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camul's picture
camul
Posts: 2229
Joined: Dec 2010

Saw my onco Thursday. I have dealing with a mess between my benefits and Medicare for the past 3 weeks. This has been even more frustrating and stressfull than all of the cancer treatments combined. I found out on April 11 that my medical ins became secondary to medicare, yet I did not take part B because I was told by benefits dept that they had extended my full benefits. Verified with medicare that because I workrd for a.company with over 100 employees that medicare would be secondary and therefore, no reason to be paying dual premiums. This was in Dec. Got letter from company bene's in Feb. stating premiums would drop to 6. dollars, called them, was told that was an error, asked again if I needed to get part B was told, nothing was changing it was a mistake in the system that they corrected it, my premium would be continuing at the regular rate as they extended bene's. I called medicare they informed me that if there was a change dut to ins. changing I would just need to go to ssi and fill out a form 40B and as long as I was in the initial enrollment they would date it back. Then on April 10th I went to cancer center and was told my bill was really high did I want to meke a payment.
My advocate thru the center called my ins co the next day, and they informed her that because I did not take part b, I was only being covered bymedicaee parttA.
So I called my benefit dept as well as Medicare and was again told by medicare not an issue, just go to ssi and fill out 40 B. I did, when I saw the caseworker she stated that did not apply to me because I was under a contracted cobra policy, and ins said they were penalizizing me for not taking part B. Yet company has still continued to take full primiums from checking. Worse part was how rudely I was treated at the ssi office.
The next day my benefits called and conferenced in medicare where they were given the same info, my caseworker got 2 supervisors and it took them 15 minutes with medicare to figure out the whole cobra factor. Then my caseworker from my company benefits said I should have known this. Finally, the medicre man said how would she know this when we were both giving out wrong info. He then escalated to his next level and my benefit dept also escalated. The lady at ssi the day before denied the part B, So now I have to appeal it. Mbenefits called On Friday and said due to the misinfo they had given they will extend until medicare picks up. Then I got a call from the escalateed medicare stating that I have to fill out another form and go back to ssi and appeal all of this due to misinfo given by 1800 medicare. He said call dept of aging. whrn I did I was told that he told me the wrong form. 2 days later they called back and said that was the right form. I have not gotten the same info from any rep in the medicare, but at least they treat me better than the ssi employees.
At this oint, my onco is continuing chemo for 4 more treatments which I get weekly, then we are stopping all chmo. At this point I cant feel any difference in pain levels, in fact my ribs and chest are worse as well as the pain in my right hip is increasing. We will do a bone scan or CT Scan when all the ins mess is done with, but it appears that my body is not responding to the Adriamycin either. Dr says cant stay on the chemo indefinately as my immune system is not tolerating it so well. This is after 2 1/2 years of weekly chemo.... part of me is so tired that I want to stop and have quality, and the oher part of me says insist on going regardless how i feel. My boys say to get some quality in my life ie. no chemo, but they understand and support whatever I decide.
Between chemo and fighting with ssi, I am worn out.

Just a forward, take part b when offeredFrustrated and tired,
Carol

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

Carol, I am just so very sorry that you have to go through all of this.  As if cancer isn't enough!  I wish I could make it all better Frown, but all I can do is send love and hugs and prayers.  Hope things improve soon!

New Flower
Posts: 4250
Joined: Aug 2009

Carol,

 I am sorry that you have to be stressed out about insurance and SSI on the top of your serious ilness. Please know that we support you no matter what and hope for the good outcome of your Scans.

Hugs

Jean 0609's picture
Jean 0609
Posts: 2398
Joined: Jun 2010

I am so sorry to hear that you are having to go through all this administrative crap.  You don't need this on top of everything else.  Just wanted to let you know that you are in my thoughts & prayers.

 

xoxo,

Jean

 

VickiSam's picture
VickiSam
Posts: 8677
Joined: Aug 2009

From the moment you hear those words "You have Cancer",  your life changed. You have learned about every possible treatment, and drug out there to prepare you for battle. You've are intensely well versed in all medical options and drugs choices.

I hate that you've had to battle with the insurance bureaucrats regarding medicare part A, part B, corba and having to spend countless hours on the phone to confirm your participation in medial programs, and coverage.

Your are a Cancer Survivor who shares her Wisdom and Hope.  I wish, and hope someone can somehow return the favor,  and pave the way for less stressful days for you.

You are my HERO, and I adore you. My heart and prayers are with you, Carol.

Vicki Sam

 

 

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

What a mess!  It sounds so very frustrating.  And then you also have to deal with cancer and all the stress it creates.  I wish I had more than hugs for you...but I have lots and lots of those!

Hugs,

Linda

lintx's picture
lintx
Posts: 475
Joined: Sep 2012

 

I always make sure to read your posts, and this one got my attention big time!  I dread heading toward Medicare myself and now even more.  It's appalling that you're being treated this way and dealing with cancer, too.  It seems no one knows the answer to anything, and we have to figure it out ourselves.  I'm going to remember the part B thing when I have to be Medicare.  Thanks for explaining what you know.  Hugs to you, Linda

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Carol,

 

I understand somewhat your complications with Medicare, and etc.  When I began the process, there was and still have some mix up.  I remember thinking what I need is "a wife", a good woman who would sit down and fix up the SS, Medicare along with FML and do all my paper work.  My dad was ill for many years and my mother took care of all the "details".  So therefore, I needed a wife to do the same for me.  Like you, I am divorced and my sons already do so much to help me out that I didn't want to ask for "one more thing".  I am muddling my way through it without all your complications.

 

I am sorry that the chemo has done so much harm to your body.  I know that you will make the right decision for Carol when all the facts are in.  I can imagine that your worn out and the emotional strain that ssi has given you is inexcusable.  Ask the employee's at ssi if they would like to be treated in this manner if the situation was reversed.  You might add in an undertone "but for the grace of God, go I" and then walk out.  Let them ponder about the quote.

 

Sending you gentle hugs.

 

Doris

camul's picture
camul
Posts: 2229
Joined: Dec 2010

getting ready, I got a phone call from the agingadvocate from Medicare who brought my info to her spvr whom in turn told her to call a spvr for ssi in Denver. She did this a couple of days ago and she got a.call back from her this A.M. She said she would call me for adl info. As soon as the aging advocate hung up the phone rang, it was ssi rep/spvr. She was very nic, I was suppose to go Friday today to ssi to file appeal and turn in the form ss 561. She said more misinfo from Medicare that is the wrong for. I only needed the letter to appeal along with form 40b which I already did almost weeks ago. Said to hold tighr, asked if I still want it effective Mar 1 or June 1. I told her asap that I will pay the 3 monthsnes that they will cover til part b comes through but nohing is in writing and Unitd Healthcare had not received an emai, fax or letter. I would feel better knowing the medicare is in effect. for Mar April and May premium for part b. as I heard from my b
She will let me know the decision after she speaks to the spvr from here who would not talk to me in person, thi k she is over her but said they would have his straightened out by this next week at the latest and she will cal me. I felt releif.
But I had chemo, decAdron and vit B shot, came home with headache from hell and nauseated. feel lsomething isnt right my ribs are sore,and I feel like my kidneyhurts again. Talked to he nurse but declined the PA or Dr. Told hw I will call Monday if not better or tomorrow if it gets worse. They were so busy in there that I didnt want to pull him from other patients, I think the headche is making it all worse! Now it is 4a and still cant shut down from the steroids and my breathing is relly tight.
I am reading so many new stage iv. I really hate this disease. I too have skin mets and ithe spots do itch, thNks Doris, I didnt know eiter there was anything I could do for it.

Thnks everyone, the fight is getting harder and with it I am having a harder time staying active and positive. There os so much I want to do, no energy, and I feel prett shi++y. Wa hoping that the vit b and steroids would at least give me energy to get out and move, but I am finding tat a trip to the grocery store or mass is about all I can do sometimes and that is so not me! Hoping the brek from chemo will revive some of my energy. My nurse thinks that some of the increased pain and some trouble breathing may also be a sign that the chemo is caosing cellular changes which would be a.good thing. I want so much to believe this but when I feel like this I have a hard time believing it.
Hugs and love back to all of you,
Carol

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

You don't deserve any of this mess you are dealing with.  I sure hope it gets fixed soon.  Sometimes I have to question the saying "God never gives us more than we can handle".  I'm sending you extra extra hugs to hopefully help you get through this.

HUGS!!!HUGS!!!HUGS!!!

