Moments of Peace Part 9

TGIF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hmm.  Am I happy it’s Friday or what?  What a week!  Welcome to my new followers.  Thank you for taking this journey with me.  I am very thankful for my Moments of Peace because they have really helped me get through a very challenging week.  It’s nice to have moments that remind me to BREATHE.

06/15/12 My view on my walk in West LA today. PINK!

06/15/12 My view on my walk in West LA today. HELLO rays of sun!

06/15/12 This is a wonderful wedding quilt my Mommy-In-Law made that we FINALLY put on our bed. It’s wonderful! One day we’ll get rid of our ’80s furniture…

06/16/12 My view on my walk in West LA as day turns to night. MAGENTA!

06/16/12 My view on my walk in West LA as night arrives. Something about the way the lamp post looks against the tree really caught my eye.

06/16/12 It’s always an honor to see Corey perform Improv on the stage with The Magic Meathands. I feel very at peace when I see him up there in his element. I believe he was saying, “They’re eating our cake of doom!”.

06/17/12 My view from the sun deck as night arrives. I was fascinated by the glow in the night sky.

06/17/12 My view from the sun deck as night arrives. And again, more of that glow.

06/18/12 A lovely lady gave me this beautiful purple gift from her garden and I’m happy to say it’s still alive!!! Thank you!!!

06/18/12 My view from the sun deck as day turns to night. I am such a sucker for cloud views in the sky. ‘Tis the season for moody skies.

06/18/12 My view from the sun deck as day turns to night.  More moody skies.  This sun streak appeared in the clouds as I arrived on the sun deck and then quickly went away.  Such a gift.  And I don’t think I noticed that bird flying in the sky till I posted this picture here.  Nice!

06/19/12 My view from the sun deck as day turns to night. You can see sunny skies on the horizon. Gotta love when the marine layer comes in and helps to cool it down and just for me. I just know it!

06/19/12 My view from the sun deck as day turns to night. Hints of blue sky here and there.

06/20/12 My view from the sun deck as day turns to night. One of those lovely glowing sunsets.

06/20/12 My view from the sun deck as day turns to night. The sun looks so intense here.

06/21/12 My view on my walk in West LA as day turns to night. My favorite: clouds and sky.

06/21/12 My view on my walk in West LA as day turns to night. The sky was sooooo blue. It was a beautiful night–mainly because I got out for the first time in days!

 

Alrighty!  I hope you all enjoyed my peaceful moments.  I know I did!!!  Have a wonderfully peaceful weekend!

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Nurture Time

Gotta keep it simple. My body has been dealing with some MS/lupus symptoms that have been kicking my butt a bit since last Sunday. Sure I can rest my body but only when I can rest my mind do I really start to feel better. All must be in sync. I guess I could call it acceptance. It sure is hard to ride these waves.

Nurture Time is in order…

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It’s An ’80s Kind of Day Part 10!

10 whole lists of ’80s and they just keep on comin’!

I’m relieved that today is ’80s day because I need some fun, laughs and rest for my arms.  They are feeling very tight today (and for that reason the list will be a bit shorter again).  Hmmm….and on the first day of summer.  A coincidence when it comes to multiple sclerosis, lupus, heat and the sun?  I think not.

Sooooo, what can I find to distract me from my symptomatic woes?:

 

1. Cruel Summer By: Bananarama

And so to start off the summer right, how about a summer-themed song?  I sure hope the summer isn’t cruel to me (when it comes to my MS and lupus).  And oh my goodness did I love Bananarama back in the day?  Listening to them still gets me going a bit.  Oh yeah.  Their dancing is oh so cool as they walk together.  I gotta admit–I wanted to walk down the street the same way with some gal pals of mine back in the day (and now too) just like they are and they aren’t the first ones to do that strut either.  Did I just see a gas price of $1.48???  Wow, this really is old huh?  Do you think they had as much fun as they look like they’re having?  It’s true.  It was really hard to do any physical work outside in the heat with such big hair.  Wow.  Lucky Mack Truck driver huh?  Bet he thinks he’s gonna get lucky.  Yep.  That’s the Empire State Building in case we forgot.  How many shots of that do we have to see?

