Monthly Archives: May 2012

Moments of Peace Part 7

Happy 3 Day Weekend All!  I hope you can enjoy the Holiday!  It will be a very special day for me on Monday because it’s also my Birthday!  I’m not sure how it’s already that time of year and I’m just gonna go with it.  It’s good to be alive.

Welcome to my new followers this week.  It is really so very cool to share my journey with all of you.  This week has been a very full week of ups and downs and roundabouts and I’m pretty exhausted.  Next week I am on a Rest-cation and I can’t wait!  I need the break badly.

It’s that time of week again where I like to review my Moments of Peace and share them with you:

05/18/12 My view from the sun deck as day turns to night. Clear skies and lots of views of planes that night. We are in the flight pattern of 2 different airports and I really enjoy watching the planes fly by.

05/18/12 My view from the sun deck as day turns to night. I really like how the sun’s reflections on the low clouds on the horizon give us the view of extra streaks of light.

05/18/12 Corey and our Cleo Kitty. These 2 are so in love. As you can see, Cleo has her own little playground on the floor with wrapping paper (that she just loves to sit on) and some kitty beds, and toys everywhere. We kinda like her.

05/19/12 My view from my balcony as morning turns to do. Some of the best views of the sky have come from my balcony. It is so nice to be able to see the big sky from our place.

05/19/12 My view from my balcony as morning turns to day. Another really neat view.

05/19/12 My view on a random street corner in West LA as day turns to night. I was running some errands and had to grab the picture before I lost the sun.  Oh and I grabbed it from the car.

05/19/12 My view in West LA as day turns to night. This time I wasn’t Driving While Taking Pictures and was on the sidewalk.

05/19/12 Being able to see Corey perform with improv group The Magic Meathands always gives me peace and lots of laughter. I was so happy to be able to get out and see him on the stage!

05/20/12 We went to Santa Monica, CA to see the solar eclipse on Sunday and it was wonderfully relaxing. The ocean always helps me feel at peace.

05/20/12 My view of the solar eclipse in Santa Monica, CA. The light was getting very dramatic at this point.

05/21/12 My view from the sun deck as day turns to night. Gotta love the twinkling LA nights.

05/21/12 My view from the sun deck as day turns to night. I turned to the right from the last picture and this is what I saw. Oh how I love the pinks!

05/22/12 My view from the sun deck as day turns to evening. It was kinda hot. Look at that intense sun!

05/22/12 My view from the sun deck as day turns to evening. I was trying to be artsy with this but it came out kinda weird. I really like the flatline effect of the sun.

05/23/12 My view on my walk in Santa Monica, CA. Look at that vibrant purple!

05/23/12 Had my absolutely favorite lunch at The Veggie Grill. They call it Buffalo Chickin’ Salad and it is not chicken. It is their own vegetarian version. It is so good and it tastes like chicken with the consistency too. I love it!

05/23/12 My view on my walk in Santa Monica, CA. Huge palm tree!

05/24/12 My view on my walk in Beverly Hills, CA. Such pretty simplicity.

05/24/12 My view on my walk in Beverly Hills, CA. Crazy strong sun!

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I HAVE A CRUSH ON ACUPUNCTURE!

I have to come clean.  I have a crush on acupuncture.  I LOVE IT!!!!!!  I can’t get enough of it!  I had an appointment today and my body is thanking me for taking the time to help.

It all started a little over 5 years ago when I finally took that long awaited leap into the well of Eastern Medicine.  I had heard rumors since I’d been diagnosed with multiple sclerosis at the time that acupuncture really helped.  To be honest with you I was scared.  I also had been taking an injectable  medication for my MS every other day for those 5 years and the last thing I wanted to do was add more needles to the mix.

Then a co-worker of mine just wouldn’t STOP talking about this acupuncture treatment she was getting from this really nice lady in Beverly Hills, CA and how I should try it sometime.  Well my goodness, I think I kinda went just to shush her up about it and it was absolutely THE BEST decision I have ever made about anything having to do with my overall health and well-being and it changed my life!!!

