Jinx!

I’m back! I had my treatment in late July and have been hesitant to post anything for fear of jinxing the (so far) amazing results. I did post something on Facebook a few weeks back and sure enough, later that night I couldn’t walk. But let’s start at the beginning.

In June, I went with my siblings and sister-in-law up to Mt Shasta to scatter Mom and Dads ashes. It was poignant, and heart breaking and liberating all at the same time. As I’ve written here before, my expectation of the whole “circle of life” thing was completely shattered when I fell to my knees and wailed from a very deep place I didn’t even know existed within that I missed my Mom! Fortunately, my brother and sister were there and my sister kept me from completely melting apart.

While out of town I got a call from my neurologist informing me that my treatment was being moved out two weeks. Damn! I had myself totally psyched up for it, but as it turned out it was for the best. When I came home from my trip, my beloved, pain in the ass, long time companion Clark wasn’t feeling so great. Fast forward a week and I was saying goodbye to my old pal. I miss him tremendously, but he did me a solid by checking out when he did. That cat was in. And out. And in. And out. And in…you get the idea. During my infusion week it would have been a bit much I think.

So I’d lost my mother. I’d lost my cat. It was time to lose my immune system. I’m sure I’ve made it quite clear that my family ROCKS. No surprise then, that my sister came straight down to go through the procedure with me (and my nephew popped in from NY for a night to offer some support). She and I secured candy (to counteract the steroid taste), cell phone chargers, snacks (duh, it’s my family), blankets, and water bottles and headed downtown to the hospital.

Everything I’d read said to plan 6-8 hours per day for the five days of the infusion. Yikes ~ that’s a long day. Ha! The protocol at the hospital infusion center required 10 hours ~ each day. The nurses were fantastic and had been infusing Lemtrada for over a year, so they had it down. I partly attribute my comfortable response to this drug to their expertise in administering it and the tweaks they’ve figured out to make it as uneventful and successful as possible.

My sister stayed for a week, followed by my brother for a week, followed by my daughter for a week (not to mention cards, visits, shopping, food, flowers, phone calls and texts from many incredible friends).  My gang did laundry, chores, cleaned house, shopped, cooked…I basically had staff. It was fantastic.  I am so fortunate that I felt great, almost right out of the gate. My head felt clear for the first time in years (possibly due to not drinking wine for a change as one friend pointed out, but anyway…).

So on the Facebook posting night, my daughter Liza was here from Colorado, and her boyfriend was here too. We went over to Anna & Chris’s house for dinner and holy shit….my legs just stopped working.Completely. I wasn’t unduly alarmed; one is warned of all kinds of crazy stuff that can happen post infusion, but it wasn’t fun. Fortunately, with two paramedics on hand, I knew I was going to be safe. Liza had the wherewithal to put in a call to the on-call doctor who told her I needed electrolytes (it’s critical to stay hydrated, but all that water had had flushed everything out of my system apparently). I had a Gatorade, and within 20 minutes was back on my feet. Yay!

Since then, I’ve been feeling marvelous, albeit pretty low energy. The goal with Lemtrada is to stop progression, and any improvement beyond that is gravy. I visited my doctor last week and was told I’m right on track, which is super encouraging. I now continue to get labs done monthly for the next four years (monitoring against all kinds of dire and weird stuff) and then I’ll get an MRI in one year to see if progression as been halted, then do this all over again for a for three day second course of treatment.

I’m not allowed to expect anything beyond containment of this disease, although many people have regained various degrees of ability. Obviously I’m tempting fate by writing this blog post and possibly jinxing myself again, so I’m going to say this very quietly: last week I walked across a room, unaided, carrying a glass of water! ;-).

Ssshhhh…..

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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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Hakuna Lemtrada!

Multiple Sclerosis is for the birds. No big news, that. What is big news are the many treatments that good ol’ Western medicine has been cooking up in the past decades since I was first diagnosed.

I’ve tried several of them ~ Copaxone, Tecfidera, Gilenya ~ and with the exception of Copaxone, I haven’t been too impressed. So it is with skeptical delight that I’ve decided to give another one a try. It’s called Lemtrada. This one basically annihilates the immune system then let’s your body regenerate it without the “memory” of MS. Sweet!

Downsides? Minor. Risk of cancer, thyroid problems, thrush, vomiting, rashes, death. You know, just about anything awful. But what the hell, death is the outcome regardless for us all, and despite that it seems extreme and in another decade it will probably seem as obsolete as using leeches to clean wounds, I’m giving it a go.

I know, I’m being glib (also no big news). Quite honestly I’m terrified. How can I not be? I’ve always thought going under the knife for any kind of elective procedure was risky, vain, unnecessary and actually stupid. Instead, I’m opting to voluntarily obliterate my immune system. Genious!

As expected, my incredibly wonderful and supportive family are lining up to take turns caring for me. My sister is coming from Seattle for the week of infusions (6-8 hours per day for 5 days), my brother is coming down from Northern California to take his stint and cook for me and keep me amused, then Liza comes from Colorado for a week to keep me company and shore me up. And of course, Anna is here the whole time being my rock.

As fucking freaked out as I truly am, when Liza was leaving from her visit last week I told her next time I see her, I won’t have MS! I don’t think that’s exactly true, but it certainly is a fantastic motivator!

I’m nervous and excited and expecting quite the journey. If this can stop MS in it’s tracks (and quite possibly allow my body to regain some ability back), I’m a thrilled and happy camper. Count on my brother to coin the phrase “Hakuna Lemtrada” which I”m hoping proves true…”it means no worries for the rest of your days…”!

