Motivation: Baking For the Soul

Posted on May 15, 2012 by Nahleen

Yesterday I had really had it.  Enough already!  I yanked myself together and I forced myself to get out and take a walk.  That helped a lot.  Then I threw in some laundry so I could feel useful and get myself moving and having clean clothes is always nice.  And I just couldn’t shake this complete and utter need to bake.  I was a bit concerned that I would be pushing it physically but mentally my mind was ready to explode.  I needed to do something with my hands.  I find that when I create with my hands it helps my mind immensely.  My soul was ACHING TO BAKE.

So I did.  I baked yellow cupcakes with vanilla creme filling.  Cupcakes are kinda hard for me to bake usually because of the extra hand, wrist and arm movements they take to scoop the batter in the little cups but I wanted them so I made them.  Good ole Ms. Betty Crocker and I got together and made them actually.  We had a rockin’ time!  And you know what?  They weren’t as hard for me to make as they used to be.  Sometimes I gotta just try and do it.  I’m glad I did.

Here they are. They are ripe and ready to get bakin’.

There they are. My little cupcakes are growing up!–Yeah ok the oven window could use a good cleaning. Hey, at least that means it gets used every once in awhile right?

They’re all grown up! Looks like the creme didn’t explode out of the center so that’s a big ole PHEW!

And now they’re all pretty and ready to go. The plate is from my Nana’s old set. I like to use it for special occasions.

Beware of the Corey-Zilla!!!! He kept threatening to lick them all and I couldn’t get him away from the kitchen. Sure there’s a steak dinner waiting but these are CUPCAKES!

Turns out these were pretty darn yummy!  And because I baked yesterday I’m feeling better today mentally.  And a lot of the time when I’m feeling better mentally I feel better physically.  So today is a much much better day overall!

Now I’m just trying not to eat the rest of the cupcakes that are sitting in the kitchen calling to me…

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Now Hiring for the Nahleen Blake Medical/Disability Department

Posted on May 14, 2012 by Nahleen

I need an assistant.  Actually I need a Department.  I wish.  If only…

This is all too much and I can’t keep up.

I can only do the best I can.

I spent the morning getting sucked up into the vacuum of disability and medical nonsense.  It didn’t take long.  First I called the Private Long Term Disability company I deal with to talk to the Finance Guy about money I need to pay them back from what they say they overpaid me.  He was a very nice guy which always helps the awkwardness and of course wouldn’t you know the UPS guy knocked on the door just as he called and I had to answer the door and be on the phone with this guy at the same time.  Not so professional but oh well.  I am only me.  I am only one person.  So now I need to hire someone to answer the door for me.  And then shortly after the UPS guy came my Cleo Kitty was insisting on getting attention and doing anything she could to get in my way.  AND I need to hire another person to pet my Cleo Kitty or better yet to talk to this Finance guy so I can pet Cleo Kitty instead.  Back to the Finance guy I was on the phone with, he passed off the responsibility of giving me any real answers and told me to talk to my Claim Manager.  Oh great.  Here I go.  Getting sucked into the crazy abyss that is the never ending calls of bottomless pits of not taking responsibility and sending me off to call someone else…and someone else…and someone else.  Perhaps they don’t want their money?  It’s hard to tell.

So I called my current Claim Manager.  You see, she’s the 3rd one I’ve had on my case so far in just over a year with this company.  It’s hard to keep up with who’s next on my file.  Of course she didn’t answer so I left her a message.  Will she call me back today?  I doubt it.  She only works till 3:30pm and has a habit of not calling me right back unless she needs something of course and then she hounds me.  Oh well.  The ball’s in her court now.  I gotta try to let it go.

And then because I’m a glutton for punishment I called the paralegal at my attorney’s office to see if she knew anything about the status of our newest action regarding Social Security Long Term Disability.  It’s only about the 5th time I’ve called her in this round of trying to get a hold of her so I wasn’t sure I’d actually get her in person and was getting ready to leave a message.  I was surprised to hear that I might be able to talk to her but wouldn’t you know she put me on hold for what seemed like forever.  Now I need someone to be on hold for me.  She FINALLY picked up her line and told me she JUST talked to a Supervisor at Social Security who told her NO ACTION had been taken regarding my financial issue and to re-fax the Request For Action to another fax number and they’d see what they could do.  Yeah.  Om.  When is that exactly?  It has been almost 3 months since we sent in the first request for action.  What’s the financial issue I have with Social Security?  Well, they have been underpaying me what I’m entitled to for benefits.  That’s the short and simple version of the story.  It’s too complicated otherwise.

So once I got off the phone with the paralegal I wanted to scream but I kept my composure and put my doctor’s office mentality on and called my Pulmonologist to find out if they had received my Home Sleep Study test results yet since it’s been over 3 weeks since I did the test.  The guy who answered said he saw nothing in my chart and was not going to do anything about it until I asked him to call the company and see where the results were.  He actually did budge a bit and told me he’d try to call sometime today or tomorrow but that Mondays and Tuesdays were their busiest day at the office.  OK.  What’s their point?  It’s not like I had the test done last Friday, I had it done 3 Fridays ago.

And continuing on with my list of phone calls, I called to make what will probably be my last Physical Therapy appointment for this round and was told I should really call by the end of the week to get a better time and that right now I can only get later in the day on the day I want next week.  Sure.  I’ll remember that too.  In fact, I’ll have my assistant make sure to call about that.  OH wait.  I don’t have an assistant.  Hmm.

And lastly of the medical/disability chaos rigamarole today, I called my acupuncturist to set up acupuncture and acupressure for next week and that went really well and yay I got appointments set up!  Phew!

Now I’m exhausted.

You see, that’s not all I have to do today.  I still need to exercise, shower, organize paperwork, pay bills, do some laundry–it’s cool to have clean clothes sometimes.  But what about the Recovery part?  I still need to schedule some time to rest and recover so that perhaps one day I not only feel better but maybe I can get better enough to get out into the world  and not run myself down with this medical/disability business crapola.  I’d like to work again one day.  That’d be cool.

To top it off, I’m STILL RECOVERING from my bad medication episode from last Wednesday.  That is almost a week ago.  I feel like I take 2 steps forward and 1 step back.  Yeah.  It’s a positive thing that I don’t go 3 steps back or something but for goodness sakes, I want to feel better than I do now.  I want to be back where I was physically and mentally before I took that dang pill.  One pill can change everything.  Ugh.

So now I guess I better stop writing so that I can take yet another break and get on with my day.  Here’s hoping the rest of my day is better.  How has your Monday been?

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Moments of Peace Part 5

Posted on May 11, 2012 by Nahleen

Hello!!!  Wow I am so thrilled it’s Friday.  I can’t wait for the weekend!  Welcome to all of my new followers!  I’m so excited you’ve joined me on my journey.  You are all awesome!

WHAT A WEEK IT’S BEEN:

Monday–Try to catch up with myself and with all the medical business that I didn’t get to take care of the week before (when I had 4 doctor appointments).  That included writing notes from my doctor appointments, updated my doctor list, updating my medication lists, etc.  It kinda felt neverending.

Tuesday–Had an appointment with my Primary Care Doctor.  He’s an interesting guy.  He kinda bugs me but he does try.  He was unhappy with the state of my blood pressure–I tend to go high–and tried to add another medication to help bring it down.

Wednesday–Had an appointment with me to take care of me.  It still feels like business in some ways when I do this and not exactly relaxing.  I try to schedule in more rest and do a special muscle soak bath.  Tried that new blood pressure medication.

Thursday–Woke up FEELING AWFUL and I was almost sure it was the new blood pressure medication.  Stopped taking it.  Spent the day recovering.  One little pill can feel so poisonous.

Friday–Hey that’s today.  STILL recovering from taking that awful pill on Wednesday.  My body continues to try to purge it out of its system.  Thankfully I am feeling better than yesterday.  Trying to be patient and gentle with myself.

Due to the roller coaster stress of the week I have definitely needed my Moments of Peace.  I can’t wait to share them with you:

05/04/12 My view from the sun deck as day turns to night.  The sky kept glowing.

05/04/12 My view from the sun deck as day turns to night.  Quite a big moon there and it is as if the moon is giving off wispy waves of clouds.

05/05/12 My view from Westside Pavilion in West LA as evening begins. We went to see Avengers that night and I had to get the picture from where I was. Loved Avengers by the way and highly recommend seeing it if you haven’t already. So much fun!  And…it was so nice to get out!

05/06/12 My view from the sun deck as day turns to night. Loving the moody sky.

05/07/12 My view from the sun deck as day turns to night. There is something about the sun peaking through the palm tree that I love love love!

05/07/12 My view from the sun deck as day turns to night. The sun is so powerful here.

05/08/12 My view on my walk in Pacific Palisades. I didn’t know at the time that the red/hot pink color would actually show up in the picture. Such a nice gift.

05/08/12 My view on my walk in Pacific Palisades. All I can say is WOW!

05/09/12 My view from the sun deck as day turns to night. The glowing sun.

05/09/12 My view from the sun deck as day turns to night. This time I was peaking around the corner at the sun.

05/10/12 My view from the sun deck as day turns to night. I love me some clouds.

05/10/12 My view from the sun deck as day turns to night. The sky often reflects what I’m feeling when I look at it. This was my worst feeling day this week. I think the picture speaks for itself.

And that was my week.  How was yours?  Have a shnazzy weekend!

 

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Not a Happy Nahleen This Morning

Posted on May 10, 2012 by Nahleen

I am so not a happy Nahleen this morning. I feel awful. I tried a new blood pressure medication yesterday–ONLY ONE PILL–I will NOT be taking that again.

I feel weak, depleted, achy, stiff, my body temperatures are going hot and cold, and I really feel like I’m getting the life sucked out of me. I’m trudging through muck and I feel like my hands are stuck to a stringy glue-like substance and I’m starting to lose touch with me.

I’m so frustrated and powerless. I had plans for a Physical Therapy appointment and I also had a commitment to fulfill for tonight. Both of these plans will now have to be cancelled for today…because of my body’s reaction to ONE PILL of a line of blood pressure medications that I previously struggled with six years ago. So I got to wake up off and on all night with my body feeling so “weird” and was given a chance to reminisce about those horrible days of trying crappy medications to take care of an issue that had nothing to do with my chronic illnesses. I think what was happening back then was that my multiple sclerosis and lupus (didn’t know I had lupus at the time) were feeling very overwhelmed by any new medication because I was taking a very strong injectable medication for my MS and they were especially unhappy with BP medications so my body went into purge mode. I remember all too well that I was starting to feel lifeless, like the medications were sucking the life out of me.

I have been currently taking a blood pressure medication that has actually worked out but my doctor insisted on raising the dosage by adding another medication and instantly my mind went into RED ALERT. I figured that I’d be okay this time because both my MS and lupus are being treated and I’m no longer on the injectable medication. WRONG. Turns out my body rejects diuretics altogether. No more. All done. I tried it for one day. My body hates it, doesn’t want it and it is all done.

I agree. I hate it, I don’t want it and I’m all done with it too. I will be calling my doctor today to let him know I’m not taking it. It has been a long time since I woke up feeling this physically crappy. Turns out I like my body much more without this new poison. Hey, at least it helps me have perspective that I don’t need to feel this crappy (and I haven’t FOR A LONG TIME NOW I GUESS) and that I want my previous body back–you know, the one from over 24 hours ago that hadn’t taken this stupid medication yet.

So today I will be resting, drinking lots of water, hoping my body can rebuild and repair itself and will do my best to have patience. It’s time to be gentle with me and to remember that I’m not the same person I was mentally or physically six years ago and I can get through this one thing at a time.

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It’s An ’80s Kind of Day Part 5

Posted on May 9, 2012 by Nahleen

Woo hoo!  This will be my 5th post about the awesome music of the ’80s!  I’m needing some fun today so let’s get on with it!

1. Alone By: Heart

OK.  Seriously.  Who doesn’t love Heart?  They are awesome!  I absolutely love this song!  I remember our cool bus driver putting a Heart cassette tape (yes, cassette tape–great quality of course) in the bus radio (someone must’ve requested she play it) and singing, no BELTING out the songs with other gals on the bus.  Not sure what the boys were up to but we gals thought we were pretty darn cool.  Video: Already loving the puffy curly blonde hair in the first shot.  The dark-haired singer is so pretty.  Also love her puffy curly dark hair.  They are sisters right?  And still going strong I believe.  OK, first of all I can’t help but chuckle at her standing on a balcony or something singing but to then see her with the black netting stuff over her face is too much.  What?  And now she’s on the big screen?  Where’d she go?  Uh oh.  Did the piano explode?  Oh my.  Listen to that great harmony (speaking sincerely).  Somebody needs to clean that room with all the curtains.  Looks like the whole band has big hair.  Of course they do.  Tee hee.  The three with their big puffy blonde hair show up in the darkness at the end.  Those gals were pretty darn tough huh?  And will somebody please tell them FINALLY “How do I get you alone?”

