Posts Tagged With: MS

MRI

Posted on July 17, 2012 by Nahleen

I got to have an MRI (Magnetic Resonance Imaging test) test done on my brain today.

Good times!

Yeah not so much. I figured out today that I think this was my 15th one in the 10 years since my MS diagnosis. I never get used to them. I might know more about what to expect but that’s about it. Something about lying in the tube (feeling like I’m either going to be abducted by aliens or lift off in a spaceship), ear plugs in my ears (to hopefully block the very bizarre sounds that come from the machinery yet it can still be quite loud–but good luck when the technicians talk to you because you probably won’t hear them and you can’t move your head so that poses a whole other challenge), with your head locked in place, on a very very flat surface (when are they going to come out with cushiony mattress and pillow-type MRIs????), what looks like a cage over your head and sometimes even earphones for music (that ends up possibly blowing out your eardrums too) just really isn’t my cup of tea. Oh and then if the doctor orders Contrast (special dye to help bring up the trouble spots in my brain) then that’s a whole other set of good times, since I have to be pulled out of the place I was stuck in only to be teased to see a bit of the outside world, to talk but have no idea how loud I’m talking (ear plugs), be talked to by the person putting the needle in my vein (let’s hope it’s in the vein because it has hit muscle before and the pain is ridiculous), and then once they’ve decided I’m all set I have to be put back in the tube. That last part is usually the hardest for me because I know I’m almost done (they do contrast at the end) and that time seems really really draggy long.

I know. Crazy to think I don’t like any of the process. Also knowing that I am in there because I have multiple sclerosis and these MRI tests are necessary as routine check ups at least every year (and sometimes even sooner depending on what’s been happening in your body) and that there is NO END in site for the disease or for these MRI tests (because even if I don’t have health insurance I will be doing my best to have these tests done) doesn’t help either.

When I’m in the tube I hate that I can’t move. It was already hard when I was healthy (or at least I think I was healthy once–don’t remember much of that) to be stuck in one position and not be able to move (not sure when I ever was not able to move now that I think about it but anyway), but with MS and lupus, if I’m not moving I get really stiff and I start to have lots of pain. Plus I’m not comfortable and I’m probably bracing myself so I don’t even move one little millimeter because I’d hate to have to do it again so then I get worn out from using up all of that energy. And I’m a bit claustrophobic so that doesn’t help me at all and I just have to try not to think too hard about where I am and try to have faith that it’s all going to work out OK. Oh and how could I forget that I can’t wear my glasses in there so then I’m blind (yes, I have contacts but I’m still learning very slowly how to wear them again–long story).

Sure these tests help doctors diagnose many issues that might be happening with our brains and other parts of our bodies. Specifically when it comes to MS, it helps doctors find out if we have any lesions (or more lesions in my case) on our brains and if so, if they’re active and then they can see if the MS has progressed or not and what to do about it if so or even if not. Sure it’s eventually over. Sure it’s not nearly as terrifying as the first MRI I had almost exactly 10 years ago.

But see that first MRI when I was 25 (10 years ago) was ABSOLUTELY TRAUMATIZING AND TERRIFYING to put it lightly. I have yet to be able to even post all of the details of that part of my Diagnosis story here on my Blog because it was so hard to deal with and I still have so many issues in regards to that whole experience. I’ll just say that I’ve never been and hope to never be stared at with such pitying eyes (as if I was going to die and things were oh so “dire”) as that first technician looked at me with because she thought I had a brain tumor which then lead me to 3 very agonizing and awful days in the hospital stuck in some Alfred Hitchcock/Twilight Zone/Ray Bradbury story of my very own as the doctor finally told me that I “might” have MS but he wasn’t really sure so I should look it up online. But I digress. That really is a whole other story.

The point I’m trying to make here is that MRIs still suck after 10 years. BUT I’ve made it through each of them. They have come a long way in 10 years. The tubes aren’t nearly as long usually for me, perhaps there’s a bit more room, they may not be as loud (hard to say since each place is so different), I do have a pretty good idea of what’s going to happen, I know I can do it, I don’t have to get completely undressed and put on a gown (just had to take off my bra today or anything that had metal and was able to stay dressed–AMAZING), and I survived to write about it.

That’s something. It’s also not the hardest medical test I’ve ever had to endure.

I JUST DON’T LIKE THEM.

