“Do You Need a Jugologist Too?” Mikko Wants to Find a Cure for Myasthenia Gravis

Mikko Dancing "Uptown Funk" With HIs Cousin, Alani
Mikko Dancing “Uptown Funk” With HIs Cousin, Alani

I’ve had terrible ear infections and sinus problems for almost a week now. I’m slowly getting better; I have chest colds now. It’s always best to get sick a few days before Christmas.  I hoped that I would get better enough to make gingerbread cookies with my nephews and mom on Christmas Eve.  And even better, if I could attend my family’s annual get-together at my maternal uncle’s house.  Thankfully, I was able to go for a few reasons: A) My uncle gives me a spare room to rest at his house–I took two naps.  I needed to rest my left ear against a pillow.  B) All my relatives cover their mouths when they cough or sneeze.  One in four people do not; this is what makes simple things like going to church or brunch difficult even though I wear a medical mask.  At my previous job, my coworkers would ask me every two weeks what an autoimmune disease is and still not cover their mouths when they sneezed and coughed.  At my current job, coaching debate, even without asking me for details, the other coaches understand what an autoimmune disease is.  And at the last tournament, when a student was coughing, a fellow judge helped me rearrange the seating chart (no questions asked) to keep the coughing student as far away from me as possible.  I am really blessed to be surrounded by coworkers who know how to use Google.

Little Girl With Charcot Marie-Tooth

Despite feeling worse than usual (my ears hurt everyday as it is but they usually hurt less than the other parts of my body; this is my life with myasthenia gravis), I was so glad I got to make gingerbread cookies with the boys.  We also recorded a short video for a 5-year old girl named Julianna Yuri, who has Charcot-Marie-Tooth (an illness that affects 1 in 2,500 people).  Like myasthenia gravis, it is a neuromuscular disease.  Julianna’s story has become famous through CNN and The Mighty.  Tyson (11), and Mikko (8), and I sang Jingle Bells and wished her a Merry Christmas.  Julianna’s strong faith, style and sense of humor in the face of her devastating illness is beyond inspiring.  Julianna’s mother has appropriately given her the nickname, “the truly living girl.”

Best Conversation Ever

When we were decorating the ninja gingerbread cookies, this conversation happened with my nephew, after he asked about my cane and physical therapy:

Mikko:  Tita Jessica, I think you go to the hospital a lot.  Do you see the doctor a lot?

Me:  More than the average person, I guess.

Mikko:  Do you see the doctor more than Julianna?

Me:  Well, Julianna needs a special kind of doctor, a neurologist.  And her mother is a neurologist.

Mikko:  What about you?  Do you need a jugologist too?

Me:  Yes, I have one.

Mom:  What about you, Mikko?  Maybe you can be a doctor when you grow up?

Mikko:  No, I want to be a scientist.  I want to find a cure for myasthenia gravis.  I’ll make a pill you can take so you won’t have to be sick everyday.

That conversation really floored me.  Mikko understands chronic illness and disability better than some adults I know.  Sometimes, I think that a person can never know “the real me” if they didn’t know me before 2008, the year I got myasthenia gravis.  But, Mikko showed me that is not true.  When he was in my bedroom and observed the books on my bed, he said rather pensively,

“I know you, Tita Jessica.  You like reading, painting, and thinking.”

Indeed, I do.


Please Vote for Fashionably ill in Healthline’s Best Health Blog Contest!

Fashionably ill is currently entered in a contest for the best health blog.  You can vote everyday (once every 24 hours) between now and January 21st.  I’d love your support.  The first place prize is $1,000 and obviously, the distinction of winning the contest.  (If I won, I would use the prize money to help pay for physical therapy.)  To vote, just type in “Fashionably ill” here or (click on the picture above) and it comes up.  Healthline then asks you to register by using your Twitter or Facebook account.  Thanks in advance for voting and sharing!  –xoxo, Jessica




Hi there! I am a patient advocate, writer, and public speaker most well known for my TEDx Talk, “How to Get Stuff Done When You Are Depressed.” As someone who is juggling 5 illnesses: bipolar 2, myasthenia gravis, endometriosis, psoriasis, and asthma, I’m passionate about helping people who navigate life with both chronic physical & emotional pain. If you’re interested in hiring me to speak at your event, check out the CONTACT tab.

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