I have been feeling much better the past three weeks. In my last blog post, “The Loneliness of Chronic Illnesses & Pain,” I wrote about how much pain I was in due to the return of my polycystic ovarian syndrome (PCOS) after a 15-month hiatus, which was triggered by a painful test at an OBGYN appointment. I am not joking when I say the PCOS is my Drago. It hurts a lot. (If you’re new to my blog, I love boxing and I see myself as Rocky and my five illnesses as Rocky’s different opponents.) Anyway, the doctor told me it would get better again and so far it has. I am all caught up on work I missed during the two-month otitis media (recurring ear infections)/PCOS roller coaster and I have been getting out more. It’s nice to breathe fresh air. Last week, I attended a rooftop party and the weather was perfect. One of the best things about feeling better is that I finally got to take some of my favorite people to my favorite place in the world. My mom, my nephews Mikko and Tyson, and I went to Dylan’s Candy Bar. Dylan’s is the closest thing to Willy Wonka and the Chocolate Factory in real life. When we went to Dylan’s, I wasn’t fully recovered but my pain flare-up was coming to an end. I still had to wear earmuffs part of the time but I regularly wear earmuffs to alleviate my ear pain—that is nothing new.
An Explosion of Colors
The boys have seen pictures of Dylan’s on my phone. Mikko, the little one, has asked me in the past why I didn’t take the furniture home with me, which is shaped like giant licorice and lollipops. I tried to explain that it’s not for sale. Before Dylan’s, we saw the Sears Tower (sorry I’m not calling it Willis Tower)—it was the boy’s first time. On the way to Dylan’s, Mikko was telling our Lyft driver all about Dylan’s like he’d been there before. “We’re going to Dylan’s, where the furniture is made of candy!” They were both so happy when they saw Dylan’s for the first time! The explosion of colors and candy was exhilarating for the kids. We spent three hours at Dylan’s. We ate at their restaurant and I had this awesome milk shake that’s truly a work of art. Though it was the boys first trip to Dylan’s, it was my third. I actually do not like eating candy but something about staring at all the colors makes me smile.
“Don’t They Have a Cure Yet?”
When we left Dylan’s and were waiting for our Lyft to the train station, Mikko pointed to my earmuffs, frowned, and said, “Don’t they have a cure yet?” I told him, no, not yet. And I reminded him of that Christmas Eve a couple years ago when I was in so much pain and he said, “I will find a cure for myasthenia gravis whenI grow up.” That was one of the best gifts—Christmas or otherwise—I’ve ever received. I still remember the moment Mikko realized I was sick—he was two years old and he saw me taking *a lot* of medications. Since that time, he’s become my self-appointed guardian angel/physician. I remember once I was staring at the wall—not showing any outward signs of pain. He was only three but he put his hand on my arm and stared at the wall with me.
The Happy Place Doesn’t Always Have to Be Flashy
One thing I’ve learned is that sometimes your happy place doesn’t have to be anywhere flashy. When I was in college and I would get depressed (I have bipolar disorder), I would go to the local theater and stare at the wall of candies. Afterwards, I’d go to the art store a few doors down and peruse all the paints—I was in awe of all the colors.
Sometimes The Happy Place is Not About Where—But Who
Years ago, I wrote an article about my nephew called, “4 Lessons On Loving a Sick Person From a Three-Year Old.” When I was diagnosed with myasthenia gravis–a neuromuscular autoimmune disease–in 2008, the doctor gave me a 50/50 shot of living. In a matter of months, I went from someone who did yoga five days a week to not being able to feel my legs. I told myself I would fight to stay alive for three reasons. And one of those reasons was to see my nieces and nephews grow up. Whenever we’re together, even if we’re doing mundane–things like making sure they finish their homework and eat dinner, it feels like Christmas. I feel joy even though we’re not doing “anything special.” The reality is that sometimes when you have an illness or disability you just cannot leave the house. But I’ve learned that if you’re fortunate to be with someone who loves you, your happy place can be wherever you are.
Who or what makes you happy?
—Your Stylist, Jessica Gimeno
One More Thing—Please Check Out My Chef Mikko!
My nephew started a YouTube channel called, ChefMikko. Check out his first uploaded video, a recipe for … Please share and subscribe 😃
Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!