Welcome to the Lupie Life: Cynthia’s Lupus Story

The Beginning of Life with Lupus

I live in Florida, the Sunshine State, where it just so happens that the sun has become my worst enemy. At the age of twenty-six, I was diagnosed with systemic lupus erythematosus (SLE). It’s been a roller coaster experience.

It remains one of the hardest things I’ve ever been through. My symptoms began around the end of October 2015, when one day I randomly woke up with a big rash on my face. I would go to work like everything was normal and everyone would ask, but I just kept saying it was allergies. Because that’s what we all thought. Allergies.

One Sunday morning I’ll never forget, I went to work like I normally would. But this time, I started feeling so bad and felt my face slowly swell up. I called my mom and sent her a picture. She said, “You have to go to the hospital.” And so I did. The first time they put me on an IV and allergy meds. After that visit, I had to see an allergist. So I went and she did a million and one painful and uncomfortable allergy tests. She told me, “You have allergies, but what you are going through right now isn’t an allergic reaction.” She suggested I see a rheumatologist. But before I could see the rheumatologist, I ended up in the hospital again because my face swelled up a second time.

My Harsh Reality

This time a nurse kept insisting it was Lupus. And that was the first time I had ever heard of this disease. After that, I finally saw the rheumatologist. They did a whole lot of tests and took lots of blood and urine. Afterwards, I also saw a dermatologist which double confirmed it by doing a skin biopsy. I had SLE. It hasn’t spread out, but I do feel a lot of fatigue and I am constantly getting the butterfly rash and just rashes in general.

The “Fun” Stuff

So all in all, I went to the hospital two times before I officially got diagnosed with SLE. After I got diagnosed, my hair started falling out and it crushed me. I was so scared and so self-conscious and it had me so emotional. I also started my treatment of Prednisone and Plaquenil. And now most recently, I started on Imuran. Scratch that, I tried it for about a week and it sent me to the hospital. I thought I was going to have a heart attack! No more Imuran for me.

The side effects have me going crazy on a daily basis. One day I’m good, the next I feel bad, but I guess that’s what happens when you’re a Lupie. The major things I’ve been struggling with lately are the weight gain and losing my hair again. I try so hard to be strong and keep my faith.

But I’m alive and I am thankful for that. Now I take medicine every day and I go to my doctor’s visits. All the while, I am still trying to get used to all the new symptoms I experience.

I suffer from minor anxiety as well as minor depression. I don’t take meds for them because I try to control those icky feelings myself. I’ve always felt that I caused myself to have lupus. In 2012, I suffered a traumatic experience where I tried to commit suicide due to feeling overwhelmed by life. I let myself fall into the deepest hole I’ve ever fallen into and I vowed to never, ever again take antidepressants.

The Recent Years

These past two years have been absolutely crazy. I’ve gone to the hospital about four times. And this lupus life has managed to change not only my life but my relationship, too. See, I’ve been with my boyfriend for seven years and I’ve been living with him for five. My diagnosis has taken a huge toll on him, too. I’ve changed so much since he met me.

It might sound ugly, but I always say that I feel like the old me died and I was reborn as the me with lupus. I find myself to still be in denial. And maybe, just maybe, one day I’ll be able to say I’m okay with this and play the card I was dealt. As of yet, I’m not completely ready. I work full time and I do everything I’d normally do. Except it’s hard for me to do little things like clean my house and do laundry. Thankfully my boyfriend helps me with it and I just hope this keeps making us stronger as a couple.

Daily Life

I deal with a lot of fatigue on a daily basis and the famous butterfly rash. One of the main things I deal with that I’m self-conscious about is I’ve gained over 40 pounds since I got diagnosed and started taking prednisone. I’ve also already experienced shingles (which was the worst pain I’ve ever experienced last year on Christmas Eve). Now I currently have a stress fracture in my right foot and am condemned to wear a boot for 6-8 weeks.

Thankful

Having lupus makes me thankful for a lot of things.

I am thankful for the internet!

I am thankful I have the support of my family and friends who help me get through the tough times.

I am thankful I came across an online support group so I can learn more about lupus and how to deal with it. It’s nice to talk to people who know exactly what you’re going through and not have to worry about being judged or looked at differently.

I honestly don’t know what I would have done if The Unchargeables didn’t exist. It has helped me so much. There’s so many great people on here who, without knowing me in person, offer lots of emotional support along with awesome advice. It’s a place where you can come together with people who completely get it and a place where you can come vent and everyone will listen.

Thank you for letting me share my story that I’ve never really opened up about before.

About the Author:

Cynthia is 28 years old and was born and raised in Miami, Florida, to parents from Nicaragua. She works full time and lives with her boyfriend. She was diagnosed with lupus (SLE) on January 22, 2016 following the appearance of  a series of red rashes on her face. Now she just tries to take it day by day, though she finds that some days are easier than others.