My name is Mariel Nodado, and in 2016 I was diagnosed with Lupus Nephritis. Lupus is an autoimmune disease in which the immune system is so active it starts attacking the body's own healthy cells, which can affect the body's tissues and organs. Lupus can attack any part of the body and can look different on different people. It manifests its symptoms in so many different ways making it difficult to diagnose because it can look like so many different diseases. Because of this, it takes 6 years on average for a person to be diagnosed. In the meantime, the person's immune system is actively attacking the healthy cells. And the longer it goes untreated, the more damage Lupus can cause, possibly even leading to permanent damage in the organs.
For me, Lupus was mainly attacking my kidneys, which is why they call it Lupus Nephritis. The timeline is still a little shakey as to when my Lupus actually started showing up in my body because it truly is hard to distinguish which symptoms are Lupus and which are caused by something else, something less serious. And honestly, for me, this is one of the most difficult parts about having Lupus.
My Lupus went into remission a year and a half after my diagnosis. March 2018 I was told there was no longer any evidence of active Lupus in my body. It was a glorious moment! So triumphant! I was living life more fully. I felt stronger than ever. I felt normal again, and I was so happy. But in September I started to feel a shift. Life was still good, but over the next months I felt myself growing weaker and weaker. Pushing harder every day. And as much as I didn't want to admit it, as much as I didn't want it to be so, I knew something was up. Then this past January, the infamous butterfly rash, the surest marker of active Lupus, started to show up on my face and that, along with my lab numbers, confimed I was having my first Lupus flare since my diagnosis. I'll be honest - it. broke. me.
I knew the symptoms weren't that bad, my numbers weren't terribly off base, and my doctors were monitoring me very closely. So on a rational level, I knew I was safe. But on an emotional level, I was a wreck. The hardest part about Lupus is the not knowing. Because Lupus can range from a little fatigue and light rashes to putting you in and out of a hospital for a month and completely wiping you clean of all strength, you just never know how or when Lupus is going to hit at any moment. Additionally, Lupus can look different at different times. Which means, while I was diagnosed with Lupus affecting my kidneys, at any time Lupus can switch to instead affect my liver or lungs or even brain. It won't necessarily look the same from flare to flare both in what it attacks and in severity. And so now, I'm at a point where every symptom, every sign I can pick up counts. Becasue the sooner I track it, the sooner I can treat it, which means the less damage there is to my body.
When I told my students I have Lupus, one of the questions they asked was how does it effect me in my every day life. I told them on a day to day basis, not so much. I have to take some medication; I have to stay out of the sun and wear sunblock, but for the most part it feels like I could live a normal life. But if I'm honest, Lupus has left me living everyday life in a constant state of unknown and even anxiety. That period of diagnosis, when I was in and out of the hospital, was literally the scariest time of my life. And I've lived each day since trying to avoid ever going back to that state of health. It's not easy. It requires a lot of discipline and diligence. It requires sacrifice, putting rest and good health above anything else. (Ask the people around me, I struggle GREATLY with this). And in a sense it's held me accountable to live a healthy life, but not every person striving for good health does so knowing there are severe consequences to living otherwise. More and more my doctor is making it clear to me that good health is absolutely essential because in order to properly diagnose active Lupus, we need to be able to rule out other natural affects of the body - things like headaches and hair loss caused by stress, or fatigue caused by lack of sleep or poor diet.
The hardest part of having Lupus is not knowing exactly what Lupus looks like and what causes it to become active in your body. There's just so much mystery surrounding this disease, and it can cause so much frustration and even fear. THIS is why Lupus awarness and fundraising for Lupus is so important. We need funds for research so we can shed more light on this disease. So we can have more clarity. So we can eliminate as much fear and anxiety in the hearts of all Lupus warriors. We needs the funds. We needs the research. We need the doctors. We need the advocates. We need your support! Lupus is a scary reality to live in, but having people like you, people with hearts full of love, compassion, generosity, and support makes this reality not just more bearable, but more hopeful!
Please consider making a donation and joining us on our Walk to End Lupus Now on Sunday Oct. 20 at Golden Gate Park! A generous contribution of $25 or $55 can make a definite impact. What's more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it's worth the effort! Every single dollar counts.
Thank you all for your love, support, and prayers!
Did you know?
* Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
* Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
* While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
* Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity