Fibro Warrior Wednesday – Julie Ryan

I decided that I should probably interview myself, but I wanted to do something a little bit different, so I decided to do a video interview. I will include a transcript (sort of) below, for those who prefer that over the video.

Tell us a little about yourself:
My name is Julie Ryan, I am 38 years old and I live in Huntsville, AL. I am married to a wonderful man (going on 8 years). We are child-free by choice, but we do two have to cats. I am a full-time student, freelance writer, and blogger. I enjoy poker (online and in real life), reading (fiction and non, usually one of each at the same time), and road trips to visit local wineries.

When were you diagnosed?
I was diagnosed with Fibromyalgia in the summer of 2010. I was 34 at the time.

What lead up to your diagnosis?
Beginning in February or March of that year I started feeling sick, kind of like I had the flu. I was achy all over and had a low-grade fever that wouldn’t go away. I was in school full-time and didn’t have time to deal with it so I ignored it as long as possible. However, once I started having major eye pain and numbness and tingling in both my arms and hands at the same time, I couldn’t keep ignoring it. My best friend’s mom died of MS so she was adamant that I get to the doctor, and I did. The neurologist (who I was already seeing for migraines) ran all sorts of tests and couldn’t find any answers (all the MS tests were negative, thankfully). Eventually, he sent me to the Rheumatologist who diagnosed me with Fibro. By that time, I was feeling worse and worse and had dropped one of my classes just so that I could keep my grades up in the others.

How did your family handle your illness?
My family was great. My husband never doubted me for a minute. He’d already been through several health challenges with me. I know he was frustrated at the lack of answers, but he was never doubtful. My mom was always right there with me and as we discussed what Fibromyalgia was we both figured that it likely ran in our family.

What do you feel is the most challenging aspect of Fibromyalgia?
To me it’s the unpredictable nature. The lack of sleep, the chronic pain, the fatigue, they all suck. But, it sucks more being unable to predict when those things will hit. Too often they interfere with life. Things can be going along just fine, and then Fibro hits right about the time you’ve made plans because you thought you were ok.

Do you have any pre-existing conditions? And how do they interact with your Fibromyalgia?
I have IBS, Migraines, Cluster Headaches, Endometriosis, and Hypo-Thyroid (and probably a couple more that I forgot). They all interact, but mostly Fibro makes the others worse. I’ve managed to get the Fibro under control but I still can’t seem to get the others figured out.

What have you found/ done that has improved your symptoms?
Changing my diet, going gluten-free has had a huge impact on my Fibro symptoms. Since I made that change in 2012 I’ve not had a significant Fibro flare that couldn’t easily be attributable to something else (one following a surgery, another after dealing with chronic shoulder pain for several weeks). I also juice daily. I drink a green juice each morning (or try to). I can tell the difference when I’m not getting the extra nutrients from that. I also try to keep up a regular exercise routine, movement helps. It doesn’t have to be a full workout, but I have to make sure I’m at least stretching every day. Coping techniques and learning to listen to my body also go a long way. Learning to just take it easy when I feel worn out, or I’m hurting I think has made a big difference in the number of flare days I have.

What inspired you to blog about your illness?
Initially it was partly to keep track of things for myself, but mostly to share what I learned as I went. I was already an avid blogger, and I knew that I didn’t want to take over my private blog with Fibro/ health related stuff. So, I started a separate blog (this blog) for that purpose. As time went on, I began sharing not only my journey, but I tried to share thoughts that might inspire and help others as they coped with this painful illness.

How open are you with your friends and family about your illness/ symptoms?
Surprisingly, not as open as you might think. It’s something I struggle with. I really don’t like to focus on my symptoms or the pain, so it has to be really bad for me to mention that I’m hurting or “dead” to my husband, friends, or family. My Mom and Dad say they can tell it in my voice on the phone when I don’t feel good. I don’t doubt that. I know when I don’t feel well I have a harder time just speaking and getting enough volume for those close to me to really understand me. I mumble more. I guess I feel like with my blog if someone wants to listen they can make the choice to read or not read. If I’m complaining in person I’m not giving them a choice, so I best make sure it’s worth it.

What’s the best advice you’ve received about Fibromyalgia?
Be willing to try anything and listen to your body. Don’t automatically dismiss a possible treatment because it sounds like too much effort. But, don’t automatically accept it either. Do your own research. And speak up for yourself. You know your body better than anyone else, better than any doctor ever will.

[Tweet “You know your body better than any doctor ever will.”]

What is the worst advice you’ve followed?
Probably some of the medications I’ve tried. Just trying them in general on the basis of trusting a doctor because he has an MD, instead of doing my research. There have been quite a few of them that left me feeling pretty bad. Luckily, none of the effects were permanent.

What is the one thing you’ve learned about yourself since your illness?
That I’m a good researcher and a pretty good writer. Sounds odd, I know. But, without Fibromyalgia I wouldn’t have written this blog, and that wouldn’t have led me to freelance writing, or to many of the opportunities I’ve had because of it. I’m pretty proud of what I’ve accomplished despite Fibromyalgia.