Not only is the acupuncture amazing but the acupuncturist is one of the nicest, most compassionate people I have ever met.  She sat there with me for two hours that first night and helped me learn all about me.  I was blown away.  She knew more about me than I did about myself.  She was able to pull diagnoses out of my mouth that I hadn’t even brought up to her yet.  I was thoroughly baffled.  And you know, to this day, she is able to pick up on things about my body that my other doctors haven’t even come close to considering.  She was the one who wondered if I had lupus, or what else could be going on besides MS.  She was the one who wanted to know what was going on with my digestion and thought it should get examined and the answer was a small intestine bacterial infection.  The list of her conclusions about me are endless.

That night I had my first treatment and there is no turning back.  She said my prominent issue was that I carried heat and have too much dampness in me.  I knew about the heat.  I didn’t tell her that I was always hot.  She could tell.  She said my skin felt like it was burning.  I didn’t know about the dampness but it explained why I have a hard time with the rain and with humidity.  So after she put the needles in my body she asked me how I was, put on some relaxing music, gave me an eye pillow and left the room.

I had the most profound experience.  I thought I was always going to have to be stiflingly boiling hot.  Within minutes it was like the dam broke and my walls started breaking down within me and the flood gates of cold started rushing through my body and I specifically remember the cold feeling started on my lower right leg and worked its way toward my head and over to the other side.  I thought someone had turned on the air conditioner or put a fan on me.  Nope.  That was acupuncture and that was only the beginning.  The feeling of RELIEF was an absolute miracle.  I didn’t know I could feel “better” like that.  I’m getting emotional just thinking about it still.

The other symptoms she has been able to help are fatigue, stress, hormonal, allergies, asthmatic issues, pain, stiffness, weakness, digestion, sore throat, sinus issues, upper respiratory infections and she has helped me find relief with my overall feeling of malaise.  The only time we hit a wall with my treatment was almost 2 years ago when I had my major lupus flare and we didn’t know I had lupus at the time and she really needed my doctors to help find the diagnosis in order to give me the best benefits.  She told me she thought she was flying blind.  Once she found out the diagnosis (lupus is one of the hardest diseases to diagnose) the treatments greatly improved again and I have been feeling even better ever since.

I have had a crush on acupuncture from then on.  After she and I agreed that I would benefit from acupuncture, she asked me if I wanted try acupressure and I took the next leap of faith.  Sure why not?  WOW.  That was amazing too.  My main flame of love starts with acupuncture and then follows to acupressure because for me I don’t get as much benefit with just the acupressure.  My treatment really needs to start with acupuncture and then go right to acupressure.

It is AMAZING!  I really feel like I have a crush.  I get all giddy thinking about having the appointments/treatments and I can’t wait to feel some relief.  My body is always active with some sort of autoimmune disease running rampant and it needs a “Pause and Calm Down” outlet.

Acupuncture has been the answer for me and I plan on continuing for as long as possible.

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It’s An ’80s Kind of Day Part 7

It’s that time of week again!  Bring on the ’80s!!

 

1. Girl You Know It’s True By: Milli Vanilli (NOT!)–or the REAL singers (Who were known as The Real Milli Vanilli?!): 3 OF THEM?–Charles Shaw, John Davis and Brad Howell:

OH THE CONTROVERSY!!!!!!!  Remember when we found out these two were not only lip syncing but THEY WEREN’T EVEN SINGING THESE SONGS AT ALL?!  Blasphemy I tell you!  And as I watch this I don’t understand what was so great about these two anyway.  Hilarious since they’re awful lip syncers too.  And what is with the horribly fake conversation in the beginning of the song in this video?  Honestly, the best thing these guys did was swing “their” hair around and around.  I’ll admit I kinda liked ’em a bit back then and the songs were very catchy (in the drive you crazy kinda way).  I still swear the voice we’re hearing is saying, “I’m in love with TWO girls” but what do I know?  Oh she is tellin’ him!!  Look at her go!  Oh and I’m just LOVING the leggings.  What the heck?  Holy huge shoulder pads.

