State of Mind

The State of California has totally thrown me under the bus. I calculate that I have paid in the neighborhood of over $50,000 in income taxes over the past 10 years and have lived and worked there for most of my life. I’m 53, have been working for 35 of those years in California, and even not being very good with math, can figure out I’ve given the State a lot of money.

So when my 26 weeks of unemployment ran out, what did they do? They denied my extension and threw me over to Arizona where I now reside. Bless little Arizona, they are at best a poor cousin to their next door neighbor. I’m not surprised at the disparity…..honestly, Arizona charged me about 1/3 the amount for a drivers license as California and it’s good for like 20 years or something. No wonder they’re broke!

There are no physical UE offices here, so it all must be done by internet.  Ok, no problem. The online application asks some questions such as “have you worked out of state in the last 18 months”. I answer yes and am prompted to call in. I slogged through the phone system and finally got to an unemployment agent, and he was as nice as could be. Friendly with all the time in the world. After we discussed the SF Giants winning the 2010 World Series and his inherent dislike of the LA Dodgers because his parents were originally from SF and that’s such an age old rivalry even though he now lives in Arizona and is a Diamondbacks fan, he explained that I must file online.  I explained that the online prompts to me to call this number.  He explained back to me that I can’t file a claim without a PIN that can only be established online. Wow.

He gave me some super secret information which I will not divulge publicly here (I told him I had rooted for the Giants too, that must have done it), and I was in the system. So then I crawled back into the mire of the telephone system and waited and waited (and waited…and waited) until the next super nice agent came on. She and I had a nice long conversation about her niece who has MS and how her disability application was coming along, and how her aunt (the niece’s mom) got disability for just knee surgery and diabetes, not even anything like MS, yet the niece had been denied twice already.

I felt I was making good progress and it had only taken me about 3 hours so far. This nice lady filled out my application for me and told me it would take a few days for them to decide if I was approved or not, and I would find out by mail. Then a one week waiting period, and if things went well I could expect to start receiving a weekly check.

As you can no doubt ascertain from the amount of taxes I paid California, I was making some pretty good money back in the day. California pays out a pretty healthy weekly benefit…Arizona, not so much.

So now I have a new challenge. There are billions and billions of dollars in the global economy, and I need some of them. It’s time again to recreate myself and my wealth. Rule number one, be open to suggestions. I have some of my own nuggets, but anyone else have any ideas?

New Year Resolutions

I love the whole idea of New Year resolutions. Having a clean line of delineation between “before” and “after” is always so, well, defining.

“An Oreo? Oh heavens no, I don’t eat cookies anymore”. “Watch TV on a Saturday afternoon? Oh no, I only work out now on Saturdays, no more afternoon TV for me”. “Go to the mall? No thanks, I’m off to go call my mother, I do that religiously every weekend”. Ad infinitum. Since this last Saturday morning, Jan 1, 2011.

We all have the best of intentions in giving up our little personal illicit activities (ok, chocolate might not be that illicit…) but like many things, as we all know, we skip one day, which turns into 2, which turns into a month….

I’ve often wondered why it’s so hard to give up Chunky Monkey ice cream…why can’t broccoli or brussels sprouts be so alluring? “Damn, what a day ~ let’s put it behind us with some cauliflower!”

But on a more serious note….I can’t tell you what I would give to be able to fulfill a New Year resolution to go running every day. To walk a mile every morning. To learn to salsa dance. To go to work everyday brimming with energy (of course fortified with fresh fruit and an egg white omelet…no donuts here, that’s on my resolution list!).

But I can wake up every morning and breathe clean air, look around me, feel the sunshine on my skin, hear the birds yammering and be grateful for all those things. I can still read, write, eat, laugh and hirple.

I would like to challenge each of you reading this to stop for a second and be grateful for what you can do. If you can dance, walk, run, ski, hike, skip ~ go do it. Today. Now. Skip to work. Hop on one foot to the busstop. Dance your way through the day.

One day, you won’t be able to do those things anymore. Guaranteed. Don’t be someone who looks back on life and thinks “Crap. I wish I’d gone dancing and eaten more green beans.”  Be one of those people who looked at the line and crossed it with a belly full of vegetables, and an ice cream cone in hand, doing the limbo and then sliding into home plate.

