I don't want to live like this. part 2

[jenjen05]

First off I'd like to thank Donna for closing my original thread. Why my original post and discussion turned into that nonsense arguing I have no idea, since it really had nothing to do with my original post or point. Though I respect the passion with which you all made your points. I honestly feel like I got attacked which I don't appreciate but will let go because I don't think anyone meant to personally hurt me, though it did. I would appreciate it if the topic that was argued over would NOT be brought up again in this thread. My original thread was written because of my pain and depression and I went to post in it this morning only because I'm feeling that way again and found that I was unable to because of everyone's need to rationalize a point that was rather pointless to even debate. :mad:

I cannot go to a pain management specialist because I have no medical insurance. I cannot let the government/insurance companies know I have IC until I can find a full time job and get medical insurance and then I can go wherever I need.

I am not eligible for Medicaid. I was told its because I have too many assets. I have 10,000 in stock and own three cars. A 2008 Toyota Avalon, 2003 Acura RSX, and a 2001 BMW 330ci. Only the Acura is actually mine. I co-own the BMW with my boyfriend, but the car is in his possession. And the Toyota is my mom's car, which had to be put into my name in order for HER to get Medicaid. (She has had cancer twice and has chronic, chronic, chronic health problems of many, many different kinds. And the cost of her medical bills BY FAR outweigh mine any day.) Only two of the cars are really considered assests because the Toyota and Acura were purchased outright for my mom and I by my Grandfather.

My Grandfather has spend well over 10,000 on my medical bills in the last three years. He told me he can't afford (though that's a bunch of :cussing: ) to help me out anymore. Truth is he has more money than God himself and could very well help myself, my mom, and my whole family over and over and still have tons of money left, but he refuses. He's 86 now and he's grabby and greedy, as many elderly people get. Oh well. I can't begin to tell you how thankful I am for my car, my private college education, and the medical bills he has paid for me. I don't know where I'd be without him right now. I guess I just know how much he could help me and the rest of my family and it makes me sad that he's too greedy to do so.

My urologist finally gave in on giving me Vicodin ES after getting a call from my Grandfather and a visit from my mother. (He used to date my mom when they were in their 20's and is a friend of the family). He was only willing to give me 30 every 3 months, which as you can imagine is nearly gone after one month.

I'm going to see another urologist in Largo, Dr Katz, on July 11th. I've seen her before and I respect her, but at the time I didn't want to believe I had IC and that's why I went for the 2nd opinion from the family friend.

But to get back to the point of my original post some moons ago...

I was doing really well there for awhile. Just when things were getting slightly better after the stress and emotional induced flare from my mom giving me a scare by being in the hospital with a serious infection/new blood clot/swollen leg....

I now have the worst flare ever.

I don't normally flare or have pain with sex. My boyfriend is very understanding and compassionate and we both try our best to avoid Ms. Bladder and whatnot. I guess we should have been happy with our 1st successful, no pain sexual encounter today and left it at that. But my *smart* self decided we should totally do it again. (I hope this isn't TMI.) And we did, took all our usual precautions... and at some point it felt like he hit my bladder three quick times. I made a awful face apparently and said "Ahhhh! Stop!" which he did, and the poor guy looked like he was gonna cry. I thought I'd disappointed him. As it turned out he didn't care but was really worried about having hurt me. I'm not sure if we (really I, since I'm the one who came up with the bright idea) was too ambitious in thinking that two times in a day was a good idea OR if it was the three whacks to my bladder OR what....

Blah. Anyway, I don't even know what to do anymore. I need a full time job and medical insurance bad. I often wonder how long I'll be able to stay strong for. I do my best to keep the faith and believe that this will get better. But as it turns out I'm much better at encouraging others than myself. I guess that's probably true for many of us on here though.

Today is just one of those days where I cry on and off all day in bed with the heating pad and my doggy. It's just one of those days I never want to leave the house and stuff. I just don't know how to make this work. I went on the IC Rescue Diet from the "Confident Choices" book but to be honest I don't even feel like eating. I forced myself to have some scrambled eggs and toast this morning. And I'm forcing myself to drink a ton of water. How boring when I really, really am jonesing for a Dr Pepper. Oh the Dr, I miss you so!

