10 Years Before I Learned What Was Wrong

Hello, my name is Qua’Shana Brown and this is my Lupus journey. This journey only goes to really when I got my official diagnosis. A lot happened afterwards. Warning, this is really long!!

My early symptoms

I graduated from high school in 2010. All throughout college I was having many different issues. I was getting these boils all over my body. I was getting sores on my scalp and all my hair was falling out. When I went to the doctor they tried to say that it was stress of college life. I went to many different doctors after that and even saw the dermatologist who said I had Seborrheic Dermatitis. They gave me meds and everything.

Jumping years later In 2016 I started having this random swelling in my face. It was just a appear randomly. So one day nothing will be wrong with me the next day my whole face which is to be swollen or parts of my face would be swollen. And then a few days later my face will look like nothing had happened. In 2017 the swelling I got so bad on one side of my face that I couldn’t even really talk. I had to take a day off from work and everything.

In the end of 2017 to beginning of 2018 I started getting like bumps or sores inside of my mouth. It was in the corner of my mouth under my tongue. It was like a big giant ball of fluid that I can move around with my tongue. It would come and go. The end of 2018 I started getting sores on my tongue. It would hurt and bleed. I couldn’t eat or drink anything without it causing me issues. I went to the doctor and they said I had a geographic tongue. But my tongue looked like none of the pictures from online. I would also get bumps that would appear all over my face.

Growing list of symptoms, still no answers

In 2019 I don’t even know how to describe this year. I had sooo much happen to me this year. My father had passed away and all my symptoms had been amplified. My scalp started to have open wounds on it. Nats would even try to fly in my hair if I was outside. Because I had like open wounds and it had gotten so bad that it was draining pus and it would bleed. I had to wear hats on my head to cover up the fact that my hair was sticking to my scalp and I could not even comb my hair. I then started getting rashes all over my body anywhere that would sweat would turn into a rash. At first I thought that it was me getting overheated by being outside in the sun. Then I even thought I was allergic to my own sweat because nothing else made sense. In the middle of 2019 the bumps had reappeared all over my body. I also had this weird thing that happened to my ear. The whole middle part of my ear was raw and scaly. I went to the doctor and they said that it was eczema. Towards the end of 2019 my hair started falling out again but this time I had giant patches of hair that was missing.

In The beginning of 2020 I had the butterfly rash on my face that just never really went away for months. My scalp never got better it got worse but this time it was different. It was the worst it had ever been. During the day my whole scalp turned white and it was very flaky. And at night or overnight my scalp would drain so when I would wake up in the morning my whole pillow would just be soaking wet. I would try to sleep with hats or bonnet on to try to keep some of it from getting out. But it did not work. I continued wearing hats throughout this year as well. I thought that this was it. This was the worse and nothing literally nothing could top it. I had thought that out of all these years it never got this bad. I thought that the death of my father made all of this happen.

At this point I had enough. But then towards the end of 2021 my scalp got better and my hair started to grow. I was extremely happy. I got my hair done and everything. I was at my all time high. And then towards the middle of 2021 my legs started swelling really really really bad. I had got this real bad sore that appeared on my leg. It started out as a teeny tiny scratch. That’s what I thought at first. Then I thought that it was some kind of bite or something. And as the days went by that scratch turned into a giant open hole in my leg. I also could not walk at all. When my leg turned black I ended up going to the hospital and they told me that it was a staf infection. Because I could not put any weight on my leg at all I had to use a knee scooter to get around. I could not walk for months .

Shuffled around by doctors

As soon as I started walking good the end of 2021 my hair started to fall out all over again. Now we get to the year I was diagnosed. In February of 2022, I was having issues with my hands turing colors. I had numbness in my hands to where I couldn’t feel anything. I couldn’t open stuff and my hands would give out on me. I went to the doctor and he said that it was an allergic reaction. To cleaning supplies. In March I then got sick and they said it was the flu. Gave me meds and everything. I then had issues with my stomach in April went to a different doctor and they said that I was constipated. Once again gave me meds. My other symptoms never went away but the doctor said that they were not related to each other.

In May it was hard to eat. I ate like a 3 year old. I would eat once a day. And so I went back to the doctor and they said again constipated. At this time we knew it was something else. I lost about 48 lbs since the last time I was at the hospital. It wasn’t even a month. We knew something was seriously wrong. I then had to ask my primary doctor to run a whole bunch of blood tests not just the simple blood test. Everything was coming back red but again they were telling me I was fine.