 

2. Love Is a Battlefield By: Pat Benatar

Such a cool woman and so tough!  Love IS a battlefield isn’t it?  That’s what I remember when I was a youth.  Have you seen her lately?  She looks pretty darn good.  Awesome.  She just starts singing on a bus.  I hope they all join in.  Hmm.  Does she look young enough to be their daughter?  I think not.  Uh oh.  Looks like she’s gonna get in some trouble.  Look at those rad outfits she’s wearing.  That’s weird.  I remember this song had a rougher edgey sound to it than it sounds now.  Doesn’t have as much “mmph” as I remember.  I LOVE THE PART WHERE SHE DANCES with what seems like an army of women!  My favorite part big time!  Feels like she is telling him how it is!  Funny.  It reminds me of the dancing in Michael Jackson’s “Thriller”.

 

3. Enjoy the Silence By: Depeche Mode

You know, I still love this song.  In fact, I think I like it more now.  However, not so sure about the video.  Is he supposed to be a king?  The scenery is so beautiful, though.  It’s really a powerful message.  Only since I’ve grown older have I understood what “silence” might mean to me.  OK now what is he carrying?  So tell me, would a king sit in a chair like that measly thing??  I DOUBT IT!  What’s with all the flashes on the group in black and white?  Kind of annoying and not needed.  I want to walk where he’s walking.  Looks amazing.  Wow he sure does cover a lot of ground in a short time as he sings the song.  Looks like a lot of sitting and walking to me.  Where’s the relaxing part?  Are they frowning at us enough in the band shots?  What I’ve learned from this video: he has got to be really tired from all that walking.  I’m just sayin’.

 

4. Rhythm Is Gonna Get You By: Gloria Estefan and The Miami Sound Machine

I had her album.  Yep I did.  I really enjoyed it too.  I cracked up when I saw the words they’re chanting in the beginning were something like, “Yah Yay Go”.  OK then.  Whatever that means.  What is with all that tinsel stuff on her?  I can’t help it.  That “sexy” look she’s giving the camera while she hits that big drum is kinda scaring me.  Somebody really needs to clean out her hair or something.  OK Phew.  Enter the big hair.  WHAT THE?!  What is with the weird tribal guy dude in the audience?  Just a bit out of place?  The band sure does look like they’re having fun!  I wonder if the rhythm is gonna get me?

 

5. My Prerogative By: Bobby Brown

Bobby Bobby Bobby.  I guess you sure did think everything was your prerogative huh?  I think I heard this as a teenager and really wanted to tell everyone everything was my prerogative and that that would mean everyone would leave me alone or something.  Ha!  Yeah right.  Wow.  He really did think he was ALL THAT didn’t he?  He broke away from New Edition and was telling everyone he was gonna be IT right?  Hmm.  Everybody get ready for the whopping grand entrance onto the stage…Love the flat top hair or whatever the heck that hairstyle was back then.  What is with all the pelvis gyrations?  My goodness.  OK.  Who thinks this song is too long?  Raise your hand.

 

Woo hoo!  I got it done!  I didn’t think I was going to finish today’s Blog because I’ve been sooooo busy all day.  This is one theme I really look forward to.

Have fun ’80s-ing it up!

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Motivation: SOLAR ECLIPSE

Yeah I had heard that we’d be able to see the Solar Eclipse on the west coast but I didn’t think too much about it.  Then Sunday morning it occurred to me that it sure would be cool to see it at the beach.  I brought it up to Corey later that morning and he said, “Well let’s go”.  I don’t think either of us expected that I would actually agree to do it…and then that I would ACTUALLY do it.

I LOVE THE BEACH.  I LOVE THE OCEAN.  It is my place to breathe.  It is my spiritual anchor.  It is where I find most peace and calm and feel most present.  I HAVE BEEN AFRAID TO GO TO THE BEACH since I was diagnosed with lupus almost 2 years ago due to all of the sun exposure.  Not to mention that I also have the fear of getting too hot from the sun and my multiple sclerosis acting up.  I have got to really figure out how I can get myself there more this year because I actually gave in (after some hemming and hawing) and let myself go!  I mean for goodness sakes!  It is only 4 miles away from where I live and I am in Santa Monica, CA ALL THE TIME for doctor appointments.  Why not just take a detour and even drive through there and see the ocean on my way through?

