This week I’m pleased to interview AshleyJane from Concord, NH. I discovered her via Google Plus and loved her take on finding ways to be both stylish and comfortable despite chronic pain.
Tell us a little about yourself:
I live with my fiance, his 11 year old daughter and our gentlemanly cat named Gil Pender (named after the Woody Allen movie, “Midnight in Paris”.)I work extremely part-time as a book-keeper and a substitute teacher.
When were you diagnosed? How old were you at the time?
I was 22, my last year of college. Over the first 2 years, we went through several different combinations of autoimmune/arthritis type diagnoses.
What lead up to your diagnosis (symptoms, dr visits, etc)?
As a child I had chronic headaches and body aches, but it was my last year of college when the debilitating fatigue set in and I started seeing specialists.
What was your life like?
I was going to college in Washington, DC. I dropped out of all classes except those I needed to graduate with my degree. I remember it was very hard getting from my apartment to the Metro, and then the Metro to campus. I had a really supportive roommate who would come home from work if I needed her. I had a boyfriend who was uncomfortable with the reality of illness. I remember during a particularly harsh hospital stay him sitting at the side of my bed, complaining that he had had a bad day and was disappointed that I wasn’t trying to reassure and cheer him up. I think I pretended to be asleep so he’d go away. I ended up finishing the last the 2 weeks of classes from my parents house in NH.
How did your family initially handle your illness?
I think they were scared and stressed. My mom has a mysterious neurological autoimmune condition and I got the feeling she felt immediately guilty, as if her genes were to blame. (We now know it’s on both sides of the family.) I think they had a harder time accepting the “chronic” part of the diagnosis than I did. They were beyond supportive financially, paying for super expensive COBRA insurance and covering my bills. Both my parents flew down to DC to bring me home to NH when things got really bad.
What do you feel is the most challenging aspect of Fibro?
A combination between the pain and fatigue and the lack of a blood test proving it’s “real.”
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Yep, I have Systemic Lupus (autoimmune) and POTS (when the autonomic nervous system tells your brain to react severely to standing up and being on your feet.) I like to say that they overlap each other in a Venn Diagram kinda way.
What (if anything) have you found/ done that has improved your symptoms?
Lyrica. Exercising in a heated therapy pool. Dry needling. Tramadol on a regular basis, not waiting until the pain is really bad.
How open are you with friends & family about your illness & symptoms?
I’m very open when asked. Sometimes I don’t volunteer daily updates because I feel like everyone’s sick of hearing it.
What is the best advice you’ve received about Fibromyalgia?
Last year my counselor advised me to switch specialists and start seeing the doctors up at Dartmouth Hospital. The difference in quality of care was enormous. It’s a 60 minute drive but it’s worth it.
What was the worst advice that you followed?
The worse thing was the LACK of advice my first doctor gave me. I had to ask for the tender points test to even get the diagnosis, then ask about the prescription Lyrica – which ended up improving my quality of life tremendously.
What is your favorite way to cope with your life as a spoonie?
I’d say it’s a tie between my wardrobe and blogging.
What is it that inspires you to keep going, despite your illness?
Not letting the illness deplete my personality – I view that as letting the illness win and there’s no *&^%# way I’m going to let that happen.
What is one thing you’ve learned about yourself since your diagnosis?I learned the untreated chronic pain I had as a kid was not normal. I learned that I am, and have always been, way tougher physically than anyone, including myself, thought.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Be sure to work, even if it’s just a little bit. Be sure to socialize and get out of the house, even if it’s just once a week.
If you enjoy the Fibro Warrior interviews, and would like to share your own story (either as a Fibro Warrior or a Spoonie Caregiver) please contact me.
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