She's Baaack (but not staying)

I've been very remiss about posting and writing this blog so I'm just here to say that I needed a break from all this self-reflection; and I still do.   I don't want to post stuff that's negative and lately, that's what's been rattling around in my lesion filled brain. 

So, as our mothers taught us, if we don't have anything nice to say, say nothing at all.

I've been keeping busy with rehearsals for the Master Chorale performances at the end of this month.  It's going to be a wonderful concert and so far I've only missed 2 rehearsals so hopefully all will go well and I'll get to sing this time around.

Next season is our 10 year anniversary and we're doing Carmina Burana again at the Arscht Center and I don't want to miss that.  Also we're doing 6 or 8 performances of Beethoven's 9th which we'll be paid for - so that will be fun; crazy vocally but fun.   Trying to get our former conductors to come and conduct us too which will be wonderful.  After that season I think I'm done with performing.  Hopefully they'll let me still come and participate in rehearsals but I 'get it' if they won't.

One fun thing I did was participate in Eric Whitacre's Virtual Choir 3.  This is a project where singers from around the world (this time 3,746 from 73 countries) upload their individual voice part;  then they digitally collect them and make it into a choir.   I did it last year too with Eric Whitacre's song Sleep and this year's piece was more challenging.  It's called Water Night and I sang the Soprano 3 part.  (There were 16 different voicings - amazing!).   I love Whitacre's music and since he was a student of my former conductor Jo-Michael Sheibe, I feel a connection.   Master Chorale performed his Lux Arumque last year.  (He dedicated Lux Arumque to Sheibe - it's right there in the printed score!)  Anyway, here is Water Night for your listening pleasure.

 

I finally got insurance as of April 1st and even though it's horrible coverage ($2,000 annual deductible and then they pay 80% using in-network doctors only), at least I don't have to worry in case I need to be hospitalized for anything.  But for basic stuff, it's pretty much useless and it costs $376/month.  It's all I could get and it's part of the Obama Care package so I'm grateful.  With a pre-existing condition no company would insure me and thanks to President Obama, people like me can now be covered.   I'm voting for him because of this alone!


Otherwise, things are fine.  I'm just feeling very tired all the time and don't have the energy to change things.   Dealing with annoyances such as a scooter that doesn't work, (got repaired, worked for half a day and is still in for repair).  At least my back-up scooter is working.   Paid a bunch of money to get my car in safe working order.   Sold some gold jewelry that was sitting in the drawer doing nothing and got a bunch of money for it (but see car note above).  On the plus side, Bubba is fine (but not without a scary trip to the vet ER late on a Sunday night).   The SoJo group is going well.  Found 5 months of medication I thought I'd lost (put it in a "safe place", and forgot where it was!).  

My brother and his wife are planning to move to Florida and I'll be happy to have some family in the area.   Hopefully by June they'll be somewhere north of me (maybe Boca or Boynton Beach).   I'll see them April 18th while they're here looking for a condo.   So that's what's happening and I'll write again when I have something exciting to report!  

Falling, Yes I am Falling...

Wheee!  Here we go again!

Well I didn't plan to update the blog this quickly but this morning I had another battle with the MonSter that I live with.  Woke up at 5 AM to use the bathroom.  Bubba stayed asleep (good dog) and I walked to the bathroom, did what I needed to do, and started to go back to bed.  But after two steps, without warning - my left leg just collapsed.  There was a sharp pain and before I could even grab the counter I was on the floor, sitting on my butt. 

Now in that room is a sink, counter top, toilet, a metal walker-type frame with handles that I use to lean on at times, and the shower.  After I took inventory and saw I wasn't hurt, I had to try and figure out how to stand up. You'd think with all that equipment at hand it would be easy but it wasn't.  After trying various ways for about 15 minutes I was exhausted and needed to rest.  I just sat there and, surprise, in comes Bubba to see what's going on.  He was no help so I told him to back to sleep. He left and got into his bed. Good dog! He's getting used to seeing me down at his level and realizes I'm not there to play.

(Shameless excuse to insert photo of Bubba)

OK, back to the task at hand.  Scooted on my bum out to the bedroom where the floor is carpeted - maybe that would be easier.  But still didn't have enough strength to pull myself up using the bed.  (I have one of those very high beds - comfy but not good in this situation.)  Could only stay on my knees a short time which didn't help.  Whew - that took some energy so, rest time again.  What next?  Where the hell did I leave my phone?  Oh, it was in the basket of my scooter because, like a good girl, I took it with me when I walked Bubba last night.  

