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.

 

Cat Scratch Fever

Today I’m feeling just disconnected and at sea. Disability attorneys. Paperwork. CASDI. Doctor’s reports. Forms. SSDI. Health insurance. More forms. More paperwork. And really, what the hell do I know about hiring attorneys and filling out government forms? I probably shouldn’t say this out loud, but it is b-o-r-i-n-g, to say the least. And extremely overwhelming, too. Blech.

Overseeing this endless computer drudge are Cleo and Clark. Now Clark likes to sit on my lap and look fabulous while I’m trying to type. Cleo on other hand, is a scrappy, bitter hag of a cat. She does this spooky staring thing that just creeps me out. She meows really loudly and persistently. If you try to touch her however, she hisses, growls, spits, scratches and basically is just one old grumpy gal. Considering she’s pushing 17 or so (what’s that in cat years, like 300?) I imagine I’d feel pretty bitter too.

One day she was boring holes into the back of my head when I was making bread using a mixer. I became so frazzled that I lifted the paddle out of the mixer while it was still powered on and bread dough went flying all over the kitchen ~ floors, ceiling, counters, cabinets.  This made me more than a little nuts, so I threw her outside where she proceeded to ensconce herself  on the doorstep of the glass paned door and STARE at me some more. I closed the shade and considered a shot of scotch. This cat unnerves me!

Cleo adores Kate. Whenever she comes to visit that cat is the nicest, sweetest little kitty you’ve ever met. I keep trying to get Kate to take her back to California which she declines to do, because I think deep down, my friend knows she really is possessed by demons.

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.

More Scootin’ Along ~ Guest Post by Steven Miller

My friend Steven is one of my very best friends. He has his own health issues and certainly his very own style of wit. He offers this guest blog ~ hopefully his first of many! Without further ado, welcome Steven!

More Scootin’ Along

My name is Steven and I do not have MS. I am a music producer and consider Erika one of my very closest friends. The NAMM convention she describes in her “Scootin’ Along” story is one of the most noisy and physically exhausting environments I have ever encountered. I have always marveled at those had to endure the non stop madness for days on end.

Manny’s Music in New York City is perhaps the most famous music store in the US. On any given Saturday, the store is jam packed with 30 guitar shredding kids plugged into amps turned up to 10, 20 or more; drummers violently assaulting various kits and congas; and countless folks pounding on a vast array of keyboards and synthesizers. Add to that trumpets and trombones blaring, and well, you get the picture. The sheer cacophony is simply astonishing.

Now, imagine that x 1,000!!!!! That is the mind numbing experience known as NAMM. Good luck trying to hear anyone talk to you unless their mouth happens to be no more than 4 inches from your ear.

As an attendee, my limit was 1 day for about 3 hours max. Any more than that and your brain throws up the white flag before completely shutting down. Even if you don’t touch alcohol, I guarantee that you need at least a few drinks just to come back to earth after even just 3 hours in the convention center.

As luck would have it, I developed a music software product a few years ago, and you guessed it. My NAMM status immediately morphed from attendee to vendor. From that point on, I would no longer have the luxury of leaving when I reached the breaking point. I now had to demonstrate my product every second of every day!

While I was bemoaning this situation to Erika, we were also discussing her upcoming NAMM reality – introducing a red scooter as her newest and most eye catching fashion statement since a particularly alluring blue silk number that used to attract potential clients by the dozen.

While I do not have MS, I am afflicted with a severe back ailment that sometimes requires weeks of uninterrupted bed rest. I count myself very fortunate when I can get through any 24 period without crippling pain. The catch is that I never know what is going to transform a good day into a bad one. Sometimes it is a cough, sometimes it’s just lifting the lightest of items off a desk, and sometimes it’s simply turning my head the wrong way.

Near the end the first day of NAMM, I was in the midst of my umpteenth product demonstration when I spotted Erika’s red scooter rounding the corner to the isle I was situated. While trying to simultaneously keep eye contract  with my audience and the various computer screens that contained my demo material, I couldn’t help but notice that the scooter was heading straight into 4 foot tall stand that held a large speaker.

