This week’s Fibro Warrior interview is with Ella, a 17 year old high school student who was diagnosed with Fibromyalgia in 2012, at the ripe old age of 15. As you’ll see she is one amazing and mature young woman.
What lead up to your diagnosis (symptoms, dr visits, etc)?
A lot of pain. Knee issues from being a dancer, arm issues from being a gymnast, and mysteriously intense headaches and migraines. First pains showed up one spring when I was 12, but for a couple years I only experienced pain in the spring (which we now suspect was because of test season; tests lead to stress, stress leads to pain.) When I was fourteen I started having the headaches daily, I stopped sleeping, I suddenly started getting very nauseated, pain was spreading through my ligaments and my joints, and I became extremely sensitive. Or more like, my senses did. I felt pain instead of touch, pain instead of sight, and pain instead of sound. This was in September. By June, my parents were freaking out and we started rushing around to doctors, leading up to my diagnosis in August.
What was your life like at the time?
Um, I was fifteen…. I was tutoring, babysitting and dog walking. I lived with my mom, a dad, two sisters and a cat.
How did your family initially handle your illness?
This is where things get complicated. My mom was diagnosed with Fibromyalgia when she was in her thirties, for less than a year. After months of medical checks and doctor visits, she was diagnosed with Fibro and told it was completely safe for her and my father to try to have another kid (they already had my oldest sister). Soon enough she was pregnant with my middle sister, and during the pregnancy she didn’t feel her Fibro pain. After my sister was born, it just never came back.
Then, when said middle sister was fourteen she was diagnosed with Fibromyalgia, after a bad bout of whooping cough.
So as you can tell, my family was no stranger to Fibro by the time I was diagnosed. The main thing that threw everybody off was that my symptoms looked nothing like my sister’s, so at first no one suspected Fibro and I was even reassured by doctors that I would not “contract” Fibro like her.
Clearly it was hard for my family to adjust to having two sick kids instead of one, but my parents did their best to take care of all of us and keep everybody going.
What do you feel is the most challenging aspect of Fibro?
Balance. Finding the balance between being sick and being a teenager, the balance between taking care of myself and missing out on life, and the balance between being a fun and supportive friend but also being honest and genuine (honestly, sometimes I feel like sh*t and don’t feel like talking). But most of all: finding the balance between being Ella and having Fibromyalgia.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
A month after being diagnosed with Fibromyalgia, we found a cancerous growth on my back. About five billion checks were run and my body was poked, prodded, screened, photographed and cut until it was final: it’s cancerous and it’s gotta come out. I had surgery to remove it and done is done.
Other than that, as I mentioned earlier there are knee problems, for which I have been in physical therapy for the better part of four years. My eyes also have narrow angles (which leads to Narrow Angle Glaucoma). Everything else seems to be caused by the Fibromyalgia.
What (if anything) have you found/ done that has improved your symptoms?
Tea. Books. TV. Friends. Fluffy blankets. In other words, nothing substantial but mainly distractions and comforting things.
We’ve tried bunches of different medicines (including homeopathic), none to much avail. I currently go to acupuncture once a week, as well as to my physical therapist, and I keep up a regular exercise schedule.
How open are you with friends & family about your illness & symptoms?
Pretty open, though of course it depends with whom. Most people. Certainly if someone asks me a question about my situation, I answer with full honesty. My two closest friends and very understanding and supportive. Beyond that, they also both want to be doctors, so that plays in well.
Do you blog about your illness? If so, what inspired you to do so?
I do! Sick and Sick of It is where it all goes down. I didn’t really need inspiration to blog. I write all the time anyway, because writing has always been my greatest outlet. When I got sick, that was just what I started writing about. I started the blog itself on a whim: I happened to think of WordPress, I opened the site and the front page gives you the option to sign up. So I did. And that is where it all began…
What is the best advice you’ve received regarding Fibromyalgia?
I don’t think anyone gave me advice. Or maybe I just wasn’t listening. Whatever I know, however I manage, I figured it all out by myself and I feel good about that.
What was the worst advice that you followed?
That I don’t need to tell everyone at school what is going on with my health. That it’s fine to take my time and only tell the people I want to tell. It really came back to bite me.
I go to an extremely small school: my grade has only seventeen students, and the grade above me has only seven. Everyone knew I wasn’t going to gym classes, I wasn’t showing up for morning classes and I left school early whenever I wanted to. And apparently, everyone thought I was making up an illness to get out of doing stuff I didn’t want to do. Unfortunately, I was not aware of what everyone was thinking until the beginning of this year. It turns out that people had been whispering behind my back and spreading rumors about me for quite awhile. When my friend came and told me what was happening, I hugged her and got to work. My teacher and I came up with a straightforward lesson plan, which she gave to the two grades. She started by writing “Fibromyalgia” on the board and asking if anyone knew what it meant. I had prepared informative pages with all the facts, and she handed them out to everyone and had them read it in groups. She asked how they think someone with Fibromyalgia must feel. And then she told them that I have it.
Life has been so much better since I plucked up the courage to let her do that. School is a much better place for me now.
What is your favorite way to cope with your life as a spoonie?
My friendships and my blog. Both are supportive, both are fulfilling, and both make me very happy.
What is one thing you’ve learned about yourself since your diagnosis?
I may not have the power to change the situation I am in, but I do have the power to change my attitude; it’s time to really embrace the things and the people that make me happy, savor everything that is good and not let the bad tarnish the good. And also, when in doubt, go to sleep and wake up tomorrow. As my dad always says, tomorrow is another day. I love you, tomorrow.
What are your plans for the future?
I’m hoping to incorporate writing in whatever I choose as my career, because I like it and it comes very naturally to me. Lately I’ve been interested in marketing and PR and how it all works, and I’m looking into a summer internship in that area. Other than that, there are many things I would like to learn but not actually practice in, like medicine and psychology. Like my mother always says, may I simply live a long healthy life in which I can accomplish all that I wish to.