Posts Tagged With: MS

Motivation: SOLAR ECLIPSE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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The Many Shades of…

Life?

Feelings?

Disease?

Lupus?

Multiple Sclerosis?

Thoughts?

Realities?

Colors?

Greys?

Emotions?

Me?

ALL OF THE ABOVE.

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

THAT IS LIFE.

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

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

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

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

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

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

And the many shades continue…

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

Enjoy!

 

 

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Diagnosis Part 4: “9 Times Out of 10”

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

Wrong.

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

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

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

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

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

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

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

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

 

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

 

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

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Not a Happy Nahleen This Morning

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

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

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

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

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

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

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