 

2. Ghostbusters By: Ray Parker Jr.

Thanks to a friend online for bringing up this song/movie the other day and saying that she always thought when he sings, “Bustin’ makes me feel good” she thought he said, “Boston makes me feel good” because that’s what I thought too and I haven’t been able to stop chuckling about it ever since.   Fun times!  How could you forget such silliness EVER?!  Ha ha ha!  Hilarious special effects!  Love the people that pop up out of nowhere to yell “Ghostbusters!”.  Tee hee.  Is he supposed to be a ghost?  Get it?!  Love seeing the clips from the movie.  Makes me want to see it again.  It’s been forever.  OK.  Why does he feel more like a stalker than a ghost?  I’m sensing an overall ’80s theme here in my lists of lots of stalkers.  What the heck?  I can’t stop cracking up over this.  Too hokey!  I just have to wonder, is he afraid of ghosts?  I just can’t figure it out.  (Corey–is that Carly Simon in there?–What the?)…So if we don’t know who to call about ghosts then I think we have a problem at this point.

 

3. She Blinded Me With Science By: Thomas Dolby

Such a unique song.  Awesome.  Had no idea the video had a silent movie feel to it.  Nice.  Oh sure.  She blinded him with science of the “showing some leg kind”.  Funny.  She’s quite the vixen.  I still love to go around and say in the high pitched voice, “Blinded me with science”!  It’s fun.  You should try it.  Oh the randomness is too entertaining.  Loving this!  I tell ya.  It’s pure blasphemy and trouble to be wooed by a woman.  We are trouble.  Oh and I love his eye makeup and glasses.  She’s the violin.  Nice.  Very creative.  Worth the watch for sure!  The doctor gets his “come-uppance!”  I love it!

 

And thank you to the ’80s for more distracting fun!  My hands and arms are now yelling at me.  Time to rest them!

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Victory: 2 Weeks Without Doctor Appointments!

FREEDOM!

That’s kinda what it feels like.  The only other time in the past 2 years that I have gone 2 weeks in a row without doctor appointments, I was on a trip/vacation back east to visit family and friends and I was still DOING something.  This is 2 WHOLE WEEKS WITHOUT A SINGLE DOCTOR APPOINTMENT OF ANY KIND!

Not kidding.  I think there have been a total of 4 weeks during this 2 year period when I didn’t have an appointment and these weeks were not in a row.  They were scheduled free single weeks here and there.  I had to make it a point not to have an appointment and to schedule it that way.

CRAZY!

Yeah that’s what the 2 years have been since right before my lupus diagnosis.  I’m grateful to have such wonderfully proactive doctors (including a Primary, numerous specialists and those in eastern medicine) because they have REALLY REALLY helped me get better.  They have been on me and I have been on them.  We have worked as a team.  We have done the work.  And there’s still more work to do.  The best part–it is working.

BUT RIGHT NOW–

I’m free!  I scheduled it that way of course.  And to be honest, I really don’t know what to do with myself.  I feel like there’s something I HAVE TO BE DOING.  I don’t know how to just BE.  It was my idea (ha ha ha–me and my fantasies) that I would still be on “IT” all and get a bunch of stuff taken care of.  There’s been a lot of medical business that has been left hanging.  There’s been a lot that’s had to be put aside so I could focus on these doctor appointments.  There are things in my personal life to take care of and do.  There’s a bunch of people I want to be in contact with–you know, friends and people I actually LIKE talking to.

AND YET…of course that’s not really happening according to MY PLAN.

It’s like my mind crashed when I finally realized I was a bit more free.  It couldn’t “DO” anything else.  It couldn’t handle making a call to order a new prescription for a medication and I dragged myself the entire way (this is usually one of the easier procedures for me).  IT WANTED NOTHING TO DO WITH ANYTHING EVEN REMOTELY RELATED TO DOCTORS.

SOOOO…things are a bit different than I’ve anticipated.  Go figure.

I’m recovering from my 2 years of very active recovery mode.  I’m sleeping more.  That’s a MIRACLE.  Trying to give myself credit for that.  I’m resting more and even RELAXING at times.  I’m learning how to take care of me.  I’m learning how to be with just me.  I’m learning to ACCEPT me (why is that so hard?).  I’m learning how to not have anything that ABSOLUTELY NEEDS TO BE DONE.  I’m committing to things like a daily guided imagery for sleep, eating salads every day, walking every day, resting more, adding more creative activities (this Blog for one), being gentle with me, etc.  That’s A LOT of work and it takes up a lot of time.

