COBRA and Crosby

Crosby claim:

I started telling you as soon as I found out last week, and have told you repeatedly since, that my COBRA account is ending tomorrow (November 30, 2013). I've told you repeatedly to STOP AUTOMATICALLY WITHDRAWING PAYMENTS FROM MY PRIVATE BANK ACCOUNT!

But I just received a letter from you stating that, as of 11/30/13, you are raising my monthly premium rates to $109.83.

If you withdraw $109.83 from my private account in December, 2013, I will hire a lawyer and sue Crosby, not merely for $109.83, but for $10,983.00, for emotional pain and suffering.

I know that "health professionals" make their livings off of sick people, so you increase our stress to make sure we stay sick... I just hope YOU get to experience this stress one day. AND I HOPE YOU SUFFER!

Handicap restroom stalls

This started as a theme about handicap parking spots, to which I added:

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On a similar topic:

The handicap stalls in the rest room are for handicapped people. They are extra-large to leave room for scooters, wheelchairs, and walkers. They feature hand-rails so people with difficulty standing can safely sit and rise.

They are not extra-large so you have extra room to try on the dress you're considering - that's what the dressing room is for.

They often have sinks so handicapped people (who may be subject to embarrassing accidents) can clean themselves privately - not so that you can fix your makeup in private.

The seats are not high so that you can "feel like a queen" (yes, that's what I heard a non-handicapped gal use as her excuse for using the stall). They're not high to suit your long legs (your legs aren't that long!). They are higher than normal to make it possible for the handicapped to "transfer" (the medical term) from a transport device.

If you are using the handicap stall, and you're not handicapped, remember: as a result there may be a handicapped person in serious need, who may be less able than you are to "hold it".

Mind if I pee in your shoes?

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Lisa (who I know has MS) replied:

Sorry, Marion, but I beg to differ.

There are no laws which limit the use of handicap stalls. There are laws regarding the use of handicap parking. I don't see why handicap stalls should remain unused "just in case".

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To which I returned:

Lisa, I guess you don't have the standard MS bladder. (I know other handicaps that require similar support.)

If you'd ever risked heading home instead of waiting for the toilet, started peeing uncontrollably before you even opened your front door, peed down the hall to the bathroom (soaking your clothes from the waist down - including your shoes), dragged yourself barefoot and wrapped in a towel to your bedroom to find something dry to put on, threw yourself on the bed in total exhaustion, realizing that when you've recovered (in an hour or so, if you're lucky), you'd still have to wash the pee off the floor (in spite of usually having to hire a cleaner because you can't stand long enough to wash the floor)... and then burst into tears when you remembered that the front door was still wide open (with the key still in the lock)...

... maybe then you'd understand why disabled people need priority access to handicap stalls.

End-of-job/start-of-disability phone calls

On phone with the on-line pharmacy:
- (Me) My FSA will no longer be valid starting December 1, so is there a way I can receive and pay for my December shipment in November, so the co-pay will be covered by my FSA?

- (Me, in response to her question) No, I'm no longer an employee there. I've been on COBRA since July.

Many delays; finally forwarded to the COBRA expert - Surprise! A helpful person:

- (Her): Oh - so you're going on vacation in December (wink wink), so we'll send you the medication for December in November. Have a good vacation! Remember to pack enough clothes!

Meanwhile, I've learned not to assume that the people I'm talking with know what they're doing.

On the phone with the benefits folks:
- (Me): Please stop withdrawing money from my personal account to fund my FSA, because it's ending on 12/1
- (Her): My records say your FSA is ending on December 31.
- (Me): Really? How lovely! But could you please double-check? The Disability Officer told me yesterday that the FSA will no longer be valid as of 12/1. Are there any really new records that you may have missed?
- (Her, after some time on hold) Oh, you're right: your FSA will end as of 12/1.

... is that the end? No, I can't just phone and pull out of the automatic withdrawal... email first, and see what they'll demand next (and will they fix this before December 1?!)

Awards

I checked my 2012 SS report: The amount SSD is promising me is in line with the raise I got before MIT laid me off, so there's no reason to visit the SS office. The amount they've promised is the right amount.

So I phoned Prudential (MIT's Longterm Disability Program's agency) to tell them the amount, as they'd requested.

Thanks, the guy said. We'll need that figure, because we'll be reducing the amount we give you by the amount covered by SSD. [he tried to put it in a much more politic manner and got tangled, but that was the gist] Yes, you probably want to know: You've been accepted for the MIT program.

