Fibro Warrior – The Fibro Juvie, Bailey

We are starting the new year by bringing back the Fibro Warrior interviews. Bailey was diagnosed with Fibromyalgia at 17, and has recently started sharing her experience on her blog, Fibro Juvie. Bailey lives in Nevada with her parrot and hamster.

Tell us a bit about yourself:

I am 22, unmarried, with no kids. I have a parrot named Tonks, who keeps me very entertained, and a Hamster named Sampson. I am a certified dog trainer at Petsmart, and love love love my job. I am in the very early stages of getting a service dog, who I hope to train myself.

I enjoy spending time with friends and family, and being outside either hiking or horseback riding.

What lead up to your diagnosis?
What didn’t lead up to my diagnoses? The first major sign that led my parents and I on the hunt for answers was after a horseback riding accident my freshman year of high school. I broke my shoulder and elbow, resulting in surgery to repair the fracture. My shoulder and elbow continued to give me pain well after the healing period. After many doctor’s visits because of the pain and discomfort, I was diagnosed with a regional pain disorder, meaning I had lingering pain in my arm and shoulder due to the accident. However, soon thereafter, the pain began to spread and we were once again on the hunt for answers. I saw my pediatrician regularly, saw a pain management doctor, neurologist, nutritionist, rheumatologist, and countless other doctors who ran every test imaginable. It took years to finally reach a conclusion. Years. I was in high school suffering from a condition no one can see or understand with no answers.

It was inevitably the rheumatologist who diagnosed the mystery condition as fibromyalgia 4 years after the initial accident. However, after finally receiving a diagnosis we believe I have been experiencing symptoms since early childhood.

How did your family initially handle your illness?
My parents were, as I was, relieved to have a name. We could finally call it something. And confused, what exactly was it, how long would it affect me, how exactly would it affect me, is there any hope of a cure? Eventually we all adjusted just fine and together we moved forward as a family. I was, afterall, still an active teen.

What do you feel is the most challenging aspect of Fibro?
The most challenging part for me is the judgement and lack of understanding. “You don’t look sick,” “You’re too young to be in that much pain,” “Why can’t you do that?” “Everyone else is doing it,” “You can’t possibly be in that much pain” It’s very disheartening when you hear these phrases, even from well meaning people.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Yes. I am Lactose Intolerant and suffer from Raynauds Disease, IBS, and Chronic Fatigue as well. Once I found out I was allergic to Lactose, many symptoms lessened. Now I just watch what I eat. While there is some dispute whether the three remaining conditions are separate from the Fibro or just another part of it; personally I don’t care. I was diagnosed with each condition independently, and while they do seem to coexist possibly as just one disorder, it is easier to explain some of these conditions on their own rather than explaining each symptom of Fibro (which we all know would take somewhere around an hour to do).

What (if anything) have you found/ done that has improved your symptoms?
Stay active. Even if it doesn’t help the pain, it certainly helps your state of mind. Making plans and sticking to them regardless of the pain helps keep your mindset in a good place.

How open are you with friends & family about your illness & symptoms?
I am extremely open with friends, family, coworkers, and even strangers about it. I want to educate people about invisible conditions and that they can and do affect young people.

What inspired you to blog about your illness?
I started the blog to document my journey of having Juvenile Fibromyalgia because I have not found very much support or blogs revolving around young Fibro sufferers.

What is the best advice you’ve received about Fibromyalgia?
Listen to your body.

By listening to my body I know how much to push myself and when to stop. It isn’t that I listen to the pain, I just listen to how much the pain is affecting me.

What was the worst advice that you followed?
Just do it.

Just doing it does not account for the current status of your pain, or the repercussions you will face later. No, don’t let it hold you back from everything; but it is okay to take a minute to calculate the cost.

What is your favorite way to cope with your life as a spoonie?
Long horseback rides. Yes, there is a certain amount of cost involved in horseback riding. But despite the risk, there is a large reward in doing something you so very love and enjoy. Taking a long ride helps not my pain level, but rather my mindset. Mindset is important if you are going to overcome things like the anxiety and depression often paired with Fibro.

What is it that inspires you to keep going, despite your illness?
I was diagnosed at 17. I knew very early on in my diagnoses that this was not going to go away. It was never a matter of living my life, but one of having a life at all. My life had not yet even begun when I was diagnosed. It was either keep going and have a life, or sit back and watch life go by.

My faith also has a big impact on keeping me positive. I was blessed with Fibro. It gives me a unique look on life. I am forced to seek out help, be humble in my abilities, and take life one step at a time. All things I believe God wants for us.

What is one thing you’ve learned about yourself since your diagnosis?
I am strong. I am able. I can do whatever it is that I want to do.

I went to college. I moved out of my parents home. I ride horses and train dogs. I’ve traveled. I’ve ziplined and parasailed. I hold down a job. I have loving, caring, fun friends. I can.

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Know yourself. Similar to know your body, knowing yourself and sticking to it is important. It is easy to get lost in the medical lingo, emotionally unattached doctors, lingering side effects, and various tests. Don’t let anyone define you but you. You know what you are feeling. You know what you want to accomplish in life. You know you.

Is there anything else you’d like the readers to know?
You are not alone. You are strong. You are capable. You are wise. Do the things that make you happy regardless of the cost sometimes.

Thank you Bailey for sharing your story.  Be sure to check out Bailey’s blog, Fibro Juvie, at  fibrojuvie.blogspot.com

 If you enjoyed this interview and you’d like to share your own story, please contact me. We can all learn some much from each other, and have so much to share.