Hi!
My name is Jeff Parker. I used to post here as "parkles", but my account was deleted because the moderators thought I was a robot.
After some e-mails and questions, I'm back on the boards with a new capital letter in my name!
Here's my story:
I was diagnosed 10 years ago, at age 18, just a few months before I began my studies at UCLA. I lost 30 pounds in a short time, and had to drop out of school in my first year. Prednisone had driven me crazy, Pentasa was ineffective, and I was getting sicker and sicker. However, after being put on Remicaide in 2000, my health got a lot better for a while.
In 2001 I was hospitalized and had laproscopic surgery. In 2003 I graduated college, and in 2005 I was hospitalized again. By this point I had been on methotrexate, 6-MP, Xifaxan, Sulfur pills, Charcoal Pills, Probiotics, and Entocort.
In 2008 I switched to Humira, finished graduate school, and moved to New York, where my health got bad very fast, and I was forced to move home last week.
I have terrible insurance that won't cover most Crohn's Medications (Humira, 6-MP), but still costs me 500 dollars a month.
I recently had a hearing for Social Security benefits and am hoping it goes through. Right now I'm back in California (Central Coast), looking for new doctors, better insurance, and hoping fresh air, sunshine, and organic food might help me end this series of flares.
I'm a proud member of CCFA and love doing the walks/runs, and I got to spend one glorious summer working at the Painted Turtle Crohn's Camp in California, which was one of the best times of my life.
Before I got sick, I was a professional singer/dancer. I studied acting and continued to sing in college, and have been able to work intermittently as an actor/singer during my periods of remission. Currently I'm trying to go back to school for a teaching credential and find some steady Educational Theater work to provide health insurance for myself and my soon-to-be-wife, Nicole.
Meditation, Reiki, and Yoga have been wonderful tools in managing this illness for me, along with breath work and the attempt to remain positive, and surround myself with things that make me feel better (trees, sunshine, the ocean, good music, etc.)
Thankfully, since I'm in California, I've also been able to use Medicinal Marijuana to great effect during my worst times. Although I'm not currently using it, I do highly recommend it to anyone who doesn't know what else to try. It's very helpful in the short term.
It's been quite a struggle, with issues of depression, guilt, fear, inadequacy, shame, embarrassment, pain, and anger. In spite of the illness, though, I must confess to having a beautiful life with a wonderful woman, a great cat, incredible parents, and a support system that has been there for me.
I know I'll have questions, and I hope that I can help out all of you with anything I can offer, whether it be stories or support or advice.
My name is Jeff Parker. I used to post here as "parkles", but my account was deleted because the moderators thought I was a robot.
After some e-mails and questions, I'm back on the boards with a new capital letter in my name!
Here's my story:
I was diagnosed 10 years ago, at age 18, just a few months before I began my studies at UCLA. I lost 30 pounds in a short time, and had to drop out of school in my first year. Prednisone had driven me crazy, Pentasa was ineffective, and I was getting sicker and sicker. However, after being put on Remicaide in 2000, my health got a lot better for a while.
In 2001 I was hospitalized and had laproscopic surgery. In 2003 I graduated college, and in 2005 I was hospitalized again. By this point I had been on methotrexate, 6-MP, Xifaxan, Sulfur pills, Charcoal Pills, Probiotics, and Entocort.
In 2008 I switched to Humira, finished graduate school, and moved to New York, where my health got bad very fast, and I was forced to move home last week.
I have terrible insurance that won't cover most Crohn's Medications (Humira, 6-MP), but still costs me 500 dollars a month.
I recently had a hearing for Social Security benefits and am hoping it goes through. Right now I'm back in California (Central Coast), looking for new doctors, better insurance, and hoping fresh air, sunshine, and organic food might help me end this series of flares.
I'm a proud member of CCFA and love doing the walks/runs, and I got to spend one glorious summer working at the Painted Turtle Crohn's Camp in California, which was one of the best times of my life.
Before I got sick, I was a professional singer/dancer. I studied acting and continued to sing in college, and have been able to work intermittently as an actor/singer during my periods of remission. Currently I'm trying to go back to school for a teaching credential and find some steady Educational Theater work to provide health insurance for myself and my soon-to-be-wife, Nicole.
Meditation, Reiki, and Yoga have been wonderful tools in managing this illness for me, along with breath work and the attempt to remain positive, and surround myself with things that make me feel better (trees, sunshine, the ocean, good music, etc.)
Thankfully, since I'm in California, I've also been able to use Medicinal Marijuana to great effect during my worst times. Although I'm not currently using it, I do highly recommend it to anyone who doesn't know what else to try. It's very helpful in the short term.
It's been quite a struggle, with issues of depression, guilt, fear, inadequacy, shame, embarrassment, pain, and anger. In spite of the illness, though, I must confess to having a beautiful life with a wonderful woman, a great cat, incredible parents, and a support system that has been there for me.
I know I'll have questions, and I hope that I can help out all of you with anything I can offer, whether it be stories or support or advice.
good to have you here, and it's lovely to read the positives in your story, despite some pretty heavy negatives!
