14 years ago this past January many of my questions were answered and yet so many new questions came about, it was the day I was diagnosed with Lupus.
Hearing the life-changing words of a diagnosis is never something you can truly prepare for, as a matter of fact for a small moment in time I was actually happy to have it, a diagnosis that is. You mean I am not crazy? The years spent in pain, extreme fatigue, hair loss, and other "fantastic" things are from a real cause? That's great news... wait what, great news?!
The relief that there is actually something medically wrong only lasts a VERY short time and then it turns into, what the heck is Lupus and what's the cure? What do you mean Dr. there is no cure? Ok, then what is the treatment to help manage my Lupus symptoms? What?! Shut the front door, there are no Lupus specific treatments? I have to take a cocktail of meds that are used for other diseases and hope that helps!?!
Fast forward to when I had enough of "managing my symptoms" by borrowing drugs from other diseases and signed up for a 3-year trial of a new experimental drug that if approved would actually be for Lupus patients on purpose!! Sign me up!! Ok, so now I am signed up and as I get my first infusion I think, wait, what am I putting into my veins, will I turn into Stitch?? Was I, am I scared, ok yes a little (shhh don't tell anyone that, it is not something a strong person like me is supposed to admit) but if I can help us Lupies get a better drug then I'll do it! It is not a cure but it is a step in the right direction. Unfortunately, the study drug was not approved so back to the drawing board but I am still glad I participated.
I am in pain everyday, I have just learned how to manage it (most days). I need to keep reminding myself to breathe, rest, and restore whenever possible as my body needs it more than most, stress and lack of sleep are my biggest triggers. I train with a personal trainer, I am eating better and my goal is to keep fighting this invisible and cruel disease until the end.
Thank you so much for reading my story and learning a little bit more about Lupus and how it affects me personally. It is different for each person but it is all a daily struggle for us all regardless of how it manifests.
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.
Lupus is hard to diagnose, but the Lupus Foundation of America is working to make life easier and more comfortable for the estimated 1.5 million people living with lupus in the United States. Together, we can solve the cruel mystery of lupus. Thank you for your generosity!