Losing hope.

[Dreamlove15]

Some days are better than others, but most days my life pretty much revolves around this disease, this pain, this IC. For the past few months, i've been really good about trying to stay positive and not beat myself up for this. But the past few days, everything is just going wrong...I feel like there isn't anything I can do to feel better right now. I don't have access to insurance, I have doctors that want to perform the interstim on me BUT ONLY IF I HAVE MEDICAID...which is out of the question because I was denied within 10 minutes of applying. I've tried all the medicines they've GIVEN me...ditropan, vesicare, atarax, pydridium, and then the Elmiron, which just had to be something im allergic to it since it gives me rashes and makes me itch like no other. The clinic that I go to does not do instills and so thats out of the question. I just dont know what to do anymore. Not to mention the fact that I may have Lupus as well because my blood work came back with a HIGH positive ANA. I just want to scream, I want to know why this is happening to me. I am 23 years old and everything was going good for me. I was about to get my associates degree and transfer to OU., work on getting my BA in psychology. And now im stuck...filling out ssd papers trying to get some kind of help so I can get better. I dont want any of this to be going on. I want to work...I want to be able to just live...I want to be able to go out with my friends and not have to talk about why I look like heck...or hide the fact that I havent slept in days...that im in pain just sitting there. I hate just having to put a fake smile on my face and act as if my life is ok because its not. I dont even remember what it feels like not to feel pain...Im sorry if I sound like im wallowing...i know there are lots of people who have had this disease forever...and I shouldnt be rambling on like this....sorry. I just dont know what it is like not to have the feeling of someone pouring acid on my bladder......I feel so alone...but im not. I know im not, i just want to push people away because no one understands what im going through...I lay in bed with my bladder throbbing and then when im sleeping its about the only time i feel alright. My body feels like a train wreck and its so tired...this pain is really taking a toll on me...I just want to cry...I dont know what to do...my mom keeps saying things will get better...just have faith...i think I lost faith a while back...somewhere on the 10th ER visit...i dont even know who I am anymore...i feel useless....

[GriffsMommy]

I'm so sorry you're having such a rough time. I just want to reach out and give you a :grouphug:
Being in pain all the time really does wear you down, alot of us know that. There are times that you feel like it's never going to get any better. Believe me, I'm on tons of meds, do instills, take pain meds and some days I feel the way you do becaue I still don't seem to be getting better. My pain is a little bit better since my dr changed my pain meds so that's an improvement. Are you on pain meds on a regular basis? I didn't read your signature before I hit reply. If not it sounds like it might be time to ask for a referral to a pain management clinic or find out if one of your dr's is willing to prescribe pain meds on a regular basis. Nobody deserves to be in pain all the time.
I do know what you mean about putting on the happy face, sometimes I even have to do that with my husband. Just grocery shopping and driving to the discount clothing store and shopping for clothes for hubby's new job was enough to make me feel like crap but I didn't want him to feel bad so I didn't say anything.
From what you read here most people do seem to find the right combo of meds and therapies as to where they are feeling better on a daily basis, not completely back to normal but a lot better. I really hope that will be the case for you. :grouphug:

[ICNDonna]

I hope your tomorrow is better.

:grouphug:
Donna

[mlzippy7]

I am sorry you are having a hard time. I hope things get better for you soon!

[Berkshire Road]

It's okay to let it all out here. This is a safe place. :grouphug:

[ltlmiss]

Hey call me because my computer is down for awhile, im sorry you arent doing so well. Get better!:kiss: Seriously if you need to talk to someone, CALL ME!

[jenrobhen]

:grouphug: I totally understand how you feel. IC is a very lonely condition. It's a Saturday night and instead of being at my friends' engagement party, I'm stuck at home with a heating pad because of my latest DMSO instill. Feeling hopeless is a very normal emotion, but please remember that you are not doing this alone. We are all here for you to vent to at any time. I will pray for your health and peace of mind. :pray:

[SharonA]

(((Hugs)))

[donnadb40]

I just wanted to say that I am so sorry that you are having to go through this at such a young age!! I am 42 now but my IC didn't start until my late thirties. I don't handle it very well now and I know that it would have been even more horrible to try to deal with as a young adult... You have your life to live (as we all do) but your life is supposed to be filled with fun: dating, dancing, eating, studying, going out with friends, etc. and I know that if you feel as bad as I do, you don't feel like doing ANY of those activities!!! I am like you in regard to all of the meds! Can't take ANY of the traditional meds to treat IC and I am allergic to almost ALL PAIN MEDS!!!! They make me itch so badly that I claw my skin.. Sometimes, i will choose the itching over the pain but what kind of choice is that to have to make????? Well, anyway, its possible that you might want to seek out some counseling to help you with this... I will keep you in my prayers!!! I just remember this quote that Matthew McCoughnahey (don't know how to spell it) said his dad told him on the Oprah show just before he passed away: "just keep living".....

[jen48446]

If you are able, get your hormone levels checked, mainly the estrogen & progesterone, if you have an imbalance, it can cause many, many issues including nutritional deficiencies. It took me nearly 20 years of trusting my instincts, being ignored/dismissed by doctors, researching websites & reading books to figure out what I needed to get myself into remission. :angel::smile tee:cat:

[kellymh]

I think feeling alone and within yourself is the hardest thing about this disease. I go through it everytime I get really bad. Somehow you have to pick one positive thing in your life and focus on it, not easy. I cry alot when I am in a bad flare and think why me! Your not alone, hang in there, tomorrow may be better. I will pray for you that tomorrow is pain free.

[jesamyn]

Sending pain-free hugs and positive vibes your way..

jesamyn

:pray:

[gtg728]

I am so sorry to hear about your constant pain. I know the feeling. I think the work up and the trying so many drugs to no avail are often what depresses us the most. I have had IC for 6 yrs now and I guess the one thing that gets me thru is to focus on one positive thing in my life....just one. Often not an easy task when I am in severe pain. Keep researching and if your clinic is not open to different treatment methods is it possible to find another doc? Sending you love and prayers across the "thread-waves" :) Cynthia