Joey Barlow is a 43-year-old woman from Chester County, PA. She is the proud mother of two teenage sons, Tyler, 18 and Jake, 16. This past November Joey married a long time friend, Tim, who she describes as a “wonderful, patient and loving man.” And, she has been battling systemic scleroderma since 2009.
When Joey was diagnosed with systemic scleroderma, she says, “It was a very bad experience. After seeing a local rheumatologist and going through tons of tests, he called and gave me my diagnosis and told me there was no cure, so the next advice he could give me was to take Tylenol.”
Through the extensive research she had conducted, Joey learned that the first thing she needed to do was get another doctor. “I left and went to my family doctor who originally sent me to Johns Hopkins Scleroderma Center,” she says. “After the process of gathering all my records, and being accepted as a patient of the Johns Hopkins Center, I was told that they were not in my insurance network. Back to the drawing board. I then went to Jefferson Hospital and met my current doctor who I love and respect. Without her, I truly believe I would not be here today.”
Prior to her diagnosis, Joey kept herself very busy as a single mom. She says, “I was always on the go with my kids. Friends used to tease me that I only had two speeds – super fast and asleep.” She was classroom mother for both of her children for many years and even completed her first 5k the year prior to her diagnosis.
Joey’s life has changed rather dramatically since. She used to be the executive assistant to the CEO of the Greater Brandywine YMCA until October of 2013 when, after spending almost a month in the hospital with multiple admissions, Joey and her doctor decided it was best for her to stop working and focus on her health.
“I have pulmonary fibrosis, Raynauds, Sjrogrens, masses in my brain, pretty extreme cognitive issues, gastroparesis, esophageal dismotility, frequent nausea, extreme joint pain and fatigue, blood clots and aneurysms in my hands, and the tendency to aspirate. I think that covers the main issues, but new things pop up all the time.”
She is now forced to remain home most of the time and focus on getting plenty of rest. “It has been hard for me to ask for help and accept help. I have learned that I don’t have a choice, I need to accept help when I need it. There are many days I can’t drive due to my pain meds. I have a lot of doctor appointments and tests. My kids are growing up so quickly, but I am so blessed and grateful that I am still here and can enjoy them. They are both understanding and very supportive.”
In speaking of her recent marriage to her husband Tim, Joey says, ”We had a large traditional wedding. It was wonderful. I hear stories from other people with scleroderma about their spouses not understanding them or their disease. My husband is by my side through it all. Works hard every day. When I am in the hospital he is with me every night until I fall asleep. He would do anything for me. I am so blessed.”
When I asked Joey what advice she would give someone who was recently diagnosed with scleroderma, Joey says, “Be careful what websites you use for research. I try to use the Mayo Clinic or Johns Hopkins. I know the doctors prefer us to stay off the Internet, but knowledge is power. Be your own advocate! Know your body and log info, take pictures, take notes. Don’t give up hope!”
To those who do not have scleroderma and know little about what life is like with such a disease, Joey says, “Yes, we look normal and sometimes even healthy. But, please don’t judge a book by its cover. This disease is not easy in any way. Ask questions – I love to educate people about the disease, it’s the only way to spread awareness. Please don’t glare at me for parking in a handicap parking spot. You have no idea what is going on in my body and the pain I am in every day.”
So many scleroderma patients who feel that their peers or family members simply do not understand what they are going through voice this type of frustration. And, as Joey mentions, the fact that they look or seem healthy makes it difficult for others to empathize. But, the pain, both physical and emotional, is very real for scleroderma patients. And, ultimately it is our goal through Project Scleroderma to help everyone understand what life is like for these patients, awareness is crucial.