May is known as “Lupus Awareness Month” and as we enter the last week of the month, I’ve decided to celebrate by sharing with y'all the fact that I have Lupus. 

💜💜💜

What is Lupus? - Ummm, that’s a good question. I’m still trying to figure that out myself. 

But from what I understand, Lupus is a chronic (long-term) disease that can cause inflammation and pain in different parts of your body. It’s an autoimmune disease, which means that your immune system — the system that usually fights infections — attacks healthy tissue instead. The disease and treatment for the disease can cause a variety of issues, it also has many different forms - my specific form is called Lupus Nephritis. Nephritis meaning inflammation of the kidneys. Fortunately it’s a condition that is treatable and manageable, but treatment can cause it’s own array of complications. 

💜💜💜

Not many know this but I’ve been living with Lupus for the past 14 years. Diagnosed way back in 2005 on Mother’s Day, after dealing with renal failure at 10 yrs old. 

After intense treatment with daily medication, frequent trips to the hospital, and a few sessions of dialysis, my mother and my doctors were able to get me into a state of remission at 16. For the next 6 years I was free to go to college, learn to live in NY on my own, travel & work as an actor. These past few years have been the best years of my life and have shaped who I am today, I’m constantly reflecting on how lucky I’ve been. 

*****

Honestly, I kinda thought I just didn't have it any more, but that’s not how chronic diseases work. In August 2019, I was diagnosed with Stage 2 Kidney Disease - a complication of my Lupus and a sign that it was active once again. My nephrologist’s technical term for it is “Collapsing Glomerulopathy.” The past year I’ve been working with my doctors on a few different options for treatment, while also trying to deal with the side effects that have come with treatment. But lately it’s felt like we put out one fire by causing another. 

So in hopes of putting out all the fires, as of March 2020, I’ve started bi-weekly chemotherapy sessions to suppress my immune system and help my kidneys heal from the damage they’ve endured. It’s a 12 week process, so I’m near the end of the tunnel, but the side effects of this therapy have not been great. Lately I’ve been dealing with issues ranging from physical changes and fatigue, to pain and difficulty just moving. But like I said, we are nearing the end of this tunnel and shall see what light comes of it. 

*****

I’m fortunate to say though, in all this, the support system of friends and family I have constantly remind me I am loved and that I have shoulders to lean on if and when needed. I am grateful to have that reminder and to have these people in my life right now. 

💜💜💜

I know to some extent we’re all going through it right now, we’re in the middle of a worldwide pandemic - but I thought it was important I shed some light on this side of my life since not many people know what’s going on. Not many know or talk about the challenges our friends and family are facing on the day to day. I make this post to celebrate Lupus warriors in this month of May who know what it is to deal with this weird invisible disease; to share with y’all what I’m going through; but also to give space for others to share what they’re going through too. Apparently I’ve not been too good at that, so I’m trying to work on it. 

If chemo and this pandemic has taught me anything, it’s that we are all trying to find the best way to move through this world and that none of us really know how to do that, and we are all stumbling along the way -  and it's ok to talk about it & to ask for help. 

That being the case, if y’all have any questions or concerns about this journey I’ve been on, feel free to hit me up!