2. Tell Her About It By: Billy Joel

OH this song still haunts me.  You know how you have those memories you can’t shake?  I remember being 15 and at a Birthday party with a boy who supposedly LIKED me and all my friends were there.  This song came on and the boy still hadn’t “ASKED ME OUT” yet and my friends kept hinting and singing the song at us to try to give him the hint.  Hmm.  Well he did tell me about it later that night.  He was my first serious boyfriend.  The funny thing is that this party was in the ’90s and that song was playing.  Awesome.  Video: OK so we apparently have gone back in time?  And Billy comes out wearing a white suit jacket with white shoes to match and dark glasses.  Except to be ’80s style he’s wearing a red tie.  And then we see behind the scenes and it looks like that guy’s gonna make the moves on that gal in the control room.  Get it?  And I can’t help it but is that food on the equipment?  My old employer would’ve had our heads!  Anyway, wow, that audience is in sync with their swaying.  OK even the band is swaying.  Gotta love the back up singers.  And look at all the stars in this video!  And then we see a whole montage of people reacting to the music.  What’s with the kids swaying too?  I think I’m gonna get seasick watching the audience.  ACK!  Wait what?  Did Billy Joel leave the stage and go out into the real world?  He just left his band on the stage?  And now he’s breaking into people’s homes and singing to them?  Love the newspaper headline.  And then he delivers pizza to the gals slumber party?  He sure does get around.  OK.  This song is long.  Good thing it’s catchy.  And will you just “tell her about it”?  PLEASE!  What the?  The astronaut and the big scary bear thing.  What on earth?

3. Toy Soldiers By: Martika

She was basically a One Hit Wonder huh?  Really loved this song back then.  I think I sang it on the beach a couple of times.  Must’ve been thinking I was making my own video I guess.  She really cared right?  I thought it was so deep and listening to it now I still think it kinda is.  Video: VERY DRAMATIC.  So this was in 1989–on the cusp of the ’90s when big hair WAS SO NOT IN.  HAIR IN THE FACE AND EYES WAS IN–ESPECIALLY ON ONE SIDE COVERING ONE EYE.  The kids singing are pretty haunting.  Boy was she singing melodramatically to the camera in a lot of this when it’s not showing her with that guy.   OK.  That video effect: are we supposed to be seeing her sing through the rain?  Strange.  Anyone know if she really did lose someone to drugs or was she just making a hip anti-drug statement?  Or both?  Hmm.  Another long song.  A little too embellishing I think.  Actually, the video is too long but I never thought the song was.  Interesting.  So was he supposed to be the bad guy she got involved with?  And what is with that horrible wig she’s wearing when she’s I’m guess in high school?

4. White Wedding By: Billy Idol

Another Billy for my list today huh?  “It’s a nice day for a white wedding” he sings that line quite a bit in this song.  That might be all I remember from it.  He was pretty cool with his spiky bleach blonde hair don’tcha think?  Video: 3 wiggling butts is one of the first things we see.  Nice.  Looks like this video’s gonna tell another story.  What the heck?  What is he wearing around his head?  Hmm.  Quite the trippy video.  And he’s still singing with that thing on his head?  I keep laughing every time I see it.  Did he think that was cool?  And what’s with those women wearing black latex suits?  Are there enough crosses in that church?  Is he getting his point across well enough?  And you gotta have some smashing glass everywhere right?  A video just isn’t cool without it.  OK.  And then when she enters the church again they just put the whole previous montage on repeat?  Really?  What the heck?  ACK!  Is the rest of it now on repeat?  OK good.  It’s not.  It’s true what he’s singing here.  There’s nothing like things going wrong in the kitchen: you know, the toaster explodes…

5. Venus By: Bananarama

LOVED this song.  LOVED them way back when.  I wore out my cassette tape of their music.  They were cool and deep.  I just couldn’t believe this was a remake at the time.  So for the sake of this commentary, we’ll act like this is an original.  Video: Nice red room with a crooked painting in the wall.  And then the three of them dance in front of the camera.  Of course.  What else would there be to do?  Of course they’re doing the move with swishing their hand in front of their face over and over again.  Love what the goddess is wearing.  That’s the goddess right?  Whats with the psycho-eyed vampire lady in the coffin?  And of course there’s a fire video effect.  Duh.  And now we see lots of scantily clad men.  Alrighty then.  So she’s the devil?  She’s a sorceress?  I’m so confused.  And of course we need to see them in different outfits dancing in front of the camera in flashing lights this time.  Help!  That big bow on her head is gonna swallow me up.  So the message I’m getting is that women are trouble.  And this version is sung by women.  OK.  Thanks.

That was fun!  See you next week for more I’m sure!

