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My chronic pain story & my struggle with Medicare to get approval for Fentanyl med

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Posted 9/18/2014 8:07 PM (GMT 0)
Thank you Dixie. Everyone has been so helpful and empathetic. Living with chronic pain changes who you are. I have become so cynical that everything is based on money. If the medicines that help me were inexpensive, there would be no issue. If we consider ourselves an enlightened society, health care would be provided at a cost that we all can afford. Our priorities are out of synch and those of us not wealthy enough to pay for care and not poor enough to qualify for low income programs are really in a bind.
Posted 9/18/2014 11:29 PM (GMT 0)
That's right Iziggy,
And then there's those of us mid middle class that got driven into or below the poverty belt by paying those outrageous medical and hospital bills. We, and my wife and I are part of the We, are now having to be tax spenders instead of tax payers and I hate it. But what can I do when my pharm and cancer therapy bills amount to over $500,000 a year? . . . Q

PS: Our SS benefits amount to less than $18,000 a year as I was self employed and could not afford to insure myself as well as my employees so I wasn't insured when the cancer hit. 2 people were out of a job and their med benefits and I was even worse off. This country has turned against the working man and towards the super wealthy. I am sorry to talk politics and I promise to shut up after thisrant, really.
Posted 9/19/2014 4:31 PM (GMT 0)
I totally agree with you, quincy17. I, too, was self-employed. My company was very small. so I paid for my own health insurance. The one smart thing I did was take out a disability policy, so when I became ill, I eventually was able to get both SSA disability and private insurance disability. We eventually lost our house, my wife and I separated for 6 years. We had two young children. The nice part of the story is my wife and I got back together and our separation and are now happily married again. We've had to keep moving as our income has decreased. At 65, the private insurance stopped. I tried to return to work a number of years ago, in a different field but was unable to continue working.

I've done volunteer work through the years and if I could find part-time work where I could work from home and control my hours, I would try that. So far, no luck with that. I never know how I will feel from hour to hour so it's been difficult. People in our situation have very little help available to us.

Take care,

Ira
Posted 9/19/2014 5:22 PM (GMT 0)
Ira, the part about not knowing how you are going to feel, hour to hour, really struck home with me. That's my weakest link right there. I'll wake up feeling great, ready to take on a project or something but in a couple of hours fatigue or pain or both hit and I am driven to bed.
I've tried way too many times to man up and work through it only to wind up sick as a dog for a couple of days. When I say sick I mean totally unable to push myself out of the bed, 20 minute hot flushes, nausea, you name it.
When I rented this house 5 years ago I was so happy as it had a detached shop. It hadn't been used for at least 20 years and was leaking and there was mud from some floods that at places was 3 feet deep. I paced myself and cleaned it out, built tables and set up a frame shop. This took over a year. I did a few jobs but between the cancer meds and the minimum of pain meds I just wasn't able to turn out the work quality that I pride myself on. Two years ago I had to face it and told my customers that the work was beyond me. They understood, I never let anything out of the shop that I wasn't satisfied with so they never got "screwed". The inability to support myself and my wife without getting my SSA benefits back bothers me the most about being disabled. I'll be 60 in 2 months, maybe I'll be able to accept it then. Sorry about the vent but I'm sure you all have been there . . . Q

Post Edited (quincy17) : 9/19/2014 11:25:48 AM (GMT-6)

Posted 9/19/2014 8:45 PM (GMT 0)
I really understand. I became ill when my kids were growing up and I still struggle with guilt about letting my family down. They have been 100% supportive but it still bothers me.
Posted 9/20/2014 12:02 AM (GMT 0)
 

 Wow.The $$$$ is unreal.

 I have Medicare Part-D coverage through Silverscript,which is owned by CVS.

 All pharmacies except it.

 I've been thinking I had great coverage but they'd cover 10 Patches a month but any other form of fentanyl and I'd probably be denied also.

 I have Extra Help through Medicare,at least until Jan.1,2015.

 The only meds out of 10 scripts that I pay anything for are my 2 Pain Meds.

$5.72 for 60 Opana 10 mg

$2.38 for 120 Dilaudid 2 mg

I'm sure I won't always get my meds this cheap.

I wish you better and fairer treatment from Medicare.Everytime I get a letter from them I dread opening it.Today's letter said as of Jan 1,2015 I would no longer automatically be eligible for Extra Help.

