Bladder Blog #1 ~ Not for the Faint of Heart

I Googled this phrase…I thought it was feint of heart, but turns out it is faint of heart. At any rate…..

Warning: If you aren’t used to doctors poking around in your orifices or are in the least bit squeamish about these things, then skip this post. This one is written most specifically for my MS brethren who have suffered the indignities of medical procedures and have given up all hope of retaining any sense of modesty since we started having our brains x-rayed. If the idea of having an airport security body scan bothers you, move along.

Incontinence. How embarrassing can it get? People telling jokes about Depends that we only give a curt smile to and then move on (I actually know a funny one, but maybe another time). It is high on the list of  MS symptoms and almost everyone I’ve ever met with MS shares this inconvenience with me. (If you’re daring enough to be reading this after my warning, I have news. Chances are running pretty high that even you will be personally interested in this topic someday).

I’ve been seeing my urologist, Dr. David G., for about 8 years. He’s a handsome blade, very suave (I’ve never been able to figure out how you can combine suave and urology, but he has), and cutting edge in his affiliation with USC. Over the years we tried Detrol to control the urgency, which worked up to a point, but I was still wearing a pad. Then one visit after an ultrasound he pronounced that I was not voiding completely ~ oh for god’s sake, really? What does that even mean? Well in his Dr. words, my bladder was a cess pool. EWWWW!!!!! Solution! Please! Now!

Fuck. The solution? Catheterizing. When I was very first diagnosed I bought a book on MS that was written by all these very “evolved” women who called it the MonSter (oh, so clever) and I hated them and the book because they gave their condition so much power. Nevertheless, they talked about having to self catheter and I thought NO WAY that is the worst EVER! Hell will freeze before I ever do that!

Hell froze over.

I was not only peeing in my pants every 5 seconds, but it was because I was only ever “topping off”. The only solution to empty the old B was to catheter. Holy crap. I went in and had a lesson (I am not making this up ~ can you imagine that being your job?) and glumly went home with my new “gear” and cried and cried and practiced and cried.

I remember going to San Diego not long after to meet up with Lisa and her family who were down from Seattle on holiday. She, being my number one go to rock, suggested I show her how it was done. My wonderful sister sat with me in a hotel room while I demonstrated my new found skill and held me while I cried, laughed with me at the absurdity of it all, and as per usual, was a beacon of strength and inspiration to me. My sister, as they say, is the bomb.

Believe it or not, this is just the beginning of the bladder story. There are more installments of the bladder blog, but it’s getting late. Why don’t you all go have a pee and we’ll reconvene tomorrow.

Smarter Than a 5th Grader

As I’ve said before, I’m applying for SS disability. Everyone from my friends to my own Dr. have told me it won’t go through the first time, and that I’ll need to get a lawyer and appeal. Ah, America. Sigh. Believe me, if this thing could get cured, I’d be the first person in line to shred the application.

Anyway, about 2 weeks ago I went in for my mental exam. Similar to my sense of playing pretend during the physical exam, this consisted of playing with blocks, counting backwards and naming the current president.

The oddest thing was, when Dr. M opened her mouth and said hello, I started to cry. I am not a crier. I can see baby seals being clubbed on TV and be outraged. I can have my heart broken and drink whiskey. I can read about tsunami victims and send money. In my day to day life, I buck up. I am a bucker-upper.

So what the hell was this all about? I hadn’t even told her the name of the president yet, and here I was crying. Not a drop or two, but a full on Kleenex/not able to talk/hiccuping kind of a cry. The Dr. handed me the box of tissues and asked if this was normal behavior. I should say not!

When I was able to talk it all came pouring out. Being at a disability exam is down right humiliating. I don’t want to be disabled. I repeat. I don’t want to be disabled. Like renting the scooter, this was another landmark event bringing it all home. This time, in addition to being plain mad, I allowed myself to be sad for a change. I dipped my toe into the pity party pool for a few minutes and, truth be told, it felt good.

It didn’t last. I can’t feel too sorry for myself. When I think of all the poor baby seals and broken hearts and tsunami victims I recognize that I don’t have it so bad. I found out after spelling my name backwards and defining “foreboding” that I am still smarter than a 5th grader, and THAT is something to hang on to.

Today I am headed off for the physical side of the SSD exam. Doubtful if this time I’ll tear up, more than likely I’ll just hirple the hallway under the Dr.’s watchful eye and hopefully get a bad enough score on my gait to exempt me from future lawyers and appeals. Stay tuned.

State of Mind

The State of California has totally thrown me under the bus. I calculate that I have paid in the neighborhood of over $50,000 in income taxes over the past 10 years and have lived and worked there for most of my life. I’m 53, have been working for 35 of those years in California, and even not being very good with math, can figure out I’ve given the State a lot of money.