 

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Walk This Way

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I visited my surrogate granddaughter in Arizona a few years back, when she was just learning to walk. She was so cute and so excited to be staggering from one solid point to grasp on to another solid point while everyone cheered her on. I was right there laughing and clapping along until I got up to use the restroom and realized I walked exactly like her. From the couch I grabbed the bookcase, then the wall, then the door frame. If there had been no solid surface, I would have thumped onto my ass just like her.

Lucky for her, she’s now as agile as a monkey. She leaps over chairs, climbs over couches, and skips and hops and somersaults her way through the house and her life.

Me on the other hand… I’m leaving handprints on all the door frames and walls of my house as my walking gets more jerky by the day. I’m leaving a trail of juice box drips on every available surface (except my sippy cup holds wine : – ) .

I’m not gonna lie (I love that expression ~ the converse being “I’m gonna lie”), I’m pretty sick of not being able to walk. The level of frustration is intense on the forefront, yet with a subtle and ever present “hallelujah, I least I can sorta of walk!” backdrop.

That’s a funny thing about MS (and I imagine all progressive conditions). Adapting and dealing with any kind of issues forces you to stare down the barrel of the obvious: it could be (and most likely will be) much worse. So you end up thankful that you can limp, hobble, stagger, mobilize in any goofy, not pretty fashion. Check me out! I didn’t face plant! I only knocked that plant to the floor when I crashed into the table and bruised my thigh. Win!

I end up feeling ungrateful and entitled when bemoaning the good ol’ days of hiking, dancing, standing, walking. Geez, what a spoiled brat! Oooohhh….you want your ability back? Don’t you realize other people have it worse? Reminds me of being told to eat your spinach ~ there’s children starving Africa.

This dilemma is one of those that never crossed my mind when I was more able. Why would it? I believe it is reserved for the chronically challenged (albeit available to all, given pause) and ultimately hard to come to terms with. Be that as it may, I’m mad/happy/pissed/joyous/resolved/terrified that I can move from room to room with my walker. You know, learn to walk before you crawl.

 

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Seriously. 2 Cookies?

Like the majority of people, middle age has definitely settled a few lbs around the old middle section. In addition to the age thing, I just can’t exercise like I used to (what I wouldn’t give now to be able to participate in my least favorite activity: jogging). A few stark selfies in the mirror was more than enough motivation to decide it was time to drop a few pieces of stored wine and chocolate, and since diet is also huge in managing MS, I put together a plan.

It’s no secret I have the most amazing two daughters and I am endlessly proud of them. Sometimes mistaken for twins, they could not have chosen more divergent careers.

While Elizabeth, as a licensed paramedic, runs around with lights and sirens leading her way (literally and figuratively), Anna chooses to make jewelry and run a business. They are both incredible, and very inspiring to me.

Because on any given day Elizabeth can be found helping skate boarders with broken collar bones, monitoring old ladies with irregular heartbeats, DELIVERING A BABY, or in some cases, just calling it (once it was a guy who met his maker while wearing a cock ring and ‘looking over’ a Farrah Fawcett Playboy spread); she is our go to person when we stub a toe, get a bug bite or give birth to an eye hematoma with a name (Ito). I don’t use the word awesome unless something is truly awe inspiring ~ Liza is awesome.

Anna is equally dazzling. Though she squirms at the sight of the tiniest spider (while her sister can pick up a severed limb), she is no wimp. This girl has gone through a harsh and unexpected divorce and during that time still managed to create, maintain and grow 5 businesses. She creates two of her own lines of jewelry, has a small floral design boutique, owns and runs a gift shop Boulevard 34 (shameless plug here, it’s my blog after all ~ please like it on Facebook! www.facebook.com/blvd34), and has now started coaching a fitness group.

In the spirit of support, wanting to thin down a bit, and the fact that Anna and I are together all the time (and love to eat), I chose to adopt her coaching meal plan. It couldn’t be simpler. It’s all about portion control. Lean protein 3 time per day, veges 4 times per day, fruit, fats, carbs a limited number per day. You get it. And here’s the kicker: since experiencing vertigo starting in early July, I haven’t been drinking wine.

Now those of you who know me (my Tubac friends are no doubt getting up off the floor after being knocked down by this revelation), I love my wine. Over the years I’ve drifted away from beer, martinis, margaritas, and so on, but man I love a glass of wine to wind down at the end of the day.

One would think that by giving up wine alone I’d be shedding weight like a Malamute in summer sheds fur. I’ve (mostly) given up chocolate, wine, popcorn and all crackers and cheese. It’s just all heathy and organic protein and fruits and veges. So I was pretty happy to find out I’d lost 2 pounds in 17 days. Yay! Ok, in actuality I was expecting to “lose up to 10 lbs in 3 weeks!”, but hey, 2 is safe and certain and better than nothing.

But alas. Next door to the store is the most amazing bakery called Berolina’s. It’s run by my friends Youna and Anders (a Belgian and a Swede), and I found that they make peanut butter smash cookies just like my mom used to make from Aunt Iris’ recipe.They are delicious.

In celebration of losing 2 pounds I decided to have 2 cookies (yes, I re-read that sentence and realized how totally ass backwards that is). What’s the big deal? 2 pounds, that’s the big deal. They’re both back. I’m hoping another gallon of water and some lettuce will kick them back out; that it’s just fake weight caused by bloating, heat, an alien force field…something.

I plan on staying with the eating plan. I feel energized, my skin is good, I rarely miss sugar. But I gotta tell ya, once this vertigo thing is behind me, I’m having a glass of wine. To hell with the cookies!

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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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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.

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.