God Bless,

Rick

 

Posted 9/20/2014 12:16 AM (GMT 0)
Rick,
I am also on extra care, your letter got me worried. Did you get a reason for the cutoff? Has your income increased or has the entry level income been lowered? If you have any more info I'd sure appreciate it. Living on less than $18,000 a year is tough, a med increase would slay us . . . Q
Posted 9/20/2014 12:33 AM (GMT 0)
I used to have Medicare and Medicaid.I lost my Medicaid for some reason.

That was the reason stated.

It came with an application for Extra Help.I think I can get my Medicaid back with a little effort and probably the Extra Help also.

No more money.A lot more disabled.

The last time I was in the Hospital when I was being discharged they said that I qualified for Medicaid and Extra Help.That was 2-3 years ago.

Rick

eta:I don't draw near $1,800 a month so I'm thinking I can keep it.Hoping.

Post Edited (tidalmouse) : 9/19/2014 6:38:21 PM (GMT-6)

Posted 9/20/2014 12:49 AM (GMT 0)
Thanks Rick,
The $18,000 is for my wife and myself, she's disabled too. We're both on Medicade so I guess we will be OK. These hoops are made for jumping, and that's just what I'll do . . . Q
Posted 9/21/2014 7:10 PM (GMT 0)
Have the same problems as you all have. I have Cigna Health Springs not as a Medicare supplement but replacement. I have ssdi. I get fentanyl patches for my cervical dystonia/spinal stenosis. Costs abt $100. I have used NeedyMeds.com before. I'm so confused abt what ins company is best for me. Is there a website that compares plans based on ur needs??? I have so many RXs and specialists. My income is low, just the ssdi. Any suggestions please????? Thank you so much!!! And as I said, I have Cigna Health Springs as a Medicare replacement and they pay well on RXs...have you checked them out?
Posted 9/21/2014 7:48 PM (GMT 0)
Hi Bluangel,
I've never heard of replacing/replacement for Medicare. We have Medicare, Medicade, and a BC BS supplement that together is paying 100% of our med bills. The only premium we are charged is for the supplemental which comes to about $235.00 for my wife and I. This supplemental is only available in our state, NM. Since this is Ira's thread, you might want to start a new one. Feel free to contact me via email, my address is on my profile . . . Q
Posted 9/21/2014 8:54 PM (GMT 0)
Thank you!
Posted 9/21/2014 10:33 PM (GMT 0)
BluAngel,

I also have Cigna HealthSpring. They offer Medicare Part D. Before Cigna purchased HealthSpring, they were much better about paying for your meds. When Cigna took over a year ago, things changed for the worse. But, like Quincy17, I've never heard of them referred to as a "replacement"...
Posted 9/21/2014 10:49 PM (GMT 0)
Ira, you might want to look at Humana's plan d coverage since it's that time again to change plan D companies. . . Q
Posted 9/22/2014 12:41 AM (GMT 0)
All interesting info and I can identify with each and every one of you. It's the greatest stressor in my life which makes my health worse. I'm in TN. I guess eligibility for programs varies. Maybe I need to go back to DHS again and try for more assistance. I'm just overwhelmed and don't know what to apply for or where to look. I do hate the toll being so ill has taken on every area of our lives. That's just backwards! HUGGZ to u all!
Posted 9/22/2014 1:01 AM (GMT 0)
Hello All
This posting about the medication Fentynol is just disturbing. I have been on it for almost 15 yrs, currently on 100 every 3 days. As time went by, car accidents and my grand scheme of keeping busy through social work increased my pain levels, it went up. I achieved my MSW 21/2 yrs ago. First, I needed six months to recover physically from the exhaustion and increased pain from ten yrs straight in University. Then there was the economy, now a rear end at 30/ mph that my stopped car at red light, stopped!
I now have permenant knee injuries, increased neck pain and daily headaches; feels like I am back at square one 15 yrs ago. No great selfless work for me.
Now, here is why this discussion hits home; I need a divorce, I would then need to pay rent and have been terrified of losing my BC BS HMO. CVS has never blinked at my prescription w this coverage, however, new Tylenol laws from the FDA are causing issues w my Norco
Already very depressed. My knee has made me incapable of basics like driving, stairs, sitting. I don't have lots of options for money anymore, I hope I find anything useful when I reread these post thread. Maybe Oxy or pain pump?
My blessings to all
Posted 9/22/2014 1:20 AM (GMT 0)
Inspiration: I can identify. I was a counselor over 25 yrs and had to give it up. Changing Norco to schedule 2 next month means having to go physically pick up another RX like the patches. I worry abt the money and meds and having to possibly live in pain because of money! Green paper! Venting, I know, but I don't understand how our country prioritizes everything n everywhere else but its own sick. It's pathetically, terribly sad. I have an anxiety/panic disorder as well and this all keeps me upset. I wish there were some cause or movement or organization that advocates for change? HUGGZ!
Posted 9/22/2014 6:27 AM (GMT 0)
Inspiration?,
What was the legal outcome of your rear ender, sounds likes it was a no brainier other drivers fault. Didn't he/she have insurance? Did you have the uninsured motorist rider on your policy? It sounds like you got screwed if you are not getting recompensed for your medical bills. . . Q

