Posts Tagged With: lupus

Smartypants

Posted on July 25, 2012 by Nahleen

Guess what??

I saw my cute Neurologist today annnnddddd:

My multiple sclerosis is STABLE!

Great news!!! Turns out the lesions I have are the lesions I’ve had FOR-LIKE-EVER and they’re not active! No new ones to speak of. Just the ones that seem to have taken permanent residence on my brain–you know–for kicks and memories I guess. I won’t lie. I sure would like those old lesions to get the heck on out of my brain, BUT I’ll take what I can get.

As my doctor says, “Guess what? You have a beautiful brain!”. Hmm. Thanks…I think?

He’s also pretty darn thrilled with my physical improvement since I first met him almost 2 years ago and he gives me and the oral MS medication, Gilenya, A LOT of credit for that. As for Gilenya, there was a time earlier this year that he was worried about the reports of deaths while on it. Turns out, none of those deaths look like they are connected to Gilenya AT ALL (so sorry these people died BUT so relieved to hear it wasn’t Gilenya) and if there’s even a hint of a connection, they have nothing to do with my clinical make up and he is VERY HAPPY to keep me on it! Well OK then!!!

This Neurologist continues to be my favorite Neurologist so far which is saying A LOT since I have had crappy luck with these specialists in the past and I think he’s my 9th Neurologist in 10 years. It’s not just because he’s cute either. REALLY. No really. He’s knowledgeable, patient, compassionate, takes the time to talk to me, answers ANY and ALL of my questions, asks me about ALL of my health issues because he believes his MS patients can’t be truly healthy without taking care of the WHOLE body, his Assistant rocks it in the Assistant Department (and could give classes about how to handle Patient and Doctor demands), he responds very quickly to phone calls, he’s personable and quite humorous, pays attention to detail, he was very understanding when I had to cancel an appointment due to being sick, he’s proactive, and apparently he’s one of the top MS Specialist Experts in the country. You’d never know that from him. He doesn’t talk about that at all. I hear it from his colleagues (all the other doctors I see who work with him). Oh and did I mention he used to be a JAZZ MUSICIAN in a past life??? How crazy is that? How does that happen?–First a Jazz Musician, then a Doctor, then a Neurologist, then an MS Specialist??? When I asked him about the connection, he said, “I’m a Nerd.”

My clinical neurological tests during the exam went okay. I think I had some issues. He knows I’ve done those tests a bazillion times so he tries to trick me and ask me what I ate a week ago (not last night or this morning but a week ago). He tries to pull questions out of thin air and ask me what I don’t expect. When I answered the spelling of “orange” correctly (kinda hard to spell with your eyes closed–you should try it), he said, “OK Smartypants. Let’s see what else you can do”–and after he had me do a few more tests he told me to spell “orange” backwards…and then giggled about it. Yeah ha ha. Thank goodness I’ve always been a good speller and visualizer. Now you try spelling orange backwards with your eyes closed. HARD RIGHT????

So that’s that. My MS is probably just acting up because it wants to and because it’s been hotter. AND it takes nothing for me to get hotter when it’s extra sunny. And wouldn’t you know, he says I have a case of the “Double Whammy”…hmm…sensing a theme here. Isn’t that what my Rheumatologist said about lupus and MS last week???

So to end the appointment, he told me to “stop being so hard on myself.” He pointed out that I have multiple sclerosis AND lupus. Enough said I guess. I don’t know why that can’t stick with me more and I can’t accept that as ENOUGH.

Guess I just want to live a “normal” life WITHOUT multiple sclerosis and lupus.

BUT since that doesn’t seem to be in my near future (an obliteration of any disease at this point), I’ll continue to practice this “RESTING” thing that is all the Rage with doctors these days and TRY to be gentler with myself.

I’LL TRY.

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Double Whammy

Posted on July 19, 2012 by Nahleen

I have multiple sclerosis.

I have lupus.

Double whammy.

