Salonpas had the pleasure of meeting Lindsay Fogarty, The Rare Disease Mom blogger, when she reviewed the Salonpas Pain Relieving Patch Large. We were so inspired by Lindsay, who is afflicted by multiple rare diseases and who cares for an autistic child, that we asked if we could interview her about her life and her blog.
What was the catalyst for you to start your blog?
I created my blog ultimately to inspire, and to help as many people as I possibly could. I found that just by speaking out, and talking about my health which is something that so many people keep private, I was taking a step in the right direction. So many patients, and caregivers seek out a landing place, like a ship seeking out a dock, for rare disease and autism, and I hoped that my blog could serve as that for them. I wanted the world to know that those of us with disabilities, and pre-existing conditions are people, not just statistics, and our lives hold value.
How common is a ‘rare disease’ and how has your rare disease affected your life?
A rare disease is defined as a disease that affects less than 200,000 people, but there are more than 6,800 rare diseases. To put that into perspective around 200,000 people live in Salt Lake City. It would take the population of Salt Lake City 140 times over to make up the amount of people with heart disease, which is not a rare disease. I, however, have multiple rare diseases and every aspect of my life is affected – even down to my ability to drink water. I actually can’t drink water anymore, and I don’t have an actual explanation for it beyond theories of my different rare diseases causing different symptoms. I rely on a central line and daily saline infusions to stay alive. It is a daunting, and terrifying existence that I cherish each and every day.
When and why did you become an activist, advocating for patients? How are you able to help others?
There was no singular event that led me to becoming an activist. Instead it was a series of moments that were interwoven into my daily life that were consistently forcing me to ask myself the same question, “Who is speaking for people like me?” The first time I called my Congressman, and was unsatisfied with the short response was the moment I knew I had to do more. One of the most important ways that I have found to help others, is by giving them the language they need to connect with their legislators, physicians, family, and friends who don’t understand.
Having a rare disease, what special challenges do you face with an autistic child?
There are some mornings I wake up in so much pain that it’s difficult to move, or with a migraine and I see the look of disappointment on his face when he walks into my room because he knows me so well and he knows that I’m hurting. My son is a morning person, and the moment he opens his eyes he wants to talk to me about ships, or planes or whatever interesting fact he’s learned. I get overwhelmed with guilt when I cannot be actively engaged in those conversations. The older my son has gotten, the types of support for his autism that he needs have changed. I am able to be his parent, and take care of his needs, and wants but there are things that will be left out of his childhood because of my rare disease that he struggles to cope with and understand because of his autism. It is a double-edged sword.
What is your advise for other people who have the same rare disease you have.
I heard a saying once that has stayed with me, “Fear is only as deep as the mind allows.” The best advice I could ever give to anyone with any of the rare diseases I have would be to educate yourself on the conditions you have. Knowledge helps ease fear. You know your body better than anyone else, the way that it moves and feels. You know the pain you feel is real and you deserve to have the tools necessary to feel the best you can. Learn everything that you possibly can, and then read more. Remember if you have children, to teach them to make the best decisions for their bodies in a positive way.
Tell us about a typical day in your life; from when you arise to when you retire.
My days now are not how my days are typically, as the world we are currently living in has changed so drastically. Unfortunately, there is no typical day when you live with the conditions that I have. Varying symptoms from multiple rare diseases are a cause for a varying life. There are some mornings I wake up relieved that my leg is not burning as severely as it was when I went to sleep, but my nausea is overwhelming me. The course of my day will begin upon that, and build upon that. If I’m walking too much at work, my knees might sublux (partially dislocate) more and it will start to bruise. I use my cane at work most days. The days that my pain is the highest, it feels as if all time has stopped. Pain stays centered at the front of my mind and I have to consciously push it backwards in order to complete my tasks. I work full time, standing on my feet, walking on my feet for 8 to 10 hours a day. My body screams at me most days. At some point during my day, I cook breakfast, lunch, and dinner for my family. I home-school my son, and I’m a full time college student myself. I have private projects, such as my blog and I volunteer on multiple political campaigns. I call legislators, and speak with those that I hope can make a difference for rare disease research. When I fall asleep at night, my body has twitched from muscle pain. I rest when I need to, and then I wake up bright and early to hear my son say, “Good morning, It’s daytime” all over again to do everything all over again.