So I crawl out to the dining room where I parked my scooter and get the  phone.  Whoops, barely charged 'cause I left it in the basket overnight.  And damn, my door is locked.  Not even going to try and open it since the foyer is all tiled... I'm staying on the carpet.  I figure there's enough charge in the phone to call Security if I need to.  OK, what now?  Maybe I could use the scooter to help me up.  Nope, that didn't work.  Next.  Threw myself across one of the dining room chairs but still no go.  Moved another chair on the other side and... YES!  I was able to use both chairs plus the table top as supports and all my strength. I was standing!  Yay!  I sat down on one of the chairs to get my breath and here comes Bubba, ready for his morning walk!  Looked at the time and saw it was 6:15.  Wow - that took a while.  After a few minutes I was able to stand again and get to my walker.  Then I got dressed and we went for our usual 6:30 morning walk with the scooter.

I have no idea why the knee keeps doing this, but according to Dr. Zack it is not a torn tendon - to him it sounds like a torn meniscus and surgery is the only repair.  Need an MRI to be sure.  Uh, that's not going to happen until I have Medicare.  Meanwhile, I smashed up a toe in this process so that will be taped up later today.  

I'm making mental notes about how I got upright.  Next time this happens, (and it will), I won't waste energy trying other methods.  I'll just get myself over to the dining room and use those nice heavy chairs to help.  I see this as progress - I did it myself.  That means I'm still able to live independently and of course, I always have: 

Seems Like Old Times

My friends, I cannot believe that I have not posted here since last July!  I'd like to think that it's a sign that I have been sooo busy living my life that I haven't had time to write about it.  But, of course, that wouldn't be true.   While I did have a busy summer and fall, I also just got lazy.  There - I've admitted it.   I was just lazy, and maybe a little depressed too.  And I really have been busy for much of the time.  But not too busy to write so I can't use that excuse.   I've had some challenges too - a few falls resulting in a torn tendon (we think) and visits from the cutest EMS responders ever.  But that said, let me wish you all a very happy 2012 and bring you up to date on what's been going on with MS, Music and Me. 

MS -  not much has changed.  My MS slowly progresses and I now have two scooters and two walkers that are useful for different situations.  The larger scooter (Big Red) is used around the condo complex, mostly to walk Bubba and to visit nearby friends.  The smaller black one fits in the car and is used for shopping and other outings.  A large 4 wheel walker is used in my home and a lightweight 3 wheel walker fits in the back seat of the car for going into restaurants or places where I'm going to be seated most of the time.  The summer proved that my heat sensitivity has been cured since my CCSVI procedure and I am so grateful for that benefit.  But my walking is slowing disintegrating and this latest fall and torn tendon sure didn't help.  It's still healing so time will tell.  Not on any medication for MS at this time - there just isn't anything out there for progressive MS - but you guys already know that.

Music - I'm always grateful to have music in my life.  Master Chorale did not meet over the summer and I started rehearsals again in late August, but I missed too many due to illness (some MS related, some not), and as a result was unable to sing in the November concert.  I actually wasn't as disappointed as I thought I'd be.  Turns out, the performance isn't that important to me - I love the rehearsals, learning new music, and ensemble singing with this talented group of excellent musicians.  The concerts went very well and garnered excellent reviews for our new conductor's debut in South Florida.  I started rehearing again last week for the spring concert series and I'm loving the new music.  Seeing old friends again and receiving the warm welcome I got was gratifying.  Hopefully I'll make the concerts in April but if not, so be it.  

In other music news, I got very involved with the SoJo Folk group.  The Organizer (head honcho) made me his Assistant Organizer, which was fine when he was there - but then, poof!, his job started demanding that he work on Saturdays which left me to run the group.  Oops!  Not what I signed up for and last week I bowed out. I just want to show up and sing and have fun.  But now we need to look for a new venue and I'm pretty involved in that, since I don't want the group to fall apart.  So I'm actually spending quite a bit of time working on SoJo.  Hopefully once the venue search is behind us, I can go back to being a member and having fun.  The group has really evolved from a bunch of strangers into a wonderful group of friends. Some of us get together outside the SoJo meetings and we network when we hear of things that might interest the others.  One member is performing in a play and some of us will go and see his performance.  I love this diverse group and am so glad I joined them.  A little work now is worth it to keep it going.

