During a trip to Europe in 2004 with my parents, I started to experience some fatigue. I just chalked it up to the time difference between California and Europe. I also noticed my fingers would turn white, then dark blue, then bright red. After returning home, the fatigue became worse over time, to the point where I would get home from work, lay on the couch, and not have the energy to lift my arms. I also came down with another case of pericarditis. I knew something was not right. I went to my longtime primary care physician (PCP), who had been my doctor since I was 4 years old, when he stitched up my chin.
The following Monday morning, while getting ready for work, I could feel my heart racing and beating irregularly. I was not concerned, as this had happened before and had always resolved after a few minutes. But on my way to work, I noticed it was not improving. After arriving at work, I sat at my desk, just not feeling well. A co-worker and close friend, Leslie, came over to talk and said I didn’t look well. She quickly grabbed another co-worker, who worked a second job at a hospital, and they decided to activate the company’s ERT, emergency response team. After taking my blood pressure and getting my heart rate, which was over 200 beats per minute, the ERT called 911, and had me transported to the hospital.
After arriving at the hospital, everything became a blur. I honestly don’t remember who called my younger sister, Carol, to let her know what was happening, but she showed up at the E/R, followed shortly after by my other siblings. My siblings rarely left me alone in the hospital. They were there as often as they were allowed. After spending a few days in a regular unit, I was transferred to the ICU, because they could not get my heart to a normal rate or rhythm. In ICU, my condition rapidly worsened. I became lethargic, lost my appetite, had difficulty concentrating, and became weaker. I was diagnosed with clostridioides difficile, or c-diff, a bacterial infection that causes diarrhea and colitis. This caused my condition to get worse.
I had a team of doctors from multiple specialties working on my case; cardiologists, cardiac rhythm specialists, neurologist, infectious disease specialist, rheumatologists, pulmonologists, hematologists, you name it, they were working my case. I was being tested for everything; Dengue fever, Lyme disease, HIV, malaria, STDs, West Nile virus, anything my team of doctors could think of. But everything kept coming back negative. At one point, the infectious disease specialist told my family, “She’s dying and we don’t know why.” While in the hospital, I suffered a grand mal seizure. I was rushed to the MRI lab for multiple brain scans. The next day, while in the CT scan unit, I suffered another grand mal seizure. Again, I was off to the MRI lab. Later that day, I suffered a stroke. Luckily, Good Samaritan hospital was one of the first certified stroke centers in the US, and the Stroke Response Team was at my bedside in minutes. More MRIs, more CT scans, and more tests. I don’t remember any of this. I only remember going over some verbal exercises with my nurses. The neurologist later explained that my stroke was caused by lupus cerebritis, inflammation in the brain specific to lupus.
After a week, most of which I do not remember, I was finally transferred to a regular room. The rheumatologist came to my room, and let me know they finally had a diagnosis; lupus, or more specifically, systemic lupus erythematosus (SLE). My PCP had been right. Now what? I left the hospital after nearly three weeks, and went home with a plethora of prescriptions and no idea what I was dealing with. I did a little research online, but stopped when I read, “can be fatal.” I was only 41; I wasn’t ready to die. My first appointment with a rheumatologist outside the hospital didn’t improve my understanding of lupus, or my fears. The doctor walked out of the exam room as I was trying to ask questions. I was floored. I had never been dismissed by a doctor before. The next appointment didn’t go any better. He was rude, abrasive and condescending. He cut me off when I tried to ask questions about complementary treatments, and told me “You just need to do what I tell you to do.” I called my PCP, in tears, explaining what happened. I was referred to another rheumatologist shortly after.
Before my appointment with my new rheumatologist, I was still upset, scared, and unsure what I was facing, so my sister Carol started searching the internet for information on lupus. She came across the Lupus Foundation of Northern California and saw they had an upcoming conference in San Francisco. That first conference changed my outlook. The doctors and researchers presented valuable information that outlined what SLE is, the available treatments, the need to treat each patient based on that person’s specific symptoms and needs, and that lupus is manageable, and we can live with it.
After that first seminar, Carol was very impressed with the LFNC and their mission. She received the LFNC newsletter, and read that the organization was looking for Board of Directors members. She then contacted Jo Dewhirst. Carol joined the LFNC Board of Directors in 2006, and has held several positions since; secretary, Vice-Chair, Chair, and member at large. Her commitment to the organization is an extension of her support of me and my lupus journey, and her desire to bring greater awareness of lupus to our local communities, as well as promoting the need for research and education. I am so lucky to have her in my corner, and so proud of her commitment to the lupus community. Although I have had struggles with lupus, ending up in the hospital with a second major flare several years ago, my lupus is well managed and I am able to live a fairly normal life. I can still work in my garden, although not as long as I used to, and enjoy the sanctuary that it is. I actually enjoy playing with dirt. One of the hardest lessons I had to learn was that it’s okay to ask for help. I can’t do it all, and sometimes I need help. I also learned that I need to take care of myself. That it’s okay to put myself first, when I need to.
I would not have survived my two flares, or this lupus journey, without the support of my family and my closest friends. They are my rocks. They have been there every step of the way, along this difficult path. I love them and treasure them. If I could give other lupus patients any advice, I would say, be part of your medical team, know that you have the right to ask questions, and have those questions answered. And ask for help when you need it.
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