Category Archives: Twitter

Are All Friends Alike?

ENB Dallas 2009

My father always said that if, at the end of our lives we could honestly say that we had one friend, we would die rich.  That the word friend was not one to be used lightly. When I came home from school, and said my new friend this or my new friend that, he’d correct me, telling me that until our relationship had grown into something significant, we were simply acquaintances.  Like the bumper sticker reads, “A friends will help you move, a real friend will help you move a body”, we were never to take friendship for granted.

In this age of short tenure employment, neighborhood turnover, and Social Media, does friendship really mean the same thing today as it did in my father’s day? Let’s face it, the days of the gold watch and living next door to the same family for 30 years are the exception in 2010. Families are geographically dispersed, dependent more and more upon the Internet to communicate. Friendships from our youth are being rekindled through Social Media. Some of these so-called friendships fit more closely into the category my father referred to as acquaintance, and would have been better served remaining in the past. But, that’s another story.  Facebook has become the new calling card; Skype brings you right into people’s living rooms – and bedrooms; and Twitter has made everyone a cross between Tom Brokaw and Dr. Phil, with a little Joan Rivers thrown in.

At one point, I would have written that Social Media friends are the same as real life ones. The people who have come into my life as a result of social media are fascinating, enriching, and from a wide range of socio-economic levels and geographic regions. I have laughed, learned and commiserated with men and women whose faces I have no way of knowing are really accurately portrayed in their avatars. We’ve debated health care, marriage equality, global warming, you name it. I’ve learned of their illnesses, and felt real emotional distress as I worried waiting for test results. Waited for that tweet with news. Social media has made the world very small.

On more than one occasion people have disappeared. As suddenly as they appeared in my life, they were gone.  Once, the Twitter account was suspended without explanation, and since I really had no solid way of knowing if the person I was friends with was who she said she was, there was no way to track her down. When someone’s avatar is a an ethereal image or a cartoon, or even a face, how do we REALLY know it is them?  In the case of another friend, the updates just stopped. Nothing.  After months of nightly discussions on the most challenging of topics, sharing our love of Pearl Jam, music trivia, all I heard was crickets.

Today, I went to contact a friend, and noticed that she had unfriended me. That I was no longer her ‘friend’ on Facebook. This saddened me a bit because I never wish to be on the outs with anyone. However, at this stage of life I’m not really concerned about popularity either. The big difference here is if we were really friends, by my father’s definition, I would have picked up the phone and called her. In fact, if we were real life friends, she would have called me if there were a problem. That’s what friends do.

Because I travel full time, I’ve had the opportunity to meet dozens of people in real life (IRL) who I had first encountered through social media. There is no question that the ante is raised once we meet, shake hands, hug each other, share a meal, really laugh out loud (LOL) together. The same way I met my husband through Social Media, in this case, Match.com, the guy he was in his profile was great, but the warm, loving man he was (is) in person was so much more.

Yes, social media is a great door opener for meeting people, learning, sharing, rallying causes. But, just as Internet sex doesn’t replace lovemaking, and Zhuzhu’s don’t replace man’s best friend, Internet friends won’t be the ones you call when your car breaks down, they’ll be the ones you tweet about it.  And, the picture? This was taken in November 2009 in Dallas, TX when a group of us who had met on Twitter got together for the premier of Men Who Stare at Goats. I had met Mark Hundley @MarkHundley, Jamie Inman @ibeatcancrtwice, Jessica Moore @inspiremedaisy, Scott Whitelaw @lifecruise,  and Karen Brown @Toadjumps on Twitter, and the friendship Stewart and I have with these people after meeting in person is much richer than before. There’s just no getting around what happens when two dimensions become three.

Welcome to the Cape, Where Upper Is Lower

You’re wondering why there is a picture of Rosy the Riveter here. Seems like every time you turn around, someone is using Rosy’s image for one cause or another. I will get to why the old gal’s here shortly.  In the meantime, let’s get caught up from where we left off. Last time I updated this blog, Stewart and I were breaking bread in our Nation’s capital with our friend Ali Holden.  As much as we would have enjoyed lingering for a few days, taking in the sights and sounds of Washington, D.C., we were still on our quest for cool weather.  With Peregrine in tow, we were on a mission. Sweater weather or bust!

Amish Farm

The drive through the Northeast is beautiful. We decided to take a roundabout route to Cape Cod in order to avoid driving through New York City.  The interstate highway system is great when you’re in a hurry to get from A to Z. However, we wanted to see as much as we could on our way to the coast.  Plus, our only real deadline was fireworks in Provincetown, MA by Fourth of July.  So, once we drove through Baltimore, MD, we detoured towards Lancaster County, Pennsylvania and Amish country. How beautiful everything looked in late June! The fields were burgeoning with corn, hay and other vegetables.  Families worked together as horse drawn buggies rolled by with their reflective  triangles attached to the back – the one concession to modern road hazards.  I’m not going to get into whether I agree or disagree with the Amish lifestyle here, as I grew up among the Lubavitch, a branch of Chasidic Jews, which is also beautiful and full of old ways that seem quite foreign to the casual observer. The Amish have simply chosen to follow their faith, and the do’s and don’ts of the Anabaptist tradition. One of those traditions among the Old Order Amish is not having their pictures taken. Do you think this stopped Stewart from trying to capture their graven images on his iPhone? Not for a second.  You should have heard him. “Quick, get a picture of that family in the buggy!” And, “Hurry, the kids are facing you, get ’em!”.  I thought I’d have to lock him in Peregrine until we got out of Pennsylvania. You can only imagine his reaction as we passed through Intercourse!

Tourists by, Chaim Gross

Cape Cod had been our destination for Fourth of July since we started our adventure on the road. Over and over (to Stewart’s chagrin) I had made my desires known that no matter where we were on the 3rd and the 5th of July, I was spending the 4th in Provincetown, MA.  There is an energy there that is hard to match anywhere else. It is the busiest time of year to travel to, and be in Ptown, as others seem to have figured this out as well, but I didn’t care.  I wanted the excitement of fireworks over the water. For those of you who regularly follow our adventures, you know there’s a hiccup in here somewhere. This time is no exception. I let Stewart make the reservations. Yes, you would think I would have learned after “Bug Island” (See Tale of Four Cities), but between the countryside of Pennsylvania and the sea grasses of the Cape, I was flat on my back in Connecticut. With July rapidly approaching, and me unable to sit up, I asked Stewart to see if he could find us a great campsite for a month on the Cape. In fairness to him, the deer in the headlights look that this request was met with was borderline pitiful. My back trumped his discomfort, and off to explore the internet he went. Two days later (!) he returned to the topic of our accommodations, all excited because he had found us a place at a campground that was so friendly that they didn’t even require a credit card in advance to reserve a spot. Normally, I would have been extremely suspicious, but this time I was so relieved to know we had a place to stay that I convinced myself that these folks were just trusting, and that Stewart had developed sufficient rapport with them over the phone that they didn’t want to insult him by asking for money. Travel day arrived, and off we went.  Pulling Peregrine behind us, with Jeffrey and Emma painting the rear windows with their noses, we navigated our way down Hwy 6 over the bridge that connects The Cape with the rest of Massachusetts. Traffic was fairly heavy, but we had a spot booked, so we were good to go. We made our way to  Bass River Trailer Park in South Yarmouth, MA. As we turned onto Willow Street, my heart sank, and panic began to set in.  We looked like the first arrivals since the 1970’s.  The place was a dump. There was no way I was staying there. Needless to say, it became perfectly clear why no deposit was required. “Don’t let them see us!” I exclaimed, “Quickly, drive to the corner and turn right!”

The Placemat

Immediately, I got on Twitter and, in 140 characters, explained our predicament. For months, I had been tweeting with people about coming here. Within minutes, the tweets came in with suggestions of places to go for the night, and for alternative campsites. This was the beginning of the busiest weekend of the year, and we had no reservations.  We found a hotel nearby where we stayed for the night to regroup. I plugged in my laptop, and within 15 minutes had us booked for three weeks at Shady Knoll in Brewster, MA.

Once that was all settled, we went exploring, and found a fabulous restaurant, The Riverway Lobster House, that had just opened its Bass River location that night.  Dinner had the expected opening night hiccups, but the friendliness of the staff, and the quality of the food more than made up for it. Any seafood restaurant that has cioppino on its menu gets a gold star in my book. Shady Knoll was beautiful. Our first three nights there, we were nestled in the trees, hidden away from everyone. Unfortunately, the site was promised to someone else for the holiday weekend, so we were forced to move. It worked out fine, because our next spot was bigger, and somewhat closer to the rest rooms. We were still rustic, as Shady Knolls has beautiful trees, and dirt paths with varied levels so no one is actually right next to anyone else. The flipside to this, is nightly I found myself wandering into someone else’s campsite – even with the aid of a headlamp. My suggestion at the camp office of the occasional reflector on  the odd tree or two was met with a knowing smile and a “no”. One of the best parts of our stay here in Brewster was the weather. We had finally found the sweater weather we’d been chasing. It was heaven – sweatshirts and flipflops.  It was very important that we made the most of our time here, so quickly, we fell into a bit of a routine – a vagabond’s version.

