My personal battle

[Runt]

I can't really say I'm newly diagnosed. I was diagnosed last December and started Elmiron around Christmas time. And made virtually NO dietary changes. Period. Finally, in June I decided to try the IC diet, as I was still pretty miserable.

and saw a DRAMATIC change in my pain level. At least until I blew it camping a few weeks ago and I haven't got it under control since. I saw my urologist mid-August and she said that now that my bladder is "stable" I have to give the Elmiron time to work. But she didn't say how long.

One thing I'm having a particularly difficult time with is feeling like this IC is punishing my husband as much as me. I don't just mean sexually... I mean food-wise too! He loves spicey food and wine and spaghetti and lasagna and all those things that I can't enjoy with him anymore. Do you guys make 2 dinners, periodically? How much of your freezer space is full of frozen spaghetti sauce? Along with being in pain 80% of the time I feel so damn guilty. My husband is AWESOME.

Anyway, those are my whines for the day. Just found out this week that mustard is a no-no (been having honey mustard every day for 3 weeks now and just figured that one out :bonk:). My big fear right now is that I won't have this under control by mid-November when I'm going on a cruise to Israel/Egypt/Greece/Turkey with my 74 year old mother. Thankfully, she has bathroom issues also and understands.

Thanks for listening, all.

Lori
39, Frederick, MD

[neoitvaluocsol]

I totally understand, I got diagnosed like 2 weeks before my wedding. I feel like the poor thing married into this complicated situation, like he had no idea that married life would consist of strict diets, random pain for his wife, painful sex, etc. And we delayed our honeymoon to Hawaii till mid sept because they didn't run cruises during tsunami season(most of summer) . On one hand it's nice because I have a better understanding of the diet, ways to avoid pain, etc, but on the other hand I still don't have a complete handle on the situation and I'm terrified of the cruise because either I stay strict to the diet and don't enjoy all the wonderful foods I paid for, or I don't, feel guilty, and experience symptoms *sigh* Not to mention the day trips joined with the whole frequency thing.

Anyway I think the diet thing helps when you do dishes that can go either way, like pasta. I cook the pasta and he can have a red sauce and I eat a pesto or creamy sauce. Or if I make a pizza, I can make my half IC friendly and his half normal pepperoni(or whatever he likes). For awhile I avoided restaurants, but people here suggested good restaurant ideas so now we can go out and he can order whatever he wants and I can eat IC friendly food. It also helps that at work for lunch he can eat whatever he likes, so I think he takes advantage of that too.

[Julie B]

Hi there!

You are experiencing many of the things we all do after being diagnosed. One thing to remember is that we all have to go through a grieving cycle with this disease (ro any chronic disease for that matter.) In fact, one of the most important things a veteran IC patient taught me was that our spouses and family members also go through this process. In the end, we are all working to a "new normal."

My new normal does include cooking different meals on occasion. On the other hand, if something I make isn't spicy enough, they can add all the spicy sauce etc that they want afterwards! You should see the assortment of sauces in our fridge. :rolleyes:

One of the best things to do is get your family involved in planning meals. This way you can talk about your restrictions in a fun way and you can include different foods for all the members of your family.

As a default, if they want something I can't eat, I will make myself scrambled eggs and toast. I could live on that! :smile tee


PS: I used to live in Frederick Maryland! I was in first grade at the time. There was a park in town with a huge tower, is it still there? Or, maybe it just seemed huge because I was four feet tall? lol

[Runt]

Thanks, Julie. After awhile I'll sit Himself down here at the computer and he will HAPPILY read a lot of these posts. He's very interested and concerned and wants to be involved and informed.




PS: I used to live in Frederick Maryland! I was in first grade at the time. There was a park in town with a huge tower, is it still there? Or, maybe it just seemed huge because I was four feet tall? lol

Yes, Baker Park and the tower are still there. The tower is still huge and looks like this:

http://www.norm.hostned.com/gallery/frederck/Carillon.htm

Thanks again!

[Landish]

but people here suggested good restaurant ideas so now we can go out .

Where I can find these ideas?

[neoitvaluocsol]

Where I can find these ideas?

Here you go :
http://www.ic-network.com/forum/showthread.php?t=59458

[Runt]

Get this. I told you my husband was awesome, right? Well, after reading some stuff on this forum today and posting I shot him a question on AIM this morning, asking him if I was disturbing him at night, getting up to pee a lot. He told me, "no". and then I shot him Julie's reply about "finding a new norm" (which was brilliant and very timely I might add).

