Fibro Warrior Wednesday – Interview with SpoonieJen

This week’s interview is with Jen Turner aka SpoonieJen. She is located outside Chicago, IL. She was diagnosed at the very young age of 15, back in 2004.
What lead up to your diagnosis (symptoms, dr visits, etc)?
Well, this gets kind of complicated. I was born pigeon toed (where your feet rotate inwards) and my hips over rotated. This was before the were using correctional footwear or braces for pigeon toed-ness, so my walking was not corrected. This may have contributed to the later issues.

During puberty, I had a growth spurt of about six inches (I’m 5’9!) and that screwed up my left knee. So I started having knee problems, where my kneecap was grinding against my lower leg bone. I had my first knee surgery at 12 years old. After healing and rehab, things were GREAT for six months! I was running, riding my bike, doing sports… But then I was playing softball, felt the snap in my leg and I just got this really sick feeling… I never was able to play softball or any sport like that again.

After that happened, we went for more rehab for almost two years. I finished my final round of physical therapy and the next day I couldn’t move at all. That was my junior year of high school, I was 14. I missed three weeks straight (that’s when I turned 15), and I finally returned to school for the final three months in a wheelchair. I actually got extra credit for learning how to pop a wheelie! Most people didn’t know how to deal with me and I lost most of my friends. (Protip: Wear funky shoelaces. People will either stare above your head or at your feet. The shoelaces work as an incredible ice breaker, and then people will finally meet your eyes. It worked wonders!)

During those three months, I saw the top pediatric rheumatologist in Chicago, and he diagnosed me with severe Fibromyalgia. I can’t quite remember if he diagnosed me before or after the wheelchair though. Funny enough, the doctor who saw me when I first started walking about my being pigeon toed is the doctor who diagnosed me with Fibromyalgia!
What was your life like at the time?
I was just a high school student who dropped her lunch so she could take an extra class and took an insane amount of extracurricular activities (12!). I lived at home with my mom, dad, and two younger sisters.

How did your family initially handle your illness?
I think they initially handled it as well as they could have. My sisters were young, so I don’t think they fully comprehended what was going on. I mean – I was young. My parents were driving over an hour each way for doctor visits to Chicago so I could see the best doctors and possibly damaging their work relationships. Even if I didn’t feel this way at the time, in retrospect, I know that my parents did every single thing they could have.

How has your life changed since Fibromyalgia entered your life?
After I finally graduated high school (I missed 57 days my senior year and graduated by the kindness of a teacher!), I went off to college. I was able to complete three years (barely), and I worked part time. I had to drop out because I became too ill and because my mother was dying from breast cancer. She has since passed. I haven’t been able to go to school, work, or even drive in 4 years. My middle sister has moved to Columbus, Ohio. I had to go from being independent to moving back in with my dad and youngest sister… It is very discouraging. I have no financial independence. For that matter, I have no independence whatsoever. My disability hearing is at the end of this month though, so hopefully that will change soon!

What do you feel is the most challenging aspect of Fibro?
Personally, the most challenging aspect of fibromyalgia is the relentless, unceasing pain and fatigue. Then again, a break from it could make it feel even worse.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I also suffer from SLE Lupus, JME Epilepsy, Arthritis, Asthma, Raynaud’s Phenomena, major depression, severe anxiety, obsessive compulsive disorder, and agoraphobia. Everything aggravates my fibromyalgia. Any little flare up, there goes my Fibro! It is extremely challenging. I was just officially diagnosed with my Lupus and Epilepsy in July/August of 2013, so I’m still learning how to deal with those. I’ve probably had both for two years, however.

Spoonie Jen

What (if anything) have you found/ done that has improved your symptoms?
Meditation has helped me a lot, along with deep breathing. Yoga, Tai Chi, and regular stretching. I’m a musician (I sing and play the electric bass), so music is also a lifeline. Hang on to your hobbies! If you don’t have any, try to find some that work for you. I am housebound almost completely (I leave the house MAYBE three times a month), so my video games, internet, music… They keep me connected to myself. I highly recommend investing in something like the Xbox Kinect. If you want to play on the XBOX with me, my username is GentleCyclone =) The incredible community on Twitter is a huge help too!

How open are you with friends & family about your illness & symptoms?
I lie my ass off. “I’m fine.” “It’ll pass.” “Don’t worry, it’s nothing.” I say those things with my eyes closed, deep breathing. Those are the biggest lies I think I have ever told. But what will telling the truth do? It will upset them and then I will have to deal with my pain and with calming them down. I know this isn’t necessarily the healthiest thing to do, but right now that is what I feel I must. Plus, most of the time the worst of it does pass… Eventually.

Do you blog about your illness? If so, what inspired you to do so?
I used to. I broke my laptop in a seizure, so I cannot blog anymore. It is too difficult to type on my tablet. If I win my upcoming disability hearing, I’m planning on getting a laptop (with insurance!) and some speech-to-text software, as typing can be extremely painful for me. I may even start a vlog! As far as inspiration, it’s the same thing that inspired me to become an e-patient advocate. I want to take all of my bad, all of my pain, and turn it into something good. I want to turn to that 16 year old girl in a wheelchair who is terrified by all of that pain and who has no idea what to do, and how no one else knows what is going on, and be able to tell her that I’ve been there, and that she can talk to me. That she has someone to advocate for her. That someone knows the system and is ready to fight for them.

What is the best advice you’ve received regarding Fibromyalgia?
Listen to your body, no one else.

What was the worst advice that you followed?
Use an ice pack. OW! I don’t respond at all well to cold.

What is your favorite way to cope with your life as a spoonie?
Laughter, Twitter, Facebook groups, singing (especially jazz!), my electric guitar, and lately I’ve been cuddling up with a beau. It may not go far, but I have a good feeling.~ Mainly, you just have to be able to laugh about these things. If you don’t, then that’s it. Fibro wins.

What is one thing you’ve learned about yourself since your diagnosis?
I am strong. I am a warrior. I’m not weak like I thought was.

Now that you’ve gotten to know a little about SpoonieJen’s story be sure to connect with her on Twitter, Facebook, and email. You can also check out her blog (hopefully she’ll be back blogging with us soon). You can also catch up with her on Skype, if you want to chat, she can be found @Jen.turner207