re-posting here...HELP...no other options

[verdicries]

i am re-posting this here, too...in the hopes of more responses and advice. i'm that desperate.

settle in, this will be a long one.

i need help desperately and until now have kept this mostly to myself...but i cannot any longer.

my big flare started dec 2 when i decided i didn't want to get my period. took the next pack of pills w/o the placebos. i'm ASSUMING this is when it started, it seems to much of a conincidence. the pain and retention SKYROCKETED...normally when i flare, i don't flare on my period (i just didn't wnat to deal w/it) and i pee more. THIS TIME, my retention was almost COMPLETE. not even pushing on my bladder helped...the pain was so severe i've thrown up several times.

i tried lyrica and unfortunately had the horrid side effect of shortness of breath, chest pain, severe (even worse than normal) joint pain, and FEVER (this is VERY RARE...BUT DANGEROUS). so that was gone. every other pain med causes retention. and here's the kicker. this is worse than the flare issue: INSURANCE WILL NOT PAY FOR ANY TREATMENT. in fact, they are KICKING BACK CLAIMS FROM AS FAR BACK AS APRIL...they are sick of my claims, but I NEED HELP. doc has written 100s of letters, called, etc...i have called, hubby has called. i need a nerve block for surgical scar tissue (haven't even TRIED to have sex since...oh...september maybe??). want to try urgent pc, botox, and interstim (interstim is a MUST. retention of urine and bms...). they keep sending in letters and insurance "reviews" them (and then claims they never got the info, it's not necessary, etc). they approved my pt claim, i started to go, and then BOOM...my explanation of benefits says they need office notes, more info to "review" the claim. i am shaking as i type this.

i have NO TREATMENT and severe ic (wish i had my pics to show you...i almost passed out when i saw it)...as well as a host of other medical issues...which keep multiplying. i have tried all the meds i can (after getting insurance approval on some, like flomax). insurance keeps kicking back claims wanting "more info". i GET them the info and still nothing. they only JUST paid for my july surgery...after 5+ months. after collections agents were hounding us. we have NOTHING, I MEAN NO SAVINGS LEFT...

to put it in perspective as how LUDICROUS insurance is being...i had several mris in APRIL. doc wanted to make sure there was no problem there that could be causing my retention. very smart. so i went and had them done...assumed they were paid...2 weeks ago i get bills for over $500 from the docs saying where is payment?? so i looked @the bill and they had submitted my claim numerous times, denied. ONLY ON NOV 15TH did it come back as "denied, more information needed. need office notes on why this was done". THEY ARE DELIBERATLELY going back to EVERYTHING i've had done and nitpicking it. i am sure they are tired of paying (HAH! like they've really paid much)...but i am tired of being sick and tired of them telling me what i need and don't need. i have barely left the house in almost 2 years...and am on the verge of a breakdown. i CANNOT continually deal with pain, frustration, a 15 month old, AND yelling/fighing with insurance. i'm sure the stress has increased my flare...starting to have wicked panic attacks again too. need an antidepressant but none seem to fit me...need counseling, can't afford it.

i have the interstim trial scheduled for jan 8 (my b'day is jan 7...gee happy b'day to me). we are waiting for a letter of approval from insurance on that and other things. still havent gotten it, apparently they also faxed it to doc's office for monday (which is bad now...cause i'm @the point where I WANT THEM TO DO IT WHETHER IT'S APPROVED OR NOT. IT IS MY LAST HOPE). and if it's not approved...i'm sure my doc won't do it . hubby called insurance yesterday and said "where is the LETTER OF APPROVAL OR DENIAL???" you know what they came back with? "we don't have any information about that! you need your doc to fax over medical necessity". HELLO! this has been in the works for MONTHS!! so finally she says 'yes we have the info, the letter's been mailed but we dont have it in front of us and can't tell you what it says'. i am shaking HORRIBLY as i type this...

everytime i try to HELP myself, the door is slammed in my face. please, advice...anything...b/c i CANNOT and WILL NOT continue like this. this is not a LIFE, it is an EXISTENCE...and barely one @that. we are talking to "bad faith" insurance lawyers on monday...at this point i want TREATMENT and money for my pain and suffering (which i used to think a joke...no joke, what i have been put thru and continue to go thru deserves SOMETHING).

sorry this is so long...please forgive me...but it needed to be said b/c i need help.

