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!

And the Verdict Is In……

Well I got some good news today. Turns out that despite the MS diagnosis, the baclofen, the 3 day naps, the walker, the hirple, the walking stick, the solu-medrol infusion, the hand numbness, the scooter, the endless Dr appointments, the tripping, and the exhaustion, according to the US government I am not disabled after all. Whew! What a relief!

In spite of receiving this happy missive this morning in the mail, it prompted somewhat of a mini-melt down on my part. Fair enough, I think. There went Plan A out the window and for the first time I felt hopeless, frustrated and quite frankly, afraid. Egad, now what!?

I will sort this out. It will take time, patience, perseverance, smarts and not a little cunning. I need to let the state of Arizona know ~ maybe they’ll take me off their disabled list since Uncle Sam says it isn’t so? A little unemployment aid would come in handy right now….

In the meantime, now that I am able, I think I am going to go for a run. Or wait….maybe just a hirple with my walker instead.

Friendship

30 years ago today was a Friday night, memorable because Friday was “Dallas” night ~ that super cheesy, south fork forty, drama that captivated so many of us for so long.

I was living with Ken, the girls father, before we were married. He informed me that Friday night, that a friend from work was coming over with his girlfriend. Oh for Pete’s Sake. NOW? But Dallas is on! This was pre-TIVO and -DVR, so there was no chance of watching it later. Suffice it to say, I was NOT pleased.

I hauled myself up, changed out of my PJ’s, and  got myself in the mind-set to be polite to the co-worker and his no doubt ho-hum girlfriend. I pasted on a smile….the doorbell rang…Linda walked into my life.

Now, we’ve all met someone we really hit it off with right off the bat. To say that about Linda and me was putting it mildly. We started jawing and laughing and talking and confiding and crying and sharing right out of the gate, and we haven’t stopped since. You could not find 2 more disparate women when it comes to many things about us, but the essence of our friendship is built on a core of understanding, respect, humor and love.

We went to each other’s weddings. We worked at the  same company. We were pregnant together. We went through our divorces together. We went through children’s illnesses together. We decided one New Year’s eve that computers were stupid and made a New Year’s vow never to use one. We moved each other in and out of houses. We held each other’s hands through heartache and happiness. We traveled together. We were business partners. We’ve mourned the loss of friends together. Linda was with me when I was diagnosed with MS. We’ve always been slightly in awe of our friendship. It has withstood 30 year’s of life’s travails, and we are both surprised and eternally grateful.

I am blessed with many life long and long term girlfriends, as well as many new friends. I never take any of them for granted. Dorian, Tanya, Kate, Betty, Cathy, Rose, Joanne, Zirka, Cari, Maureen, Letitia, Chris, Margaret, Sue, Nan, Karen, Meg, my mom, my sister, my daughters…the list goes on and on. All these amazing women bring something so special into my life and I love them all.

Linda, however, is the only one crazy enough to remember that we met on the 3rd week of February, that it was a Friday (she was mad she had to miss Dallas too, initially) and that it was 1981. I can barely remember my own name somedays, so this is just one more reason why I love her. Happy anniversary, old friend ~ here’s to 30 more!

Plan B

My brother Dave called me the other night. He’d been reading my blog and was alarmed on my behalf that I have no income. Rightly so. I’m a little bit alarmed too. Unfortunately, when he called, I was suffering from some back pain ~ apparently I pulled a muscle while sleeping. Really? How the hell does that happen? I am totally down (albeit really bored) with having MS, but back pain? No way.  Although the pain is now mostly gone (it’s easing it’s way down my leg and out my toes), it has left me a little grumpy.

Now Dave was asking me if I have a Plan B. That got me thinking, do I even have a working Plan A? I suppose it is to get approved for Federal SS disability and work part time marketing produce (which I’m finding I really enjoy), consulting with my brother-in-law on his fishing websites, the occasional wedding with Anna, and of course, the ever profitable cow headbands.

Plan B. Finding, falling and marrying a rich rancher. Winning the lottery. Discovering uranium under my floorboards. Actually Plan B looks pretty much like Plan A, only more of it. Work. Work. Work. I’ll get my piece of that 50 trillion dollars Dave, don’t you worry.