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Motivation: GRATITUDE

Posted on May 8, 2012 by Nahleen

This morning I am grateful.  It’s such a relief to feel grateful.  It would be so nice to feel it all the time.

I’m grateful to be able to get up and face the day.  I’m grateful for so much love in my life from my husband, my kitty, my family, my friends, a huge support system, people in general and with life.  I’m grateful to have a roof over my head, an awesome car, for food to eat, water to drink, air to breathe–that I CAN breathe.  Then there’s my health: the progress of recovery, to take it one day at a time, really awesome proactive doctors, to be able to walk, to see, to move, to even function at all.  I have an abundance to be grateful for.  The list is endless.

What started this new round of gratitude?  I believe it was asking for more help yesterday.

Being on Long Term Disability has required an enormous mental surrender.  I have had to let go of what I thought I needed to have to survive: a job, a consistent paycheck, at least 40 hours of knowing exactly what I’m doing in a week.  It has been almost two years without that routine and somehow it’s all worked out.  Somehow Corey, Cleo Kitty and I have been taken care of.

BUT it takes A LOT of work.  I not only have to spend 24 hours a day 7 days a week taking care of me with self care but there is a mega amount of medical business to attend to too such as: medical insurance red tape, my plethora of doctors, a long list of medications and regimens, and dealing with Social Security Long Term Disability along with the Private Long Term Disability that is provided as part of the Benefits from my old employer.

YES I am truly grateful to have any access to Long Term Disability and to be taken care of AT ALL.  HOWEVER it is SO DIFFICULT to even admit I am disabled, to then ADMIT I can’t work right now, and then ASK FOR HELP, for financial assistance so that I can be a contributing member of society.  And not only is it hard for me to surrender to that need for help, but then they can make it SO HARD to even get the help I need.  This is NOT an easy process.

It is worth it because I DESERVE TO FEEL BETTER.  I DESERVE TO GET BETTER.

With that idea in mind it was so REFRESHING to call the Director of Benefits (yes, I have her direct contact number) of my old employer and let her know about the messy situation I’m involved in between both Long Term Disability Entities.  Not only did she LISTEN but she AGREED with me that that sounds like a mess and she seemed genuinely surprised this was happening.  I ASKED HER TO HELP ME and you know what?  She’s going to try to find out what’s going on and to do just that, help me.  She was nice and she was sincere.  She backed me up all the way.  It doesn’t mean she’s going to be able to change anything but it is just that much more empowering to feel her support and for that I am grateful.

GRATEFUL.

What a wonderful word.  What a inspiring idea.

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I HIT A WALL

Posted on May 7, 2012 by Nahleen

That’s what I did.

I hit a wall.  This is an official quote from my legal testimony at the Hearing to Appeal the Social Security Decision (they denied me at first but I’ve been approved since thank goodness).  The judge asked me what happened…why I stopped working.  I told her, “I hit a wall.”  Apparently that was clear enough for all to accept because my attorneys highly encouraged me to say that and the judge seemed satisfied with that response and moved on to the next question.  In fact, she didn’t have much more to ask me after that.

To me hitting a wall means I was all done.  I had no more to give.  I was in critical need of refueling my spirit physically and mentally and I had no energy left.  I’m not even sure where I had these stores of energy to begin with.  My work situation was toxic for me.  Whether I was reacting in a toxic manner, the workplace itself was toxic, or whatever… I had to get out of there.  I had no idea how to do that so my body decided for me.  In fact, it was screaming desperately for help.

I’ve heard talk over the years of trying to force a square into a circle and how that really doesn’t work.  Well, that’s what I was doing.  I was pushing pushing pushing through my days.  I only had knowledge of my body dealing with multiple sclerosis (had no idea I had lupus yet) and that wasn’t enough apparently I guess.  It might be for some people but hey, I could get up every day right?  Well, then I gotta MAKE IT WORK.  Sure I was taking care of myself, but like a machine.  I had a routine down.  I knew what I had to do to make it happen.  Sure I had mechanical self care down but where were my feelings in this?  I “had to” “had to”” had to” right?

Wrong.  2010 was a hard year for me with my health.  In the beginning of the year my thyroid started acting up.  Then in May my eyes started throwing up warning flags that I had surpassed the idea of being overwhelmed.  I was drowning.  May is a heavy stress time for people in my profession.  I was using everything I could just to work.  But what about the rest of my body? …I kept going.  When I look back I don’t know how.  A lot of that time is a blur.  And then in June I started having digestion problems that were keeping me up at night the pain was so severe but I kept pushing.  I was crawling inside and struggling so hard but even my denial was so bad I ignored it.  It will pass.  Really.  Right?