PS: Sorry to ask such a personal question, just trying to figure your awful mess out. .

Post Edited (quincy17) : 9/22/2014 5:41:58 AM (GMT-6)

Posted 9/22/2014 8:10 PM (GMT 0)
Hi Quincy17,

Used to have Humana. They were horrible covering Fentanyl meds. Also had Silverscript - they were okay for the first year, then stopped covering my pain meds. This country is too concerned with fighting wars and making money for those rich already. They forgot about their greatest resource - their citizens!!!
Posted 9/23/2014 12:32 AM (GMT 0)
Hi Ira,
I think that I'm the boy in the bubble sometimes, Ira. It's like just because I have cancer they take me more seriously when the fact is, pain is pain. My wife has been on SSDI since 2008 and is more disabled than I am yet she has way more hoops to jump through than I do. Humana denies my Fentora every year but the woman in charge of patient relations has always been able to get them to back down and accept the PA.
I have posted here on the bias towards cancer patients, the same as I've done on other health boards and the answer that keeps coming up is that the system sees cancer as somehow realer than CP. That it it is a more feared disease, my answer to that is BS! . . . Q
Posted 9/23/2014 8:51 AM (GMT 0)
Hi john17(?) and BluAngel
First, john17 (?) , I hope I got your I'd correct. I am new here and accidentally hit ignore user! How can I undo this?..
I definitely have a great lawyer, the man who rearended me was looking at his lap at his gps! Really? Unreal.
I need to have surgery on my knee and am suffering anxiety, depression and probable PTSD. All just great. Will be inquiring for therapists name tomorrow.
BluAngel. Norco has been a schedule 2 in my state since I started. I have to go in to the pharmacy 4x a month, once for each script.
I just hope I find my self again. I fought so hard had a plan and now I am tired.
Blessings shakehead
Posted 9/23/2014 1:34 PM (GMT 0)
hi Blu
It's Quincy17, no problem. I hope you sue the pants off the negligent driver. I don't know what to do about your other problem, it is so tough as I have been there and all I could do was divorce her. That was over 25 years ago and I happily remarried for 24 years now. All I can say is I pray and that isn't much . . . Q
Posted 9/23/2014 3:31 PM (GMT 0)
How to undo Ignore User: go to My Profile at top left of page. Click on edit ignored... You should be able to fix it there.

Wish everything else was that simple to resolve.
Posted 9/23/2014 4:32 PM (GMT 0)
Hey Ziggy...I'm sorry I just "lost" a very lengthy post to you.  I don't think I can retrieve it.  I am heartsick when this happens.  Meanwhile, as I read back through your thread I noticed that jayliz suggested AARP pharmaceutical policy.  Her post may have been lost in translation, so I wanted to know if you saw her suggestion?

I will try again later to "remember" the content of my "lost" post to you just minutes ago. If you so desire, you can "search" my previous posts that document similar struggles with doctors and drug costs.  Be warned that it's not a sweet story with a happy ending.

I just want you to know that you're not alone in your struggles.  My email is available.  Feel free to contact me=)

Hugs~~Dixie

Posted 9/23/2014 6:07 PM (GMT 0)
Hey BluAngel,
Does Tenn offer Etra Help thru Medicare.It pays for my monthly Part D coverage plus pays for,basically,what Part D does not for meds.

I wish you the best,

Rick
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