I was supposed to go home this morning but my counts weren't high enough. They rechecked them at 2pm and my white cell count was 1.1 and my platelets were at 23...just enough to be sent home. Unfortunately, because they keep bouncing up and down, they've kept me another night atleast. They want to monitor me. They have to make sure i'm safe flying home. Even though I know thats right and safe and it's what I have to do, i'm having a discouraging day. I'm getting homesick and frustrated. But I know God is keeping me extra days for my own safety and when I finally get home, i'll appreciate it so much more. I'm having a rough time with the hair loss...bald...*shudder* but I'm trying to stay strong and see it as a symbol of my strength and recovery.
It's emotional for me to consider what i've been through over the last 6 years since my original diagnosis on March 27, 2007. A date i'll never forget. A date that changed my life forever...and honestly, for the better. When I was first diagnosed, I'd never even heard of Crohn's disease yet it was destined to alter my way of life forever. I was in and out of the hospital at first and trying every medication under the sun. By my senior year of college I was going to infusion centers every month and giving myself injections every other week. I managed with different meds and steroids until the summer I graduated with my Master's Degree.
Then the recent flare started...3 years ago...and it was relentless. As time went on, I had to stop going to parks or on walks, working out, going to movies or to bars with my friends. No one understood why I couldn't do the things they did. On top of it, I was battling moving from place to place, being homeless, trying to find a better job, dating an alcoholic, abusive boyfriend for 2 years, before finally moving back home to live near my family. Once I moved, I started a better job but was forced to take medical leave after only 3 months because of my Crohn's. I did break up with the boyfriend when i moved, hoping the stress relief would help some of the medications work better for me. Unfortunately, they didn't. I continued to worsen with daily fevers, chills, vomiting, diarrhea, bleeding, excruciating pain and cramping. My life was spent in the bathroom and throwing up in trashcans and plastic bags in the car. In October 2011, I was hospitalized and put on TPN and had blood transfusions. I was hospitalized several times after that as well.
In September 2011, I read a blog that had all of Dr Burt's information about the stem cell transplant for Crohn's. I knew it was a long shot, but my only other options were traveling internationally for risky hookworms or a full colostomy. Something I still could not be prepared for. I printed all the research I could find, took it to my doctor and told him to refer me. To my surprise, he agreed and immediately sent my medical records to Dr Burt for evaluation. By December, I was finally able to go to Chicago for my first evaluation. My blog explains the rest.
Thank you for reading and keeping up with my progress. And I promise I will keep updating as everything progresses.
God is staying good to me and keeping me strong. I couldn't ask for more.