Tomorrow I decided I'm gonna go out for 4th of July in spite of my pain and Ms. Bladder is just gonna have to deal. I am a Florida girl, darn it! I will wear my bikini and party on the beach with my peeps! The beach is literally two minutes from my house, just a quick bridge trip to Madeira Beach. Were going to Treasure Island though, because there's an awesome place called "Caddy's on the Beach" were going to.


Anyone in the Tampa Bay area beaches for the 4th? Give me a PM or friend me on myspace and join my friends and I!! I'd love to meet you.

Wow this was a novel. Sorry. I'm a writer and sometimes I feel the need to over explain how I feel and whatnot. Take care everyone and I hope ya'll are feeling better than I am today! XOXO

[dyno]

Hi, IC can be so frustrating at times. Sometimes sex won't hurt and the next it will. Just be cautious and deal with each situation as it comes. I also am without insurance so I know how tough it is. I keep hoping something will come up that I can afford. So far it hasn't happened.

Hang in there and just realize it takes time to figure out what will work and won't work for you.

[ophelia33]

Hi, Jennifer,
I'm sorry the other post took a turn for the worst. I'm glad to see you are still posting.

Have a wonderful July 4th. I used to live in Clearwater for only a year about 15 years ago. It is a very beautiful coast.

Sending you hugs and wishes you get the care you need,
Ophelia:hi:

[jenjen05]

Thanks for the replies.

I'm really depressed again. Saw a new Uro and yet another Uro who refuses to give me narcotics. I am in so much pain. I sleep an hour or two a night. Only thing that's changed is I get 1mg Vallium vaginal suppositories now that don't do anything. She says I need to keep using them but nothing is happening. I called her office and left a message to ask if I could have a higher dose to try, and she's on vacation and I won't get a call back for four days. Ugh. So much pain and it never ends. I can't take this anymore. I need a freaking break! My god. I'm just going through cycles of depression. One minute I convince myself I can do this and the next minute I just wanna go to sleep and never wake up. Life is not worth living like this. It just isn't. I'm 24 and I'm not going to do this the rest of my life. I'm just not.

I need a full time job and medical insurance now. And a urologist that will give me pain meds or be willing to give me a pain management referral. My friend Jenn just found a great pain managment doc for her back and she asked and he sees IC patients, all I would need is a referral that no doctor is willing to give! Ugh even if I could get a referral I'd have to wait till I have medical insurance so I won't have a pre-existing condition then and insurance that'll cover me going to pain management.

I just want to scream and sleep! Scream is my only option!!!!!!!!!!!!!!!

[ICNDonna]

From reading your posts, I am assuming that you have already been diagnosed with IC --- so you already have a pre-existing condition.

When you get that job and go on a group insurance plan, pre-existing conditions would be included in the coverage. Group plans are the only way to get coverage unless your state has a program available --- in Oregon there is one, but it is extremely expensive.

Donna

[jenjen05]

Actually, I don't have a pre-existing condition. I definitely have IC and have had all the tests (seriously, lol), just no medical record to indicate that I do. The urologists I've seen have been friends of the family and at the request of my Grandfather (a former MD) and my mother (a former RN) I have no patient record or formal diagnosis in any way that could get back to an insurance company, or anyone else for that matter. They did that for me so that one day I could get insurance. There should be no paper trail at all of me having IC.

Also, I have a friend in Boca Raton, FL who got a job after graduating from college (the year after me, in 2004) and she had never had insurance before either. The job was with Morgan Stanley/Smith Barney and was a group plan through United and they refused her coverage of IC claiming it was a pre-existing medical condition. If anyone does know the name of any group plans in Florida that would take it as a pre-existing condition I'd be interested to know the names of those companies.

I am also wondering after reading a Q&A with Dr Daniel Brookoff (sp?) if perhaps I don't have IC and actually have a redundant/prolapsed colon. I have asked repeatedly for a standing x-ray or MRI of my abdomen and pelvis but everyone says its unnecessary. Probably because my actual bladder pain started September 2008 and I had a laproscopy the following month. But the lap was to diagnose endometriosis, which I didn't have. And I was laying down, which from what I understand would "hide" the redundant/prolapsed colon. Anyone have thoughts on that?

Just a note to Donna:
I really, truly appreciate all the posts and knowledge that you provide. You are always very kind and patient with all of us here. Thank you very much for all that you do! Many hugs and much love to you.