Monthly Archives: June 2012

Moments of Peace Part 11

Well, I’ve just put purple dye in my hair again!  I was so overdue.  It was getting BORING again.  I WAS GETTING BORING…again.  So while I sit and wait for the purple dye to do its thang, I’m thinking it’s a great opportunity to do my Moments of Peace Blog for today.

Raise your hand if you are THRILLED it’s Friday!!!  Sure I’ll sit here and raise my hand to myself and Cleo Kitty.  Yes yes yes!  Bring on Friday-ness!!!  Oh and welcome to my newcomers this week!  Everyone who reads my Blog rocks!  Thank you so much!

And now onto my Moments of Peace for the week:

06/22/12 My view from the sun deck as day turns to night. I mean look at those rays of sun!!! Golden!

06/22/12 My view from the sun deck as day turns to night. Even the clouds were golden!

06/23/12 My view at The Landmark Movie Theatre restroom (to see Brave–but NOT in the restroom–LOVED IT!) at the Westside Pavilion in West LA. They always have THE BEST flower arrangements. Go figure.

06/23/12 My view at the Westside Pavilion (after seeing the movie Brave) in West LA as day turns to night.

06/23/12 My view at the Westside Pavilion in West LA as day turns to night. The sun was crazy hot coming through the window and the window was tinted!

06/23/12 My view in West LA as night arrives. That is a plane above the moon. I couldn’t resist taking this picture because the sky was this deep twilight blue. Wish the parking lot light didn’t hinder the effect but oh well.

06/24/12 My view in Westchester, CA as day turns to night. Pretty pansies and lots of ’em!

06/24/12 My view from my car in Culver City, CA as day turns to night. Yes, I was at a stoplight…I think… Wish it wasn’t blurry but one of my favorite views of LA is when the tall palm trees are against the glowing dusk sky. The moon was soooo bright too!

06/25/12 My view from the sun deck as day turns to night. Love the summer sky with its various glowing shades of color and light.

06/25/12 My view from the sun deck as day turns to night. The twinkling lights were causing this “halo effect”. Was kinda weird but so neat.  Plus those dots of light in the sky along the horizon are planes getting ready to land at LAX.  One of my favorite things to watch as they line up.

06/26/12 My view of a crazy line of food trucks across the street from the Los Angeles County Museum of Art (LACMA). Life was rough trying to figure out just what to eat. I love quality problems! My food was crazy yummy and by crazy I mean by size and weight.

06/26/12 My view of a piece of the Berlin Wall across the street from LACMA. These quotes are very powerful. It was very humbling to see this.

06/26/12 My view at the top of a crazy tall escalator (crazy really was the theme at LACMA that day).

06/26/12 My view of Hollywood, CA from LACMA. You can just barely see the Hollywood sign over to the right of the photo at the top of the hills.

06/26/12 Hey that’s me next to a crazy giant modern art sculpture of wobbly plates at LACMA. I wanted so badly to try to tip them over.

06/26/12 My view of our reflection in the crazy long and large elevator at LACMA. I had NO IDEA I would be able to see our reflection. I just wanted to get an artsy view and now it’s even better because it shows me and the fabulous people I was there with. I had a really fun and silly time with them!

06/26/12 My view of all these lights lined up in a row at LACMA. They’re really cool during the day. They must be pretty neat at night.

06/27/12 My view from the sun deck as evening arrives. LOVE the BLUE!

06/27/12 My view from the sun deck as evening arrives. These are leaves from a new baby palm tree.

06/28/12 My view from the sun deck as day turns to night. Something about the way the sun’s reflection rings out into the blue of the sky really touches me here.

06/28/12 My view from the sun deck as day turns to night. The sun was peaking at me through the trees. See that lounge chair right there? I got right in that for a little bit as the sun set. Really nice and the cool breeze was making me giddy.

Well it looks like my hair’s ready to be washed and checked for purple!  Here I go!  Thanks as always for being you!

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The Downs and Ups…the downs and ups

–…ARE THE HARDEST PART…

Multiple Sclerosis.

Lupus.

Down.

Up.

Unpredictable.

I pick myself up.

I go down again.

I’m tired.

I can do this.

Maybe not.

I can try.

Blah.

Awake.

I feel heavy.

I feel clearer.

Can I even do this?

Oh hey! Look at me go!

Thursdays are my bad days now…

But Wednesdays used to be!

I’m starting to dread Thursdays…

But I made it past Wednesday right?

And the autoimmune disease pendulum just keeps on swinging…

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It’s an ’80s Kind of Day Part 11

And another week has flown by!  It is so time for some ’80s silliness!

1. Beat It By: Michael Jackson

This week marks 3 years since the passing of this King of Pop.  He was something else back in the day wasn’t he?  He played a huge part in my childhood and his music just sticks with me.  I used to love to dance to his songs.  I bet I was really great!  Ha ha!  This one is such an MJ classic.  Yeah they’re cool.  Look at that ’80s wardrobe!  That white jacket with the big collar rocks!  Yeah man!  Nice piano shirt Michael.  I don’t think I had any idea he sang in his bed for so much of this video!  How strange.  “Just Beat It!” and then the manly groan afterwards.  Awesome!  Yay!  The classic red jacket, black short pants, white socks and black shoes!  Go Michael!  He’s gonna tell them how it really is!  He has really white teeth.  Alrighty.  Hey!  He changed his shirt!  Where’d the piano go?  Love his dancing!  I so wish I had even an inkling of his moves.  I had a friend who could impersonate him pretty well.  Uh oh!  Looks like there’s gonna be a rumble!  Why do these guys look like they’re doing some sort of mating dance?  Oh Michael was such a peacemaker.  Well that was easy.  I think we should all break into dance instead of fighting!