Nope.  A week after my stomach pains I was vomiting severely.  I’m not someone who vomits so I had no idea that the manor in which it was happening was out of control.  To me it felt like there was a monster inside trying to dig out my insides but I thought that’s how it worked.  I couldn’t do anything.  My body was ALL DONE.  I was somehow making it.  It must’ve been automatic.  I did everything I could to work and then at home I couldn’t do anything.  I had a “body migraine”.  ANYTHING and I mean ANYTHING would make me vomit: sound, talking, lights, reading, moving you name it.  By Friday I was vomiting and could keep NOTHING down.  By that Saturday night I was FINALLY in the ER.  Why did I wait that long to get help?  Because I really thought it was a stomach bug and it was going to pass.

I HIT A WALL…

You know, when there’s a wall that’s too thick, too tall, too low, too wide, too dark, and impenetrable you can’t get through it, around it, over it, under it, or anything.  My Body told my mind to Step Down and I had no choice.  I had nothing left.  I was beyond dehydrated and put on a VERY strict diet of chicken broth for over a week.  That was it.  That was all my body could take.  I had to rebuild my diet and ability to eat again.  Turns out my liver was toxic.  There’s that word again.  TOXIC.  Scary word huh?  Scared me enough.

FINALLY.

It wasn’t until two months later that I learned I had lupus along with multiple sclerosis.  Turns out my thyroid and eyes were acting up in the beginning of the year due to lupus.  I was probably having both an MS exacerbation and a lupus flare so that’s why I had no energy, severe fatigue, could handle nothing, and my digestive system was purging itself.  MY BODY WAS DONE WITH ME.  My running the show didn’t work anymore.  It was taking over and to me I had no choice.  I didn’t want to hit another wall.  I smashed so hard into the wall that I don’t know how there was any of me left.

I am still recovering and rebuilding from that physical and mental turning point in my life.  Because I’m still here and alive and kicking I try really hard not to find myself at a wall again.  It’s a struggle because the old programming says to go go go but I don’t want to feel that horrible and desperate ever again if I can help it.

MY BODY IS WORTH IT.  I DESERVE TO FEEL BETTER.

And I am slowly getting there one step at a time…

 

 

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Moments of Peace Part 4

Posted on May 4, 2012 by Nahleen

With 4 appointments this week I sure did need my Moments of Peace.  I’d love to share them with you!

04/27/12 My view from the sun deck as day turns to night. Thank you to the bird for adding a little extra enhancement to my photo.

04/27/12 My view from the sun deck as day turns to night. Loving the streaks of pink and the blues.

04/28/12 My view from the sun deck as day turns to night. That sun sure is intense.

04/29/12 My view from the sun deck as day turns to evening. Loving the white puffy clouds. My favorite.

04/29/12 My view from the sun deck as day turns to night. Looks pretty dramatic as the clouds roll in from the ocean.

04/30/12 My view on my walk in Santa Monica, CA. It was quite windy with no sun.

04/30/12 My view on my walk in Santa Monica, CA. LOVING my favorite purple in combination with the white. This picture came out better than I expected.

05/01/12 My view on my walk in Santa Monica, CA. Yes, I’m in Santa Monica again today. Most of my doctors are there. I’m not complaining. It’s a beautiful place. Something about the way the landscaping and the plants lined up really caught my eye with this one.

05/01/12 My view on my walk in Santa Monica, CA. The light is just poking through.

05/02/12 My view from the sun deck as day turns to night. It was cloudy all day but the sun really is on the horizon.

05/02/12 My view from the sun deck as day turns to night. I can’t help but notice these birds just keep sneaking into my photos. I guess they want their fame.

05/03/12 My view on my walk in Pacific Palisades, CA. It was a beautiful day! White puffy clouds and lovely blue sky. Wonderful!

05/03/12 My view on my walk in Pacific Palisades, CA. I really like the circular patterns in this photo. Really neat.

And that’s it for this week!  I feel a little bit better now that I’ve seen these Moments of Peace again.  I’m exhausted today so breathing helps.  Do you have any Moments of Peace you’d like to share?

I hope you all have a wonderful and peaceful weekend!

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Focus: Progress and Positivity

Posted on May 3, 2012 by Nahleen

Well, it has been quite a week! Let’s see if I can break it down!