So when my 26 weeks of unemployment ran out, what did they do? They denied my extension and threw me over to Arizona where I now reside. Bless little Arizona, they are at best a poor cousin to their next door neighbor. I’m not surprised at the disparity…..honestly, Arizona charged me about 1/3 the amount for a drivers license as California and it’s good for like 20 years or something. No wonder they’re broke!

There are no physical UE offices here, so it all must be done by internet.  Ok, no problem. The online application asks some questions such as “have you worked out of state in the last 18 months”. I answer yes and am prompted to call in. I slogged through the phone system and finally got to an unemployment agent, and he was as nice as could be. Friendly with all the time in the world. After we discussed the SF Giants winning the 2010 World Series and his inherent dislike of the LA Dodgers because his parents were originally from SF and that’s such an age old rivalry even though he now lives in Arizona and is a Diamondbacks fan, he explained that I must file online.  I explained that the online prompts to me to call this number.  He explained back to me that I can’t file a claim without a PIN that can only be established online. Wow.

He gave me some super secret information which I will not divulge publicly here (I told him I had rooted for the Giants too, that must have done it), and I was in the system. So then I crawled back into the mire of the telephone system and waited and waited (and waited…and waited) until the next super nice agent came on. She and I had a nice long conversation about her niece who has MS and how her disability application was coming along, and how her aunt (the niece’s mom) got disability for just knee surgery and diabetes, not even anything like MS, yet the niece had been denied twice already.

I felt I was making good progress and it had only taken me about 3 hours so far. This nice lady filled out my application for me and told me it would take a few days for them to decide if I was approved or not, and I would find out by mail. Then a one week waiting period, and if things went well I could expect to start receiving a weekly check.

As you can no doubt ascertain from the amount of taxes I paid California, I was making some pretty good money back in the day. California pays out a pretty healthy weekly benefit…Arizona, not so much.

So now I have a new challenge. There are billions and billions of dollars in the global economy, and I need some of them. It’s time again to recreate myself and my wealth. Rule number one, be open to suggestions. I have some of my own nuggets, but anyone else have any ideas?

New Year Resolutions

I love the whole idea of New Year resolutions. Having a clean line of delineation between “before” and “after” is always so, well, defining.

“An Oreo? Oh heavens no, I don’t eat cookies anymore”. “Watch TV on a Saturday afternoon? Oh no, I only work out now on Saturdays, no more afternoon TV for me”. “Go to the mall? No thanks, I’m off to go call my mother, I do that religiously every weekend”. Ad infinitum. Since this last Saturday morning, Jan 1, 2011.

We all have the best of intentions in giving up our little personal illicit activities (ok, chocolate might not be that illicit…) but like many things, as we all know, we skip one day, which turns into 2, which turns into a month….

I’ve often wondered why it’s so hard to give up Chunky Monkey ice cream…why can’t broccoli or brussels sprouts be so alluring? “Damn, what a day ~ let’s put it behind us with some cauliflower!”

But on a more serious note….I can’t tell you what I would give to be able to fulfill a New Year resolution to go running every day. To walk a mile every morning. To learn to salsa dance. To go to work everyday brimming with energy (of course fortified with fresh fruit and an egg white omelet…no donuts here, that’s on my resolution list!).

But I can wake up every morning and breathe clean air, look around me, feel the sunshine on my skin, hear the birds yammering and be grateful for all those things. I can still read, write, eat, laugh and hirple.

I would like to challenge each of you reading this to stop for a second and be grateful for what you can do. If you can dance, walk, run, ski, hike, skip ~ go do it. Today. Now. Skip to work. Hop on one foot to the busstop. Dance your way through the day.

One day, you won’t be able to do those things anymore. Guaranteed. Don’t be someone who looks back on life and thinks “Crap. I wish I’d gone dancing and eaten more green beans.”  Be one of those people who looked at the line and crossed it with a belly full of vegetables, and an ice cream cone in hand, doing the limbo and then sliding into home plate.

Scootin’ along

Last year, prior to my blogging hiatus, I wrote about renting a scooter. Subsequently I promised to share that experience here, so let’s get to it.

NAMM. The National Association of Music Merchants as it used to be known, now called the International Music Products Association. This is a convention held each January in Anaheim, CA and it is the Holy Grail for musicians. Anybody who is (or wants to be) anybody finagles a pass for this trade event in order to check out the latest and greatest in gear, catch up with old friends, network and be seen. (Back in the old days we’d make up badge names to give to our friends like Dwight Mansburden, Mike Oxlong, and of course the Stitz sisters, Gloria and Norma ~ think on it, you’ll get them. But I digress….)

So after my NY debacle, this is where I opted to make my scooter debut. I rented this cool red number that was delivered to the Marriott for me. When the bellman rode it in, he looked pretty happy and a tiny bit smug, and at that point I wasn’t sure why. Whatever dude, here’s a couple of bucks, thank you very much.

