The Music of the Plight

   

Now sit back and I’ll tell you me tale of woe.  I feel like there should be a sad harmonica playing.  Imagine sad, slow harmonica music.  Ooh, and a banjo.  Wistful banjo. 

Back in June, I wrote about the letter I received from my insurance company, apprising me of the exciting new program designed to fuck with my medication because they didn’t feel like paying for it anymore.  You can imagine how relieved I was on Monday when customer service said that my doctor could send a prior authorization waiver, which would allow me to bypass the step therapy program.  Add happy fiddle, Con brio.  I called my doctor’s office, gave them the information, and rested in the knowledge that everything would be just fine.  

Suspenseful fiddle only, pianissimo
Fast forward to August.  I called the mail order prescription service to refill my Lyrica.  It was then that I found out from a sympathetic and apologetic customer service rep that my doctor had sent the prior authorization, but the prior authorization department had trashed the prior authorization because I didn’t need prior authorization for Lyrica in June.  Through tears and incredulity of the idiocy of epic proportions I was dealing with, I confirmed, and actually had the prior authorization supervisor say to me that:

A) Insurance sent me the notification of the step therapy program, set to begin July 1st, before July 1st so that I would have an opportunity to get things in order with my doctor.

B) I did everything I was supposed to do with regard to getting my medication ducks in a row and my doctor did send a prior authorization waiver.

C) The prior authorization department did receive the prior authorization request.  It was logged as having been received.  

Suspenseful fiddle, mezzo forte

D) The prior authorization department said to themselves, “She doesn’t need a prior authorization for Lyrica,” and trashed the request.  They were not aware of the forthcoming step therapy program because they are not informed of policy changes until the day the policy changes.

Angry fiddle, forte

E) Even though they have it noted that the request was received, and that it was their fault that it was gone, I still needed to have my doctor send another request.


Return to harmonica and banjo, piano

Fortunately my doctor’s office hooked me up with samples while I waited for this load of shit to be flushed.  The first request from my doctor was denied.  They asked what other medications I was on or had tried, (because, I assume, that wasn’t on the first request.)  The doctor’s office said they would send another request.  If this one was denied, then I could appeal with insurance.  Until then, I would wait to hear back from the doctor’s office.  

As of yesterday, I hadn’t heard anything, so I called insurance.  They hadn’t received another prior authorization request.  Sigh.  The receptionist at the doctor’s office said that the only thing they had in the system was sending the request back in June and that, if insurance had denied the request, they would have sent something in writing.  I must have explained that insurance trashed the June request, the doctor’s office had called me, told me the new request was denied, and that they would send another one no less than three times, all while she kept tryng to interject with reasons why I was wrong, before she finally got it and/or didn’t feel like arguing with me anymore.  I listed the pertinent medications that have failed to moderate my fibro symptoms, repeating another several times that, no, the mail order pharmacy only handles one of those prescriptions.  She retorted that since the mail order pharmacy doesn’t handle two of them, it was likely that they would deny the request again.   

 

Blues harmonica, adagio, mezzo forte

I felt defeated and resigned to my fate.  Life was hard enough as it was, but it was about to become a living hell, as far as I was concerned.  Mike maintained cautious optimism, as is in his nature, but I just couldn’t see this ending well.  It’s not like the process thus far had given us evidence to the contrary.  But then, (swelling choir of angels) miracle of miracles, I got the call.  REQUEST. APPROVED!

Cue gospel choir singing “Oh Happy Day!”

FINALLY!  After phone calls and despair and people being fucking clown shoes, I had succeeded!  I was finally going to get the medication I needed!  Now, apparently I needed to wait a day or two to call in the refill, but that wasn’t a huge deal.  After lunch today, I made the call.  Customer service informed me that they couldn’t refill the prescription. While there were two refills left, the prescription had expired on August 27th.  So they need a new prescription mailed which, fortunately, I have.  

Hopefully I won’t get fucked over anymore.  My ass is super sore.  


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Insurance companies like to play doctor

On Sunday, Mike came into the kitchen with a piece of paper in his hands.  He said, “Now, Julie, don’t freak out,” which, as we all know, is the universally accepted way to guarantee that whoever is about to receive bad news will be totally calm and collected.  My body tensed up and I offered a wary, “Ooookaaaaay?”
The letter was from our insurance company, United Healthcare, cheerily telling me that in order to save money, they were no longer going to cover my Lyrica.  The medicine my doctor prescribed for me to treat my fibromyalgia.  The medicine that has made the difference between my ability to walk or not.  BUT!  Not to worry.  I would have the “opportunity” to try other lower-cost alternatives now!  Once I sampled at least three drugs from a veritable buffet of pharmaceuticals, I could then be allowed to resume taking Lyrica.

