DON'T GIVE UP!!!!!! FIGHT FIGHT FIGHT! even though you just want to lie down, even though you sometimes want to die, even though it just hurts so much you want to bite and scream and cry. because the alternative does not bear thinking. and do scream if you have to, cry if you have to, get a punching bag and beat (or bite) the proverbial (insert expletive of choice here) out of it if you have to.
I haven't yet lost all that which makes life wonderful. and I will keep fighting!
some tricks that have helped me: or "what I have learned while hating my guts!"
1. Only take the wicked narcotics when you have to (or maybe I should say, when you get to.otherwise, I take Nyquil, and Tylenol p.m. I know, I know, they aren't morphine but then again...they aren't morphine! when they don't touch the pain I go to the emergency room. thus far I have not found doctors willing to give me narcotics on a regular basis. I don't know if I'm glad about this or not. I'd like to say I am glad, but sometimes it would be so much easier to have the wicked narcotics, but they do make me really queasy and only work for about a half hour.)
2. search out and find a good doctor who will listen. sometimes this takes forever but it's vital. if the doc gives you the "duhhh it's all in your head" look or speech, smile sweetly, put some copies from this site on his/her desk and walk out. your efforts to convince them will only bring you to tears or anger...do not projectile vomit on the doctor...errr...from experience this just never works;) I have a wonderful doctor who does listen but he is a bit leery about being free with the narcotics...
3. keep your sense of humour...it'll gradually get a bit grim (your sense of humour that is...as you know the rest of this stuff just gets grim period.) but hey...laughter is pretty good medicine. occasionally hurts like hell but good medicine. (unfortunately, sometimes, narcotics are better medicine...)
4. you're going to get to know your body realllllly well, a little too well. you may need surgery, you'll probably know when you do. ask for the barriers. I have had ARD pretty much my whole life and from reading the site it looks like there's alot of the different strokes for different folks. some people aren't helped by more surgeries, some are. like everything else in life there is no "one thing works for everyone"
5. if it works, do it!!! if it kinda works, do it! yoga, praying, hot water baths, running, staying out all night with friends while dressed like a pirate. (don't ask) if it takes your mind off the pain, cultivate it! if it makes life worth living HANG ON TO IT!!!!!
6. also...just knowing that the rest of you are here and that I'm not in this alone, it has made all the difference. I learned about the barriers here and had them with my last surgery which was for gastric bypass (not for obesity but for bile reflux disease and yes, had some more adhesions removed) they were able to do it laparoscopically (poked errrr quite a few more holes than just my belly button but then again...I no longer have a belly button because of all the surgeries...it's true, I am a belly buttonless freak and I'm ok with that!)
7. Friends and family may not always "get it" in fact they may never "get it" but they do their best and they love you. I learned so much about selflessness and love from my folks and my husband. sometimes watching them watch me go through this is just crushing. and sometimes it's what makes me swallow my tears and paste on smile and get back up to fight. because that's what this is. it's a fight. we're fighting our pain, and a world that doesn't yet wholly recognize ARD. so love those who love you and change the world if you can!
8. ...and really chewing my food (30 times) and not eating raw fruits and vegetables or popcorn...sometimes this helps with cutting down on bowel obstructions. I was using a colon cleanser that really helped but after this last surgery bad things happened when I tried it again.
-- any other suggestions or hints or helpful tidbits??? bad jokes? please send them my way!!!! thank you:) Karynn