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

 

Welcome To The Neighborhood

The housing area that I live in consists of 108 units and only about 15 or so permanent residents. Of those 93 units, many are in a rental pool for snowbirds, border patrol or just used sporadically by their owners. Consequently, there is always a lot of activity as people from all over the US and Canada come and go on a regular basis. You can always tell which ones are the Canadians ~ they’re the ones out by the pool when us locals are still wearing sweatshirts.

As I live in an end unit, right across from the pool, I have a pretty good view of what’s going on if I care to. I admit, my inner Gladys Kravitz does sometimes rear her ugly head, and I sit and look out the window at the comings and goings of the people around me.

A couple of days ago, I had just finished cleaning the cat’s litter box and had a bag full of, well, cat shit that I was taking out to the trash can. I opened the gate and noticed some people unpacking their car across the street. Naturally, I very nonchalantly sauntered out down the path all the while spying on what they were doing. Naturally, I wasn’t paying attention to my feet (which require quite a bit of focused guidance) and naturally I stepped off the path onto the gravel and started to lose my balance.

I think I’ve made it pretty clear before that balance is no longer one of my strong suits. One tiny misstep and there is no going back. I’m sure my arms flailed and I may have grunted or cried out in some fashion, but next thing I know I’m lying on the ground with a rock lodged in my hip, my elbow bleeding and the bag of cat shit broken open and splayed all around me.

There is something about falling down that cracks me (and most people) up. I think it’s a combination of embarrassment and an element of buffoonery. There is also something scary about falling down (am I hurt?). And of course everyone’s very first reaction: “Did anyone see me do that!?”

So I’m laying there slightly giggling, with a few tears stinging my eyes, surrounded by cat doo, trying to assess the damage when I look up to see the new neighbor that I’d been staring at offer me her hand. What could I say? “I’m ok, really, thank you, I’m ok. I’m Gladys Kravitz, welcome to the neighborhood!”

Fast forward to Arizona

I have been remiss. I last posted in November of 2009, and here it is December 2010. I claim life as my excuse ~ I’ve been through a few changes. In no particular order: I went to Nicaragua with Lisa, I bought a condo and moved to Southern Arizona, I lost my job, I did about 5 weddings with Anna and Little Edens (www.littledens.com), I slept and slept and slept, I went zip lining, I applied for disability, I got a real estate license, I got my first (and probably only) steroid infusion, I joined a book club,  and yes, I rented a scooter.

I will post about all these individual and fascinating events, as well as become a more faithful and steadfast blogger as one of my 2011 New Year’s resolution. Hang onto your seats! It’s good to be back.

Back in the saddle, sort of…

I spent 5 days in NYC couple of weeks back. I was working a convention and had this genius idea that it might be good to get out of Javits and enjoy some fresh, crisp, October air by walking back the 6 blocks to the hotel. Six Avenue blocks. Six l-o-n-g, hot, avenue blocks. Six Oh My Stars what kind of fresh, crisp, hell have I just conscripted myself to blocks.

By the time I staggered into the hotel lobby like a piece of flabby meat jewelery on my boss’ arm, I was almost in tears. Mark, my boss, bless his heart suggested we sit and have a glass of wine and a quick bite to eat before starting on the evening line up of 2 client hosted parties. After a half hour and a nice cool glass of wine, a big glass of water and some bruschetta, I felt almost as good as new. Almost.

Cab downtown. No problem. Listen to some nice, mellow music through a world class microphone. No problem. Hydrate with lots of water. No problem. Get a cab back uptown. No problem. Stop at the corner of 59th street. Problem.

The cabbie says “Get out! Is only one block!”. Mark says to the driver, “No. My friend can’t walk. Take us where we need to go!” We are summarily cursed out in Sanskrit or something like it, as the driver throws the car in reverse, steps on the gas, and runs into a bicyclist. This being Manhattan, everyone from the pedestrians, the cyclist himself, and people at a bus stop are all screaming “Can’t you drive you fuckin’ idiot!?”” Watch where you’re going!” “Wassthematterwithyou!?” until the cyclists wobbles off after a few more choice words and some good smacks to the roof of the cab.

