New member and partner of a newly diagnosed IC'er

[peet]

Hi,

I just wanted to say hi and introduce myself as a new member. My partner was diagnosed with IC about a month ago and we've been learning a lot about IC together. I am so glad that she has had this support group and she has had such great things to say about it that I thought that I should look into it as a form of support myself, especially with other spouses who so desperately want to help and support their loved ones.

It is so hard to see her in so much pain. I certainly feel as though I can support her and help with foods and finding bathrooms but I think that the pain part is the hardestespecially frustrating.

Anyway, I am glad to see other spouses/partners here and look forward to talking with more of you and other IC sufferers. Already it has been helpful to see the feedback from other IC'ers about what things they find helpful. Obviously the more I know, the more I can help.

Glad you all are here!
Peet

[SharonA]

:welcome: Peet...

We are glad you are here, too. Your support is very important. It can make a big difference in your partner's treatment and state of mind. You are to be commened for coming here. There are spouses of IC patients who post. I am sure you will hear from them.

:) :) :)

[Sarojini]

:welcome: It's great to see you here -- it's so nice to hear that you are supporting your partner this way, as support of a partner/spouse/etc can really make a difference for the IC patient!! Please read the site as much as you want -- there are lots of useful tips here for both you and your partner!

[patricia1]

Another :welcome: !!!! Having a supportive spouse/partner is so very important for the person dealing with IC. Not only does it affect her, but it also affects you as well. It makes me smile just knowing that you want to learn and help her as much as you can..Take a look at the patient handbook on this site. It has so much useful info in. Praise you, I wish there were more people like you out there :angel:

[Dixiefireball]

:hi: and :welcome: to the ICN family. sorry about your partner having this but a great way to help her is to look threw the icn handbook at www.ic-network.com/handbook this will have some diet idea's for her treatment plans she may can try etc. Go with her to all doctor appt. listen and ask question.

I think its so wonderful that you care enough to help her you such a sweet person she is lucky to have you.

sending you both hugs and prayers
Rhonda

[trytosmile]

Welcome to the gang...

It is so nice to see spouses getting actively involved in trying to learn as much as then can about this illness.

You will make such a difference in the healing process mentally, physically and emotionally.

All the best to you both,

[traceann]

Just wanted to add one more :welcome: to the bunch! You have come to the right place for information and support! There's tons of it to be found around here, glad you found us!!

Hugs,
Tracey :)

[peet]

Hi all,

Thanks so much for all of your messages welcoming me. I feel very supported (as has my partner) by this board.

Any suggestions in how to help support her day to day I think will be the most relevant. I am reading a lot and will go to Drs appointments with her, support her dietary limitations, etc, but what I have found the most informative are the tips on the day to day ways that you all have indicated to be helpful. I know that one of the challenges of this disease is it's unpredictability and that can really be hard for both the sufferer and the family & friends. The ways in which I can help her through the dramatic swings of pain, success, sadness and joy will really make the most difference I think.

So let me know what little things make your day and help you through all places in your day!

Thanks again,
Peet

[traceann]

Hmm, let's see. The things that I appreciate the most and that help me the most.....I would have to say, it's nice when my sweetie takes over for an evening in the meal decision and prep. He knows what I can eat and can't, so it's nice to not have to think about it or worry about it for a day, I know he has it covered. I also love it when he'll ask me how I am feeling, he's gotten to the point where he knows if normally chatty me gets quiet, things are brewing, lol. It's nice to know he's aware of what's going on and is willing to help me out -- mix up some baking soda and water, etc for me. Fielding the "friend's dinner requests" too, like for example when we are asked to go out for pizza (oh No!!) he'll suggest a different place to go eat, one that I can find something safe and tasty off the menu --- so I don't have to always be the one saying "oh, sorry can't eat that" to our friends. Really takes the pressure off of me of always looking like the fun-stopper. That helps sooo much. Makes me much more relaxed and in turn I end up feeling better in general! And just plain old listening to me complain without trying to fix it -- sometimes you just can't and it's nice to be able to cry, vent, rant, rave -- whatever. That can go a really long way!

I am sure I will think of more and you will get lots of info like that from everyone, hope this helps a little!!

