7.03.2013

so disappointed in LLS

This has nothing to do with my lymph nodes, but though I'm about to go through a SCT, I'm appalled at the way I've been treated and given the run around by LLS, since I was diagnosed in NOVEMBER and applied in NOVEMBER 2012 for copay assistance (because let's face it, med bills and gas for your car aren't cheap) and I just received $84 this past week. Seriously? I'm about to blog about my situation, for there was only one helpful person at LLS that I've spoken to through months of trying to find a leeway I'll never get to. I'm so disappointed.


Rundown of the story: I was diagnosed right after 2 biopsies and during hurricane sandy. So November 1st, I was told I had Hodgkin's Lymphoma and I called the Leukemia and Lymphoma Society right away.

Between sending them in what they needed (remember, this is Nov. 2012) bone marrow biopsies, chemo treatments, anti-anxiety meds and a port placement and an emergency room visit, I was pretty busy for about a month and a half.

So the first week of January or so, i call LLS to see if there's any leeway on my case- not like i'm really thinking about paperwork, but with HL anything helps.

I get this super nasty lady on the phone who treats me like a piece of crap. i doubt that was even recorded.

Cue more chemo, a bleo treatment on my already damaged lungs, hallucinations, black outs, pleural rubs, more tests, more meds...and I don't realize I've heard NOTHING from the Leukemia and Lymphoma Society until months later when my brain seems to be trying to pull itself from it's chemo stupor.

When I call up, they tell me that I'm not eligible for the full "grant" I could have gotten because I'VE LET TIME LAPSE!!

Oh gee,  you think? Maybe some frequent correspondence from your end would have helped? I am the only person in my house during the day, and my Mother has no idea from these things. But it doesn't matter.

So I finally reapply, and they send me, JUNE 2013, and $84 check only for MEDS!!

I am so disappointed and disgusted that a cancer patient would have to go through this rollercoaster just for a little sense of peace that I would tell people just not to bother with LLS. They have one saving grace there, and I won't mention her name, but she can't even help me with this. 

So now, after more tests, a pending stem celltransplant, complete with a catheter placed in my jugular like fucking frankenstein, I guess I can use the $84 to go to and from queens and manhattan.

sorry for venting. I am so mad.

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