Jeffrey and Emma Looking for the Kennedys

Most of the beaches are off-limits to dogs (Cape Cod Friendly Beaches) , but after 5:00 pm, they are welcome in most places. In fact, the Cape is a very dog-friendly place, period. Each day, we would go about our business separately, then as the clock crept towards 6:00, we’d gather food, and head towards a different beach – preferably on the west side – to play with Jeffrey and Emma, eat, read, and see the sunset on the water.  Though it was high season on the Cape, the beaches were remarkably deserted. The homes that face these beaches are lovely, and over and over I found my favorite.  For those of you who have read or watched John Irving’s, The World According to Garp , I want Jenny Field’s house. After the sunset, the wind really picked up, and it got quite chilly on the beach. Off we’d head back to Peregrine for a campfire and some music, courtesy of Stewart.  I found some really nice roasting skewers at the camp store, and after much practice, mastered the perfectly browned marshmallow specimen. Stewart has informed me it is un-American, but personally, I feel eating a s’more is like eating cardboard with a hot mess trying to pour out of its center.

Waiting for Godot

One of the highlights of Cape Cod for me was the chance to eat fresh clam chowder on a daily basis. Each place claims the best on the Cape, and I made it my mission to see who was right. It will take another season for me to tell for sure, but so far the rule of thumb is the simpler the food stand, the better the chowder. That goes for the fresh crab as well. There’s something about sitting on wooden benches roadside eating out of plastic baskets that just feels right. If I was anywhere else, it would never happen. One place we liked in Brewster, Kate’s Seafood, serves really good lobster rolls. It’s not the place for fine dining, but then that’s not what this paragraph is about anyway.

Which brings me to the topic of ice cream. I’ve never seen anything like it. If you recall in my post on Nashville I mentioned the city’s affection for cupcakes. Well, Cape Cod and ice cream have something going on. Everywhere I turned was another stand enticing me to go over to the dark side of caloric, artery-clogging heaven.  I’ll mention one I visited on a couple (few!) occasions, Friendly Ice Cream in Falmouth. The “Create Your Own Sundae” feature is so much fun. Our server was very patient as I vacillated back and forth between the Heath, butter pecan, Butterfinger… you get the idea. The Mint Cookie Crunch is ridiculous! Here is a quasi-official tour map of the ice cream locales on the Cape.

Roger's old place

We made our way to Woods Hole at the recommendation of Roger Hjulstrom (@Booksbelow), who had previously worked and lived there. The village life ebbs and flows with the sea – the marine life, Oceanography Institute. Even the only road through town comes to a stop as boats pass under, and the bridge lifts the sidewalks into the air.  There weren’t many options for us to eat with Jeffrey and Emma, and Massachusetts has a law against sidewalk cafes without some sort of fencing or enclosure (no, I am not digging up the link for this), and we couldn’t find any that were dog-friendly. Fortunately, there was a very nice and tasty restaurant that was willing to sell us lunch to go, and then let us eat it outside on their tables. Fishmonger Cafe was reasonably priced and delicious. I took a break from my beloved clam chowder, and went with vegetarian black

Ocean ABC's

bean chili, which was one of the day’s specials. When I tweeted with Roger later that day, he informed me that I had managed to photograph Stewart and Jeffrey right in front of his previous home. Now, anywhere else this would have been amazing. In Woods Hole, Mass, population 925, the odds were fairly high we would pass by his house.

While at the Oceanography Institute gift shop, I took a picture of a t-shirt, and emailed it to a friend of mine, Elizabeth Williams Bushey, who happens to be an extremely talented children’s author and musician (among her many, many talents). In that email, I challenged her to come up with a musical accompaniment for the shirt. As anyone who knows Elizabeth will tell you, I was not surprised when within 24 hours I had a link to the Water ABC song.  Here is a link to Elizabeth’s award-winning site, Inkless Tales. If you have children or grandchildren, or if you just haven’t grown up, you’ll enjoy navigating this smorgasbord of fun delights.

Listen to the Water ABC song here.

My good friend, Karen Brown (@toadjumps) likes to think I’m a bit of a hippie, so to make her happy I went out and bought myself a tie-dyed dress that can be seen in this YouTube video if you have the patience to watch until the end INSIDE PEREGRINE. The other thing about this video is it was my first attempt with my 3GS, and it is a full tour of Peregrine.  I hope you enjoy it – and it doesn’t make you too dizzy. I’m still working on my videography skills, however, I have started using a Flip Ultra HD.

Cape Cod

One of the first people I met when new to Twitter was Diana E Jennings (@DianaEJ). Diana was a real life NASA scientist. Because Bush thought money was better spent on things like bombs and fences. many important science-related (not W’s best subject) jobs were cut, so now Diana has been forced to change fields. As any over-achieving,  brilliant woman would do, Diana has risen to the occasion, and is thriving in her new challenge as Director of Regional Outreach at Bridgewater State College But, that’s another article.  Like most of the

Diana, Alison and Zoe

people I have met through Social Media, I cannot for the life of me recall how we first crossed paths. Did I start following Diana one day, or was it the other way around? For the first months we interacted it was primarily in direct messages back and forth. Diana was quite private – back then – and rarely sent tweets out into the public stream. I, on the other hand, tweet about almost everything in public. The irony of this is in the real world, I’m the one who is more of a private person, and Diana is more extroverted. Anyway, back to the main point. Diana lives on the Cape, and we were finally going to meet IRL, or in real life. Her daughter, Alison was coming with her to see me, and to see Peregrine. Now, to a 15 year old, the idea of living in an aluminum teardrop rimmed in bright orange traveling the open road with no set destination or timetable, no rules or boundaries except those I impose upon myselves must seem just about as romantic as life can get. Jack Kerouac, a fellow Massachusetts native, had nothing on this gal – rambling around the country, blogging of her adventures as she pens her memoirs. Her husband, a musician, composes his music while her two dogs play blissfully. Oh Jeez, who could live up to that? Instead, Ali got a middle-aged woman (me), a bowl of nuts and an afternoon of great conversation thanks to HER fantastic tales of travels to the rain forest. We had such a wonderful time, and I’m really looking forward to spending more time with them when we’re back on the Cape this summer.

And, now this brings me around to the story of Rosy the Riveter, and how the iconic lady ended up at the top of my piece on Cape Cod.  While Sitting over a cup of my ‘special’ tea, I said something about going “up to Provincetown” at the weekend. Upon hearing my geographical faux pax, Diana, in her no nonsense New England way, pushed up her sleeve, pumped up her bicep, and proceeded to explain to me that just as her fist was higher at the moment, it was also a fact that her hand was lower than her shoulder. Cape Cod very much resembles a bicep curl – much like Rosy’s

Scott's treat

One final thing I would like to mention before closing. From time to time, people have asked me to keep an eye out for various hard to find items. Sometimes they are looking for a type of yarn that can only be found in a special area, or in one woman’s case she wanted me to head to Hartford, CT to flip her former employer’s world headquarter’s the bird (I did, and have pictures to prove it). When Scott Whitelaw @lifecruise read that I was on the Cape, he wrote to me asking that I keep an eye out for barley candy. So, as we passed through village after village, I kept my eyes open for a confectioner. Sure enough, on the way back from Wood’s Hole I saw one with lobster lolipops in the window.  Stewart drove around the block, while I ran in and bought Scott his childhood treat from a beloved auntie. He was so excited when he went to his mailbox in Houston, TX and found it there. A few months later, I got the chance to meet Scott when were in Dallas for the #ENB tweetup. But, that’s another story.

Welcome to My Twitterverse

This post has been brewing in my mind since early March. Had I written it then it would read very differently than it will today, or even yesterday or tomorrow. You see, my Twitterverse is fluid, ever changing. At times fun is abundant, with cleverness the most valued attribute. Other days are about sharing ways to make the world a better place. Days when I open link after link learning things I didn’t even know I didn’t know. And of course, there are those days when I can rant to the world at large, free to express my ire 140 spaces at a time.

For those of you who are not familiar with Twitter, let me take a a few lines here to try and explain. If you ever entered a chat room the concept will be fairly simple to grasp. If not, let’s give it a try, and if it still makes no sense, post a comment and I’ll address your specific questions the best I am able. Frankly, trying to explain it here is forcing me to articulate what has been an abstract up until now.