...btw, i have been checked for infection (i know that will be one of the first things mentioned LOL). i'm clear.

[kellymh]

I think your doing the right thing by getting an attorney for advice. Do you get your insurance from your husbands's work? I had a similar problem but a much smaller scale and I called my husbands human resources and they straightened it out, it took about 3 months, but they went back and paid things. It was multiple people though not just me. I have anxiety also and it only makes my bladder worse. My counselor tells me to color, or do something from your childhood that makes you feel good. I know it sounds odd, but it sometimes works. I listen to relaxation tapes and also go to yoga. Yoga is very cheap here. I hope on Monday the insurance has taken care of the approval. What we pay for insurance is ridiculous for the treatment they can give us. Good Luck!

Kely

[ICNDonna]

I totally agree that you are doing the right thing in seeing an attorney.

Donna

[kadi]

Hi Tracy,
I had similar problems when I was trying to get my home instillations covered. Every time I called, there was a "new" requirement & they kept saying they had not received my paperwork. I was livid when some ins.co genius on the phone said that they had to be "careful because, you know, someone could say they really needed ski equipment for their medical condition". I pointed out that catheters really aren't in the same category as luxury sporting goods & that I couldn't imagine anyone asking for them if they weren't needed.

Finally, I decided to do nothing by phone, do everything in writing & started the grievance procedure via certified mail, requiring signature for every letter I sent. I made sure to state that their delaying coverage was causing my condition to worsen.
Also that their delay was ridiculous, given that the medicines/supplies for several months of home instillations cost less than 1 single office visit instill by the doctor, which they had not given me any hassle about paying for.

Further, I stated that I was keeping a copy of everything in writing & date/time phone logs to forward to the state's insurance commissioner should this matter not be resolved in a timely manner. I have not had any problem with coverage since then...

But, my treatment cost a lot less than what you are battling right now.
Your seeking legal assistance is probably the only thing to do.
And I also think that there should be a special level of hell for insurance claims personnel who use their power to play games with sick or injured people.

Wish I had some really great solution for you, but I know it's just not that easy. Hang in there, keep the faith, & things will likely work out, it's just going to take some time & your needs/insistance to get to the right individual at the ins. company.

:kissing:

[verdicries]

Thanks Kelly, Donna, & Kadi. I know we desperately need legal help. I'm glad others see it that way as well. This is just ridiculous. I get worse each day w/o treatment.

Kadi, I've documented a lot, sent registered letters...NOTHING seems to get thru to them...a nice fat lawsuit should though. Unfortunately it is a Catholic insurance co...PLEASE NOTE I AM NOT BASHING RELIGION. HOWEVER...within the ins. there are certain things that they will not cover (abortion, birth control-unless like me, I have PCOS and need hormones. My doc wrote a letter and it was actually approved VERY QUICKLY...one of the only things approved), and my treatments (to THEM) look very "reproductive based" (I've had this mentioned to me BY THEM). My pelvic reconstruction was viewed as "medically unnecessary" and messing with my "reproductive needs". Never mind that it was REPRODUCTION that CAUSED me to NEED the surgery. Absolutely ridiculous.

I need to self cath 9 out of 10 times...and they won't even cover my catheters (YET). <shaking head violently> GRRRRRRRRRRRRRRR. Okay, I'll just keep it in me till my bladder explodes and they have to pay for SURGERY FOR THAT!

For someone who is a few days of 29...I feel like I should be at least 110. I am going loco and sometimes...just want to fly out to IL where the ins. is based and show them how I look and what I need to do to function.

[kadi]

I'm so sorry & I hope I didn't seem like I was offering you some silly simple solution.

