Tuesday, April 3, 2012

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!  

Friday, January 13, 2012

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: 

Thursday, January 12, 2012

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!