Feb 2, 2023
My name is Tya Broussard. I live in Nova Scotia. My journey with health struggles started back in 2009 when I was diagnosed with Raynaud’s disease. I was suffering from ulcers and some not-so-fun white or blue-coloured fingers.
My difficulties continued for many years as I started suffering from insomnia, tight skin, a slow GI tract, calcium deposits in my fingers, elbow, and forearm, and the list goes on.
In September 2016, I married my soulmate, Jeremy. This man deserves so much credit, as he is my biggest supporter and he’s always there whenever I need him. To me, this is the most important thing – to have someone who may not completely understand what’s happening but never judges me. He just listens and does his best to help in any way. He is constantly researching ways to make my life easier.
That November (just 3 months later), I was diagnosed with Diffuse Systemic Sclerosis – Scleroderma. I was then put on medication to help relieve some of my symptoms. The following June (2017), I participated in my very first “Run/Walk for Scleroderma” here in Nova Scotia. While there, I met a few others living with this disease. My world turned upside down when I shook hands with people who had lost fingers, and saw people in wheelchairs, and listened as they spoke of those who have lost the battle. I knew from that moment this disease needed more attention and help.
So, I decided I needed to raise as much money as I could.
I am very fortunate that I am still able to work a full-time job with full benefits. I know not everyone with this disease is that fortunate, so I wondered, where will they get the help they need if we are only raising very little each year? We can’t help everyone! But we need to!
This brings us to August 2017. Just 10 months after I was put on medication (and started to feel as if it was working), I was diagnosed with Diffuse Large B-Cell Lymphoma. My Scleroderma treatment was put on hold and the medication was stopped, only to encounter 3 rounds of chemotherapy and 17 hits of radiation. Don’t worry! I’ve been in remission since March 2018! So now we can go back to what I was doing before the cancer, right? Unfortunately, the answer was, “No”. Because of my cancer diagnosis, I am no longer a candidate to take any of the medications available in Canada, because there is a slight chance they would cause some type of cancer and well, we don’t wanna go down that road again. So now I have a rare disease and I am a rare case within that disease. How many of us are out there like me?
So back to the drawing board I go: how can I increase my fundraising? In May 2019, I held an online auction and raised $4140. I also painted rocks and Christmas ornaments and sold them, making over $2000. Since my remission and not being able to receive medication, I’ve needed to do anything I can to help my life be a bit easier and feel a bit better.
Fundraising helps me feel better. In March 2020, I teamed up with a local pizza place, PZZA.CO-HFX, who offered to give me 2 free large pizzas a month to do whatever I wanted to do with them. My hubby and I thought we could sell tickets for $2.00 each and do a draw every month. Well, this took off! We were able to fundraise hundreds of dollars a month. From March 2020 to June 2021, we raised over $5000 in pizza tickets alone.
My fundraising isn’t a one-woman job. I have the biggest support group of family, coworkers, and friends. Every year at the Run/Walk for Scleroderma, my team keeps getting bigger and the love keeps spreading. I always say this isn’t just my disease because these people (my support network) have taken on so much to help me and also my hubby, and we are all in this together. I don’t just have a team behind me, I have a flippin’ ARMY.
Every day is a struggle for me — from the time I get up, to the time I lay my head back on my pillow. But I told myself I wasn’t gonna let Scleroderma take over my life, so I work hard to stick with a daily routine. I go to work, no matter how I’m feeling. That way, once I’m there, my head is in the game, and it keeps me distracted (most of the time) from how I’m feeling.
My daily life consists of working an 8-hour day at Costco Wholesale, putting in an hour of exercise (weightlifting/yoga/cardio), and then heading home for the daily chores that await me. I always take 20 mins a day to stretch. For me, stretching is VERY IMPORTANT. I stretch EVERY SINGLE DAY.
The past year Yoga has taken a front seat to my life. (I personally love hot yoga) stretching in yoga poses helps me with the flexibility of my joints and my skin. “MOTION IS LOTION”. The heat is beautiful for me as I stated above, I have Raynaud’s, so it’s nice and toasty. The meditation part of yoga helps ease the mind. Scleroderma is a very stressful and frustrating disease to live with and it tries to take over your life, so being able to meditate and just forget about life for an hour is very beneficial.
Other things I do to help myself is to visit a chiropractor twice a month to be adjusted and keep things flowing as they should, and to a massage therapist once a month to receive Fascial Stretch Therapy (I highly recommend this). I also watch what I eat, and I try to get outside for vitamin D as much as I can. It’s also important for me to get 8 hours of rest (note: I didn’t say sleep) each day. I make sure my body gets the rest it needs (the sleep, whenever that happens, is a bonus). I do paraffin wax treatments on my hands in the winter — that keeps my hands moisturized and keeps the blood flowing. It feels nice and warm too, so that’s a bonus in the cold Nova Scotia winters. I do hand stretching daily as well, which so far has kept my fingers from curling too much.
With this disease comes lots of difficulties. Scleroderma is so unpredictable, and I feel it’s why people have a hard time understanding it. One day I could be laid up in bed feeling like I got hit by a bus, and the next day I could be running 5 km with a smile on my face. Because of the unpredictability, I’ve had very close people in my life get upset with me for doing what I need to do to take care of myself, which may have interfered with plans or family gatherings. This is heartbreaking and has been very hard to understand by people but the people who stick by me and try to understand what I’m dealing with, are the people for me.
I think for me the hardest part of living with this disease is other people who don’t wanna understand. I’m a person who doesn’t really ask for help, so it’s heartbreaking when you do and you can’t get the support you need because the chosen people don’t care to understand. For me, that’s the hardest part of living with scleroderma.
What I would ask of anyone who has someone living with Scleroderma in their lives, is to research the disease; get informed so you can “try” to understand us! Get involved in the fundraising, get out to the annual walk/runs (Make a Move for Scleroderma) and enjoy the family atmosphere, meet others living with the disease and hear their stories. Let’s make an invisible disease visible.