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EVERYTHING IS AN EVENT: Grocery Shopping

Posted on July 16, 2012 by Nahleen

Grocery shopping: IS STILL A HUGE EVENT FOR ME!

I’m exhausted…from grocery shopping. I still haven’t even put away the groceries yet because I need to sit, rest my body, and apparently rant. So that’s where this Blog comes in.

Multiple sclerosis and lupus are hard. They’re especially hard right now in July. Sure it’s a cooler day in Los Angeles than it’s been in the past week BUT it’s still too warm for my MS today and the sun is crazy intense and my lupus is yelling at me right now. What’s my biggest symptom right now? Fatigue. Don’t have much energy left. I’m hoping it rebuilds again because otherwise the groceries will be sitting on the counters and the floor in their bags and we’ll be eating and taking things in and out of the bags as needed. What about the frozen stuff? Well, there’s no ice cream in there so we’re safe that way. HOWEVER, even if there was, I had better sit down RIGHT NOW or MY BODY WILL SIT DOWN FOR ME AND IT’S NOT GONNA BE PRETTY…

I find myself having fantasies of deciding spur of the moment to go to the grocery store and picking up some groceries and you know, hopping in the car, and driving over to the store, and going in and getting what I need and leaving and being able to just whip the groceries into the fridge and the cupboards and then be able to go on with my life and the rest of my TO DO list. Oh and of course I’m singing and dancing up and down the aisles and just having a merry old time!

It doesn’t happen that way. NOPE. I have to plan it as an EVENT. Yes, an event. You know those big and important things we plan ahead of time and do special? That’s GROCERY SHOPPING for me. If I plan it for a specific day I sure hope I feel up to it. It takes a lot of energy and exercise to do such a thing. If I don’t feel up to it I have to wait till another day. OK. I’ve done that a lot lately. It sort of goes with the territory. If I have something else planned for that day I probably can’t go on that day either. It really has to be its own thing. And if we run out of stuff to eat, well then we run out of stuff to eat. It’s gonna have to be an “oh well”.

And so I at least did THE shopping today. I pulled myself together after already having taken a walk (need to walk to keep up with exercise and to hopefully keep my legs moving) and a shower (another big event), and then I had to put on sunscreen, pulled on sun protective clothing (yes even to go to the grocery store) and that included long sleeves (tricky during the summer because then my MS gets unhappy) to help block more of the sun, put on a hat (again–sun protection), made sure I took all my medication and had something to eat, made my way through the warm apartment building to the hot car and put on the AC, drove to the store and used my energy to drive and dealt with other people in other cars on the road, parked (hoping there was a handicapped spot–yes I use a placard because I need to save my energy as much as possible OH and hopefully there’s a spot available–can deal not using it but helps immensely to use these spots), got a basket, walked in the store, tried to keep up with a list I had written to get the stuff, used my body to get things off shelves and put them in the basket, back tracked through the store because I’d forgotten things, had to stand and walk the whole time while pushing and pulling the basket, dealt with other people in the store, stood in line at the check out, put the stuff from my basket on the belt thingie, talked to the cashier and then paid, pushed the basket to my car, unloaded the bags of groceries out of the basket, put them in the hot car, drove to the apartment, parked, started unloading the groceries bag by bag, took quite a few trips back and forth, unloaded the bags in the apartment, still need to unload the groceries, put them in their places, and then go on with the rest of my day and my life. Well I’m pretty worn out just from writing this.

Now don’t get me wrong. I know this is something we all need to do and have done before. I just can’t believe how much I ever took for granted even when grocery shopping BEFORE MS and lupus. It’s crazy. This was just what I did. I didn’t even think much about it. But after writing that last paragraph and pretty much going through the whole process step by step it’s CRAZY the amount of work it is to shop for groceries. I’m truly GRATEFUL for all that I can still do in regards to this. Quite often I need Corey’s help and there have been times he’s done the shopping on his own but he works so much and drives so far and I like to be able to do what I can to feel useful too.

BUT it’s a lot and I’m tired of it being A LOT. So I’m holding out HOPE that one day it won’t be as HARD to do something we all do to sustain our lives. There are so many things that feel like EVENTS to me. I just want them to be what they are. I don’t want to have to negotiate so much with my body because I already have 2 HUGE and INTRUDING diseases taking over my well-being: MS and lupus.