Bladder Blog #4

I’m back from 10 days in California. During that time I watched the Super Bowl with Anna (ok, the last 3 minutes anyway); shopped for and cooked a birthday dinner (ok, Liza made the dinner) for my friend Tanya; called on my first grocery chain and talked about banana and tomato programs; went to the produce market with Liza; went to the flower market and put together 15 wedding centerpieces with Anna (ok, she designed them, I just copied); spent the night with my friends Betty and Bob; set up the wedding flowers; consulted on some advertising plans; had my hair cut (thank you, B!); went to a mall (twice!); did 2 store produce department site visits; washed and dried most of my clothes with a lipstick, and drove 8 hours each way there and back. Oh yeah, and had another botox treatment. And I’m wondering why I’m so tired!

I think I may have finally nailed it. I had a prescription for Ativan from my solu-medrol roid rage experience and I asked Dr. G if it would be ok if I took some prior to the treatment. Generally he gives me a little valium and I squirm and gasp and cry and cuss, despite it, and we both agree that we are not BFFs for those 15 minutes. So when I asked him about the bigger daddy Adavan, he said, “oh yes. Please do.” I took 2.

Although it was Anna’s turn to accompany me on this visit, Liza came with me instead. As an EMT, she is a virtual rock when it comes to anything medical procedure related, whereas Anna is more like me, squealing at a pinprick of blood. Bright girl that she is, she brought in an LA Times crossword puzzle book and proceeded to yell out clues which all 4 of us in the room were yelling out answers to. It proved a wonderful distraction. I was also stoned out of my mind.

I only yelled out the answer “F*** you!” (or variations on that theme) about 4 times. Considering the names I’ve shouted at Dr. G during past procedures, we all agreed that was pretty good.

So now I’m back home in Tubac, worn out and sleepy. But I’m wearing a thong.

More Scootin’ Along ~ Guest Post by Steven Miller

My friend Steven is one of my very best friends. He has his own health issues and certainly his very own style of wit. He offers this guest blog ~ hopefully his first of many! Without further ado, welcome Steven!

More Scootin’ Along

My name is Steven and I do not have MS. I am a music producer and consider Erika one of my very closest friends. The NAMM convention she describes in her “Scootin’ Along” story is one of the most noisy and physically exhausting environments I have ever encountered. I have always marveled at those had to endure the non stop madness for days on end.

Manny’s Music in New York City is perhaps the most famous music store in the US. On any given Saturday, the store is jam packed with 30 guitar shredding kids plugged into amps turned up to 10, 20 or more; drummers violently assaulting various kits and congas; and countless folks pounding on a vast array of keyboards and synthesizers. Add to that trumpets and trombones blaring, and well, you get the picture. The sheer cacophony is simply astonishing.

Now, imagine that x 1,000!!!!! That is the mind numbing experience known as NAMM. Good luck trying to hear anyone talk to you unless their mouth happens to be no more than 4 inches from your ear.

As an attendee, my limit was 1 day for about 3 hours max. Any more than that and your brain throws up the white flag before completely shutting down. Even if you don’t touch alcohol, I guarantee that you need at least a few drinks just to come back to earth after even just 3 hours in the convention center.

As luck would have it, I developed a music software product a few years ago, and you guessed it. My NAMM status immediately morphed from attendee to vendor. From that point on, I would no longer have the luxury of leaving when I reached the breaking point. I now had to demonstrate my product every second of every day!

While I was bemoaning this situation to Erika, we were also discussing her upcoming NAMM reality – introducing a red scooter as her newest and most eye catching fashion statement since a particularly alluring blue silk number that used to attract potential clients by the dozen.

While I do not have MS, I am afflicted with a severe back ailment that sometimes requires weeks of uninterrupted bed rest. I count myself very fortunate when I can get through any 24 period without crippling pain. The catch is that I never know what is going to transform a good day into a bad one. Sometimes it is a cough, sometimes it’s just lifting the lightest of items off a desk, and sometimes it’s simply turning my head the wrong way.

Near the end the first day of NAMM, I was in the midst of my umpteenth product demonstration when I spotted Erika’s red scooter rounding the corner to the isle I was situated. While trying to simultaneously keep eye contract  with my audience and the various computer screens that contained my demo material, I couldn’t help but notice that the scooter was heading straight into 4 foot tall stand that held a large speaker.