"There's no way that this is Lupus..."

In June I was so bad I couldn’t do anything. I’m surprised I managed to finish out the school year. I had to request to go to a rheumatologist because my doctor didn’t even want to send me there because apparently I was fine. I was told I had to wait 3 months to be seen by the rheumatologist. When I went to another doctor my mother even asked if this was Lupus and if I was having kidney problems. My mother had did research on it because I was just getting sicker and sicker.

We were told there was no way that this was Lupus and we were also told there was nothing wrong with my kidneys. Keep in mind I had protein in my pee. But this doctor told us to stop doing research on our own and freaking ourselves out. And so in July I was having issues with my chest During this week I still wanted to celebrate my 30th bday in Vegas. The meds I was on make me feel a whole lot better. I wasn’t good but I enjoyed my bday. But being there especially in the hot sun, I then got worse. I went back to the doctor a week and a half later. I then was having issues with my legs and not being able to walk. My chest was hurting and I couldn’t breathe. I went to the doctor they said that I had walking pneumonia. Because I had fluid in one lung. They gave me meds for a week.

During this week I went back to work to set up my classroom for the upcoming school year. The meds made me feel better but not great. I was able to drink a lot of stuff and eat certain foods while I was on the meds. I had finished my meds the first week in august and I was having so much pain in my legs. I went back to the doctor. They said I was good that I maybe had overused my muscles. Not even a week later. I was throwing up and having diarrhea none stop. And my whole body shut down. I kelp falling out of consciousness.

All my tests came back "perfectly fine"

I was at my brothers house during this time and he had to carry me to the car. He took me to the hospital and because I was so bad and I looked so bad they brought a wheelchair out to me and took me straight to the back. while I was there they gave me IV fluids. They gave me three bags when my body started to finally do better. After they gave me the fluids they wanted to discharge me because all my test came back that I was perfectly fine. But at this time when they had already done the paperwork to release me. I was kicked out the room and everything so at this time I was in the hallway on the bed and somebody else was already in the room that I was just in. In the hallway I was having real bad pain in my side. The pain was so unbearable that my mother had to tell the doctors to do additional testing. She told them to give me a scan. The hospital did not want to give the scan because they were saying that I was good and could go home I was being discharged. My mother was not taking no for an answer and so the hospital finally did the extra testing.

They said that I had fluid in both of my lungs. I also had fluid in my stomach and in my legs. One of the head people at the hospital came to personally talk to me and my mother about officially admitting me into the hospital because the scans look so bad. So this was when I was admitted to the hospital the first time. They ended up draining a liter and a half of fluid just from my stomach alone. I stayed there for 8 days because they didn’t know what was wrong. They ran all these test and was like there’s something here.

A revolving door to the hospital and back

So, long story short the hospital gave me IVs and stuff and sent me home. I was home for literally 4 days and was back at the hospital. I was at the hospital close to where I stay because during that four days I had went home. At this hospital visit I was worse off then the first time. I was at the hospital. This time I was throwing up bowel movement none stop. So, at this point it was like death was knocking.

This time the hospital listened to me listened to me! I think it was mainly because I was just at the hospital and they had all of my stuff. A rheumatologist doctor came to the hospital and saw me and gave me my unofficial diagnosis of lupus while we was at that hospital visit and he also started me on lupus medication. This was unofficial because he had done research on his on and didn’t have that much to back him up. He wasn’t even my doctor but he was invested. I had met him my first hospital visit and when he heard I was back at the hospital he traveled to come see me.

They then released me from the 2nd hospital so that I can get a official diagnostic. They did not want to release me because they knew I was going to get worse because I wasn’t good. But my insurance would not pay for me to still be a patient at the hospital and get transported to see the rheumatologist doctor. So they had to officially release me. But what they said was right because I was back at the hospital a few days later. But I was at the hospital that deals with lupus patients.

Finally getting real answers

I was given this hospital name Theodore my second hospital visit. So this time was my best hospital stay because I was able to tell them what was wrong with me and what my diagnosis was and I had people from many different groups help me this is when they told me I had Lupus Nephritis which is my kidneys. It was so bad I got my first round of chemo. I started feeling a whole lot better. I started to actually be able to eat food. My only issue was that I was paralyzed. There’s so much more to this story I made a video of my first year of being diagnosed with lupus. Let me know if you would like to see the video I am currently working on year two of being diagnosed with lupus.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Lupus.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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