Anyway, I had a wonderful time!  It was hard to see the actual Eclipse happening for most of it but it was so refreshing to be one with the ocean again.  To stand in it and be a part of nature was so fulfilling for me.  I just had to share some pictures with you:

05/20/12 Solar Eclipse in Santa Monica, CA. The glow from the sun was extra strong and so defined. The sun was more defined in this picture than in most I’ve taken.

05/20/12 Solar Eclipse in Santa Monica, CA. I turned away from the sun to see this palm tree and lamp post in the perfect artsy position for a picture as if they were posing. Thought it came out kinda neat.

05/20/12 Solar Eclipse in Santa Monica, CA. I am in my element.

05/20/12 Solar Eclipse in Santa Monica, CA. Love this action shot of me doing my newest ocean dance move?

05/20/12 Solar Eclipse in Santa Monica, CA. Oh yeah. Look at that wave crashing. The waves were kinda crazy too.

05/20/12 Solar Eclipse in Santa Monica, CA. Yes, I really did stand in the ocean. It was pretty chilly at first but it did get warmer the more I was in it.

05/20/12 Solar Eclipse in Santa Monica, CA. Corey with his sexy blowing hair posing with the sun.

05/20/12 Solar Eclipse in Santa Monica, CA. There I am trying to be deep and pose with the sun. No sexy flowing hair for me. 

05/20/12 Solar Eclipse in Santa Monica, CA. I sure was proud of myself for catching the lifeguard helicopter in the shot. Simple pleasures…sometimes.

05/20/12 Solar Eclipse in Santa Monica, CA. And then we went back in time and saw this beautiful ship.

05/20/12 Solar Eclipse in Santa Monica, CA. The sun was getting creative and producing these geometric shapes for us. Even the rays are in perfect places.

05/20/12 Solar Eclipse in Santa Monica, CA. Can’t believe how perfectly aligned the ship, the paraglider thingie and the seagull are with each other and then with the sun in the background.

05/20/12 Solar Eclipse in Santa Monica, CA. The light started getting pretty dramatic.

05/20/12 Solar Eclipse in Santa Monica, CA. One of my favorite things to see in nature is the sunlight reflecting on the ocean.

05/20/12 Solar Eclipse in Santa Monica, CA. Behind me were these pretty white fluffy wispy clouds against a VERY blue sky. And of course the palm trees are awesome too.  Wonderful.

05/20/12 Solar Eclipse in Santa Monica, CA. This line of palm trees caught my eye. I had to catch the view. And as you can see, there’s a light misty fog hanging in the air. Couldn’t see the mountains at all this time and the pier got lost too.

05/20/12 Solar Eclipse in Westchester, CA. Alas, we had somewhere we had to be so we had to leave the beach and it was here that we saw a better view of what was actually happening during the Eclipse.

05/20/12 Solar Eclipse in Westchester, CA. I had decided to try to grab one more picture on the spot and it turned out to be the best one in the whole series of the actual Eclipse itself. You can see the Eclipse happening in what appears to be a smile of light just above the building almost to the center. It was really cool!

 

So as you can see I did it and I had a great time!!!!!!  Neither the lupus or MS bothered me at all while I was at the beach in the sun and I think it was because I was in the moment and I wasn’t worrying about it.  Usually I can feel the sun bothering my symptoms right away.  The symptoms didn’t show up until the next day when my body said it was time to live in a cave of darkness for the day (kicking and screaming might I add) and it really did help!

Thank you to the Solar Eclipse for giving me the motivation I needed to get out and get to the beach where I mentally feel my best!!!!!  I desperately needed to do that for my own sanity and today I can admit that it really was worth it.

Categories: Motivation | Tags: , , , , , , , , , | 2 Comments

The Many Shades of…

Life?

Feelings?

Disease?

Lupus?

Multiple Sclerosis?

Thoughts?

Realities?

Colors?

Greys?

Emotions?

Me?

ALL OF THE ABOVE.

That is how I’m feeling today.  I used to think in black and white.  Then I discovered there were many shades of black and white.  Then I realized grey happens too.  And there are many shades of grey.  After talking with a friend today I have come to the conclusion that there are also many shades of all colors.  There are even colors that I didn’t even know existed.

THAT IS LIFE.

It is how I feel about the above list and much much more.  What a roller coaster this life is.  What a roller coaster my life is with MS and lupus.  I had a hard week last week mentally.  I felt completely depleted.  The weekend helped a lot.

