Thanks so much for the kind, inspirational and comforting words. I do work and I have been trying to go to work every day - my job requires self-motivation - no one gives you things to do or timelines to meet - you pretty much set your own goals and work on them. I used to be really good at this. However, right now, I sit and stare at my computer screen, and can't find the motivation to do anything. My husband really is doing better than he was 2 weeks ago - he's not in pain, he's tolerating a low-residue lactose free limited diet, he is not having any blood in his stool, and he is starting to put on weight (3 lbs in the last week). However, while I acknowledge all those facts, I still can't focus on anything but the immediate and the distant future. He's on 80 mgs of pred (40 in the am, 40 in the pm), Remicade - he has a skin rash from the meds, and I worry it's something more than just a rash (like Lupus - though it doesn't look like a Lupus rash, and it doesn't hurt, or itch). He's on flagyl and vancomycin for keeping the c-diff under control until he can taper off the steroids, and he's got foot drop - I think it's because of the flagyl, but the doc says he can't stop taking it - so we have to see neurologist, and hope his movement comes back, and also hope that it's only peripheral neuropathy and not something more serious like MS (his aunt suffered with MS for a long time). I worry that the pred will hurt him - he's likely going to be on high doses of pred for the immediate future.
As for the long term future, I worry about lymphomas caused by the meds that he's taking, liver damage, future flare ups being worse, facing surgeries, stomas, fistulas, obstructions, strictures, losing so much bowel that he becomes malnourished . . . the horrors are just overwhelming. I know I should not worry about them, and face them if and when they arise, but my head just won't listen to me. I've always obsessed over things, and caused myself more anxiety than needed - but this time, I've just paralyzed myself with fear and anxiety.
I am glad you guys are here, to give me some perspective, and to help deal with my fears. BillyLitt, I am so sorry for everything you've had to endure, and I thank you for "But those of us who are healthy must find the strength and courage to do everything you need to help your loved ones." I hope to find this strength and courage, but at the same time, I also hope to find some enjoyment of life, not just enduring each day, but able to find some enjoyment in each day. I think Belleenstein, you should write a book about your experiences, and your perspective on life - you write beautifully, and yes, I'd pay money to read it.
Our employer has been fantastic to us - they've allowed my husband to just login and work from remote, and they've allowed me the same flexibility. I know I need to start being productive again, both for myself, and for them - which is why I'm talking to the therapist, and trying to get my brain to function somewhat normally again. Hopefully, I'll get on the right track soon. In the meantime, we've made some decisions that should help us live a low-stress life - we were going to move to a new job, but we've shelved the idea, given how wonderful our current employers have been. This also means we don't have to go through the stress of selling our house, etc. Through this ordeal, I've really come to understand that "health is wealth". We've decided to just be happy in our current jobs, and not let work ambition bring stress into our lives. We have everything we need financially already to live happily (at least in terms of finances). And our situation here is such that, if my husband is unable to work, I can support us on my salary. So, we have a lot of things to be grateful for - having a job that lends us the flexibility of working from remote - be it the hospital or home, wonderful employers who have gone out of their way to do everything they can to keep stress away from us during this nightmare, and also our doctors have been great with us - they've worked hard to help my husband avoid surgery.
Wow, you guys really are fantastic - for the first time in over a week, I've actually feel a little more positive about life, rather than tumbling down the black hole of despair and fear. I will make and keep my appointment with my therapist. I may be back and I may need more shoring up, but I thank you so much for being here and for taking the time and effort to lend support to me.
Hugs to everyone,
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Home now after being in hospital for 45 days
Canasa, Lialda, Vancomycin, Flagyl, Colestipol, Pred 80 mgs, Remicade (3rd infusion due 5/22/08), VSL#3, FloraStor
Still having problems, hoping for a remicade miracle
Need to get off the pred ASAP