Scootin’ along

Last year, prior to my blogging hiatus, I wrote about renting a scooter. Subsequently I promised to share that experience here, so let’s get to it.

NAMM. The National Association of Music Merchants as it used to be known, now called the International Music Products Association. This is a convention held each January in Anaheim, CA and it is the Holy Grail for musicians. Anybody who is (or wants to be) anybody finagles a pass for this trade event in order to check out the latest and greatest in gear, catch up with old friends, network and be seen. (Back in the old days we’d make up badge names to give to our friends like Dwight Mansburden, Mike Oxlong, and of course the Stitz sisters, Gloria and Norma ~ think on it, you’ll get them. But I digress….)

So after my NY debacle, this is where I opted to make my scooter debut. I rented this cool red number that was delivered to the Marriott for me. When the bellman rode it in, he looked pretty happy and a tiny bit smug, and at that point I wasn’t sure why. Whatever dude, here’s a couple of bucks, thank you very much.

I stopped and started and jerked it up to my room. Music hipsters, generally with attitude, held the elevator doors, asked others to wait, gave me big smiles and aided me in guiding my way up to my floor. I was genuinely warmed by their helpfulness, and quite frankly, a little surprised. I’d run into a lot of these same folks in previous years later at night and they were not nearly so genteel.

In the morning, I gathered my briefcase, computer, purse, media kits, a sweater and loaded up the buggy. I banged into every surface of the hotel room maneuvering out into the hall and finally got sorted out and on my way. The same ilk of hipsters (slightly less effusive on the dawn, but still helpful) got me down to the lobby and I was on my way. Once I got outside to a clear sidewalk, I got the bellman’s smirk. This sucker was fast!!

There was just one tiny problem. In addition to being fast, it had a hair trigger going both forward and backward. My fingers have a tendency to be a little numb all the time, so I couldn’t always tell how much juice I was giving, or which direction (forward or backward) I was going. No matter, let’s get on with it!

I pulled into our booth where our marketing manager Kirby was suitably impressed (and I think a little jealous) when he saw my cool ride. Showing off a little, I gunned it, and proceeded to go through the wall of our booth right into the one behind us. Uh oh. I was laughing so hard I was crying. A nice, tiny, foreign woman came around the corner apologizing for her booth having been in the way and Kirby shooed me off while he took matters into his very capable hands. I felt I was off to an auspicious start. (In hindsight, I was laid off 2 months later, so perhaps it wasn’t so auspicious after all).

At any rate, I had a wonderful time motoring around as did my clients. This was my 29th NAMM show (as in yes, I attended my first show in 1981) so of course there was a lot of meeting with old friends, who all wanted to take a spin. My friends John and Dusty really took it for all it was worth and raced around the convention center sending attendees scattering. It was joyful to watch.

I was sorry on my final day to turn it back into the bellman (who was happy to see me, and now I knew why). Not only did I feel remarkably refreshed after a 5 day convention, but I had discovered a new side to the  humanity of NAMMsters.

I made myself a deal years ago that I wouldn’t go to NAMM for 30 years  (egad ~ an old rockster, the worst!) and thanks to the alignment of stars and endless management changes at my old company, I will not be attending this month. That is a relief, but I must admit, after finally taking the scooter plunge, I was kind of looking forward to again hurtling around on that bitchin’ red scooter, as I’m sure were Dusty and John.

A hop, a skip and and a hirple

I play a lot of online Scrabble on Facebook (called Lexulous) with my mom and I cheat. I use one of those word generator web sites that help you put your letters together into words most people have never heard of, let alone used in a sentence.

In order to make myself feel better, I always look the word up though (so if Mom questions me I can say, with confidence, “oh, what a childish jape they played on her!”). So imagine my utter delight in discovering the word hirple.

To hirple is to walk with a limp. It also has the distinguishable honor of being one of two words that rhyme with purple (the other being curple ~ you look that one up).

Naturally, I prefer hirple to limp. So does my Mom, who at 90, has just recently started using a walking device ~ we now prefer to go on hirples together, rather than plain old walks.

