Brief Bubba Update

Carpet allergy may not be the problem, according to three neighbors who had similar problems with their pooches.  Evidently, the grass here is treated with some type of chemical that a few dogs don't tolerate well.   The answer would be to put a little sweater on the dog so the grass doesn't contact their belly.   One kind neighbor gave me a lovely little black jacket for Bubba to see if it helps.  He looks ridiculous in it, so I'm not going to embarrass him by posting a photo of him all dressed up - but here is a new portrait I took the other day.  I'll check with the vet about the grass v. carpet debate.  I hope he doesn't have to wear this silly jacket all the time - the poor thing will get bullied for the way he dresses if that happens.

Bubba and Me - a Love Story

Bizcochita

I love animals.  I always have, and have had pets for all my adult life.  When I left Puerto Rico and moved to Florida, leaving Biscochita, my beloved long haired Doxie, behind broke my heart.  I left her in good hands with friends and knew it was the right thing to do but that didn't make it any easier.  She was used to being with me 24-7 and that would not be possible in Florida since I had to get a full time job.  In Vieques, she came to work with me every day and had the run of Casa Cielo, the beautiful 9 acre guest house that I managed. 

So when I retired last November, I casually commented to a neighbor with a cute little poodle named Buddy that perhaps I'd get a dog now that I'd be home to care for it.  I meant it and kept thinking about it but was busy with rehearsals, disability paperwork, doctor's appointments, and I just never took action.  Plus, my friend has been looking for exactly the right dog and I promised I'd help her with whatever dog she got.  (It's been more than a year she hasn't found one yet, but that's another story for another day.) 

"Buster" from the flyer photo.  12 lbs. of solid muscle.

Exactly three weeks ago today, Buddy's owner knocked on my door.  He had a guy with him and a flyer showing photos of two dogs who needed a home.  Both dogs were adorable but the little white Jack Russell won my heart instantly.  The dog was 6 years old, 12 lbs. and potty trained.  The friend explained that his girlfriend rescues, fosters, and then finds homes for dogs and cats. They needed to make room for more foster babies.   I made plans to go and visit the next day.  Terrylynn had 6 cats and 4 dogs in her home, one of each was hers and the others all needed homes.  When I saw the Jack Russell there was no going back.  We were meant for each other!  Only problem was that it was the chorus' performance week and I'd be out every night.  When I explained this, Terrylynn's daughter told me she is a flautist and her boyfriend a music major in keyboards and composing, so I invited them to the Verdi Requiem concert that Sunday.  Since they wouldn't take any money for the dog, I bought tickets for them and they were thrilled.  I committed to taking the little guy home the following Monday.  "Buster" as he was called, became "Bubba" which I thought befit his muscular little frame and Florida origins.

Chillin' on the blanket.

sBubba and I became fast friends and everything was going great.  He made loads of new doggy pals at my condo complex and I met more people in the last two weeks than I had in seven years here!  Dog people are generally very friendly, even if their dogs don't always play nice.  I was delighted that Bubba worked and played well with others and he quickly figured out how to trot alongside my scooter when we went out.  He was already potty trained, learned the "sit" command quickly, didn't jump on people or furniture, didn't bark unless there was a reason and was clearly a very intelligent dog.  He was also quite calm for a Jack Russell which suited me just fine. We were a perfect fit.

How cute - but his poor belly was suffering.

Only problem was on day four he started this weird habit of dragging his belly on the carpet and propelling himself around the room that way.  How brilliant I thought.  He's figured out how to rub his own belly!  As cute as this was, his poor belly was getting red and raw and I feared he'd get an infection.  He needed a vet check up anyway, so this morning we went to see Dr. Melissa.

One hundred and thirty two dollars later I learned that Bubba was healthy and had no internal parasites. He needs a really good teeth cleaning, plus distemper and Parvo shots which he'll get on his next visit.  However, that weird belly rubbing was because he was itchy and he could scratch the largest area with this maneuver; I told you he was brilliant!  But why was he itchy?  Well, ... wait for it... Bubba seems to be allergic to my wool carpeting!  His rubbing was making the allergy worse (so OK, maybe he wasn't as brilliant as I thought), but really, an allergy to wool?  Sheesh!  Of course, it's only her theory but we've excluded most other things that would cause him to scratch that much. Contact Dermatitis seems to fit.  He's on 12 days of medication to stop the itching and so far so good.  Dr. Melissa said to keep him off the carpet and since 3/4 of the condo is carpeted, this will be a challenge.

At the moment part of my living room and den is covered with a large blue Fema-type tarp.  Another area has some fleece blankets and a pillow.  He'll need to be confined to the kitchen overnight or when I'm out, but Bubba seems content to stay within the tarp/blanket  area while I'm watching TV or on the computer.  But when I get up he follows me around the house.  I can't carry him and walk without losing my balance, so I fitted the basket of my rollator walker with a piece of leftover foam board to provide a base.

Bubba on day 5 in his new home. 

Then I plop him in the basket (which he's not too sure about but he allows it - good dog), and off we go to the tiled kitchen or hallway, Bubba nervous in the basket and me trying not to trip over the tarp.  Once there I take him out of the basket and hangs with me on the tile!  I tried to get a photo of this but he freaks out when he sees the camera;  I figure he's been through enough so I backed off on the photo op.

For a rescue pet that I got for free, this will get  expensive!  But Bubba is worth it.  He is a blessing and a joy, and makes me happy every day.  I see many more years together and new synthetic burber carpeting in our future.

Catching Up

Just some bits and pieces and random thoughts since I haven't posted in a while.

 I love this quote from Marc - his blog is amazing and everyone with a chronic illness can benefit from reading Marc's take on his own disease.  He is real, brutally honest, and very very smart.  Here's a link to the Wheelchair Kamikaze's Blog.

"I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…"    Marc Stecker aka Wheelchair Kamikaze

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The Tampa CCSVI Symposium and Walk 'N Roll was a huge success.  The Alliance exceeded their goal and both the lectures and walk were very well attended - far greater than expected.  Everyone who spoke did well and we were warmly received.  The auction was wonderful with a lot of fabulous items.  I worked the auction and registration tables until it was time to speak so I missed some of the doctor's talks but I believe the CCSVI Alliance will be posting the video of the symposium.
 
Nicki Watts did an incredible job of organizing this pretty much on her own with the support of Michelle Brown (long distance from Connecticut).  Congratulations to everyone for a very successful event and thanks to all the sponsors and donors who participated.  And thank you to everyone who donated to my walk page, allowing me to far exceed my goal.  I raised $985.00 and am sending in another $15 just to even it up!  Here are the links to two photography sites who donated their services.  The photos are wonderful and capture the spirit of both days. 

Symposium Photos by Kimberly Yau Studios        Walk Photos by Lucy Perl Photography

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One week of rest before 'hell week' starts again for our Verdi Requiem performances.  We're performing with the Lynn Philharmonia in a partnership that will save us some money because two performances will be in the University's new theater which is gorgeous, and we don't need to rent space or hire an orchestra!  Their conductor, George Schram, is very well repsected and I'm excited to meet him next Monday.  We rehearse Monday through Wednesday and perform Thursday through Sunday.  Hopefully we'll all have some voice left by Sunday because this is a demanding work, but one of my very favorites to sing.  The seating arrangements may be better for me as my section is on the end, so I can sit for a lot of the performance and not stick out like a sore alto.  Wish me luck!
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I am a feature article on the CCSVI Alliance website.

I was honored to be asked to write a patient perspective for the CCSVI Alliance.   They just published it as the March feature on that section of their website.  They used a photo I sent them but it looks so large!  I thought the one I sent was smaller :)   To read my story, along with my friend Michela's companion piece, just click this link:

       Andrea's Patient Perspective

  Note:  the page can be slow to load so please have patience.  (Probably that huge photo!) 

Bocelli, Art, and Gabrielle Fauré

I've been so busy lately that I haven't had time to update this blog, so here's what's been going on.

 

Click Here to Hear the Nessun Dorma finale

The long awaited performance on Feb. 14th with Andrea Bocelli has come and gone.  It was a surreal experience for many reasons.  

•  We didn't get a real rehearsal with the orchestra or Bocelli as we did for the Christmas '09 concert.  This was because Mr. Bocelli was in NY the day before our concert for his Metropolitan Opera 'debut'.  I'm not even going to comment on that.  Click the link and read the NY Times review which speaks for itself.  Then he arrived late for the short rehearsal time we did have on the day of the concert... and we didn't go over all of the pieces.   In fact, midway through the rehearsal they added a piece of music about 2 hours before the show!  
• The conductor, Eugene Kohen, was a very nice man but a very strange conductor!  Some of his arm movements were nothing like I've ever seen.  He almost never cued our entrances and we needed the cues since we didn't have any rehearsal time.  To their credit, Orchestra Miami did a fantastic job and to our credit, we managed to not screw anything up too badly.  The videos show we sounded really good!
• The stage of course was elevated, but the chorus was in the back of the stage, elevated even more - I'm guessing we were about 50 feet above the ground.  Getting to my seat was a challenge because part of the stairs didn't have any handrails.  A nice guy from the Bocelli road crew helped me but it was a little scary. I was smack in the middle of the first row, but once in my seat all was fine.
• I'd forgotten what it was like to see 21,000 people looking at us on stage!  It was just awesome and yes, surreal.  The sound of their applause was overwhelming.

