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

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.

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.