a question for the long-termers

Ivy...you seem such a strong, funny, intelligent woman...though a half a world away, and under no sense of obligation, and alas, though the world of computers, care about how you are doing...and I hope not to be to presumptuous...cuz sometimes, even here, I feel the outsider...but I wish you well.

I guess, what I am trying to say, and not very elegantly, is that there is someone who does care about what happens to you...As stated in other posts and previously...I would like to help...and not just empty words...

*sniff* Thank you, both of you. Undone, your post struck a chord and I really appreciate what you're trying to say. I find the limitations of this forum very frustrating too. Thank you, very, very much.

Bonnie, who said that they felt as if they were doing all the work?! That's horrible. I'm really, really sorry you've had to deal with that. Funny, isn't it, how most people can't understand that, for us, even getting out of bed and getting through daily life can be a supreme act of courage? "Not trying hard enough" - ha.

Anyway, thanks, both of you.

I.

Yeah. It stinks, doesn't it.

I.

You can find my email address in my profile . Don't worry if I don't answer immediately - all the mods are pretty overstretched atm - but I will try answer soon if you do write

Sorry to bring up an old thread, and I'm not a CD'er or long-termer. But I've had UC for two years and I feel the same way as Fitzy and LMills--I have a couple of "friends" that I can talk to about tv shows or go to the movies with, but not a best friend (hence the fact that no one outside of my family knows about my UC). Even my parents aren't all that understanding; I usually get "stop thinking about it" etc. Even before UC, I was always the friend that cared about others and was loyal, but when it came to me needing help, no one stepped up. I wish I could have the ideal best friend, but I'm convinced that I'll be a loner forever.

I'm really sorry about your fiance, Daisy.

I don't have Crohn's, but my husband does - since I guess around 2002, so we're not quite long termers. I hope you'll forgive me for posting here. Ivy, my heart goes out to you, for having to deal with this terrible disease all on your own - I wish I could give you a hug. (((Hugs)))

As a caregiver for someone with Crohn's, I think that it takes a strong emotional bond to hang in there with the lows of the disease, and the suffering that it brings, and the uncertainty and fear of the future that a chronic incurable disease brings. Even though I love my husband, I was so distraught watching his suffering, and I feared the future so much, I almost walked away - until I had a heart felt conversation with my mom (who also suffers from a chronic incurable disease). She told me that there is no escaping suffering, it will eventually find us all, and to take each day as it comes, and live for each day.

The trauma of my husband's illness and hospitalization, and my soul searching during that time has changed me profoundly. I find that I am a much more compassionate person than I used to be. In the past, I would hear about someone's illness, and I would feel a momentary sadness for them, but then, life would go on as normal for me. I would perhaps send them a get well card, or go visit and take them some flowers. I would offer my help and support, but invariably it would never be asked for - I think because I didn't _show_ my support, I offered it and left it up to them to _ask_ for it.

But now, when I hear about someone's misfortune, my heart really does go out to them, because now I know how it feels for them. I know how grateful I was when my husband and I were suffering so much, for those friends who came to talk to me, give me a hug, bring me food, offered me a place to stay so I wouldn't cry all night at home alone . . .

So, now, I go out of my way to try to do something when someone I know is suffering. Instead of offering to help, I just do. I take food, or I give hugs, I call them frequently, I offer my presence, I listen, and I make sure they understand that they an talk to me about anything - there are no taboos, no bodily function or offensive thought is going to cause me to judge them. I've been there, I understand. I do my best to give them my time, my affection, and whatever physical labor I can do for them, and whatever cheering up I can do. And in doing so, I have enriched my own life, and made it more fulfilling.

If mine is any example, I think there must be other people like me out there with you. People with personal experience of suffering, who know what you're going through - these are the people who will offer you support, who will lend you their ear, give you a hug . . . this is my belief, based on my own personal metamorphosis. Are there any local support groups that you can join to get in touch with other people who maybe able to offer you more than a superficial friendship?

My parents live in India - and skype has been wonderful for me, it makes me feel so much closer to them. It puts me in their living room, and them in mine, and we have a wonderful time talking to each other - and it's free! I highly recommend it - when all else fails, nothing cheers me up or fortifies me as much as looking and talking to my mother. If you have a close friend, who is geographically distant from you, I very highly recommend using skype.

(((Hugs)))
PV

Thanks Ivy. I wish brighter days for you too.

Daisy

HI, Ivy. While I guess I can consider myself a long-time CD patient, I was in my forties before I was diagnosed. (I am 70 now.) I suppose I can say that my marriage was a casualty , but it was not in good shape anyway, and I think that if I had not gotten sick, my ex and I would still be married, but both of us would be miserable. I needed to be on my own. Now we are on much friendlier terms; my daughter and two grandsons were living with him and there was no way I would miss being part of their lives. Now I have a three year old granddaughter, too, and, once, when I was visiting she said to me, "Memaw, you have to meet my grandpa." I said, "Yes, we've met." Anyway, it hasn't been as hard for me as if I'd been in my twenties or thirties when it was discovered. I have lost a few friends over the years, but I have remained close to some, and my sister-in-law, with whom I am now living, is very supportive. I am closer to her than to my brother, but he is good to me, too. I must say that finding this site was a wonderful outlet for me, and even though I post less frequently now I am still very grateful to all the members. It helps so much just knowing that I'm not the only one who experiences certain problems, both physical and emotional. This is like my home away from home, a place where I always feel welcome and one that I miss very much when I don't get here. You are always in my prayers, and I am especially glad to connect with YOU again. I guess one thing I can say is that getting old is easier when you've felt old for half your life anyway. :) May you find comfort and understanding.