’s compensation, as it was suggested by the urgent care doctor, and began to seek treatment for it. He recommended physical therapy twice a week for 10 weeks. My work had to have me work at the front desk instead of my normal duties because they didn’t want to injure me any further.

Going to physical therapy was a huge learning experience. I’ve never been seriously injured like this before, so I learned about KT tape techniques, Biofreeze gel, electric muscle stimulation, warm compress, and stretching exercises to help me heal. All of which were effective and temporarily improved my pain and mobility. However, when I went to sleep each night, everything was stiff and inflamed again in the morning. I was taking 800mg of Advil every day to lessen the inflammation but it started hurting my stomach and I didn’t want to get ulcers, so I had to stop and deal with pain 100%. During therapy, I could barely do a lot of the exercises they asked me to do. I remember having to hold a pole with both hands as it was parallel to the floor and then trying to lift it over my head. It sounds simple (and it usually would be) but I couldn’t even lift it higher than my shoulder. My joints and muscles were that inflamed and it hurt me too much.

Halfway through my therapy sessions, it was now November, and Clyde and I had to attend his cousin’s wedding in Cancun. Despite all the physical suffering I was going through, I was still excited to meet his family and be his wedding date. It would be my first time meeting them and my first time in Mexico. To prepare, I just made sure I didn’t pack anything too heavy because I couldn’t carry it if I did. I could barely lift anything or even put on a jacket without assistance at this time. When we got there, the weather was warm and humid, in a comforting way. The wedding ceremony was so beautiful and spending time with his family was just the best. I was so glad to finally experience something positive and not focus on my pain.

Of course, the good times didn’t last long. A few days after we got back to California, my middle finger on my left hand swelled up like crazy and for no reason at all. It hurt so bad, I couldn’t even go to work. I just stayed home and sat through the awful intense throbbing pain. This didn’t add up to what I thought was the reason behind my pain so I had to look it up and see what it could be.

According to WebMD, a few autoimmune disorders could cause this (rheumatoid arthritis, psoriatic arthritis, lupus) so the only way to know for sure is to see a rheumatologist. After visiting my PCP (primary care physician), she referred me to the best rheumatologist in Long Beach. Unfortunately, she had a 3-month waiting list for new patients. I was praying my body could hold on for that long. I needed to see her ASAP because I was desperate to relieve this pain. Since it was December of 2018, I was supposed to wait until sometime in March to see her.

While I was waiting to see my rheumatologist, the pain started spreading to other areas of my body. Now, my knees were hurting and swollen along with my ankles and shoulders on a daily basis. My apartment was a studio, but a loft-style with two levels, so I had to walk up and down stairs anytime I needed to use the bathroom. Bending my knees hurt, so I had to slowly and carefully use the railing for guidance and take each step down one by one. I couldn’t descend normally because it was too much pressure and impact on my joints.

In January 2019, I experienced the worst pain I’ve ever felt in my life.

Throughout this time, I was on some temporary pain relievers prescribed by my PCP that did not last long and would wear off when I was sleeping. I would then wake up in agony and try to go back to sleep. I usually couldn’t and would just lay awake. This happened night after night. It’s a vicious cycle because lack of sleep can trigger my flare-ups to be worse the next day.

One morning, I literally woke up and every part of me was inflamed. A thin bedsheet was covering my body and I could feel it resting on my skin. This simple thing felt like fire on my skin and in reality, it was barely touching me. I needed pain meds right away but the problem was I couldn’t open my bottle because my hands hurt so badly. Any pressure was too much to bear. At that point, I just started to cry because I felt so hopeless. I took a moment and called my boyfriend explaining what happened. Thankfully, he was able to come over and take care of me. Through this experience, I felt like such a fragile broken person and not like my usual self. Simple tasks suddenly became enormous issues. Of course, those close to me were understanding of my suffering, but it’s just difficult to live this way. It’s so isolating and frustrating not being able to do the things you used to do with ease.

Finally, my luck changed for the better and my rheumatologist had an opening available sometime in February. Thank goodness, because after that day I don’t know how long I could have held on. Each day was such a struggle. After our first meeting, I had to do some more blood tests and monitoring. She started me off with Plaquenil but I got an allergic reaction in the form of a very itchy rash all over my torso and thighs about two weeks in.

Since I was allergic to that, the only other option was a low dose steroid (prednisone) to calm down the inflammation. Although I was concerned about the side effects, I had to give it a try and I’m glad I did because things got way better for me in a short amount of time. I took it for less than 2 months but it got me to a point where all the swelling went down and the pain subsided.

I saw her again and this time, we found out it was not just a form of autoimmune arthritis as I first suspected. My blood tests showed it was lupus (SLE). This diagnosis was hard to take at first because this is something that has no cure and as a chronic illness, I am going to have to manage this condition for the rest of my life. It puts me at higher risk for different types of cancers, kidney disease, and lung complications. There is no specific cause for lupus either. But I accepted it once I got the tell-tale sign of lupus (the butterfly rash) on my face.

It might be a little hard to see, but it’s pretty red across my cheeks and nose. You can also see some psoriasis patches near my hairline if you look closely. If you saw me in person, it was super clear that I had a rash. When I had it, it felt warm, slightly raised, and a little itchy too.

Currently, I’ve been feeling a lot better after I started taking methotrexate. It took a while for it to start working but it definitely suppressed my immune system enough to stop my lupus from being too active. There are a lot of possible side effects from taking this drug and I won’t be able to take it forever, but I’m glad there is something out there that actually works for me. At this point, my psoriasis actually bothers me more on a daily basis than my joints do. I’ll talk more about how I deal with that in another post soon.

If you read this far, I know this was a super long and detailed post, but I wouldn’t be a true Virgo if I didn’t give you all the details. My intention is to create more awareness of lupus so I can possibly help others who may be suffering from similar autoimmune disorders as well. And to those who know me personally, I wanted to give you more information on why you haven’t been seeing me around much in-person or on social media.

This is my complete story of what I’ve been going through for the past few years and I hope this will open a door to more honest and direct conversation. By learning more about lupus from my first-hand experience, my hope is that people begin to be more aware of these hidden illnesses and that we will come closer to finding a cure for this disease.