Friday, December 31, 2010

Thursday, December 30, 2010

Roid Rage

I went for the usual visit to my neurologist in LA over Thanksgiving week: walk on tip toes, walk on tip toes backwards, walk heel to toe, walk heel to toe backwards, close eyes and touch nose, determine soft (a Q-tip) from sharp (a safety pin), jerk around from the little rubber mallet hitting knees and elbows. I always imagine this is what getting a drunk test must be like. It seems to me that a big disease with it's own initials  (MS!) should have a more intricate and serious seeming examination to go along with it. Q-tips, safety pins and rubber mallets seems so amateur we're just playing doctor patient.

So, when Dr. S. suggests I go for a steroid infusion treatment (since I  didn't do so well on the walking parts of the test), I'm happy to play along with the game. 3 hours a day for 5 days getting a slow drip of something called solu-medrol, sure!

The first day was cake. I snuggled into warmed blankets and watched I Love Lucy reruns while eating the proffered snacks from a little basket and drinking fresh hot cappuccino made on site for me by the nurse on duty. This place in Pasadena is a 5 star infusion center!

Day 2, again, not so bad. It being Thanksgiving Day, I was moved to a different part of the clinic without a nurse dedicated solely to my whims, but I was in the glow of actually having been able to stand on one leg without falling over last night. Victory!

Day three. My friend Kate came by and we got to catch up which was great. I regaled her with stories of how I had played Cranium with some friends the night before and was able to actually act out the "break dancing/belly dancing/line dancing" card! Geez, I can't even remember the last time I was break dancing. All was going well.

Day 4, Anna came with me and we ordered in Thai food and played with embroidery thread (totally different story). I started getting pretty tired of being hooked up to this infusion bag and beginning to feel just a little bit grumpy.

Day 5. Enough already. Get this f$%*ing bag outta my arm. No thanks, I don't want any of your stupid snacks. I already had coffee this morning, thanks. I ended up playing Angry Birds for 3 hours and then fled.

I spent the night over at Elizabeth's house, and then got up early for the drive back to Arizona. I had a good book on tape and there wasn't much traffic, so the drive home was uneventful. I got back around 4, had a shower and fell dead asleep around 6. Imagine my surprise when I awoke 14 hours later! I thought steroids caused insomnia!? Well good on me, they had the opposite effect.

Despite the long sleep, I woke up in one very bad mood. Apparently, major doses of steroids like I had just been through causes your body to stop producing them naturally (I know, I're thinking geez, Erika, you didn't look into this before? No, I did not. We were just playing doctor I thought). This predicates the need to give one more artificial steroids in the form of Prednisone.

Prednisone is one nasty drug. I spent an entire week shut inside, unbathed, sneering and plotting ways to maim things ~ my friends, my cats, my car, my couch ~ anything. I just wanted to...well....maim something. I stopped answering the phone. I stopped showering. I stopped going outside. I stopped reading. I finally called Dr. S.'s office and explained that my former sunshiney self had abandoned me and that I had become nothing but an angry maiming plotter. He prescribed Ativan.

Oh boy. Now I was playing in the big leagues. Solu-medrol. Prednisone. Ativan. I don't like taking any medicine beyond red wine. I do the daily injection of Copaxone and I figure that's plenty. I opted to skip the Ativan, finish the weaning off the Prednisone, and go back to red wine.

Now a month later, here I am, still not walking all that steady, but back to my old happy self. I've realized that although MS has been roaming around my proverbial house for over 20 years, this last "treatment" gave it a prominent seat at the head of the table and quite frankly, it pissed me off. I will give  MS it's due and respect that it's here, but also firmly request that it stay off the center stage.

Wednesday, December 29, 2010

Fast forward to Arizona...

I have been remiss. I last posted in November of 2009, and here it is December 2010. I claim life as my excuse ~ I've been through a few changes. In no particular order: I went to Nicaragua with Lisa, I bought a condo and moved to Southern Arizona, I lost my job, I did about 5 weddings with Anna and Little Edens (, I slept and slept and slept, I went zip lining, I applied for disability, I got a real estate license, I got my first (and probably only) steroid infusion, I joined a book club,  and yes, I rented a scooter.

I will post about all these individual and fascinating events, as well as become a more faithful and steadfast blogger as one of my 2011 New Year's resolution. Hang onto your seats! It's good to be back.

LA Flower Mart

Anna and I started a floral design business last year called Little Edens ( My first idea was to do small space garden design business (many thanks to my dear friend Albert who said, oh, small gardens, you mean like a little Eden?) but when Anna came home from a year overseas, she took it in a bit of a different direction. My girl is fascinated with weddings.

Our partnership has been so enjoyable, and one of the best things is that Anna sees things for the most part through the same glasses as me, so our sense of humor is pretty similar (actually, my whole family has pretty much the same humor).

Anna is 26, so she is in the thick of the young marriage crowd. It's like shooting fish in a barrel, there are so many potential brides in her circle. So, we booked our first wedding. It's at a fancy wedding-esque venue up in chi chi Westlake Village, CA. Wonderful!

