Work Work Work

I started working right out of high school. I couldn’t wait to get a job and get earning. I had a job at a wonderful bookstore called Rackstraw Books in Danville, CA, then went to work at a nursery called Navelets in Walnut Creek, CA (in retrospect, books and plants, duh!). The college thing never really set right with me, I did a stint at Diablo Valley College and then College of the Redwoods in Humboldt county. I didn’t do so well there, I remember taking a class in mime…the premise of the course being that you didn’t speak. Wait, what!? I can’t talk!!?? I don’t think so. As you can probably guess, I flunked.

So I went into retail. Pier 1 imports in San Francisco. We sold live fish at the time. I would get up early and drive to SFO and pick up containers of live tetras and such and drive them back to Geary street and deliver them into these endless tanks we maintained. Talk about pressure! They died as fast as we could get them from my car into the tanks. We had salt water tanks – beautiful lion fish, parrot fish, starfish… I still remember the usually useless rush to save these beauties, so displaced from their native environs, into the inevitable too cool living rooms of upwardly mobile wanna be hipsters .

Moving on. Don Wehr’s Music City. I answered an ad in the SF Chronicle for a seasonal cashier over the holidays. This one changed my life. I met my future husband, father of my children and the start of my career in the music biz. The mid 1970s. What a place! What a time!

I then went on to advertising, then marketing, then sales with many of the finest companies in the pro audio industry. I finally ended up after 10 years with my dream job working for the pinnacle publication in the audio industry. The joy! I loved and excelled at this job for 10  years rising to publisher and loving every minute of it.

Then the MS decided to really kick in. Faithful readers know that story, so here I am now: mid 50’s, unemployed, confirmed disabled. My physical abilities have definitely changed, but thankfully the old  brain chugs along. So NOW what to do? I’ve always been a big volunteering sort, so this was an obvious avenue. Subsequently, I’ve ventured back into the job market and  now have two positions.

First job: working at the NMSS society. I love this job. One 4 hour shift per week, most weeks, fits the bill. I get to focus on helping hirplers (I made that up, I like it) and overall have met some wonderful people. I can utilize my skills, in an unbelievably supportive environment, all for a cause I obviously care deeply about.

Second job: cashiering at a local hospital thrift store. Again, an amazing (albeit a very different and eclectic) group, all with the most wonderful intent. I follow in my Mom’s steps on this one, I love hearing her stories of working at the hospice shop in Lakeport where she lives and worked. Rarely a dull moment here either, which suits me fine.

As I look back, my highfalutin career was a blast. It sustained me, educated me, excited me and wore me out. This new, 2 day, part time schedule is just about enough for me ~ my full time job remains napping. I’ve enjoyed the ride I’ve been on, but at the end of every roller coaster ride should be a smooth, hopefully uneventful, cruise back into home base.

Trials and Tribulations

There isn’t anyone, anywhere that would argue that swimming and pool exercises are probably good for someone with MS. The gentle support of the water, the cooling effect on a hot day, all the ducks are in a row. I discovered something though ~ I don’t really like being in the water.

There are several reasons. If I even so much at put my toe in the water, I get water in my ears for 12 hours which is extremely annoying.  Since I can’t work out like the old days; am turning 54 in a few weeks; and have no plans to give up wine, my body doesn’t look so hot in a bathing suit anymore. I don’t like squeezing my substantial bits into some tight rouched (read slimming) slice of spandex. And then there is the hideous sensation of peeling the thing off post swim ~ yuck.

Also high on the list is the whole shaving thing. I’ve never actually met a woman who enjoys shaving, but it is another one of those seemingly no brainer tasks that becomes quite challenging with MS.

I assume I can thank my Scandinavian heritage for the fact that I am pelted like Sasquatch. The fact that I am single and unemployed, precludes the outlay of cash for waxing. The nether regions are safe from view with the exception of the rare occasion when I actually do don the tortuous bathing suit, and of course I live in shorts because I live in the desert. Consequently, I need to tackle the project of shaving at least once per week.

Oh sure, big deal. Lather up, scrape it off, have a Pepsi. Not so. I’m constantly thinking up clever ways to get the task accomplished. I swing one leg up and hang on to the shower bar with a death grip until I start to fall over. I just lean down like the old days and get so dizzy I think I’m going to pass out. I sit on the toilet and put a towel down on the floor. The best practice seems to be to go outside (this is when I’m thankful it’s a zillion degrees here), pull up a chair, a razor, some cream and the garden hose. Oh sure, the cold water sends my legs into fits of spasticity, but the net result is doubled: freshly shaven legs and a freshly watered garden.

Now, that is multitasking!

Roller coaster…

I haven’t posted in some time due to house guests, another trip to CA, taxes, etc. but I think the main reason is I’ve been processing ~ deeply processing.

You see, after I got turned down for disability I did a bunch of research on things. The unhappy statistics I uncovered included that first time applicants were turned down something like 60% of the time, and 2nd time reconsideration applications were turned down 85% of the time. Shit. Not good odds.