I stopped and started and jerked it up to my room. Music hipsters, generally with attitude, held the elevator doors, asked others to wait, gave me big smiles and aided me in guiding my way up to my floor. I was genuinely warmed by their helpfulness, and quite frankly, a little surprised. I’d run into a lot of these same folks in previous years later at night and they were not nearly so genteel.

In the morning, I gathered my briefcase, computer, purse, media kits, a sweater and loaded up the buggy. I banged into every surface of the hotel room maneuvering out into the hall and finally got sorted out and on my way. The same ilk of hipsters (slightly less effusive on the dawn, but still helpful) got me down to the lobby and I was on my way. Once I got outside to a clear sidewalk, I got the bellman’s smirk. This sucker was fast!!

There was just one tiny problem. In addition to being fast, it had a hair trigger going both forward and backward. My fingers have a tendency to be a little numb all the time, so I couldn’t always tell how much juice I was giving, or which direction (forward or backward) I was going. No matter, let’s get on with it!

I pulled into our booth where our marketing manager Kirby was suitably impressed (and I think a little jealous) when he saw my cool ride. Showing off a little, I gunned it, and proceeded to go through the wall of our booth right into the one behind us. Uh oh. I was laughing so hard I was crying. A nice, tiny, foreign woman came around the corner apologizing for her booth having been in the way and Kirby shooed me off while he took matters into his very capable hands. I felt I was off to an auspicious start. (In hindsight, I was laid off 2 months later, so perhaps it wasn’t so auspicious after all).

At any rate, I had a wonderful time motoring around as did my clients. This was my 29th NAMM show (as in yes, I attended my first show in 1981) so of course there was a lot of meeting with old friends, who all wanted to take a spin. My friends John and Dusty really took it for all it was worth and raced around the convention center sending attendees scattering. It was joyful to watch.

I was sorry on my final day to turn it back into the bellman (who was happy to see me, and now I knew why). Not only did I feel remarkably refreshed after a 5 day convention, but I had discovered a new side to the  humanity of NAMMsters.

I made myself a deal years ago that I wouldn’t go to NAMM for 30 years  (egad ~ an old rockster, the worst!) and thanks to the alignment of stars and endless management changes at my old company, I will not be attending this month. That is a relief, but I must admit, after finally taking the scooter plunge, I was kind of looking forward to again hurtling around on that bitchin’ red scooter, as I’m sure were Dusty and John.

A hop, a skip and and a hirple

I play a lot of online Scrabble on Facebook (called Lexulous) with my mom and I cheat. I use one of those word generator web sites that help you put your letters together into words most people have never heard of, let alone used in a sentence.

In order to make myself feel better, I always look the word up though (so if Mom questions me I can say, with confidence, “oh, what a childish jape they played on her!”). So imagine my utter delight in discovering the word hirple.

To hirple is to walk with a limp. It also has the distinguishable honor of being one of two words that rhyme with purple (the other being curple ~ you look that one up).

Naturally, I prefer hirple to limp. So does my Mom, who at 90, has just recently started using a walking device ~ we now prefer to go on hirples together, rather than plain old walks.

You won’t find it in every dictionary (although apparently it is in the OED, the grandaddy of all dictionaries). Lest you don’t  believe me, it can be found in the Urban Dictionary and MSN Encarta:

Please add hirple to your daily vocabulary and let’s see if we can get it to rejoin all the English dictionaries out there. I would hate to see such a fantastic word disappear completely from our lexicon.

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 somehow…like 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 know….you’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.

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 little Edens?) 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.

Bad knees

I came home from NY with one clear decision made. The next trade show I have to do is in Anaheim, CA for 5 days in January. It will be big, loud and exhausting. I’m going to rent a scooter. This probably seems like a relative no brainer, since I came home from NY unable to do anything but crawl from the couch to the kitchen to the bedroom. But let me reiterate. I am going to rent a scooter. This will mean I am disabled. Officially validated. Confirmed. Staggering around Manhattan like a drunken crab didn’t mean I was disabled…I was just tired… jet lagged… had a long day at the convention. Saving my energy however, by renting a scooter means I am a disabled person. Yikes. I called my sister Lisa to discuss. She was supposed to be headed to NYC next week to run a marathon; but filled me in that she had torn the meniscus in one of her knees. Ouch! So no running for her for a while. No weight on it really at all for a while. Wow! Does this mean my strong, vibrant, fit sister is disabled? She is pretty down about it. Her knees are kind of going bad on her, and she’s freaking out a little. All of a sudden renting a scooter didn’t seem so daunting. If my amazing, athletic sister might need a walking device, then maybe it’s ok if I do too. I’m giving up walking like a gimp, but she’s giving up running 26.2 miles. I’m never going to run that race, but hopefully, she will be back out there inspiring me to always go that one extra mile.

October 25, 2009

La Crescenta, CA