We were super excited ~ we got our business license, wholesale license, website and business cards. Then we found out we needed "candle insurance". Candle insurance. Right. We got right on that (we did!). So once we were legit and insured, it was time to go to the LA wholesale flower mart and buy our flowers. We had a plan, we had a budget, we had some nerve.

As my friend Chris likes to say about Anna, she is easily distracted (as he says "oh look! Anna sees something shiny!"), and I am just a dingbat to begin with, so you put us two avid gardeners in the middle of one of the most amazing, colorful, vibrant, awe inspiring, stunning locations on the planet at 6:00 a.m. without coffee, and trouble is bound to ensue.

That first time we went to the flower mart, we spent about $75 dollars on 3 bunches of purple statice, 1 dozen pink roses, 1 dozen orange roses, 1 bunch yellow solidaster,  10 red Gerbera daisies, one bunch curly willow, 1 bunch of leather fern, 2 bunches of salal, 1 bunch sunflowers, some Queen Anne's Lace, and.....if you have no idea what I'm talking about, it's like being a kid in a candy store and buying York peppermint patties, orange circus peanuts, cotton candy, malt balls, Butterfingers and wax lips and trying to make them into a cohesive dessert. It's all good, no doubt, but kind of hard to bring together into a pleasing olio.

Fortunately, this was a trial run for us, so we made lots of small and fun arrangements (that required no insurance) and gave them to friends and family. After about a half a dozen weddings and numerous baby/shower/holiday arrangements we are now old pros and can actually walk into the flower mart and leave with exactly what we came for... and a few proverbial shiny and sweet things.

Saturday, November 7, 2009


I've always been a pretty active person, and I still work out at the gym as much as I can. I've worked out with a trainer, taken classes, lifted weights, done Pilates, circuit training, aerobics, Jazzercise (remember that!?), step classes, jogging, hiking, pretty much everything but skiing. Two things I don't do: ski, and clean house, but that's another story.

Prior to my MS diagnosis, I knew that there was some pretty wacky and random stuff going on with my body. The suggestion came from friends that I should try yoga to help put my body back in balance. Sure! Let's do that!

Generally, I am not the kind of person who does much research once I get a bug in my bonnet. I leap faithfully out of the plane and say "oh! Was I supposed to have a parachute? Who knew!" Yoga was no different. I went down to my local Yoga and You, A New Way of Life, or whatever it was called, unrolled my new pink yoga mat and prepared to become balanced.

Balance is a key word here, as those of us with MS know. I can only look at the stars from flat on my back, fall into giggling fits every time I try to walk with my eyes closed, and can walk a straight line and end up across the street. And, as anyone with MS can attest to, heat is not our friend, particularly when it comes to balance.

Now, if I'd done any research at all, I'd have realized that Birkham was not the name of the instructor, or the owner of the yoga studio. Instead, I began to stretch and bend along with about 10 other very stretchy and bendable people. I feel a little bit awkward, but ok. The room is nice and toasty which I find sort of soothing, initially. Then the instructor has us stand on one foot with the other bent up to our knee. This did not go well for me, but I keep trying. The room starts to get even warmer. I must really be working myself out! Even though it doesn't seem that tough, I'm sweating like a pig!

She instructs us to stand on one foot and lean forward with the other leg extended behind. Ok, maybe not so much for me. Then, switch that pose with a little leap. Ha ha! I don't think so! Now downward dog and lift another leg! By now, she's figured out I must be new, so she guides me to the wall and tells me to lean against that - many newbies have a problem with these advanced class poses. Advanced class!? How did I manage to get into an advanced class and why IS IT SO HOT!?

By the time things wind down and we're just standing there with our hands in front us doing a namaste thing, I can't even stand on two feet. I'm sagging against the wall, sweat pouring off of me, unable to walk.  I feel like a noodle that's been sucked out of a soggy bowl of soup. The last thing I feel is balanced.

I slither along the wall towards the door. The instructor sings out to me in her calm, serene, oh-so- invigorated voice "See you next week! It gets easier with practice!" I wouldn't know. Hell will freeze over before I go see Mr. Birkham again, and bad as I might be, I'm not going there. It's too hot.

Friday, November 6, 2009


One of my all time favorite activities is hiking. I love the treasure hunt feel of the trail...the path goes up around the bend, under a tree canopy, over a rise - you never quite know what you're going to stumble upon next (ok, bad metaphor in my case, maybe).

Back when I was younger, the girl's dad, Ken, and I used to go backpacking. I have the most wonderful memories of fly fishing, and setting up the tent in the wind. We once hiked through a bog up at Army Pass in the Sierra. At the time, we were MISERABLE but it remains one of our favorite stories to recount together.

When the girls were in their teens, their senior girl scout troop did a camp out called Tambu up at Tejon Pass. The girl scouts seldom do things that don't have a catchy Indian sounding moniker and some companion songs that sound more like dirges than Kumbaya.

Anyway, girl scouts are also big on competition, and this particular annual camp out was a biggie. The troops got points if ALL the members of each troop backpacked the one mile in to camp. Well, now we're talking my language. Piece of cake.

