Fibro Warrior of the Week (#13)
FWOTW: Amy Mullholand
Location: Risingsun, Ohio, USA
Mantra: “Education is key. Without education, there won’t be change. Without change there won’t be research. Without research, there won’t be a cure. Educate others about living with chronic pain conditions.”
Our 13th Fibro Warrior, Amy Mullholand, is a warrior indeed. She advocates for change and believes that Fibromyalgia patients should educate the public about the disease every time the chance arises. Amy loves photography and can also find the humor in any situation—well, eventually! -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Amy: I was born in Bowling Green, OH, 6 weeks before my due date. I weighed 4 pounds 10 ounces when I was born. I’m an only child, and we traveled around state to state when I was young, due to my dad’s line of work. Now as an adult, I live about 14 miles from the town I was born in, and so do my parents. I feel as if we’ve come full circle, so to speak. I have four children. Two boys and two girls. My oldest is in the grad program at DU, studying economics with emphasis on both International and Developmental Economics. My youngest is also a girl. She’s 17 and a senior in high school this year. She’s going to pursue a career as a Registered Nurse after high school graduation. My oldest son, you’d find hits for all over the internet if I gave you his name. Including even a photo of him in TapOut Magazine. He’s in the U.S. Army Reserves, an amateur MMA cage fighter, an assistant varsity wrestling coach, and he’s pursuing a career in criminal justice. My youngest son decided that college wasn’t up his alley, and he married straight out of high school. This marriage gave me my first grandchild, a granddaughter. Now, March 14th him and his wife gave me my first bio-granddaughter. I love both of my granddaughters more then life! The babies, photography, and advocacy are my passions!
FD: When did you first suspect that something wasn’t right? What happened?
Amy: Now as an adult, I can look back and see that something wasn’t right way back as a young child. I remember laying on the living room floor with my legs drawn up, rolling back and forth and crying in pain. The pain was in my legs and knees. My mom used to give me baby aspirin and try to rub them, in hopes of it helping and soothing me. She thought is was just growing pains. Growing pains are real, but what I had was way more then growing pains. I first really felt something was truly wrong with me as a teenager in high school. I made good grades, I was a cheerleader, and had such fun with my friends, but I couldn’t ever keep up. I was always so fatigued, and in so much pain. When I’d complain about it to my mom, she’d tell me that I was just being lazy, or it was all in my head. That I was a hypochondriac because I was too young to be so tired and in so much pain. Today, she feels just horrible about that time period, but she just didn’t know.
FD: When were you diagnosed with Fibromyalgia?
Amy: Even though I’m sure I’ve had it for years on end, I wasn’t officially diagnosed with Fibromyalgia until October of 2011. I just never mentioned to my doctors how tired and how much pain I’m always in because I was scared of a reaction such as the one my mom always gave me as a teen. I had a new family physician. A female that I really liked. I told her how bad of pain I had. She gave me a shot of Tordol. The next visit, I still had the pain. She gave me another shot and told me she wanted to do some blood work. The next thing I knew, her secretary was calling me and asking if I had a preference for a rheumatologist to be referred to.
FD: When you received your diagnosis, how did it affect you?
Amy: I was stunned. I also was in disbelief. I kept thinking, “There’s no way in the world I just have Fibro. My pain is too severe, and I’m too fatigued to just have Fibro.” Wow. How naive I was back then. All I knew is the little I’d heard around about Fibromyalgia through the years. Basically, that it wasn’t real. That it was a garbage can diagnosis that doctors gave to patients to try and shut them up. That it wasn’t real. I knew that my pain was real! So I couldn’t just have Fibromyalgia.
FD: Since then, how has your outlook on life changed?
Amy: I don’t take anything for granted anymore. I appreciate things, even the little things, so much more now. I realize now that life really is too short.
FD: How does Fibro affect your day to day life?
Amy: I have other illnesses in conjunction with Fibro, but my health, my pain levels, my insomnia have completely changed my day to day life as I knew it even just a couple of years ago. My husband left me out of the blue in April, 2012, because he was too stressed about my illness. (My diagnosis of Fibro 6 short months earlier.) My health has rapidly declined since then. I’ve been stuck in almost constant pain, fatigue, and insomnia flares. Standing in one spot long enough to even fry an egg puts me literally in tears from the back pain. I have to do dishes in steps. I stack the dishes, then sit and rest. I wash the glasses, then I sit and rest. It sometimes may take me up to four hours of doing/resting until I have them complete. It’s taken away my ability to work. It has even taken away my old favorite pastime of photography. I still take photos, but I can only manage a few at a time because the weight of my camera makes my upper arms ache too much. The strap around my neck puts my neck and shoulders in severe pain, so I can’t wear my camera. My ability to walk or stand around is completely gone, so there went my joy of waking around parks and the such, taking nature photos for a few hours at a time. Having Fibro has completely changed my entire life.