I’m back to the old doctor grind in July but for now, IN JUNE, I will do my best to stay in the moment and be present to my world free of doctors.  It’s really very lovely and peaceful.  The word NURTURING comes to mind.

AND QUIET.

I could get used to this…

 

 

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Stream of Nahleen-ness

*Today is Monday.  Yippy Skippy.

*I wish I felt better.

*I want MS and lupus to leave me alone.

*Cleo’s cute.

*I like Corey.

*Sleep seems to help me mentally and physically these days.

*Why is it that any hope and positivity I seem to have seems to either go away or be masked by worsened physical symptoms and discomfort?  Why do these “negative” thoughts have so much power?  Why can’t my hope be more powerful?  What are “negative” thoughts?  What makes them “negative”?  Why am I obsessing over “negative” thoughts?  What about hope?  See there I go again!

*I’m glad we took out the wedding quilt my Mommy-in-law made and are using it.  It’s comfy and it feels like she’s hugging me.  My Cleo Kitty really likes it today and it’s her new favorite place.

*I think I like the new Norah Jones CD.  I feel conflicted.  I can’t make up my mind.  I like the music.  I like her.  I can’t seem to put them together for some reason.

*On the music note, I am now a BIG fan of Gotye.  Have you all listened to his music?  His music video for “Somebody I Used To Know” blows my mind.  You gotta check it out if you haven’t already.

*I wish I could be as creative as the Gotye music video I posted above.  On that note, what am I waiting for?  What holds me back?

*I’d like to get out of my way more and be more of “me”.

*WHO AM I?

*Why am I me?

*This Blog makes me feel like I need to get a life.

*Thank goodness for AC.  Helps me even out my temperature.

*’Tis the season for me to start to take on the weather as my nemesis as if it is out to get me.  Like it is trying to make me suffer with the heat.  Like it knows and cares about me enough to single me out and take me on and make me feel worse with MS heat fatigue.  As if it’s sunnier on purpose because my lupus gets worse.  As if I’m that important.

*It would be nice to control the weather.  I have a thermostat to control the AC and the heat a bit.  Why not the weather as a whole?  Again, if only I was that important.  EGO!

*Seriously though, the weather makes me angry when it affects my symptoms and makes me feel worse.  The fatigue, aches and stiffness are not fun.  And it plays with my head.  Or I play with my mind is more like it.  My symptoms start acting up and then I think “Oh no!  Something’s wrong.  I’m getting worse!” and then I wait it out, I put on the AC more, I go into darkness away from the sun, I exercise, I distract myself with something I like to do and get even a little bit out of my head and then I’m like, “Oh.  It was the sun and heat”. I especially notice it when the cooler seasons come rolling on in and it occurs to me that it REALLY was the sun and the heat.

*Still, though.  It sucks big time.  The weather affects me so much!  Stupid weather!

*If there’s an event going on outside I probably won’t be able to go because the sun affects me so much and then the heat along with it.  I hate missing things.  I hate being left out.  I like being social.  I feel like I’m going to lose all my friends and family because I couldn’t be a part of whatever it is.  Yet every time I don’t go and push it on my body too much I do end up thanking myself in the end and usually physically feel better.

*Stupid MS and lupus!  Go away!

*So I’ve found for the first time ever in dealing with my chronic illnesses that first of all I can sleep better and sleep more.  That’s already amazing.  And now I’m finding that getting more sleep lessens the pain I’m feeling and of course the fatigue.  Also amazing.  Sooooo, I’m trying to get over my ego and my stubbornness and let myself sleep more.  I have not ever been a really good sleeper so I have years and years of sleep catching up to do.  It really okay just to sleep.

*Speaking of that, will I ever catch up with me?

*I feel like there aren’t enough TV shows and fictional books out there about a character with a quiet/invisible chronic illness such as MS or lupus and there needs to be more.  Sure there are those really visual illnesses such as AIDS and cancer and not to belittle those but what about the OTHER illnesses that no one understands (even those with them)?  What about the every day lives of just trying to get up?  Just trying to take a shower?  Just trying to eat?  Just trying to get though a day, an hour a moment?  Is this my next calling?  Should I develop this idea?  Would anyone pay attention?