Saturday was a pretty good day for me.  I was able to spend hours on the phone with a good friend from high school and that would’ve been hard for me to do even a year ago.  Talking can be exhausting for me cognitively (I know I know, those of you who know me can’t believe that with all the talking I do…).  Then I talked to my family after that too.  It was a big phone day.  I was also able to make it to Corey’s Improv Show to see him perform with the group he’s in, The Magic Meathands, along with a bunch of other really talented peeps and had a ball laughing and getting out of my head.

Sunday ended up being a really nice fulfilling day too.  Yeah, I was tired from my activities the day before but with a little coaxing Corey convinced me to go to the beach and watch the solar eclipse.  It was so nice to be able to walk on the beach in the cool sand (never walked on cool sand) and have my feet in the ocean while watching the eclipse.  It is when I’m standing in the ocean that I feel the most connected, present and at peace.  Everything else just falls away.  I don’t get to do it enough because I am afraid to be in the sun too much due to my lupus sun sensitivities and MS heat sensitivities so this was a real treat for me.  And the fresh air was wonderful.  It helped me relax A LOT.  Last night I thought I had gotten away with being in the sun because I didn’t feel too physically bad at all.  I think I actually felt better physically.

…UNTIL I woke up this morning with what I call the “heavies”.  UGH.

I was FINALLY able to figure out THIS MORNING that it’s the sun that triggers lupus and the heat that triggers the MS and thus the “heavies” begin.  What are the “heavies”?  You know those X-Ray vest thingies they put on you at the dentist?  That is what it feels like all over.  It’s crazy heavy fatigue.  It means I am in DESPERATE need of rest and I need to stop everything.  Oh and that wasn’t my plan today whatsoever.  I had THINGS TO DO.  Well, my body told me it needed rest and I was forced to listen.  Those THINGS TO DO are going to have to wait.  (I still hate to wait even though IT HAPPENS ALL THE TIME.)

So up and down and up and down and up and down I go.  The many shades that I referred to in the beginning of this post kept coming up in my thoughts this morning.  I don’t regret having a good weekend and probably doing too much.  I feel pretty darn good about it.  (That’s huge for me by the way).  It’s just soooooooooooo hard (words can’t describe my feelings–hence the many shades…) to live life with lupus and MS.  So frustrating.  Yet I’m grateful I was able to walk the beach and see the ocean.  I’m grateful to have had my time with Corey and that he performs and gives me excuses to get out and to laugh.  Laughter is the best.

And the many shades continue…

I will end with posting a couple of YouTube videos of James Morrison singing “Wonderful World”.  I LOVE HIS VOICE.  The first is the official music video which is really kinda odd but I like the production of the song.  The second is just audio and no video of the acoustic version of the same song.  I hope you enjoy them.  I heard this song almost exactly 2 years ago right before my whole body went to hell in what I later found out was a lupus flare.  At the time I heard this song my eyes had gone wacky and I was having an extremely hard time seeing and processing light.  I was feeling pretty darn down.  I heard this song and he really hit me.  He not only hit on my emotions that I still feel a lot to this day but he reminds me that I’m not alone.

Enjoy!

 

 

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Moments of Peace Part 6

Yay!  Time for hoots and hollers!  TGIF!  It’s FRIDAY!

Can you tell I’m excited it’s Friday?  I spent the whole week trying to recover and rebuild from the horrible medication episode I had last week and I still feel like I have a ways to go.  The good news is is that I’m in recovery mode and on the right path.  Somehow I keep on chuggin’.

Welcome to my new followers this week!  I’m soooooo excited you’ve joined me on this journey.  I’d love to hear from you!

And now for the Moments of Peace that helped me get through the week:

05/11/12 My view on my walk in West LA. Ooooooh sparkly light through the trees.

05/11/12 My view on my walk in West LA. You can’t go wrong with palm trees.

05/12/12 My view on my walk in West LA as day turns to night. I had to pet the furry leaves. I couldn’t resist.

05/12/12 My view on my walk in West LA as day turns to night. I love the simplicity of the framing and the bright orangey/red was so vibrant!

