No Tie Tennies
One of our members invites you to walk a mile in her shoes:
Q: Current Age?
A: 51
Q: Age of Onset or start of symptoms?
A: I was 39 when my feet became so mangled, swollen, hot and red from arthritis that they required surgery. However, my orthopedic surgeon thought it was OA caused by my 15+ years of being an avid runner and athlete. He never for a moment thought of RA (at least not to my knowledge – it was never mentioned). I continued to display more systemic symptoms that started coming more frequently, until in 2003 I also began having swollen, red and hot finger joints. That’s when my internist finally connected the dots and tested me for RA at the age of 43.
Q: Age of Diagnosis?
A: 44
Q: Where are you located?
A: Mishawaka, Indiana
Q: What is your profession?
A: Disabled Advocate for Autoimmune Arthritis
Q: What are your Medical Conditions or diagnoses?
A: Rheumatoid Arthritis, Sjogrens Syndrome, Raynauds Phenomenon, Fibromyalgia, Hypothyroidism, Hypoglycemia, Endometriosis/Fibroid Cysts (although that has quieted down since I now seem to be crossing over into menopause), Eczema, Depression, Anxiety/Panic Disorder. I am on a “watch and wait” status for Systemic Lupus Erythematosis.
Q: What are your hobbies?
A: Reading, goofing around on the computer, hiking/walking outdoors.
Q: What is one thing your doctor didn’t tell you about your Autoimmune Arthritis that you wish they had?
A: How unpredictable life was going to be; how difficult it was going to be to try to schedule “around” my disease(s), and how many “friends” I would lose along the way.
Q: If you could tell your past self something before diagnosis, what would it be?
A: Knowledge is power. Find out everything you can about your symptoms and your illness(es) and use it to your advantage. Don’t take your doctor’s word as gospel, even though you may love your doctor. It’s still your body and you know your body best. You’re the one who has to put your body to bed at night and drag it out of bed in the morning. Stand up for yourself; come to your appointments armed with information and be sure all your questions are answered and that your voice was heard.
Q: What would you like to tell others newly diagnosed with Autoimmune Arthritis?
A: What you are experiencing is not “just you” and it’s not “in your head”. Autoimmune diseases cause systemic symptoms that are so varied and diffuse that not even doctors can describe or explain them all. Reach out to some autoimmune support groups and you will see mirror images of yourself, all at various stages of our disease, and you’ll be amazed at the “sameness” in our stories. We may not all experience the same symptoms and not at the same time, but the similarities are so striking it is mind boggling. You can’t help but feel a sense of home, a sense of community, with these fellow sufferers. And together we all share tips and ideas that help each other cope and wade through the journey that is our diseases, one day at a time.
Q: How would you describe your personal style?
A: I’m definitely a casual tomboy who still likes to show a little bit of trendy female coquettishness. So, kind of like, J. Crew meets Aeoropostale. LOL
Q: What part of dealing with your Autoimmune Arthritis has made the biggest impact on you?
A: The part that has had the biggest impact was definitely dealing with “the losses”, the things RA took from me, like running and teaching aerobics and archery and taekwondo do. And then, shortly thereafter, I lost my career of 25+ years. I was a very athletic person, and I took great pride in my work; those things were a huge part of my identity, and when I could no longer do those things, I kind of lost track of who I was.
Q: Favorite quote?
A: “Life is a shipwreck, but we must not forget to sing in the lifeboats.” ~ Voltaire
Q: What are three random things about yourself that others may not know?
A: 1. I have to eat everything on my plate one food group at a time, saving the food group I like best for last.
2. I am completely addicted to Starbucks. It’s a good thing I’m so poor because otherwise I would probably just live there and work at one of their tables doing IAAM work on my laptop with my frappachino in front of me. J
3. I am an organizational fiend and I have lists for everything. Groceries, what I’m going to tell my doctor at my next visit, what I need to get done around the house… If there is an event coming up or I’m going away on a trip, I’ll start making lists WEEKS ahead of time about what I’m going to need to buy and pack, and who I’ll need to contact to reschedule appointments or shut off utilities, etc. People have always teased me and said I need a list to keep track of my lists!
Thank you for walking a mile in my shoes!
Check here to see all the blogs in this series.
If you would like to be a featured blog entry for Walk A Mile In Our Shoes, please fill out the submission form below. I will need a picture attachment of the footwear you are wearing and your answers to the items listed above in story. They will be anonymous, no names given, just your information and responses.
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