*Do I even have the energy to write a whole book?  To produce a whole TV show?  These are things I want to do still and yet I don’t know how I would have the stamina to do them.  Perhaps I need to break them up into smaller pieces and do one thing at a time.  But I have limitations and things will probably go slower than with someone who’s healthy. Then again so what?

*I’M SO TIRED OF LIMITATIONS!

*I’m so tired of all the self care I need to do for me, of all the time it takes up.

*Then again: I’M SO GRATEFUL for self care and to be doing these things for me and to be feeling better.  I’m so happy to just look up at a sky and to keep it more simple and to love my Cleo Kitty and to laugh and giggle and to just be.

*I want to be a smurf.  They are who they are and they’re given names for their personality.  As if it’s that easy.  But why can’t it be that easy?  I’d be little and I’d be blue and I’d go get into trouble and Papa Smurf would ALWAYS save me.  How cool would that be?  And I’d go around singing:

“LA LA LA LA LA LA LALA LA LALA LA LA!”

 

****DEDICATED TO: My cousin Brian Knight who passed on too quickly 6 years ago due to yucky cancer.  He was quite the talented writer and would send his friends and family frequent Random Thoughts emails about everything from his health struggles to baseball.  His insights were funny and profound.  Thank you Brian.  You are quite an inspiration to me.  I miss you.

 

 

 

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Moments of Peace Part 8

FRIDAY FRIDAY FRIDAY!!  YEAH BABY!

Struggling to get back into the swing of things and yet do it a different way–in a more self-caring and healthy manner.  Posting my Moments of Peace does help.  Here we go!

06/08/12 My view at LAX. I had just dropped off Corey at the airport and I was sad. Feeling the breeze and the sunlight as the palm trees blew helped.

06/08/12 My view at LAX. What no planes? Pretty cool huh? You never know what you’re gonna see wherever you are. That’s the best part.

**Last Friday, after I dropped off Corey at LAX I found myself doing some retail therapy and managed to have some luck finding clothes which is amazing!  And that evening I found myself at The Getty Center.  For those of you who don’t know what that is, it’s this really beautiful place with art museums and gardens and what I love about it is all the nature, the quiet and the idea that I can walk around there and not need to go into any building and just enjoy the scenery.  On a really clear day you can see the spread of the LA area for miles and sometimes the ocean really sparkles off in the distance.  I love it!  I haven’t been able to go for awhile because I have such a hard time in the sun with my lupus (and my MS) and they are usually only open during the day.  If theyf were open at night I’d be there much much more.  Here a few Moments of Peace from that experience:

06/08/12 My view on the tram on the way to The Getty Center as day turns to night.

06/08/12 My view facing The Getty after just arriving as day turns to night.

06/08/12 My view at The Getty as day turns to night.

06/08/12 My view from The Getty as day turns to night.  Quite a cloudy night.

06/08/12 Hey! That’s me at The Getty!

06/08/12 My view of the gardens at The Getty Center as day turns to night.

06/08/12 I loved these flowers at The Getty!

06/08/12 My view from The Getty as night arrives. Very low clouds.

06/08/12 My view from The Getty as night arrives. The best part about this is seeing that almost solid line of lights going diagonally across the picture, knowing that’s the freeway traffic and being sooooo happy I’m not in it.

06/08/12 My view at The Getty in the same place as when I started but at night. So neat.

**And now onto the rest of the week:

06/09/12 My view in West LA as evening arrives.

06/09/12 My view in West LA as evening arrives.

06/09/12 My view in West LA as night arrives.

06/10/12 My view in West LA as day turns to night.

06/10/12 My view in Westchester, CA as day turns to night.

06/11/12 My view from the sun deck as night arrives. It was a very clear night. Those lights far off in the distance are Hollywood, I believe.

06/11/12 My view from the sun deck as night arrives. I love twinkling city lights!

06/12/12 My view at LAX as night arrives. I was there to pick up Corey and grabbed this before hurrying across the street in time for the light.