FD: What can’t you do anymore because of Fibro?
Amy: I think I just touched on that a bit above, lol. Besides what I’ve stated in the previous question, I can’t get down on the floor. I’ll never be able to sit on the floor, and play with my grandkids. That really makes me sad. I can’t cook and clean like I used to. I can’t take off and go for a nice long walk. Fibro even has stopped me from being able to sit in my living room and watch a movie comfortably with my family. The only piece of furniture I own that doesn’t cause severe back pain for me, is my computer chair. Even then, the computer chair hurts me if I don’t have the computer desk in front of my to lean on and rest my arms on. So I can’t even roll that into the living to watch tv with my daughter.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Amy: Being an advocate for anything. Being interviewed, lol. I’ve been blessed to have had another interview besides this one, and I also have an interview that will be out in June, in a quarterly Fibro magazine. I never ever would’ve imagined that I’d fight so long, and so hard for anything in my life. I will advocate for further research, to find a cure, or at the very least a concrete, solid treatment plan, until the day I can fight no longer.
FD: What has been your experience with seeking medical treatment for Fibro?
Amy: I’ve been pretty lucky I guess. The first rheumatologist I went to—the one who initially diagnosed me with Fibromyalgia— I couldn’t stand. The guy would cut me off when trying to speak, looked at me like I was dumb, and was just a jerk in general. I didn’t like him, therefore I didn’t trust him. After my second or third appointment with him, I still didn’t like or trust him, so I came home and called The Cleveland Clinic to schedule a second opinion appointment. I had already done my research, and knew that their department of rheumatology was ranked number one in the state of Ohio, and that it was ranked number two in the entire nation. I received an appointment with Dr. Carmen Gota. I liked her so well that I continued my care with her. She did not make me feel dumb or like I was faking like the first rheumatologist did. She was kind and compassionate, and really cared if I was in pain or not.
FD: How has Fibro affected your relationships, friends, family, partners?
Amy: Well, I’ve already pointed out that my husband walked out on me. I hadn’t worked in years anyway due to my health, so to this day I’m still not really sure what about me having Fibromyalgia made him walk away. The rest of my family has been wonderful and more supportive then I ever could’ve hoped for.
FD: What is the biggest challenge you face living with Fibro?
Amy: The biggest challenge I face living with Fibro is trying to accept the fact that I can’t work. Trying to figure out how to support myself and my youngest daughter. This just kills me. In years past, I’d worked three part time jobs, took care of four children ages 6 years old down to 3 months old, all while carrying 18 credit hours in nursing school. To go from that to not knowing how to even buy new clothes when needed is a huge challenge for me and has me constantly beating myself up.
FD: What inspires you to keep on fighting?
Amy: This pain. The fatigue and insomnia. The feelings of low self-worth and self-esteem. That is what inspires me to keep on fighting. I pray every day that a huge breakthrough in research will yield either a cure or a solid, universal treatment plan that will work for everyone affected. That I may have hope yet in my lifetime to feel and act normal once again. There are way too many people out there that don’t understand what Fibromyalgia really is. How completely debilitating it really can be. If more people start to understand what Fibromyalgia really is and how it effects us, then it’ll be easier to put more pressure on government officials, researchers, pharmaceutical companies, etc., to find the funds for further research. Education is key to a cure.
FD: What advice do you have for other people who are living with Fibro?
Amy: Take one day at a time. If you have to, take one hour or one minute at a time. Know that you never are alone in your feelings. There are so many of us out here, and it’s like we’re all one big family. We’ll always be there for anyone who needs or wants us. Never give up hope of a cure being found, and educate anyone and everyone you possibly can about what a day in the life of a chronic pain sufferer is truly like.
FD: Do you have a funny Fibro story you can share?
Amy: I do have a funny story to share! Unfortunately, it’s way too long for me to repeat it here in this interview. This was just a mere couple of weeks before my husband left me. If you’d like a big laugh (that I did NOT find funny at the time), then please feel free to go read this blog post of mine, called PacingYourself.
Follow Amy on Twitter: @jaammull
Like Amy on Facebook: www.facebook.com/TheFibroFrog
Follow Amy on her blog: www.thefibrofrog.blogspot.com
If interested in Amy’s “Living with Chronic Pain” seminar or to inquire about being a keynote speaker at one of her seminar sessions, please use the contact form on her blog.
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