Newbie with no support

[JanSPI]

Hi to all my fellow IC sufferers. I was diagnosed with IC about 6-7 months ago. I have tons of Mast cells and suffer greatly when I flare up. I am currently flaring again, with horrible bladder pressure, frequency of urination, bad back pain in lower region, and this endless feeling of being tired. I do not take any prescription meds for the IC but do take pain meds. I watch my diet religiously, but this is the second flare up in a few months. But worse than the flare up is my husband, who does not, nor will not, offer any support. He just told me a few hours ago that he "wants me just to be normal." He does not understand, nor is willing to learn, how horribly this disease affects me. Unfortunately, he wants the perfect spouse who is healthy and perky 24/7. I am not used to anyone not being able to offer comfort, caring, sympathy, and understanding to others. Of course, this makes my stress level go through the roof. I was eating some bland soup for lunch, and he started in on what I should and should not eat. His "diet" had nothing to do with IC but rather with a diet that he thinks will help me lose weight (now mind you, I am 5'11" and weigh 145 pounds and wear a size 6), and I told him as much. I am going to see my doctor on Tuesday and will seek more options (my doctor has told me of several options, none that I was willing to go through at the time). Are there local support groups nationally for IC? Thanks for listening and I hope everyone out there has a pain free day.
Jan

[Agape]

I have no idea how old you are, but I guess it really doesn't matter where husbands are concerned. My husband is having a hard time since I've been diagnosed with IC are am about to be diagnosed after one more test I'm sure. I've had bad health off and on for the past seven years, ever since my hysterectomy. I think he thought when I had that, that would be the end of my problems and I would feel and act great. Well, it didn't happen. He pretty much leaves me alone and spends most of his time working outside the home, so he doesn't have to deal with me at all. I know what you mean about needing some compassion. A hug would be nice and some understanding or at least saying that everything will be okay (even if it is a lie). I really sympathize with you.
Now for your other question, I don't know where you live, but you could possibly check with your local hospital about a support. I know I live in Georgia and have recently found out about a support group meeting this month nearby. Hope you can find one. We all need someone who understands and will offer us some help.

[kadi]

Hi Jan,
Here is a link to a post about support groups in the US. Hopefully you will find one for your area.
http://www.ic-network.com/forum/showthread.php?t=30094

I'm sorry your husband is not supporting you; this is a pretty common thing, unfortunately. Not just among husbands, but among confused family members as well. Remember, you can always come here & we do understand! Hang in there, hopefully as you find treatments that work & start feeling better, things will get easier.
Sending a hug & wishes for better days soon-

[leelee88]

(((((jan)))))
Sending you a hug..:angel:

[JanSPI]

Kadi,
Thank you for your kind words. I will ring the SC contact person tomorrow. In the meantime, I am really restricting my diet in hopes of some temporary relief. One post asked how old I was, and the unfortunate thing about that is that my husband is 60, and I am 51; he is old enough to know better is my point. But as the post noted, age doesn't matter; everyone should be kind and thoughtful and caring. Regardless, at this point, I simply ignore his ugly and hurtful comments rather than engage in confrontation. You really cannot teach an old dog new tricks (especially one who is not interested in learning). I am a type A personality, and as such, will continue on despite the pain and the discomfort and my Draconian husband. So many sent me kind words, and for that I am happy and grateful to have found this site. I hope you have a simply glorious day.
Jan

[JanSPI]

Agape,
You are so kind to offer words of comfort. My husband and I are older, and one would think that someone who is 60 would have learned through life, somewhere, to be kind and sympathetic - that is not the case with my husband. He is retired (but I still work from home - I telecommute), and he has plenty of time to look after me, but no, he plays golf 7 days a week, comes home and wants dinner, and he can't for the life of him figure out why I can't fix it. Two nights ago I was in my pajamas, curled up on the sofa in the TV room in complete and utter pain. He came in the TV room, yelled at me "well, I guess I will have to eat by myself" and slammed the door!! I ignore him for the most part, as I am tired of confrontation and the stress that arguing brings. I will ring the local hospital tomorrow and the SC IC contact person that Kadi sent to me. I really need to be around those who understand what I am going through and whom I can speak with. Thanks so much for responding to my post and have a wonderful Labor Day.
Jan

[Agape]

Agape,
You are so kind to offer words of comfort. My husband and I are older, and one would think that someone who is 60 would have learned through life, somewhere, to be kind and sympathetic - that is not the case with my husband. He is retired (but I still work from home - I telecommute), and he has plenty of time to look after me, but no, he plays golf 7 days a week, comes home and wants dinner, and he can't for the life of him figure out why I can't fix it. Two nights ago I was in my pajamas, curled up on the sofa in the TV room in complete and utter pain. He came in the TV room, yelled at me "well, I guess I will have to eat by myself" and slammed the door!! I ignore him for the most part, as I am tired of confrontation and the stress that arguing brings. I will ring the local hospital tomorrow and the SC IC contact person that Kadi sent to me. I really need to be around those who understand what I am going through and whom I can speak with. Thanks so much for responding to my post and have a wonderful Labor Day.



Jan


Jan: We are about the same age. My husband is 65. He doesn't ask me to do anything, but I know he still doesn't understand what I am going through. He pretty much just leaves me alone and I am made to feel like a burden to him. I told him I might have to quit my job and he said that way okay because he could work 7 days a week. That was not the answer I was looking for. He has health problems too, but is self employed and if he doesn't work then we are in major trouble. I really want to continue working, but I teach children and need to feel at least 90% well. Right now, I sure don't. Hopefully there will be light at the end of the tunnel. I'm still praying every day for myself and others on this board. Keep in touch.