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.

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.

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

News from Bedrock

I’ve been staying with Anna and Chad over the last week in California as I had appointments both with Dr. G for more bladder stuff, and Dr. S for a check up post solu-medrol infusion in November.  Yesterday morning on my last day there, I was sleeping dreamily in their very comfortable guest bed when my cell phone rang. It was an Arizona number that I didn’t recognize, so I picked it up with a sleepy “hello”.

“EL-LO? EL-LO? AIR-EEK-HA?” Oh my god. It was Dr. S from Tucson, the creepy Dr. who gave me the social security disability exam. WTF does he want? He talks like Fred Flinstone with a thick accent (Spanish or Mexican). Imagine Fred letting the cat out and getting locked out and yelling “WHEELMA! WHEELMA!” and you get the idea. Then he adds “OHHH, OHHH, UMMM” at the end of each statement. And as is hopefully conveyed by the ALL CAPS, he talks really loudly. Yet, he doesn’t listen at all.

He goes on to yell at me that I had promised to send him previous MRI reports and accuse me of not sending them. I informed him that, indeed, I had had them faxed over the very next day. “I DIDN’T GET THEM. THEY ARE NOT HERE ANYWHERE.” I reiterate that they were sent over that very next day.”OHHHH, OHHHH, WELL I LOOK FOR THEM. NO THEY ARE NOT HERE.”

Now, in addition to waking up in this alarming manner, I am also disturbed by the news that he has not sent in the report to the SS administration. I spoke with someone there last week who informed me that they had all the necessary information and would be making a decision by February 15. Based on what I wonder?

I inform Dr S. that I will have them faxed over again. “YOU DON’T HAVE THEM? OHHHH, UMMM. YOUR DOCTOR IN CAL-E-FORN-E-A HAS THEM? UMMM. OHHHH. YOU DON’T HAVE THEM?”

I’m rolling my eyes until they’re about to fall out of my head and gritting my teeth so hard they’re about to pop out too. This guy is bad for my face.

My beloved neurologist Dr. S. in Pasadena has the reports, so again I call his office and ask to have them resent, which is handled quickly, professionally, and quietly. I confirm Dr. S. in Tucson has received them. So now I wait.

Yabba dabba do!

Newly Diagnosed

I’ve been here in California for the last week and will be coming back regularly for the next few months, so if my posts are sporadic that’s why. I’m back doing Dr appointments with both Dr G. and Dr S. and will report on those visits soon.

Elizabeth took the day off from driving the ambulance to spend the day with me (bless her heart ~ it makes these Dr. days so much more fun) and during the course of the day she told me her friend’s girlfriend was just diagnosed with MS last week. She is in her mid 20s. Her friend (let’s call him Cody as I can’t remember his name) told Liza he was so scared, and she said to him “you’ve been reading everything you can find, huh”. He confirmed they’ve both been Googling like mad.

It’s a fine line. Newly diagnosed, you want to find out everything you can and education is critical in dealing with your new condition. I did the same thing and read books like the catheterizing MonSter ladies book and it terrified me more than I already was.

I’m glad I don’t travel much anymore because the hype about bed bugs alone is enough to keep me from ever sleeping anywhere ever again. I’ve already burned my suitcase, all my coats and my bed because as the news reports, they are everywhere! I’ve started brushing my teeth 4 times per day for 2 minutes each time as apparently bad gums will give me a heart attack. I need to consider going braless as my bra is restricting my lymph nodes and raising my risk of breast cancer.

You get the idea. For the newly diagnosed I don’t even recommend reading this blog. The whole bladder Botox thing, the scooter, the steroid infusions…it is all scary shit! When it comes in a natural progression you’ll discover how resilient and strong you really are.

My advice: take a deep breath, read at a gentle pace (unfortunately, you’re in it for the long haul…plenty of time to research), process slowly, go have a long sleep, and don’t let the bedbugs bite.

Egad – Health Care…..

I am not very politically inclined and this is certainly not a political blog. However, being unemployed and conceivably uninsured within months, I feel my poor chewed fingernails are due some explanation as to why they are getting so much attention lately.

Looks like Arizona is disinclined to give me any unemployment benefits due to my disability classification (except I have not been officially classified yet).  The Feds are pondering my medical reports and will advise me of my SSD status by Feb. 13. I’m in Limboville right now, and will keep you posted.

My dear friend Nicole, who lives in Nashville, has been diagnosed with MS for 5 years. You would be hard pressed to find a more positive, sunny and hardworking person than her. She has been betrayed by the system over and over, and still doesn’t complain. She just wants to see things righted, and she wants some help.

The health care bill no doubt has lots wrong with it, and many ramifications to small business owners, taxpayers and others. I don’t purport to have any understanding of it at all, really. Two things stand out though, that are like beacons of hope to those of us who have a chronic illness, are self employed or unemployed, and single. The bill offers us 1) guaranteed insurance of some sort and 2) exemption from pre-existing conditions bias. Remember that Elizabeth is a Type 1 diabetic, so this super important to her as well.

When my COBRA runs out, and if I’m not yet approved for federal disability health care, my fingernails are going to be giving tips to my knuckles on how to survive. I don’t even like typing this and putting it out there, but it is a reality. I hope for my sake, Nicole’s sake, Elizabeth’s sake and all our sakes that this issue gets sorted out one way or another so that this great country of ours can live up to it’s tenets of brotherhood and love. We don’t want a hand out, we just want a hand to help us.

Tennesseans voice concern about possible health reform repeal

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.