And it’s Uno! Dos! Tres Strikes You’re Out!

Back in the fall of 2009, Lisa called me and asked me if I wanted to go to Nicaragua with her for a week. Yes! I wanted to go! I think she was a little surprised by how quickly I acquiesced, but believe it or not, Nicaragua had been on my bucket list of places to go. My ex Ken and I went to Peru back in the 80’s because all our friends were going to Italy – so unexceptional. No one went to South America (except us). Now the hot spot is Costa Rica…and no one goes to Nicaragua. That’s how it made my list.

I told my sister that based on the fact I was buying a condo in Arizona and the NAMM show was coming up, all things timing wise should fall nicely for us to leave at the end of January. This gave me plenty of time to pack, get the house fixed up and be ready for the tenant to move in on February 1. I would need a nice holiday post NAMM and I could return rested and meet my belongings in Arizona (which Elizabeth was spearheading) and start my new life.

The first little niggle came when I had to have the notary for my mortgage papers meet me in Anaheim at the NAMM show. I suggested we meet in my room at the Marriott. The poor dear. She drove from LA to Anaheim on a Friday night which took her over an hour in traffic. She had to park 4 blocks away and wade through some….let’s just say “festive”…. show attendees; a marching band outside; a drum circle in the lobby and a mariachi/trance band in the bar. You could still hear hints of this cacophony up in my room on the 9th floor.

She held it together as best she could as I signed ream after ream of paperwork. After about one hour, she took a deep breath and headed back out into the wilds of Anaheim on the first night of  NAMM. I’m sure she was happy to see the last of me. Little did she know.

Sunday night, post trade show I headed home and swapped suitcases. I had one packed with business clothes, and one packed with vacation clothes. Everything else was mostly packed up and ready for the movers on the following Tuesday (which as I mentioned, Liza was managing for me). The next morning, I get a call from my mortgage broker in Arizona telling me that all the papers had to be resigned and re-notarized. It turns out there was some discrepancy in the paperwork due to state laws of some sort. Whatever, I didn’t really care. My notary friend drove back over to my house and I signed reams and reams of paperwork, again. Another day through the system, and voila! the keys would be mine.

I hopped on a plane the next day at LAX and met up with my sister who was flying from Seattle, at the Houston airport. Yay! We’re on vacation! It’s coming together! Just as I am stepping on to the plane (literally) my phone rings and it’s my mortgage broker. I need to sign more paperwork. There are some signatures missing. No big deal. I am way ahead of him and have left a signed power of attorney giving Elizabeth signing authority.

No. If she signs on those four dotted lines, the WHOLE shebang needs to be resigned and notarized. Oh for heaven’s sake. I tell him that everything I own is being picked up by a moving truck the next day and is being shipped to Tubac (where I won’t be BTW, because I’m…on…my…way…to… NICARAGUA YOU FOOL!).

What can I do? I order a drink, fly with Lisa to Managua, and decide to deal with it the next day. We get to our final destination via what I remember as donkey, motorcycle, and wagon. This is in fact just how everyone around us is getting to their destination, we’re actually in a nice car compliments of Lisa’s friends.

We settle into an amazing house which we share with Max and Judith Bailey, replete with an indoor swimming pool. The Baileys are a wonderful couple from Seattle, parents of my sister’s friend that is our hostess in Nicaragua. The next morning we head over to Tamara and Jonathan’s  house where he miraculously has email, Skype, a scanner and high speed internet. I find out that none of the remaining 4 signatures need to be notarized, so I sign, send and pray. Either I will end up in Arizona in a home, or a dumpster. Fortunatley, we all know how that ended up.

After this crisis is averted, the BIG news is revealed. The Nicaraguan baseball World Series is taking place in Granada where we are staying: the Orientales de Granda vs. the Leones of Leon. We can get box seats for about $15 US per person – are we in? Are we in? Are you nuts!? Lisa and I and the rest of the gang can’t get to the stadium fast enough.

This is baseball like none of us have ever seen before. Holy shit! There are riot police in full regalia lining the infield.

There is food (I use the term lightly) being served that is like nothing I’ve ever seen before that is gray, gelatinous and being served in a banana leaf.  This picture doesn’t do it justice, this dish actually looked vaguely edible with identifiable fruit and chicken or something.

The stands are PACKED beyond belief with both sides chanting, pounding, screaming, threatening, pushing, taunting, drinking, shoving, singing, hollering ~ we are talking some serious team spirit here. Lisa and I kept wishing our brother Dave had been with us. He would have loved it!

So, of course, during the midst of all this mayhem and chaos, I have to pee. Lisa generously offers to come with me (have I made it clear before how much I adore my sister?) and together we somehow manage to conscript a policeman to escort us as we slog through the myriad of drunk and rabid fans to the….bathroom? No. Toilet? Maybe. Pit? We’re getting closer.

There is a line (ah, one thing seems universal in all cultures ~ the line to the “ladies room”). I stand there for about 15 minutes until I get to the front and am told via gestures, giggles, pointing and pantomime, that unless I cough up some córdobas for a scrap of toilet paper, I am out of luck. I of course, have left my purse brimming with cordobas up at the seat which is far, far, far away. The police escort is long gone.

I am directed to another line where the general consensus I take away is that they are a little more generous and I can just go pee after the appointed waiting period. Not so. By the time another 20 minutes has passed and I get to the front of that line, I get the same story – no cordoba, no paper, no pee. Oh My God. As if.

By now I’m doing the pee dance and ain’t no way I’m not getting past the paper squad and into the bathroom (I’m still naive enough at this point to think there are stalls – hah!). I start enunciating in my loudest, proudest American that I am from Los Angeles, California ~ an exotic and rare bird here in the wilds of the Granada national baseball stadium. It works. A piece of paper is actually gifted to me and finally! it’s my turn.

There is a stall of sorts. 3 raw concrete walls and a square concrete pit. Let’s not forget that I must catheter in order to pee at all. Holy cripes. This is a challenge even for an old pro like me. I gingerly lean my hand on the wall, do my business, and get the hell out of there. I take advantage of a plastic oil barrel filled with cold water to wash in.

Agghh!! I feet like I’d passed some sort of test ~ a nightmare pee test. The oddest thing of it though, is that all the women in there were funny, friendly, joking, curious, kind and helpful. Despite the crude conditions and lack of privacy there was the same old female bathroom camaraderie that you might find at an airport, a theater or Dodger stadium. Just a bunch of cordoba packing, beer drinking, gelatinous-banana-leaf-wrapped eating gals enjoying a game.

Although this isn’t something you’d find in too many tour books, going to the World Series in Nicaragua with my sister is one of my fondest memories in life to date. And best of all, the home team won ~ go Granada!

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.

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.

Bladder Blog #3 ~ We’re Live from LA!

In my last post I mentioned not having any dignity, that’s BS. I have lots of  dignity, but zero modesty left, as you will soon find out. One more time: graphic content warning!

Well now it’s weeks later and I am one happy continent girl (is that the opposite of incontinent?). The hideousness of the injections are a thing of the past ~ like childbirth, the end result is so amazing you forget the discomfort. I go in for a follow up visit and…oh, no, really? In a nutshell it goes like this: put on a gown, wire up again like before (only this time all the tubes are connected to a computer), drink a bunch of liquid, sit on a chair with a hole in it and a bucket underneath, and wait to pee. Makes sense, this is an experimental clinical trial after all.

Oh yes. Lest I forget…. in the room with me in this rather indelicate position are: Dr. G, his nurse, the clinical trial coordinator, the clinical trial nurse, two visiting doctors and Anna. Seven people. All chatting like they are at a cocktail party about which movies they’d seen lately, who won the game on Sunday, future vacation plans. Meanwhile I’m on this jerry-rigged porta-potty in a hospital gown relishing the absurdity of it all and waiting to take a piss.

Eventually I pee, the computer monitors it, everyone puts down their martini glasses, I get $250 for my troubles, and Anna and I skedaddle as fast as possible on out of there.

Fast forward a few months. I get a call from Dr. G which is unusual in and of itself, but his reason for calling is even more unexpected. It seems KTLA or one of the local stations has gotten wind of the fact that he is heading up this new use for Botox and wants to interview him on a health segment. “Well, that’s dandy!” I say, innocently. He then goes on to explain that the station wants to talk to a patient in the trial, and he figures I’m the only one in the group with both the elan and the cojones to do it.

