Tired of feeling this way

[Michelle in KC]

I hurt so badly. I have for almost 2 weeks. Sometimes I just lay down all day. Other times I have things that I just HAVE to get done, pain or no pain.

I am seeing my URO this afternoon. He is trying to put off any surgery (cysto & hydro or whatever) for as long as possible, due to lack of insurance. He sees me for free. It's the hospital that would cost big $$.

I don't want to be like this anymore. I want to be the 'normal' wife I used to be, and the normal Mom I used to be. Now it's my husband doing everything for the kids, and I am either laying in bed, or at least on it, or laying in the recliner. I want to take the kids on the boat this weekend when my Mom is here. I want to be able to help at school. I want to be able to help out more with youth group functions.

Instead, I live for moments of little or no pain. Those times are getting fewer and fewer. Is this what I face as I get older? Will I just get worse and worse?

I am not old enough for this. I am only 31.

:toilet: :toilet: :toilet:

[ICNDonna]

Is there a state funded program in your state for folks who can't afford medical care? You might talk with the Social Services department at your local hospital to find out. I hate to see you in pain if a hydro would help you.

Sending warm hugs,
Donna

[aantol73]

Michelle,
I feel the same way you do. I too am only 31, a wife, a mother of a 19 m/0 and 15 weeks pregnant. When my pain gets so bad, then my depression kicks in, b/c I don't feel like a good mom or wife... some days I just cry.
Wish I had an answer......

[RedLione]

Michelle, it's highly unlikely that you will get worse and worse, and very likely that you will find a way to have a normal life. There was a time when I was afraid my life was always going to be like that, but it's not. I didn't have insurance when I was diagnosed and my uro's nurses helped me find aid. It has been 15 years but life just keeps getting better. I hope your wonderful doc gave you something for pain. When all else fails, I take a nap. It really does help!

[ICLori]

Wishing you the best, sweetie, and I am confident that you will find a treatment soon that works for you and gives you your life back. I know suffering with the pain is hard, I'm at that point now and wondering what to do next, so I can understand where you are coming from.

But I know that 99% of IC'ers get to where they are comfortable almost all the time - so I believe you will reach that stage too!

Blessings, Lori

[Sarojini]

Michelle :grouphug:

I'm so sorry you are going through this. I do think talking to the social services dept. like Donna said might help. Sometimes they can come up with ways to help you even if you don't have any insurance....

I really hope you can work something out... I hate to see you in pain!!!!!

:grouphug:

[tired of this]

I'm 36 and have had this *(%&#$$^ disease now for 5-6 years that I know of. Diet has been the only thing to help me. Hope you feel better.

[Katrina]

Michelle, I so hope you feel better....I know how you feel...back when I was a kid with colitis that would basically describe me....how could I get so sick...why can't I be normal again? Believe it or not....that time I did get mostly normally again eventually.....It can happen even when it seems like your body has completly fallen apart. It does take time....but it also takes faith....I will pray for you!

:grouphug: :grouphug: :kiss: :pray:

[Michelle in KC]

Well, no surgery scheduled. Still.

He's put me on some other meds for a week or so to see how I do on them.

And ~

He's told me that I need to file for disability. He said "You don't have a choice".

Well, I guess that's the kick in the butt I needed. He is right. I need to do this. At least with disability, I'll qualify for a medical card and then I can have surgery.

Thanks to all. Prayers still needed. The pain is horrible.
Michelle

[sweettabby]

I too thought my life was over when this first started. I sure wish when I was at my worst I had known about this site. However, with my urologists help and Gods help I got better. This disease usually does not progress. I think you reach a plateau and it doesnt get any worse. Its a real bummer, however dont give up hope. There is a treatment out there that will help you. :angel: