It’s All Right: Quasimodo, Crowns, Ito and Whirlygigs

I’m not gonna lie. This has been one hell of a year. My switch to a new MS med last year has not really panned out as I’d hoped, and the right side of my head has taken a beating like you can’t believe.

It started when I woke up one morning knowing something was just off with my face. I managed to get in to see my doc and he assured me everything was ok despite the weird feeling I was having. Maybe, though, I should get a shingles shot. We decided that was a good plan.

Fast forward 12 hours and I’m in the ER with the right side of my face on fire, my eye swelling shut, looking like Quasimodo, and having a bad case of…shingles.

Son of a gun does it hurt! I look like a leper. I am really an eye sore to behold, an eye sore in reality, and just flat out miserable.

Once I can go out in public again, I head to my dentist. A mouthful of ancient fillings, in my late 50’s, they gotta go. ‘We’ll just pop in a few overlays’, he speculates on that right side, top and bottom. Nope. Four crowns, 1 root canal, the cost of an overnight suite at Grand Peninsula Hotel in Hong Kong and MY MOUTH IS KILLING ME.

So I spend some time laying low, snacking on Ibuprofen and binge watching Game of Thrones with Anna. On this one night in April, I discovered I have this neat trick I do when I stand up ~ I sort of pivot and twirl. You know by now I have MS, right? So of course I lose my balance and crack the right side of my head on the hearth.

This gives me a shiner that was so big I named it: Ito. For weeks I color coordinated my wardrobe to match the bruise and wore eyeshadow on the left eye to tone the look down.

By June, thankfully everything has calmed down except for my jaw from the crowns. Then last week as I was laying on the floor doing some stretching, I turned over (on to my…wait for it…right side) and BAM suddenly I am hurtling through space as a human whirlygig ~ aaaggghhhh Mr.Wizard! Make it STOP!

Son of a bitch, now I have vertigo. A wise friend suggested the chiropractor who was ever so helpful. And while he was doing his thing, he says “wow! is your jaw ever out of alignment on the right side!”

As of today, I am able to turn over, bite down, and see out of my eyes all with minimal scarring. Two things though: 1) listen to my mother who warned me time and again and go get a shingles shot and 2) if next time you see me I’m wearing a safety mask, you’ll know why. My left side is nervous.

 

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Why Not Me?

Anybody who follows this blog knows that I do my best to stay positive. I have an amazing life ~ great family, supportive friends, financial security, a lovely home…and the motto I stay true to is “why not me?

I’ll explain. It’s no secret that I find wallowing in self pity unacceptable. Shit happens to all of us (it’s called the gift of life!) which is where my stance on “why me?” comes from. “Why not me?” I say. Would you wish your cancer diagnosis on your best friend? Of course not. Would you be happier if your sister had MS? Of course not. Buck up and own it, I say.

We all are familiar with waking in the night and worrying about the pipes bursting, the kids falling into a ravine, the Visa police showing up at work to shame you for your credit limit excess, your dentist calling you out for only flossing every other day. Of course these things don’t happen. But if they did, you might be thinking, “why me?”. Well duh. Floss your teeth, check your pipes, pay your Visa bill, teach your kids the dangers of ravines. We all must take responsibility for our own actions.

But when the universe throws you something out of your control (i.e. MS) it’s easy to fall into a state of self pity. I get it! And I am totally accepting that for whatever reason, I pulled an MS lottery card. It stinks, but as trite as it sounds, it is what it is.

Ok, so obviously I’m a super evolved, rational and gentle saint. Tonight however, I am fucking mad at MS. I want my “old” life back. I want to get out of the car and run inside for a second. I want to walk around the block. I want to bend down and pick something up without falling over. Hell, I want to just walk to the kitchen without holding on to anything. I want to not be hot, tired, dizzy, addled. I want to not have everything be such a big deal. It’s exhausting on top of being exhausting.

I find though that as much as I rail against it, curse at it, try to stomp my feet (no can do without falling over) at it, scream and cry at it, it remains the same. Yes I’m mad, and yes I’m frustrated…but would I wish on you? Not in a million years. You have your own burdens to bear. This one is all mine.

