Monday, April 7, 2014

I Am Not Dead (YET)

Colossally lazy, yes. Dead, no. Not yet, anyway. Although I HAVE been feeling a pain in my left calf that *might* be a blood clot that will eventually travel to my brain and explode. For now, though, I live and breathe. Here's why I've been neglecting the blog and not visiting any of yours:

  1. Colossally lazy (covered this already)
  2. Days may be numbered (see: blood clot, above)
  3. Two fellow editors at my workplace selfishly decided to have babies, leaving me with all of the work. So, SO thoughtless of them
  4. MS/cancer/blood clot (or all three)-related fatigue

Those of you with MS who are on a disease-modifying drug (DMD) like Copaxone (which is what I'm on) may be familiar with the following phenomenon: you switch insurance annnnnnnnnnd, suddenly, getting your DMD becomes more difficult than that time a monkey was sent into space (or was it a dog?). I mean, really. My insurance has changed recently for lots of boring reasons, but as has happened Every.Single.Time there's a change of insurance, the new company is taking for-f*cking-ever to get me my meds. I've been completely out of Copaxone for almost two weeks now.

Wee Squeaky says I'm getting punished for adopting that damn third cat.
I've called my neurologist's office. I've called the insurance company. I've called Shared Solutions, which is a resource for people on Copaxone. The Shared Solutions people have helped on several occasions as as I've waded through the dozens of calls required to get my meds after a change of insurance. But the combined power of Shared Solutions and me is not enough. The insurance company drags its heels and insists on authorizations and --oops!-- preauthorizations and calls to specialty pharmacies, which need prescriptions, but wait, they're still waiting on the authorization (or was it the preauthorization?), and they haven't heard from the neurologist, so please call to have him fax the prescription to this number -- no, not THAT number, which we gave you two days ago, but THIS one -- and call us back but of course, sure, we'll call you when we've gotten it; oh, who did you talk to last time? Sorry, I don't see any notes in your file, let me put you on hold for 45 minutes....

It's truly one of the more frustrating, infuriating, and exhausting processes I've been through. And it happens without fail. Why, WHY is it so hard to get the meds we are told we need? I know some people eschew DMDs altogether, but I'm not willing to go that route yet, even though I kind of am by default now. One of the nurses at Shared Solutions said my MS symptoms could flare up during this no-drug period, but so far I haven't had a relapse. I've been feeling the fatigue more than usual. Is it coincidence? Is it because I'm temporarily off the meds? Is it that freaking blood clot? I don't know. Do insurance companies make this so hard because it really IS as challenging as putting a monkey (or dog) into space? Or is it because these drugs are so expensive? In a moment of desperation, I asked someone last week about getting a small supply of injections to tide me over. To get 30 injections -- the smallest dose they could parcel out -- I'd have to pony up $5,000 out of pocket. Ummmm, yeah, hang on while I write that check.

So, I wait. And call. And get put on hold. And get told there is another hoop to jump through. And all I can do, as far as I can see, is call back and then call again and wait and wait some more and hope someone will hurry the hell up.

26 comments:

  1. I can't speak for MS, but when my wife had the dreaded C-word of the uterus (not as terrible as it sounds) she needed routine treatments and medications to get rid of it. And each time, without fail, her insurance would reject her and she would have to spend hours on the phone fighting tooth and nail to get them to pay for the procedures and meds that their very booklets insist they cover.

    You know, because that's exactly what my wife needs as she battling f**king cancer.

    You know what the true definition of irony is? Watching one of those bulls**t insurance commercials with the soft music and the woman's voiceover saying, "Here at our insurance company, we truly care about you, and we want to give you the special care that you and all of your loved ones deserve."

    Yeah. F**king. Right.

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    1. Oh, ugh. That's horrible. I figured it happened with others on expensive drugs, though. (And now I'm feeling like an ASS about my cancer joke -- my bad.) Hope your wife is better??

      Those commercials make me want to throw my cell phone -- where I've been sitting on hold for 82 minutes -- straight at the TV.

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    2. Yeah, she's great. She's dead!

      I'm kidding. I'm kidding. Don't apologize for joking. I'm like the least offendable person on the planet.

      It's always hard using that word "cancer" because people hear that and they think death sentence. This was 4 years ago, it was very minor and caught early, and after a year of treatments and meds she's all good. No lasting problems, and it shouldn't ever return.

      But it's always nice knowing that we pay an ungodly amount toward insurance each month, you know, to be taken care of in case of a rare emergency (such as this), only to have them fight you and say, "No way, I'm not paying that! This is just, like, for when you get a cold or something. Achoo."

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    3. Welllllllllll, unless it's a SEVERE cold. You may have to fight a bit for treatment on that one...

      Glad to hear she's okay and that cancer/dead-spouse jokes are a-okay. (And I'm plenty offensive, so it's good to have not-easy-to-offend readers!)

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  2. I've MISSED you)), Ms. Cranky.

