Walk Ambassador Mari Gonzalez

 In Story Sharing Project

2021 Virtual run, WALK, ride ambassador, Mari Gonzalez. Team captain to the Lupus Spoons- Mari’s Majestic Mariposas and support group leader for the Lupus Spoons & Lupus Spoons 2.0.

What kind of lupus do you have?

When was lupus diagnosis?
Oct. 9, 2012

How long did it take for a correct diagnosis?
About 1.5 months

How has your life changed?
My life has changed so much. Before being diagnosed I was able to work a couple jobs, come home to cook, wash clothes, or do laundry the same night. In August of 2017 I had to say “goodbye” to an amazing job I was at. I was able to help young LGBTQ & HIV+ homeless adults. It was an incredibly sad day when I walked out those doors. The pain, swelling and fatigue were not allowing me to perform and enjoy my work any longer. Not being able to work a 9a – 5p job became so depressing. I needed and wanted a lupus support group but did not have one on the north side of Chicago. So, I started one! I have been a facilitator for Lupus Spoons for 1 ½ years and now I am starting my 2nd group. It will be called Lupus Spoons 2.0.

Does anyone else in your family have lupus?
I thought I was the 1st one in my family because I never heard that anyone had it but later, I found out that I have a cousin on my mothers’ side that has been living with it for many years. A few years after I was diagnosed with lupus, I had a couple cousins; one on my mom & another one on my dad’s side diagnosed with SLE & lupus nephritis. They both reached out to me along with their immediate families and I was so blessed to be able to help them. At the time of my diagnosis, I had the internet and LSI to help me.

Do you find support from your family members with lupus?

If so, how?
My daughter & mother are always with me during my doctor visits, support groups, walks and helping bring awareness daily to their coworkers and friends. My dad is also coming around to accepting that there are pain free & painful days. My brother, his family including dogs, aunts, cousins, and amazing friends are also always on my team during my walks.

How did you first become involved in the Illinois Lupus Walk and the Virtual run Walk ride?
When I was 1st diagnosed, I found LSI. I was instantly asked to join the walk committee that existed back in 2013 because of my positive attitude and energy.

Why do you think the Illinois Lupus Walk and the Virtual run Walk ride is important?
It is SOOO important because it is the biggest fundraiser to raise monies for LSI. They also raise so much awareness when you would see so many people walking in Lincoln Park, Chicago. The monies collected go to help so many people. During the walks we also get to meet other amazing people with lupus and their family & friends.

How do you make the Illinois Lupus Walk and the Virtual run Walk ride personal?
I make the walk personal by having my family and friends walk along side with me. We wear our personally made team t-shirts proudly. I take a lot of pictures on the route so that I can always have memories. I was able to have my great friend, Reina Gold, pump up the crowd by doing Zumba before the walk/run in Chicago. Every year after our walk we either bring food for a potluck or meet at a restaurant to enjoy each other’s company, laugh, relax and we also celebrate whoever’s birthday is in that month. In our 2020 virtual walk I had our support group (Lupus Spoons) on GoToMeeting while they walked in their neighborhoods safely. We also made signs that we placed along our route on the northside of the city. All the light posts, fences and gates were all decorated with purple ribbon. We always have purple balloons to make sure people see us having fun. That always bring people asking, “what’s going on here?”

As a Team Captain, what are your goals?
As a team captain I try my best to raise as much awareness that I possibly can. I want to raise as much money as I can because I know that the money will be going to a GREAT organization. The organization not only provides great educational events so that us with lupus and our families could learn more about this incurable illness, but they also have grants for people that are in need. I was fortunately blessed to be granted a grant to help me since I am unemployed. The money also helps provide so many support groups for us all.

Has a lack of public awareness about lupus affected your quality of life?
A lack of lupus awareness has affected me by always having to explain why yesterday I felt great but today I cannot get off my bed. People not knowing about lupus causes them not to understand the unpredictability of the horrible illness. People make me feel as if I am making up my illness or symptoms since I don’t “look sick.”

How did you find the LSI?
My 1st rheumatologist told me to find LSI and ask them my questions and get the best answers. That was the best advice he gave me. At that time, in 2012, I was working in downtown Chicago. I looked up their address, called to ask if I could meet them and M.P. showed me around the office. I’ve been with them ever since.

How has the LSI helped you cope with lupus?
The staff at LSI as become my family. I have learned so much about lupus thanks to their educational events. I have so many new true friends that understand when I am up and about but also when I am down and out. LSI has also helped me in a monetary way with the grant. They also provide me with literature to help educate people that do not know about lupus but also empower us patients that live with this illness. I began my support group’s because I don’t want anyone to be alone like I was, before meeting LSI?

What would you want the world to know about lupus? Why?
I would love the world to know that lupus is not a “new” disease. The oldest evidence of someone with a lupus-like disease goes as far back as a young female mummy that died in AD 890 in Peru. Lupus is not a “women” disease. It also affects men and children. Lupus is exceedingly difficult and depressing at times to live with but for some reason I was given it. I feel that my reason was so that I can help educate and empower so many people. I also want people to know that they are not alone in this fight to find a cure. LSI provides so many support groups throughout the city and surrounding suburbs. They are here for us and our support teams. Even though we live, and many times suffer with the pain, swelling, rashes and exhaustion people with lupus along with medications can live a full life. “We have lupus, it doesn’t have us!!”

Join Mari and hundreds of others by participating in the Virtual run WALK ride for LUPUS! www.lupuswalkil.org

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