Not only do I have 1 disease but I have 2. It’s the summer. It’s REALLY sunny. I don’t know which disease (or it could be both) is acting up in my body or why but I do know that I don’t feel good and symptoms are starting to flare up. I was told by my Rheumatologist today that because I have both diseases I may never feel “good”. There will probably always be something happening in my body to cause me discomfort.

Now I know things are never for sure for any reason. Experience tells me that only time will tell what really happens or doesn’t happen. I went almost 8 years believing I only had MS and how I felt was “the way it was” until I was finally diagnosed with lupus 2 years ago and I learned I could feel “A LOT BETTER” than I had been feeling. And you know it’s true. I feel a lot better today than I did 2 years ago. Absolutely. Thank goodness and I am very grateful for that.

BUT…my doctor pointed out that I have been on a physical plateau for awhile and since it had been awhile she was thinking that may be my new baseline. Well OK–but NOT OK. So what happens from here? Isn’t it the unknown that’s so scary? Isn’t it our heads that freak us out too? I hear this and I start thinking, “Well this is it. This is all I have. I don’t ever get to feel better.”–but then what is there if I live with just those thoughts?

AND it’s back to one moment at a time, one hour at a time, one day at a time–whatever it takes to keep the “time” idea really simple. Because right now the summer and the sun are fogging my perspective and making me think that there is a LIMIT TO HOPE. I DON’T BELIEVE THAT! I have a wonderful husband, I have an adorable kitty, I have amazing supportive friends and family, I have a roof over my head, I have AC (THANK GOODNESS!), I have a great car, I have clothes, and the list of HOPE goes on and on.

BUT–I can’t mask it.

I am really struggling…

I’ve been very confused lately. I’ve been functioning better, able to exercise more, be a bit more active, I feel stronger, but YET I still have really bad fatigue, pain is coming back in my joints and especially my hands, I’m getting weird rashes, I get to the point in the day usually where I CRASH and my body is all done, I’m starting to have digestive issues again and I DON’T GET IT! What’s going on with me? Am I getting worse? But I thought I was better? How will I know when the weather is wacky and I’m so darn sensitive to it? And how can anyone really figure out which disease to treat when both diseases have been known to act up exaggeratedly during the hot times of the year????

My Rheumatologist and I had a very in-depth conversation about all of this today and that really means a lot to me that she took the time to talk and listen with me for quite awhile. She was understanding and compassionate but also very direct and to the point and not too harsh about it. I have MS. I have lupus. Double whammy. She confirmed that it’s going to be really hard for me. Will I be able to work again? What will I do now? What can I do now? She’s not really even sure that I’m much better than I was 6 months ago, it’s just that “THINGS ARE DIFFERENT” and so this probably really is my plateau. Perhaps I’d feel much better with only one disease (you know, as if only 1 of these diseases is a cup of tea–they’re all sucky)…but that’s not the case.

REALITY TELLS ME I HAVE MULTIPLE SCLEROSIS AND LUPUS.

Reality HITS me these days. This is it. This is my life. Yes I could be a lot worse. Yes I could be a lot better. But the truth is, I don’t feel good. Will I ever feel “good”?

I will do my best to have hope but right now I AM TRUDGING and the muck is really thick and it is very easy to feel stuck…

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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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The Downs and Ups…the downs and ups

Posted on June 28, 2012 by Nahleen

–…ARE THE HARDEST PART…

Multiple Sclerosis.

Lupus.

Down.

Up.

Unpredictable.

I pick myself up.

I go down again.

I’m tired.

I can do this.

Maybe not.

I can try.

Blah.

Awake.

I feel heavy.

I feel clearer.

Can I even do this?

Oh hey! Look at me go!

Thursdays are my bad days now…

But Wednesdays used to be!

I’m starting to dread Thursdays…

But I made it past Wednesday right?

And the autoimmune disease pendulum just keeps on swinging…

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It’s An ’80s Kind of Day Part 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!

Categories: '80s | Tags: , , , , , , , , , , , , , , | 4 Comments

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

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