OK, I have tried writing this section five different ways, and have decided to seek out the best explanation already written by someone else. Why reinvent the wheel, right?

Here are what a couple of ‘authorities’ write about Twitter:According to Wikipedia, Twitter is a “free social networking and micro-blogging service that allows its users to send updates (otherwise known as “tweets”) which are text-based posts of up to 140 characters in length.” Right off the bat I must correct this definition.

Many complain about the 140 characters allowed in each tweet, when in reality it is 140 SPACES that are allowed. So if you tend towards the verbose (like me), you’re going to learn an entirely new form of abbreviation. Thus the proliferation of sentences that read like this: “it wld be SO GR8 2 have mark/color on @replies 2show U have replied back(like email) dont always rembr!” (source Sharon L Corsaro, aka @growinggold). I cannot tell you how many times since becoming a Twitter participant I have found myself writing just that sort of sentence IRL (in real life).

Pictured here is the dreaded and much blamed Fail Whale which appears whenever Twitter is down, loses our tweets or otherwise reeks havoc with our stream

I think this next explanation may be a bit more helpful for those who find even email challenging. How to Explain Twitter to Your Grandma: “Twitter is a free online service that allows you to send messages to hundreds of your friends all at the same time. Your Twitter friends receive an alert each time you send a new message either on their mobile phones and/or on their computer.”

Here is a short YouTube video that demonstrates even more clearly.

Now that I have done my best to explain Twitter, I will get back to what it has meant to me since joining 6 March. It is hard to believe it has been such a short time. My life is forever different because of this – no exaggeration! When I was flat on my back in the Florida Keys, I joined Twitter so I had something to do on my iPhone other than play solitaire. Little did I know that I was opening myself up to an entirely new world. It shouldn’t have surprised me, really. Stewart and I met on Match.com over seven years ago. I met one of my dearest friends back in 1995 while doing research for an article in an AOL chat room. My cousin, Alyson met her husband, Vopni in a chat room. It’s all around us. The primary difference with Twitter for me is the control I have over who is in my Twitter universe, or Twitterverse. If someone is offensive, I simply block them. That way their negativity no longer shows up in my stream, and I don’t show up in theirs. Unlike chat rooms, I don’t have to leave to get away from negative people. Instead, I tighten the net around my stream.

While we were in Florida, I decided I wanted to start a book club. Living on the road as we are does not lend itself to a traditional book club where we meet in each others living rooms once a week or once a month, but I knew that with the millions of people on Twitter I would find at least one other person who wished to read a book and discuss it. Danna Furnace-Grim (@_DANNA_) was the first to respond to my tweet asking if anyone was interested. She helped to research online bookclubs, and we publicized for others to join us. After we had a handful of interested peop le, we put out a few suggested books. Unfortunately, Danna was unable to participate as her boss does not understand the business potential of Twitter. He will soon enough, but for now we are able to continue to connect via Facebook (another story!). The most important criterion for me was that book was available as an eBook and it was free. There are over 28,000 eBooks available through Project Gutenberg, plus many authors have PDF versions of their books on their web pages. An eBook is available for anyone with a computer, so there is no carbon footprint (trees cut down, fossil fuels burned in production and transportation), and with money tight for many of us these days, free is something we can all appreciate and afford.

The book we decided upon was Wishcraft by Barbara Sher. Ms. Sher was generous enough to make her book available free as an eBook on her website. It is celebrating its 30th anniversary in print. The first time I read Wishcraft was in 1984. I was working a power job wearing a power suit. After reading and doing the lessons in each chapter it became clear to me I was not living my ideal life. I quit my job and went back to university to study my passion, political science. I was able to chart a path through life that worked for me because of this book. Thank you, Barbara Sher. Oh, and did I mention @BarbaraSher is participating in our Twitter book club, #booktweet? My lessons are now being reviewed by the author herself! Just another joy of Twitter. Six degrees of separation are reduced to one! For those of you who are interested, #booktweet meets Saturdays at 12 EDT.

Another influential author in my life is Paulo Coelho. I have read and re-read The Alchemist so many times I can practically quote passages by heart. When I had reached the point in politics where my rose colored glasses had been shattered along with my heart, I knew it was time for a change. A friend and I took a short trip to New Orleans, and walking through the French Quarter, I was drawn towards a bookstore small bookstore cramped full of wonderful books of every sort. The sort of bookstore of my dreams – a bit chaotic that requires real exploration. A small book with a purple cover caught my eye. As soon as I picked it up and began flipping through the pages I knew this was no ordinary book. I realized my friend was giving me a bit of a strange look, so after paying tucked the book into my pocket to be enjoyed in solitude later. Though a simple story, a parable really, its lesson was what I needed. I once again heeded the message in a book and moved to California to begin again. Since then, I have given away countless copies of The Alchemist, and have continued to be a devoted fan of Mr. Coelho. Imagine my excitement when I checkout my new followers on Twitter, and there among them was @PauloCoelho! By the way, there are several eBook available exclusively on his website, and we will likely be reading one of his books soon on #booktweet. Also, I was introduced to other fans/followers of Paulo Coelho, such as Maybelline Te (@maybellinete), who is an actual Santiago de Compostela pilgrim

Since Stewart and I are traveling full time we have been able to meet several people in person who we first met on Twitter. I’ve already told you about Tom Morris (@TomVMorris), Sandi McKenna (@McMedia) and James Johnson (@JamesIslander). Since then we have met Darren and Judy Reeves (@SuperDad_08 and @Judes_08), Mark Lesser (@DrMarkLesser), Mark and Vanessa Hundley (@MarkHundley), and Randell and Julie Hiltbrunner (@NikeStix and @SilverSmyth). Stewart and I had so much fun with these folks, we have now gotten together twice, and are meeting for a third time Sunday afternoon at Julie’s art show in Ft Worth. We are staying with our dear friend, Dr. Nancy McClellan while we are in Dallas. Nancy will from now on be known as @Nancy_Dallas. She and I will be having massages and body wraps at Sedona Spa by Zane Aveton (@Zaneology), and this week, Stewart and I are going down to San Antonio for a guitar jam session with Jeff Schechter (@ReallyShecky). And I must not forget my thrice weekly phone calls with Ponet (@Ponet), the Queen of CAPS!

Speaking of music, as I have previously written about, Stewart (@StewartRaven) is creating some amazing music on this journey. He has allowed me to publish a couple of his pieces on Twitter using an application named Twiturm that allows musicians to share their mus ic with the Twitterverse in real time. No need to create any fancy videos or negotiate with iTunes. One of the pieces I uploaded for Stewart was “Shades of Gloria in E”. Previously, I had contacted Rabbi Specht (@RabbiShaiSpecht) about Stewart’s music as he is a wonderful vocalist and lyricist. From time to time over the past three months Rabbi has “dropped by” to ask me if I had anything to share with him. When I tweeted him the link to Stewart’s new song, the sparks flew, and within 24 hours the vocals were sent back to me. Stewart and I worked together to mix the vocals and instrumental tracks, and within another 24 hours, “Shades of Gloria with vocals by Rabbi Specht was up on Twiturm. The first collaboration by The Raven and the Reb.
Shades of Gloria in E

My experience on Twitter has not been all rosy. As in the real world, there are flakes who are disingenuous and inauthentic. Though I am having difficulty getting an accurate count, it is fair to say there are around 10 million Twitter accounts. In a small town of five thousand there are jerks who first appear great. Why would the Twitterverse be any different!? For example, there is the Lothario who is in love with someone new each week. And the opportunists who care more about promoting themselves and their businesses than being authentic.

Then, there are the Celebrity Twitters led by Ashton Kutcher (@aplusk) and his wife, Demi Moore (@mrskutcher), Oprah Winfrey (@Oprah) and John Mayer (@johncmayer) who have thousands, even millions of followers, but only tweet to each other, and rarely follow any one back. And others hire people to tweet for them (@britneyspears). For example, John Mayer has as of this moment 1,241,175 followers, yet only deems 47 people worthy of following back. The arrogance of this is astounding to me. The beauty of Twitter is the back and forth exchange of ideas and information. If someone only tweets without ever jumping in and actually interacting with others, they completely miss the point. Go look in the mirror and talk to yourself, John.

There was one celebrity who was following me (he shall remain nameless), but would only interact with me in DM’s. After a few separate instances, I finally asked him flat out if he was embarrassed to be seen tweeting with a non-celebrity. His reply was to list me among his five top fans of the week. After I stopped laughing, I blocked him. I had never seen his show, and only followed him because he followed me first! I left him to Speidi.

