Posts Tagged With: multiple sclerosis

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 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!

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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.

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PAUSE…AGAIN

Posted on June 7, 2012 by Nahleen

I’m so frustrated! I feel crappy again today!

I want to feel better enough to be able to do more. It is so hard to have plans and keep them! I had plans today and yet again I had to pull out of them. I’m soooo tired of doing that.

I wish multiple sclerosis and lupus would go away and leave me alone!

I’m relieved to say that I don’t fight and push through things just to be able to DO them as much as I used to.

It might be healthier for me to wait and rest it out BUT it just means I have to

PAUSE…AGAIN…

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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.

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Motivation: SOLAR ECLIPSE

Posted on May 22, 2012 by Nahleen

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…

Posted on May 21, 2012 by Nahleen

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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