Skip to main content
Close
Providing Answers, Support and Hope in Wisconsin
This is my chapter   |   
Reset
 

Our Annual Giving Campaign has Launched!

A person wearing a purple shirt

Description automatically generated

Hi, my family and friends call me CJ.  I was 9 years young when my mom first noticed I was experiencing an unusual amount of joint and muscle pain and began to keep a journal with a detailed log of my symptoms (this ended up being vital towards getting a quick diagnosis). Six-months later I was diagnosed with lupus (SLE- Systemic Lupus Erythematosus) and started the first medication I would have to take for the rest of my life.

The next several years I spent in long stretches of remission (the absence of symptoms and disease activity) with a flare up here and there. At that time, I was told I was lucky because I had the “mild” kind of lupus that “only attacks your joints and muscles.” Lucky me! 

Fast forward to 2012.  I was about 23 years young and was experiencing a few more symptoms: weight loss, increased fatigue, chronic migraines, body hurt to the touch, and back pain. I was soon diagnosed with pernicious anemia and fibromyalgia, then began taking more medications.

By the end of 2014 I had my first hospitalization for significant swelling in both my hands, vasculitis/petechiae, and dangerously low potassium levels.

In 2015 I experienced a lot of hardship. My health was still declining, I lost my job, I found myself in an abusive toxic relationship, spent several months homeless and living out of my car, all while trying my best to finish school and hold on to my part time job. I lost my health insurance during this time as well and wasn’t able to get the proper health care I needed. My health became reflective of all this.

I had to stop working in 2016 when my organs became involved and I experienced the classic lupus butterfly rash on my face. I had my first kidney biopsy, during which I hemorrhaged due to the vasculitis and needed a blood transfusion, then spent 3 days in the hospital. The results found that the lupus had significantly progressed to Class IV Lupus Nephritis.

At this point I realized just how naive I was about this disease, and I began to understand the impact and toll it was about to take on my life.

I started taking strong anti-rejection medications, used in transplant patients, that dramatically reduced my quality of life and made it impossible for me to return to work on a full-time basis.  A second kidney biopsy a year later in October of 2017 revealed that the medications were unsuccessful, and I was told we exhausted other options and I needed to receive chemo to halt the progression of the lupus in my kidneys. A third biopsy just over a year later showed further progression of the nephritis and a second round of chemo was required.

I never imagined when this journey began that I would experience what I‘ve been through. 

The most important thing has been my support system and my relationship with my doctors.  Being your own advocate, and having the right people in your corner, can make all the difference in the world. 

The Lupus Foundation of America, Wisconsin Chapter is part of that support system for me.  Thank you for providing a platform for my voice and advocacy and for all you do to educate, support research and raise awareness.

Join us in the fight for a cure!

By supporting the LFA, Wisconsin Chapter, YOU are making a difference in the well-being of lupus warriors and their families. Every dollar donated to the LFA, Wisconsin Chapter helps to provide support for the nearly 30,000 Wisconsinites affected by lupus and ninety percent of your donation stays right here in Wisconsin

As a small non-profit, we rely on YOU to help us fulfill our mission of improving the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. We are humbled by your commitment and generosity, and for the difference you make in the lives of CJ and all people fighting this mysterious and brutal disease. 

This year, help us make an even bigger impact by giving generously this holiday season. Click on the Gift of Hope link below.

Gift of Hope
Donate to the Wisconsin Chapter