Me - What about other stuff in my life?  Well I'm happy and grateful for every day I'm given.  Bubba continues to be a delight and a wonderful companion.  I got to visit with Zack for 4 days when he came down before starting a temporary job in the Midwest.  Now he's moved to Massachusetts for his full time job and is busy setting up his loft apartment.  He has friends in his town that he knows from high school and I'm glad he's not completely alone there.  I got a chance to see friends from NY and other friends from HS who live down here.  Spent Christmas with a Master Chorale friend and had one of the best meals ever!  I've also started studying a book called A Course In Miracles or ACIM.   It's not a religion but more of a philosophy. I'm enjoying it and while I still don't "get" a lot of it, some of it I do.  It can takes years and years but for now, I like the study.  My friend Peter just  moved here and that means we can meet for lunch more often - I'm trying to introduce him to someone I know.  If I can't get Zack married off, maybe I'll have more success with Peter!  My Hollybrook friends and I have started a "Game Night" where we get together and play things like Scrabble, Taboo, Pictionary, etc.  I also go to a group once a month to play Euchre - a card game.  And finally, art classes start again tomorrow.  I'm only taking watercolor since that's the medium I enjoy best. So I'm keeping busy and I will vow to write more often - thanks for hanging in there with me!

Social Networking at it's Best

I've been thinking recently about how much my life has changed for the better due to social networking sites, specifically Facebook and Meetup.  This is so strange to me because while I've always been very interested in computers and have used them since the early 80's (my first system stored data on a cassette tape!), I was also leery of meeting people via the computer, having heard so many horror stories.  
True, I met a long time boyfriend this way but we all know how that ended!  (If you don't know - just suffice it to say 'not well').   But this social networking thing really works... especially when you find a group that focuses on a subject that has meaning for you.

Facebook in particular brought me hundreds of new friends, many of whom I've met in person due to our mutual connection to MS and CCSVI.   In fact, I would not know anything about CCSVI had it not been for Facebook, and that is true for almost all the people I know who had the CCSVI procedure.
It allowed me to publish a book with a woman in Rhode Island who I've never met in person but has become a close friend after many phone conversations and online chats.  It allowed me to meet friends from all over the country when we traveled to Tampa a few months ago for a symposium and walk to raise money for CCSVI education/research.  And now, I've become involved with two other groups where I've met a whole new group of friends.

Meetup.com  is a site where you can find people who share your interests and also live in your area.  You gather in a public place and spend a few hours together doing whatever it is your group is involved in.   I found this by accident but figured I'd give it a try.  I joined 3 groups and waited to see where they were meeting next.  Wow - who knew I'd get so involved!  

The first group is called Ft. Lauderdale Folk Singers Sing Out Jam Out or SOJO.   What a mouthful - but it's actually just a bunch of people in the area who like to sing folk songs and get together twice a month to sing and play music together.   Right after I joined the group's organizer resigned and a new guy stepped up to take over.  He asked for help and I volunteered to be on a committee.  I ended up hosting a meeting here at my condo complex in one of the public rooms and 15 people showed up - now they want to have all the meetings here!   Each and every person who was there was a total stranger to me (and to each other) but we all left as friends.  Three hours of making music together and laughing and sharing some history brought us together quickly.  It was so amazing how compatible we all were and what a good time we had.   Everyone has already signed up for the next meeting and we're hoping for an even greater turnout.   This is social networking at it's best - used to bring folks together in real life; a tool, not as an end in itself.

The next group I joined is called South Florida Games and Gamers.   Now this group is well organized and has a lot of people who arrange events in different areas.  Since many of their meetups are pretty far north of me, I hadn't gone to any, but last night I attended a Trivia Contest in Hollywood, about 15 minutes from my home.

   It was basically just a bunch of people who formed a team to participate in a trivia contest that is held in a local watering hole every Wednesday.  The meetup group was just one of many teams that were there.  I love playing trivia so I thought I go see what it was about.  

But here's the amazing part:  the day before the meetup, one of the members who lives near me in Pembroke Pines sent me an email and offered to drive me to the meeting!  He didn't know me and wrote a very sincere email, saying he hoped I wouldn't take his offer the wrong way, but he'd noticed that I was new to the group and that I also belonged to another meetup group that he also had joined.  He sent me his phone number so I called to get a feel for who he was.   Now maybe it was foolish of me to get into a car with a perfect stranger, but I trusted my old HR instincts and was proven correct:  Alan was a perfect gentleman, sweet and helpful, and when he heard that I had MS was really happy he had offered the ride since it's hard to park in that area - this way he said he could drop me off right at the bar and then he'd park the car.  I mean - a total stranger reached out to help me get to this meeting, not even knowing that I had difficulty ambulating.   And when I got to the place, the 5 other people from the group were just as nice!  People who enjoy playing trivia games are generally bright - and this group was smart, funny and fun.   I fit right in and they treated me as if I'd been there for years!   Made 3 new friends and I know I'll be seeing a lot more of them.  Incredible!  Social networking again bringing people together.

