Jayda Anastasia
Long Island, New York (United States)
JAYDA ANASTASIA
Scleroderma Stories Issue 2
Please introduce yourself
My name is Jayda, and I’m a 19-year-old girl from Long Island, NY! My dog, Mocha, means the absolute world to me, as well as my mom, Jennifer, my sister, Selin, and my boyfriend, Jacob.
I used to row back in high school, but when my symptoms got in the way, I put my energy into the gym! I really like fitness and nutrition as a whole. Health and wellness is number one for me, which is why I want to become a nurse practitioner in psychiatry when I graduate. I kayak, fish, paddle board… anything in the gym or on the water is for me! I also have an Etsy shop where I make soaps, candles, sprays, etc!
How have you had to make adjustments to how you do these things to accommodate for your scleroderma?
Sometimes, my joints hurt so bad that I have to change my workout plan, or even just take a rest day. I’ve had to reschedule hikes and let my friends go kayaking without me, but I never let it completely stop me. For example, if I couldn’t kayak, I’d still spend time outside just to get out. 50% is better than 0%, even if it’s not perfect.
When were you diagnosed, and what symptoms led to your diagnosis?
I showed symptoms when I was 3 ½, and I was diagnosed when I was just turning 5. I was sick a lot as a kid. I was in and out of the hospital a lot for body pain and breathing issues. I cried a lot about joint pain, and patches started growing on my skin.
My mom, being pregnant with my sister and tired of me being so sick with no answers from our local doctors, decided to include even more specialists located near NYC, who then ran blood work and discovered between the tests and my patches I had scleroderma.
Nobody here in Long Island thought about it because I was a little kid. I was so young, but I remember that I started to feel better after I was diagnosed. We had a plan on how to tackle this and how I could grow normally.
I was initially scared because I didn’t know what it meant, and they said there was no cure, but as I grew up, I learned more and got more comfortable with it.
Was there a certain point at which you started actively learning more about scleroderma?
It piqued my interest when I was around 10. I used to dance competitively, and eventually the pain became too much and I had to slow down, so I wanted to learn more on how to naturally help myself. Ever since then, I have steadily learned more and more! I try to teach others around me because many don’t even know what it is.
What is the hardest symptom for you to deal with?
Probably the pain. I try to manage the pain the best I can, though. I really don’t like the patches on my skin. They make me self conscious, especially the one on my back because it’s so huge!
People always ask me what it is when I’m out. It’s not physically hard, just mentally challenging – like a constant reminder.
Have you developed any other symptoms since your diagnosis?
Raynaud’s, GI issues, and migraines. The GI issues and migraines have settled down in the last year though! It’s really the joint paint that I feel the most. I take care of myself through diet and exercise to try and relieve these issues.
I’m blessed that most of my symptoms aren’t so bad! I’ve been diagnosed for over 14 years now, and I feel like I could’ve been so much worse.
What is the most difficult part of living with scleroderma?
I would have to say the “not knowing” is the worst because some days I am in serious pain, so how do I know it for sure will pass? Will I get worse as I grow older now that I’m almost an adult? Not knowing kills me! I’ve learned to wear a brace, stretch, etc. to help alleviate some of the pain, but I have no idea what to expect in the future or how to brace myself for that.
Has scleroderma affected your ability to attend school or work? Did you have any teachers or friends that understood your scleroderma?
Yes. My junior year in high school was the worst I had ever gotten that I could remember. I could barely move, I kept fainting, and I stopped eating like I was – which made me extremely anemic. I was so sick, I had to come in late, leave early, or just not show up so often. I got so lucky with my teachers because they all worked with me and knew that at the end of the day, I would get everything handed in that was necessary. Still finished the year with a 101 GPA! Just missed a lot of classes.
Work, not so much. Sometimes, I have to tell my boss I need to work a little slower, but I’ve never called out to a job in 5 years of working now.
When I was younger, my friends didn’t understand, but as we got older, they became so supportive! Especially my boyfriend and my best friend, Julianna. Even my new college friends helped me out through this pandemic and tried to protect me before we were forced off campus!
Could you elaborate on how they’ve helped you through this pandemic? Or talk about any adjustments you’ve had to make because of COVID?
Firstly, I should mention I attend St. John’s University in Queens, NY. It was one of the first epicenters in the nation at the time, and the school didn’t know what to do with us.
As soon as we returned from spring break, my friends got my food for me so I wouldn’t wait in long lines, they gave me the space I needed, they washed their hands more often to come near me. Even going to class, I was nervous. The ones in my class got my work for me so I could do things remotely, and I only went to take my exams for the week we remained there.
My family was in huge jeopardy, and we even lost my uncle (NYPD, couldn’t work from home) because of COVID. I had to make huge adjustments that were so hard for me. If you can’t tell by now, I love going out and being a go-getter. I couldn’t see my friends, I didn’t see my boyfriend, and I barely saw my family because of COVID. I did school remotely like everyone else. I was extremely stressed from all the changes and I felt them.
Now, I have no choice but to work again. I wear a mask all day. Luckily, I don’t have to touch the public much. I just constantly wash myself, and I shower immediately after every shift.
I went to one restaurant just so I could see my boyfriend after months! We used to hang out like 2-3 times a week minimum for the last four years! We even went to high school together so it was every day back then, then he graduated and went to school, so it changed to the 2-3 days. Then not seeing him or my friends for months? No gym to work on symptom management? Beaches closed?
These all hurt, but having to cover up and protect myself was the biggest change. Lots of physical, mental, and emotional changes.
Did you miss any particularly memorable moments or events because of your scleroderma?
Not really! I missed one trip to the city to see the tree and visit the cathedral, but I ended up going two days later, and it was nicer weather! I go every year anyway, but I always made it to where I needed to be!
Sometimes, I just had to take it slower. I went to MSG a lot for basketball games (huge Big East fan!), and sometimes had to plan to go earlier so I didn’t have to rush in case I didn’t feel good. I tend to plan around scleroderma so I can do what I want and I can aim for more the day of if I feel better. I learned it from a young age.
Could you speak on the medications or treatments that you’ve done for your scleroderma?
None, really. I had a few NSAIDS (nonsteroidal anti-inflammatory drugs) and over the counter pain medicine back when I was younger, but I grew tired of medications all the time. I started looking into diet guidance and fitness when I was in middle school and just started eating healthier.
People don’t realize the impact food has on your body! Now, I definitely don’t mean give up sweets because I love my cake and cookies, but making sure you get your vegetables in and focusing on stuff that’ll make you feel better is the key.
Also, sitting idle for hours doesn’t help symptoms! So I learned to keep myself active and rest when I need to. If the pain becomes too much, I have some topical creams and over the counter stuff to take, but I try to just wear my brace on my knee (where I feel it most) and relax! I know it’s not a miracle cure, but it works for me.
What advice do you have for those with scleroderma or other chronic illnesses?
My advice for people with scleroderma and other chronic illnesses is to do your best to put yourself first! I know it seems hard, but if you don’t, you’ll lose control of your symptoms. Your mental and physical health come first always! Take the rest day, then come back better than ever.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us