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

 

Ready, Set…..

It appears my SSDI has been approved! Yay! I am so relieved! The letter showed up yesterday, along with a very official findings report (all findings favorable – love that word – favorable).

Thanks to all my friends and family for the mental, emotional and financial support during this long process. I am grateful and humbled every day by the wonderful people in my life.

Oh, and one of the official findings? Even in government speak, it seems I’m long in the tooth. Sigh.

Harrumph

I just got off the phone with an old and dear friend who’s in LA for the Grammys (congrats again, B!) and I realized in speaking with him that I am in very strange place right now. It became clear to me that this SSI thing is really hanging over my head, more than I have given credence to. (Is that even grammatically a sentence? For that matter, is that last sentence even grammatically correct? See? Proof I’m losing my grip).

Several things are very different. There’s a cumulative effect over the past 18 months of 1) not working, 2) not earning boatloads of money, 3)  being this physically hindered (hirpling, fatigue, etc). 4) laying this low. Number 4 is based on numbers 1-3 and not feeling very sociable (What, me? You laugh, but it’s true).

And then of course, there’s a fifth thing, which is effectively being called a liar by the Federal government. That can sure take the wind out of your sails. Makes me wish I’d cheated on my taxes ~ at least just once. The net result is I’m feeling kind of low. Not depressed so much as just kind of bewildered.

This looming melancholia might only be the result of poor sleep and a rain storm. Or I might just give it to myself this time and accept that I’m justified in feeling a bit blue. Chances are good tomorrow I’ll be sunshiny, again with a hint of a lilt in my hirple.

All rise…..

I’m not really even sure how to write this post. Me, tongue tied? Mark the date! I’m sure I’ll warm up as I go along.

What has me stunned into speechlessness? Well…here’s the deal: I’m being investigated by the Fed for SSDI fraud. I’ve never collected a penny. I’ve been diagnosed with MS for over 10 years. I’ve paid into the system for almost 40 years. Incontinence, exhaustion, spasticity, Botox injections, MRIs, daily subcutaneous injections, a walker, a cane, a scooter (yes, I bought one!), this blog….all viewed I guess as one very fancy and complex charade so I can bilk the system and get a whopping 25% of the amount of money I used to regularly earn.

According to the investigative report, someone saw me walking unaided to my car. Yup. There’s more, but that’s the gist of it. Everyone who has any experience with MS at all, knows that on those precious days when one can walk? One walks!

There is more to come, and faithful readers I will update as I can. Understandably, I’m a little freaked about being spied on, stalked, investigated and researched. Perhaps my next stop is Federal prison – at least I’ll have 3 squares, a bed and medical insurance!

 

Round 3

So I got my letter from SSDI in October turning me down again for disability insurance. Next step: find an attorney and schedule a hearing.

The first guy was recommended by a web site dedicated to lawyers that specialize in disability cases. Whoo boy. Armed with a recommendation in hand, Anna and I went to see a guy in Glendale named Mr. W. I googled him prior the appointment, and found out he had been practicing law since BEFORE I was born. I am no spring chicken, so I figured he’d either be super experienced or practically senile.  He was practically senile.

The office looked like an episode of Lawyer Hoarders. One whole office was so crammed with ancient case files and old copy machines that you could barely see in the door. The guy had a handler for pete’s sake! “Mr.W. will see you now”. Ok….he then proceeded to ask me three times when I had quit working; five times what it was I had done for work; and then deny a call from “one of these new fangled cell phones”. Wow.

Needless to say, we moved along pretty quickly from that appointment. The next one was with a guy named Mr. P. He was great. He knew the law inside and out, has been lecturing on it for 30 years and had a great sense of humor (very important to me, obviously). He was positively gleeful with the side effects of my various medications and treatments, and told me he was confident that based on my being a bit “long in the tooth” (no kidding, he said that to me!) and my history of MS treatments and symptoms, a settlement for benefits was likely. Phew.

So now I wait for a hearing date, and assuming all hell doesn’t break loose and the creeks don’t rise, this will all be behind me by the end of 2012.

Get those dogies moving!

Ok, I have been one remiss and crummy blogger. Here it is mid-November and I’m just checking in. In my defense, there has been a lot going on! Starting in Tubac post the lizard debacle…

1. I got the house in Tubac cleaned up, organized and ready to rent with the help of my fabulous sister Lisa who came down from Seattle for a few days. I know I keep saying this, but she IS the best sister ever (Anna and Liza will disagree because they each have a pretty great sister, too). My property management friend Candace managed to get the place rented from Dec – May, so that is a huge load off my mind. It is also listed for sale if anyone is interested in a desert paradise hideaway.

2. Cleo went in for the final nap. Liza swears she’s going to haunt me. If I’d had the money, I would have taken her to the taxidermist and had her stuffed and given her to Liza (it WAS HER CAT!) for Christmas. Anyways, a few days after I moved back to California, I saw the old, nasty, mean ass, feral cat we call Cujo that beats up the neighborhood cats out on the deck. I was surprised it was still around and called Liza with the news. “Oh my gosh! Guess who I just saw out on the deck?” Her response….”Cleo!?”.

3. I had to say goodbye to some of the best friends I’ve ever had in my life. These marvelous friends threw a typical good old fashioned pot luck with delicious food and wine and going away presents, including some much needed gas money (as I’ve said, it’s gotten tough), and a beautiful little day of the dead statuette. My friend Nan gave me a little picture of some darling black cats ~ with some chagrin after I told her about Cleo’s impending demise. Needless to say, this tough old bird cried and cried. I love my Tubac gang!

4. I loaded up Liza’s car (we swapped last time I was in LA) and said goodbye to my 18 months of pure joy in Arizona. Next up! Back in California : – )

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.

 

 

Grown Up Doctor

How refreshing. Yesterday I went to see the doctor assigned to me for the 2nd round of my SS disability claim. Unlike Dr. Flintstone, she actually gave me a quasi neurological exam! She asked what meds I take, what characteristics my symptoms took on and not once, did she ask me if my children were married or why I lived in Tubac. Hooray! I feel like I might actually have a chance this time. At the very least, I feel the information she submits to the powers that be up on the big SS disability judgement thrones might actually reflect what is going on. Fingers crossed!