There are few things that bug me as much as telling one of my friends about my hassles with getting my prescriptions filled (it's a drama that occurs every 3 months) & having my friend say, "Why don't you just....?" (Fill in the blank: "change pharmacies", "explain to them", "talk to the manager", "ask your doctor to write a note", "ask for extras" ? Well, duh, if it were that easy, those things would have worked & I wouldn't be upset!)

Hang in there, you need the treatment & a lawyer sounds like the only thing that will make these people see reason. It is just grossly unfair that in addition to having to fight the illness, that you have to fight for treatment as well...

Sending a hug,

[dancemomof2]

I totally agree with the others also. This is crazy.

[verdicries]

Kadi, oh no...in NO WAY did I think you were being glib!! Please, you ARE trying to help a hell of a lot more than our insurance co...

I will keep everyone updated. Thank you!

[jjt001]

There is usually a state agency that regulates health insurance -- have you tried to contact them? Often they have the right contacts to push buttons things start to move.

[Sarojini]

I am so sorry you are going through all of this... I am not sure what advice to give you other than to encourage you to bring this to that lawyer!! I too agree that it is time to take legal action; this is insane.

This sort of thing is right up my husband's alley... he loves fighting the system, and is great at it. He is away this weekend, but I will ask him what he thinks of this when he returns, and maybe he'll have a brilliant idea for something you can do :grouphug:

[mom_in_ma]

I'm so sorry you're going through all of this. While it's in no way comperable to your situation, I'm finding that our health insurance seems to be dropping all of the meds that the doctor has order from their 'formulary." The pharmacy tried to charge me $300 for 7 tablets of levaquin yesterday because it's no longer covered by our Blue Cross and Blue Shield. For my infection, only three antibiotics came up sensitive...and I'm allergic to one of them and the other was the third option. I ended up having to go with the third choice. My docs office was stunned! I also take allegra....I've taken it for four years....and it's an antihistamine that doesn't seem to make me retain. Of course, what did they just drop from their approved list? Allegra.

So....while our 'premiums' didn't go up this year...they are dropping perscriptions like mad. So much for insurance, huh?

[Bessie]

Tracy,
I am so, so sorry you are having to deal with the insurance company on top of being sick. I do think an attorney is the right course of action since the insurance company can't get their act together. It is a shame that they are not paying your claims and then delaying the letter for your Interstim. I hope that the attorney sets them straight and most of all that you can get some relief from your pain. I am sending you prayers, get well wishes, and a hug too :pray::pray::pray::flower::grouphug:

[tigger_gal]

count me in too I also agree. sending you big hugs and lots of prayers that you are out off pain recently.

[verdicries]

Thank you everyone. I will keep all updated. I am almost in tears because of everyone's support. A HUUUUUUUUGE hug going out to everyone.

It is 6am here, I've been up since about 3:30...my morning ritual <grrr>. I need sleep...:help::help:

[verdicries]

well that letter FINALLY arrived. my doc asked for several things to be approved. keep in mind insurance has my entire freaking file b/c we have learned they always want notes...so they've got it all.

doc asked for more bladder instills (i'm desperate, i'll try again. i only did a few last time and quit cause they didn't help so much and just caused worse spasms); botox; urgent pc; a nerve block for EXCRUCIATING vaginal surgical scar tissue; interstim; and a tens unit.

survey says...

NO.

well, the instills MAY be covered again. they worded it funky. botox=experimental and not in their "usual customary care" for ic. no coverage. same for urgent pc. same for TENS unit...how is something that is fairly cheap and DOCUMENTED to help ic pain NOT USUAL CUSTOMARY CARE??? NOTHING TO THEM IS CUSTOMARY CARE! nerve block requires medical necessity and a predetermination requiring NOTES FROM PHYSICAN--hello?? what the hell do you think they've sent over a million times?? interstim MAY be covered under plan provisions, providing doc notes and that i've failed all medical/pharmalogical options. "predetermination is necessary, send office notes". first off, if nothing else but freakin drugs seem to be COVERED CUSTOMARY CARE to you guys, how am i supposed to know if anything else works? secondly, i have failed medication and the notes/letters sent over HAVE PROVED IT...this is beyond a joke, it is completely INSANE. and the tens unit...my pt let me try one for 2 weeks and i hated it...so i don't really want it anyway. but does this sound completely :cussing: NUTS to anyone else?! so i'm just waiting for the call from the doc saying sorry we have to cancel tomorrow, but benefits aren't guaranteed and we want to get paid. @which point i will say DO IT, i don't care WHAT we have to do. you WILL get paid either by insurance or the big fat lawsuit money that will come in...i don't care if we have to put stuff on our credit cards.