My FaceBook friend Laura came from New Orleans to see the show and she was thrilled that I got her backstage before it started.  She took some fantastic photos and videos, as did others.  The audience of course went wild for Bocelli - he has very loyal fans - but the highlight for me was hearing and meeting soprano Anna Maria Martinez.  She is just glorious and looked amazing in her red satin dress for Valentine's day.  The photos can be seen on my FB page and videos abound on YouTube.  Laura and I had fun and she stayed for another day which we spent at the flea market.

Pastel Classes  -  I signed up for this class at our local senior center and was pleasantly surprised that Daniel, our instructor, is a wonderful artist who knows how to teach.  I always said I could not draw a straight line and that is still true - but I'm learning how to draw curved lines that somehow morph into actual paintings!  I'm now in the second session of these 6 week classes and I'm amazing myself with what I'm able to do.  I can clearly see the progress from my early sessions and the challenge this week is a very difficult one.  We are using the portrait of Mary Cassatt's Girl with White Bonnet as the model for our drawing.  Drawing a face is much more involved than a landscape or still life and I didn't know where to begin, but another class member who is a 'real' artist gave me some hints and incredibly, I actually sketched in the face!  Now, it doesn't look like the girl in the Cassatt original, but it is a recognizable face of a child.  (The 'real' artist finished hers in the 2 hour class and it looked identical to Cassatt's!  I told her I want to buy it!)  When it's done, I'll post it here - but meanwhile, here's another study I did of a Van Gogh landscape.  (There's some glare on the bottom of the photo that's not on the original.)  Bottom line is I'm really enjoying the class, the other students and the teacher.  Who says you can't teach an old dog new tricks?

Gabriel Fauré wrote some beautiful music but I have to confess that other than the gorgeous Cantique de Jean Racine I'm just not a big fan of French romanticism.  The Master Chorale of South Florida is rehearsing Faure's Requiem and my plan is to rehearse and learn the piece but not sing in the performances because I think it will be too difficult for me to stand for entire performance which is what will be required.  Plus, I don't love the piece and further, our conductor has placed me in the lower alto part which for this piece means I'm actually singing the Tenor I part in the tenor register which is killing my voice - it's too damn low!   I'm not a second alto - if anything I'm a second soprano so this just feels wrong to me.  I can't sing it that low with any kind of decent tone and I don't think my one voice will be missed in the sea of 100+ so I'm opting out.  It will be fun to sit in the audience and hear what the chorus sounds like - something I rarely get to do.

But first, we have the Verdi Requiem coming up March 24th through the 27th.  I love, love, love the Verdi Requiem and am looking forward to being back at the beautiful performing arts center at Lynn University in Boca Raton. Saturday night is already sold out so if you are in town and want to see a great performance of a great masterwork, let me know and I'll be happy to invite the first 2 people who reply as my guests to the night of their choice - Miami, Fort Lauderdale or Boca!  

Next week I'll be in Tampa for the CCSVI Alliance Symposium and Walk.  See my previous post for more info.  Will report on that when I return. 


Addendum:  I finished the portrait - it needs some tweaking but basically this is it.

Tampa Symposium and Walk-N-Roll

Please click here to see my walk page and donate to this worthy cause


It's time to START NOW - March 4-5 will be an exciting weekend in Tampa for the first annual CCSVI Alliance Walk-N-Roll fundraiser.  I will be one of the speakers on March 4th and will be 'rolling' on March 5th.

Here's what's being planned:

Day 1 - Presentations by CCSVI treatment providers, Dr. Bulent Arslan, Moffitt Center,  Dr. Michael Dake, USF,  MS neurologist Dr. Stanley  Krolczyk, neurologist Dr. Mark Cascione, four patient perspectives, reception and silent auction. 

Day 2 - Walk-N-Roll (2 miles) on Saturday morning, from 8 am - 12 noon

             Food, friends and fun in the sun (get that vitamin D).

If you haven't already done so, please visit my walk page by clicking link on top of the page to read why I'm passionate about this cause.  As a fledgling organization we really need all the support we can get.  If you can't contribute but want to help, how about an in-kind donation for our auction?  Or if you have a business, why not be a sponsor?  Any support will be appreciated and used well - I promise you that.   Help us make this first event a huge success.  I'm counting on all of you.
Thanks!

New Beginnings

Dr. Salvatore Sclafani

A new year naturally brings new beginnings but January, 2011 was the most exciting January in my personal recollection.  What has me so excited is the time I spent this week at the 23rd Annual ISET in Miami Beach.  The International Symposium On Endovascular Therapy meets each year to share advances in ET, watch actual procedures, listen to expert presentations on technique and findings, network, and see the many vendor booths showing the latest tools for their profession. 
 This year I was very fortunate that all these things converged:
a) the ISET was being held  at the Fontainebleau Hotel in Miami Beach, less than an hour away; 
b) the organizers chose to showcase a number of presentations on CCSVI, inviting the leading doctors in the field to participate;  
c) the organizers graciously donated space for an information booth to the CCSVI Alliance; 
d) the Alliance asked me if I could help cover their information booth at the event!

