We are excited to introduce Ivy Cirillo, an inspiring creative genius a.k.a. the young lady behind Perfectly Ambitious — a lifestyle and health care blog dedicated to all things spoonie.
A fellow spoonie, Ivy created her Perfectly Ambitious blog as an outlet about her journey with fibromyalgia. She tried talking to others about it, but they didn't quite understand.
This ambitious (pun intended) twenty-something Florida gal is currently living the Alabama life. She is more than a photographer, and creator — she is a chronic illness warrior. From managing her online store to taking care of three fur babies, this University of North Florida alum has the same number of chronic illnesses as she does fingers.
She makes broken look beautiful and strong look invincible. She’s walked with the universe on her shoulders and made it look like a pair of wings. And, with brave wings, she flies. Let’s not waste any more time as we follow her and learn how to become perfectly ambitious. This is her story.
Q: Good afternoon Ivy. Please introduce yourself to our Backer community and feel name to name a fun fact.A: Hi, BackerNation. I am a blogger, author, and creator, and part-time literacy tutor. I am 22 years young. I live in the sunshine state, and I’ve resided on the Treasure Coast in a small beach town for about 19 out of my 22 years.
My fun fact is I actually used to be a varsity weightlifter and I've worked on Porsches and Jaguars. My dream is to live in the Carolinas so I can see the seasons change.
Q: When and why did your chronic pain journey begin? And, what's your official diagnosis?A: My pain journey has been crazier than other people’s. My first diagnosis was PTSD at the age of 3 and I seemed perfectly healthy until my senior year of high school, which was my first physical diagnosis of hypothyroidism. Since then, I’ve gained about 15 additional diagnoses that include everything from anxiety, lupus (an inflammatory disease caused when the immune system attacks its own tissues), dysautonomia (refers to a wide range of conditions that affect the autonomic nervous system), and fibromyalgia (widespread chronic pain) among others — so I have an entire list of diagnosis.
Q: Were your doctors able to easily pinpoint your conditions or was it less clear-cut?A: Diagnosing was defiantly difficult. For my first physical diagnosis, the doctors actually didn’t do the entire blood test panel so I also have Hashimoto's thyroiditis (when the immune system attacks the butterfly-shaped gland in the neck, thyroid), which wasn’t diagnosed until two years later.
I always kind of knew there was something else besides the thyroid issue, but it actually took five years before a doctor even took me seriously. I have an endocrinologist who told me that I’m too young for more than one illness so no doctor will check me for the other illnesses.
So, it has been a couple years of tests, observing, trial and error with medications just trying to figure out exactly what’s wrong.
Q: Has your chronic pain journey led to surgery of any kind? If so, what was the surgery?A: My surgeries have varied depending upon my diagnosis. In 2016, I had a right-heart catheterization (where a doctor guides a special catheter called a pulmonary artery catheter to the right side of your heart. He or she then passes the tube into your pulmonary artery. This is the main artery that carries blood to your lungs), which was routine for them but not routine for me, but it was much better than I expected it to be.
This year on July 7, I had three surgeries done, which again were routine for other people but not for me. I had a septoplasty (a surgical procedure to correct a deviated septum), *turbinate reduction, and tonsillectomy (a surgical procedure to remove the tonsils) all at the same time.
Q: Can you briefly explain why you had surgery and what someone can expect?A: It was to fix my deviated septum, my chronic sinusitis, and my chronic tonsillitis, which are three of my diagnosis. It was definitely an interesting experience. I don’t know why, but I didn’t expect my recovery to be as difficult as it was. It should have clicked in my head that it was a nose and throat procedure so you’re not going to be able to do much.
Normally, these surgeries are an outpatient procedure but because of my heart and lung condition, they made sure to hold me for 24 hours to ensure everything was working properly and that I wouldn’t need a fourth surgery to stop any bleeding. Luckily, I didn’t.
Mainly, I would have a nurse check on my vitals, give me medication, and leave, which they did every few hours. After I left the hospital the next day, it was a lot of changing my nose dressing, taking lots of pain meds, and eating very creamy foods such as mashed potatoes or pudding. I remember drinking kids Ensure to get protein and nutrients because I basically didn’t eat real food or swallow. I couldn’t breathe through my nose for a solid three weeks.
Q: Wow. Was it difficult to sleep?A: I pretty much slept in my recliner and didn’t move from there except to go the bathroom.