You won’t find it in every dictionary (although apparently it is in the OED, the grandaddy of all dictionaries). Lest you don’t  believe me, it can be found in the Urban Dictionary and MSN Encarta:

http://www.urbandictionary.com/define.php?term=hirple

http://encarta.msn.com/dictionary_561509841/hirple.html

Please add hirple to your daily vocabulary and let’s see if we can get it to rejoin all the English dictionaries out there. I would hate to see such a fantastic word disappear completely from our lexicon.

Roid Rage

I went for the usual visit to my neurologist in LA over Thanksgiving week: walk on tip toes, walk on tip toes backwards, walk heel to toe, walk heel to toe backwards, close eyes and touch nose, determine soft (a Q-tip) from sharp (a safety pin), jerk around from the little rubber mallet hitting knees and elbows. I always imagine this is what getting a drunk test must be like. It seems to me that a big disease with it’s own initials  (MS!) should have a more intricate and serious seeming examination to go along with it. Q-tips, safety pins and rubber mallets seems so amateur somehow…like we’re just playing doctor patient.

So, when Dr. S. suggests I go for a steroid infusion treatment (since I  didn’t do so well on the walking parts of the test), I’m happy to play along with the game. 3 hours a day for 5 days getting a slow drip of something called solu-medrol, sure!

The first day was cake. I snuggled into warmed blankets and watched I Love Lucy reruns while eating the proffered snacks from a little basket and drinking fresh hot cappuccino made on site for me by the nurse on duty. This place in Pasadena is a 5 star infusion center!

Day 2, again, not so bad. It being Thanksgiving Day, I was moved to a different part of the clinic without a nurse dedicated solely to my whims, but I was in the glow of actually having been able to stand on one leg without falling over last night. Victory!

Day three. My friend Kate came by and we got to catch up which was great. I regaled her with stories of how I had played Cranium with some friends the night before and was able to actually act out the “break dancing/belly dancing/line dancing” card! Geez, I can’t even remember the last time I was break dancing. All was going well.

Day 4, Anna came with me and we ordered in Thai food and played with embroidery thread (totally different story). I started getting pretty tired of being hooked up to this infusion bag and beginning to feel just a little bit grumpy.

Day 5. Enough already. Get this f$%*ing bag outta my arm. No thanks, I don’t want any of your stupid snacks. I already had coffee this morning, thanks. I ended up playing Angry Birds for 3 hours and then fled.

I spent the night over at Elizabeth’s house, and then got up early for the drive back to Arizona. I had a good book on tape and there wasn’t much traffic, so the drive home was uneventful. I got back around 4, had a shower and fell dead asleep around 6. Imagine my surprise when I awoke 14 hours later! I thought steroids caused insomnia!? Well good on me, they had the opposite effect.

Despite the long sleep, I woke up in one very bad mood. Apparently, major doses of steroids like I had just been through causes your body to stop producing them naturally (I know, I know….you’re thinking geez, Erika, you didn’t look into this before? No, I did not. We were just playing doctor I thought). This predicates the need to give one more artificial steroids in the form of Prednisone.

Prednisone is one nasty drug. I spent an entire week shut inside, unbathed, sneering and plotting ways to maim things ~ my friends, my cats, my car, my couch ~ anything. I just wanted to…well….maim something. I stopped answering the phone. I stopped showering. I stopped going outside. I stopped reading. I finally called Dr. S.’s office and explained that my former sunshiney self had abandoned me and that I had become nothing but an angry maiming plotter. He prescribed Ativan.

Oh boy. Now I was playing in the big leagues. Solu-medrol. Prednisone. Ativan. I don’t like taking any medicine beyond red wine. I do the daily injection of Copaxone and I figure that’s plenty. I opted to skip the Ativan, finish the weaning off the Prednisone, and go back to red wine.

Now a month later, here I am, still not walking all that steady, but back to my old happy self. I’ve realized that although MS has been roaming around my proverbial house for over 20 years, this last “treatment” gave it a prominent seat at the head of the table and quite frankly, it pissed me off. I will give  MS it’s due and respect that it’s here, but also firmly request that it stay off the center stage.

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