06/13/12 My view from the sun deck as day turns to night. That white ball above the glow is the sun. I love when I can get views like this.

06/13/12 My view from the sun deck as day turns to night. Another view that I am in awe of.

06/14/12 My view in West LA as day turns to night. There were some pinks in there.

It always feels good to post these and share them!  I hope you liked them.  Do you have any Moments of Peace you’d like to share?  I’d love to see them!!!

HAVE AN AWESOME AND PEACEFUL WEEKEND ALL!

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It’s An ’80s Kind of Day Part 9

Yay!  Time for some ’80s Flashback Fun!  Gonna go short this week and post 2 that I’ve thought of…So let’s see:

 

1. Hello By: Lionel Richie

Oh Lionel…can we say stalker??????  Funny, when I was a young gal I didn’t realize how creepy he is in this as an acting teacher (what the?) and thought it was such a heartfelt sincere song.  He truly loved this blind gal.  How sweet.  Except…if you keep watching you’ll see he gets a little too into it and becomes quite the stalker.  Scary!  And what is with him starting to sing during their acting in the class?  Rude!  And is she the most artistic soul ever or what?  Acting, flute playing, sculptur(ist?), dancer, …And how is it that she can’t hear him singing right to her and at her?  WORST PART: When he calls her, pauses and then sings “HELLO” to her, continues singing and then hangs up.  Too much!  But then we find out she’s been kinda stalking him too with her sculpture of him???  WHAT’S HAPPENING??

 

2. Straight Up By: Paula Abdul

Who knew that Janet Jackson’s choreographer would become a singing sensation herself?!  Such a catchy song.  I think it was to the point.  Are you gonna love me forever or am I caught in a hit and run?  So now we’re in a car crash?  Actually, as a pre-teen I thought this was a pretty darn cool song and it helped me have a voice with these boys who were just trouble.  Wow, look at that tapping.  She’s quite the dancer.  No doubt about it.  And when you heard it over and over and over you really couldn’t get it out of your head even if you wanted to.  Kinda cool black and white design to the whole thing.  She did seem kinda tough at the time.  “Oh Oh Oh”…  Can’t help it.  I’m still beboppin’ to this song.

 

And there ya have it!  Hope you got a chance to get a little ’80s break today and had some fun!!

 

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Well We Did It!

Cleo Kitty and I made it through 4 days without Corey!

On Friday afternoon, I dropped off Corey at LAX so he could fly back to be with his family for his nephew’s graduation.  It was a very bittersweet experience for me not to go and be a part of it.  I didn’t want to see him go because I kinda like having him around (you know–kinda) and yet I was so happy for him that he could go and participate in a family event and that Cleo and I were well enough to deal with life without him for a bit.

With Cleo Kitty’s cancer diagnosis in December 2011 and my dealing with lupus and multiple sclerosis, there is just no knowing what the right decision is for anything and if/when things could go horribly wrong.  I have grown used to Corey being around and to his help in our little family unit.  To have that part of us leave was scary.  What if something went wrong?  What if I came down with a flare up?  What if Cleo suddenly got really sick?  Then what?

Well we’d deal.  We’d get through it somehow.  It may feel like I’ve been alone these past 4 days but the truth is, Cleo Kitty and I take very good care of each other and I have a very important support system out here in LA who can help me if something comes up.  We’d take it one moment at a time.

And then the idea of me not going because I was making a healthy decision not to push myself too far on what was going to be a whirlwind trip was so very hard for me.  It brought back my grieving about having MS and lupus.  It reminded me that I have limitations and there are some things I just can’t do…at least right now.  I really struggled with that.  Sure I could’ve gone…and risked feeling absolutely awful during and afterwards but I didn’t like that idea at all.  I miss my family.  I love my family.  I hate not being able to see my family more.  I can’t stand that we’re on opposite coasts…BUT I want to feel at least okay when I see them.  I don’t want to feel even more tired because I was so stubborn that I just had to go.  Yuck.

So you know what?  Cleo and I got through.  Seems like Corey did too.  He’s on the flight home to us right now as I write this.  I was able to take some time for me and to even relax.  I don’t think I would’ve been relaxing on the trip.  And I can almost bet I feel better physically now than I would’ve had I pushed myself not to miss anything and to go…to act like I can live life the way I think a “normal” person lives…as if I know.