As I got off the treadmill at 3pm, this is what happened on my AIM session with Himself:

runtAIM: whatcha need?
DalesAim: hi babe, good run?
runtAIM: well, I decided to do something different
DalesAim: Randi is coming home with me and I am taking you out for Pho
runtAIM: i've been wondering if those women on that website aren't right and that maybe running is bad for my bladder
runtAIM: so I lowered the speed down to 4.5 and upped the incline to 3.0
runtAIM: uh, what time would that be?
runtAIM: and why?
DalesAim: after which we can discuss your feelings
DalesAim: she is coming home with me, so 5:45
runtAIM: well, the kids and I won't be home till 6:20 or so
runtAIM: but we can go then if you like
DalesAim: k
runtAIM: what feelings are you referring to?
DalesAim: about your I.C.
runtAIM: *sigh*
runtAIM: ok

We got out to dinner and he just wanted to discuss the fact that he could tell that I'd been depressed for about a week (been pretty discouraged) and he wanted to let me know that none of this is affecting him. He doesn't miss the foods (cuz when he has a craving he goes out for lunch for a meatball sub or something) and that he has guilt also. He feels bad for drinking coffee and wine in front of me. Isn't that sweet? He just wanted to alleviate some of my anxiety and my guilt. What a great guy. I am so lucky.

Lori

[mcs0425]

You are so lucky!! Got yourself a wonderful, understanding husband. My husband actually found the doctor that diagnosed me by reading a billboard so he's my hero :woohoo: I had actually given up myself after 2yrs but was like what the heck, can't hurt after being in pain so long!
My doctor told me that I can have a no-no meal every once in a while but to make sure to take Prelief pills before hand. They are made by the makers of Bean-O and take the acid out of beverages and food. Caffeine has been the hardest for me to give up but I do have it about once a week (mostly Mondays). Walgreens and Drug Emporiums are about the only place you have find the Prelief. If I feel a flare coming on I take 4 Tums smoothies and they calm it down some as well.
Michelle from TX

[Diamic65]

I know what you talking about being guilty because of having IC. My husband was not so understanding at first. Diagnosed in 2005. Every time I was in pain he shot me a look and ask what did you eat this time? I tried to tell him that it was not always caused by food. When he would come home from work and asked are you pain again today? So I always was on a guilt trip because of the IC. It did not bother him to eat foods in front of me. He would say sorry you cant have this. Couple of years ago we started sleeping in diff. beds because I would wake him up to go pee. Couple of months ago I asked him to PLEASE check out the IC website. Know he is more understanding. Sorry i just needed to vent. now his family understands why I can't eat some foods or when I'm in pain. It took me fours years to get to this point. I know its hard on the family. But its no treat for us to be this way. I'm so glad we have this website. It has helped so much.:angel:
DIAMIC65:bow:

[neoitvaluocsol]

Awww how cute! It makes so much difference when your husband is understanding. I feel lucky because my husband is really nice about it. He always asks before he buys/eats/drinks something to know if it'd be too much torture for me to watch him enjoy it. Also for my birthday he tried really hard to come up with an ic friendly meal(at the time I hadn't been ont he diet for long so he had a small understanding of what I could eat), I know it took a lot of planning for him, and it was just so sweet.

[babybuns]

I was recently diagnosed as well. We know the grieving process WELL.. About 4 months after we were first married (14 years ago) I was diagnosed bi-polar. UGH I felt sooo bad. I had no idea and I felt sorry for my poor husband he married a CRAZY GIRL. He's a trooper though.. Then my mom got dimentia at 50 no less... 10 year decline THEN not even 2 yrs after that my dad had a MAJOR stroke... YOU GET THE PICTURE.. WIFE DRAMA never ends around here lol and now 2 yrs after my dad's illness I GOT IC!!!
He had the role of cooking and grocery shopping and well he's not the best communicator, he'd rather not say anything at all then discuss how I may be upsetting him... WHICH is nice but doesn't work well in all situations LIKE this one. So I felt I was all alone for about a month. Then I made him sit down and talk. So then he got it and NOW is GREAT! It's gets easier he is back to meal planning and cooking 4 nights a week, I cook 2 and then other night we just wing it. He's back to grocery shopping and we're all good. Intimacy is figured out and all is well in my little world.

HANG IN THERE!!! It gets easier.