Friday, January 7, 2011

The Tower of Power

What is this?


Get a little closer:


a little closer:




What you're looking at is a 30-day supply of locosamide, recently valued at well over $700. Better known as Vimpat (according to my friend A, it sounds more like the name of a small car), we finally have it in our possession. Thanks be to the good Lord above, because a non-profit organization came to our aid and picked up nearly half of the  first month's co-payment (when I find out whether it's ok., I'll publicly name said organization that has reduced me -- or augmented me -- to tears of gratitude). In the meantime, I'll be "working" with Anthem to add the drug to the formulary of covered drugs. If all goes well, the Vimpat will give Sophie some relief without too many awful side effects.

Thanks for being so supportive of my kvetching freak-out the other day. I wrote what I meant and I meant what I said. We have a serious problem in this country of ours, a problem that I think brings shame upon us as a nation. Even though this is a piddly old blog about a piddly little life here in the crazy, beautiful city of Los Angeles, and I'm willing to concede to my self-centered-ness in even having a blog, I know for a fact that I am just one of many. One of millions, actually, who struggle each day in an abysmal system that has for too long masqueraded as "the greatest system on Earth."

(the Tower of Power was made for me by Henry, our resident Lego genius. There were flowers on top, and it was called The Tower of Flowers, but I took the flowers off temporarily to better pay homage to the feats of skill and absurdity it took to get that bottle.)
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33 comments:

  1. Maggie MayJanuary 7, 2011 at 2:31 PM

    i think Vimpat sounds like a snake!

    thank god for that non profit.

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  2. Radish KingJanuary 7, 2011 at 2:43 PM

    Oh Jesus what a great relief. I hope and hope and hope and hope and hope and pray and fingers crossed for some relief for Sophie and you and your entire family and everyone you've ever known.
    love and dancing joy,
    Rebecca

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  3. Carrie Wilson LinkJanuary 7, 2011 at 2:46 PM

    Really glad you got it and that a non-profit stepped in. Love when that happens.

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  4. GbergerJanuary 7, 2011 at 2:54 PM

    Oh, I'm so happy to see that little bottle, and to know that it was co-paid for you! Thanking God, and thank you for sharing the good news!

    Vimpat sounds to me like a little goblin - the good kind - like Dobby from "Harry Potter."
    Sending love to you.

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  5. Ms. MoonJanuary 7, 2011 at 3:12 PM

    Oh sweetling. I hope it helps. "Vimpat" sounds to me like an Indian god, perhaps.
    And that's not so bad.

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  6. From the KitchenJanuary 7, 2011 at 3:26 PM

    Hallelujah--oh my goodness, I spelled that correctly on the first attempt! Either that or my "spell check" has croaked!!

    I hope that this small-car- sounding drug does wonders!

    Best,
    Bonnie

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  7. JenJanuary 7, 2011 at 3:39 PM

    Vimpat, car is probably a good thing, safe. It sounds like a cleaning product to me :) Yaaaay on getting the meds, well done and fingers crossed. Jen

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  8. HeatherJanuary 7, 2011 at 4:26 PM

    :)

    Just wish it didn't take what it took but damn glad Sophie has you as her mom.The boys too.They are all lucky.

    Will be curious who stepped forward.N.O.R.D helped us with the insane 25,000 dollar per vial times 6,for ACTH.Thank God.

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  9. Michelle DeRushaJanuary 7, 2011 at 4:43 PM

    Praise God, hope again! And I agree 100% with Zoey's Mom -- Sophie couldn't have gotten a better mom than you!

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  10. AJanuary 7, 2011 at 5:29 PM

    Well, well. Getting by with a little help from her friends. And now to test drive the Vimpat on the bumpy road....

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  11. karioJanuary 7, 2011 at 5:32 PM

    I hope the drug helps and if it does, I hope that the insurance company adds it to their formulary and I hope that the nonprofit org. lets you send them a well-deserved shout out!

    So pleased it has worked out for now.

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  12. AnonymousJanuary 7, 2011 at 6:20 PM

    Fingers crossed. I'm hoping and praying.

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  13. VictoriaBJanuary 7, 2011 at 6:22 PM

    So glad you got it. I was wondering, is Sophie eligible for Medi-Cal, because if so you could use your Anthem BC as primary, and Medi-Cal as secondary, and the pharmacy can bill Medi-Cal for copays. Could save you a lot of money! If she is a RC "consumer" (hate that term), she should be eligible for the Medi-Cal Dev Dis waiver.