Q: You probably never want to sit there again, huh?A: Oh yeah! Once I could get up and had the strength to move around, I was done with that recliner. I didn’t want to go back.
We both laughed in agreement.
Q: In regards to surgery, what's one thing that sticks out that our community should be aware of?A: My biggest piece of advice for anyone going into surgery, even if it doesn’t require a recovery period, is just make sure you have a really good in-person support system. You are going to need someone to occasionally hold your hand and walk you to the bathroom, if it’s something intense. You’re going to need someone that can get you your medicine every four hours because you can’t get up. You’re going to need people, even if it’s just texting you for motivation and to let you know they’re thinking about you.
So, for me, having a good community support system and people being helpful is my biggest thing. Because you can prepare as much as humanly possible up until your surgery but if anything went wrong or you’re put in a spot where you can’t care for yourself afterward, you’re not going to get through it without someone else.
Q: What was the greatest benefit of your surgery?A: The greatest benefit is more personal than physical. I learned who was there for me and who wasn’t (that’s deep), which was a big factor that sparked a life change dealing with my marital relationship.
Q: Why is it so important to surround yourself with other chronic illness warriors?A: This is what sparked the interest for my upcoming book, "Letters to the Younger Selves of Chronic Illness Warriors.” It’s a huge support system across the entire globe, and it’s so important to immerse yourself in it because just from doing that, I met other chronic illness warriors.
Taking Instagram as an example, someone with Fibromyalgia can use #spoonie to tag a post relating to their chronic illness. I had no idea what the hashtag even meant. I remember posting a photo to my personal account and someone commented #spoonie. Then, other people found me through that hashtag and I’ve even found “strangers” who are now friends as well across the U.S. and internationally.
It’s to the point where if I traveled to Canada, I have a place to stay because I have chronic illness warrior friends who live in Canada. We support each other online and we know what we are all going through. Even when someone doesn’t understand across the globe, we have people who do.
They ask how you are and want to hear your honest answer. They walk in your shoes. When I had my surgeries, I Googled everything about them and scared myself. So, if you share your thoughts with a regular person, they’ll say, you’ll get through it. You’ll be fine. But when someone who actually has been there, tells you [that] you really will get through it, it means so much more because they know from experience.
Q: What is the most powerful thing you’ve learned from your health care journey?A: I’ve learned how truly strong I am. Before, if I wanted to do something, I did it. There wasn’t much effort involved. Now, I’m learning my limitations and to listen to my body, which is something healthy and able people never learn. For me, it’s helped give me a new sense of accomplishment. I’ve learned that even if all I do is take a shower, get dressed, and make myself look pretty, I still accomplished something. Eventually, all of you will learn to appreciate even the smallest of accomplishments.
Q: What is the is one thing you hope that people will take away from reading this Q&A?A: I think the same thing I aim for on my website and upcoming book: to educate the people who aren’t in our shoes but have a chronic illness warrior as a loved one. I want to inspire the people in our community because sometimes you just need to know there are other people out there like you. I want to work towards ending the stigma against mental and physical disabilities. I know that every time I use my handicap walker or wheelchair, which took a long time for me to use in public, people think I am absolutely healthy or faking it, which isn’t a view that should be out in this world.
Perfectly flawed may sound like an oxymoron and maybe it is, but for the Perfectly Ambitious blogger, Ivy, she really makes her flaws seem perfect. She puts the awe in awesome, the possible in impossible making her a real warrior who never takes no for an answer. She's perfectly flawed.
BackerNation feels thankful to receive the opportunity in speaking with Miss Ivy today. Please take a moment and check out her perfect blog by clicking here and if you're looking for seven easy ways to distract yourself from chronic pain, read this too.
Oh, and we can't forget...
“On November of 2018, I'll be releasing a book of, "Letters to the Younger Selves of Chronic Illness Warriors" in hopes to specifically educate, inspire and end the stigmas with physical and mental disabilities. Because I know, had I had a book like that when I was first diagnosed, my chronic pain journey would have been entirely different.”
So, stay tuned, Backers. Meanwhile, if you need more, we encourage you to check out everything the perfectly ambitious blogger has to offer. Thanks again, Ivy!
* for patients with turbinate hypertrophy, turbinate surgery should correct the problem of nasal obstruction by reducing the turbinate size and thereby decreasing airway resistance while preserving the natural function of the turbinates