A small group of us have become regulars in what we refer to as the #ENB club. One night we all happened to begin tweeting together and Jay Koch (@JayKoch) shared a YouTube video with us entitled “Ed Needs Bob

For some reason, this little video hit us all as hilarious. Stewart and I had tears rolling down our faces and pain in our sides as we watched it for the 19th time. He remarked that there needed to be an acronym for when something is so funny LOL and ROFL just doesn’t cut it. Jay shot back with ENB! So now whenever something is especially funny, we tag it with #ENB. We have learned since this started that this is either something that you get or not – a bit like gefilte fish. Either you love it or you don’t.

When I was heading to Kenner, LA for my appointment with the Neuroendocrine doctors at Oschner, I felt first hand the power of prayer. The folks whom I had grown surprisingly close to on Twitter acted as a support group for me in preparatio
n and during my ordeal. Each time I would log into my Twitter account, there would be multiple tweets folks had left me encouraging me, making me laugh, and teaching me new ways to cope with the results if they were less than stellar. It seemed that the entire Twitterverse knew when I was meeting with the doctors for the diagnosis. When I shared my good news, it was like a virtual wildfire with support and cheers tweeted and retweeted (RT). Stewart and I felt as though we were sharing our good news with a group of people who sincerely cared. In fact, one man asked for my telephone number so he could ring me. When he called, he told me he was completely taken by surprise by how much he cared. These are real people out there. It’s fairly obvious who is for real and who is not.

I know this is getting long, but bear with me (there ya’ go, Frank Feigert!) – are the products and resources I have learned about from others. For example, I was kidding around with Jane Johnson (@JaneEJohnson), Amy Kaster-Heath (@newmanzoo) and a few others about the unfair advantage men have when it comes to relieving themselves while traveling. Up pops a tweet in my stream (no pun intended) from Go Girl (@Go_Girls) about their product d esigned specifically for women to, well, go on the go. After as few tweets back and forth, I let them know where I would be that I could receive a package, and they sent me a couple of samples to try. I wasn’t sure if I would be able to go through with it, but my word is my bond so I went for it. I stepped into the shower and gave it a try. It was simple to use, easily washed for reuse and worked exactly as promised. A few days later we were on our way through Orange, TX when nature called. I stepped into the restroom at a small gas station, and was immediately grossed out. But then I remembered I had my Go Girl with me, and I was good to go. Granted, I still needed to touch the faucet handle to rinse it out, but I had a tissue in my purse, so cooties were avoided. The only thing that would make

it better is if they included a small case for storage similar to the old cigarette cases women used to carry. Something discreet without Go Girl written all over it for those times when my purse inevitably spills all over the floor. Thank you, Go Girl for making my odyssey that much better. Now, I just have to find an opportunity to write my name in the dirt!

It would be impossible to share all the ways Twitter has changed my life. When I mentioned to Mark Hundley I was covering this topic on my blog, he emailed this to me. I am including Mark’s words unedited:

If I were to answer the question as to how Twitter has changed my life . . . well, I’d start with YOU! Meeting you has been one of the most powerful blessing I’ve ever experienced! Without Twitter, our friendship would likely never have happened. Then there is Ponet . . . nuff said!
Twitter has given me chances to meet people from all over the world without ever having to leave my home! And when I say “meet,” I mean “get to know!”

How else would I have been invited to be the mental health expert for one of Dr. Mommy’s websites; or interviewed on ReclaimU radio program; or be able to send free copies of the CD to folks who either needed the information or have access to folks who need it; or find people like Susan Heim and Dr. Mia Rose to provide pertinent and appropriate endorsements for the Second Edition of Awaken to Good Mourning; or have a gentleman take on the challenge to single-handedly raise awareness about my Birthday wish withing his circle of influence as well as that of his wife; or meet fellow therapists for coffee to exchange ideas; or have tweetups in Dallas with the best people in the world; or have invitations from other writers/thinkers to collaborate on future projects; or . . . you get my drift?

I believe firmly in the Law of the Harvest — You harvest WHAT you plant, MORE than you plant and LATER than you plant — in relationships, business endeavors, humanitarian causes, attitudes, beliefs, actions . . . My participation in Twitter and my commitment to myself to be as honest, transparent and real as possible has made this experience one of the best in my life!

I look forward to continued participation as it evolves as well!

Jay Koch and Jamie Inman (@ibeatcancrtwice) are collaborating on a radio program. Kathy Ireland (@kathyireland) has started a movement to get Elizabeth Taylor (@DameElizabeth) the Presidential Medal of Honor. Twitter is an incubator for ideas and creativity in real time. I’m just happy I finally joined. By the way, the first person I followed was NPR’s Daniel Schorr (@DanielSchorr), who will be 93 years old in August. For all of you who think you are too old to jump in, think again. Look me up in the Twitterverse. As my TGDG (Twin Granddaughters, Different Grandmother) Jane often writes, “ttfn”.

@MaraBG

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style=”font-size:100%;”>This post has been brewing in my mind since early March. Had I written it then it would read very differently than it will today, or even yesterday or tomorrow. You see, my Twitterverse is fluid, ever changing. At times fun is abundant, with cleverness the most valued attribute. Other days are about sharing ways to make the world a better place. Days when I open link after link learning things I didn’t even know I didn’t know. And of course, there are those days when I can rant to the world at large, free to express my ire 140 spaces at a time.

style=”font-size:100%;”>For those of you who are not familiar with Twitter, let me
take a a few lines here to try and explain. If you ever entered a chat room the concept will be fairly simple to grasp. If not, let’s give it a try, and if it still makes no sense, post a comment and I’ll address your specific question the best I am able. Frankly, trying to explain it here is forcing me to articulate what has been an abstract up until now.

OK, I have tried writing this section five different ways, and have decided to seek out the best explanation already written by someone else. Why reinvent the wheel, right? Here are what a couple of ‘authorities’ write about Twitter:

According to Wikipedia, Twitter is a “free social networking and micro-blogging service that allows its users to send updates (otherwise known as “tweets”) which are text-based posts of up to 140 characters in length.”

Right off the bat I must correct this definition. Many speak about the 140 characters allowed in each tweet, when in reality it is 140 SPACES that are allowed. So if you are tend towards the verbose (like me), you’re going to learn an entirely new form of abbreviation. Thus the proliferation of sentences that read like this: “it wld be SO GR8 2 have mark/color on @replies 2show U have replied back(like email) dont always rembr!” (source Sharon L Corsaro, aka @growinggold). I cannot tell you how many times since becoming a Twitter participant I have found myself writing just that sort of sentence IRL (in real life).

style=”color: rgb(255, 153, 0);font-size:85%;”>(pictured here is the dreaded and much blamed Fail Whale which appears whenever Twitter is down, loses our tweets or otherwise reeks havoc with our stream)

I

think this next explanation may be a bit more helpful for those who find email challenging.

How to Explain Twitter to Your Grandma: “ style=”font-weight: normal;font-size:100%;”>Twitter is a free online service that allows you to send messages to hundreds of your friends all at the same time. Your Twitter friends receive an alert each time you send a new message either on their mobile phones and/or on their computer.” Here is a short YouTube video In Plain English that demonstrates even more style=”font-weight: normal;font-size:100%;”> clearly.

style=”font-weight: normal;font-size:100%;”>Now that I have done my best to explain Twitter, I will get back to what it has meant to me since joining 6 March. It is hard to believe it has been such a short time. My life is forever d style=”font-weight: normal;font-size:100%;”>ifferent because of this – no exaggeration! When I was flat on my back in the Florida Keys, I joined Twitter so I had something to do on my iPhone other than play solitaire. Little did I know that I was opening myself up to an entirel style=”font-weight: normal;font-size:100%;”>y new world. It shouldn’t have surprised me, really. Stewart and I met on Match.com over seven years ago. I met one of my dearest friends back in 1995 while doing research for an article in an AOL chat room. My cousin, Alyson met her husband, Vopni in a chat room. It’s all around us. The primary difference with Twitter for me is the control I have over who is in my Twitter universe, or Twitterverse. If someone is offensive, I simply block them. That way their negativity no longer shows up in my stream, and I don’t show up in theirs. Unlike chat rooms, I don’t have to leave to get away from negative people. Instead, I ti style=”font-weight: normal;font-size:100%;”>ghten the net around my stream.