Jamie

New Flower
Posts: 4250
Joined: Aug 2009

i am always impressed by willpower of survivors of our CSN community

I am glad advocate is helping 

hugs

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I do understand about no energy Carol.  I had an iron transfusion yesterday and last night went to bed early and slept 12 hours.  I plan  on doing just a few things a day.  I run out of energy that quickly, considering I had a blood transfusion along with potassium, magnesium and what ever while in the hospital, I am still very, very tired.  

My primary care doctor contacted my oncologist for something to help with boosting the RBC.  The primary care nurse said, the prescription approval came in and she faxed the prescription to to my pharmacist.  However, when my son picked it up, he said that my prescription insurance needed more information.  I contacted the primary care nurse and she said, the doctor will write up something, it will be fax and then we have to wait for approval, not to expect the prescription now until Wednesday.

This is small potatotes against what you are going through but it does ask us to use  more energy than we want to do on such things.  It tires us out for no good reason.  I am hoping that you will have the situation resolve asap.

Gentle hugs to you,

Doris

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I agree completely!  When my energy is sapped, I often feel like my world gets smaller (does that make sense?).  I do not have the energy to go much of anywhere or reach out. 

Little and big financial and insurance issues are overwhelming.  I am living on zofran because, for some reason, the liver mets has really kicked up nausea with me.  This year, my insurance is rationing zofran and, after several calls, I found I need my physician to fill out a form for preauthorization.  This all is minor, but ends up taking many calls to just get zofran for liver mets. And way too much energy.

It is not enough to battle cancer...sigh.

 

camul's picture
camul
Posts: 2229
Joined: Dec 2010

My ins allowed 12 zofran for 12 weeks of weekly chemo. Then we would need pre approval. They were gone a month ago, so I am taking ativan again and have the marinal, but that does nothing for me. I agree that the liver mets do make the nausea worse. Hope you feel better too! I have slept 5 hours since Thursday's chemo, finally feeling the steroids winding down!!

Hugs, Carol

camul's picture
camul
Posts: 2229
Joined: Dec 2010

Hopefully I will hear back by Wednesday. Don't minimize your stuff. We all need to be writing our congressmen and force some changes with the whole health care system. Pretty sad when doctors do not have the final say in our tretments. So I am sending letters. I am not the only one I am sure with medicare issues but it has to change.

lintx's picture
lintx
Posts: 475
Joined: Sep 2012

 

I go to mass on Saturday evening, and I'm giving my intentions all to you this time!  I always pray for ALL of us here.  When I read the problems many of you have had w/prescription requests, it makes me furious.  Yes, it is enough to deal with cancer.  I have no reason to believe I won't hit the same brick wall at some point.  Praying, Linda

camul's picture
camul
Posts: 2229
Joined: Dec 2010

It has all been due to misinformation but it takes way more effort. Thank you for the prayers.
Hugs, Carol

KathiM's picture
KathiM
Posts: 8037
Joined: Aug 2005

...and shaking my head!!!!!

 

Both of my daughters were disabled, and I HATED SSI!!!!  I knew more than the input clerks (still do!).  And, at a whim, they have the power to deny benefits, and then YOU have to fight to justify their return!!!

 

I am so happy you have and advocate working with you, dearheart!!!  They have learned the in's and out's...you need to focus on staying as well as you can....

 

Hugs, Kathi

Lynn Smith
Posts: 1265
Joined: Mar 2011

Very sorry for what you're going through.I know the feeling. I let my bills go.My husbnd is still working and we have United Healthcare as Primary and Medicare as secondary.BUT we get billed.When I call the doctors offices they say they'll contact United Healthcare(I'm told they're responsible) .I never hear back.IMO the Primary is trying to get out of paying the doctors.Just a hassle and very stressful.Just what we don't need!!!!!

Lynn Smith

camul's picture
camul
Posts: 2229
Joined: Dec 2010

You are so right. It is one person who literally holds the power. Medicare rules are so different when it is disability rather than turning 65. The frustration buildup is so consuming, you have to be so careful as they hold all the power.

Double Whammy's picture
Double Whammy
Posts: 2434
Joined: Jun 2010

I'm so angry about all of the logistical issues everyone is having.  It should NOT be this way.  But we all know that and it doesn't matter, does it?.  I'm just so doggone angry for you all. 

Please take good care of yourselves - or as good as you can under the circumstances. I'm thinking and praying for you all.

Suzanne

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