05/13/12 My view from the sun deck as day turns to night. Sneakin’ a peak around the corner.

05/14/12 My view on my walk in West LA today. Daisies! A family favorite. Reminds me of spending weekends with my Nana and stopping by the side of any road and picking up wild daisies in the brush. It was kinda crazy and soooooo neat to do.

05/14/12 My view on my walk in West LA today. Something about the way the sunlight is shining on these very green leaves and the way they shine just gets me. Helps to see such a clear blue sky and in LA too!

05/14/12 I made yummy vanilla creme cupcakes and they were pretty yummy. Really helped me feel peace on Monday that’s for sure. Gotta use my hands!

05/14/12 Beware the Corey-zilla! Yes, even this was peaceful for me. I can’t help it. The guy (my awesome husband) makes me laugh and giggle all the time…and he loves sweets that I bake too so both of those together really helped me feel some peace.

05/15/12 My view from the sun deck as day turns to night. Oh yeah look at that. You can see that star in the sky off to the left (barely but you can). I do believe that’s a planet but I’m not sure which one.

05/15/12 My view from the sun deck as day turns to night. Crazy to think that the picture before this actually did show some daylight when this one looks a lot later in the day (I only turned from right to left and this is what I got). That’s what lights will do I guess. There is definitely peace in the night sky too with all the twinkling lights. Oh and you can see all the bumper to bumper traffic on the freeway in the top right corner of the horizon. That’s peaceful because I’m not in it.

05/16/12 My view from the sun deck as day turns to night. I love love love when the sun looks through that palm tree at me. It’s hard to catch that moment but I caught it!  It was sooo pretty!

05/16/12 One of those magical moments when I actually caught the sun before it went behind the mountains. Just lovely and the sun was glowing! One of those really nice LA sunsets. Would’ve been a nice night to be on the beach but I’ll take what I can get.

05/17/12 My view from the sun deck as day turns to night. The sun just kept trying to force the clouds to open up! The marine layer/clouds from the coast came rolling in and left about an hour later to leave a very clear sky.

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Diagnosis Part 4: “9 Times Out of 10”

In October of 2002 I’m guessing I was out of my mind.  I must’ve been.  What was I thinking?  I was working a full time job, I had just finished working as a Production Assistant on a “B” movie that I never heard about again, I was still working out and eating really healthy and then I decided that I needed to get a second job because I just wasn’t making enough money.  Hey, I was 25 and I was invincible right?

Wrong.

It was October in Los Angeles, CA so I’m guessing it was quite hot.  It usually is at that time of year.  I wouldn’t have known because I was too busy running around.  I worked full time at my day job in television which had its own stress.  I walked every day during lunch and worked out at least three times a week.  I ate well and I had lost almost 50 pounds.  My second job consisted of working in a linen store and running around lugging big bed spreads and other bed linens up tall ladders and dealing with customers.  Things were going well…I thought.  Yeah sure it was a bit hard on me but it would be on anybody.  I could do it.

Somewhere along the way as my feet continued to tingle on the bottom, I started feeling that dreaded tingling symptom travel up my left leg.  Then it traveled to my left arm.  Then my left hand.  I denied it.  I ignored it.  It couldn’t be happening.  An echo of a memory of my Primary Care Doctor’s voice rang in my head from months before, “Is the tingling going anywhere else up your leg or in your arm?” and I told him no and asked him why to which he replied, “Oh no reason.  It could just be more serious if it ever happens”…”ever happens”…”ever happens”.  Those two words rang in my head but I pushed them away.

Did you know it’s really hard to push that tingling symptom away when it doesn’t go away?  I waited two weeks until the tingling sensation then jumped from my left hand to my right hand and then I admitted it to me and somehow told Corey about it.  I wanted to be in denial.  I wanted to believe it wasn’t happening.  If I didn’t talk about it it would go away.

So somehow I got over myself and called my Rheumatologist to make an appointment.  I sat in that exam room and I told her about these new symptoms.  She looked at me long and hard and kept her facial expressions very still.  Then she said she wanted to order an MRI for me.  I freaked out.  An MRI?!  BUT it’s just tingling.  That’s all.  MRIs are to check for serious things.  I only had tingling.  That was all I had been told by how many doctors till then?  Somehow I got out the words and I asked her, “Why an MRI?” and she beat around the bush a bit and said, “Well your symptoms could be indicative of many things.  9 times out of 10 it’s not MS but it’s always good to check just in case.”  And she also made some comments about the lack of attention from my previous Neurologists and how she couldn’t believe I hadn’t had an MRI before then but that she’d get it taken care of.

