Kristin Sciarappa is another young Fibro Warrior. Kristin turned 30 in March of 2016 and was diagnosed with fibromyalgia at the age of 28. She lives in Milford, CT.
Tell us a little about yourself:
I’m 29 years old (the big 3-0 in March!) and I’ve been married for a little over a year to my other half, Jim. I don’t have any children, but I have a cat named Kit Kat who I treat as if she were my child! I work full-time as a pharmacy technician. I enjoy baseball, especially the Boston Red Sox, listening to music, watching my favorite TV shows and spending time with my husband (which doesn’t happen as often as I’d like).
When were you diagnosed?
I was diagnosed with Fibromyalgia in 2014 at age 28.
What lead up to your diagnosis?
My pain started in late 2011, and at the time I only had lower back pain. Soon after, I had numbness and tingling from my hands to my feet. The numbness eventually went away, but the pain never did. I went to my primary care doctor, orthopedic specialists, and a neurologist. They all sent me for blood work, X-rays, MRIs of my back, neck, and brain, and even an EMG (nerve test). All my tests came out “fine”. Since they couldn’t “see” anything, the doctors couldn’t help me. (One of them told me it was all in my head. Thanks, jerk.) I gave up for a short time and tried to live with the pain, hoping it’d go away. Unfortunately, it got worse and became widespread. I was hurting from head to toe, and I was desperate for someone to help me. I went to a rheumatologist and finally, 2 and ½ years after my pain started, he diagnosed me with Fibromyalgia.
How did your family initially handle your illness?
No one thought it was that serious. Pretty sure no one knew it was chronic and they thought that all my symptoms would go away soon.
What do you feel is the most challenging aspect of Fibro?
I would say management. Whether it be on a day to day basis, or even week to week. I have to put work as my first priority (since my bills won’t get paid otherwise), so most of my energy (or “spoons”) goes into working. Being on my feet 8-9 hours a day is incredibly painful and draining, so coming home to cook and clean is out of the question. I usually only have enough energy to change my clothes and take my contacts out. There were days I nearly passed out after work. On days off I try to catch up on what I can’t do on work days, but then I don’t end up getting enough rest. My social life has taken a complete nose dive due to my schedule. I hardly see my friends and family anymore. It’s not because I don’t want to, but I literally can’t work 9 hours on a Saturday and go out afterward. Unfortunately it’s the things I want to do the most that end up taking a back seat.
Do you have any other co-existing conditions?
I’ve had migraines and anxiety since age 18 or so. I used to only get migraines every once in a while, maybe one every 2 or 3 months. Now I get them more frequently, at least twice a month. As for my anxiety, I go through good and bad periods of time. When anxiety is high, my pain increases.
What (if anything) have you found/ done that has improved your symptoms?
Medication and rest. I really have to work on getting more rest…
How open are you with friends & family about your illness & symptoms?
I’ve only talked about it with a handful of family members (husband, parents, grandma) and my 3 best friends. My husband and mom are the only ones who I talk to about it on a regular basis. There are others who know I have Fibro, but they either don’t understand the seriousness or they don’t care (or both). I’m a pretty open person and I don’t mind talking about it, but it’s so hard to explain. I don’t go to many social events anymore so when I do, it’s not something I bring up so as to not put a damper on the gathering. But if I don’t attend something I get the “Why weren’t you at so-and-so’s?” and I really wish that everyone just knew so I don’t have to go through a long explanation each time. I usually just say I was sick.
What is the best advice you’ve received regarding fibromyalgia?
To set realistic goals and ask for help when needed. I don’t have to spend a day off doing every single chore I neglected. I prioritize and do what is most important, and anything I physically can’t do, my husband will take care of.
What was the worst advice that you followed?
To “just push through”. I will admit that I push myself at work every day but it’s because I have to make a living. However, there are times when I didn’t have to push myself and I did. On Christmas Day this year, I was in so much pain. I had worked a lot leading up to the holiday and had a busy Christmas Eve too. I forced myself to go see my family (who, of course, I wanted to see), but I paid for it. I had a miserable time and had to leave early because the pain became unbearable. I should’ve stayed home and had a quiet day with my husband, or not have made 3 stops the day before. My reasoning was because if we missed a stop along the way our family would’ve been mad or disappointed.
What is your favorite way to cope with your life as a spoonie?
I turn to my “good distractions”: I put on a baseball game, listen to music, watch a Criminal Minds or Law & Order: SVU marathon, call my mom or spend time with my husband.
What is it that inspires you to keep going, despite your illness?
Being an advocate for Fibromyalgia and supporting those who are going through similar experiences.
What is one thing you’ve learned about yourself since your diagnosis?
I’m stronger than I thought. I may seem weak to others, but it is a miracle that I can get out of bed and go to work every day. When I get a flare-up, it’s so bad that my skin hurts. I don’t know how I manage to survive on certain days, but I guess it’s thanks to adrenaline… and caffeine.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro?
I would say there is a lot of trial and error with Fibro, from the diagnosis stage and beyond. If you don’t find a medication or treatment right away that helps, try to be patient. I had to try several medications, change dosages, etc, to find what worked for me. I would also highly recommend support. Anyone with a chronic illness needs love and support, from either family and friends or an online support group (or both!), you don’t have to go through this alone.
Is there anything else you’d like the readers to know?
To anyone reading this who doesn’t have Fibro: Just because we don’t look sick, doesn’t mean we aren’t. Just because we don’t have a cane or wheelchair, doesn’t mean we don’t have a disability. Fibromyalgia is a real, chronic illness. All I ask is if you have a family member, friend, coworker, or neighbor with Fibromyalgia, please show them love and support. Any little thing will go a long way. We don’t want pity, just understanding.
If you’d like to connect further with Kristin, she invites you to email her, and check out her blog.
If you are a Fibro Warrior and you’d like to share your story, please contact me. Each of us has so much to share and we can all learn from each other and inspire each other. You are inspiring.
More Fibro Warriors:
- Fibro Warrior: The Fibro Juvie, Bailey
- Fibro Warrior Interview with Suzanne of FibroMomBlog
- Fibro Warrior Interview with Cindy C
- Fibro Warrior: Janet Komanchuk
Leave a Reply