I began sobbing.  Once again, the insurance company presumed to know better than the doctor and the patient.  Profit shares were more important than patients.  While my body isn’t in perfect condition, I have finally reached a point where my functionality, pain, and energy are better than they’ve been in a long time.  A combination of physical therapy, acupuncture, therapy, and a truckload of medicine and supplements fit together in a Jenga tower of healthcare for me.  If one piece is removed, everything will come crashing down.  Additionally, Lyrica causes weight gain for patients genetically predetermined to gain weight on such medications, like me.  The last time I went off Lyrica to try gabapentin it was an abysmal failure.  The more I took, the more pain I experienced, to the point of not being able to touch my feet to the floor, let alone walk.  So back on the Lyrica I went.  My body went, Oh, gee, this is a new drug that’s telling me to give Julie an additional 20 pounds.  To try and fail with another drug would guarantee more weight gain for me, making my body virtually untenable.

I looked at the list of drugs I needed to try. It was laughable to me.  If ever there needed to be more evidence that so many believe fibromyalgia to be all in the patient’s head, this list of drugs proves it.

1. Cymbalta
An anti-depressant that I’m already taking.  While it is a drug that is specifically marketed to help with pain caused by depression, it stopped managing my pain within a few months of beginning the medication.  Anecdotally and according to doctors with whom I have spoken, this is common with Cymbalta.

2. Gabapentin (commercially, Neurontin)
It does work for some, but you have already read how it worked out for me.

3. Effexor XR
An anti-depressant.  I’m already taking an a anti-depressant.  Two, actually.  I don’t need a third.  It can be used off-label to treat diabetic neuropathy, but medications that are actually meant to treat that condition are preferred.

4. An anti-depressant, like amitriptyline
Again with the anti-depressants!  Oy!  Depression doesn’t cause fibromyalgia; fibromyalgia causes depression.  Wouldn’t you be a tad bit depressed if you were in constant pain, knew you were going to be in constant pain for the rest of your life, and could no longer participate in life the way you once did because of your pain and fatigue?  This is also a potential off-label treatment drug but, again, I don’t need a third anti-depressant.

5. Savella
What’s the problem with Savella?, you may ask.  After all, it’s a drug that specifically treats fibromyalgia.  Here’s the thing.  I am in fibromyalgia forums where people ask about experiences with Savella all the time.  Out of the hundreds of people who say they’ve been on Savella, two have had a good experience.  Two.  Noooooow, I’m not a bettin’ woman, but those don’t seem like terribly good odds.  One of the bad side effects of Savella is terrible nausea. I am a complete pussy when it comes to nausea.  Give me pain any day over even the slightest bit of nausea.

Once I was able to pull myself together, I began Twitter-shaming United Healthcare as quickly as my brain could think and my fingers could type.  On Monday, once I explained that trying new medications is not like sampling ice cream before you choose your cone, I was given the prior authorization number for my doctor to call, (which was conveniently left off of the letter) to tell insurance that I need to be on Lyrica.  Because the prescription wasn’t enough.

Via Garfunkel & Oates

Via Garfunkel & Oates

As I Lay Hurting

 

I had my first pain management doctor’s appointment today, as the new rheumatologist I saw at the beginning of the month doesn’t do pain management.  I went in hopeful.  I should have known better.  Once again, I was met with fat-shaming and incredulity.  And after he was finished beating the shit out of my body, confirming what three other doctors have already diagnosed, I was treated to feeling like a drug addict when I signed the agreement not to sell my tramadol and handed them a pee sample.

I don’t really feel like writing a long, coherent post with subject, verb, tense agreement, so here are the highlights.

  • Is there something in the Doctor’s Guide to Being an Asshole that says that when a patient complains of fibromyalgia, the doctor must poke and prod as hard as possible so that the patient gasps and screams?  It’s like if you went to the dentist, complaining of a sore tooth, and the dentist shoved a sharp instrument up through it to make sure you’re really telling the truth.  I felt like I’d been on the wrong side of Mike Tyson by the time he was finished.
  • Maybe this is my own personal quibble but, when did doctors stop giving physician referrals?  I keep having doctors tell me, “You need to go see this specialist,” but don’t give me a place to even start.  Are we just supposed to figure it out for ourselves?  At the last doctor visit was the rheumo telling me I needed to go to physical therapy, but to make sure it was somewhere that has experience treating fibro.  Today, I was told to go see a dietician for weight loss and a non-inflammation diet.  And when I asked for professional referrals, they looked at me like I’m ridiculous and bothering them.
  • Why do doctors insist on fat-shaming their patients?  I was in a fuck-ton of pain when I was 100 pounds lighter, back before there were weight gain-causing meds and the inability to exercise.  Will weight loss make me healthier?  Sure. Will it eliminate my pain?  No.