MS????  What did it even stand for?  I didn’t know it stood for multiple sclerosis.  Why would I know that?  It’s not like we learn about all of the diseases out there during our normal lives.  What was that?  It sounded awfully serious.  All I could picture was those poor celebrities we had seen in the limelight who were in wheelchairs, if anything.  Then again, why would it be MS?  I hadn’t been diagnosed with anything else so there was no need to jump to any conclusions now.

So how did she calm me down?  Well she talked to me about her health problems and how she had just had to have an MRI herself and she told me the tricks of where to put my hands and how not to feel too claustrophobic and what to do when I was in the tube, etc.  She tried to show me how she could relate and some of what she said still sticks with me now when I have to have follow-up MRIs as part of my multiple sclerosis healthcare plan.

You know I somehow knew I had MS.  I don’t know how or why but something about it clicked for me.  I spent a lot of time contemplating it and talking about it with Corey while I waited for my HMO to go through the horrible rigamarole that was “necessary” to get me approved to have an MRI.  I had to wait at least a few weeks to be able to schedule my MRI let alone have one.

And you know all of this didn’t stop me from keeping up with my crazy full schedule.  To me I had no reason to slow down and stop.  Not yet anyway…

 

The next Blog will be about my 1st MRI experience.  It was a truly traumatizing and life changing experience for me that deserves it’s own Blog entry.

 

Thank you for reading my story.  It is so very hard to write but so necessary to express and share.

Categories: Diagnosis | Tags: , , , , , , , , , , , , , | 2 Comments

It’s An ’80s Kind of Day Part 6

Yay!  I’m so excited!  I get to look at ’80s videos and listen to the music from my childhood.  I love it!  Ready?  I am!

1. St. Elmo’s Fire: Man In Motion (Theme Song) By: John Parr (Who?)

OK.  Who didn’t love the movie St. Elmo’s Fire?  I wanted to be as cool as these kids (who weren’t kids to me when I was a kid–they were all growed up) and Rob Lowe was just sooooooooooo cute.  What the?  What’s with this guy John Parr’s hair?  Is he supposed to be a part of the movie as he sings this or something?  I mean, Rob Lowe was just so cute.  Heck, he’s cute now still.  Who cares about his little video tape scandal way back when?  He’s cute.  And in the movie he was one of those “Bad Boys”.  “Bad Boys” were such a temptation for us “Good Girls”.  Oh I love that scene where Demi is in the room alone rocking back and forth with all the windows open and the curtains blowing so dramatically and then he bursts on in to save her!  So what ever happened to Judd Nelson?  Or any of those other big ’80s actors for that matter?  OH I get it.  John Parr’s watching them while in the movie.  He’s a stalker.  OK.  Now I’m really freaked out.  He’s singing to the cast in the end.  What’s happening?  Oh and I remember the “Good Girl” got the “Bad Boy” in the end…sort of.

2. Physical By: Olivia Newton-John

OH boy.  Those were the days.  I’m pretty sure I had to put on my leotard and leg warmers and get physical–you know–do exercise.  That is what I innocently thought this song was about way back when.  Oh the untainted minds of youth.  WHAT?  It is about doing exercises or isn’t it?  You decide.  WHOA.  That guy is like wearing nothing or something on that bicycle.  There sure are a lot of muscley sweaty glistening guys OM without faces in this video.  Help!  Those shaking buttocks are scaring me!  What was that?  I think I’m tainted for life.  I am so loving her head-sweat-band thingie.  Why does she have a strange halo over her?  OK.  Now I’m really scared.  What just happened?  Now there are all these not-so-fit guys (or wait a minute–is that the same guy?  Poor guy).  I know I work out in gyms all the time that are shiny black squares everywhere and that’s it.  Oh they’re not the same guy.  Alrighty then.  This video is truly insulting.  Hmm.  Love her color choices.  Bright teal blue and bright pink.  Nice.  So yeah.  I really did get physical and exercise with this song on when I was very young.  Scary.  OK.  Now what is with the shower?????