    Thinking of you in Minnesota & sending you Massive HUGS. xx

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    1. Awww, thanks, Chick! I didn't realize how much until I came back, but I've missed you all too!! xxx

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  3. goddamn - i just wrote an incredibly eloquent comment which has disappeared for some reason - seriously you would've loved it - witty, pithy and a little bit of filth thrown in...

    anyhoo, i'm glad you're still keeping on too.

    these stories of the "caring" "profession" fill me with horrors - god bless the NHS

    and insurance is such a racket - i'm obviously in the wrong business - although i seem to have HUMANITY where i need a DEATHLESS VOID.

    god, i'm such a hippy - much love! x

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    1. Steve (or do you prefer Magic Man?), I did see both comments and was thisclose to allowing them both to appear on the blog so as to appear MORE POPULAR. However, this *one* time, maturity reigned, so I picked the most witty, pithy, and filthy comment I saw. (Both were excellent, natch.)

      Happy to be back! I realized I follow the blogs I do because I actually LIKE you all, and I missed you when I was away. And, of course, I missed the comments on my little effort here.

      Keep up with the no-DEATHLESS-VOID thing; hippy is so much nicer! xx

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  4. It sounds like it is time to pull my favourite curse out and throw it at all the oxygen thieves who are denying you your medication (which of course you inject for fun). I wish painful haemorhoids on all those people. Painful, inconvenient, undignified but not (in the scale of things) all that serious. And I hope they cannot access medication/treatment to help them.
    Extra fatigue? Stress and frustration will do that.
    Welcome back - I was just about the send an email to see if you were ok(ish).

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    1. Thank you! That is a most excellent curse! I am ---WAITING--- to hear something today, and am dreading the idea of calling them again, which I surely will have to after work.

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  5. As if you don't have enough to deal with... how aggravating! Been through a few of those phone calls myself. It's those kind of services that inspire me to be much more customer oriented in my own job.
    Anyway, best of luck to you while you fight your battles. Hang in there! Keep at it! And MAYBE you'll get through......

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    1. I think someone's on to my blog; I called yesterday (after posting this rant) and was told that my doctor hadn't sent the information to the proper place and that he'd need to call THIS number and after that it would take several days...I was about to cry it was so maddening.

      Thanks for the encouragement, though!

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  6. Yay!!!! You're back!!

    But how awful, this whole insurance malarky. Can't imagine how frustrating it must be. As Steve (Magic Man) says, god bless the NHS.

    We're off to your wonderful country next week, The Teenager armed with a list of sweets he must buy and fast food he just has to try. Can't wait!
    X

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    1. You and Magic Man have a good thing going, I think. It's really an enormous headache (or is that a brain tumor??).

      Hope your trip is fantastic!!! Will email you for details! xxx

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  7. Maybe if your doc, the insurance company & Shared Solutions merged their ray guns together into one (like they did at the end of Ghostbusters), it would be powerful enough for you to get Copaxone.
    Seriously, that sucks.
    So glad you are well & back!!

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    1. Sock, I suggested that and the other parties hung up on me. How rude!

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  8. Do you have a local MS Society chapter? The reason I ask is that I work for an advocacy organization, and when people have these kinds of battles, we can often make calls and go to bat for them. Perhaps the MS Society could do that?

    PS Insurance companies = fuckers. It's in the dictionary.

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    1. I do have a local MS Society chapter, which I haven't tried yet. Great idea, thanks! Shared Solutions is *supposed* to help w/ this kind of nonsense, but I'm still waiting, so I guess I should try something else.

      If I had a dollar for every time I said insurance companies are fuckers, I'd be able to pay for that month's supply already,,,

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  9. I can see why you are cranky...I have no real excuse.

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    1. To be fair, I was cranky before this happened too. Now I'm just CRANKIER.

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  10. I love your sense of humour! There's no better way to deal with life's problems, issues and general BS!!

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    1. Thanks, Debra! With this particular BS, all I can do is laugh (but it'll be tough to remember that when I make my 1,286th call to the insurance co. in a bit...).

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  11. What was that movie... Terms of Endearment... Where the Shirly McClaine character ran screaming through the hospital demanding meds for her daughter

    I hope you don't have to go to that extreme... but it worked in the movie

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    1. Actually, I just did that and...it WORKED!

      No, not really, After three taxing/infuriating/depressing weeks, I got my meds yesterday. Nightmare. But I got them. So, yay!

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  12. Ugh. I've been away too, as you can tell… I feel for you. Deeply. A couple of years ago I fought my insurance company for 7 months for a drug the previous insurance company covered with no problem. WIthout the meds, I can't, say, read a newspaper, stay awake or use the stairs in my house safely. Eventually, with the help of the state, I got my medication. But it was such a pointless exercise in misery. Don't know who your insurance f*cks are, but I will say, I'll never spend a dime in a certain retail pharmacy chain whose 3-letter name begins in C and ends in S…

    As if having a rotten disease weren't enough, to have to fight… and fight… and beg and be at the mercy of merciless scum just to get the meds you need to keep going… It's cruel. Glad you got your meds in the end, but what an unconscionably stressful thing to put you through.

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    1. Ellen, I figured you might be able to relate...unconscionable is the perfect word to describe what insurance companies put people through.

      Seven months -- wow. That's just awful. Beyond awful. So glad to hear you EVENTUALLY got your drugs; makes my three weeks look positively speedy. And I'm lucky in that I didn't have a relapse. How long does it take before you start noticing symptoms flare up?

      I can't boycott my insurance f*cks, sadly, but I will avoid C...S from now on out of solidarity for you. We have to stick together in the face of this shitty disease and the shitty treatment we often are subjected to.

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