Fibro Warrior of the Week (#14)
FWOTW: Adrienne Dellwo
Location: Eastern Washington, USA
Mantra: “Knowledge is power. The more you learn about your illness, the better you’ll be able to fight it.”
Adrienne Dellwo is our 14th Fibro Warrior of the Week. When not writing about Fibromyalgia and Chronic Fatigue Syndrome, she writes fiction and screenplays. She’s also a busy wife and mother who hates when her kids leave the phone on… -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Adrienne: I’m a true Northwesterner. I was born and raised in southern Idaho, lived in Eugene, Oregon for six years (which is where I went to college and started my journalism career,) and then I moved to Eastern Washington for a better job. I met my husband there and settled in for good. We now have two amazing kids: an 11-year-old son who’s into Boy Scouts, music, and robotics; and an 8-year-old daughter who’s a competitive gymnast. When I’m not writing about fibromyalgia, I write fiction and screenplays.
FD: When did you first suspect that something wasn’t right? What happened?
Adrienne: In early 2006, I’d noticed several odd things, including what I thought were symptoms that my thyroid medication needed to be increased. My doctor kept testing them and they came back fine, but the symptoms continued. Then I had a weird bout of extreme allergies that landed me in the ER twice with anaphylaxis. That tapered off, but then I was back at the hospital two more times – once for a suspected heart attack, and once for suspected appendicitis. Of course, tests showed nothing.
FD: When were you diagnosed with Fibromyalgia?
Adrienne: It was about six months after the suspected heart attack, which is when the pain really hit. My doctor was at a loss and finally agreed to refer me to a rheumatologist. I’d become convinced I had lupus because the symptoms seemed to fit better than anything else I’d come across, but after looking over my test results and doing a tender-point exam (I had 15 of 18,) she diagnosed me with Fibromyalgia.
FD: When you received your diagnosis, how did it affect you?
Adrienne: It was a huge relief. I’d known for months that something was wrong, and it was a scary time. Once I had a diagnosis to go on, I was determined to find a way to beat it. I started learning everything I could about what was going on in my body.
FD: Since then, how has your outlook on life changed?
Adrienne: I don’t take things for granted anymore, and I’m not as much of a perfectionist. As I’ve improved, I’ve become especially grateful for everything I can do.
FD: How does Fibro affect your day to day life?
Adrienne: The biggest change is that I had to leave my job as a TV news producer. It was incredibly stressful, and the noisy, chaotic environment became unbearable. The Fibro fog was the most detrimental – I relied on my short-term memory and multitasking ability to do my job, and I lost both of those things. I’m lucky that my skills were able to get me freelance work, so I could earn a living from home. It gives me the ability to tailor my schedule to my life, which means more time with my family and friends.
FD: What can’t you do anymore because of Fibro?
Adrienne: Early on, I was terrified that I wouldn’t be able to write anymore because my language problems were pretty bad. Those skills came back because I kept using them, though. Now, my symptoms have been mostly in remission for a couple of years, but I still struggle with a few things. Cooking is one of my biggies. It stresses me out and I have trouble keeping things straight. I’ve also lost the ability to read music, and I have a horrible time trying to remember numbers. Physically, most of the issues I have come from overlapping conditions (myofascial pain syndrome, polyarthritis, autoimmune thyroid disease, multiple sleep disorders.)
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Adrienne: Before I was sick, I’d certainly never pictured myself researching medical issues and filling a website with articles and blogs! A huge benefit of not working full time is that I’ve been able to devote more energy to writing fiction, and I finished my first novel a few months ago. I’m working on re-writes now and planning to shop it around to publishers before long.
FD: What has been your experience with seeking medical treatment for Fibro?
Adrienne: It’s been overwhelmingly positive, which I know is a rare thing. My rheumatologist doesn’t treat a lot of Fibro, but because she’s also trained in Chinese medicine, we’ve been able to approach it from a couple of different directions and find some things that help. Mostly, though, I’ve charted my own treatment course based on my research. A lot of it is supplements and lifestyle changes. For other things, like massage, acupuncture, physical therapy, etc., I’m fortunate to have a doctor who will give me the referrals I ask for. She’s also a genius at rooting out overlapping conditions, which has been invaluable.
FD: How has Fibro affected your relationships, friends, family, partners?
Adrienne: It’s been hardest on my husband, especially since our kids were really little when I was at my sickest, but he’s always been supportive and willing to do whatever it took for me to get better. Overall, the experience has made us closer. When I worked in TV news, my hours were always crazy, so between that and having kids it was pretty much impossible to have a social life. Once I was staying home, we were able to start spending time with friends again, usually just getting together at someone’s home. They’ve been really understanding of the times when I wasn’t up to it.
FD: What is the biggest challenge you face living with Fibro?
Adrienne: The uncertainty. The first few years were a roller coaster, and I never knew from day to day how I’d feel or how functional I’d be. Now, I still really worry about over-committing myself, because I still have ups and downs and can’t seem to stop piling on more illnesses. It would be amazing to go a few years without adding new diagnoses and treatments. Maybe then I could feel like I actually had a “normal” state, which I haven’t had for the past seven years or so.
FD: What inspires you to keep on fighting?
Adrienne: My kids. They need and deserve the best mother I can be. The last thing I want to teach them is to give up when things get difficult. They know I have limitations, but they also see that I’m doing everything I can to overcome them.
FD: What advice do you have for other people who are living with Fibro?
Adrienne: Don’t ever think of yourself as a “victim” of illness. That’s the opposite of being empowered, and we need to be empowered to overcome not only our illness, but the barriers that can be in our way because of the stigma attached to it. Learn everything you can, even if you have to read the same article a dozen times to get it to sink in. Learn your body’s cues, what triggers your symptoms, and what helps. Take control of it and do what it takes to get better. It’s hard, and sometimes it feels impossible, but it’s the only way to get your life back.
FD: Do you have a funny Fibro story you can share?
Adrienne: Fibro fog gives us plenty to laugh at, doesn’t it? I remember one day, I noticed that the kids had left our digital piano on. I yelled for them, saying, “Who left the phone on?” They came out of their rooms looking perplexed. I said it again – “Who left the phone on?” My son said, “What are you talking about? We don’t use the phone.” I was getting really annoyed, because I’d heard them playing a couple of hours earlier. About that time, something deep in my brain started to speak up, telling me I’d gotten it wrong. I looked at the piano and my brain said “phone.” I pointed at it and said something like, “That thing, with the keys. You play it, it makes music, it’s a …” Phone? No! “Piano! It’s a piano! Okay, who left the piano on?”
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