I've been in and out of the hospital a lot the past two and 1/2 years, and I've got many more admissions ahead of me. I've had admissions as short as four days, and I've had admissions as long as three and a half months (that was supposed to be an overnight motility study). They usually range around one month. Over the past year, I've spent more time inpatient than out.
I still play the trumpet and piano, and I try to get out when I can. I write most of the time along with drawing. I love to be creative, and I love to do a lot of engineering. I try not to let this illness get me down.
For those of you who have not met or seen me in person, I am just about more tubes, tape, dressings, and silicone than human! I have a gastrostomy tube (for draining the stomach), a jejunostomy tube (for minimal feedings and meds), an ileostomy, a mucus fistula/colostomy, and I go through central lines like crazy because of the infections. I've had 17 PICCs, 2 Broviacs, and 1 tunneled IJ. I'm very grateful for the central lines-they are what is keeping me alive.
The purpose of this blog is to point out all of the good things in life right now. Keeping a positive attitude and a grateful heart are vital to surviving and coping with a chronic illness. I hope you find strength from this blog kept up by me and Mom. Thank you for your love and support!