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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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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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

 

Exacerbation Exasperation

Exacerbation: make (a problem, bad situation or negative feeling) worse

Exasperation: irritate intensely; infuriate

MS comes in several forms. The first and kindest is known as Relaxing-Remitting. The National Multiple Sclerosis Society defines it like this:

People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

That one is a walk in the park as far as MS goes. I’ve had MS for over 25 years, and as evidenced by recent Facebook posts, some friends I’ve known for 30 years didn’t even realize there was an issue with my health. So what if I’d stagger around a little bit ~ it’s no secret I like my wine and perhaps they thought I’d had a tipple a little earlier than usual (really, 10 am? It was the music business, but anyway…).

Next comes Primary-Progressive. Apparently I opted to skip over this one completely.

This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. 

Then we start into the big daddy part of the equation. Secondary-Progressive.

Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. 

My beloved neurologist Dr. S wrote a letter for me in support of my disability claim stating that I had moved from relapsing-remitting to secondary progressive. Silly me, I thought maybe he was just being nice and exaggerating my exasperating exacerbations for the benefit of my pending claim. On the inside, I knew better. Dr. S wouldn’t do that (be nice, yes; write an untruth, no).

Finally, there is Progressive-Relapsing. This one starts out bad, stays bad, and gets worse.

In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

I thank my lucky stars daily that I am not further disabled. I still hirple around pretty good and manage on my own for the most part. Except. Except for the monsoons.

Spasticity is a common symptom of MS. Again, the NMSS: The word spasticity refers to involuntary muscle stiffness or spasms (sudden muscle contractions). In laymen’s terms, it means that (in my case) I either walk like Frankenstein, or my knees suddenly give out, or my foot drags and I trip. To give you a better idea, I recently visited my surrogate granddaughter who had just learned to walk 3 weeks earlier, and we walked just about the same. It also causes muscle weakness and it is wreaking hell on my gorgeous gams, I can tell you that.

Major triggers of spasticity are heat and humidity. (Southern Arizona! Good plan, Erika!) One of my favorite things about living here in Tubac are the monsoons. Big, huge, towering white spires of clouds that can bring wind, torrential rain, flash flooding, hail and magnificent thunder and lightening ~ it is a spectacle like no other. These storms are often followed within minutes by bright blue skies and enormous full bodied rainbows. It is magical.

But the humidity is hell. And wouldn’t you know that when I was in California last week, they had an unusual and unexpectedly hot and humid spell that brought…monsoons.  So for 2 weeks now, I have been staying inside, sleeping like 15 hours per day, and unable to walk more than 2 steps unassisted.

I realize my best bet might be a move to Siberia. Cool weather, hunky Slavs, vast lowlands and fluffy dogs. Instead, I’m heading moving back to Southern California this fall and leaving my little desert paradise. Hopefully the monsoons there were an anomaly this year and not an ongoing trend. That would really exasperate me!

29 Days

My friends Karen and Billy came over for dinner last night (fish tacos) and she brought me 2 lovely gifts ~ one, a bowl of fresh cut up melon and two, a book which she put on my coffee table when she came in. As I was in the middle of getting the tacos together, I quickly only noted one thing that she pointed out about the book, which was that she had spilled water on it and so it was kind of “wonky” in appearance.

This was significant to us both, as my lovely friend is probably the only person I know who will lend me a brand new copy of a book before she’s even read it. Honestly, a brand new, unopened book is sacrosanct to just about every avid reader I know ~ except Karen. I try to turn the pages in little laps, not leave it open spine down, not take it to the pool and every other trick known for keeping a book pristine. Invariably and inevitably, the borrowed book ends up with a lipstick smudge, or a coffee dollop or a wine splash or some other tell tale sign that I was engrossed and consequently sloppy. Karen never seems to mind though ~ a trait I find both big hearted and enviable.

