IBD Advocates: Why Amber Blogs
Ulcerative colitis (UC) had completely consumed my life. Day after day it was a struggle just to roll out of the bed in the morning. I’d dealt with flareups before, but this one was different. This one was stubborn. I’d reached my breaking point. I had to get out of this. I needed an outlet. I started sketching.
I had been flaring for about a year. We threw multiple rounds of steroids at this flare but no matter how high the dose, how long I was on the medication or how slow the taper, every time I’d get down to 10mg, my flare would come right back with a vengeance. How do people live like this?
I started a new medication six months previously. It didn’t help. We switched medications again, but by this time, I was ready to give up. I was already an introvert, so being sick all the time didn’t help at all. I was at war with my own body and I felt like no one understood me.
My mother has Crohn’s disease, but she was living a full life. My aunt, too, has Crohn’s, but she’s doing alright. What was wrong with me? Surely I wasn’t alone. I saw videos of people living with Inflammatory Bowel Disease (IBD) online, but I still felt very desolate. Who could I turn to?
I was sinking into a deep depression. I had completely abandoned all the things I enjoyed doing. I was six months away from becoming a black belt when my disease hit and UC plundered that away from me. The disease was causing a deep rift between me and my husband of two years. He married me after diagnosis, but when we vowed to be together in sickness and in health, neither of us dreamed that it would get to this point.
I was constantly exhausted. Prednisone ravaged my body. The aching joints, the moonface, the hairloss. Not only did I not feel like myself with the insane mood swings, I didn’t look like myself either. Who am I? Why is this happening?
Day after day I took my medications. I changed my diet. I was on every prayer list from here to Timbuktu, but I wasn’t getting better. I never became suicidal, but there were times that I prayed for death. I found no joy in my life anymore. I searched for hope, but couldn’t find it. I questioned everything I’d believed in. I even questioned my own sanity. Am I really that sick or is this just a lie I’m believing? After all, I’m not in the hospital day in and day out… Am I really in this much pain?
I went to work every day. It was a struggle, but I did it. And thankfully, I was given the freedom of working from home if things got too bad. One day I was carpooling to work with my husband (we worked for the same company at the time). I wasn’t happy with my job, but I was getting paid. Not everyone with chronic illness can say that.
“Yeah?” Dave replied.
“I think I want to start blogging about ulcerative colitis.”
“If you feel like you need to, do it.”
When I got home that evening, I grabbed my sketchbook and a pencil and began brainstorming. All my emotions and frustrations flooded onto the page with every stroke of the pencil. The war being waged on me by my own body came to light and I began to free myself. Free of the iron fist that is IBD. I decided that I’m not going to go down without a fight. I stared down at my sketch. A tiny ninja was staring back at me. She was perfect.
With the help of that tiny ninja, I took my fight to Twitter, Facebook and Blogger. I typed in the hashtags and was instantly connected with several other people who were going through the exact same things. The more people I connected with, the more support I found. Dave, my husband, had always given me support, but this was different. It was empathy. Something I desperately needed but didn’t realize that I needed it.
When I first began blogging, it was for therapeutic reasons… but as time went on, I realized that there were so many people out there like me who needed exactly what I did. No one should feel alone in their battle. No one should feel ashamed. No one should feel the despair I felt. Colitis Ninja rescued me from despair that day, and has been helping others ever since. That is why I blog.
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