Thanks For The Memories

I find it hard to believe, that even though I’m pushing 57, the memory banks are completely full yet. This leads me to think that the lapses that I’m now discovering daily might actually be linked to the MS. Rather than there being no more room,  I visualize my foggy brain unable to keep thoughts contained and the mesh of my cranium like a sieve, letting things seep out as deemed unnecessary.

Question to self: just what is the criteria to remaining “necessary”? Are there parameters for keeping one memory and letting another one ooze out? Case in point ~ I woke up from a dead sleep the other morning singing Peace Train by Cat Stevens, yet could not remember reading a super fun story with Elizabeth the week before. I mean Cat Stevens (now Yusuf Islam) recorded that song in 1971 and I’m pretty sure it’s been close to that long ago since I heard it. And Peace Train? Give me a break. Moonshadow probably would have made more sense. No, wait, it would not have. Brain ~ can we just let Cat Stevens go altogether, please?

It’s alarming to try to put my finger on a word or phrase to use in a sentence and have it just edging about the periphery. Sure, this happens to me too!, you’re thinking. But I don’t mean things like I read a “laudatory blurb about laudanum”. I”m talking about words like “required”, and “graham crackers”. Everyday, simple things.

The girl’s paternal grandmother suffered short term memory loss as she grew older. As she lived some distance away, they only saw her every few months. These short visits were always packed for her though, since every time the girls would leave the room and come back in she’d be super excited to see them again, like they’d been gone for ages. Elizabeth of course took full advantage of this, thereby deeming herself a genius in her Grandma’s eyes by correctly guessing that the Giants were probably going to smack one outta the park in the 9th for the win. Again.

Like most things related to MS, I find myself somewhat addled and vaguely amused by what is going on with my body and mind.  I feel this kind of memory loss may come in handy for me when reading favorite books or watching favorite movies. If only I could remember what they were…

imgres

Hey, Hey, You Sexy Thing

Some weeks back my Mom feel down and banged up her knee. She went to the doctor to treat her knee for oh, about 6 weeks, before finally discovering that she in fact had a broken hip! If anyone ever doubted the fortitude of Scottish women before, my mother is proof positive of their grit and stoicism. She hobbled around on that thing for a month and a half and only grumbled a little now and again before finding out she needed an entire new hip.

So, after spending one fabulous month with my sis in Seattle, I came home to LA for one day, turned right around and came up to Lakeport, CA to help tend to Mom while she was off her feet.

As it turned out, my first order of business was to throw my back out and render myself virtually useless to my sister, brother, sister-in-law and nephew who are holding down full time jobs as well as caring for now, two of us.  Being able to drive, I was able to help my sister get Mom to various appointments. Lisa however, broke her foot a few weeks back so basically we looked like this: Mom, broken hip and recovering from surgery; Lisa, broken foot and damaged shoulder socket (soon to be replaced); me, blown out back and MS. My chiropractor said we should have our own fife and drum corp as we looked like we’re returning from battle.

One of the bonuses to being in Lakeport is that my sister-in-law and brother are very well known in this small town as they are both deeply involved in the education system here, and have been for years. You drop the  name Hagberg (my maiden name) and it’s like being a Kardashian here in LA. Just about everyone has had my brother as an English teacher at one time or another in the last 18 years, so nurses, pharmacists, waiters, grocers, yoga teachers, mechanics….you name it, they roll out the red carpet once you drop the H name. Lisa and I threw it around like we were angling to get backstage to a hot concert. And it worked. It’s a nice little town and we were royalty.

We also spent quite a bit of time at the hospital where I would go visit my mom or take her for follow up appointments once she was sent home. For these stints I would use my walker if I was flying solo without my sister, and let me tell you, I was feeling like pretty hot stuff. In Los Angeles, people generally look at me with a twinge of pity when they see me with a walker. Not so Lakeport. Perhaps it was the aura of the Hagberg persona that was wafting around me, or maybe I just need to spend more time around hospitals and convalescent homes. I have NEVER been hit on before when using a walking aid, but on an almost daily basis I got a wink, a nod, or a “hellloooo there!” It was a great ego boost.