I’ve learned yet again that it is OK to make decisions that are healthy for me and to take care of me.  I am the one who has to live the closest to me.  I deserve to feel better.  And you know what?  Cleo and I are doing pretty darn okay.

And we’ll be doing even better when we have Corey back in our lives tonight.  We kinda like him.  You know…KINDA.

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PAUSE…AGAIN

I’m so frustrated! I feel crappy again today!

I want to feel better enough to be able to do more. It is so hard to have plans and keep them! I had plans today and yet again I had to pull out of them. I’m soooo tired of doing that.

I wish multiple sclerosis and lupus would go away and leave me alone!

I’m relieved to say that I don’t fight and push through things just to be able to DO them as much as I used to.

It might be healthier for me to wait and rest it out BUT it just means I have to

PAUSE…AGAIN…

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It’s An ’80s Kind of Day Part 8

And I’m back with more fun ’80s memories!!!!  I find this time of week to be the most fun for me.  Yay ’80s!

1. Stand By: R.E.M.

Oh this is a fun one!  Middle School dances come to mind.  I had to make sure to get this dance right.  I had no idea that there might be meaning to this song.  I just thought we had to stand and be-bop around and for some reason it was really easy to mess up one of the moves.  This was their first hit right?  Funny to think that this is their song since so many of their songs after this one were so much deeper.  OK watching this for the first time in forever I realize there are different groups of 4 people dancing.  What the??  I had no idea.  Shows you how observant I was.  Ha!

 

2. Jump (For My Love) By: Pointer Sisters

And the memories keep on comin’ today.  This song will probably forever be stuck in my head because we had to jump rope in elementary school Phys. Ed. class and the teacher was BIG BIG BIG into this song and she would BLAST it in the gym.  She thought it was just a perfect song to get us jumping–and she was really weird.  Holy moly she pushed jumping rope AND THIS SONG on us!  I may have to see a hypnotherapist if I ever want to forget this song.  Seriously.  Watching this I just gotta love the “sexy” looks these ladies think they’re giving the camera.  OK these ladies are cracking me up with their jigs.  I think the middle singer sister is gonna pull her dress all the way up for goodness sakes.

 

3. Summer of ’69 By: Bryan Adams

Gotta love Bryan Adams!  I know my sister did.  My first memory of this song is that I was really young when I first heard this song and I was able to do the math and figure out he couldn’t be having this memory of the Summer of ’69 because he wasn’t old enough–looking it up now, turns out he would’ve been 10.  I sure thought I was smart.  You know watching this makes me think it’s best for him not to act so I think it was a good idea to just keep singing.  He sure was a trouble maker back then huh?  I’m sure he’d like to think so.  Kinda reminds me of the bad boys in my life back in the day…And what is with the end scene?  THE “girl” picks the lamest jerk EVER to be with??

 

4. Mercedes Boy By: Pebbles

I know.  WHO?  She had maybe 2 hits and for a very brief time.  Don’t mind the first part of this video with the other voices introducing it.  It’s the only one I could find.  And the old memories just keep on coming for me today with this song.  I was a part of a group of gals in a 5th Grade Lip Sync.  I mean, I was cool.  And this was the song we sang.  We were so rad.  I think 5th Grade was my favorite year in school.  OK so from these images we see a woman stalker and a guy who likes to dance on his own in front of a camera and outside against a wall of a building BUT we never see them in the same shot until right at the end…Convincing…Sure…Hilarious!  The camera has to give her tons of head room just to fit her big hair!

 

5. Addicted To Love By: Robert Palmer

The first time I ever saw him sing I was like, “What the heck is with this guy?  He thinks he’s so cool and yet he’s wearing a business suit when he sings and the ladies in the background are SO BORING”…BUT he sure did make a style signature for himself and I admit, this song is one of the most catchy songs EVER!  Watching him now I’m struck by how much he has no personality on the stage.  Wow.  Somebody get that guy moving!  Oh and of course those pretty ladies are part of his band and actually really playing their instruments.  Riiiiight.  Ha!  Don’t think I even realized there was a woman playing drums in the background.  Poor thing.  She hardly got any face time.

 

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