style=”font-weight: normal;font-size:100%;”>While we were in Florida, I decided I wanted to start a book club. Living on the road does not lend itself to such and idea, but I knew that with the millions of people on Twitter I would find at least one other person who wished to read a book and discuss it. Danna Furnace-Grimes (_DANNA_) was the first to respond to my tweet asking if anyone was interested. She did research on online bookclubs, and we pu style=”font-weight: normal;font-size:100%;”>blicized for others to join us. After we had a handful of interested people, w style=”font-weight: normal;font-size:100%;”>e put out a few suggested books. Unfortunately, Danna was unable to participate as her boss does not understand the bu style=”font-weight: normal;font-size:100%;”>siness potential of Twitter. He will soon enough, but for now we are able to continue to connect via Facebook (another story!) style=”font-weight: normal;font-size:100%;”>. The most important criterion for me was that book was available as an eBook and it was free. There are over 28,000 eBooks available through Project Gutenberg, plus many authors have PDF versions of their books on their web pa style=”font-weight: normal;font-size:100%;”>ges. An eBook is available for anyone with a computer, so there is no carbon footprint (trees cut down, fo style=”font-weight: normal;font-size:100%;”>ssil fuels burned in production and transportation), and with money tig style=”font-weight: normal;font-size:100%;”>ht for many of us these days, free is something we can all appreciate and afford.

style=”font-weight: normal;font-size:100%;”>The book we decided upon was Wishcraft by Barbara Sher. Ms. Sher was generous to make her book available style=”font-weight: normal;font-size:100%;”> free style=”font-weight: normal;font-size:100%;”> to all on her website. It is celebrating its 30 style=”font-weight: normal;”>th style=”font-weight: normal;font-size:100%;”> anniversary in print. The first time I read Wishcraft was in 1984. I was working a power job wearing a power suit. After reading and d style=”font-weight: normal;font-size:100%;”>oing the lessons in each chapter it became clear to me I was not living my ideal life. I quit my job and went back to university to study my p style=”font-weight: normal;font-size:100%;”>assion, political science. I was able to chart a path through life that worked for me because of this book. Thank you, Barbara Sher. Oh, and did I mention @BarbaraSher is participating in our Twitter book club, #booktweet? Just another joy of Twitter. Six degrees of separation are reduced to one! For those of you w
ho are interested, #booktweet meets Saturdays at 12 EDT.

Another influential author in my life is Paulo Coelho. I have read and re-read The Alchemist so many times I can practically quote passages by heart. When I had reached the point in politics where my rose colored glasses had been shattered along with my heart, I knew it was time for a change. A friend and I took a short trip to New Orleans, and walking through the French Quarter, I was drawn towards a bookstore small bookstore cramped full of wonderful books of every sort. The sort of bookstore of my dreams – a bit chaotic that requires real exploration. A small book with a purple cover caught my eye. As soon as I picked it up and began flipping through the pages I knew this was no ordinary book. I realized my friend was giving me a bit of a strange look, so after paying tucked the book into my pocket to be enjoyed in solitude later. Though a simple story, a parable really, its lesson was what I needed. I once again heeded the message in a book and moved to California to begin again. Since then, I have given away countless copies of The Alchemist, and have continued to be a devoted fan of Mr. Coelho. Imagine my excitement when I checkout my new followers on Twitter, and there among them was @PauloCoelho! By the way, there are several eBook available exclusively on his website, and we will likely be reading one of his books soon on #booktweet.

Since Stewart and I are traveling full time we have been able to meet several people in person who we first met on Twitter. I’ve already told you about Tom Morris (@TomVMorris), Sandi McKenna (@McMedia) and Ja mes Johnson (@JamesIslander). Since then we have met Darren and Judy Reeves (@SuperDad_08 and @Judes_08), Mark Lesser (@DrMarkLesser), Mark and Vanessa Hundley (@MarkHundley), and Randell and Julie Hiltbrunner (@NikeStix and @SilverSmyth). Stewart and I had so much fun with these folks, we have now gotten

together twice, and are meeting for a third time Sunday afternoon at Julie’s art show in Ft Worth. We are staying with our dear friend, Dr. Nancy McClellan while we are in Dallas. Nancy will from now on be known as @Nancy_Dallas. She and I will be having massages and body wraps at Sedona Spa by Zane Aveton (@Zaneology), and this week, Stewart and I are going down to San Antonio for a guitar jam session with Jeff Schechter (@ReallyShecky). And I must not forget my thrice weekly phone calls with Ponet (@Ponet), the Queen of CAPS!

Speaking of music, as I have previously written about, Stewart (@StewartRaven) is creating some amazing music on this journey. He has allowed me to publish a couple of his pieces on Twitter using an application named Twiturm that allows musicians to share their music with the Twitterverse in real time. No need to create any fancy videos or negotiate with iTunes. One of the pieces I uploaded for Stewart was “Shades of Gloria in E”. Previously, I had contacted Rabbi Specht (@RabbiShaiSpecht) about Stewart’s music as he is a wonderful vocalist and lyricist. From time to time over the past three months Rabbi has “dropped by” to ask me if I had anything to share with him. When I tweeted him the link to Stewart’s new song, the sparks flew, and within 24 hours the vocals were sent back to me. Stewart and I worked together to mix the vocals and instrumental tracks, and within another 24 hours, “Shades of Gloria with vocals by Rabbi Specht was up on Twiturm. The first collaboration by style=”font-style: italic;”>The Raven and the Reb.

My experience on Twitter has not been all rosy. As in the real world, there are flakes who are disingenuous and inauthentic. Though I am having difficulty getting an accurate count, it is fair to say there are around 10 million Twitter accounts. In a small town of five thousand there are jerks who first appear great. Why would the Twitterverse be any different!? For example, there is the Lothario who is in love with someone different every week. Reading his tweets will leave the average person a bit nauseated as he tweets his love and devotion into the public stream instead of in Direct Messages (DM is a tweet sent directly to a friend that only they will see). No one really wants to read about what he wants to do to her when they eventually meet. If I were a betting woman, my money is on that never happening.

Then, there are the Celebrity Twitters led by Ashton Kutcher (@aplusk) and his wife, Demi Moore (@mrskutcher), Oprah Winfrey (@Oprah) and John Mayer (@johncmayer) who have thousands, even millions of followers, but only tweet to each other, and rarely follow any one back. And others hire people to tweet for them (@britneyspears). For example, John Mayer has as of this moment 1,241,175 followers, yet only deems 47 people worthy of following back. The arrogance of this is astounding to me. The beauty of Twitter is the back and forth exchange of ideas and information. If someone only tweets without ever jumping in and actually interacting with others, they completely miss the point. Go look in the mirror and talk to yourself, John.

There was one celebrity who was following me (he shall remain nameless), but would only interact with me in DM’s. After a few separate instances, I finally asked him flat out if he was embarrassed to be seen tweeting with a non-celebrity. His reply was to list me among his five top fans of the week. After I stopped laughing, I blocked him. I had never seen his show, and only followed him because he followed me first! I left him to Speidi.

A small group of us have become regulars in what we refer to as the #ENB club. One night we all happened to begin tweeting together and Jay Koch (@JayKoch) shared a YouTube video with us entitled “Ed Needs Bob”.

For some reason, this
little video hit us all as hilarious. Stewart and I had tears rolling down our faces and pain in our sides as we watched it for the 19th time. He remarked that there needed to be an acronym for when something is so funny LOL and ROFL just doesn’t cut it. Jay shot back with ENB! So now whenever something is especially funny, we tag it with #ENB. We have learned since this started that this is either something that you get or not – a bit like gefilte fish. Either you love it or you don’t.

When I was heading to Kenner, LA for my appointment with the Neuroendocrine doctors at Oschner, I felt first hand the power of prayer. The folks whom I had grown surprisingly close to on Twitter acted as a support group for me in preparation and during my ordeal. Each time I would log into my Twitter account, there would be multiple tweets folks had left me encouraging me, making me laugh, and teaching me new ways to cope with the results if they were less than stellar. It seemed that the entire Twitterverse knew when I was meeting with the doctors for the diagnosis. When I shared my good news, it was like a virtual wildfire with support and cheers tweeted and retweeted (RT). Stewart and I felt as though we were sharing our good news with a group of people who sincerely cared. In fact, one man asked for my telephone number so he could ring me. When he called, he told me he was completely taken by surprise by how much he cared. These are real people out there. It’s fairly obvious who is for real and who is not.

