living with scleroderma: appreciating the ‘moments in between’ to find strength
silvia petrozza often feels like a phoenix rising from the ashes every time her disease knocks her down and she's works to crawl back out from under its hold
6 minute read
silvia petrozza copes with scleroderma by appreciating the moments in between bouts of pain and uncertainty.
silvia petrozza
when silvia petrozza was 24, she was just starting to make her life dreams come true. as a young woman, she had dreams of building something for herself, similar to her sister, who owned a restaurant at the time.
then, she started experiencing kidney infections, rashes, and skin colour changes on her hands. as the symptoms progressed, one of silvia’s older sisters, whom she lovingly calls “the google doctor,” pushed her to get checked for lupus, because in her research, all signs pointed in that direction.
“i went to the doctor and he was refusing to do it,” she said. “he’s like, ‘i don’t think you have lupus.’”
through persistence, silvia’s doctor finally agreed to do blood work to investigate her symptoms further, and she was diagnosed with systemic scleroderma. at first, she didn’t think much of it and was more focused on dealing with the pain that arose because of her condition and the anxiety and lack of sleep that came along with it. she was a new mom and didn’t want to deal with the big diagnosis yet. she just wanted relief.
after digging further into her disease and seeing how rare and how harsh it could really get, her young mind “was in denial” until she had to go through treatment for a digital ulcer.
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“it’s such a crazy situation where you think it’s just something on your finger that can have such a huge impact on your wellbeing, your quality of life,” she said.
from there, silvia had to learn a new normal to deal with her scleroderma diagnosis, a normal she still has to tweak as necessary today.
living with uncertainty and chronic pain
since scleroderma is a rare disease, her experience with healthcare professionals was mind-blowing. she spent a lot of time going through the motions with providers who didn’t “know what they’re doing at all because they’ve never heard of it and you’re new to it.”
the pain was a significant source of anguish for siliva, and it’s something that, unless people experience it firsthand, it’s hard to imagine what it truly feels like.
“you’re always in pain, just the levels change throughout the day to day or even throughout the day or based on your mood (or) the weather,” she said. “when you’re young, especially, and you’re a new mom and you can’t do certain things like change your kid’s diaper, it’s crazy.”
on top of her scleroderma, silvia also contends with raynaud’s, another chronic disease that affects circulation. it only added to her pain because of how it affects the nerve endings in her hands.
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she notes that every time she would get an attack, it was like her body was “self-amputating” the tips of her fingers, trying to get enough circulation.
other symptoms began progressing throughout the years, all of which reduced her quality of life significantly.
“my skin started to get tighter in my face and my chest and arms, and then esophageal issues actually started shortly after that, where i would eat certain foods, and sometimes it would even just be drinking water, and i would feel like i was choking,” she said. “and then you panic because you feel like you can’t breathe.”
silvia’s also dealt with gastrointestinal issues that led to her having a feeding tube, noting that the disease itself is so “unpredictable” that it can be hard to see what’s on the horizon.
“you don’t know what’s going to come up next, and you can do everything, you can see your doctors and do that, but you can literally wake up in the morning, oh, i have a kidney infection and then go into kidney failure,” she said. “i’ve developed anxieties and fears where i was never really like that as much as other people were.”
learning how to survive a new normal
silvia is currently a stay-at-home mom, but that wasn’t her plan for her life. she always wanted to work and be independent. but her chronic disease threw a wrench in those plans, and before she even got started, she had to try to find a new way to deal with it all while building a life she wanted to live.
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“i had other dreams,” she said, noting that those were put on hold because her new goal was to simply survive as a mom.
since she was so young, having scleroderma also changed the way she viewed her future as a mom. she wanted to have more kids, but she didn’t know what that would look like.
she mentions that she continued to plan for the future because she was still young enough to accomplish having the family she always wanted, but not in the same way she could prior to developing scleroderma.
“it’s kind of like where you still plan for the future, but you kind of reel it in and just take it day to day.”
finding empowerment and strength to live with scleroderma
for silvia, the road to where she is now hasn’t always been easy. between the beginnings of denial and detachment, to learning how to advocate for herself so that she could get the proper treatment and maintain a certain quality of life, she had to deal in a way that worked for her.
“there’s different levels of healing and there’s different processes,” she said. “and learning how not to give up and how to fight through, getting the right treatment and finding the right medical care.”
she notes that she had to find a way to empower herself to “ask the questions and not take no for an answer,” even though that could be draining at times. going through the anger, the sadness, and the symptoms that held her back from living the life she had dreamed of for herself prior to developing the chronic disease always weighed heavily at times.
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but there came a point of acceptance for silvia.
“you get to that point and then you’re always still, on some level, fighting through that, but then it’s like, okay, so this is me now. this is my life.”
once she was able to accept what her life was and the limitations she faced, silvia began to create a new path forward that helped her cope with her disease and find things that she could do for fulfillment.
she uses social media and her website to advocate for scleroderma and connect with others, is the current president of the scleroderma of canada board of directors, and has made a documentary highlighting her experiences, as well as music to share with the world.
“i’m all about finding different ways to feel,” she said. “so, there’s the medical aspect, medical team finding my treatments, but then kind of like a deeper dig into myself and natural stuff and what things can work for the day-to-day to make myself feel mentally better, more energetic, right?”
she’s currently working on getting a life coaching certificate because she wants to be able to help others find their own ways to improve their quality of life. she admits that even with all the good she’s done for herself and others, it’s not easy to stay in good spirits when new things pop up. for her it was amputations, being bedridden, and the sheer exhaustion of it all.
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still, silvia knows that even when she’s down, she won’t stay there for long.
“you get tired, and then sometimes, if there’s nothing, i feel like shit, i’m depressed, i have anxiety, i develop new things as new things pop up, and then it’s me slowly crawling out of that hole again and finding another level of finding myself again or a new version of myself,” she said. “i kind of relate it to the phoenix.”
silvia goes through the ups and downs, but one thing that she tries to maintain is gratitude and appreciation for “the moments in between.”
“going on vacation and going into an ocean that has salt water,” she said. “you have these ulcers, your body hurts, you have these sores, and little things like that. being able to jump into the ocean and feel so good about it, and not worry that the temperature is too cold or that it’s burning you. or eating a burger without choking on it. having a day where the pain is kind of at bay, where you’re able to do what normal people can do.”
“it’s about not giving up and enjoying doing things even if you have to kind of … tweak it in a way that works for you.”
world scleroderma day is june 29. to learn more, visit scleroderma canada.
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