Fibro Warrior of the Week (#20)
FWOTW: Sheri Duff
Location: Visalia, CA United States
Mantra: Laughter is the best medicine! – and also – Never give up!
Sheri Duff is our 20th Fibro Warrior of the Week. An active child and an accomplished musician, she used to play music professionally. She claims to suffer from Fibro fog; however, don’t expect her to remember any of the evidence…—FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Sheri: I was born in a small farming community nicknamed, “The Swedish Village.” It’s real name is Kingsburg, California. I grew up on a farm with row crops and tree fruit rather than with livestock. I was the odd child, more into music and poetry than farming. I had an active life with dance lessons and swim-team as a kid and also water skiing and ATV riding in the dunes with my family. I started playing music at age 9 with the flute, then added piano and tenor saxophone. As an adult, I had the privilege of playing Big Band Jazz professionally for 11 years.
FD: When did you first suspect that something wasn’t right? What happened?
Sheri: I was sick at the age of 7 with what was thought to be Rheumatic Fever. The diagnosis was never on paper as the one symptom I lacked was the rash. However, I was left with a heart murmur. In high school, I was busy with marching, concert and jazz bands and after every weekend competition I spent a whole day sleeping, thereby missing a lot of Mondays at school. After a week in Hawaii with my college jazz band competition, I came back with a second degree sunburn and pneumonia. I slept 24 hours straight. No one could wake me. I was constantly tested for mononucleosis in high school and college, as doctors didn’t know what else to test for back in late 70’s and early 80’s. After the birth of my daughter in 1987, I got a lot worse and it took three years and about five doctors to come up with the diagnosis of Lupus.
FD: When were you diagnosed with Fibromyalgia?
Sheri: Many years into the Systemic Lupus diagnosis, plus many more like depression and IBS, I was also diagnosed with Fibromyalgia now riding along with my Lupus. This was only about 10 years ago while my daughter was in High School. She is now 26 years old.
FD: When you received your diagnosis, how did it affect you?
Sheri: It affected me in the way of, “Wow, great, another thing to fight on top of the other ten or so things already going on with me.” Plus, I also thought that the additional increase of pain I was enduring had a further explanation, something else to learn about and conquer.
FD: Since then, how has your outlook on life changed?
Sheri: My life has changed to the fact that the increased pain made it much more difficult to work. However, I did work. I had a daughter to raise. Eventually, just two years ago, after missing lots of work due to pain, I was fired unfairly. I was too sick to sue. It would just cause more stress and more pain. I am proud of the fact that I did manage to work full-time thirty years in my life.
FD: How does Fibro affect your day to day life?
Sheri: When I could work, I still did but my quality of life was gone. All I did was work and sleep. My daughter learned to start cooking and we hung out after school and work on my king- sized bed. The need for rest and sleep was ruling my life. Now I’ve been out of work for the last two years and pretty much bedridden on most days.
FD: What can’t you do anymore because of Fibro?
Sheri: I no longer can sleep through the night as the pain always wakes me up. I can no longer ride the ATV’s in the dunes or water ski as a fall or wreck on either would finish me off. I no longer can play in my band as the hours needed are too long and that tenor sax is too heavy on my neck. I can no longer stay up all day either as naps are required. Without enough sleep, the Fibro pain just intensifies. None of us need any more pain.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Sheri: I’ve always been a writer/poet since the age of ten. However, I never thought I would be writing my poetry in less than 140 characters on Twitter in hopes of helping others in some small way get through their days of pain and anguish, too. I never thought that a medical diagnosis would connect me to the most wonderful people over the entire globe. I am greatly thankful for all of my new friends. I also never thought that my bed would be the place I spend most of my days.
FD: What has been your experience with seeking medical treatment for Fibro?
Sheri: What happened for me with my Lupus diagnosis would have happened with the Fibro, too, had I not already been through years of doctors until I found my Rheumatologist in Stanford, after watching her speak locally. She is the one who realized I had Fibro during my explanation of the pain I was feeling and a physical exam. Fibromyalgia is an invisible disease and I have found that many doctors don’t even believe it exists. I guess I am one of the lucky ones as I had Lupus first and after many years had found a doctor that was great.
FD: How has Fibro affected your relationships, friends, family, partners?
Sheri: (Most) Family and friends really don’t believe I’m in this much pain. They tend to think I’m just whining for extra attention. Like, really, who would want to do that? Fortunately my husband, daughter, and grandson are behind me 100%. They are the ones that get me through each day.
FD: What is the biggest challenge you face living with Fibro?
Sheri: There is no one answer to this question. Everything is a challenge now. I have to use the electric scooter when shopping at the big stores as can no longer walk that far. I have to shower sitting down on a stool and use a shower wand as I can no longer stand up that long. The list goes on. Everything is difficult. Sometimes even sitting up is a huge challenge.
FD: What inspires you to keep on fighting?
Sheri: The answer to this is: first it was my daughter, then my grandson, and now also my wonderful husband of almost two years of marriage. I also am inspired to keep going from all of my friends on Twitter. Helping them as they help me is a big factor in my everyday life. I don’t have to be home in bed “alone” anymore.
FD: What advice do you have for other people who are living with Fibro?
Sheri: I would advise to find a distraction for your pain. Find something to do. Read a book, do a crossword, listen to music, write down your feelings, play a video game, etc. Do what it takes to take your mind off of your pain even for just a little while. Also, NEVER, EVER GIVE UP!
FD: Do you have a funny Fibro story you can share?
Sheri: A funny Fibro story for me would be the brain-fog that it comes with. I was a straight A student, Lifetime Member of the California Scholastic Federation, and second in my college graduating class. Now, however, is a different story as I lose my place in a normal conversation right in the middle of a sentence. I get words backwards or upside down it seems. The funny part of this story is the fact that due to the brain-fog I can’t remember any stories at this moment. LOL
Follow Sheri on Twitter: @osaxy
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