I know this is getting long, but bear with me (there ya’ go, Frank Feigert!) – are the products and resources I have learned about from others. For example, I was kidding around with Jane Johnson (@JaneEJohnson), Amy Kaster-Heath (@newmanzoo) and a few others about the unfair advantage men have when it comes to relieving themselves while traveling. Up pops a tweet in my stream (no pun intended) from Go Girl (@Go_Girls) about their product designed specifically for women to, well, go on the go. After as few tweets back and forth, I let them know where I would be that I could receive a package, and they sent me a couple of samples to try. I wasn’t sure if I would be able to go through with it, but my word is my bond so I went for it. I stepped into the shower and gave it a try. It was simple to use, easily washed for reuse and worked exactly as promised. A few days later we were on our way through Orange, TX when nature called. I stepped into the restroom at a small gas station, and was immediately grossed out. But then I remembered I had my Go Girl with me, and I was good to go. Granted, I still needed to touch the faucet handle to rinse it out, but I had a tissue in my purse, so cooties were avoided. The only thing that would make it better is if they included a small case for storage similar to the old cigarette cases women used to carry. Something discreet without Go Girl written all over it for those times when my purse inevitably spills all over the floor. Thank you, Go Girl for making my odyssey that much better. Now, I just have to find an opportunity to write my name in the dirt!

style=”font-size:100%;”>It would be impossible to share all the ways Twitter has changed my life. When I mentioned to Mark Hundley I was covering this topic on my blog, he emailed this to me. I am including Mark’s words unedited:

style=”margin-bottom: 0in;”> style=”font-size:100%;”>

style=”font-size:100%;”>If I were to answer the question as to how Twitter has changed my life . . . well, I’d start with YOU! Meeting you has been one of the most powerful blessing I’ve ever experienced! Without Twitter, our friendship would likely never have happened. Then there is Ponet . . . nuff said!

Twitter has given me chances to meet people from all over the world without ever having to leave my home! And when I say “meet,” I mean “get to know!”

How else would I have been invited to be the mental health expert for one of Dr. Mommy’s websites; or interviewed on ReclaimU radio program; or be able to send free copies of the CD to folks who either needed the information or have access to folks who need it; or find people like Susan Heim and Dr. Mia Rose to provide pertinent and appropriate endorsements for the Second Edition of Awaken to Good Mourning; or have a gentleman take on the challenge to single-handedly raise awareness about my Birthday wish withing his circle of influence as well as that of his wife; or meet fellow therapists for coffee to exchange ideas; or have tweetups in Dallas with the best people in the world; or have invitations from other writers/thinkers to collaborate on future projects; or . . . you get my drift?

I believe firmly in the Law of the Harvest — You harvest WHAT you plant, MORE than you plant and LATER than you plant — in relationships, business endeavors, humanitarian causes, attitudes, beliefs, actions . . . My participation in Twitter and my commitment to myself to be as honest, transparent and real as possible has made this experience one of the best in my life!

I look forward to continued participation as it evolves as well!
Jay Koch and Jamie Inman (@ibeatcancrtwice) are collaborating on a radio program. Kathy Ireland (@kathyireland) has started a movement to get Elizabeth Taylor (@DameElizabeth) the Presidential Medal of Honor. Twitter is an incubator for ideas and creativity in real time. I’m just happy I finally joined. By the way, the first person I followed was NPR’s Daniel Schorr (@DanielSchorr), who will be 93 years old in August. For all of you who think you are too old to jump in, think again. Look me up in the Twitterverse. Goodbye for now.

<@MaraBG

I would love you to share your experiences with Twitter. How has it changed your life?

I’m the Boss of Me!

Where do I start? I suppose, I’ll begin with the good news, then backtrack from there. I saw the
leading Neuroendicrine Specialists at Oschner in Kenner, LA yesterday, and they told me the oncologist was wrong. I don’t have Carcinoid cancer. The roar of “hurrah” and sighs of relief were
heard throughout the world as this news was delivered. But, how did I get here? How did the doctors get it so wrong?

In late 2005 I went to the doctor for symptoms that I don’t even remember. Whatever initially sent me to her office was quickly shuffled to the back burner as I was told I had Carcinoid Syndrome, and needed to be seen by an oncologist right away. This was two days before Thanksgiving. My daughter, Kate and her husband were coming to Fort Collins, CO for the first time since we had bought a home there, and I didn’t want this news to spoil their visit. Anytime we hear CANCER, images of death are not far behind. I made the decision to tell Kate because I had always resented being left in the dark ‘for my own good’ by parents, grandparents, etc. I feel it is up to each of us, as adults, to make up our own minds how we choose to process information. Kate was 27 years old a the time – certainly old enough to know.

Stewart and discussed it, and decided to have all the testing done as soon as possible. Test after
grueling test showed inconclusive results. I was exhausted, sore and disheartened after three months of non-stop poking and prodding. Finally, I told the doctors if it was so difficult to find, then obviously it wasn’t going to kill me any time soon. In the meantime, I was getting back to the business of living. I put the cancer diagnosis in a back corner of my mind and got back to my life. The Big C was still there, but it was no longer running the show. It stayed there until October 2008, when one of my doctors refused to treat me for something routine until I returned to the oncologist for a follow up. Reluctantly, and still nursing wounds from the first round of tests, I returned for my follow up. The diagnosis was confirmed with no specific point of origin – no change from 2005. The roller coaster ride recommenced. Do I? Don’t I? Where is it? How bad? Am I dying any time soon?

The primary difference this time was I had symptoms. People are always telling me how healthy I look, but one of the first symptoms of carcinoid is flushing. I also was experiencing other symptoms that when put together didn’t look good. In my heart of hearts I did not accept the possibility that I was actually sick. It felt surreal, like the doctors were talking about someone else. This time, they wanted to start me on the drug that I would then have to be on the rest of my life. It is an injectible, and has all sorts of miserable side effects. As much as I wanted to feel better,I felt like they were telling me I needed to use an elephant gun to kill a flea. I WASN’T SICK!

After much research on my behalf by Stewart and my dear friend, Nancy McClellan, DC, we discovered the best doctors around are in Kenner, LA at Oschner. These tireless research doctors moved from LSUHS after Katrina so they could continue their groundbreaking work with neuroendicrine tumours. Dr. Eugene Wolverting in particular makes himself available 24/7 to answer questions posed by the more than 4000 participants on the ACOR email list. He even goes so far as to list his cell phone number on his email signature. When was the last time your doctor gave you his cell number?! My compromise with Stewart and the doctors was I would begin treatment IF the doctors at Oschner confirmed the diagnosis and recommended I begin Sandostatine. In my mind, there was no doubt they would tell me this was all one big mistake. That I was just fine. So, I scheduled my appointment, made travel arrangements, and started the retesting process. 12 May was the appointed day.

The tests required for carcinoid are miserable, and have a set of challenges many are simply not up to at the time of diagnosis because they are too sick. For example, it took me over five weeks to get the lab that Oschner required me to use, to order the tubes for the blood tests. Next, the diet required for accurate results is difficult when I’m in my own kitchen. With my present living
situation, trying to collect a 24 hour urine, and keep it cold is challenging. We have no bathroom,
and our refrigerator is 3 cu ft. Have you seen the size of one of those collection containers? The
lab used the wrong tubes for blood, put wrong preservative in the collection bottle, the list goes on and on. this time I was determined -every test was going to be done perfectly, leaving no room for doubt – one way or the other I was going to know.

We arrived in New Orleans Wednesday 6 May. I was scheduled for octreotide and CT scans Thursday and Friday. The worst part of these scans for me is not the nuclear med injections, but lying still on the tables. I’m grumpy on a good day, but these tests back to back made me downright ballistic. Fortunately, Stewart understood this and kept busy. We ended up going out for some good food and good music. There was nothing we could do before Tuesday when I saw the docs anyway. May as well have some fun in NOLA, and it’s crawfish season! But, I’ll get back to the travel updates after this. For this blog, I’m concentrating on health. Monday over dinner, I put Stewart on the spot, and made him tell me what he thought the doctors were going to say. He said he thought it was a good chance I had it. I told him he was wrong, that it was all a mistake, and that I knew this down to my bones.

Tuesday, we got up and Stewart left a large perimeter around me. Experience has taught him I’m never happy about going to a doctor. This time was different. I had put my future into the hands of these doctors. Whatever they said would dictate the future course of my life. I was not leaving their offices without a definitive diagnosis. No more wiggle room. We arrived, and the first thing I learned was that all my test results had not arrived. furiously, I began calling the labs while the office assistant made calls to various agencies to find out what had happened. there was no more room for errors. I simply could not leave there without knowing. My heart sank to my feet. 15 minutes until I saw the doctors. With much arm twisting and the universe on my side, we were able to get verbal results with two minutes to go. A collective sigh of relief went through the waiting room.

When I was taken to the back, after being weighed (with my back to the scale) and height measured, I was taken into a room, and the nurse took my blood pressure. At this point, you would have expected my heart to be racing, and my pressure to be through the roof. Instead, I was calm and collected knowing I would get good news. If anything, my pressure should have been up in anticipation of good news. It was 99 over 63, with a resting pulse of 73. Not exactly stroke numbers! I was in the zone.