Surprisingly, this doesn’t put our driver in any better mood and he reiterates “Is only one block!”. Our resolve is strong though, so he mumbles further under his breath and puts on his blinker. Now remember, we are in Manhattan. Corner of 59th and 8th. What did he do? What anyone would do ~ try to pull a U-TURN across 4 lanes of traffic at a stopped intersection. And guess what!? Shocker ~ we were t-boned by another cab. Well, this other cabbie who hit us was not nearly as calm or pleasant as the guy on the bike. More cussing and name calling (in Swahili now I think) until our driver turns to us and says “IS ONLY ONE BLOCK!”.

At this point, I decide I might be able to walk the one block after all. After Mark asks him for a receipt (I kid you not ~ our company is tight about these things!) we make it to the next event. By now, it is almost 9:00 pm, close to the end of the party. I grab a nice big glass of wine (because by now I’m ready for a drink), and start snacking on cold crab cakes, soggy asparagus wrapped around prosciutto, and mushroom caps stuffed with substance (unidentified). That bruschetta seems a long time ago.

So here’s the set up: I’m really tired from being on my feet all day. I can’t really stand because I had to enjoy that crisp, fresh, October air and walk until I was crippled. I’ve had a big glass of wine. I’m kinda rattled from the cab accident. I’ve been eating nothing but appetizer dregs. So when the last man standing at the party suggests we smoke some weed, I think it’s an excellent idea. Pot is supposed to be good for people like me with MS, and I smoked some like 7 years ago, so figure I’m due. Yes. This definitely seems like just the ticket.

Fast forward 15 minutes. It’s time to head back to the hotel, since there is no one left but the catering staff, me, one other guy and the pot man. I think I gracefully twirl into the room from the patio, then think I do a perfect pirouette, and then know I land on my ass. I’m laughing so hard I’m crying, and who should I look up to see lending me a hand, but my client.

This is when I love the business I’m in. My gentle client has a laugh with me, sends me home in a cab and then tells me the next day to pretend it never happened. Much as I’d like to, I kind of think it’s better that I do remember it. I must remember that the 6 block walk killed me for almost a week. Maybe I should smoke some pot….?

October 19, 2009

La Crescenta, CA

Welcome

Hello, my name is Erika. Welcome to my blog! You’ve probably guessed already, that I have MS. (Who says we’re losing cognitive skills!?) The world might not need one more blog (ya think?), but I’m doing this for me. If you want to read along, welcome!

I’m 52 and live in La Crescenta, CA. No one had ever heard of La Crescenta until last month when the largest fire in the state’s history tore through here and we made national news. I live alone with 2 cats, Clark and Cleo; and have 2 grown daughters, Anna and Liza. I have a wonderful mom who is 89 and going strong; an older sister in Seattle, an older brother in Northern California and a total of 4 nephews. Ok, now you know all about me.

Oh yes. The MS thing. I had some very weird thing happen to my right eye when I was about 27 years old. I went to the Jules Stein Eye Institute here in LA because they thought it might be a detached retina. Hmmm….no. Maybe it’s this? Hmmm….no. Maybe it’s that? hmmmmm….no. So I was sent off to see a neurologist who pricked me with pins, hit me with rubber mallets and sent me home perplexed. Back in 1984, MS was not so prevalent? Easily diagnosed? I don’t know.

Fast forward to 2000. I’m jogging around the high school track with my young teenaged girls. Sweethearts that they are, they start teasing me for running like a 90 year old man with a dragging foot. Shaddyup! But they do have a point. So, like any well adjusted American, I quit running. Never did like it anyway.

Now it’s early 2001 and I’m up in Seattle visiting Lisa. We decided to go on a nice walk around the arboretum (it is lovely ~ go if you get the chance!). It’s an easy, flat walk, maybe a couple of miles. As we get back near her house there is this little gentle hill about two blocks long, and I tell her I can’t make it and need to rest. Did I forget to mention that Lisa is on her way in two weeks to run the NY Marathon? That’s she’s sailed through the Boston Marathon, like, 3 times? Needless to say, my sister becomes just a little bit alarmed. So on her gentle urging (YOU BETTER GET THAT CHECKED OUT SIS!) I went to my doctor. He sent me to a neurologist. The neurologist sent me to the MRI. The MRI sent me to the lab. The lab sent me back to the neurologist. He finally gave me something. A diagnosis of MS. WTF!?

October 19, 2009

La Crescenta, CA