Even though it’s estimated that 5 million people worldwide have Lupus, lupus patients can often feel alone and isolated. Aside from having your symptoms misunderstood by family, friends and even the doctors you turn to for help, the very invisible nature of lupus can make it hard to find others to connect with. So, here is the first of hopefully many interviews and profiles of people with lupus, who are doing awesome things in their lives and for their communities.
Are you or do you know an Awesome Person with Lupus? Drop me a line!
Name: Christine Annichiarico aka FREEK-A-RELLA 3024 (love it in caps) Gold Coast Derby Grrls…yes the spelling is right.
Age: Just turned 38
Born: March 15, 1974
Now Living: Ft. Lauderdale, Florida
What kind of lupus do you have? Systemic
When were you first diagnosed? Looking back I realize I probably had symptoms as a teen but officially diagnosed in May 2000, I think.
What are the main day-to-day symptoms you’ve experienced? Fatigue, RA, pain, joint stiffness, IBS, Sjogrens, sores in ears/nose, kidney and skin rash, not to mention the mental aspect.. those are the top but as you know there are 12,000 more!
How has having lupus affected your activities and life in general? When I was first diagnosed I thought it was a certain death sentence. I was diagnosed with chronic fatigue, fibromyalgia and RA before the lupus. All those other thing were manageable but people die from lupus. That was all I heard. It changed everything about me at the time. I was a young mother of 2 on the verge of a divorce, I was depressed, told I was crazy and nothing was really wrong with me, I was in pain all the time and nothing helped. I made myself sicker each day. I put on a lot of weight (thanks to the steroids too), I didn’t exercise, and couldn’t play with my kids the way I wanted too ’cause I was too tired or too sick. I let lupus take over my life and not in a good way.
Taking meds, changing meds, doses, thinking about every move I made and how it was going to make me feel in an hour was a full time job. I didn’t have a life…I just had lupus! Then just before I turned 30, I decided I wanted my life back. I started walking, biking, eating better, doing more activities physically and socially. I also stopped taking almost all my meds. Not something I recommend but it was worth it to me at the time. I started to feel better, stronger and more optimistic that I could have a full life. The Dr. told me when I was diagnosed that I would probably be in a wheelchair by the time I was 40…thanks doc!
How did you first get involved in roller derby?/ Were you already a derby girl before you were diagnosed with lupus? I have always been a “rink rat”; roller and ice skating. I loved it. Competed a bit as a kid and teen also. I watched derby on Saturdays just like everyone else at that time. I always thought those women were incredible and I wanted to be a derby queen just like them. So around 2006, a friend of mine moved to S. Carolina and she joined a league there. She would tell me all about it. There were also TV shows about derby popping up here and there. I knew it was something that was going to be big and I wanted in. Then one day, my then boyfriend showed me an article on the front page of the local news about some roller grrls that had started a team just a few months ago right in my area. I immediately got online to research them, sent many emails and by the following Sunday in June of 2008 I was there and have been ever since. I was managing my lupus at the time I started derby.
Roller derby is a serious contact sport – has having lupus made you more prone to injuries? Do you do anything extra to protect your health out on the track? Currently I have the worst injury I have ever had in my life. I broke my wrist simply roller skating. No contact, no hitting, just skating and standing. FREEK accident, really. I was not wearing a wrist guard at the time. I’m a very good skater and have never fallen the way I did probably, ever in my life.
Roller derby is a serious full contact sport like football or rugby but on skates. We train to protect ourselves and each other. It’s the number one rule. I’m sure it make things harder, I know it does. My recover time is longer than most after long training sessions or bouts (those are the games). I cant overdo it. It does hold me back a bit. I have to think about my body more so than someone without lupus. Warming up is super important, hydrating and eating well before during and after, and stretching afterwards have really helped. I don’t go out there thinking “oh I have lupus I better not skate my hardest or best” I just know that after I need to take extra good care of me. Which usually means ibuprofen and bags of frozen peas on sore body parts, usually knees and shoulder. I also have to think about what I do outside of derby that might affect my performance. Too much junk food, too much sun, drinking whatever it is. I try not to do stupid things that will affect my performance on the track…but it does happen occasionally!
At the same time, roller derby is about as bad ass as activities come. Has the sport changed how you see yourself and your lupus? Roller derby is the most bad ass sport, with the most badass women and men I have ever known. I am so proud to be a part of roller derby for the last 4 years. The sport is growing and evolving each day. It’s so exciting. Derby changed everything about who I am. Its made me stronger physically and mentally, made me a better leader on the track and at work. It made me realize that I can do a lot more than I ever thought I could or was told I could. The best part is the family I gained. I came to roller derby to be athletic and roller skate but I never expected to meet the best people I will ever know. Lupus is a small side dish on my plate. I can’t think about it 24/7. You’ll go crazy. I did that before, not so much fun. I have to put a little more thought into what I’m doing and be sure to keep myself safe and take extra care to recover after. Roller derby has kept me active, flexible and healthier than I would have been without it. I would love to find that doc now and slap him in the face for telling me I would be in a wheelchair. I’m almost 40 and the only wheels I have are on my feet!
What advice would you give to other struggling lupies?
Thanks to internet and social media, grrls like us have a way to find each other and share what we go through. Its not easy. I’m very lucky that lupus doesn’t keep me from playing roller derby. This is not the case for all lupies. Be honest with yourself, family, friends and your teammates. They may not know what’s really going on, but if they are supportive its the best kind of medicine. Learn your body. No two lupies are alike. You have limits and you need to respect them to a certain degree. You don’t have to be super woman all the time. Pick and choose what’s important and what can wait. Eat good, sleep well, exercise and educate yourself. Don’t believe everything you read. You will go insane! If you want to play roller derby, try it. The beauty of this sport is that you can be involved in so many ways. You can be a skater, ref, support staff, stats, admin or just be a super fan and promote the sport. There is a place for everyone in derby. I always tell people lupus is what I have not who I am.
My name is FREEK-A-RELLA! I’m 38 and I have lupus and I play roller derby and I kick ass!