Today I'm going to Boca to meet two women I went to High School with!  We reconnected last year through Facebook and have become friends anew.  I got involved arranging a reunion for graduates of Forest Hills High School now living in South Florida and we'll be meeting with the banquet manager to choose the menu for this September reunion.  Over 30 people have signed up on Facebook to attend this dinner~again, social networking at it's best, reuniting old friends and meeting new ones.  

So while many people lament the trend of people sitting on their computers all day connecting with strangers they'll likely never meet, I propose that you can do more and use the social networking sites to get yourself out in the world and meet new people and do new things.   Give it a try - you may just surprise yourself and gain some new friends in the process. 

Art Class Updates

I've really been enjoying my art classes and I hope my Facebook friends have enjoyed seeing my classwork.  For those not on Facebook, I thought I'd put some of my work here for you to see.  I'm very open to constructive criticism since I'm just learning so feel free to tell me what you think and why.  Here are some samples:

 Drawing class - Lebron James of the Miami Heat.

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 Watercolor - Farmhouse and Lighthouse
This was an exercise in shadow.  Not real happy with it but it was one of my first watercolors.

 Koi Pond - Watercolor - Free exercise

This was done by wetting the paper and pouring color on, then letting them run in a controlled fashion.  Final details like eyes were added with a brush.

This watercolor was just to learn how to properly apply a smooth wash.  I didn't do a good job here - there are streaks within the colors but this is how we learn.

 Watercolor Collage - This watercolor started out badly but here's what I ended up doing:  The first time my background came out all muddy and yucky (that's a technical term).  But the Flower and Butterfly came out OK - so I took another piece of paper - just plain sketch paper not meant for watercolor - and put a purple/pink wash on it.  Then I carefully cut out the parts of the other painting and pasted them all together on a larger piece of watercolor paper.  Voila - a collage.

 This is a watercolor exercise from a book I got out of the library.  It is supposed to be to demonstrate transparency of watercolor and glazing.  I got it right with the small yellow circle over the blue circle to make it green where they intersect.  The blue and red intersect to make purple (doesn't show up well here but it does).   But the orange over green didn't work - make too many passes.  Glazing is just one pass with the color.

 Winter Beach-Montauk   Watercolor   This is Zack and his friend Cortney at the beach.  Taken from a photograph.   Courtney wants it for her apartment so I'm sending it to her.

 Rain in the Forecast - Watercolor
 This is an exercise in painting pattern - it's from the same book as the circles.  I had fun doing it and it looks much better in person - you can see much more detail than the photograph shows.  It was suggested to me to make notes cards from this.  I may take a section and do that.  I wasn't happy with upper right corner so I'll leave that out.

 Boats in the fog.   Watercolor.   This was one of my first watercolors done in class.  It's all done with one color (phalo blue) and the different values are done by the amount of water used.   Again, the photograph doesn't show the detail such as the tree trunks or texture of the dock.

 Yellow Butterfly - Pastel
This was my last pastel class for the year.

It was taken from a photograph on an old calendar I had and gave to the instructor.  He assigned different butterfly pictures to each student. 

 Deconstructed Flower and Vase - Watercolor

This also was an exercise in free expression.  We wet the paper, poured on three colors of paint and let the paint do it's thing.   We could not use brushes but could use our fingers.   Mine was actually turned upside down  (purple flower was at the bottom).  When I started turning the paper around I was able to see a flower but the yellow center was not attached.  Then I saw where a vase could be so I drew that with my pinky.  I kind of like this even though it's weird.

 This is just a detail from the butterfly collage picture - taken when it still had an messed up background.

 Ready for a fight - Pastel

This pastel piece is one of the ones currently in an exhibition at the center where I take lessons.    When I get it back it's going to my friend Barbara in Tampa.  Her husband's nickname is Rooster.

 This is my first attempt at a charcoal drawing.  I didn't really enjoy working with charcoal - way too messy for me and very hard to make corrections.  I'm still at a stage where I NEED to make corrections!

 Silverware - Watercolor.  This was successful in that I was able to capture the shine of a spoon and the cast shadow was done correctly - but the drawing itself isn't good.  Spoon is too fat and the fork is too bulky and not very elegant.  So I give myself B+ for the painting and C for the drawing.

 This is my latest watercolor and I'm sorry that the photograph isn't better because the color is great in this.  It was a study in elongated form and I was happy with the way the vase came out - less happy with the flower but then, flowers are not really my thing.

Well that's it for now - hope you enjoyed seeing some of what I've been up to.  You can see more of my work in some earlier posts and even more on Facebook.   TTFN

Our Book Has Been Published - Finally!

