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May is lupus awareness month. This is the month we lupus warriors strive to educate, inundate, and promote awareness about lupus. Lupus is an autoimmune illness that can affect all body organs. It is an inflammatory disease that can have periods of remission and exacerbation. It is often called an” invisible disability” because most times, to the untrained eye, a person with lupus can appear as if "everything is fine.” Lupus warriors know that “everything” is not fine. Internally, the body is self-attacking its organs because, with lupus, it cannot discern its own organs from foreign invaders such as viruses, bacteria, fungi, and any other foreign invaders
Thus, the immune system is overactive. Typical signs and symptoms can be a rash across the face/nose, pain, fevers, fatigue, joint swelling, hair loss, chest pain, shortness of breath, and muscle pain/weakness. Not all symptoms will appear in everyone, and lupus can look different in individuals who have it. There is no one-size-fits-all with lupus, but what is common is for people with lupus also to have other overlapping autoimmune diseases like Raynaud’s, rheumatoid arthritis, Sjogren's, scleroderma, myositis, and autoimmune thyroid disease. The accurate diagnosis of lupus is typically after several misdiagnoses and several medical providers. Lupus mimics other diseases and is often hard to diagnose. Lupus Awareness is every day for people with lupus, but educating on signs and symptoms may help someone else question whether they have it or not. There is no cure for this devastating, life-altering disease, but treatment options exist.
Statistically, lupus affects more women than men. About 90% of those with lupus are women, and from that number, the majority are women of color. The other 10 % of those diagnosed with lupus are men. Unfortunately, men with lupus often have more complicated and severe disease progression involving the kidneys or heart, sometimes both.
THREE WOMEN WITH LUPUS
My lupus diagnosis came in 2011. I had been misdiagnosed with bronchitis for years, but the hidden truth was lupus was attacking my airways. Lungs, muscles, skin, and scalp/hair are the main areas of involvement with my lupus. There are times when I am incapacitated, unable to walk long distances, or due to poor exertion my lungs are inflamed. Lupus is very unpredictable, and I try my best to avoid triggers that I know will aggravate my lupus. Some triggers can range from getting too much sun to not getting enough rest to being exposed to stress, allergens, and common viruses like colds or flu. I am, however, lucky to have been able to remain in my profession of nursing. But being immunocompromised from medications people with lupus take to calm down the overactive immune system, I have had to change the type of nursing that I can safely do.
Two of my fellow lupus warriors and business partners, LaVita Williams and Tamiko Ralson, have also been living with lupus for years. LaVita was officially diagnosed with lupus in December 2009. Her lupus progressively got worse and totally disabled her in 2010. She, unfortunately, lost her job due to frequent hospitalizations and lupus-related complications. As a result, the income lost from her ability to work changed her social and financial dynamics. After about 10 years of being out of the workforce, Lavita’s lupus has stabilized, and she has been able to return to school. She is currently pursuing a master’s degree in healthcare administration. To cope with her depression and isolation initiated by her lupus, she adopted a child and eventually was able to turn her passion of providing care to starting a home daycare business. Lavita is another great example of the lupus warriors within our communities, not allowing her disability stop her from achieving her dreams.
My other Lupus ally, business partner and, of course, warrior is Tamiko Ralson, who is a nurse by profession. She was diagnosed with systemic lupus in 2016 at 40, at the height of her nursing career. She had, however, been living with the symptoms of lupus since the early 90’s. In her teen years, she had encouraged providers to screen her for lupus at least 10 years before my own diagnosis. She had also seen family members suffer from symptoms of lupus and wanted to ensure that she had been screened for having unexplained pain symptoms. Tamiko has experienced days where she may not always feel fine. However, if her energy supply is low and she knows she may go into a flare up at any time, it can often be hard to plan and can impact her work, family and social life. There are days she may have to stay in bed until her arms move, as they can feel like a ton of bricks to lift at times. But nevertheless, Tamiko continues to find ways to thrive and lead with her invisible disability.
Leading with our disability made us focus more on the why. Why do this now? Are we doing this for the right reasons? Some key facts helped us answer our “why.” Fact number one, lupus disproportionately affects women of color. Fact number two, lupus can affect not only physical, mental, and social health, but also financial health. Sometimes you can work, sometimes you can’t. Some are totally disabled from lupus, while others have intermittent disability. Being in healthcare, the third fact is simply a health disparity exists with lupus. Health disparity gaps can start closing with health literacy and financial equity. Simply put, education and increasing financial resources can put us in better positions for access to care, healthcare choices, and options. Being one lupus flare away from being unable to meet financial obligations is very real for most people with lupus. These reasons lead us to the “right now.” Time does not wait for anyone or situations. Lupus is an unpredictable disease, so we may as well go for it now. We can’t sit around and wait for a better time, there is no better time.
WIFFI (Women Investing for Financial Independence)
WIFFI’s model is set up as an equal partnership LLC, meaning we are all owners, and we are all pooling in our unique talents and passions as a team to work towards our business goals. We also brought in a fourth partner, Bianca Franco, who does not have lupus. While she does not have lupus, she is a huge supporter within the lupus community, as her mother-in-law has lupus. With her added knowledge of ordering materials for the rehab project, landscaping and experience assisting with credit building for the business, we developed our own dream business team.
WIFFI was conceived in May/June of 2023. By August 2023, we were incorporated and set up legally. By Oct 28th, 2023, we were closing on our first property. Rehabbing the property was very fast starting mid-November 2023 and completing the work in April 2024. Currently, the property is listed on the market. We have made an offer that was accepted on our second rehab. We closed on that property on April 26, 2024. The experience has taught us a lot about working as a team, putting personal issues aside, and focusing on the business aspect. We have learned that we are much more than lupus; most importantly, we are creating financial resources for ourselves and our families.
We’re also accomplishing generational wealth–building tools while simultaneously making strides to decrease health and wealth equity gaps for ourselves and people in the disability and lupus communities.
By leading with my disability, I am helping my fellow lupus warriors know that “we are more than lupus. But also, that we bear some responsibility in changing the narrative, distribution and accumulation of power within our communities. ”
Below are photos of a rehab project by WIFFI:
To learn more about Lupus Awareness Month, please visit any of the following websites:
- https://worldlupusday.org/
- https://cms.illinois.gov/benefits/stateemployee/bewell/awarenessmatters/may-is-lupus-awareness-month.html#:~:text=Lupus%20is%20a%20lifelong%20disease,with%20the%20challenges%20of%20lupus.
- https://www.lupus.org/lupus-awareness-month
- https://www.cdc.gov/lupus/features/lupus-awareness/index.htm