Seeking any help that may be out there!

[stacyY]

Hello everyone;
Im stacy, 32 years old and have been suffering from Ic now for about 10 years. It was miss diaginosed for 10 years acculy just this feb i got the right diagnosis.
I spend a lot of time in so much pain. and haveing acid reflux, and am on an anti-depressent, and a few other medications.
This year since being diagnosed has been so frustrating to me. I have had one pain after another. And i am missing so much work. Before i was diagnosed i was missing about 2 weeks out of a month cos i was in so much pain. I spent just this month a good 15 days so far in a lot of pain. I have also been recieving the bladder instilations, 6 week treatments and im going for #4 this week. Not sure if its acculy working or not.
A major reason why im so frustrated is due to not being able to work normaly. The only medical help i was able to get, was help threw the state threw FIA(Family Independant Angency). And i can only get some basic care. Lucky though that it does pay for my medication and for some of the doctors i need to see.
But to get this help, I am only able to make 500$/month, not weekly. I have been doing this all year 06 so far. I had some in savings but now Its running out. One thing after another keeps poping up. Yesterday I had to get a new tire for my car cos the other one was beyond flat. All these little expences poping up.
I try to ask for help from family but they say they are not sure to help me. Im getting so desperate for money i have no idea what to do. I am not married and have no kids. I do also get food assistance from FIA also. but some times its not enough also.
Im wondering what some of you do in this situation. Does anyone know of any finacial help out there to help people like us who have medical problems and limmited to working cos of their pains and situation like i have. I even tried last year to get disability cos i was to the point where i couldnt work hardly at all.But iw as denied. If i could get some insurance else where, then i could work full time. But haveing a pre-exsisting conditoon, I have had places refuse to take me.
Im getting to the point where for June i have no idea how to pay my rent. Since i missed 8 days in a 10 day billing period. Its horrible. Im really to the brink to haveing a brakedown i feel. Im so depressed, and alone with no help. I try to hint to family i need help and they just say wish could help but cant. I i tried to ask a few friends but they are also in no position to offer help also.
So if anyone out there knows of any help thats out there i would love to hear about it. I live in the state of michigan.
It is just always one thing after another. I cant seem to keep up with things any more. All the litte ethings are waying me down. Which as you all know, stress make the pain so much worse. I have been in pain now for 3 weeks and its not letting up to much.
SO if someone out there can help i love to hear any advice you all have. Im so glad to have found this site, to finnaly have aplace where others understand exactly what im going threw. I try to talk to others they just say diet loose some weight you will be fine. Which makes me so stressed cos we all know it has nothing to do with it. Or to go get some exercise it will help you feel better, yeah right its hard enough to just sit up and down at times let alone go for a walk. I try to explain to people and they just do not understand.
It was little easyer when i was mis-diagnosed, no medicans, no treatments, and the pain is same as before but now i have all this other stuff i have to worry about. Im sorry to complain I know most of you have days like these too where your so frustrated. and feel like you just cant keep up with life. Thanks to all of you who will listen to this and have any surgestions.
take care everyone.
thanks
stacy

[kuntrygurl78]

Your post brought tears to my eyes. Im really sorry for what you are going thru. First being diagnosed with this horrible thing, then stuck between the balance of having health insurance and a job and having money to pay for all of the other stuff in life! I do feel for ya! A few years ago, I was at my whits end financially. (This was before IC diagnosis). I was lucky tho. I asked my grandparents if I could live with them, and they said yes. I dont know what I wouldve done without them. None of my friends or my parents were in any shape to help me out.

For your loved ones who tell you to do the diet, exercise thing: I have found very few people that I can talk to about my disease. That's why I love this community. My friends/family dont understand. I know it's not their fault either. I think in their hearts they want to help and make me feel better. They dont have this so they just dont know the right things to say. Maybe by saying something, anything, is their way of letting you know they care.

All I can say is pray! There will hopefully be someone here who can help you with the financial aspect of this whole ordeal. Maybe talk to your doctors. Oftentimes they know what direction to point you towards. Im sure they encounter people in your situation. Also call your county or city govt. There are so many programs at the local level that many people just dont know about till they ask. Good luck!:hi:

[jaime15]

I'm not sure, I know that isn't the answer you are looking for. We have all been there at one time in our life. I actually stretch out my elmiron supply cause I think it's ridiculous to charge so much for it.

I hope things fall into place for you before long. We truly care here and know you have a listening ear pretty much 24/7........take care............:grouphug:

[stacyY]

Thanks to you both for your suport and for listening. Sometimes it just helps to talk out the worries. I wil tryt o look up to see if the gov't have anythiong available. But so far not found anything. But I will keep trying. thanks for all your kind words.
Best wishes to everyone.

[Annie2]

You might also try again for disability. Now that you have a definite diagnosis of IC, you might have a better chance. IC is a diagnosis that does qualify people for disability benefits.

