Is It A Little Warm In Here?

When I was in the audio business I went to a LOT of trade shows. At one company I worked at we had a slew of rep firms that sold our products across the nation into music and pro audio stores. These warriors obviously attended all the same trade shows as me, which were scattered throughout the year all over the country.

Although it might be hard to fathom, I was a pretty irreverent little punk back then (as were all my co-workers ~ but damn we certainly were witty and clever). We had this one guy who had a firm based in Minnesota. No matter where we were, or what time of year, or what time of day, he would always come running into our booth sweating profusely and saying, “Is it a little warm in here?”. Mercy, we made a lot of fun at the expense of that poor guy. Apparently I took the communal comeuppance and was chosen to pay the group sins by getting MS, whose worst enemy is heat.

Back in the day (so I’ve heard), if you you were suspected of having MS, you’d be thrown into a tub of hot water. If all symptoms got worse, then there you’d go. MS. I’m not sure if that’s true or not, but suffice it to say I haven’t had a hot bath in years.

Now add an equation of MS, medications, menopause and living in Southern California and you’ve got one noodly challenge to standing or walking. On top of this, I can’t stand air conditioning. All that fake cold air blowing over my neck, head and body – yuck. Consequently, I tend to be one big Gumbyesque mess come summer. And of course this being Southern California, it always feels like summer.

This new treatment that I’m about to embark on (the goal of which is to stop progression), has offered some other Lemmies (evidently the Lemtrada “in crowd” gang moniker) relief from the heat as time has gone on. This would be a big bonus for me! Geez, I’ve become a gray haired, over weight, over heated grumpy old lady with a walker now. I’m so totally ready to be cool again! : -)

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Through the Looking Glass

I’m trying a new trick. My goal is to not touch anything. Fellow MSers will know what I mean, but for the rest of you firmly planted sorts, it works like this. The game is to stand up from the couch without using your arms, walk through the house without touching the walls, or put your pants on without helping to lift your leg. Sound simple? It’s not!

Today as I was contemplating arising from the toilet without pushing off using the counter (sorry if TMI), I was thinking about things I wanted to do today, and fondly remembered those days of leaping up and just getting crackin’ ~ from the couch, out of the car, out of bed and on with the day!

I’m not going to sugar it up. I miss those days. I mourn my ever changing and challenging inability to just do shit when I want! This thought eventually meandered into a recording studio analogy (no surprise for those who know me) and I realized all that has really happened is that I’ve switched sides of the glass.

For the first 50 years of my life I was in the main tracking room in front of the mic, belting it out for all to hear. Dancing, swaying, singing, performing, entertaining.  Now, I’m on the other side ~ in front of the console and living, finessing and capturing life from the chair. And, as much as I’ve always admired the performers, I know how much magic happens on the other side of the glass in the control room.

This is where the sparkle, the nuance, the punch, the subtlety and the humor is added. It’s the finishing touches on a masterful performance. It’s a caress and a slap. It’s a laugh and a cry. It’s the icing and the cherry. It’s the pièce de résistance.

Now don’t get the idea that I’m giving up on living here or anything. I’m just learning to hone the craft of living from another perspective. The mental change over is helping to ease the sometimes foot stamping, hair pulling, tantrum inducing effects of this goofy MS. Plus this way, I still get to hang out with the band.

 

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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.

 

 

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.

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!

Woody and Hannibal…When Worlds Don’t Collide…

Woke up early. Got ready for the MRI. Alec picked me up and we drove up north and found a coffee shop. Nice hot coffee, one single donut hole to cushion the hastily swallowed Ativan pill, and off to the lab. Fill this out, answer these questions, sign here.

Standing on the defense of a case of first rate denial, I plead absolute negligence in finding out before hand what my portion of the costs would be.  I got the procedure codes from the desk administrator and gave the ‘ol insurance company a call. When all was said and done, my out of pocket expense was going to be upwards of $800. I don’t think so.

This is not a critical procedure to my MS. It was recommended by a doctor who suggested that as my insurance would be running out soon, and I’d had some flare ups last fall, it might be a really good idea to get them done. I begrudgingly agreed with her and hence today’s scheduled appointment. But $780!? Nuh uh. No way. I just can’t afford that!