*Monday:
I had a late morning appointment with my Ophthalmologist to do a vision exam to see if I need new glasses or not. It turns out that my eyesight has changed just a wee bit and although I’m still seeing 20/20 with my glasses (a miracle also since my eyesight is really bad. I am crazy nearsighted in my left eye which means I can’t see far away and I a have crazy astigmatism in my right eye.) but apparently I can see just a bit better and everything should look really sparkly once I get my new lenses. At the end of the appointment I asked my doctor when he thought I might just be able to wear contact lenses again (I haven’t been able to because my eyes have been so dry. He told me about a year and a half ago that I wouldn’t be able to wear contacts anytime soon because my eyes needed to be less dry and they needed to have some time to repair themselves.) and he considered it for a moment and then took a look at the current dryness of my eyes. Guess what? He said my eyes looked really good and so much less dry than they were and that I could wear contacts again!!!!!!! Woo hoo! Yay! I’m so excited! I haven’t been able to wear contacts for years. I’ll be able to see in 3D again. Sooooo, the contact lenses are being ordered as I write this! I was given a warning by my doctor to be careful about wearing them too much especially at first because it’s important not to make my eyes worse just because I’m wearing contacts again. He told me we’d both worked really hard to get my eyes in shape and he’d hate to see more problems so I needed to take it really slow and ease my eyes into wearing them again. Yes sir! Sure. Whatever. Just let me wear them!

I also had an appointment in the afternoon with my Dermatologist. I don’t like making two appointments in one day but they are in the same building which is really nice so sometimes I make exceptions. Turns out my Dermatologist thinks that considering what I’m up against with lupus (can get skin rashes, acne, hair follicle issues, eczema, etc.) I’m doing extremely well and we’ve now moved from a flare-up treating regimen to a maintenance treating regimen. Of course everything’s new and changed but it’s for different reasons. She thinks my skin looks really good and she said it’s because of all the work I’ve been doing to get there. I don’t have to see her for six months unless something comes up. She told me she’d see me sooner if anything flared up or to call her if I had any questions.

Wow! Now that was a great start to my week! Two positive appointments in one day! Awesome!

*Tuesday:
I had a follow-up appointment with my Rheumatologist regarding my lupus and she felt very good about where I was. Sure I had a long way to go and she completely supports my disability but there is improvement. She pointed out that I had made a lot of progress since I first started seeing her almost two years ago in August of 2010. We had a great discussion about my options and some details that had come up and she spent some real time answering my questions. I did more blood work as I usually do when I’m there now to make sure my organs are functioning correctly and then she told me she didn’t have to see me for three months! That is so cool! I graduated from seeing her every two months to seeing her every three months now! Amazing! That is real progress. I was seeing her weekly for quite awhile. It’s taken a lot of work to get there and what’s also awesome about it is that the work has actually paid off. I’m getting somewhere. She told me she’d see me sooner if need be and to just call her.

It was also my 1 Year Off of Prednisone Anniversary too! That’s huge!!!!!!!!

*Wednesday:
Phew. A day to breathe. I’m so relieved. What a positive yet really busy and draining first half of the week that was. I was able to have some down time which I try really hard to do on Wednesdays if possible so that I can refuel for the next half of the week. It usually helps a lot.

*Thursday:
That’s today! I’m getting ready to go to my second to last Physical Therapy appointment in a few minutes. I only have two left because my Physical Therapist feels that she’s done all she can with me and that it’s time to pass on all of the At-Home exercises to me and that it’s up to me to commit to doing them every day and to walking every day if at all possible. She says the idea is to help me get as strong and mobile as possible so that if/when exacerbations/flare ups happen my body is hopefully better equipped to deal with what comes my way. I have heard this so many times over the years but I’m really hopeful this time about it because the exercises she’s been giving me have already helped immensely. These last two appointments are just to finish up and to see what other exercises to give me to do at home and to give me a plan and baseline to work with. I am sad to not be able to see this woman anymore because she has been really great and very funny to deal with but I’ll admit I’m relieved because it was overwhelming to commit to seeing her at least twice a week on top of all of my other doctor appointments and other obligations such as resting and recovery too. Oh and having a life helps too if possible.

So this has been a week to focus on progress and positivity and it’s really helped my mental well being to hear that things are improving because for so long it didn’t feel that way and I have been feeling very burned out from all of it these days.

Here’s to more good days!!!

Categories: Uncategorized | 1 Comment

It’s an ’80s Kind of Day Part 4

Posted on May 2, 2012 by Nahleen

It’s time to par-tay like the ’80s!