 

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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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So Far, So…Good……zzzzzzzzz

After 13 -1/2 years, close to 5,000 injections and nearly $700,000 I have finally moved off of my trusty “bruise juice” Copaxone and moved on to a new pill for treatment of MS. Hooray! This is big news by anyone’s standards (especially for the diabetics in my life) but I have been suffering big time from what is called “needle fatigue”. This is a condition according to MSers whereby the daily injection of….oh for Pete’s sake, it’s when you are bloody sick and tired of shooting up, plain and simple. The initial plan is to rotate and keep track on this nifty little body part chart the drug company gives you: Monday left arm, Tuesday right arm, Wednesday left leg, and so on. This results in a series of nasty little dents in your biceps, thighs, hips and belly. In my case, I don’t carry enough meat on my arm or leg parts, so I resorted to injecting in my rather ample belly and hips only for the last 5 years or so. The Copaxone made sure to increase the dented, blobby mass of those areas for me as well. Yay!

But – pshaw! That’s all behind me now. This new drug, called Tecfidera, is made out of dry cleaning fluid or some such disagreeable thing and like all MS drugs they have zero idea how it works. I swear I was a Guinea pig in a former life because I get these RX’s and go, OK! let’s pop some formaldehyde! Does it contain resin, plastic and particle board bits? Bring it on!

Not surprisingly, there is a long list of not so pretty side effects that goes along with the prescription. The main ones are flushing, itching, projectile body fluids of all types, weight gain, hair loss and so on. Not one to go marching into this new pill popping venture unprepared (I was a girl scout leader after all), I loaded up on baby aspirin (for flushing), Benedryl (for itching), Gas-X and probiotics (for the intestinal distress). Good to go.

I took my first pill and waited at home. Nothing…nothing…nothing….uh oh! My skin is starting to get prickly. No worries ~ I’ve eaten, taken an aspirin and now take a Benedryl to nip this in the bud. And it works! After about an hour, I head over to the store to exalt over my success with my first pill to Anna. I am happy, she is happy ~ we’ve read some horror stories and this is turning out to be a cake walk.

About an hour or so later, I start to feel really droopy.  I can’t keep my head up or my eye lids open and so excuse myself to go home and take a 3 hour nap. Anna suggests that if I can avoid the other nasty effects and the pill only makes me tired, that’s not such a bad thing. I agree, but am thinking I can’t go through the day feeling this fucking tired all the time ~ I’ll become bed ridden! Forget the needle fatigue, this is just plain old fatigue.

After a little bit of research and some advice from  a few seasoned veterans, I realize much to my chagrin, that the Tec doesn’t cause fatigue, but boy Benydryl sure does. Doh! of course.

So now I’m on my second week, taking the full strength dose and thinking I’m feeling pretty good. This is a cinch! It seems I have a cast iron constitution and no little systemic methanol is going to slow me down. I woke up this morning perky, raring to go, and planned my day. First some yoga, then some errands, then a nice dinner, then my drum class.

It started in yoga. We were working on balance, always a particular challenge for me. This time though, I found that in addition to falling over I had big tears running down my face. Huge crocodile tears. Non-stop emotional release tears. Not being much of the crying sort, I brushed them aside and soldiered through class (kind of weeping the whole time) and then came home and just sat down. For about four hours. The errands went out the window and I canceled my drum class. I had to hit the store though for some groceries so I ran into Trader Joe’s. The nice clerk asked me how I was doing in a standard chit chatty sort of way as I was paying and I started to cry. Wow, really!? Choked up over bananas and quinoa?

Despite the fact that I’m bloated, sobbing and half asleep most of the time, I’m hopeful that this truly is my panacea for MS. Considering I can’t face another needle, it damn well better be!

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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…

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God’s Gift

About 6 months ago, I took the plunge and opted out of taking Valium for muscle spasms and spasticity. Instead, I drove down to some cheesy strip mall in Tujunga and met with Dr. G to get a medical marijuana recommendation. Dr G. had an office with a metal desk, a banquet table style chair and a poster outlining various types of weed on his wall. No fancy mahogany bookshelves filled with medical tomes or plush persian carpets here. This had more of a school cafeteria vibe. I expected a bag of cheetos, a jello cup and a carton of milk, but no. This was all business. I think.

I had brought reams of medical records, SSDI approval stuff and lists of prescriptions. As it turned out, I could have saved the effort of gathering these documents up and hauling them upstairs. It went something like this:

Me:”I have MS.”
Dr. G: “ok, ever used weed before?”
Me: “Not since the 8th grade.”
Dr. G: “It’s a lot stronger than it used to be. Be careful.”
Me: “Got it.”
Dr. G: “Here’s your card.”

Conveniently enough, a few doors and many strong odors down the corridor was a dispensary. I held my breathe, registered and was buzzed through two security doors into what was probably once meant to be an insurance office. An old beat up leather couch, two display counters, some apothecary jars and the apparently requisite “types of weed” poster adorning the wall completed the decor. In the display counter were 10 or so pathetic looking gummy squares and a few chocolate bars.

I explained my situation to a scruffy and bearded young man in a t-shirt:

Me:”I have MS.”
Dispensary Guy: “ok, ever used weed before?”
Me: “Not since the 8th grade.”
Dispensary Guy: “It’s a lot stronger than it used to be. Be careful.”
Me: “Got it.”
Dispensary Guy: “Here, try this.”

I further explained that I wanted the effect on my body, but not my head. To his credit, he gave me a list of things I might want to try, with exotic names such as Bubba Kush, Golden Goat, Strawberry Diesel and Grape Ape . He said they only carried weed for people who wanted to get really high, but gave me a referral to a place in West LA that looked like a Tiffany’s showroom in the picture online.

I ended up with a mint chocolate candy bar and some gummy squares. Each item was marked “intensely potent” and consisted of marked doses. Suffice it to say, things HAVE changed since the 8th grade when pot was like lawn clippings. I took the 6 dose candy bar and used each square for about 16 doses. I nibble just the tiniest amount only a few nights a week as needed. Cheaper and healthier than Valium, I’ve been good to go and happy with the results.

When I found that I was on my last little chunk I decided to go get another chocolate bar to tide me over through the next 6 months. Not wanting to brave the freeways, I thought I’d skip the West LA Tiffany-esque store, and just go back to my little dispensary in Tujunga. Shop local and all that.

First thing I did: Over shoot the driveway. Second thing: Smash BANG into the curb trying to correct. Third thing: Notice that hub cap on the sidewalk looked painfully familiar. Fourth thing: Cuss like a sailor when I see the front wheel of my car.

Since I’m there already, I go upstairs, grab a chocolate bar, pocket the free “nugget” of God’s Gift and a pipe that “Dr. Meg” gives me to try and high tail back to my poor car. I attempt to drive back home but the car wheel goes entirely flat. When the AAA kid asks me what happened and where I’m coming from, I tell him. He gets kind of wide eyed and say’s “Wow lady, I’ve never had a customer tell me they were coming from the weed store before!” Go ahead and insert the word “old” in front of lady ~ that’s what he was doing.

To be honest, the whole episode left me a little frazzled. I came home and thought about dinner. Always a soothing activity. A lovely piece of wild caught salmon was in the fridge, and I found a good marinade to try. First order of business, zest a lemon! I couldn’t find my zester, so grabbed a super sharp vegetable peeler to get some slim slices off the lemon.

I’m not going to spell it out for you. Lemon. Vege peeler. Remember to peel AWAY from your  knuckle…..

It’s now almost 6:00 p.m. and it’s proven to be a long day. I have a big ‘ol bandage wrapped around my thumb, the salmon is marinating, I managed to cut up the veges with all fingers intact and I just poured a much needed and deserved glass of wine. God’s gift, indeed.

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Oh, Anita. Why Me?

I’ve always been a person that seems to invite confidences from people I barely know or don’t know at all. I started a new job once and on the first day this guy came up to me and told me he was a heroin addict, but no one knew, not even his wife. Um, hello. What was your name again? Welcome aboard!

While Mom was recuperating from her broken hip, she had a gaggle of service providers scheduled to come by for a variety of reasons. A social worker came by to make certain we weren’t keeping her in a meth den; an occupational therapist came by to teach her how to shower, stand, bend and clothe herself appropriately and without harm; a physical therapist came by to teach her exercises to get her strong again; and a nurse came by to check on and tend her incisions from the surgery.

It was an ongoing stream pretty much daily and they were all very nice, professional and had more or less the same name. None of them stood out particularly except Anita, one of the nurses.

Like the others, she was timely and extremely capable with one exception. While they were all generally pleasant and only sort of chatty, Anita came in one day and opened up on me like a can of worms. She explained that she was sorry she was late and cranky, but she had had bacon for breakfast and due to her IBS she had had an accident on the way over and had to turn around and go home and change her pants. The problem was, all her pants were in the laundry due to the IBS except for the ugly gray pair she was wearing. She told me she knows better than to have bacon especiallaywhensheisgoingoutonnursecallsbecause…thesethingshappenanad…itthrowsoffherschedculeandshefeelsbadand….Anita! It’s okay!

I felt so bad for her and I think she felt better after she told me her tale. I gave her a hug and a Happy Holidays and left town a few days later. I think I may have missed my calling as a priest. Oh, yeah. Probably not.

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.