Now I’ve never been too shy, but this is pushing it, even for me. I take some time to think it over and realize that a) the whole point of a clinical trial is to hopefully help people who are suffering b) I have already sat through a gathering where the main event was me peeing in a bucket and c) the whole thing is so preposterous, why the hell not. I can only hope none of my clients watch afternoon TV, because I do question the professionalism of my decision.

The day I’m scheduled to do the interview, Paris Hilton comes to my rescue. She manages to get herself arrested and all the news crews flock to the scene of this hot breaking story. I have to agree, even Paris is more interesting than my bladder, and certainly a better news draw. Saved!

Not so fast. They are adamant to cover this story. A week or so later, a cameraman and a reporter come to my home office and interview me there.  They take pictures of the cover of the magazine I work for (gulp), state my name (double gulp) and put the camera in my face (gasp!). So here I am now talking about my lack of bladder control on a TV camera. Does this not explain why it’s not so hard for me to approach this topic anymore?

As it turns out, the only person I know of who saw it was some friend of Anna’s (“Hey, I think I saw your mom on TV the other day!”). Lucky for me.

And so ends this initial episode of the Bladder Blog. Unfortunately, it is an ongoing saga and I may post more on it as I am inclined. My intention was not to make anyone uncomfortable, but rather to share my experiences outright for those of you reading this who suffer the same issues and indignities as I have. The whole topic is tricky but know that you are not alone!

Bladder Blog #2 ~ Pins and Needles

So we left me in San Diego with my sister playing with catheters. I know you’re dying to know what is next, and as promised, here we go. Again: be forewarned. This is an awkward topic and I’m telling it like it happened and it gets a little gnarly.

So Dr. G comes in on my next visit (I’m going to say this is in early  2006 or so) and virtually sings out, “We’ve got options!”. Imagine my anticipation and delight if you can. He goes on to explain a new clinical trial he is heading whereby people who suffer from incontinence due to neurological issues or spinal injuries can partake of injections of Botox into their bladder.

Hmmmm. Let’s think on this a minute. Go ahead and let your imagination run free….no matter how you spin it you’re going to come up with pretty much exactly what is going happen. Well by now, I’m a total pro at the catheter thing, so how bad can this be? The end result means I might be able to wear a thong again, so it will be so worth it. Right?

Let’s do it. I sign on and have an ultrasound done, sign some paperwork and fill out a lengthy questionnaire. Due to incontinence am I depressed? Embarrassed? Hindered in daily activity? Concerned about catheterizing all the time? Well geez, I wasn’t until they brought it up!

I schedule the appointment for the procedure and take Anna with me (the girls take turns with who goes with me). They insert lots of various tubes in various openings and then douse some of those openings with Lidocaine to numb them. Then Dr. G comes in and inserts a camera (by which he informs me I can watch the progress of the events as they are happening on a monitor nearby. Um, no thanks.) Without being too much more graphic (although I DID warn you) I am injected multiple times in my bladder with the Botox.

According to Dr. G, 99% of the patients in the trial feel minimum discomfort. Need I tell you what percentage I fell into? I actually went into a little bit of shock. Shivering, crying, wobbly, that kind of thing. It didn’t last long though and there was no lingering discomfort, so off we went.

What follows is urinary bliss. People who don’t suffer from anything related to going #1 take it so for granted, as did I for years. Why would you not? We’ve all be peeing since birth (although in a diaper I might add…I’m just sayin’) and it’s a natural no-brainer. All of a sudden within days I was back like a semi-normal person, no longer like one of those people in the TV commercials whose whole life revolves around running from bathroom to bathroom.

Per the clinical trial expectations, the Botox is supposed to help for 6-9 months. Fortunately for me, I also feel into the 1% and mine lasted for 16 months. Damn good thing too, because I dread going back (I’m headed to California next month for my 4th treatment). I will be taking a thong to wear home though.

That’s the end of installment #2 of the Bladder Blog. Next is when I take it on local TV (come on, you didn’t really think I had one shred of dignity left, did you?). Stay tuned (pun intended).

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.