Can you work at all while receiving benefits? I'm not sure... hmm... I don't think so, but you should talk to people at MIT to be sure.

Is there anything else I can help you with today?

poison? razor?

Accelerated Cure Project volunteer spotlight

Lindsey of the ACP asked me if I'd be willing to be featured in their newsletter. Sure, I said, and wrote up a story answering the questions she asked. It was long... she'll trim it... but here's the original version I sent.

She asked:

• When did you first get involved with ACP, and why?
• Why did you decide to start Music to Cure MS? (describe a little of Music to Cure MS history and where it is today)
• What do you do to stay positive and motivated?
• Why would you recommend ACP as an organization to be involved with and volunteer at?

My answer:


I first heard about ACP in 2002, not long after it was incorporated (when it was still called The Boston Cure Project), and was intrigued: its goals and plans made so much sense! This was the most positive, active MS-related project I had run across. I wanted to do whatever I could to help.

I had studied music on a professional level, planning to perform opera. My MS diagnosis in 1988 made it clear to me that all the little problems and limitations which had been holding me back for decades were not going away - so it was time to find a new goal. Luckily, I already had experience as a stage director for opera and Gilbert & Sullivan, and it was easy to transition to a life as a stage director, concert organizer, and occasional concert soloist.

By the time I became aware of the ACP, the long hours required for directing were becoming too much for my MS-limited stamina - so it was time to find yet another goal. My desire to help the ACP looked like a good place to start.
I began contacting singers I'd worked with, seeking advice on creating a concert to benefit an organization fighting MS. The responses I got were not, "Is it worth the effort?", but, "When is it happening? What can I sing? How else can I help?"

As I've repeatedly found since starting this annual concert, mentioning MS to performers, audience members, sponsors, or others typically results in some people telling of friends or relatives with MS, and others admitting that they have it themselves. I visit local shops in the month before each concert, offering opportunities to publicize their businesses while supporting a nonprofit working for a worthy cause, and I find myself listening to stories of MS told by business owners who are eager to support us... while performers (including Barbara Quintiliani, the internationally-renowned soprano who performs in spite of her own MS) tell me their own stories. This is a key cause!

The first concert was held in October of 2003 in Arlington, MA. Our performance roster included over 20 solo and/or ensemble singers, three pianists, a 70+ voice children's’ choir, and a conductor. Our roster has shrunk to a more manageable size, but the concert keeps going. Every year I question whether it's worth doing again... and every year it's clear that everyone involved is looking forward to the next one.

We've never raised huge amounts. We've never enjoyed the overflowing audiences my performers deserve. But the concert is continuing, and always gaining new help.

Read about my first ideas in Boston Singers Resource: http://www.bostonsingersresource.org/resources/bsr-spotlights/marion-leeds-carroll/ and then see how the concert has grown over the years: http://singtocurems.org

You ask, what would your advice be for people newly diagnosed with MS?

• MS is different for everyone, and it changes for each MSer as the years go by. Enjoy what you have, don't mourn for what you've lost, and keep looking for the next good thing in your life.

You ask, what do you do to stay positive and motivated?

• I've fought depression all my life, since long before my dx. I often remind myself what I said when I was 19: "I have all eternity to find out what it's like to be dead, and only a few decades to find out what it's like to be alive." That's one thought that usually gets me over the worst spots. The second: making sure I have positive, happy people near me, doing positive activities, to keep me upbeat. Also essential: admitting my need for rest and solitude. (A friend shared this helpful Dilbert cartoon with me a couple of years ago: http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg)

You ask, why would you recommend ACP as an organization to be involved with and volunteer at?

• I'm tired of fundraising letters, calls and emails from organizations asking me to help them help MS sufferers. (Hello? I have MS myself, and rather than doing something for me, you're asking me to give you money? How can I be sure you're really supporting anyone besides your own paid staff?)

The ACP, on the other hand, doesn't claim to help individuals with MS. It sets out to support researchers as they ask hard questions, find good answers, and share their new knowledge, growing the data base the ACP set up and continues to build. (And we know the ACP, far from enriching itself on the project, is mostly led by volunteers.)

MS is incurable, progressive, and disabling, and we still don't really know what causes it. The ACP is focussed on solving problems that will help us all in the long run.