Significant Others

[vivsmom]

Hi, So in the spirit of sharing I wanted to talk about my dear perplexed husband who has never seen his wife cry as much as I have in these past three months.
While I was not flaring after work I was feeling exhausted from a full day of work at a busy hospital and my return to my family.
He reminded me I was doing "too much" for my IC and need to be patient in this process. (I can't I'm in pain) and that when our two year old sees me cry so much it can be "disturbing".

I felt a little out of control but counted to ten taking deep breaths. (How dare he-he doesn't know how this feels!)
In these moments I think )"oh no-is is always going to be this way-What else will happen to me?")

We talked later and I thanked him for his views and concerns. He says he feels 'helpless" and we know that is scary for a spouse. After my daughter was tucked in- I medidated did some yoga and took a bath. We joined together for a movie and held hands.

I'm not my IC, I can still make goals and plans that move in the direction of my hopes and dreams and will get there with my loving husband.

Joslyn

"you must be the Change you want to see in the World" Gandhi

[Bojana]

I think many of our partners feel like your hubby. I know mine does although so far I prefer to cry my eyes out in private. My man sometimes thinks also that I do "too much" for my IC and that it will be better and I feel like him when he says that I need to remind myself that people who do not have IC can never really know how bad it is, specially because it is not "visable", they do not know the pain and the insanity of non stop urge to pee even if they see you. So I take a deep breathe as well and just remind myself to be grateful that he is still with me and not running other direction

I see in your list the things you do, do they help you?
I take few of the same things so I wonder if they work for you?

"I am not my IC", this is something I am still working on it, I need to remind myself often that I am not my IC

[vivsmom]

Bojana,

Thanks for the encouragement. Sounds like you have a very special guy, too! That is something to be grateful for today.

I started the instills about 4 weeks ago. I was doing heprin and lidocaine at first and the last two were with elimron and pyridium added.

I do get relief for about 5 days after and have no pain if I'm sticking to the Diet. I think PT is also very helpful. Wekly she is working on my interior (ooh) muscles and external muscles, plus she is a angel!

Actucally need to update my profile to add Vaginal Valium 10mg and Vericare 5mg. The vaginal Valim helps after a long clenching day and the Vericare seems to help as well.

Had a phone consult with Diana Brady of ICN who suggested the supplements and I am working with a chriropractor on diet-I'm eliminating dairy and glueten this week. i don't know if the supplements are working *their magic* but I know that my back end got a little happier once I added more fiber in my diet and probiotics!

I have not started elimron yet, my MD is a little more cautious that the other partners in her group. One MD said "I just throw everything at it and then pull back"!!!! I trust that she is just taking this managment cautiously.

Cystoscopy is scheduled for next month. I think my MD though I might be "healing" a little faster, but I'm thinking that this journey might take a little more time. How jumblingling this can be.

I talked to an IC crusader and "I am not my IC" really stuck in my head.

What has been working for you?

[Bojana]

Yeah, I guess we do need to be thankful for good men in our lives, I think battling IC alone might be even more stressful.

Well nothing has been totally working for me. I was managing my IC for a year - not in remission, not even close, but it was enough to go on with my life, going to school etc. But for weeks now I am worse again and it seemed like I was almost back to square one, so darn frustrating.

Since I do not have elmiron here and I am not really ready for instills, specially with limited succes here, I am looking into it more from holistic point of few.

I had few ok months where I was able to go off vesicare and atarax and just managing with diet and herbs, but I am back to it now. I just hope it will work again soon.

I also started gluten free diet and I am lacto intolerant, so I need to be careful with that as well. I am looking into body ecology diet too. Just in general I need to really stick with good healthy eating, IC diet, very limited food choice.

I don´t have much pain (knocking on the wood)just burning (just? amazing what we can get used to ), my main problems are frequency and urgency, insane feeling of urge, need to go all the time.

I guess I will stuck to diet for now, taking atarax, vesicare, elavil and herbs and fingers crossed I can get better. I am also researching what to take instead of CP because CP and AV are so expensive for me ordering them from abroad.

[judy45]

You have a very healthy attitude! My husband is not very understanding about IC. He gets irritated if I have to take prelief when we go out, and he HATES if I have to ask any questions about the food (I tell waiters and friends I have severe food allergies). I too worry about my kids seeing me sick and tired all the time, and taking so many meds! The younger ones probably don't notice that. But I have to say, I stick to my guns and I am doing much better. We all have bad days, and quite honestly, we deserve a little self pitty. It is nice your husband is so supportive. Good luck to you.