And THAT is my RANT about the EVENT that is grocery shopping.

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It’s An ’80s Kind of Day Part 12

Posted on July 11, 2012 by Nahleen

OMG!  It has been over a week since my last Blog post.  I guess I needed that break.  And I’m jumpin’ back in with the ’80s because I need more fun in my life!

 

1. Heart of Rock n’ Roll  By: Huey Lewis and the News

He is one of my all time favorites!  I currently play his CD quite a bit.  He helps get me going to face my day.  He was one of my favorites as a kid and I learned all the words to his albums right away.  They’re fun and quirky!  And you gotta admit he’s a bit goofy.  For the longest time when I was little I didn’t realize the first drum beats are supposed to be heartbeats, hence the first name of the song being “Heart”.  Duh.  Hey, I was a kid.  Give me a break.  He and his guys were so funny.  Looks like they had lots of fun together.  And there were so many words in this song and locations that I always was messing them up.  Not even sure I know them all these days.  Cool!  The clubbers have the rockingest hair!  Too silly to see them all looking stunned and out of place.  I don’t think I’ve ever seen this video before.  So does he think his music connects with the first rock and roll music like Elvis?  HMMM….  Not so sure about that.  OK they all have the same hair and it’s funny.  What the heck?  Old audience footage of crazy screaming girls.  Hmm.  Still not seeing the connection in regards to Huey and his group.  Just sayin’.  Love the hokey orangey/red blinking light inside his jacket.  Ha!  Scary eyes!

 

2. I Wanna Dance With Somebody  By: Whitney Houston

Such a sad story and may she rest in peace.  However, she sure did show some joy at least in the beginning of her career.  Her energy oozed out of her music and made me want to dance with somebody too.  I really liked her as a kid.  I had her first album and she looked so pretty on the cover.  Such a beautiful voice.  And this song sure does make me wanna dance with somebody too.  Got any ideas of who?  Hello shoulder pads!  Hello tons of makeup!  So could SHE dance?  Not seeing her do much of that in this video.  What’s with all the different guys dancing?  Is she auditioning them to see who she wants to dance with??  You know she’s not the best lip syncer in this video to her own song.  Kinda funny to watch.  Help!  There are dressing room legs dancing!  I remember I was so confused about how her hair kept changing.  How could that happen?  OK.  Excuse me while I start dancing with somebody.  Starting to bebop in my chair as I type this.

 

3. Separate Ways  By: Journey

YES!  Love this song.  So powerful.  I remember I thought it was so deep (still kinda do, ssshhhh, be nice).  LOVED Journey when I was younger.  So perfect for a confusing time as a teenager.  ROCK IT!  Such a great song to belt out.  You gotta try it sometime.  Look at those white heels walk fast.  “Two, two, two”–so two?  Such a weird camera angle.  Why are we looking up at them?  Anyone else with me here?  So we’re supposed to think they’re better than us?  Hmm.  Not such a great style idea in my opinion.  I’m sure they thought they were cool but still.  Doesn’t work out right.  And oh his hair.  Do you think he really means all this?  Should someone give him a hug?  The guys singing behind him are cracking me up.  The one on the right keeps singing off.  Too funny.  Such a big voice for such a little guy.  He sure does like to sing words three times in a row a lot.  And what is with the setting?  Who designed this??  Whoa.  She has big hair!  Can we say Aquanet?!

 

4. Bette Davis Eyes  By: Kim Carnes

So what else did she sing?  Good question.  BEST RASPY SINGING VOICE EVER!  My memory of this song as a kid was “Who the heck is Bette Davis and why do I care?”.  I chuckle to think about it.  Hooray for Bette Davis!  How many fans do you think it took to blow those curtains in that blank room?  She’s wearing sunglasses.  Ha!  Oh and look at that shadow on the wall.  Clever.  But so boring with the black, white and grey and yet I’m sure it’s obviously connecting us to the black and white movies right?  Didn’t we all go there right away?  Still boring if you ask me.  Horrible reflections of lights in her dark sunglasses.  Ooops.  Oh there are her eyes.  Is it me or does she look AWKWARD and uncomfortable?  Fling that blonde hair around!  Weird reenactments.  Can’t help it.  She makes me want to clear my throat.  What on earth is the drummer wearing?  Such a loooong song.  Goodness.

