2019 Walk to End Lupus Now, DFW

Rage Against the Lu

First and foremost, THANK YOU, thank you for the time you have taken to come visit the page and a sincere THANK YOU if you should choose to donate towards this cause and a raging THANK YOU if you should choose to walk with me!

Lupus changed my life in 2014 at the age of 32. Since lupus is the great imitator, it was there long before, it had just been misdiagnosed.

I was seeing over seven different doctors for many different ailments with no relief/reason and no one suggesting that they were all related.

A CT scan was ordered and exposed an enlarged heart and lymphnode, after much testing no conclusion came of it, but I was sent to an oncologist for biopsies. Thankfully, all were negative. Mind you, none of my symptoms ever subsided as I was going through this process, so the oncologist continued to see me and I continued to deteriorate. He was compassionate enough to my pain that it prompted him to make a personal call to a dear friend who happened to be a rheumatologist.

In my first visit, he was very thorough with his questions, a shocking and welcomed surprise, it turned out I had 8 of the 9 criteria for lupus. He was convinced, but we needed a full panel of testing to be certain. This consisted of me giving 16 valves of blood. The record to-date has not been beaten! Before the official blood work and test results came in to confirm his assumption, my body completely went into a severe flare. The next thing I knew, I was in the hospital fighting for my life. Before he arrived, the hospital had not found anything wrong, so their focus was just to stabilize me.

Dr. Wonderful arrived with results in hand and I learned my diagnosis and that no cure was known and the battle I was about to face would be lifelong. I was devastated. Since then, I survived multiple surgeries, continue my treatments and hope.

I live in constant fear of the unknown. Not knowing when it will strike. Not knowing if my symptoms will worsen. Not knowing where it even stems from. This year, I was also diagnosed with Sjogren's. I hope that one day these things will be known.

Chronic diseases are isolating, depressing and frustrating. I find the strength to continue for my loved ones, I push through for my children, I speak up so others won’t ever have to face this fear, to find an answer. I am thankful for the handful of people in my life that refuses to let me fall and stand with me tall.


Instagram: @linkupforlupus
Facebook: Lupus Rebel

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.
  • Only one drug has ever been developed and approved specifically to treat the disease.
  • Autoimmune diseases are the eighth leading cause of death among women, shortening the average patient's lifespan by 8-15 years.
  • The average patient with autoimmune disease sees six doctors before attaining a correct diagnosis.

Living with lupus is like living with a ticking time bomb, you never know when it will hit and alot is internal so as long as I can wear a smile no one really knows how much it hurts. Sometimes it feels like I have been through it all, between the multiple surgeries and hospital stays and the monthly infusions, but the fact is this is lifelong. It is a constant battle, some days are tougher than others, but it has taught me a new meaning of being resilient, one that requires immense patience and acceptance of support from others.

After being touched personally, it seems as though the questions are never ending and you soon realize many are unanswered, we need the research, clinical trials, advocacy, like any other chronic disease the list goes on. I have heard other patients, much worse than me, and I tell myself it could be worse, but I don't want less worse, I want to reach as many people as possible to raise awareness and get us the research needed to find more answers.

I reach out to you all with an open heart to help me take an active role in awareness and research of lupus.

With your support and love, lupus may be my nemesis, but we can conquer this!

- Tinamarie


View More
View More