Take Care!
Hugs,
Tracey :)

[windwalker]

Hey Peet, welcome to the group, lets seee, my hubby, although he learns most about IC through what I tell em, when I am flaring, he gets my heating pad, if I am not in a "leave me alone" flare, he will sit w/me sometimes rub my feet, kinda gets the mind thinking of something else. He will do more around the house, he already does a lot. If hes not sure what to do, he will just plain ask if he can get me anything or do anything.
Glad to see you are very supportive, she'll need that :)

[Michelle in KC]

:welcome: :welcome: :welcome: :welcome: :welcome:

I wish my hubby went online to chat with other IC spouses!

:) Michelle in AR

[peet]

Hi All,

Thanks again. Your tips are all very useful!

I was wondering...how long (if ever) did it take for you to feel as though you had a handle on the disease? I don't mean in terms of "solving" or "beating" it but rather in terms of feeling like you had learned the parameters for how to cope for you. I know that this disease is frustrating in its lack of predictability but I wonder if it gets any easier once you have a better sense of what works for you. What foods you can and can't eat, what meds work and when and what is most likely to case a flare up. Once you have a better handle on that, does it help? How long did that take?

My sense is that this is a long journey but that the first year we will learn how to handle things, what works and what never does. What we can and cannot do or can and cannot eat. Already it seems as though we have learned a lot but it seems like there is a long way to go too. Any thoughts?

Thanks,
Peet

[Michelle in KC]

I;'m still learning. You never stop learning of new things that you should or should not do. I know I can't eat chicken enchiladas. I do anyway, and pay the price of pain. (Oh, but it tastes soooo good at the time) I learned that if I over do it for my activity for the day I am in major pain soon there after, ot even later in my activities. (I volunteer at kindergarten, I am a rodeo Mom of 2 kids, I have riding lessons and so forth to get the kids to, I teach Sunday School, ... etc. ) IC makes me feel very delicate and vulnerable. I did not used to be this way. I was "Super Mom", with girl scouts, a full time bank job, a part time library job, volunteer in the community, and a softball coach. Now, I am IC Mom, who always has to pee. It's a fight for the bathrooms when we get home from somewhere. :-) Just support your wife, understand that things WILL get bad at times, but they do get better at times, too. She may be in bed for a week in pain. Please PLEASE take care of her and pick up the slack around the house. Even if you are "house-ignorant" ask a good friend or your mother to help you for a day. Support her and tell her how much you love her no matter what. You're a good man. Michelle in AR

[traceann]

Yup, me too -- still learning. But in terms of confidence, it took me a few months. Now, I generally don't fear the tell-tale signs that I either ate something or did something I shouldn't have. I know it will pass -- that alone helps me cope. I know that I may be hurting or uncomfortable now, but it will go away eventually with some rest, strict eating and possibly some of pain meds (I just use OTC Motrin and/or AZO Standard or Uristat) to keep me comfy until it passes. But in the beginning, every twinge, pain, up in frequency freaked me out completely -- which probably made it wose and stick around longer than it would have if I had just relaxed and gone with the flow.... But in terms of learning my limits? I am still learning!! LOL! :) Like using the ATV to plow the snow out of the driveway this winter not a good idea -- although it was fun, I paid the price the next day! ;)

Hope this helps a little!!
Hugs,
Tracey :)

[daniela stokes]

hy peet, nice to meet you, my name is daniela and i am a new member, i was diagnosed with ic 2 month ago. i take the cystoprotek and it seems to ease some of the symptoms. you said the desease is unpredictable and that is true. when i feel good my husband and i go for walks and really try to get as much out of the day as we can. we also take motorcycle rides or go out to eat and enjoy each others company. now, on the bad days i just want to be left alone but i think yuo are really doing more than any other husband in your situation. take care and i hope this helps. daniela Hi all,

Thanks so much for all of your messages welcoming me. I feel very supported (as has my partner) by this board.

Any suggestions in how to help support her day to day I think will be the most relevant. I am reading a lot and will go to Drs appointments with her, support her dietary limitations, etc, but what I have found the most informative are the tips on the day to day ways that you all have indicated to be helpful. I know that one of the challenges of this disease is it's unpredictability and that can really be hard for both the sufferer and the family & friends. The ways in which I can help her through the dramatic swings of pain, success, sadness and joy will really make the most difference I think.

So let me know what little things make your day and help you through all places in your day!

Thanks again,
Peet