 

5. Still Standing  By: Elton John

OK.  I think we can all agree that this is so not his best song.  However, you have to admit it’s VERY catchy and you can’t help but sing it a little bit.  And I like to sing it and belt it out because hey, I’m still standing and it’s nice to note considering I have MS and lupus and it can be quite hard to stand.  So there’s a current personal connection to this that I wanted to share.  And of course he’s driving down the road in his flashy attire and there are groups of people dancing.  Isn’t that what we all see all the time?  It would be kinda cool if we did don’tcha think?  Now that’s a lot of body paint.  Cool human domino effect!  Well done!  Hey, that looks like Santa Monica!  I want to have a piano on the sand by the ocean!  Sure are lots of antics in this video.  Ha!  Love all the different sunglasses at the end!

 

Well that was tons of fun!  Any ’80s memories you’d like to share?  Would love to hear from ya!

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 2

Posted on July 2, 2012 by Nahleen

….do anything during the summer.

Sure we’ve been blessed with cooler temperatures than the rest of the country here in Los Angeles, CA all June and into July, but that doesn’t mean it isn’t summer.

Summer, MS and lupus mean more intense sun and more heat.  A BAD COMBINATION!

More intense sun and more heat mean my MS and lupus flare up more.

More flare ups mean I don’t feel as well.  They mean that I find myself negotiating every action I take even more and everything takes EVEN MORE EFFORT.  EVERYTHING.

I know this is how it works.  The summer is hot.  There’s more sun.  However, logic doesn’t block the fact that I feel worse.  Logic only seems to help me have answers as to why I feel the way I do.

I tend to either miss social events more or suffer more.  This weekend was a great weekend BUT it was still hard.  I was able to take an Indian cooking class on Saturday night and actually go and EVEN participate–BUT I had to take on the dish that didn’t require heat.  Kinda hard to do but I managed it since there was one dish that mainly needed to be stirred and then put in the fridge.  I still needed to wear longer sleeves because the sun’s UV rays come through windows and can still bother me.  I still ended up standing a lot which was my choice but still tired me out.  Sometimes sitting really isn’t the answer either.  I was still out and away from my home comfort zone and socializing which I love to do but it can be tiring.  It was still an EVENT.

Then Sunday I got up and baked some brownies for a post wedding potluck party.  I do enjoy baking but that required heat.  As much as I could’ve bought a dessert at the store I was up to making them so I did, yet that of course required heat.  Then I pulled myself together and drove to the party which was kinda far away but this newlywed pair is important to me so I wanted to go and support them and I still BASICALLY felt up to it.  I was at the party, wearing my hat, sunscreen, a sunprotective jacket and tried to stay out of the sun BUT it was still very hot, I could still feel the UV rays from the sun in the shade and it was one of those weird times when my MS and lupus were arguing and neither were happy.  Most of the time they will deal with a compromise but this time neither was happy.  With the jacket on I was too hot and my MS acted up.  With my jacket off I was too affected by the sun and my lupus acted up.  So I dealt as long as I could because I wanted to be there and then once I left and was in the car with constant intense sun beating on me through the windshield…

UGH!

I had an awful wave of what I call “wave of weird” or “overwhelm” where I felt nauseous and too hot and too much sun and felt my body shutting down.  Enough was enough.  The sun was SUCKING the life out of me.  Then I had this crazy wave of emotion come through me and as much as I tried to hold in the crying, I let myself cry and that was what helped the most.  I surrendered.  I didn’t hold it in.  I didn’t fight any longer and I cried.  It didn’t last long but I had had enough.  When I think about it, there was nothing else to do but cry.  Now one thing to note is that there is an “emotion symptom” with MS where MS can cause crazy powerful emotions and sometimes random emotions to happen and you have no control over them.  I do think that was happening a bit–doesn’t happen that often but there have been times I’m pretty sure that’s what’s been going on–but most of it was that I HAD HAD ENOUGH AND I COULDN’T TAKE IT ANYMORE.

So once I cried, so many of my symptoms cleared up and suddenly the freeway cleared (I kid you not–different freeway but it was still noteworthy) and I was able to get home pretty fast and crawl onto my bed in the dark bedroom with the AC on and rest.  Boy did that help.  A LOT.

And fortunately I was a lot better after that.  I was just worn out.  My body was quite fatigued.

