This year marks 30 years since I was first diagnosed with lupus and 37 years since my first symptoms occurred. I constantly remind myself how fortunate I am to be able to keep the lupus under control. I am able to maintain a professional career and have supportive family and friends. According to the CDC only 46% of lupus patients of working age report being employed. I’ve noticed a direct correlation with my stress level and the frequency of lupus flares. One of my biggest stressor of recent years is my dad’s health. Luckily, he’s been stable this year. Maybe because things have been relatively uneventful that I’ve started to notice other things.
I recently noticed there is numbness and nerve pain running down my left thigh. My primary physician and I thought it was sciatica. However, when I went for my check up with my rheumatologist, he was concerned it could be related to lupus and gave me a thorough examination. I have forgotten that lupus can attack anywhere on my body. I’ve mainly associated lupus flares with my common symptoms such as joint pain, fever, fatigue, rash, pleuritis or shortness of breath. Luckily, my rheumatologist did not find any linkage to lupus. His concern serves as a reminder that I need to always consider whether new symptoms could be related to lupus. Lupus has such a diverse set of symptoms and each patient presents them differently. This is one of the reasons why it takes so long for lupus patients to be diagnosed.
Raynaud’s is one symptom that I still experience regularly even though I consider my lupus well managed. It is a condition where my fingers and turns blue or white due to lack of blood flow. In extreme conditions, like when I was getting certified for my diving license in Monterey Bay, my ears and lips would also turn blue. The cold temperature is often a trigger for Raynaud’s. Prolonged exposure to Raynaud’s can cut off oxygen to the affected tissues. When circulation finally returns, my extremities become red, swollen, and sometimes extremely painful…think pins and needles. My doctor had prescribed medication to help with the Raynaud’s but the medication made my fingers feel like they were constantly burning. The severity has gotten better as my health improved. Relative to the other symptoms, it is something I can work around and minimize the impact on my daily activities.
I am someone who really enjoys working with my hands. You will often find me working in the lab and my favorite activities include cooking, knitting, painting, origami, pottery, and flower arranging. These activities can be challenging to do with Raynaud’s and joint pain. It is one of the reason why I became a champion of automation and luckily I work in a department with like minds. It allowed me to work full time in the lab for 13+ plus years. However, there were things that I couldn’t work around like the need to spend extended time accessing the -80C freezer or liquid nitrogen tank. Even with freezer gloves, it only offered so much protection and relieve.
When it comes to my hobbies, the hardest activity was pottery. It was physically demanding. Working with the clay which triggered joint inflammation in my hands. Handling wet clay in the San Francisco weather made my Raynaud’s worse. The pain and numbness hindered my ability create the pieces I envisioned. I stuck with it for many years since the enjoyment outweighed the discomfort and pain.
I’ve always had a hard time regulating my body temperature. Early on when my lupus was less well controlled, I constantly felt cold. When I’m not cold, I’m sweating. Being cold also meant I had more episodes of Raynaud’s. There was a narrow temperature range where I felt most comfortable and I dealt with it by always having easy access to jackets, sweaters, blankets, and heat pads. My husband finds it funny that I have a heat pad for every room and even one for travel. Since he’s known me, I’ve burned through four heat pads.
As my girlfriends and I start to age, conversations around hot flashes, insomnia, night sweats, and brain fog become more and more prevalent. I’ve been experiencing many of these symptoms since I was diagnosed with lupus so the changes for me has not been as prevalent. I’ve definitely seen other signs that indicate I have begun the stages of menopause. I am glad my friends and I feel comfortable to openly joke and talk about this once taboo topic. This is also the first year my company is offering menopause benefits and support so we making progress.
When I was first diagnosed 30 years ago, I felt very isolated. Not many people heard of lupus. Even when I told them what I was experiencing, not many people can relate. I used to joke I’m a twenty year old with a 50 year old body. The first time I went for my hip surgery, the nurse walked in and immediately turned around and walked out. She came back and told me “I thought I walked into the wrong room. You look too young to get hip surgery.” Since I’ve been blogging about living with lupus, I’ve notice more people would open up to me about their own conditions and situations. It has been very rewarding to be able to connect with people on this personal level. Many people don’t have lupus but can experience the same symptoms.
I’ve been blogging about my journey with lupus for the past 16 years to raise awareness for lupus patients. I hope you will find lupus a worthy cause to support this year.