Thankfully Mom is back living at her home after a record 30 day recovery period, all the siblings and families have returned to a fairly normal routine, and I’m back to being a regular, middle-aged, hirpling, non-celebrity in Los Angeles.

 

 

Aimless Confetti

It’s odd being unemployed. As I mentioned in my last post, I’ve been working forever and loving most of it. Now my days are mainly my own and I feel pretty aimless most of the time. No alarm clocks. No scheduled trips. No trade shows. No conference calls. No proposals due. No employee reviews, expense reports or client dinners.

Despite having nothing to do, I seem to be constantly busy. There’re friends to keep in touch with, doctors appointments, volunteering, keeping the cats amused, books to read, wedding stuff, bills to pay, naps to take, errands to run…the list goes on. Good lord, how did I ever keep all this shit straight with a full time job?!

And there’s time to ruminate. I’ve obviously been thinking a lot about my past, and the open ended book which is my future. I’ve done so much already and learned so many things…and my take away is that I have so much more to do and learn. I’m relishing the fun times, the mistakes made, the chances taken and the consequences of it all. I just turned 55 last week, and I feel that rather than I’m turning a page or starting a new chapter, I’m starting a whole new book.

I like to think that I have a blank canvas, but that’s naive. All the things that make me who I am are the basis of the book – the spine, the type of paper, even the font are already ingrained as I begin. The groundwork of my life is fantastic. Friends, family, experiences ~ what a way to start! I herald it all and throw confetti in celebration and accolades to a life so far well lived.

So armed with love, support and humor, I head into the next phase of being me. Aimless maybe, but with a continuing sense of wonder, and confetti in hand.

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.

Cute Orthopedic Shoes

 

Now there’s a misnomer, right? Orthopedic shoes bring to mind (rightfully so) those beige lace up, rubber soled jobs that always look like they’re 2 sizes too small. Purple, veiny, pudgy, water logged skin seeping over the edges…ew. We’ve all seen them a million times and lets be frank. They’re awful at best, and creepy at worst. So, what is one to do when one still aspires to being somewhat hip, somewhat fashionable, absolutely not creepy, and needing orthopedic shoes?

First and foremost, forget your budget. Cute, budget orthopedic shoes do not exist. Period.    All women love to share how cheap they got their new shoes. “I love your shoes! They’re so darling!” “Thanks! I got them on sale for next to nothing at x!”. I guarantee two things you will never hear in the orthopedic shoe world: darling and on sale.

I did a bunch of online research and hauled my darling good sport daughter Elizabeth down to the shop. Holy cow. Seeing as how 1) heels are out 2) backless are out 3) open sides are out, we were left with, well, pretty much beige lace ups with rubber souls. Thankful for small favors, my feet are neither purple, veiny, nor fat. A good place to start one would think.

The eternally pitiful nylon socklet didn’t help. OMG. Who ever thought those were a good idea? I imagine in the 40s they came in handy, but I haven’t worn a nylon stocking in 15 years. And when I did last wear nylons, trust me, I wasn’t wearing orthopedic shoes.

So I’m in a skimpy, sheer, nylon bootie thing trying on shoes. In about 5 seconds my toes are bleeding out the ends, they’re run up and down all sides. I feel like a punk rock orthopedic shoe model (all you young punkers? Your day will come…) and Liza and I are of course laughing so hard we’re causing a spectacle (we seem to do that a lot..).

The one pair Liza tells me I look like I Dream of Jeannie. Another pair is just NO. Of the following 10 pairs, none of them are beige, none of them make my feet swell or seep…pour…ooze…but they are none the less: orthopedic.

Basically I’m screwed. I find a “cute” pair of mary jane type things and a pair of sandals (everything velcro, btw) for a whopping $279. Considering I spend abut zero on clothing, I swallow this price with the accepted knowledge that no outfit is ever going to look too fabulous if I fall on the floor. I finally, finally, finally have come to terms with the fact that my feet have to come first…shoes are no longer an accessory, they are now my lifeline.

This however, does not even begin to assuage my lust for shoes. Check off another win for MS, and another loss for the stylish CFM* pump.

*Come fuck me

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.

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.

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.