Leapin’ Lizards

I’m working on getting my house in order so I can put it in the rental pool here while I wait for it to sell. This entails decorating it in a Southwestern style and, being this close to Mexico, I figured I’d get some inexpensive, yet colorful, tin stars, suns, mirrors, etc. to brighten it up.

There are more than a few outdoor pottery and garden art shops here in Tubac. They work on the honor system: you find what you like, look at the price, figure out the tax, and then throw either money or a check in a slot by the door.  One such place called La Paloma has a clearance section outside, and I thought this might be just the ticket for my budget decorating needs.

In amongst a bunch of cracked plates, dented tin pots, hanging kokopelli silhouettes and fairly tacky wall hangings, I saw some mirrors that looked quite promising. I reached across the table, and pulled one out. AAGGHHH! Something jumped out of it! I threw it back down and held my breath. Nothing. Now, as a nearly native Arizonian (2 summers makes it so), I wasn’t about to get all squeamish and girly. I leaned gingerly in to see what it was and if it was gone. AGGGGHHH! The damn think jumped back out of the basket it was hiding in.

I leapt back and took two steps backward ~ but in my new backwards state I couldn’t catch my balance and down I went…. in the process knocking over a basket full of tin lizards (ironic).

So there I was again. Splayed on the ground, covered in tin lizards (better than cat shit!), with 2 men standing over me asking “Senora! Are you ok!?”

Of course my ego was bruised, but other than that I was fine. I didn’t buy a mirror, or a Kokopelli or even a tin lizard, for that matter. I think I might head to Home Goods after all.

Bonus!

My last post was from Gothic Rosie’s blog about the crummy things MS does to us and how it makes us feel. Well that’s all boo hoo and fine, but now let’s focus on a few of the bonuses of having MS.

1. Handicap parking. No need to say more. You know you all covet it.

2. Built-in excuse. The truth is, often times I just don’t feel like getting out of bed or getting dressed or going outside. The other truth is, that sometimes when I don’t want to do something or go somewhere I play the MS card and who’s going to call me on it? The real truth is, no one will ever know but me ; ^ )

3. Have a seat! Now that I am getting more accepting and comfortable using a walker, I find that I always have a place to sit down. No more aimless milling around for me – I am now purposely seated, wherever I am.

4. Jogging.  I’ve never been able to find the allure in jogging. Holy cow, I spent most of my life running to the store, running after the kids, running to catch a plane, running to a meeting….Why would I want to do that for fun? Jogging is now officially off my plate. Hallelujah!

5. Cocktails. Similar to the built-in excuse above, who is ever to know if I’ve had a quick nip or two and am a little tipsy ~ or if I’m just having an unsteady-on-my-feet day? My walker comes with a pouch under the seat…none of your damn business what’s in it.

6. Popsicles. Heat is the enemy, hence unlimited popsicles are your friend.

There are more, and I will add to this list as I think of them. Right now, poor me, I’m off for a popsicle.

 

 

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.

 

29 Days

My friends Karen and Billy came over for dinner last night (fish tacos) and she brought me 2 lovely gifts ~ one, a bowl of fresh cut up melon and two, a book which she put on my coffee table when she came in. As I was in the middle of getting the tacos together, I quickly only noted one thing that she pointed out about the book, which was that she had spilled water on it and so it was kind of “wonky” in appearance.

This was significant to us both, as my lovely friend is probably the only person I know who will lend me a brand new copy of a book before she’s even read it. Honestly, a brand new, unopened book is sacrosanct to just about every avid reader I know ~ except Karen. I try to turn the pages in little laps, not leave it open spine down, not take it to the pool and every other trick known for keeping a book pristine. Invariably and inevitably, the borrowed book ends up with a lipstick smudge, or a coffee dollop or a wine splash or some other tell tale sign that I was engrossed and consequently sloppy. Karen never seems to mind though ~ a trait I find both big hearted and enviable.

So her handing me a book that was so used was notable. It wasn’t until this morning that I actually realized that the book was one she and I had discussed called 29 Gifts. This is a book written by a woman named Cami Walker who is diagnosed with MS and changes her attitude and her life through the simple act of giving (and consequently receiving) 29 gifts in 29 days.

Not only did I love concept right off the bat, but the writing style of her book was like reading my own thoughts. She writes about pity parties. She writes about jumping out of planes without parachutes. She writes about not being willing to seem disabled to her friends. She writes about anger, humiliation, sorrow, frustration. I swear, if she knew the word hirple it would have been in this book.

Her “prescription” from a friend to give 29 gifts changed her in uplifting ways and inspired her to start www.29gifts.org. I have joined up and am starting my 29 day journey today, right now. Karen gave me the gift of this book and the idea of 29 gifts, and I am passing that gift on to you!

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.

Bladder Blog #4

I’m back from 10 days in California. During that time I watched the Super Bowl with Anna (ok, the last 3 minutes anyway); shopped for and cooked a birthday dinner (ok, Liza made the dinner) for my friend Tanya; called on my first grocery chain and talked about banana and tomato programs; went to the produce market with Liza; went to the flower market and put together 15 wedding centerpieces with Anna (ok, she designed them, I just copied); spent the night with my friends Betty and Bob; set up the wedding flowers; consulted on some advertising plans; had my hair cut (thank you, B!); went to a mall (twice!); did 2 store produce department site visits; washed and dried most of my clothes with a lipstick, and drove 8 hours each way there and back. Oh yeah, and had another botox treatment. And I’m wondering why I’m so tired!

I think I may have finally nailed it. I had a prescription for Ativan from my solu-medrol roid rage experience and I asked Dr. G if it would be ok if I took some prior to the treatment. Generally he gives me a little valium and I squirm and gasp and cry and cuss, despite it, and we both agree that we are not BFFs for those 15 minutes. So when I asked him about the bigger daddy Adavan, he said, “oh yes. Please do.” I took 2.

Although it was Anna’s turn to accompany me on this visit, Liza came with me instead. As an EMT, she is a virtual rock when it comes to anything medical procedure related, whereas Anna is more like me, squealing at a pinprick of blood. Bright girl that she is, she brought in an LA Times crossword puzzle book and proceeded to yell out clues which all 4 of us in the room were yelling out answers to. It proved a wonderful distraction. I was also stoned out of my mind.

I only yelled out the answer “F*** you!” (or variations on that theme) about 4 times. Considering the names I’ve shouted at Dr. G during past procedures, we all agreed that was pretty good.

So now I’m back home in Tubac, worn out and sleepy. But I’m wearing a thong.

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?

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.