Knowing she had laid waste to one booth already, I was not eager to see her plow into this thing and have a 75 pound speaker come crashing down on top of her. I thought that maybe she would eventually recognize her predicament, but unfortunately was distracted by industry friends wanting to greet her and the red scooter.

Time was running out and impact was imminent. On top of this, I was still conducting my demonstration while trying to figure out how to stop this disaster. Luckily, I caught the eye of an assistant and simply said “Erika.” With that, I turned my head to the left to point out the situation that the assistant needed to deal with. To my shock and dismay though, the act of quickly flinging my head hit the proverbial spinal jackpot – sending excruciating pain throughout my body and almost launching me out of the high stool I was sitting on.

At that same moment, blood curdling screams and all forms of low brow expletives came roaring out of my mouth at a high pitched squeal. And if that wasn’t enough, I was wearing a headset microphone for the demonstration that was being pumped into some good sized speakers.

Apparently, this all added up to cause the volume of my amplified voice to be far and away the loudest element in the already deafeningly loud convention center hall. This became clear when virtually all time and space stopped momentarily. The hall became like one of those classic EF Hutton commercials – “When EF Hutton speaks, everyone listens.” Suddenly, you could hear a pin drop. It was like someone hit the mute button of the TV set and everyone just stood in place.

And funny enough, even though this was hardly how I planned it, my outrageous pain did at least serve the initially intended purpose. Erika did slam on the breaks as everything and everyone around her stopped in their tracks. So while she avoided deadly contact with one of JBL’s newest speakers, I was writhing in pain directly in front of 40-50 people who still were interested in the finer points of my software product.

When calm was restored, Erika asked what all the fuss was about. As it turns out, she had no idea how close she was to disaster. Even in my highly diminished state, I had to laugh. But the funniest thing though was, at that point, I needed the scooter just as much as she did! Although she declined to lend it to me, I did forgive her.

Is It A Little Warm In Here?

It’s been exactly one year since I moved to Tubac from LA. My, how time flies! When I first moved out here I don’t know that I was intending to stay permanently ~ my best friends were in LA, my girls were in LA, my clients were mainly in LA,  there is sushi in LA…..oh, and did I mention I hated the desert and the heat?

The number one question we all ask upon meeting someone new is “What brought you to Tubac?” (or, as Dr. G put it when I told him I was relocating, “Why the f@*& are you moving out there!?”). In my case, I have some very dear and long time friends (note: I didn’t say “old”, guys if you’re reading this) that I thought were nuts to leave the stunning California coast of Santa Barbara and relocate to the middle of NOWHERE. Nonetheless, I came to visit them and saw how beautiful it actually was out in Tubac and thought…are they nuts? It’s in the middle of NOWHERE!

My company was in the middle stages of despair and starting to require that we took unpaid furloughs in 2009. I knew if I stayed in my home office I’d just mope, so I came out to Tubac again to see my buddies. And again. And again. I got the whim that I should buy a condo out here, rent my place in LA and move to the desert.

I discussed with my girls, got the thumbs up from friends and family (the change will do you good) and went to Nicaragua with my sis. The whole escrow/closing/moving thing was a nightmare ~ I landed in a 3rd world country without final closing docs and everything I owned on a truck headed out to the middle of nowhere (that I was about to call home). Fast forward ~ everything worked out by a hair’s breadth, my friend Kate and I packed up the cats and voila! I moved to Tubac.

Now if you have or know someone who has MS, you know heat is not our friend. Hmmmm you’re thinking, then why did you move to the desert? Now there’s a good question. Well, LA gets hot. I mean, come on, how bad can it be? Well I’m here to tell you. It can be bad. I haven’t yet broached the subject on this blog of one other condition in my life: menopause. I was totally lulled into comfort during the spring months by the most spectacular sunrises, wildflowers, blue skies, mountain vistas and sunsets. The hot flashes every 20 minutes were tempered by the cool evenings and mornings and dips in the pool during the hot afternoons.