So her handing me a book that was so used was notable. It wasn’t until this morning that I actually realized that the book was one she and I had discussed called 29 Gifts. This is a book written by a woman named Cami Walker who is diagnosed with MS and changes her attitude and her life through the simple act of giving (and consequently receiving) 29 gifts in 29 days.

Not only did I love concept right off the bat, but the writing style of her book was like reading my own thoughts. She writes about pity parties. She writes about jumping out of planes without parachutes. She writes about not being willing to seem disabled to her friends. She writes about anger, humiliation, sorrow, frustration. I swear, if she knew the word hirple it would have been in this book.

Her “prescription” from a friend to give 29 gifts changed her in uplifting ways and inspired her to start www.29gifts.org. I have joined up and am starting my 29 day journey today, right now. Karen gave me the gift of this book and the idea of 29 gifts, and I am passing that gift on to you!

As I Hirple Along, Singing a Song: Updates on Cows, Disability, Unemployment and More….

I was just reading some past posts and figured anyone following this blog must be dying for some follow up info, so:

1. 10 cow headbands almost drove Anna mad. She made them, she grumbled, and now we’ve gotten  an order for monkey headbands. I kid you not. The good news is the horseheads sold, as did 8 others in addition to the custom order cow headbands, so now we are both getting ready to retire. Monkey headbands, really? This is the gravy order, no doubt.

2. The follow up to the solu-medrol is a new prescription for a muscle relaxant called Baclofen which apparently is specifically for MS patients who hirple. I just started it and will post as I progress…but I think it might be working already ~ I WALKED .60 MILES TODAY with only a walking stick! This is huge and I am happy!

3. Arizona sent me a letter confirming that I cannot get unemployment as I am disabled. Huh. Ok, so with no Fed decision yet, I am getting exactly ZERO help from any of the entities that I have paid into for 35 years. Something feels very wrong with this system.

4. Believe it or not, I found fresh Dungeness crab at the Tubac Market last night and as it is one of my favorite things in life, I bought one as a treat. Last night was the famous Lopez red sauce with a baguette and sauteed spinach, tonight is a carrot soup with Dungee crab…can’t wait for this! In the process I found this really cool food blog. Here is the recipe: http://butterpluscream.blogspot.com/2010/02/carrot-soup-with-dungeness-crab.html

Can You See Me, Now!?

I really lucked out in the family department. My immediate family is loving, supportive and most importantly, really funny. My brother Dave has a rapier wit, my sister Lisa has a flair for the absurd, and if you look up witty in the dictionary, you might see a picture of my mom Jeannie. Suffice it to say we are all corny, smart, sassy, clever, somewhat droll and more than a little irreverent.

Well, the apple didn’t fall far from the family tree, and my 4 nephews and 2 daughters are all pretty darn funny by their own merits. In particular, my baby Elizabeth is one of those people that can get you to snort liquid out of your nose with one single look. She is down right hilarious and her timing is excellent.

On my two Dr. visits earlier this week, I was enormously pleased to find that Liza had changed her work schedule so she could accompany me. We grabbed a coffee and headed over to USC for an ultrasound of my kidneys and bladder (a precursor to the actual Botox treatment which will be taking place in 3 weeks). We took an LA Times crossword puzzle book to pass the time and had a great time laughing over words we made up and just generally being silly as we usually are.

After a delicious lunch at an outside cafe in Pasadena, we headed over to see to my neurologist Dr. S. Now, I adore Dr. S. I keep going to him despite the fact that he is the absolute worst when it comes to waiting. This time, it took us over 2 hours past my scheduled appointment time before we got in to see him. We had our usual discussion about my hirple, how the solu-medrol worked and so on; I did my tip toe walk up and back and then we moved into the exam room. Liza of course came in with me, that’s the point of her coming along after all.

First thing she does when the door is closed is start nosing around. While I’m getting into a gown, she is picking things up and looking at them. She finds these glasses sitting on the counter and immediately puts them on. I’m cracking up, just a Dr. S. comes in. He begins to do the exam and fortunately for me I can’t see Elizabeth who is behind his back. Wearing the glasses. Taking pictures.

