Howdy ya'll! I've been sitting here an hour trying to figure out how to explain my concerns, so I'm just going to throw it out there, please excuse any hard to follow parts.
Ever since I got sick with CD.. I have had a huge problem finding and keeping a job. First job after I got sick in 04, lasted two months. Was going to alot of doctor appointments trying to figure out what was wrong with me at the time (ended up going from 140 to 90lbs). Couldn't hack it anymore. I didn't work again until 06. Had that job until the beginning of 07, laid off due to lack of work. Found another one right afterwards, had that job until the beginning of 08. Then my rib literally popped out of place and they fired me for having to miss days (wasn't there a full year, so no medical leave act). After we *kinda* got my rib back in place, I found a job working with my dad for a fiber optics manufacturer. LOVED this job. Twelve hour night shifts on my feet but I LOVED this job. Then in Sept. of 08 the joint pain started.. followed by the gut pain, CD was back. I ended up on the abt 874 trial, which I'm still on, but I've had so many issues since. I lost my job in Feb. They said I was laid off due to lack of work.. but I know I was further down the totem pole due to being sick again. Since the lay off I've been on sleeping meds, anxiety/depression meds, migraine meds, and did my time with the pred again.
Then everything started to get sunny again! The infusions were starting to work (on open label now). I was still extremely tired all the time but my blood work was looking good, my CD score was down to 77 and they stopped infusions. I was so happy, I thought I was going to be okay for awhile, even started some college courses. But no, almost three months and it's back. My research nurse said that I did good, the longest anyone has went without an infusion in the trial was four months, but it's so depressing. I'm afraid to look for a job now, I know how I feel most of the time, and lacking energy is hard enough to push through. Add massive amounts of pain and D, throw in some horrid joint pain, I don't think I can do it again. I really need to be able to make it though, I have two kids who need me to.
I guess my questions are.. How? How can you do it? Can hard work start a flare? I feel like every time I push myself at anything, all these medical issues pop back up and I lose it all. Before my rib popped out I was working seven days a week, I was making it. I'm by myself with two little ones who I adore and I want to show them I can do it but I don't know if I can anymore. I've been in a relationship for a year and a half with my very caring boyfriend and if it wasn't for him I wouldn't have a roof over our heads anymore and I hate it. I was keeping the roof over our heads and the clothes on our backs when he met me. Part of the reason he fell in love with me was because I was so independent.. and now he's watched this DD come and kick everything out from underneath me and I hate it. I know I am extremely lucky and blessed to have someone here for me, I know this.. but I hate it. I've read so many inspirational stories of how so many of you pushed through it all. This site is full of people who just do it. So how do you? Because I don't know if I can. I want them to see me push through this, I need to know how to deal.
I'm sorry for my wall of text.