sorry to rant. i am BEYOND ANGRY.......i almost just give up. give me the drugs that don't work, i have no more strength or will to fight with anyone. crappy birthday to me i guess.

please understand, i used to be such a strong and strong willed person. but i am just broken beyond repair, mentally and physically. i have nothing left to give.

[Taramc]

Hi Tracy - HAPPY BIRTHDAY! I just got your myspace message. I've always thought those Wilford Brimley diabetes commercials should be put to rap music (when bored, you can always surf Youtube!)

ANYWAY, I just wanted to say, as you're feeling singled out and picked on by insurance, the truth is you're really not. It's nothing personal at all. I recently watched "Sicko," the Micheal Moore film about how corrupt health insurance companies in the United States have become since they're privatized, rather than government-run like in other countries.

There is an entire staff of people working for your insurance company and making money by denying your claims. Micheal Moore even interviewed people who had worked that exact job in the past, and then just couldn't do it anymore for moral reasons. I'm sure it was because the patients were dying, even committing suicide in some cases.

So the best way to look at it, is it's all a process. They'll deny the first claim, the second claim, etc. They'll have you go to their review board, they'll ask for documents from the doctor, etc. And they'll do it again and again according to whatever process they have in place to keep their costs down.

Also, the people you talk to when you call in, are low-wage call center employees who aren't familiar with your case at all. They've all been trained on how to refer you through various processes, not realizing you've already exhausted them. And I'm sure people like that will make things up to get you off the phone - no skin off their backs.

I think the main thing is to not PANIC while trying to figure out what you'll do if they DON'T pay the claim. Don't worry about your own money going into it. Just assume they'll eventually pay it, after they've tried everything not to pay it, they won't have any reasons left as long as you give them everything they ask for. And if they still deny it in the end and you can't pay it, they'll have to write it off. You can't get blood from a turnip - if you don't have the money, they won't get the money.

Then, once you've trained yourself to not worry so much about insurance, focus on taking really good care of yourself and do lots of things to lower your stress level. Massages, hot baths, etc. I am also OCD like you (my brother has tourettes) and have found something that calms me down: books on tape. I go into a trance-like state listening to them 2 or 3 hours/day. They force me to stop worrying about my condition, insurance, doctors not believing me, etc. And I've found some great fiction in the process.

I've also started hypnotizing myself into a relaxed state once a day. If you can pay for even one trip to a psychologist, they all seem to have made relaxation CD's. Or I'm sure you can get them online. Basically you visualize yourself in a calm, safe place.. you focus on your stresses go out of your body, etc. It's the usual counting down, relaxing your arms, legs, feet, yada yada.

As for getting a lawyer, good idea! I bet there are plenty of lawyers familiar with cases like yours, and you're really sick so they'll have lots to defend.

Another idea might be to make 'friends' with somebody who works for your insurance company and is familiar with your case. You could call him/her directly with questions or to check and make sure things sent in by your doctors office have been received/processed.

Anyway, just some thoughts. I really feel for your situation. I was in and out of hospitals for psychiatric reasons in my late teens to mid 20s and took a lot of crap from insurance companies, so I know how it goes.

Good luck!
Tara in SLC

[SandyRN]

I'm so sorry you're going through all of this. I've been fortunate with my insurance right now but know that will not always be the case. I HATE to hear about insurance companies denying care to the very people they serve. You pay for this insurance and deserve to be cared for. Their "usual and customary" is bunk and is set up to save them money...that's always the bottom line, they want to save themselves money. What I don't get is why an insurance co even exists at all if they don't expect to pay out some cash for their beneficiaries!! It's crazy to me.