When the doctor asked me a slew of questions about my symptoms and other physical challenges I have, I was certain he was looking for some explanation for my diagnosis. I stopped him, and said to just give me a yes or no. No more grey areas. He said “No, you will live to be an old lady”. I jumped up, pumped my fist in the air and said, “I told you, WOOT!” Stewart was grinning ear to ear, and yelled, “Bitchin’!”. The doctor started explaining the reasons for the false diagnosis, but as far as I was concerned he may as well have been speaking in tongues. All that mattered was I was going to live, and of course, that I’d been right.

So now I need to address how they got it wrong, and how I feel about it. Let’s look at the first and
easier of the two questions, how they got it wrong. As I’ve written about before, carcinoid is a rare and often baffling disease. frequently, it is not found until an autopsy is done. It is slow growing, and relies upon markers to diagnose. The markers are 5HIAA and Chromogranin A. 5HIAA meas
ures the seretonin level, which is elevated in carcinoid patients. The CGA is secreted in carcinoid tumours. My results had been consistently high, but previously, the tests had not been conducted in as rigorous a manner, nor through the lab recommended by Oschner. Also, the dietary and medication restrictions required prior to testing for a three day period had been challenging for me because I need to take the drugs for other reasons. My oncologist, while a wonderful doctor, is not an expert in carcinoid, so didn’t have me restrict all foods and meds as required. The scans were inconclusive, but did not rule out anything, so couldn’t be taken as definitive.

Now, on to the more complex question. How I feel about this. Since I never truly accepted that I was dying this was not nearly as dramatic for me as it would have been if, say, I’d been rewriting my will and planning my funeral. On the other hand, I have given a corner of my mind over to this disease for three and a half years. I know that when I started gaining weight there was a part of me that didn’t care because I figured I’d need the weight when I started dwindling away, and what’s the difference what I eat if I’m dying anyway? May as well die fat as skinny!

I have had numerous medical dramas in my life. Only 2% survive the spinal meningitis I had in 1996. The Hepatitis C I got from a blood transfusion in 1981 left me with permanent damage to my liver. The list goes on and on. Each time I have come away a little more damaged physically, but stronger in spirit. This time is no exception. the gift of life has been tied with a bow and shiny paper, and handed back to me. As I relish this present I cannot look upon it with anything but hope. Hope for the future, and the knowledge that I can use this experience to help others on their journeys through sickness and wellness. I am truly grateful for this.

Way to Go, Uncle Rex

When last I updated this little monologue about our odyssey through the US, I put out a request for places to go and things to do next. Stewart’s uncle, Rex Amack, came through with flying colors. In fact, he so enthusiastically stood up to the challenge that I am dedicating this post to him. So, cheers, Uncle Rex!

As I wrote about previously, we were debating the West Coast of Florida or Hilton Head. We intend to follow, verbatim, the trip suggested by Uncle Rex (UR). We left the Keys and headed across the Tamiami trail through the Everglades to Naples, Sanibel and Pine Island. Next, we stopped in St. Petersburg. We’ll be in St. Petes for awhile since it is a great central location for many interesting and beautiful places. Now, that’s what I call participation! We will pick back up the rest of UR’s itinerary after NOLA.

Speaking of NOLA. The type of cancer I have is called carcinoid. I have Carcinoid Syndrome, which means that it is throughout my body and causes strange symptoms like flushing and wheezing. I plan on living a very, very long time with this disease, but it does need to be tended. The leading Neuroendicrine tumour specialists in the world are in Kenner, LA, a suburb of New Orleans, at the Oschner Clinic. The doctors there have been kind enough to agree to see me. I have been having a lot of bloodwork done along the way, and let me tell you, there are all sorts of obstacles the medical community puts in the way of us wanderers, but that’s another story. My scan dates are 7-8 May, and my consultation is 12 May. I will let y’all know how it goes. Obviously, what they tell me will have some influence on our trip. Not much, but some. Please take the time to learn about this often misdiagnosed cancer. It is often misdagnosed. In fact, the symbol for carcinoid is the zebra. “Just because you hear hoof beats doesn’t mean it’s a horse. It may be a zebra”.

Stewart and I are frequently asked about the logistics of an adventure such as ours. How we get our mail? How do we decide where to go? Don’t we miss home? These are just a few of the many questions we are asked all the time. I’m going to devote a few inches of column space to sharing some of the creative ways we are traveling unencumbered.

Our mail is sent to us by our wonderful property manager, Alex Lay. He fields the calls for the water heater, the trees needing trimming, he deals with all the day to day issues that keep our California home running and us worry free. Our mail is sent to his post office box, and he bundles it and posts it to us wherever we are. For those of you who are interested, the US Post Office does provide a service for a small fee that does basically the same thing. The big difference the post office doesn’t look through your mail for junk and items that are better handled by them. Thank you, Alex!

We have two iPhones, and as of a few days ago, a second laptop. The variety of applications available – mostly for free – on iPhone is staggering. We use no fewer than 50 apps on almost a daily basis. Here is a brief rundown of a few:

~The Weather Channel – we use this to see whether the weather suits us somewhere before heading out.
~Maps – The GPS is remarkably accurate. We have had a few funny instances for example, when it directed us into a cemetery. Considering we were in Florida, aka Heaven’s Waiting Room, we found that appropriate.
~Pandora – for those times when there is no local stations other than Rush-types and Christian music. Before anyone blasts me, there is nothing wrong with it. It’s just not our cup of tea. (did I get out of that one unscathed?)
~Shazam – for those times when we know the song, but can’t think of the artist to save our lives. this app actually “listens” to the song and give us the artist and version within seconds. It feels like magic.
~ Notepad – for keeping track of what we do, where we go, what we eat, hear, etc. Much more environmentally friendly than paper, and easier to keep up with since my phone is attached by umbilicus.
~Social Media – I’m just going to bundle Facebook, LinkedIn, Palringo, Skype and Twitter all together here. Tweetie was the one and only app I ever paid for, and at $2.99 it was a steal!
~Have2P – Yes, I know it’s a funny name, but there is nothing funny when we’re in the middle of nowhere and nature comes calling. You gals know what I mean… I see you smiling.
~Public Radio – I can look up any NPR station that broadcasts and listen to my favorite programs. Since we tend to sleep most of the day and stay up all night, I have found a great station in Hawaii that allows me to listen to Morning edition late into the afternoon.
~Offleash – We’re traveling with two very active Wheaten terriers. They are great, but sometimes their energy needs to be released in a major way. this application uses GPS to find us all the dog parks in the area. We have used it countless times – even submitted one that was missing from their list – pay it forward.
~ Stanza – Through Project Gutenberg and others, there are literally thousands of books available free to be read by anyone with access to a computer. I downloaded, for example, Curious Case of Benjamin Buttons a few days before we went to see the movie so that I would have read it in its original before seeing the Hollywood interpretation. Though Brad Pitt was great, F.Scott Fitzgerald was better.
~ AroundMe – I needed a pharmacy today. I tapped the category, and in seconds a list of pharmacies complete with directions appeared. Granted, I still got lost since I failed to look, but it was there for me.
~ TakeMetoMyCar – We were in Key West, and by the time the day was through we had no idea where we had parked. Fortunately, I’d pressed the screen before we walked away that morning, and it took us right to the car.
~TV.com I know it’s a little screen on the iPhone, but when I was stuck in Peregrine without any wifi or TV signal, I watched CSI and How I Met Your Mother in a YouTube-like format. Very cool.
~i.TV – Speaking of TV, wherever we go this app uses GPS to determine our location, and then gives us the local TV and movie listings.
~Music Recording – 4Trak and GigBaby allow Stewart to record four tracks of music so he can play lead, rhythm, bass and slide resulting in beautiful music.
It’s his own mobile recording studio.
~YouTube – We use this primarily for comedy. Every once in a while A Susan Boyle singing I Dreamed a Dream or Adam Lambert singing Mad world comes along, and instead of being out of the loop, we get to indulge over and over until the tears stop flowing. Speaking of tears flowing, there was one particular Youtube video, Ed Needs Bob that led us to collaborate with Jay Koch in developing a new acronym to describe the sort of laughter that doubles you over and makes tears stream down your face. ENB is when ROFLMAO just doesn’t do justice to our fun.

There are many, many more, but you get the general idea. On our (my!) laptop we have a TV tuner card with fits right into a slot in the side. If we happen to have access to cable, it just hooks right up to the card. If we don’t, I know the name of a good electrician (Stewart) who is quite skilled at working the antenna to get us a picture. When all that fails, Pat Bell, also known as @MickeyMouse1105, tweets me what’s happening on American Idol.

The final question regarding missing home is a bit more complex. We have three daughters and two grandsons who we miss desperately. But the reality at their stages of life (ages 29, 24 and 20) they will have about 30 minutes a week for their parents. Should we spend our time stationary in hopes they throw us a bone? We feel that home is wherever we are together. Peregrine is home, but we are each other’s “home”. We have gotten Skype, and have asked the girls to do the same so we can see them as well as hear their voices. If anyone wishes to reach us, our user name is ravenhouse18. Just give us a warning shout so I can put on my Chapstick.