Knowing she had laid waste to one booth already, I was not eager to see her plow into this thing and have a 75 pound speaker come crashing down on top of her. I thought that maybe she would eventually recognize her predicament, but unfortunately was distracted by industry friends wanting to greet her and the red scooter.

Time was running out and impact was imminent. On top of this, I was still conducting my demonstration while trying to figure out how to stop this disaster. Luckily, I caught the eye of an assistant and simply said “Erika.” With that, I turned my head to the left to point out the situation that the assistant needed to deal with. To my shock and dismay though, the act of quickly flinging my head hit the proverbial spinal jackpot – sending excruciating pain throughout my body and almost launching me out of the high stool I was sitting on.

At that same moment, blood curdling screams and all forms of low brow expletives came roaring out of my mouth at a high pitched squeal. And if that wasn’t enough, I was wearing a headset microphone for the demonstration that was being pumped into some good sized speakers.

Apparently, this all added up to cause the volume of my amplified voice to be far and away the loudest element in the already deafeningly loud convention center hall. This became clear when virtually all time and space stopped momentarily. The hall became like one of those classic EF Hutton commercials – “When EF Hutton speaks, everyone listens.” Suddenly, you could hear a pin drop. It was like someone hit the mute button of the TV set and everyone just stood in place.

And funny enough, even though this was hardly how I planned it, my outrageous pain did at least serve the initially intended purpose. Erika did slam on the breaks as everything and everyone around her stopped in their tracks. So while she avoided deadly contact with one of JBL’s newest speakers, I was writhing in pain directly in front of 40-50 people who still were interested in the finer points of my software product.

When calm was restored, Erika asked what all the fuss was about. As it turns out, she had no idea how close she was to disaster. Even in my highly diminished state, I had to laugh. But the funniest thing though was, at that point, I needed the scooter just as much as she did! Although she declined to lend it to me, I did forgive her.

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

News from Bedrock

I’ve been staying with Anna and Chad over the last week in California as I had appointments both with Dr. G for more bladder stuff, and Dr. S for a check up post solu-medrol infusion in November.  Yesterday morning on my last day there, I was sleeping dreamily in their very comfortable guest bed when my cell phone rang. It was an Arizona number that I didn’t recognize, so I picked it up with a sleepy “hello”.

“EL-LO? EL-LO? AIR-EEK-HA?” Oh my god. It was Dr. S from Tucson, the creepy Dr. who gave me the social security disability exam. WTF does he want? He talks like Fred Flinstone with a thick accent (Spanish or Mexican). Imagine Fred letting the cat out and getting locked out and yelling “WHEELMA! WHEELMA!” and you get the idea. Then he adds “OHHH, OHHH, UMMM” at the end of each statement. And as is hopefully conveyed by the ALL CAPS, he talks really loudly. Yet, he doesn’t listen at all.

He goes on to yell at me that I had promised to send him previous MRI reports and accuse me of not sending them. I informed him that, indeed, I had had them faxed over the very next day. “I DIDN’T GET THEM. THEY ARE NOT HERE ANYWHERE.” I reiterate that they were sent over that very next day.”OHHHH, OHHHH, WELL I LOOK FOR THEM. NO THEY ARE NOT HERE.”

Now, in addition to waking up in this alarming manner, I am also disturbed by the news that he has not sent in the report to the SS administration. I spoke with someone there last week who informed me that they had all the necessary information and would be making a decision by February 15. Based on what I wonder?

I inform Dr S. that I will have them faxed over again. “YOU DON’T HAVE THEM? OHHHH, UMMM. YOUR DOCTOR IN CAL-E-FORN-E-A HAS THEM? UMMM. OHHHH. YOU DON’T HAVE THEM?”

I’m rolling my eyes until they’re about to fall out of my head and gritting my teeth so hard they’re about to pop out too. This guy is bad for my face.

My beloved neurologist Dr. S. in Pasadena has the reports, so again I call his office and ask to have them resent, which is handled quickly, professionally, and quietly. I confirm Dr. S. in Tucson has received them. So now I wait.

Yabba dabba do!

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!