 

Image via imgarcade.com

I’d like to get these doctors to understand how it feels to live with chronic pain, especially when it comes to exercising, (yet another thing I got shit about today, as I don’t do enough aerobic exercise.)  You know what I’d like to?  I’d like to beat the shit out of them with a baseball bat, tell them to drop and give me 100, and then scream in their faces like a drill sergeant:
WHAT’S THE MATTER, PRINCESS?! DOES IT HURT?  IS IT HARD?  ARE YOU GONNA CRY?  IS LITTLE BABY PRINCESS GONNA CRY?  Do you want to stop?  You do?  GIVE ME ANOTHER 100!

I’d also like to strap them into some sort of device that creates fibro pain, (like the ones that cause douchey husbands to feel what labor feels like) and then make them go for a 10 mile run.  RUN, FORREST! RUN!

  • “Studies show that Percoset and other narcotic pain meds don’t really help fibromyalgia.”

The pain doctor actually said that to me.  I just wish my body had known that when I had to take it while I was at Disney so I could have the ability to walk.  And I’m really tired of doctors saying that studies show this and that, when it’s really just an excuse to do whatever the hell it is they feel like doing. Of course, narcotic pain meds don’t cure fibro.  But on days like yesterday when I could barely walk without crying because of how much damage he did to my body during the exam, it would have helped. Fuck the “studies”.

I really wish I understood why doctors insist on under-medicating pain patients before they’ve even exhibited signs of addiction and abuse.  Doctors don’t do that to other patients in pain.  It would be the equivalent of a doctor saying to a person with a broken leg, “What you need to feel better is a cast and crutches, but you’re going to have to just walk it off and find some other way to feel better.”  It sounds ridiculous, but that’s what doctors do to chronic pain patients all. the. time.

Once again, I feel stuck.  Being stuck with a shitty doctor is almost like being stuck in an abusive relationship- you can’t leave because, if you do, it will look like you’re the one to blame.  It will look like I left because I’m a drug-seeker, hoping to find a dealer with a medical degree. You’re an addict, Harry.

Finally, a message to all the doctors who think I don’t exercise…

Motivation is a double-edged sword

I’ve been more depressed lately. I could tell because I was becoming more withdrawn, more exhausted, and more screamy. My motivation to do anything had also taken a nose dive. I knew it was time to see the doctor again to increase or change my meds. First, I saw my primary care doctor, who had prescribed Cymbalta in the first place. She told me that studies show that the efficacy of Cymbalta didn’t change with an increase in dosage from what I was taking. I also asked for, and received, a referral to a psychiatrist. It was time to take it to the next level.

When I met with the psychiatrist, I mentioned what my primary care had said about the efficacy of Cymbalta in dosing. She screwed up her face like it was the dumbest thing she had ever heard, (in response to my primary care, not me) and said that it does work past where I was, otherwise they wouldn’t make doses that go up to 120mg. So, she increased my dosage and got me set up with a therapist in the office for talk therapy.

Holy crap, was my primary care wrong. Increasing my Cymbalta has been a big ole bag of helpful. I feel happy and the desire to be engaged again. I’m less fatigued and a little more clear-headed. My patience doesn’t deteriorate to shrieking flying monkey in 2.3 seconds now. And I feel motivated, whether it be to engage in relationships or do things around the house. Yesterday I finally took the initiative to clean up our basement steps, where everything to go downstairs gets dumped, and put together the shelving I bought.

20140508-101145.jpg
This is what classy, non-hoarding organization looks like.

This motivation to engage in normal life comes with a price, though. While the increase in Cymbalta makes me feel better, the fibromyalgia is still ever-present. I’m still fatigued and I’m still in pain. The newest incarnation of pain is in my feet and ankles. Everything is swollen, it feels as though my legs are crushing my ankles, and it feels as though the bones in my feet are slowly breaking every time I try to stand and walk. The pain reminds me of the time Mike and I went to see Spamalot in DC. I had fantastic shoes to go with my dress. Unfortunately, what I didn’t realize when I bought them was that they were so fantastic, the pain of wearing them would leave me standing barefoot in Metro Center. It’s too bad I can’t hang my feet on my fingers like some cute, strappy sandals.

I’m sure this has been made worse by all my Cymbalta-assisted flurry of activity. It’s really hard to see all that there is to do, have the motivation to do, and force myself to sit and rest because my feet are being little cunts. But that’s exactly what I’m trying to do today. I have pain patches attached to my legs, ankles, and feet, and I’m taking breaks from being on my feet. So far, it seems to help if I do chores in short bursts; I’m accomplishing tasks without over-taxing my body. At least, that’s the status as of now. We’ll see if that continues throughout the day. The goal is to have the ability to stand long enough to cook dinner at the end of the day.