Since ISET is not open to the public I would never have been able to have this experience without the Alliance and I am forever grateful to Sharon Richardson, President for inviting me.  It was great meeting Sharon and I immediately could see that the Alliance has the right woman for this daunting job.

Me and Dr. Dake - CCSVI Pioneer

Monday:  Woke up at 5am.  Left home at 6, got a bit lost driving to Miami Beach (only I could get confused on this straightforward trip), still arrived in time to meet Sharon and chat and the presentation began at 8am.  
Dr. Zamboni, Dr. Sclafani, Dr. Dake, Dr. Haskal, 
Dr. Machan, Dr. Benenati, Dr. Katzen and Sharon (!) were all on the podium and each made their presentations.  Over 700 people filled the room and some even sat on the floor in the back to hear about CCSVI.  It was amazing.  The presentations lasted through the morning at then broke for lunch.  I tried to take some photos but they didn't come out too well - although I did get to meet Dr. Dake when he stopped by our table later in day.

Sharon Richardson & Dr. Arslan

Sharon went off to do some video interviews with Dr. Zamboni and Dr. Haskal and I went to cover the Alliance information table.  Sharon's friend Nancy also came along to help.  We had a good number of people stop at the table to ask questions, get literature and to tell us how much they enjoyed Sharon's talk.  We had some lunch, went back to the table and then my doctor, Dr. Arslan stopped by to say hi and give me a big hug! 
By 3:30 it was quiet so I made my way home.  (Well actually since it was Monday I went to my choral rehearsal and didn't get home until 11 pm.  A very long day but amazingly I had ENERGY!  Thank you Dr. Zamboni and Dr. Arslan.)

Wednesday Sharon called to say things were quiet and she and Nancy could handle the table so I had the day off.  But Thursday, the final conference day, there was a technical panel on CCSVI and I was welcome to come.  I wasn't going to pass that up so I arrived (didn't get lost!) at 8:30 for the 9:00 session. 
Same doctors on the panel (minus Dr. Dake who had to leave early) and this time I had a great seat closer to the podium.  The mood after all the presentations was one of hope and forward movement - and new beginnings. I took photos and learned a lot;  loved Dr. Haskal's ideas and Dr. Zamboni was excellent.  

So, they're all leaving the stage and there I was!  First I got to speak with Dr. Katzen who told me to email him about my follow up Doppler!  Here - in Miami!  Then I got to talk to Sal Sclafani who was just the warmest, nicest guy ever.  Dr. Arslan came over and together we approached Dr. Zamboni and the group that was around him.  He noticed me and came over to my scooter!
  I was able to say, "Thank you for changing my life and the lives of so many of us with MS."  He held my hand and smiled that amazing smile and said "I hope you keep getting better."  Oh wow.  I moved on, as there were many waiting to talk to him.  Dr. Arslan stayed and on my way out I found myself next to Ziv Haskal.  I said to him, "I enjoyed your talk and agreed with everything you said, especially about ... " well, no need to recreate the conversation.  We spoke for about 10 minutes!   

Sharon left to catch her plane and I went down to the lobby preparing to leave when I realized I'd left my notes in the salon.  I went back to get them and on my way out (for the second time) there they all were!  Standing around, informally chatting, and I decided I had to get a better photo of Dr. Zamboni.  I took out my camera.  Dr. Arslan saw me and said, why don't you get in the photo and I'll take the picture.  I think Dr. Zamboni heard him because he motioned me over!  OMG!  I was a nervous wreck and you can see it in the photo.  I didn't get close to him and my expression was awe and shock!  Thank you Dr. Arslan!  That photo would not have happened without you.

What a wonderful way to begin the new year.  Renewed energy, CCSVI gaining more acceptance every day, doctors agreeing to collaborate and develop protocols so research can have standardized procedures, and a once in a lifetime experience for me.
My personal 'new beginnings' include exercise classes, an art class, and I'll be editing and publishing a book.  I learned a lot in 2010, and 2011 brings more to learn, more to share, and more hope for everyone.  I wish you all wonderful new beginnings.

Addendum:  After I posted this I got an email from The New World Symphony here in Miami.  (If you're not familiar with NWS, they are America's orchestral academy, founded and conducted by Michael Tilson Thomas (MTT).  After fellowships at NWS, these musicians go on to play in the best orchestras in the world.)  I won two tickets to the January 30th performance at their new concert hall designed by Frank Gehry!   A new beginning for them and a great end to an amazing January for me!