I feel blessed and grateful to say that I’ve bounced back from the episode pretty well today considering what I went through (still VERY tired), but I wanted to be honest and share with you what REALLY happened to me yesterday–what REALLY happens to me during my bad times.  Parts of me still want to keep this private but I think it’s better to be REAL about this because the SUMMER IS THE HARDEST SEASON for me.  It’s very hard to put this into words but I hope you have a little better understanding of what I deal with.

One day, one hour, one moment, one thing at a time…

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It’s An ’80s Kind of Day Part 10!

Posted on June 20, 2012 by Nahleen

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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Stream of Nahleen-ness

Posted on June 18, 2012 by Nahleen

*Today is Monday.  Yippy Skippy.

*I wish I felt better.

*I want MS and lupus to leave me alone.

*Cleo’s cute.

*I like Corey.

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

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

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

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

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

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

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

*WHO AM I?

*Why am I me?

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

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

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

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

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

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

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

*Stupid MS and lupus!  Go away!

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

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

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

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

*I’M SO TIRED OF LIMITATIONS!

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

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

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

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

 

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

 

 

 

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Moments of Peace Part 8

Posted on June 15, 2012 by Nahleen

FRIDAY FRIDAY FRIDAY!!  YEAH BABY!

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

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

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

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

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

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

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

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

06/08/12 Hey! That’s me at The Getty!

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

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

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

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

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

**And now onto the rest of the week:

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

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

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

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

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

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

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

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

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

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

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

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

HAVE AN AWESOME AND PEACEFUL WEEKEND ALL!

Categories: Moments of Peace/Pictures | Tags: , , , , , , , , , , , , | 2 Comments

Well We Did It!

Posted on June 12, 2012 by Nahleen

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

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

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

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

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

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

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

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

Categories: Uncategorized | Tags: , , , , , | 4 Comments

Focus: REST!

Posted on June 4, 2012 by Nahleen

Hi!  I’m back from my Rest-cation!  Hope you all had a good and restful week too!

I am so glad I took the time to rest last week.  Why is that so hard?  I mean, really.  Rest.  After trying to practice it even more these days, the word still seems unfamiliar to me–almost foreign.

I have been known to share with others that I feel “Rest is Productive”.  Do I really believe it?  Yeah, I guess somewhere in a little nook of my brain I’m starting to accept that.  Why?  Because after 2 years of being forced to do more of this strange concept called “Rest” (not to mention the other 8 years of supposedly “resting” my body with an MS diagnosis) I have found that I actually feel better when I do so.  Before my lupus diagnosis 2 years ago, I found that rest was only something I did because I had to and because it “kept me going” like the Energizer Bunny.  I don’t really know that it helped that much to be honest with you.  My head wasn’t in it.  That’s for sure.  Now I find that it actually helps me function better and get on with my day.

BUT I still only really REST when I have been kicked back on my butt.  So there I was last week on my Rest-cation thinking I’m totally getting this Rest thing down.  I mean, if you asked me before Thursday, I was SO RESTING.  Right?  Well, sort of but not fully committed to it.  Then on Thursday after I felt I had rested at home enough and wanted to get out and do things that might be restful for my mind, my body decided it really needed more REST–it was feeling AWFUL with terrible fatigue and pretty weak–and I had to LITERALLY get on my butt on the couch with my feet up and REST.  I mean, really.  Hadn’t I already been doing that?  I guess not as much as I should’ve been.

So I did just that.  I RESTED.  I didn’t have much choice.  I didn’t want to feel any worse.  I learned a valuable lesson too.  That lesson included an actual realization that even RESTING can cause symptoms in my body and that it isn’t all MY FAULT.  I didn’t do ANYTHING to make me feel worse.  It JUST HAPPENED.

That is huge.  Pretty much everyone I’ve talked to about my health has told me before that none of this is my fault and I have no real control over whether I feel better or worse and that sometimes these things really are RANDOM.  Go figure.  RANDOM.  I have 2 diseases.  They are going to act up whether I want them to or not.

I CAN ONLY DO WHAT I CAN TO MAKE SURE I DON’T EXACERBATE THEM FURTHER.

I CAN CHOOSE TO REST.

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I HAVE A CRUSH ON ACUPUNCTURE!

Posted on May 24, 2012 by Nahleen

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.

Categories: Appointments | Tags: , , , , , , , , , , , , , , , , , , , , | 4 Comments

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