Kansas (United States)
MACY PHILLIPS
Scleroderma Stories Issue 2
Please tell us a little about yourself
My name is Macy Phillips, and I am 19 years old. I love to write (I actually have a blog), scrapbook, and journal. I live in Kansas with my boyfriend of almost three years, and I have two dogs named Chi Chi and Kane. My family and my partner are important to me.
What led to your scleroderma diagnosis?
I was diagnosed with systemic scleroderma at a very young age. I was playing outside, and my mom noticed that my fingers, lips, and toes were turning blue. My mom quickly took me to our neighbor who was a nurse, and she recommended that we should see a specialist. They diagnosed me with Raynaud’s, and I was positive for scleroderma.
When I was young, what I understood about scleroderma was that I had to be cautious of the cold, and I had a disease which would last my entire life. I believe about a year passed between my initial Raynaud’s diagnosis and the positive result for scleroderma. I was diagnosed at seven and went for testing when I was 6.
I was around 12 when a spot started to harden on my back. I started to experience joint and muscle pain, issues with my stomach, chronic fatigue, and inflammation in my limbs, and acid reflux.
How did this change your ability to interact with friends or attend school?
When I was young, I couldn’t play outside in the cold months with my peers due to my Raynaud’s. I fell behind, and many of my friends stopped talking to me. I was in pain and felt exhausted all the time, which then prevented me from attending school. I also experienced symptoms such as nausea and headaches. I had a tough time at school. Many of my teachers though I skipped and my school made it very hard for me to work.
I had a 504 plan but unfortunately none of my teachers followed it. My peers and teachers bullied me. I stopped going to school at 16 and pulled myself out with my parents permission. I have tried to go through a GED program, but I have not finished yet nor gone back since. I was recently diagnosed with pretty severe ADHD, which explains my hardships with learning new materials.
Have you been able to work?
I have only been able to work part time, but currently I cannot work at all. Working has worsened my scleroderma symptoms. I worked in retail, and I had to get a doctor note to prevent getting reprimanded for calling in sick. Some of my bosses were understanding of my limitations while others weren’t.
Has your difficulty with working or medical expenses caused any financial hardship for you or your family?
When I was first diagnosed, my mom was about $200,000 in debt because of my testing. A month after I turned 18, I had to go to the ER, and our insurance was cut off, so I was immediately $1,500 dollars in debt. Being sick is a financial burden, and coming from a low-income family, I heavily rely on state insurance. I still pay out of pocket because they won’t cover my pain medication.
Financially, I worry about being unable to afford life saving care, being unable to get medications that are essential, or being unable to afford doctors appointments for my check ups. My family hasn’t made any adjustments to prepare for potential future medical expenses. To be totally honest, we financially never have been able to do so. My boyfriend and I are moving into a new place and are looking at options of career pathways and buying a home.
How much medicine do you take, and how often do you go to the doctor’s?
At one point I was taking a lot of medications, now I only take about three medications. And I visit my specialist once or twice a year. I am currently in a remission state, but before being in a remission state, I went every three months for check ups and labs.
Was there a certain point where you started to actively learn about scleroderma?
When I was about 14 years old, I started learning more about scleroderma. I became active in the community at 16 and started joining Facebook groups designated for connecting with others with scleroderma. It helped me realize that younger adults with scleroderma seem to be a rarity and inspired me to make my own blog.
Could you please tell us a little more about your blog?
I have been blogging on and off for about 4 years. Blogging has helped me immensely. It makes me feel less alone. I blog about myself, my struggle, and accomplishments with chronic illnesses. I also like to make informational pieces for other people. For example, I wrote a blog about coping mechanisms. I have also written a blog about how to tell your job about your illness.
I’ve been working on a new blog, and it is called Living Compromised. And I will be publishing it this upcoming Sunday.
What is the hardest part of living with scleroderma?
The hardest part with living scleroderma is that it could get worse any time. My boyfriend and my dogs have helped me to get through hard times.
When I was young, my mom helped a lot. She never let me feel anything but normal. If I could not have ice cream, she didn’t. If I could not go outside, we played inside. Even If I had to wear a mask, she even wore one.
Have you ever met any other children with scleroderma?
I met with Wyatt Wright in 2015. His mom runs his Facebook page, Wyatt the Warrior. My dad did a car show and decided to dedicate the funds raised to The Scleroderma Foundation. Both of us met there with our families. Even though he is a couple years younger than me, I was able to connect with him and felt less alone.
What are your goals or dreams for the future?
My dream is to own a home within the next 3-5 years, get a stable job, try having children, and thrive. Honestly, having children is important to me, but I have a plethora of other options when it comes to having kids. I overcome these worries by reminding myself of the overwhelming support I have from my family and close friends.
Have you had to make any special adjustments due to the coronavirus?
I just try to be respectful of other people and self isolate. If I go out, I will wear a mask and wash my hands. The routine is normal to me as someone who has lived with a compromised immune system for a long time.
What advice do you have for those with scleroderma or other chronic illnesses?
My advice is to know your limits. It is okay that you cannot work like your healthy coworkers. It is okay that your house is not spotless constantly. It is okay if you cannot go to parties every weekend with your friends.
You are not a burden, and your life matters just as much as healthy people’s.
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
