I’m home for the holidays .. doing a bit of traveling by visiting friends and family. I am staying with my parents in Jackson, MI soaking up the memories & smells of being home.

Taking Care of Health

I had two appointments at the hospital in Ann Arbor this morning, one for Radiology & other Urology. I wasn’t there too long, maybe 2.5- 3 hours. Much more of the easy tasks today.. just measuring different things.. I guess is the easiest way to explain.

Since, I am not able to receive certain medical supplies needed for my disease, my doctors and nurses made a to-go bag with a bunch of syringes to last a few weeks. They also called an advocate to talk with me about my insurance complaints. It was a great day — all around.. except I had memories flood 120mph making my head spin!

As I sat in the new children’s hospital, I could even remember the feeling of being scared & helpless as a child. The atmosphere of the transition from the old children’s hospital to the new Mott Children’s & Women’s Hospital was different.. the bunny footprints on the wall were gone, giant clear window.. and the yellow Big Bird statue was in a completely different arrangement. But memories like those.. are hard to forget. Imprinted in your mind, forever.

My sister or mother would sit during these appts as a child, but now I go with the ease of my own schedule. I remember crying on the way to the hospital &  entire time I sat in the waiting/patient rooms. It’s really hard to talk about what the procedures were on my body, but rest assured – it was a traumatic experience.

I found an old blog post from 2011, which explains a few of the procedures.. It’s raw, so be prepared when reading this piece.

This morning, I sat in the radiology room and had flashbacks of the horrible times when I was forced to be strapped to the bed for cooperation. I didn’t want the tests.. or any of the medications. I became so prone to these experiences that I would just lay there & hold my breath. Finally I came back to reality when a familiar nurse walked over to take me back to the ultrasound room. She was very nice and complimented how long its been & how much I’ve grown. University of Michigan is my home hospital, the doctors know my history.

The nurses & doctors asked  questions on health improvements.. After a few different nurses & doctors came swinging in & out of my room, I finally expressed my frustration with the medical insurance and how drained my time & energy is every single day. My favorite doctor, Dr. Park, said there’s a lot of people rooting for me at the hospital.. That’s all I needed to hear because when I was in the room by myself, I couldn’t stop crying. It feels good to have someone notice the amount of struggles I’ve faced & compliment on how many people admire the improvements.. I don’t stop.. there is something inside my mind, body and heart that just doesn’t give in. Maybe stubborn-ness or just my attitude, but I deserve the best .. and being healthy is everything I dream for…


This evening, I went thru old photos as a baby growing up. I held a photo of my body covered in tubes from my nose to toes. I tear up thinking about how I couldn’t breathe because there was a lot of complications happening & very little control. God took his hands and held my body for months until I was ready. I always see a light…

My legs stuck straight in the air and were tapped in brown cloth. My hands had small clothing pieces covering my fingers… it feels like a dream.  I don’t even want to continue talking about this right now, so much emotion is controlling my mindset.. But the next time I find that inspiration to continue talking about my past, you’ll be the first to know.