The gadget on the right is a 19 page sample of our book, A Year of Hope.  If you're reading my blog, then you are most likely aware that my friend Sandra Forbes and I have been working on this for a long time.  We are very proud of the result and the profits from the book are all going to the CCSVI Alliance and to the BNAC CCSVI Research Project.  Sandra and I will not profit from this work - we did it to honor and show respect to the CCSVI pioneers - patients and doctors - who took a leap of faith in the hope of alleviating suffering.

I hope you'll buy a copy and support this cause.  It was created with love and joy and I think it will make you smile... and who couldn't use a smile these days?  Enjoy!

Bubbas Big Adventure

This morning started out just fine.  Woke up early, glanced at the clock and went back to sleep.  Bubba was out like a light and didn't stir.  At 6:30 am I decided to get up and once I was out of bed, Bubba was in the kitchen right behind me, as usual.  I got his leash on him and headed out the door for our first walk of the day.  He got on board the scooter which is his new trick (I couldn't have taught him that if I tried) and we rode downstairs.

Bubba was fine, walked alongside the scooter and did all his business so we headed back to the house.  The condo powers-that-be decided at that moment to turn on the sprinklers full blast and the sudden shower frightened Bubba for a minute, but he recovered quickly when he spied the ducks.

Now Bubba is a terrier so it's his nature to chase anything that moves.  He goes after squirrels, cats, and especially the ugly Muscovy ducks that inhabit Hollybrook.  Some people love them and some hate them.  I'm in the second category.  They poop everywhere and we are forever cleaning up after them.  A few neighbors throw bread out for them which we are not supposed to do and of course, this attracts them to our building.

Behind the building is a lake which is surrounded by a golf course with steep hills and deep valleys.  The lake is a natural lake and is about a foot lower than the grass, due to the golf course built around it.

So Bubba spied the ducks and took off like a bat out of hell.  He always chases them but today for some reason the leash didn't halt him and he was able to slip out of it.  And now the fun begins.  Here's the scene:  me on my scooter, yelling Bubba! Come!  Bubba!  No!  Bubba!  Sit!  all to no avail.  The ducks scattering and finally flying off and landing in the safety of the lake.   Bubba barking at the top of his lungs, running around the edge of the lake, below the grass where I can't get to him.  My scooter goes on grass but grass and hills together - not so much.  It kept cutting off and I had to stop, remove the key, press the circuit breaker, and try again.  So I had to worry about the scooter, as well as Bubba, and the condo commandos complaining about all the barking at 7:00 AM.

I thought I'd just stay there with eyes on him until he got tired of this game or the ducks flew away - but to my shock Bubba jumped in the lake!  The muddy, dirty, lake!  I had no idea if he could swim or not so my heart was in my mouth but he paddled about half way out, barking all the while, until he turned around and scrambled on the shore.  My little white dog was now black.  I was so glad he was out of the water but then, he tried again - plop - there he was back in the lake.  In and out - this went on for about half and hour.  Why wasn't anyone coming out to see what all the barking was about?  Why didn't anyone call security?  Where are the condo commandos when you need them?  Why are these damn ducks even here?  Muscovy ducks are bred for food - just look at this link:

Click here to order some yummy duck meat!

Finally, finally, a man comes out of his back door and waves at me... really?  Waving?   OK, he was old but anyone could see I was freaking out.  I scooted over to him and asked if he could call security to help me.  He went in the house and came back with his grandson who was about 12 or 13 and spoke English (I later found out the man spoke Spanish and I would have asked him in Spanish had I known that, but as I said, I was freaking out).  The grandson, bless him, took my leash and walked down to the lake shore and tried to get the leash around Bubba's head.  But the darn dog was slippery from being wet and muddy and now the kid was getting dirty too!  He finally got it done and dragged Bubba up the rise and handed me the leash.  The poor kid had to go change clothes to get to school!  I thanked them profusely and then got the hell out of Dodge before Bubba could start chasing the ducks again.

When I got to my front door, a new problem presented itself.  How to get him in the house and into the bathroom shower without destroying my beige carpet or my clothes.  I decided the clothes could be washed so I picked Bubba up and we quickly, (well as quickly as I walk), went into the bathroom and I threw him in the shower.  Then I disrobed and joined him. Bubba likes to get bathed or showered so that's lucky for me.  We got nice and clean which took a while, and then I dried him off best I could and kept him in the bathroom while I got dressed and proceeded to gather up the towels and dirty clothes for the laundry.

                                         

It was quite a morning - and Bubba had no idea what he'd put me through.  He came out of the bathroom happy as a clam, tail wagging, and calmly went to eat his breakfast.  I was exhausted and collapsed on the couch.  Just another day in paradise!