I also was counseled to look up attorneys on this certain website and see how they stacked up with peers and clients. So I Googled and researched and emailed and Googled until my poor numb fingers were like cold dead fish. The net result is I’m filing my appeal myself with the help of some great books (thanks Robin and Rudy!); some A-one letter writing coaching from a friend who has worked extensively in disability law (you know who you are); and lots of good advice from the National MS Society website.

I found an attorney here in Tucson who comes very highly rated by the lawyer/peer rating and also also by friends here who have used him. I figure if I have to take this one step further to a judge, I want someone local rather than some slicker from NJ.

That decision having been made, I hirpled down to the SS office in Nogales to get some application paperwork (the filing online website being inoperable for some reason). I met with a very nice lady who set me up with what I needed. In the course of the conversation, I asked her a question: If the state sees me as disabled (so no unemployment benefits) yet the Federal government does NOT see me as disabled (so no SS benefits) then what the fuck does she suggest I do for some income!? (Ok, that was my inside voice. I actually asked her very politely).

She suggested I head around the corner to the Arizona Department of Economic Security. This is where the pondering and the processing started.

I went in and grabbed an application. Apparently, with zero income, I am conceivably eligible for food stamps and state subsidized health care.

Hmmm…..let’s look at this for a minute.  I own 2 homes. I own a car (a BMW no less). I have money in the bank. I have a stock portfolio. I have no debt beyond my mortgages.I have MS. I have no income. I have limited physical energy resources. I hirple. I’ve paid into the system and played by all the rules for almost 40 years. I don’t think I should be forced into living in squalor before I get the help I believe I’m due.

Anyway. I take note of my surroundings and one very stark and striking fact becomes clear:  I am the only non-Hispanic person in the room. When I take my application up to the clerk she says to me, “is this for YOU?!” I assure her that it is, take my seat and jump on a roller coaster of emotions that, in no particular order, go like this:

Anger, humiliation, fear, righteousness, embarrassment, fury, shame, frustration, sadness, pity and mortification. That’s off the top of my head. At one point I wanted to scream. At one point I wanted to be deified. At one point I started to cry.

I’m not a big fan of “Why Me”, I mean, heck, “Why Not Me?”. This however was one major eye-opening experience. The gamut of emotions and thoughts that ran through my head included some that I am too ashamed of myself to admit here publicly. One big take away for me was this: every politician from your local rural mayor to Mr. Obama himself should all be required to enter into this system for even just an hour or so. It is extremely humbling, to say the very least.

God bless America, I think.

 

And the Verdict Is In……

Well I got some good news today. Turns out that despite the MS diagnosis, the baclofen, the 3 day naps, the walker, the hirple, the walking stick, the solu-medrol infusion, the hand numbness, the scooter, the endless Dr appointments, the tripping, and the exhaustion, according to the US government I am not disabled after all. Whew! What a relief!

In spite of receiving this happy missive this morning in the mail, it prompted somewhat of a mini-melt down on my part. Fair enough, I think. There went Plan A out the window and for the first time I felt hopeless, frustrated and quite frankly, afraid. Egad, now what!?

I will sort this out. It will take time, patience, perseverance, smarts and not a little cunning. I need to let the state of Arizona know ~ maybe they’ll take me off their disabled list since Uncle Sam says it isn’t so? A little unemployment aid would come in handy right now….

In the meantime, now that I am able, I think I am going to go for a run. Or wait….maybe just a hirple with my walker instead.

Plan B

My brother Dave called me the other night. He’d been reading my blog and was alarmed on my behalf that I have no income. Rightly so. I’m a little bit alarmed too. Unfortunately, when he called, I was suffering from some back pain ~ apparently I pulled a muscle while sleeping. Really? How the hell does that happen? I am totally down (albeit really bored) with having MS, but back pain? No way.  Although the pain is now mostly gone (it’s easing it’s way down my leg and out my toes), it has left me a little grumpy.

Now Dave was asking me if I have a Plan B. That got me thinking, do I even have a working Plan A? I suppose it is to get approved for Federal SS disability and work part time marketing produce (which I’m finding I really enjoy), consulting with my brother-in-law on his fishing websites, the occasional wedding with Anna, and of course, the ever profitable cow headbands.

Plan B. Finding, falling and marrying a rich rancher. Winning the lottery. Discovering uranium under my floorboards. Actually Plan B looks pretty much like Plan A, only more of it. Work. Work. Work. I’ll get my piece of that 50 trillion dollars Dave, don’t you worry.

The Best Time

It’s been 10 months since I was laid off from my cushy, six figure job, that I really no longer enjoyed, nor excelled at. Despite going from $10,000 per month to $0 per month income, I am having the best time!

I think it’s because I am learning again, so consequently I feel energized and engaged in my life. Granted, it can be a little scary some days, but due to good planning on my part (I surprised even myself) I still have some time before I need to move into my car.

Writing this blog has proven to be one of my favorite activities. In just one month I’ve had over 725 unique visitors (that’s pretty darn good!) and am now rated on Alexa.com at 18,279,024. Google better watch out~ I’m coming up from behind! Lisa is encouraging me to monetize and has sent me some very interesting and exciting articles on how to do that, so check in early and often please to keep those traffic numbers growing!

