In our lupus series, The Narrative Matters wants to bring more awareness to the autoimmune disease. Lupus affects many people all around the world, and according to the Lupus Foundation of America, it affects approximately 1 in 250 Black women. Lupus can damage different areas of the body, and the symptoms can differ from person to person.
Sherry Williams, a woman from Raymore, Missouri, was diagnosed with lupus in October 1999. She vividly recounted her journey with the autoimmune disease and shared great insight that can help those who are also battling the disease.
Read Sherry’s incredible story below.
I was diagnosed shortly after a dental procedure. I had Bell’s Palsy that would not go away after a few weeks. I then started experiencing flu-like symptoms. I would wake up feeling fine. By 12:00 in the afternoon, I had chills and low-grade fevers.
When I went to my PCP and explained my symptoms to her she gave me a full blood work up and found out that my levels were off. She asked me if anyone had ever told me I had lupus. I had never heard of the disease. She put me on steroids (prednisone) which masked some of the symptoms.
I started the medication and immediately started overthinking. I gave myself 3-6 months to live. I started worrying about who would take care of my kids and what I was going to do. Once I started my research on lupus, I realized I wasn’t dying of leukemia. Yep! I confused lupus with leukemia.
I was then referred to a rheumatologist and have been seeing one ever since 1999.
It was under control for years until 2008. I started college, for the first time, at the age of 42. While working and attending classes, I went through something traumatic and after a while, I started experiencing brown flashers in my eyes.
At the time, I thought something was in my eyes and would constantly rub them. I sat in front of a computer most of the day and that is the only time I would see them. At first, I thought something was wrong with my monitor/screen. I would clean it and ask others if they saw brown specks on the monitor. Of course, they said no.
In late 2009, I was on medical leave which turned into resigning from my position because it had attacked my brain. I would get migraines and was out on medication that messed with my cognitive skills.
The medication caused a long-term effect on my memory and speech. For a long time, I knew what I wanted to say but couldn’t remember as I was speaking. It was very frustrating. Some people thought it was funny and said it was due to old age. Yes, this bothered me.
To this day, I do not like speaking in front of a crowd and I still must think about what I am going to say before and while speaking. I feel that the stress and trauma from the situation caused the flare, and it attacked the brain.
After graduation, in December 2013, I started looking for a job and started back in the workforce on January 4, 2014. I have been working ever since. However, in 2018, I went through another attack.
For the longest, while walking, I noticed it was difficult for me to breathe while talking, at the same time. I went to the doctor and was told it could be allergies, asthma, etc. I was on an inhaler, which helped. After a while, I noticed it had gotten worse. I went back to see my PCP and she ordered a chest x-ray. The x-ray showed that I had pneumonia in both lungs.
I ended up using 3 different inhalers, they tested me for allergies and was seen by an ENT for chronic drainage. This lasted for a couple of years. I felt better while I was taking prednisone but noticed the symptoms would return with a vengeance if I started weaning off or not taking them at all.
After seeing a pulmonologist, I was told that I had Sarcoidosis. Here is another chronic illness that I feel was brought on by my immune system being compromised.
At the end of May 2020, I rushed to the hospital because I could barely breathe. I felt faint, weak, and could not talk while walking. During this time, I was coughing up thick mucus as well. It was during the pandemic.
They immediately took me back to a room and treated me as if I had Covid. My oxygen level was 78 and my blood pressure was 200 over 100 and something. The test came back negative. They stopped coming into the room fully suited and booted when they had to take my vitals or talk to me.
After several x-rays and an MRI they did not know what was wrong. They kept me hooked up to the IV, gave me steroids and other medicine to bring my blood pressure down. The doctor on duty told me they would put me in ICU and have a pulmonologist to see me the next day.
I asked to be transferred to the hospital where my pulmonologist worked. I will not make the story longer than it already is, but I was hospitalized for a week.
This was during the George Floyd event. All I could say was, I know how it feels to breathe and they took it from him.
Fast forward to today (8.11.21). Now, I can walk, talk, laugh, cough, and breath without an oxygen machine. I am not 100% better but 90% from where I was.
I am currently getting infusions every 4 months and on blood pressure medicine (in addition to the other medication that I had been taking for my condition), which I hadn’t been on prior to the lung disease.
I used to facilitate the Lupus Support Group between 2006 and 2016. I enjoyed it tremendously. I met a lot of wonderful people and am still in touch with some of them today.
I can honestly say that I could not relate to most of them, back then because my condition was mild.
I was on medication that stabilized my symptoms. It was until I felt I was in remission, and I weaned myself off a lot of the medication.
The advice I would give others is to find a good doctor who listens and shows compassion. If you are not comfortable with them, please do not feel obligated to stay. This is your body, health, and life.
Find someone who you are comfortable talking to. Don’t ever feel as if you are bothering your doctor if you have questions or issues. That is why they are in the profession they are in.
Lastly, if you are under the care of a good doctor, they will treat you properly and they know what helps. DO NOT wean yourself off medication unless you talk to them first.
I learned the hard way and feel that I may not have suffered so much had I continued the medicine I was taking. Now, I am taking more than before. Sometimes, we learn the hard way.
Sherry’s story is nothing short of remarkable. Each day she puts her best foot forward as she battles lupus. Sherry will continue to be a beacon of hope to everyone she encounters on her journey, and The Narrative Matters is so appreciative that she shared such a significant part of her life with us.