Fibro Warrior of the Week (#29)
FWOTW: Jen Miller
Location: Zeeland, MI USA
Mantra: Just breathe.
This week we are happy to introduce Fibro Warrior #29: Jen Miller! Jen is a sassy and devoted SAHM (see below!) She enjoys reading and writing and has many places on the internet where she documents her daily struggles with Fibromyalgia. She also has fabulous pink hair and a colorful collection of stockings and socks which you can sometimes spot on her Twitter feed—a fashionable Fibro Warrior, for sure…
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Jen: I was born and raised in Michigan, I grew up on the east side, but now live on the west. My hubby and I have been married almost 19 years and we have four awesome kids (18, 15, 14 and 7). I am a stay-at-home-mom (SAHM). I love writing, reading, and scrapbooking.
FD: When did you first suspect that something wasn’t right? What happened?
Jen: After the birth of my fourth child, I couldn’t seem to get any energy back and was always in some sort of pain. I’ve had pain since I was a child, but this was incessant. I spent more time in bed than out of bed.
FD: When were you diagnosed with Fibromyalgia?
Jen: Officially diagnosed in December of 2010.
FD: When you received your diagnosis, how did it affect you?
Jen: Most people say they were relieved to finally get a diagnosis, but I was not. I kept thinking, “What if they’re wrong? What if it’s NOT Fibro?” I felt as if I was being dismissed. “Oh, you have Fibro.” And that’s that.
FD: Since then, how has your outlook on life changed?
Jen: My outlook changes on a daily basis. Somedays I am so thankful to be alive and somedays I hate being alive.
FD: How does Fibro affect your day-to-day life?
Jen: Depends on the day. Somedays I’m doing okay –– level 4 pain and I can function –— I can get out of bed and do some household chores or whatnot. Somedays I can’t move at all. Winter is terrible for me, I become a hermit basically. Right now it’s summer and my energy levels are much higher. I think it’s also because I get more sleep, I don’t HAVE to be up at 7 am like I do during the school year. There are days when I feel depressed because this is never going away. I try not to dwell on that, though, you can’t. You have to make yourself keep going.
FD: What can’t you do anymore because of Fibro?
Jen: Squat. I know it sounds silly, but my balance is terrible because of Fibro and not to mention the pain it causes my knees! But there are a lot of things I can’t do because I’m tired or in pain. Even trying to help my youngest ride her bike – I can’t even make it down the road to the neighbors house without being exhausted (and that’s like 20 feet.) I have to weigh my options because doing anything – do I have enough energy to do this? Is it very important or should I save my energy for something more important?
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Jen: Owning a cane!
FD: : What has been your experience with seeking medical treatment for Fibro?
Jen: Terrible. Just terrible. Doctors do not know what to do with me. I was diagnosed by a Rheumatologist, but he told me he couldn’t treat me and sent me back to my regular doctor. She didn’t know what to do with me either. So, I went on a trial of different medications (Neurontin, Lyrica, Cymbalta, Tramadol) feeling like a guinea pig. She literally had to look in a book to see what to try to do for me. Neurontin and Lyrica made me a complete non-functioning zombie. Cymbalta didn’t help and getting off the drug was ridiculously horrible. Tramadol (a painkiller) does not help my Fibro at all, but I do take it for my IBS pain. My doctors will not prescribe anything else for me at this point. I’m currently doing biofeedback through Neurocore (http://theneurocore.com) to try to help lessen my anxiety and possibly pain levels and help improve the quality of sleep. I’m only on session 7 – they say it takes 30 sessions to really help. We’ll see. If that doesn’t help at all, I may see a pain management doctor. But honestly, I’ve seen so many UNHELPFUL doctors that I don’t want to see another one again.
FD: How has Fibro affected your relationships, friends, family, partners?
Jen: Friendship kind of goes out the window. It’s very difficult for others to understand and not offend me. I’m overly sensitive as it is. It’s hard for people to understand why I can’t do things. Why I’m not at church every Sunday. Why I have to cancel plans at the last minute. I’m a “difficult” friend. My husband and family are very supportive, though, and try to encourage me and love me.
FD: What is the biggest challenge you face living with Fibro?
Jen: The day to day uncertainty. Will I feel okay today? Will I be able to get out to the store? Will my legs cooperate?
FD: What inspires you to keep on fighting?
Jen: My husband and children. I really think if I had to do this alone, I would be in a much worse condition than I am now.
FD: What advice do you have for other people who are living with Fibro?
Jen: Don’t let doctors push you around, stand your ground, insist on being treated fairly and if they won’t, find another doctor. But do NOT feel bad if you choose NOT to see a doctor or if you choose to NOT seek medicinal remedies – right now I’m not doing anything but living with it. Sometimes it’s all you can do. Take it easy, do what you can –– even if that means just breathing.
FD: Do you have a funny Fibro story you can share?
Jen: Not really a story, but my fibro fog is sometimes ridiculously funny and you have to just laugh so you don’t cry. The things that pop out of my mouth, words backwards or not even being able to think of a word. My kids think I’m hilarious. Really, you have to laugh.
Powered by Facebook Comments