I hadn't worn a pack in years ~ I'd been raising children!  I took my ancient pack out of the old cabinet in the garage, aired it out, threw away some vintage moleskin, an old band aid, some Top Ramen and some freeze dried tomato beef stew; and grinned like an old tar. I was ready to hit the high seas of hiking again.

This was a short hike, only one mile, down hill, on a well graded road. I had taken on Monarch Pass, what was this? Phhhttt.  The years had taken it's toll on my packing abilities (not a suitcase, that I could teach a class on), but hey, how hard could it be? So I rolled up my hairbrush into a t-shirt, smashed a pair of jeans and a some underwear in, and hooked on a water bottle. Strap on my down bag, and I'm good to go.

We get to the marshaling area and count off. It's kind of cold; there are tired little patches of ice in bleak drifts by the side of the road and some lame puddles. We head off as a group down the hill. I haven't worn my hiking boots since the last time I used my pack, so they're feeling a little stiff. I also did not adjust my pack to my body frame, I mean come on, how much could I have changed over 18 years? I'm still within 10 lbs of my 25 year old self.

By the time we get about 1/4 of a mile into it, I'm not singing the 'ol scout songs with quite as much gusto. By 1/2 a mile I'm starting to mumble and curse my previous vigor under my breath. By the time we hit 3/4 of a mile I'm glowering at the girls, the tress, the mud, my boots, anything that is glower worthy. By the time we hit camp I am flat out grumpy and wondering if anyone brought the fixings for martinis and separately considering why I ever thought this backpacking thing was so damn great.

We set up tents, whip up some hobo packs, sing some songs, clean up, hit the hay. I'm sharing a small tent with another leader. As I zip into my mummy bag I'm contemplating that this thing is rated to -10 degrees. Does down lose warming ability as it sits stuffed into an airless bag for a year? There is no way it's going to be -10...I'll be fine.

I'm trying to warm up and sleep, but man-o-man does my body feel weird. My feet feel like they are attached to my legs at a wrong angle and my hips feel like they are connected at a different cant. My back hurts and I'm COLD. The weather is definitely chilling up here in the mountains.

When I awaken at dawn, I'm buried in a down sleeping bag, wearing two girl scout sweatshirts, two pairs of socks, sweat pants and wrapped in a Hefty garbage bag. A vague memory of clawing through my pack to find anything that will warm me emerges. I start to cry. I feel like such a sorry ass and useless back packer, let alone any kind of example for my girls.

They are still sleeping as I cajole myself with the miserable humor of all this. I wipe my now frozen tears, get a cup of coffee, pack up to go home (no way am I spending the whole weekend here!), donate my Hefty bag to the other leader and swear off camping forever.

In retrospect, there was one component I hadn't factored in because I didn't know it was coming along with me, let alone everywhere I was going from then on. My MS companion was still a secret to me then. I will tell you one thing, that weekend sure hammered home the upside to a 5 star hotel!

Monday, November 2, 2009

You can't be scared of who you are

Ok, so I'm super addicted to the Biggest Loser. And I eat peanut butter sandwiches with cheese on them. I still hold some secrets.

One of the last episodes highlighted a woman named Abby who had lost her husband, daughter and baby son in a car accident.

               What do you even say.

It got me thinking about inspiration. According to the show, Abby has gone on to become a motivational speaker ~ and she certainly has a story to tell about overcoming the greatest of odds. It totally made me cry and applaud the unfathomable strength of humans, and (sorry guys), especially women.

When I was diagnosed with MS back on May 4, 2001, suffice it to say it was not the best day. I came home freaked, my two beautiful girls were scared and confused, and very unlike us, we all started yelling at each other, peeing in our corners, and crying. Anna went home to my ex husband Ken's house, Liza and I squared off, and the night finally ended.

The next morning, as I was planning my pity party in my head (I'd just been diagnosed with MS for god's sake! What does one wear? What does one drink? Gin perhaps might be fitting...) I met Liza in the kitchen as she was getting ready for school. She was 13 years old, and had been diagnosed as a type 1 diabetic for 4 years. I looked at her and asked her, flat out, how she coped everyday with a chronic, degenerative disease that was not going to get better (at best) and make her further disabled and kill her (at worst). I'd been diagnosed for 6 hours ~ drama came easy.

I asked her, "Aren't you scared? Everyday?".  Now my friend Sue used to call my daughter Elizabeth Taylor with bad teeth (because she has this beautiful chestnut hair and violet eyes; but she was also like a shark, she had over 22 teeth pulled out of her mouth, they just kept growing back all crowded and crooked ~ thankfully she doesn't bite). So she looks right at me with these big, beautiful, long lashed, incredible purple eyes and says "No mom. It's just a part of who you are, and you can't be scared of who you are."

Bing! Pop! From the mouths of babes. It was the best (and only) advice I've ever heeded when it comes to facing my MS.  I never have gotten to have a pity party. That's ok though, I don't even drink gin. One more secret exposed. : - )