I think you've gotten some great advice and I don't know what else to add...I just hope it all works out for you. You certainly deserve a break after all you've been through. It sounds like your doctor is on your side at least and that's a big plus right there.

Please keep us updated. I hope to read that all has been cleared for your interstim and anything and everything else you need ASAP!

:grouphug:

Sandy

[verdicries]

well, either the doc's office hasn't gotten the death letter from insurance or they don't care...cause my surgery is scheduled for tomorrow am! i have to be there @9:45 and am SCARED TO DEATH...

i know there will be more dealings w/insurance cause this isn't truly approved yet. but I NEED THIS DONE AND MY DOC IS GOING ON MATERNITY LEAVE SOON! and we don't have time to mess around with them anymore. i get worse each MINUTE w/o treatment.

more updates later, thanks so much to everyone. i'll let everyone know what the lawyer says too!

[Hangin' Tough]

I hope that all goes well. I will keep you in my prayers, as I do all our fellow IC'ers, and please keep us posted as soon and often as you can.

Steve

[SharonA]

:pray:

[traceann]

:pray::pray::pray:

[jen74]

Oh Tracy, I am so sorry you are dealing with this. I HATE INSURANCE companies! ALso the hospitals that charge soooo much for usually doing not much of anything half the time. I went to the ER becuase I had a bad UTI and they charged me $1,650 bucks. I am not kidding. WHat a joke, and I will have to pay for a big chunk of that as I know my insurance will not cover it all. It is terrible. We are also Broke due to all the bills, so I know where your coming from, really I do. I am praying for you.
Jen

[Claredale]

Tara had a great point, if your doctor's office is worrying about it and believe me the cost of an interstim isn't cheap, so they would be making sure that they would be receiving payment. There aren't many of us that could pay for that ourselves! Mine was over 5 years ago and I know it was well in the $30,000 dollar mark with just the one implant. Like I said in my early posting, my main worry was actually being able to be treated by this specialist that did the implant. Once I was in, I never even did anything as far as verifying coverage, except for scheduling my surgery with my doctor.

Stress takes so much energy, so give yourself a break and just let things go as they go. Insurance companies can be hard to deal with. Thankfully for the most part, mine has been really good except for the out of network stuff, but even that is over with now. One thing to remember about getting an attorney especially if you don't have "real cause" yet, they will be glad to take your case then charge you a percentage. If there is a problem, let your doctor's office that has people that collect for them (called subrogation (collectors)...which I have done before) do the "fighting back and forth" with the insurance company. If their notes meet the criteria for an interstim and they have record they have sent it (most is done over the computer these days), then just leave the customer service people out of it and focus on getting yourself better!

Hugs,
Tracey

[Kara Isabel]

I'm SO sorry that you are going through this, it is SO tragic. I am always complaining about how bad our healthcare system is, and things like this just are SO unfair.

I think getting a lawyer is a great idea! I hope they can resolve the issues and get you reimbursed. And I hope your doctors might cut you a break on payment since you are having such a hard time, I know they want to get paid too, but patience would be nice.

Happy Birthday. It is my Birthday today, too. ;)

hugs
Kara

[verdicries]

OOOOOOOOh I am getting soooooo nervous. I know I won't sleep a wink tonight (not that I get much sleep nowadays anyway!)...but will update everyone as soon as I can tomorrow. I'm anticipating feeling like CRAP:cussing:...so maybe I'll have hubby come on and give a quick update ;).

Thanks so much everyone. I am trying not to give up...but I really don't have any more to give. My soul just feels completely crushed, you know?

And happy birthday to you too, Kara...yay Capricorn!!! :):woohoo:

[Sally939]

I wish you luck. I hope and pray this is the thing that will make you feel better. As for the ins all I can do is shake me head. Please let us know what the lawyer says.

[jen48446]

I'm sorry to hear you're going through this horrible nightmare & I agree it's time to get a attorney involved. A friend of mine got approved for disability however she had to get dr's notes & other things & it took MONTHS!

Feel free to PM me with questions & I can give you her information to see if she can help in anyway?

:angel::smile tee:cat: