Hey all, I've been feeling so weird since a bad dream last night during which my husband was having an affair with a friend of ours. We're a family of four and I so often feel like the one who holds everyone else back - when we're eating out, when we're on vacation, car rides, ball games. I'm sure most of you get the picture and can empathize. In this dream, my husband turned to me and said, "Well, you HAVE been sick, having surgery or pooping after surgery for so long now, what did you expect?" I trust him implicitly but I know how much of a drag it must be to be married to someone "with issues". My kids are so attuned to me, they constantly ask, "How are you doing? There's a bathroom over there...." but it can't be fun to have my situation affect their fun all the time. They'll both be in college next year and I must be starting to mourn their departure so, emotionally, I'm all over the map. We're currently on a two week vacation to the west coast, Calif, Ore, Washington and Vancouver. I was on Cipro for the first ten days and felt absolutely fantastic. Now I'm starting to go more, with more urgency, still not terrible but must be going back to that "here we go again" stage. Sorry, so much I'm spewing out here but primarily needed to share that ball and chain dream, UGH!!

I am so terribly sorry Lambiepie, I and everyone else here really do understand...yes, we have all been the 'ball and chain' of our families, holding them back from whatever fantasic activity we thought that they wanted to do...(and yes, even I have those 'he's leaving me/cheating on me/dumping me' nightmares...so far at least that is all that they are...but here is the thing...kids learn a new 'normal' every day..We are their normal...running to bathrooms, not being able to go mountain climbing, skiing or who-knows-what far from civilisation and public toilets with running water and toilet paper...(let's not forget the script of cipro or flagyl!)...but kids know that we do our best, try our hardest and push our limits just to get out of bed some days...they will not resent us as they grow up and move away (we have offered them a richness of comprehension and tollerance that few other kids have when starting university and moving out into the world) and most hubbys (I did say most) stay because they love us, truely and will not trade us in for a newer model with functionning plumbing...mine goes through ups and down with my illness but loves and respects me for not just surviving it but how I survived it and the way I act...if he is upset about anything it is the 10lbs that I have put on!
So go, enjoy the trip as best as possible and make rice, eat bannanas and find a drugstore if possible along the route...you are one of a select group of survivors who is teaching your kids and hubby what true courage really is...
Sharon

Sharon, you are the best. I guess I knew all of that, but it helped to see it and so well explained. Funny, my kids almost deal with the adversity better than my husband, who appears angry when I don't feel well. He says this is how he reacts when he actually is disappointed that he can't help me. He feels helpless (and, yes, discouraged when things don't get better. I tell him that I'll never just "get better", that I take steps back all the time and how must it feel to be me?). Thank you for empathizing, I actually just took a deep breath!

I do not think I could say anything to top what Sharon has already said, she is always so encouraging! But one of your comments really hit me. When you said your husband gets mad.....let me tell you this is exactly how my husband reacts and for a long time it just made things worse because I thought he was mad at me and was the most insensitve jerk ever. Through counseling I learned that it was just like you kinda said. He was actually mad at himself because like most men he felt he should be the hero of the family and be able to fix anyhting. Unfortunately, like you said we are not really "fixable". Me understanding that has made a huge difference in our relationship and how I communicate to him when I am having a problem.

And yes, kids do adapt better to these things, just part of their nature I guess. I hope you enjoy the remainder of your trip...could you call your Dr. and have him call in another Rx for you where you are at? I know my GI will give me a written Rx to take with me on vacation just in case I need it while away. This avoids having to deal with Doctors who don't really know me or my plumbing. Just a thought....

Lambiepie...you are so cute...yes, we are all living with men who get angry, frustrated, mad, dissapointed etc at our situation/condition etc...So What? (yup, I just said it out loud!)...I know men who have left women for weight gain, acne, facial hair and everything from warts to herpies...our guys are kinda special...they have hung in there through thick and not thick enough ...they are entitled to a bit of mad now and then (as long as they don't take it out on you)...baby him, give him some sympathy, tell him that he is still your hero and then ask him to open the bottle of ketchup because he is 'so big and strong'...they need the reinforcement that they are still able to help us even if it is just flipping the stained mattress or carrying the laundry basket for...
I try to get mine to give me a little foot rub or wash my back (he also does toenails...pretty good with the hot pink polish!) and then reward him with a smile, nuzzle and hug...
By the way, some days they really need to get the Mad out...give the man a weed-wacker or a lawn mower and let him loose...they will come back exhausted and happy to have killed the enemy even if it was just wild grass...
Sharon
(by the way, in case of emergency, walk into any drugstore, give them the name of your doc, your medical condition and his contact info and ask them for an emergency script...they will usually do it if they can...I also keep my full medical file and scanned scripts on a USB key in case of such emergencies )
Huggssss

Haha, my husband is the best foot-rubber and he was invaluable during my hospital stays for that reason. My sister (a woman, obviously) was the one I needed when things needed to be done. She wrangled a floor fan and medication out of the staff when I couldn't fend for myself. So everyone does what he or she can and it's all good. About the meds, I had enough Cipro for almost the whole trip and really hate having to be on it anyway so I was kind of happy that it ran out and hoping against hope that my body would just continue to run as well as it had been running. But, yes, bringing the script when necessary before travelling is an excellent idea.

There's a lot of good advice here - thanks for starting this Rant. I appreciate my husband more. He told his brother we couldn't attend his son's wedding which is 2 days driving each way, and the plane tickets this close no way. His brother told him to come without me and it pissed my husband off. He said he didn't want to come alone, plus he doesn't want to leave me here alone. Stupid brother is mad so now he's not coming to our son's wedding. He won't be missed.

Just had to say how lucky you folks are who have kept husband/partners thru all this. My ex ( an Orthopedic Surgeon) dumped me when I had my
first really serious UC episode. Reading about the lasting, loving partners is soothing to my soul. So many of us have lost partners because of illness. Good for you who chose well (tho I know it is not easy). Hats off to you,
sarah

sarahkay - Sorry about your jerk ex. He should have been better because he is a doctor. My cousin's husband took off on her when she got cancer saying he couldn't stand to watch her die. Jerks are hard to spot sometimes.

Sarahkay, one would think that your ex being a surgeon would give him some empathy. On the other hand, maybe being a surgeon, he performs the procedures and then hightails it out of there. I'm so sorry about that. Toughenough, shame on your cousin's husband. People's true colors show when they're tested.

Lambiepie...not sure whether to laugh or cry about your situation with your ex because I, too, was married to a physician who was convinced I became sick because I was angry at him. Can you tell he was a psychiatrist???? Each and every time I had a flare I was accused of being passive agressive and expressing my anger toward him by becoming ill. Go figure! I was thrilled the nights he spent in the hospital because he was on-call. It was easier for him to stay there than to respond to calls all night long from home and more than not, having to go into the hospital anyway!

CeeeeCeeee - I've had people try to tell me I was making my self sick but they were clueless. Your Ex sounds like a narcissist - thinking your illness was all about him! (Sorry I couldn't help a little diagnosing.) He knew better as he was a medical professional. I hope you are better without him.

Sarakay,
I wouldn't want your ex as my doc...no empathy...good riddance...having a partner that sticks around is 1 part miracle, 1 part magic, 98 parts hard work...but the person has to have it in their soul first...I have gotten all of the bad comments: I am doing it on purpose, I only get sick to get out of...?, I use my disease for...?, plus the usual angry infant comments and tantrums...there are days that I wish I could drive to the city dump and drop him in but I don't drive!* (in France)
I have to have a selective memory to stay happily married but I know that relationships are a see-saw and you have to be ready to be up even when you are down...they become the needy child when we are sick and they need reassurance that we are not going to 'leave them' physically, emotionally or actually...every time they wheel me to O.R. and he is around the tears fall...he becomes an abandoned 4yr old...every time that I go away (emergency surgery in Canada) he 'punishes' me with distance and 'I don't need you, I can do it myself' (heard that from our 2yr old g-kids)... but I spoil him rotten when I am well and he spoils me by going 'beyond himself'...washing my hair, doing my nails and making me laugh until I cry (his real gift)...
I never count on anyone...that way I am usually pleasantly surprised.
Sharon

Thanks Lambpie for starting this thread and to those who helped me with your kind words. So many of my friends (who seem to have great health of course) just don't seem to understand the huge battles I (and lots of us on this site) have fought over 14 years. Now I'll focus on getting a guy to do my nails and rub my feet. That is so fantastic and gives me hope that good partners do exist.
Again thanks to all,
sarah

Jeez Louise, there are some lame ones out there. And the physician husbands? Are you kidding me? Ughhhh! That said, there are also some wonder boys (men) who will be real partners and tough it out w/ you. My husband and I met well after my illness and soon after my surgeries, and he's stuck it out and supported me through all the complications. He really is a gem. They do exist!!! Although, I have to say, communication about it is key. The comments about them getting angry/frustrated when you're sick hit home here too. I would just ask him if he was mad at me and he would laugh and apologize and say, "No, I just hate that there's nothing I can do to fix you..." He'd get frustrated w/ the docs, insurance, et al, but it all came from a place of love and protection for me. He also kinda gets SO nervous when I have to go to the ER or have surgery. It's kind of adorable, but I feel for him. I know it's not fun being on the other end of this either.