[stacyY]

Thanks For the advice i think I will talk to my doctor tomarrow about that. I wasnt sure if that was even possible to try again for. BUt I really appreciate the advice. thanks dear.

[2flyingdogs]

Hi Stacy,
I completely understand what you are going through. I had been laid-off two months prior to my diagnosed (not fun). I had no money, was in constant pain, depressed and had no one to depend upon. I don't know of any great words of wisdom, but I do know that things will get better. I don't know what programs Michigan has, but maybe you would qualify for some sort of state or city funded program to help with the medical costs. Also, you might try local colleges and hospitals to see if they have any IC programs going on that you could participate in. You will be amazed at how many strangers are willing to help. Most hospitals have someone who is an expert about federal, state and local assistance programs. Also, most pharmaceutical companies offer coupons or some sort of discount for low-income patients. Finally, most pre-existing condition clauses only last for 30-90 days, so you might be without insurance care for IC for a while, but it should not be forever. Please double-check the policies to verify this. I have seen some that would never pay for pre-existing conditions, but it is rare.

Keep your chin up and remember that you are not your disease and that you are a wonderful person with a lot to offer! This website has been a blessing to me, at least I know that I am not alone and/or losing my mind. :-) Let us know how you are doing.

[stacyY]

Well yesterday i had my 4th instillation. Which was not to good. I really think they are starting to make the pain worse and not better. The nurse said she never had a patient react the way i am with the instillations. So next week I have to go again, but, they are not sure if i will recive any more. Seems now my bladder is not emptying compleatly the last 2 weeks. Last week After going tot eh bathroom before hand, then 20 mins latter they used the catheder, they got 10 oz. This week same thing, only I was just waiting 5 mins, and they got 12 oz. ANd the pain is not going away. I really do not see how this is helping me. The only differawnce is that the urine is now pretty clean instead of chunks of blood in it. which i guess at least thats something.
But after the nurse injected the medication, I had horrible cramps. Today when i go tot he bathroom, afterwords i am also haveing really bad cramps, been mostly resting.
It never burns or anything like this just horrible pain and cramp feeling. I didnt get to talk with my doctor this week, hopefuly next week i can see her. All my doctor said for the pain is to take motrin, and prydiam when i need it. My other doctor gave me vicodin-hydrocodone, but she told me to not take if cos its to adictive of a drug. But i still have some and it at least takes the edge off, Nothing seems to 100% take it away. I have tried so many differant drugs, with little or no help, or allergic reactions,like to perciset.
Well i have been sitting up for 30 mins i need to lay down again. I just wanted to really thank you all for ur advice and kind words, I really need hte suport, i truely have nobody else. Sometimes it just helps to get the words out of my head, so i can then think of something else. Thanks again. Take care everyone.

stacy

[stacyY]

Hi everyone;
WEll today i had another visit to my urologist. And Got all checked out again. MY good ness thisis the 5th week for the instilations. But my doctor decided probbaly not worth it to get it done, since the pain is stil there, and there is really not much change at all. Except the urine is clear, othter then that, the pain is still been the same.
So the doc was well, so now what do we do with you.l Like I would know. But was cute none the less. So once again I am haveing the cystiscope with hyd. done in June. I hope this time it helps m ore longer. Its only been since Feb 3rd since i have had the 1st one done. The doc said its not good to do it to often but since i have had constinat pain, for the whole month of may i belive, she thinks its worth a shot. She didnt do the 1st one, so may be best if she sees 1st hand how it acculy looks inside.
Have any of you not had any luck with the instillations.And how often have some of you had the bladder distentions done? I am little concered to have it done so soon since it will be just 4 months since i had it done. Do any of you have it done more often?
I am so glad for this month to be over. I have been in pain every day of this month. I am really feeling depressed over it. Seems no matter what i do ,dont do, nothing seems to help at all. Last night i was just sitting here, and in a daze, i am so overwelmed right now. I know it comes and goes in spurts, but a whole month is little much for me to deal with.
Its also frustrating since the doctor wants me to try PT, and a pain center, and my insurance will not cover things like this. Its like no matter what i do i dont win. But im not going to just give up compleatly also. I know if i do not push myself to do daily things, it will jsut take over me compleatly. Which is n ot what i want. I think this IC could totaly consume me compleatly if i let it.
I just wish to be a little normal, that wouls be so great. It probably wouldnt be sp hard if i had some one to help me. But since i am alone, and not much help from parents unless im desperate and even then seems i am alone, more then not. Then i think some days when i just need to rest its kind of nice to not have to deal witha guy, or kids or anything. Its probably a good thing i am so stuborn and thick-headed.lol...other wise i be worse off then i am not i think. :smile tee
I hope all of you are doing well and have more good days then bad! Thanks for letting me vent out. It really helps me a lot and i appreciate all of your worse and surgestions. THANKS EVERYONE!!!!
stacy