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  14. ElizabethJanuary 7, 2011 at 6:33 PM

    VictoriaB: Thanks for visiting and leaving a comment! Sophie actually does have Medi-Cal as secondary (through a disability waiver), but Medi-Cal won't cover that drug either. Epilepsy drugs are notoriously expensive and insurance companies woefully uneducated about them.

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  15. Tanya SavkoJanuary 7, 2011 at 7:06 PM

    Such great news! Hoping and praying that this brings relief for Sophie and all of you.

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  16. AllisonJanuary 7, 2011 at 7:10 PM

    FINALLY. Jesus. It shouldn't be this hard! I hope Anthem does add the drug, and that it helps Sophie.

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  17. SECRET PEPPER PERSON:January 7, 2011 at 8:00 PM

    I'd love to write their commercial...Warning: may cause insanity prior to procurement due to exorbitant cost, and mental anguish inflicted by insurance deities. Vimpat...because Vimfred just doesn't cut it.

    I'm singing the hallelujah chorus here in Florida. Praying it helps your precious daughter.

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  18. BethanyJanuary 7, 2011 at 9:11 PM

    Tell Henry his lego tower is fantastic with flowers, without flowers, with meds on top, any which way. Genius. Love that pic. Love your bookshelves in the background. I am so happy about this. But sad it's such an awful struggle.

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  19. rebeccaJanuary 7, 2011 at 9:54 PM

    may vimpat spell
    r e l i e f.
    comfort. ease. steady ground.

    i love these perfect acts of kindness. they have walked through the perfect deserving door.

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  20. UnknownJanuary 8, 2011 at 2:24 AM

    Happy (belated) new year, Elizabeth. Trying to wade through all the posts I missed over the holidays. Wow, a lot has happened. Glad you were able to obtain Sophie's meds.

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  21. 37paddingtonJanuary 8, 2011 at 6:49 AM

    the tower of power is you.

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  22. UnknownJanuary 8, 2011 at 7:37 AM

    oh yes.

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  23. AnonymousJanuary 8, 2011 at 9:11 AM

    Hooray! I hope it really helps.
    PS You have an abysmal system, but also great non-profit organizations!

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  24. AnonymousJanuary 8, 2011 at 9:11 AM

    Hooray! I hope it really helps.
    PS You have an abysmal system, but also great non-profit organizations!

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  25. AnonymousJanuary 8, 2011 at 9:20 AM

    Oh my goodness. Hoping and praying it works.

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  26. LeahJanuary 8, 2011 at 1:25 PM

    The tower matches the colors of the Virgin Mary, to the left and behind, on the bulletin board.

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  27. LeslieJanuary 8, 2011 at 1:51 PM

    Hallelujah! Hoping, hoping, it helps.

    As for the medical system, I just spent the night in the ER with my mom, a heart patient who has been in terrible pain ever since her echocardiogram on Thursday. The tech never helped her onto or off of the table (no step stool, either, for an 81-yr-old woman), pressed so hard on Mom's chest that there still was a red mark an hour later, and ever since Mom is suffering extreme chest pain. It may be her heart, but so far all tests show heart is okay, so the docs are looking at trauma from the echo. FROM THE TEST AND THE TECH WHO WAS SUPPOSED TO BE HELPING HER. I just don't know.

    So if I'm not around or just a lurker for awhile, you'll know why...

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  28. ANewKindOfPerfectJanuary 8, 2011 at 8:30 PM

    Wow, thank heavens for the organization that is helping you out! I cross my fingers and hope that the Vimpat brings some relief to Sophie.

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  29. whoJanuary 9, 2011 at 1:04 AM

    ahh, never heard of Vampit, but lacosamide yes.

    It's a strange world Elizabeth

    did you know the drug levamisole is sometimes used for treatmentof colon cancer, and head or neck melanomas?

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  30. TheresaJanuary 9, 2011 at 2:45 AM

    My prayers of hope are with you in this tower of power!

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  31. NoanJanuary 9, 2011 at 5:32 AM

    So glad you got hold of a bottle of that stuff !

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  32. NoanJanuary 9, 2011 at 5:33 AM

    So glad to hear you got your hands on a bottle of that stuff!

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  33. Denise Emanuel ClemenJanuary 9, 2011 at 8:23 PM

    Yay, Yay, yay!!!
    Oh so happy for you!!

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