My Rare Disease

Welcome to the first Chiari Carnival celebrating Rare Disease Day. Please take a moment to introduce yourself to the readers of Chiari Carnival. Hi, I’m Renee, but my handle, Shalunya, might be more familiar to you.  I’m 42 and a single Mom to one 22 year old critter. Soon to be wife to an amazing man that I met playing poker on Facebook. I am an avid blogger, an aspiring poet with the vocabulary of a fifth grader, a quilter in training, a photography hobbyist, a loyal Oklahoman and an all around quirk. I am an enigma, just ask anyone that knows me, including my doctors.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you? It was August 2005, I was 36. I went for a doctor’s appointment to receive my ‘normal’ MRI results. My doctor was reading my MRI report in front of me, she read the words Arnold Chiari Malformation, type 1, then she had to leave to go look up the meaning. 

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?Well, of course! I have an unrelated heart condition, diastolic dysfunction.  I also suffer from classic chronic migraines, degenerative disc disease, peripheral neuropathy, disequilibrium, spinal stenosis and so on and so forth.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery? I am a proud zipperhead since November 2005.  I can, fortunately, report that decompression surgery is the only Chiari surgery I have undergone. But I did dye my hair bright pink to celebrate it before it was shaved off by the surgeon.

Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?Yoga to keep my body as flexible as possible since pain tends to cause one to become stiff, meditation/prayer to keep my mind clear and focused on what is important, rhythmic breathing to help increase tolerance to pain, guided visualization for relaxation and journaling to cuss about everything that bothers me without negatively impacting those that love me. 

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?Ohhhh there are some good ones. There is visual disturbance, with my particular brand I have no idea what it is like to close my eyes and get a blank slate to sleep under. Then there is clouding of consciousness, i.e. brain fog, which causes me to spit my toothpaste on the floor instead of in the sink or to put my keys in the fridge. Cognitive impairment, memory problems, if my brain does not deem a memory as important it doesn’t file it away properly and therefore I cannot remember it. It’s like it never happened. Last but not least!  One of my favorites, formication, the sensation of having bugs crawling on your skin. 

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?

The best piece of advice for those that support chronic illness sufferers is to listen to Christine Miserandino’s Spoon Theory.  She suffers from Lupus and explains the challenges of living with chronic illness clearly and beautifully. I have never read or heard anything else that describes our predicament so precisely.  It’s long but it’s worth it.  You walk away with a great appreciation of the challenges we face just trying to get through an average day.

 

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude? I listen to a lot of great music.  Most days I don’t bother turning on the television to be bombarded by a cacophony of colors, movement and noise. I also, intentionally, find things to laugh about. My boyfriend is great at sharing stupid, funny videos with me on youtube. I remember that if I can do three little things I can get through anything! If I can talk about my problems, laugh at my predicament and pray about my challenges I can deal with anything that comes my way.

A great quote can remind us to keep the faith during those dark moments in life.  Can you share a quote or saying that provides you with inspiration? Hmmmmm, just one? Okay, it would have to be a Wendell Berry quote. “It may be that when we no longer know what to do, we have come to our real work and when we no longer know which way to go, we have begun our real journey.” It’s just a great reminder that what seems to be the end of something is really just the beginning of something new.

On behalf of Chiari Carnival thank you so much for sharing some of your Chiari journey with us.