In addition to blogging and making headbands with Anna, I’m also writing for some friend’s websites (construction and real estate). Anna and I are doing floral arrangements for a wedding next weekend in California. My good friend V. from Nogales is teaching me about produce marketing which I’m finding really fun ~ it’s a nice change from microphones. That being said, one of my old partners in crime is looking into some opportunities he might have available for me back in the music/pro audio world; and my brother in law wants to tap into some of my advertising brain power for his commercial fishing websites.

See? Doesn’t that sound way more fun than doing the same job year after year for a big, feckless corporation that changes management like the oil in your car? As I’ve said before, with the global economy worth somewhere in the neighborhood of 50 trillion USD (that’s $50,000,000,000,000) snagging a little piece of it to cover my ass-ets doesn’t seem too daunting now, does it?

As I Hirple Along, Singing a Song: Updates on Cows, Disability, Unemployment and More….

I was just reading some past posts and figured anyone following this blog must be dying for some follow up info, so:

1. 10 cow headbands almost drove Anna mad. She made them, she grumbled, and now we’ve gotten  an order for monkey headbands. I kid you not. The good news is the horseheads sold, as did 8 others in addition to the custom order cow headbands, so now we are both getting ready to retire. Monkey headbands, really? This is the gravy order, no doubt.

2. The follow up to the solu-medrol is a new prescription for a muscle relaxant called Baclofen which apparently is specifically for MS patients who hirple. I just started it and will post as I progress…but I think it might be working already ~ I WALKED .60 MILES TODAY with only a walking stick! This is huge and I am happy!

3. Arizona sent me a letter confirming that I cannot get unemployment as I am disabled. Huh. Ok, so with no Fed decision yet, I am getting exactly ZERO help from any of the entities that I have paid into for 35 years. Something feels very wrong with this system.

4. Believe it or not, I found fresh Dungeness crab at the Tubac Market last night and as it is one of my favorite things in life, I bought one as a treat. Last night was the famous Lopez red sauce with a baguette and sauteed spinach, tonight is a carrot soup with Dungee crab…can’t wait for this! In the process I found this really cool food blog. Here is the recipe: http://butterpluscream.blogspot.com/2010/02/carrot-soup-with-dungeness-crab.html

Moo!

Not sure if it’s post holiday blahs or what, but feeling a general sense of malaise and ennui the last few days. Perhaps I’m still just gnashing my teeth over the feeling of violation by Dr. S. Per his request, I had the reports of my last first and last MRIs (2002 and 2008) sent over to him, so we’ll wait and see what my verdict is.

I’ve been spending my time doing some writing for a couple of web sites and making felt creations to sell at my friend’s studio. Anna made a bunch of money over the holidays, so I’m stealing her ideas and creating  headbands with little felt flower designs on them. I made $40 in one day, so I think we’re on to something here.

One lady bought a headband with a cat design on it and then requested one with a horse head on it. Oh, shit. A horse head? Really? I sent that request over to Anna and she came up with the most fabulous design. I showed that to another woman, who then said, “Oh I love it! Can she make me a cow? I’ll take 10 of them.”

So California can throw me under the bus, Arizona can kick me to the curb why they decide what to do with me, SSD can wind me up and send me in circles ~ but damn it ~ I’ll show them all up and survive by living on felt cow headbands.

Criminal Mind

I drove to an urgent care center on the south side of Tucson today to meet with Dr. S for my physical eligibility interview for SS disability. Kind of weird, but whatever.

He was an older man of Hispanic descent. Sort of a bad toupee type wearing brogans and a striped shirt. We share some discourse on how long I’ve had MS, how it affects me, symptoms, side effects, medications, etc.

He proceeds to ask me why I moved to Tubac. I don’t know, needed a change, ready to get out of LA, blah, blah. What did I do exactly? Why did I move to Tubac, again?

I begin to feel a little bit uncomfortable. What f’ing difference does it make why I moved to Tubac? He gets this sort of Dr. God attitude and continues to question me like I’m there on a murder rap or something, yet at the same time like he’s a serial peeping Tom, undressing me with his eyes.

It totally creeped me out. Where does Lopez come from? Why’d you get divorced? You never remarried? How old are your children? Do they live with you? Do they have boyfriends? Are you a grandmother yet? It makes no sense you left LA. Why’d you move to Tubac again?

Maybe as a State employed examiner, he is suspect of people applying for disability. I felt like he should work for the TSA ~ you know those guys that stare you straight in the eye while they open your suitcase and fondle your underwear for contraband. C-R-E-E-P-Y.

I am not a criminal for pete’s sake. I am a solid tax payer with a few bad genes and I need and deserve some help, that I have paid for!

I came home and took a shower. It infuriates me that this bitter man (who obviously wishes he lived in Tubac!?) holds the keys to my financial future and lords it over me with a smirk and inappropriate prodding questions….argh! I am mad as a wet hen. I do not think I should feel totally violated from a physical examination (which thankfully I did not have to undress for!) regarding the level of my disability.

Along with the summons for the exam was a service evaluation. Bring it on!

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?