3. Karma Chameleon By: Culture Club

Interesting.  So we’ve traveled back in time with this one to Mississippi.  And of course it was a normal everyday thing to see Boy George singing in his very colorful creative garb on a rock back then.  Of course.  And now everyone of all races and classes and outfits are his audience and joining in and having fun.  Sure.  It was a party back then in 1870 in Mississippi of all places.  Yep.  He has a pretty good point in this song if you really listen to the words (which I’ll admit I didn’t really do so until right now) but it gets lost in the craziness of the song and all the theatrics of him and the video.  It’s kinda too bad.  Hearing this song brings me back to the times of yore as a youngster trying to call my dog Jenny inside from her outside adventures and it was sometimes hard to pull her away from the excitement so I’d sing, “Come-a Come-a Come-a Come-a Come-a Come-Jenny-un…” to get her to come in.  You know, she did come in sometimes to that.  I think she was tired of hearing me sing the nonsense and wanted me to shush but I needed to do something to entertain myself while I did it.  Loving the harmonica in this!  Oh and now enter the Steamboat…of course.  Hey I didn’t know he said, “Red Gold and Green” there in that part.  Hmm.  Who knew?  You know this is all totally accurate for what happened back then.  I bet it would’ve been fun to party with Boy George.

4. Pour Some Sugar On Me By: Def Leppard

An ’80s music video list is just not complete without some Def Leppard.  I mean, come on!  One of THE original Big Hair Bands of the ’80s.  And this song is just classic and by far their best of course.  Why?  Well because we all want sugar poured on us.  You know.  And of course because Big Hair Bands are just so cool we only really seem to see them in videos behind the scenes, rehearsing and then performing in front of the audience.  I’ll admit.  I enjoy this song more now then I did when I was a young gal.  It was just like, “Yeah.  Pour some sugar on me.  What’s the point?”.  And now I still don’t know what the point is but hey, I’ll enjoy it anyway.  Let’s all waves our hands in the air in the audience or wherever we are.  The big line of the song is coming!  Oh and it’s the one-armed drummer.  Now he is pretty darn cool.  How on earth did he do that?  Ahhhh yes.  The incredibly ripped jeans that were so IN and the white tank top he’s wearing.  They sure did look like they were having fun.  Oh and in case we didn’t know who they were he’s wearing a “Def Leppard” shirt.  Oh yeah.  I forgot.

5. Sweet Dreams (Are Made of This) By: Eurythmics

Up until about six months ago I always thought the title was “Sweet Dreams Are Made of These”–OH.  I didn’t know it was “This” instead.  Oops.  Corey will tell you that he doesn’t know why I’m putting this song on my list at all because I clearly don’t like them because I didn’t like ONE yes ONE of Annie Lennox’s (lead singer) songs when she went on her own.  I just can’t stand, “No More I Love Yous” or whatever the heck it is mainly because the radio stations played it into the ground and out the other side.  I thought she could do better than that.  BUT back to the matter at hand, I really like the Eurythmics and I LOVED her in the group.  She is too cool with her mega short red hair.  Who wouldn’t think she was cool?  I just love how she looks robotically human in this.  Ha!  Look at the video equipment they’re using.  Ancient.  Could they at least have gotten someone who knows how to type if that’s what they’re gonna focus on?  Awesome.  Look at all their records.  Nice.  Yep.  That’s a red dot.  I always wanted to just sing and point whenever I heard their songs and especially this one.  Now I know it’s because of that pointer she uses.  Cool.  The red dot becomes a video.  Nice effect.  Wait, where are they going?  What the?  Is that a cow?  Yes because we all play cellos in the middle of nowhere with cows around.  Random.  Love it.  She lays on the conference room table and a cow circles the room.  Hilarious considering I’ve been in the business world now.  As a kid I doubt I’d get it.  Let’s all herd together!  Is that guy really trying to type while a cow chews with her head right over his typing hands?  Too much!  Well at least she has pretty eyes–Annie Lennox I mean.

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Motivation: Baking For the Soul

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

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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