2. Walk Like an Egyptian By: The Bangles

You know, The Bangles were pretty cool.  I mean, who didn’t like “Manic Monday”…BUT what was this one all about?  Seriously.  They were cooler than this.  Yeah, big time catchy but come on now!  Love love love all their big hair!  And is one of them wearing a body suit?  I’ll admit, I fell for the whole idea of “walking like an Egyptian” but talk about silly.  And then to see them all in costume and doing a dance.  Help!  Are there hands in the audience doing the moves?  Oh dear!  Of course a favorite of the ’80s era music video, to catch “real people” on the street doing the “moves”.  Yeah, that’s real.  Uh huh!  What the heck?!  I forgot about Princess Diana!  That is messed up!  Wow, the lead singer is wearing a very short dress!   Goodness!  I mean, I know there’s more of a point to this but they could’ve done so much better with it.  So silly!

3. Faith By: George Michael

Who can go wrong with this song?  I love the point, “You just gotta have faith”!  I thought he was cute when I was younger but now as I get older, he’s pretty darn hot in this!  Can’t deny it!  And let’s all admit, he was so much better on his own and not with that Andrew guy in cheesy Wham! (don’t get me wrong, I love them but they’re cheese all the way–well mostly…)!  Ha!  I forgot the video starts with music from “I Want Your Sex”.  That’s kinda funny.  A jukebox…with records.  What are those again?  Can’t help but love how the blue/purple color stands out in the black and white.  I bet they thought they were cool.  Oh the sexy sunglasses and unshaven-ness.  OH and look at that hair-sprayed hair bouncing around with him!  Such a basic video.  No real theatrics.  Amazing.  “You gotta have faith-uh faith-uh faith-uh”…”dooo dooo doo doo doo”…Awesome.  Yep.  This woman has long bare legs and high-heeled shoes on.

And that’s it for this week’s edition of ’80s goodness!  Have fun!

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Victory!: 3 Weeks Without Doctor Appointments!

Yay! I’ve made it 3 whole weeks without a doctor appointment of any sort. I have 2 more weeks to go of this time off I scheduled for myself. I hope I can make it!

It has definitely been a learning experience about how to live with myself and with life without a world built just around doctor appointments. I am happy to say that it is quite peaceful and quiet. Almost too quiet–but this is not a complaint. I need this quiet! I need this me time. I need to have time to recover, recuperate, rejuvenate and readjust to the world around me.

Thank goodness for it! Thank goodness my health is “good enough” for me to be able to take this break. I wouldn’t have been able to say that a year ago.

My more than full-time doctor appointment life starts back up in the 2nd week of July…BUT I won’t think about that right now. I gotta live in the NOW.

THE NOW: getting ready to go to the Los Angeles County Museum of Art (LACMA) today!

So no time to waste!

Yay! Time to get “art-ed”!!!!

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Moments of Peace Part 10!!! SPECIAL CLEO KITTY EDITION!

I just had to share this with you!  Last night I had the most specialest wonderfulest neatest amazingest cuddle and peaceful time with our Cleo Kitty!

Ever since her diagnosis of cancer in December 2011 she has been extra lovey.  Actually, I think all three of us have become more lovey with each other and really pulled together as a family.  And Cleo Kitty is doing really well and very much alive and very much kicking these days!  She’s not only extra spunky but she is EXTRA affectionate most of the time and last night was a breathtaking example of our bonding.

She got on the table I was typing at and kept walking over my arms and in the way (OF COURSE!) trying to get my attention.  She has a habit of doing this and sometimes I’ve put my arms around her and held her and she’s put up with it but last night she not only let me hold her but she backed up into me, settled her butt on my arm and snuggled into me.  First there were no purrs but then they started too!!!

I lifted my arm away to let her know she was free if she wanted to be and she stayed right there.  It was one of the most beautiful experiences I have ever had EVER!!!  Sooooo peaceful.  This Kitty knows how to love and she teaches me more and more!

Sooooo, as usual during times with Cleo I reached for my phone (to try to get some pics and at least share with Corey) and now that I have a nice fancy one, I could turn the camera so it was facing me (not as good quality but who cares when you can catch THE moment).  I didn’t care that my hair wasn’t done “right” or that I didn’t look that good.  This was about Cleo and I and capturing our time together if possible.  What came out of it is a very special photo shoot that brings me to tears every time I look at it.  I had no idea what her facial expression was and what touches me even more is how much love she is showing so willingly on her face and usually she looks a bit irritated at me for taking pictures.  This was not the case.  I wanted to share these special Moments of Peace with you all because our little loved ones with fur instead of hair have so much to teach us and soooo much love to share.  I love her soooo much!

06/24/12 Me and My Girl! #1  She was rubbing all over me.  This is one of my favorites!

06/24/12 Me and My Girl! #2 You can’t see much of me but it’s ok.

06/24/12 Me and My Girl! #3 She sat right up to my head snuggled and let me kiss her back.

06/24/12 Me and My Girl! #4 Not the best picture but I wanted to show that I was really holding her.

06/24/12 Me and My Girl! #5 This is my favorite one! I think the picture says it all.

Thank you Cleo Kitty for the Honor of being that close to you!!!  You are truly very very special!

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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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