What's It like?

So I was recently asked (well, texted) by a very good friend what it is like to deal with a chronic illness everyday. She is dealing with some ongoing issues of her own, and having trouble understanding the everyday handling of said issues. This is usually the point in the conversation that I would refer someone to "The Spoon Theory".


"The Spoon Theory" is an awesome story written by Christine Miserandino, explaining what it is like to live with Lupus on a daily basis. The long of the short of it: those with chronic illnesses have only so many units of expendable energy. Before using any unit or "spoon" you have to think ahead through your whole day, save spoon units you may need for things you have to do, and how external forces can affect the number of spoons you have. It is a lesson on how a chronically ill person is unable to do everything at once, how to keep an extra "spoon" in your pocket for emergencies.

It is an excellent way of explaining everything: the need to constantly think ahead, the emotional toll it can take, the hidden blessing in the struggle. While it helps, it is different for those with Crohn's. And she had already read it. So how to explain it further?


This past month my beloved VW got caught in a snow bank, and in the trouble of getting it pulled out I broke the reverse gear (and as it turns out did additional damage to the transmission - but that's a different and longer story). For two weeks, while waiting for time and money to get my car fixed, I had to drive around without a reverse gear. Every time I left the house I had to think ahead to where I was going. Did I know how to get there? If I got lost, would there be places I could turn around without having to back up? Did they have parking where I could pull through the space and not have to back out? I had to cancel plans with friends whom lived in-town where only parallel parking was available. I had to use two parking spaces when going to work.


Aha! Again: constantly thinking ahead. Can I get where I'm going without having to use the bathroom? Are there clean and accessible bathrooms? At restaurants, is their food I can eat?


So, not only how many "spoons" I have on a daily basis, but is their parking for my "spoons"? Okay the analogy isn't perfect, I'm working on it, but it's a start. Just like me.

Check out the official spoon theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

New Funny Book by fellow blogger!

John Bradley recently released his new book The Foul Bowel:101 Ways to Survive and Thrive with Crohn's. Bradley, a British Crohnie, has been thriving with Crohn's for 30+ years. His blog can be found here: http://www.foulbowel.com/12112.html.

Check it out! He has a great sense of humor - a necessity in life, and in Crohn's.

Abbreviations and Acronyms and terms. . .

A short list of Abbreviations and Acronyms and other terminology I will frequently use:

BMs - Bowel Movements
"The Doc" - My GI, who shall remain nameless
GI - Gastroenterologist

GP - General Practitioner

My Story - Part One

From the best of my recollection this is what my experience has been.

For as long as I can remember (probably around age of six or seven), I have had stomach aches, random diarrhea, fatigue and joint pain. I was a slender little kid, wearing slim sizes until puberty, and its associated weight gain, hit.


The stomach aches were dismissed by my school nurses and my pediatricians as a "nervous stomach". It was true that my abdominal pain and intermittent diarrhea seemed to increase in times of stress - whenever I had a test or big project or book report due. The joint pains were accounted for a "growing pains". I remember waking up in the middle of the night with charlie horses in my calves so badly, I would scream, waking my parents up. Heat, calf rubs and ibuprofen took care of those. The tiredness? I was an active, growing child and "needed the rest". Sure every kid needs a nap - but after every soccer or field hockey practice and game? After every birthday party or sleepover?


This continued through to high school. And so did labels: hypochondriac, "emotional" (how can having emotions, as a human, be not "normal"? And what is "normal? - another topic for another time - I digress).

Senior year of high school beginning in the fall, I lost more and more weight. My jeans began falling off of me. I came home exhausted from school everyday and by the end of October was too exhausted to get up and even go to school. I was missing more days than I was attending. After going to see my GP (General Practitioner) - the same who told me three months earlier I had Irritable Bowel Syndrome and needed merely to increase fiber in my diet - she sent me to a GI (Gastroenterologist).

He listened to my history, looked at me, looked at recent blood work and told me he thought I had Crohn's Disease and scheduled me for a colonoscopy. As I began to get tearful the Doc asked what my worst fear was - I told him the big "C": cancer. The Doc told me at my age of 17 that would be highly unlikely.

I had never heard of Crohn's Disease, didn't know anyone who had it. My parents had heard of it, but didn't really know what it was. We went home and googled it. I remember sitting at my father's desk in his office in our house, breaking out into tears, saying "I don't want to have this."

Prepping for the colonoscopy was the worse part of the whole colonoscopy experience. This was back in 1999 - the days of the Fleet Phosphosoda prep. If you haven't experienced this delightful "drink": imagine taking a cup of water and dissolving as much baking soda into it as it will allow. Then drink it as fast as you can without simultaneously barfing. Within an hour you begin to have frequent, painful BMs (bowel movements). You have to undergo this experience (if I remember correctly) three or four times. Until your BMs are watery and clear. And throughout this you are only permitted to have clear liquids - no solid food, and nothing red or purple colored. Red or purple appears like blood through the scope. And so I underwent through a day of this.

The next day I awoke, and my mom drove me to the hospital, where I was hooked up to an IV for fluids and anesthesia. They wheeled me into the endoscopy suite and shot some of the "good drugs", the stuff that makes you happy and sleepy, into my IV. I woke up to The Doc saying "Emily, you have Crohn's disease." I responded with "Thank God". I finally had a name to everything that had been going on for the past ten years. And even better, something that had an established treatment.

The Doc told me my "Thank God" was the weirdest response he had ever had to a colonoscopy result.

History to be continued. . .

Just starting out...

I have been diagnosed with Crohn's Disease for 10+ years. I have accepted the diagnosis as a part of my identity while attempting to not let it become my identity. This has been my biggest and most ongoing struggle.

As I have been going through a flare up recently - since before last Thanksgiving - I have been attempting to find and develop new coping skills. I have never been a shrinking violet. I have been and continue to be a loud voice for this "silent disease". I tell, educate, and support. I talk about cramps and poop at lunch (with the right people). So this blog - this attempt at a louder voice, is my newest coping skill. An outlet for the struggles of my daily life of being a mom, having a career, attempting to finish a degree, all while coping, surviving and sometimes thriving with a chronic illness. Other than an outlet for communicating my frustrations and joys, I hope to provide support and hope for those who are not as comfortable voicing their struggles. I also hope to educate those interested in knowing and understanding what it may be like to live with and manage a chronic illness. I set high expectations for myself - always. Let's see what I can do.