Nothing motivates me faster than not being able to accomplish something, even something as simple as not getting a dreaded MRI because I can’t afford the co-pay. Watch out world. Once this Atavin wears off ~ as my brother always says~ I’ll be Back, I’ll be Bold and I’ll be Bad!

Woody Woodpecker Meets Hannibal Lecter

I’m feeling very anxious, because tomorrow I go for another dreaded MRI. I think this is probably my 4th or 5th time. The neurologist I met with at the University of Arizona hospital recommended having another one based on the exacerbations I had last fall and before my insurance runs out. I know she’s right, but ugh. I don’t like them.

I am having my brain, thoraxic spine and spine all viewed. Although it is not invasive like a surgical procedure, it is the most intimate encounter with your insides that can be done without using a knife. For those of you who have never experienced this particular procedure it goes like this: you arrive showered and wearing no jewelry or hair product or deodorant, then  gowned and put onto a stretcher type apparatus (a gurney? A bed? A table?). You are then injected with dye. In order to maintain total stillness, your neck is stabilized with a collar type thing and then a Hannibal Lecter type mask is placed on your face and you are fed into a giant, scary tube into a machine.

Sound fun? Now you are told to just breathe deeply and stay calm. Oh sure. What the fuck!? Get me out of here!! Breathe. Breathe. Breathe. Phewww. Ok. Once inside the tube, these mechanical noises from the Alien movie start engaging, and then this knocking sound starts like Woody Woodpecker is circling your head and pecking and looking for the best cranial opening he can find. No wonder I feel like I’m going nuts!

The whole thing takes over 2 hours. That’s right, 2 hours. I take music and headphones, my teddy bear Eustace, and this time 2 valium. I’m not scared of MRIs anymore, but I can’t say I’m looking forward to it. Damn, I hate MS.


Get Off the Couch, We’re Going to Bisbee!

Being the people person that I am, I was delighted several years ago to discover Couch Surfing (www.couchsurfing.org). The basic premise here is that you register with this social media site and detail your hosting availability (be it meet for a cup of coffee or the offer of a few nights on the ‘couch’). There’s only a little bit more to it than that (some safety features for example) but once you’re signed up you can surf for couches to sleep on all over the world.

This is right up my alley. I LOVE meeting new people. Although the stars have yet to align for me to sleep on couches when I am traveling, I have hosted several times, both here and in California. My friend Nick from Manchester, England walked across America (yes, you read that right ~ from Times Square to Santa Monica); Ben came from England via Florida to buy a motorcycle in LA; Megan and Josh came from Michigan to help with the Floating Stone Spa relaunch here in Tubac; and most recently, Gail from Derby, England stopped by for a night and stayed for three.

Generally when visiting a new place you go to a hotel, sight see a bit, go back to the hotel, eat dinner, sleep. Repeat. Ok, maybe not all that mundane, but you get the idea. What makes CS so cool is that you actually get the opportunity to experience a place from the inside. Eat where the locals eat, avoid cheesy tourist traps, meet the natives. In Ben’s case, I put him to work in my garden  and then took him to a spa opening where he drank pink martinis and was fawned over by the ladies ~ he loved it! Can’t get that in a guide book.

So last week my newest surfer Gail showed up. Gail is my age and from England. She is surfing across the US from Florida. She is full of beans and we hit it off like a house on fire. Her plan was to head to San Diego from Tubac, but I convinced her a trip to Bisbee was in order, and she agreed.

We spent a lovely day in that funny little town. We drove around and looked at many of the famous stairs that are featured in the Bisbee 1000 race (http://www.bisbee1000.org); had a hamburger at the Copper Queen Hotel; met an old geezer in a period costume at the visitor’s center who told us about Pancho Villa and his purported German connections; and finally wended our way over to Douglas, AZ, a dot of a town seemingly half frozen in the 1950s.

The following day I took Gail up to Morning Star Ranch where my friends R & A live. They have a magnificent home on 36 acres of pristine Sonoran desert, which the average visitor from Derby, UK doesn’t usually get to see. We had a fantastic lunch and then a ramble through the ranch in a Jeepy type vehicle. I took a tired but happy Gail home where she quickly fell out of favor by kicking my ASS in Scrabble, twice.

Gail moved from Arizona on to Hawaii for a week, then she’s off to San Francisco for a week and then back to England later this month. I’ve forgiven her the Scrabble trouncing and I look forward to seeing my friend either here or there again in the near future.