We did a lot of going back to the same places we had already enjoyed in our final weeks in the Keys. Stewart and I cooked and brought in food while I was recovering, so there isn’t a lot to report other than the remarkable care he gave me, as always. There is one place in particular that is a standout, though. Hog Heaven. The food was excellent, and the live music was a real treat. They played reggae with various guest artists joining them for different numbers. the best part was they serve a full menu until 3:00 AM. As many of you know, we just get started around midnight!

Too much fun landed me in back pain hell. Fortunately, I had my iPhone to keep me company. I have gotten really fast on that thing. In fact, I actually prefer it to my laptop. It is fun to watch the auto-correct transform my thoughts into something completely different. Steve Jobs has a really good sense of humour. I am happy to report my back is healing nicely, and I’m back in the saddle, so to speak.

I would like to share the final day I had before being down for the count. Early Thursday morning – ok, it was around 10:00 am – we headed for Miami where we met Vopni (@talkative_mime) for brunch at a little place called Wagon Wheel West. great breakfast. In my opinion, breakfast is the meal most often ruined. The owner, Wally, was so excited when we told him we’d mention him in our blog, he brought T-shirts for the table!

Straight from WWW, we headed over to Whisk Gourmet. Unfortunately, we weren’t hungry, but we still managed to share a piece of the most heavenly chocolate cake I think I’ve had since my mom’s. We actually fought over the last bite! It was so nice getting to see Ryan and Alyson, my cousins. I hadn’t seen Ryan since he was about 14. Now, he’s all grown up and working for Amex. Handsome, too!

That night, Stewart and I went to see Les Miserables at the Actor’s Playhouse in Coral Gables. The playhouse is owned by Larry and Barbara Stein. Coincidentally, when I broke a tooth in March, Larry fixed it for me. He’s both a great patron of the arts and dentist. What a combination. The company included quite a few from the original Broadway production. When Valjean, played by David Michael Felty sang “Bring Him Home” there wasn’t a dry eye in the house. We were, of course, there in our flipflops, but who cares. Magic! Incidentally, another one of my cousins, Staci Schwartz, an accomplished actor, was a part of the Actor’s Playhouse until quite recently when she relocated to our nations capital.

Down in the Keys for the most part our choices for shopping are an outlet store or two, Wal-Mart (where I refuse to shop until they pay their workers a living wage), and Walgreen’s. Spending the day in Miami gave us the opportunity to stock up on much needed supplies. We (Stewart!) had broken a lamp at the home we had rented, and buying a new one seemed a better solution than reporting it.

I am at a stand still.There is so much more to write, but if I wait until I have it all written, I’ll never get this posted! So, I’m going to post this, and then get back to the more interesting aspects of our journey. Please forgive me for not being very amusing this go. Too much to say, too little wifi!

Peregrine is Great, a House is Better!

After three straight weeks in Peregrine, I definitely was ready for a little square footage. Heck, I was ready for a square foot. Granted, we were staying in this beautiful place, Fiesta Key, but the restrooms were about a city block away. When we first got there, being on the water seemed more important than proximity to the toilet. Lesson learned: choose facilities over view. So, we met this really nice couple, A.W. and Beth, who turned us on to this really cool little house on Long Key. If this journey was going to be successful, we were either going to have to add plumbing to our trailer, or rent. Obviously, renting won. Check out our digs. Here’s a picture of the balcony overlooking the canal.

There is a phenomenon here in the Keys known as “bridge fishing”. The main bridges actually include a pedestrian bridge parallel specifically for this purpose. We decided to give it a try. Most of the time was spent baiting the hook, as those fish are hungry and smart. Turn to your left, and your casting into the Gulf of Mexico. Turn around, and you cast into the Atlantic ocean. Very cool. While Stewart was busy putting the squid on my hook, a local guy steps up next to us, drops his line into the water, counted to five, then pulled in his line with FIVE FISH ATTACHED! “OMG”, I shouted. “How did you do that?” He proceeded to throw me a couple of fish, and then explained they were for bait. Darn, I thought he had just given me dinner. Anyway, they are called ballyhoo, and the line is called Sabiki, which in Japanese means “little bait fish rig” I thought he said “ceviche”, so was completely confused. I was trying to figure out if it was the vinegar that made five fish bite at once. We can’t wait to try it ourselves. Stewart bought rigs in three sizes.

Speaking of Stewart and fishing…. It is time to tell you of the latest Emma saga. Stewart decided that a little night fishing off our dock sounded like a good idea. Even better, he took Emma and Jeffrey with him. It was 11:00 PM. When I looked out the top of the deck and couldn’t see anyone, I yelled down to make sure he hadn’t fallen in. This small, tight voice replies, “I need your help”. As quickly as these old bones would allow, I scampered down the stairs to find Stewart crouching over Emma with his hand down her throat. Blood was everywhere, later to be discovered mainly from Stewart’s hand, though Emma was wearing it in her beard. When I asked what happened, it turned out instead of catching fish, Stewart caught Emma. Fortunately, his instincts are still intact in spite of his advanced years, and he tied off the weighted fishing line before she could digest the hook completely. I called the local 24 hour vet, and was told to sedate her with benadryl ’till she could be seen in the morning. After a very long night, the vet was able to remove the hook from her esophagus with minimal damage – and even gave Stewart back his hook. Now, Emma waits with baited breath for her next adventure. Sorry, I couldn’t resist.

A lot of our time during this segment of our journey has been spent relaxing and enjoying a fully-stocked kitchen. Alyson and Vopni Hauksson, my cousin/niece and her husband came down for the weekend, and Stewart made his always delicious breakfast. It was like being back at one of those casino smorgasbords. We all ate until we were comatose. Also, Vopni taught me all sorts of little tricks on my iPhone, as well as how to “borrow” movies on line. Very valuable information when the road is your home. After attending the Marathon Seafood Festival, we went to Lorelei for drinks and sunset. Someone had taken a 1964 (?) pink Cadillac, and set the shell of the car over their boat. Here is Vopni sitting next to it. Stewart tried to get him to climb in, but this is as close as he would get. As we were sitting there listening to music, the space shuttle flew overhead, and everyone there joined in one of those spontaneous moments of joy. Very cool.

Since so much of my time is spent in contemplation, I decided to share my streams of consciousness in another format. I am now on Twitter, and loving every minute of it. If you can’t find it on Twitter it doesn’t exist. It is a fascinating social network. If you haven’t looked at it, give it a try, or as we say in tweetspeak, give it a twy! I’ve added Twitter updates to the right side of the blog, plus a link to join. Stewart loves listening to me read out some of the more ludicrous postings. Truth really is stranger than fiction.

This couple we met, A.W. and Beth, as a welcome to our new digs, gave us a list of all the area Happy Hours, complete with the times and specials. It is hilarious the way some of the vacationers eat and drink their way across the Keys. We tried out a couple of the places, and they were packed. As soon as the drink specials were over, everyone cleared out like there had been a fire drill. I’m not big on finger-food, but Stewart sure is. He was all over the .10 cent peel and eat shrimp. So far, he likes the conch fritters at Sparky’s, but hands down, we both think the best key lime pie is still at Mrs. Mac’s Kitchen in Key Largo. We happened upon Mrs. Mac’s Kitchen on the way back down to Long Key hungry for dinner. Our only criteria were a full parking lot, and no “Mom’s” or “Aunt” in the name. Mrs. Mac flew under the radar with a marital
reference instead of familial. They have this delicious drink called a key lime freeze that is like milk shake. Anything that good should be illegal. Also, we had the hogfish, and it was exceptional. What an unfortunate name for such a yummy fish. We will definitely be going back there.

March 8 was International Women’s Day. In honor of the day the film, A Powerful Noise, was shown in 450 theatres nati
onwide. Afterwards, a panel discussion was held with Madeleine Albright, Nicholas Kristof, et al, addressing the issues facing women globally, and some of the things we can do to help. CARE sponsored the event. Fran Sevcik made dinner for us all, and she, Alyson and I went to the viewing, while Stewart and Ron hung out talking fishing. Personally, I like the idea of micro loans, which help people help themselves, so Stewart and I strongly support Kiva. I strongly encourage you to give them a look. As little as $25 can change an entire family’s lives. Plus, it is fun.

We’re making plans for the next installment of our odyssey. It does look, however, like my health is once again casting a grey cloud on our adventure. It looks like we are going to be headed back to New Orleans mid-April for a consult at LSU. I will keep you posted how that goes. Until then, hope you all are well, and are enjoying Spring.