Lucy in the Sky

I was born in 1957, which put me pretty much smack dab into the middle of high school when it was cool to be a hippie. I didn’t let the grass grow under the platitude of “peace, love, sell some incense”. I ate it up. Long hair parted down the middle, abalone shell necklace on a leather thong, natural wool dyed hats, Joni Mitchell, hairy legs…bring it on.

I had just missed the drug induced 60s (“if you remember the 60s, you weren’t there”), but there was still plenty of pot and things around in my world. A “lid” of pot was about $10 and smelled mainly and suspiciously of lawn clippings. Never was my deal and still isn’t. (MS bonus = medical marijuana, but despite the slight, yet coveted, “bad girl” image it invokes, I just can’t go there.)

So along comes MS. Early symptoms around 26, final diagnosis at 43. My hippie persona was well behind me (six figure salary, BMW, Prada perfume, $100 haircuts, W Hotel).  I had luckily survived the music industry during the crazy 80s and 90s and my drug of choice was now a solid  $30 bottle of Pinot Noir.

Welcome Copaxone. Ew. Are you fucking kidding me? A DAILY injection? As I’ve chronicled here before, it’s an uncomfortable, lumpy, burny, creepy, bummer. And it’s like, wow, a MONDO drug. Not only that, but to be 100% honest here, I still really don’t have a clue what the heck it does or how it works after 12 years (that’s well over 4,000 shots). It also now costs over $4,000 per month (thank you health insurance and co-pay assistance!). Huh. I haven’t done the math before….holy cow!!! I had gone from sanctimoniously turning away from lawn clippings, to daily injections of drugs I imagine are more expensive than the finest grade of heroin.

But back to my hippie roots. I’ve discovered that since I’ve had to quit my high powered, super fun, big dollar, high pressure job and been forced to slow down and nap, hirple and read all day that I’m starting to pull out the Joni MItchell, quit dying my hair, and only occasionally dabbing on some left over Prada. I’m now reduced to $10  boxed wine – mainly because of financial issues, but also because it is much more eco friendly……

The proverbial drug cat got out of the bag though. My doctor has given me valium to take when the spasticity is bad or I’m feeling a little too anxious. I take a statin for high cholesterol as I can’t exercise enough to get it down naturally. I take a nightly dose of antibiotic to counteract UTIs caused by catheterizing. You get the idea.

I’ll continue to recycle. I’ll continue to conserve energy. I’ll continue to eat organic. But, I think a little chemical help is warranted and welcome thanks to this interloper – MS.

Illustration by Hizza Siller

 

Ready, Set…..

It appears my SSDI has been approved! Yay! I am so relieved! The letter showed up yesterday, along with a very official findings report (all findings favorable – love that word – favorable).

Thanks to all my friends and family for the mental, emotional and financial support during this long process. I am grateful and humbled every day by the wonderful people in my life.

Oh, and one of the official findings? Even in government speak, it seems I’m long in the tooth. Sigh.

Harrumph

I just got off the phone with an old and dear friend who’s in LA for the Grammys (congrats again, B!) and I realized in speaking with him that I am in very strange place right now. It became clear to me that this SSI thing is really hanging over my head, more than I have given credence to. (Is that even grammatically a sentence? For that matter, is that last sentence even grammatically correct? See? Proof I’m losing my grip).

Several things are very different. There’s a cumulative effect over the past 18 months of 1) not working, 2) not earning boatloads of money, 3)  being this physically hindered (hirpling, fatigue, etc). 4) laying this low. Number 4 is based on numbers 1-3 and not feeling very sociable (What, me? You laugh, but it’s true).

And then of course, there’s a fifth thing, which is effectively being called a liar by the Federal government. That can sure take the wind out of your sails. Makes me wish I’d cheated on my taxes ~ at least just once. The net result is I’m feeling kind of low. Not depressed so much as just kind of bewildered.

This looming melancholia might only be the result of poor sleep and a rain storm. Or I might just give it to myself this time and accept that I’m justified in feeling a bit blue. Chances are good tomorrow I’ll be sunshiny, again with a hint of a lilt in my hirple.

Round 3

So I got my letter from SSDI in October turning me down again for disability insurance. Next step: find an attorney and schedule a hearing.

The first guy was recommended by a web site dedicated to lawyers that specialize in disability cases. Whoo boy. Armed with a recommendation in hand, Anna and I went to see a guy in Glendale named Mr. W. I googled him prior the appointment, and found out he had been practicing law since BEFORE I was born. I am no spring chicken, so I figured he’d either be super experienced or practically senile.  He was practically senile.

The office looked like an episode of Lawyer Hoarders. One whole office was so crammed with ancient case files and old copy machines that you could barely see in the door. The guy had a handler for pete’s sake! “Mr.W. will see you now”. Ok….he then proceeded to ask me three times when I had quit working; five times what it was I had done for work; and then deny a call from “one of these new fangled cell phones”. Wow.

Needless to say, we moved along pretty quickly from that appointment. The next one was with a guy named Mr. P. He was great. He knew the law inside and out, has been lecturing on it for 30 years and had a great sense of humor (very important to me, obviously). He was positively gleeful with the side effects of my various medications and treatments, and told me he was confident that based on my being a bit “long in the tooth” (no kidding, he said that to me!) and my history of MS treatments and symptoms, a settlement for benefits was likely. Phew.

So now I wait for a hearing date, and assuming all hell doesn’t break loose and the creeks don’t rise, this will all be behind me by the end of 2012.