And then came summer. Honestly, I thought I was never going to be cool again in my entire life. Temperatures soared well into the 100s. The breezes stopped blowing. My body was a soggy, irate, dishrag 24 hours per day. I started drinking tequila which I hadn’t touched in 37 years (one of those old high school “to-kill-ya” stories) as a margarita now and again does seem to dull the heat prostration.

I’m happy to report I lived. I am now happily ensconced out here in the middle of nowhere with a wonderful support system of amazing friends celebrating my one year anniversary. Apparently, since I made through the summer I am now considered a native. Temperatures have cooled down considerably, by about, oh, 100 degrees. No one ever warned me about the winters here!

The Best Time

It’s been 10 months since I was laid off from my cushy, six figure job, that I really no longer enjoyed, nor excelled at. Despite going from $10,000 per month to $0 per month income, I am having the best time!

I think it’s because I am learning again, so consequently I feel energized and engaged in my life. Granted, it can be a little scary some days, but due to good planning on my part (I surprised even myself) I still have some time before I need to move into my car.

Writing this blog has proven to be one of my favorite activities. In just one month I’ve had over 725 unique visitors (that’s pretty darn good!) and am now rated on Alexa.com at 18,279,024. Google better watch out~ I’m coming up from behind! Lisa is encouraging me to monetize and has sent me some very interesting and exciting articles on how to do that, so check in early and often please to keep those traffic numbers growing!

In addition to blogging and making headbands with Anna, I’m also writing for some friend’s websites (construction and real estate). Anna and I are doing floral arrangements for a wedding next weekend in California. My good friend V. from Nogales is teaching me about produce marketing which I’m finding really fun ~ it’s a nice change from microphones. That being said, one of my old partners in crime is looking into some opportunities he might have available for me back in the music/pro audio world; and my brother in law wants to tap into some of my advertising brain power for his commercial fishing websites.

See? Doesn’t that sound way more fun than doing the same job year after year for a big, feckless corporation that changes management like the oil in your car? As I’ve said before, with the global economy worth somewhere in the neighborhood of 50 trillion USD (that’s $50,000,000,000,000) snagging a little piece of it to cover my ass-ets doesn’t seem too daunting now, does it?

Meet Nicole!

I posted a while back about my friend Nicole who lives in Nashville and her comments on Nashville TV about Obama Care. I love Nicole ~ she and I have shared our MS stories for the past 5 years, and as I mentioned before she is beautiful, talented and creative. She has volunteered to share her voice with me here on this blog ~ hopefully she will become a regular contributor. Welcome girl!

It’s the Mental Game that is Important in our Fight

If I’m honest I knew what it was when I woke up 5 years ago with numbness in my hands and feet.  Denial is a powerful thing.  I am an event planner and was in the middle of the biggest event I do all year.  The day of the event was finally here and by the end  I couldn’t even stand.  I told everyone, including myself, that I was so stressed over the event that I had caused this reaction in my body.

I went home, got a good night sleep and convinced myself that if I just resumed my normal schedule that day I would be just fine. That didn’t work out so well… I made it as far as the parking lot of the Starbucks.  There is just something about lying on hard, hot asphalt, staring at the sky that makes you confront your situation and melts that denial right away.

So, the MRI told me what I knew.  I had MS.  The same disease my mother was diagnosed with while training for a triathlon in the mid 80’s.  This disease had left my mom paralyzed in a wheelchair and a shadow of her former self.  I was scared.  Very scared.  I had what they called a “massive onset” which resulted in some paralysis and oh…. I went blind.

It is my personality to fight till I get what I want and what I wanted was the head of the MS department at Vanderbilt to be my doctor.  He was not taking new patients.  When he eventually took me he told me the best advice I have had this whole time.  “You’re biggest challenge is going to be mental…. not physical.”  See, I had seen the movie of my mom’s rapid decline and just knew that was the fate that awaited me.

Well, here we are 5 years later and I can walk, talk, type and SEE.  I am responding well to Beta Seron, which ironically my mom participated in the clinical trials for but was too far gone to be helped.

I challenge everyone with MS to heed Dr. Moses words…your biggest challenge is mental not physical.

You can do it!  You are doing great and the best you can!  Slow and steady wins the race!

Nicole Cochran, January 30, 2011

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