1. Hold Me Now By: Thompson Twins

This was absolutely one of my favorite songs back in the ’80s and I can’t help but really like it now.  It’s one of those DEEP ’80s songs.  His big puffy hair at the front of his face is awesome.  And that tail!  Brings back memories.  Were there really only 3 of them?  Who are the Twins?  Are there Twins?  And is that Boy George doing all the cool percussion?  Cracks me up that they are against a blue screen but are making it look like they’re against a sky with those clouds (they probably decided to add at the end)!  They really do use cool percussion and other instruments to make the funky sounds in the song and you can see it all being done in the video.  Ooooh, that’s who sings the back up of “Babe your lovin’ heart” towards the end of the song.  Alrighty then.  Look at that!  They branch out to some red/orange-y-ness at the end.  Way to keep up a tight budget.

2. Nasty By: Janet Jackson

I think I discovered this song in the 2nd grade at a friend’s house and we had the best time dancing to it!  I loved it because I could have A-TTI-TUDE!  To me, this is when Janet Jackson was cool and didn’t get weird yet like all the Jacksons seem to get.  Hey, is that Paula Abdul walking in behind her?  When a boy takes advantage of me I want to be able to stand up in front of the screen at a movie theatre and start a music video don’t you?  That would be awesome!  Or how about just any time?  You know?  I think it was empowering for me to see her be so tough when I was so young.  And then to have boys dancing with me along the street as I walk would be pretty cool.  “Nasty nasty boys…don’t mean a thing…” ha ha!  It’s funny how the boys she might like are wearing black and red.  And I love this line, “I’m not a fool.  I just want some respect.  So close the door if you want me to respond”, as she’s getting in the cool car (of course).  Oh and this is the best, “No my first name ain’t baby it’s Janet Miss Jackson if you’re Nasty!”–so wait, does she want boys to be nasty or not???  I’m so confused!  HEY!  There’s Paula Abdul again and what is she still doing in the movie theatre?  “Who’s that thinkin’ nasty thoughts?”.

3. Livin’ On a Prayer By: Bon Jovi

Time for another big hear band hit!  We’re all livin’ on a prayer right?  At least that’s what Bon Jovi says.  Couldn’t help but love him back in the day.  I remember one of the “cool” DJs on the cool radio station at the time would come back on the air after airing this song and say, “Whoa!  I’m a millionaire!  Whoa!  Livin’ on my hair!” and he thought he was so cool.  Of course, I still can’t get that out of my head after all these years.  Somebody help me.  The video gets so dramatic right in the beginning as the band walks into the shot with big bright lights behind them and with them in silhouette.  Well isn’t that weird?  We just happened to catch them rehearsing for a concert.  And we continue the DRAMATIC effect in black and white.  Tommy and Gina really had it tough didn’t they?  Oh look at them having so much fun.  Not planned for the camera at all.  Nope.  It’s cool to look at the camera a lot too I guess.  Well look at that!  Now we see them in concert and it’s in color!  Get it?

4. Total Eclipse of the Heart By: Bonnie Tyler

When I was a young gal I wanted a boy to say, “Turn around” and then I wanted to be able to sing, “Every now and then I get a little bit lonely…” and go on and on like the song does.  What a pleading emotional song.  I still love it for that nostalgic effect but could she have been more emotionally sensational?  I can remember in high school my friend and I couldn’t understand “powder keg” and it took us FOREVER to figure out what she was singing.  We were so obsessed over figuring that out.  It was serious.  I think I thought she said “polly gag” or something.  You know.  The words we make up in our heads for songs we hear.  Whoa.  This video is soooo dramatic and I have no idea what’s happening.  Sooooo much randomness.  There sure is a lot of wind blowing where she is.  Those beings with light eyes are scary!  I am still laughing from the end of the video.  You gotta see it.  Help!

5. Footloose By: Kenny Loggins

This song was and is still so much fun!  Everybody cut footloose!  And ya gotta love the movie too.  I mean, it had Kevin Bacon.  You know we’re all connected to him at this point.  And his character sure did show them to lighten up and loosen up I tell ya.  Why not dance?  You gotta cut loose!  I don’t think we’d get the point if they didn’t show so many pairs of different shoes and people dancing in them.  Is that Ione Sky?  Is that her name?  Where’d she go?  Anyone seen her lately?

Hope you’re ready to par-tay through the rest of the week now!  Have fun!

Categories: '80s | 4 Comments

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