Once the exam is over Dr. S. retreats to his office and tells us to join him once I’m put back together. He has no idea that there is NO WAY I can put myself together after Liza shows me the pictures of her in the glasses. We manage to bumble back to his office where he prescribes me a new medication called Baclofen to aid in my walking.  I was biting the inside of my cheek trying hard not to laugh and missed the instructions on how to take the medication all together.

I gave Dr. S. the URL to this blog. Kind sir, if you are reading this, please forgive our irreverence. Liza remembered the instructions for the meds and we meant you no disrespect. You have to admit though, she looks pretty damn funny in these glasses.

Cruising…

I like to be active as much as possible every day. I  give myself one of two options when I get up each morning ~ work out or do house cleaning. I don’t have the energy to do both. The Sonoran desert here in Southern Arizona is extremely helpful in making sure that my house is covered in endless drifts of dust, insuring that my house is never clean and vacuuming is always a viable option.

For the working out option, there is a small gym that my HOA dues cover membership in and it works fine for me in between days I do Pilates. There are 2 treadmills, a stationary bike, an elliptical trainer and some free weights, yoga balls, etc. Very basic, but it works.

I can do the treadmill if I clutch the handrails and don’t go too fast. I can certainly do free weights on the bench. The elliptical is kind of rickety ~ it makes a lot racket and wobbles a lot. I also got stuck on it once which was kind of humiliating…

I like the elliptical machine because once I get going on it, I feel sort of  weightless and imagine this must be what it feels like to fly. One day I was having a wonderful time soaring through the images of my mind and kind of overdid it in my zealousness. When I finally stopped, the old stems had had more than enough and refused to move. Uh Oh. I’m standing on this wobbly gizmo with frozen legs that I can feel are about to collapse from under me and thinking now what? Fortunately, the majority of rental units here where I live are inhabited by young, studly (generally armed) Border Patrol agents who work out all the time. I flashed a sheepish grin, shrugged my shoulders in the most kittenish fashion I could muster, and held out my hand to one of these hunks of youthful manhood who helped me off. BP agents are very polite as a rule and you’d think by this kid’s demeanor that in addition to tracking drug mules and illegals through the desert all night long, helping gimpy middle aged broads off elliptical trainers is all in a day’s work.

I have since switched to a stationary bike that I can sit on long after I’ve overdone it to cool down. Given 5 or 10 minutes of rest I can usually hirple out to the car and go home to relish the dust drifts that have accumulated while I was at the gym.

Last fall, Lisa and I were up in Northern California visiting the family in Lakeport when we happened across a bright blue shiny adult tricycle at K-Mart. My eyes shone, the trike glittered. My mind began to race…could I…? I got right up on it and fell in love. Once back in Arizona, I Googled and searched and researched and fell more in love. I even found someone here in the Barrio who owned one and let me take it for a spin. Amazing!

One of the major drawbacks of having MS, for me, is that I mentally still think I can just go and go and go. Then I realize I am stuck on the proverbial piece of gym equipment, and can’t get down. I can’t realistically hire my own BP agent to follow me around and gallantly save me from awkward situations and perches. A little voice was telling me that a trike was great, but what would happen when I got too far from home and the gams gave out?

Enter the electric trike. I became like the lady in the Napolean Dynamite movie who sees the ship in the bottle and says in a trancelike voice, “I want that”.

I can see myself, you guys. Maybe in a sun hat, toodling through town (one must toodle on a trike, don’t you think?), giving a howdy neighbor wave as I pedal past friends, filling my basket up with wine! and flowers! and bread! and cheese! and kitty litter (I was getting ahead of myself…let’s be real here) and then getting all hot and stuck and powering up and gliding home.

I close my eyes and envision myself on my new trike daily, and have started a dedicated savings jar for it. My goal is to have one of these babies under my tree next Christmas.