Posts Tagged With: Cambria

I’m On The Right Track Baby, I Was Born To Survive

Thank you Lady Gaga for those incredible words!

“I’m on the right track baby, I was born to survive.”–Wow. Profound for sure.

Lady Gaga’s song, “Born This Way” inspires me to get up in the morning. It helps me to keep on moving. It’s been over a month since I’ve posted anything and I think a lot of that is because I have had so much up here in my mind and yet not a lot of words or perhaps too many words to process it all. It’s been quite a month. We traveled to lovely peaceful Cambria again and were able to get away for a few days. I had a wacky week beforehand running around (as much as someone who doesn’t like to run and isn’t able to really run with MS and lupus can), then was on the trip and was able to take some deep breaths and let go, and then when I came back I crashed.

Life started getting really hard again when I was back home. The sun started getting more intense as June traveled through its days and the temperatures climbed higher and my body reacted right away to it. As I’ve mentioned so many times before, the summer is the hardest time for me. The heat makes my MS act up and the sun makes my lupus act up and they act up together and that creates what I keep hearing from everyone I encounter the oh so technical term and experience of a “Double Whammy”.

GOOD TIMES ALL AROUND.

Um actually…NO. NOT GOOD TIMES.

This has happened to me every summer since at least right before my MS diagnosis in December 2002. Summer kicks my butt. I feel like a different person. I wonder if everything has gone “kerflooey” with my body and this is it. This is the big bad ATTACK of all attacks and it’s a “loopty-loop rollercoaster” (phrase given to me by my fabulous Chiropractor last week and I’m stealing it because it is a perfect description) and I’m done for. Except…that doesn’t really happen. What happens is I feel crappy. I start to get the “heavies” a lot more which remind me of heavy fatigue that feels like a dental x-ray vest thingie from the ’80s and that to me is a HUGE reminder of RED FLAGS GALORE to slow down and pretty much stop EVERYTHING. That includes using my brain too much because even overstimulation is a problem. Plus I start to tingle more, my muscles get tighter and achier and have a harder time releasing, I feel more weak, I get the MEGA BLAHS, I just feel gross, my cognitive symptoms really start acting up more than ever and I have a hard time focusing and dealing with numbers (used to be so good at numbers and math in high school and college and THANK GOODNESS I didn’t go into Accounting or something when I was being encouraged to because I’d really be at a loss now), I most often feel like the life is being sucked out of me and I could go on. Then I have these “better” times where I feel like I could get through. I still don’t feel as good as when all temperatures are cooler and my body finally has a real chance to cool down but there’s a calmer plateau to land on for a bit. Then it starts up again and it’s not usually the same as before but different so I have no idea what’s going on EVER.

The point is, life with my poor inflamed body is EXTRA EXTRA HARD.

EVERYTHING TAKES SOOOOO MUCH MORE EFFORT.

ACK!

So right now I’m trying to keep things more simple. Ha! Turns out life is still happening and things still need to get done but I need to go with what my body needs and the lines get blurry there. What does my body need? Does it need more rest? Does it need my mind to stop worrying about how I’m feeling and get a break? Does it need to be cooler? Sometimes it doesn’t like the cooler temperatures because then the lupus starts acting up more and making my joints hurt. Sooooooooo, I’m constantly stuck between a rock and a hard place and there is always a compromise of sorts. There is never a time my whole body (including mind) are happy.

And that’s why I share this Lady Gaga song with you. So much of this song is about acceptance of self. And what’s even more interesting about her is that lupus runs in her family and there has been so much talk that she has lupus but she says it’s borderline lupus. Who knows what that means but to me this song means even more because maybe just maybe she might GET IT.

This video may be just a BIT, yeah JUST A BIT, theatrical and over the top but the words say it all. The message is so clear.

I AM WHO I AM AND I NEED TO LOVE ME.

I’M BEAUTIFUL…I’M ON THE RIGHT TRACK (even if it doesn’t feel like it right now)…AND I WILL SURVIVE.

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Victory!: Cambria!

We’re home.  We’re back from Cambria, CA!

We had a wonderful, peaceful, soothing, gentle and adventurous time!  It was so good to get away for a couple of days with Corey and spend some time together–just us.  It has been years since we have been able to do that and I am sooooo happy we did it.

WE REALLY DID IT!

My lupus and multiple sclerosis behaved for the most part.  I had some weird symptoms showing up here and there but for the most part I think I felt better because I was so relaxed and distracted.  My walking every day has really helped in the long run when it comes to my ability to walk around and explore new places and my ability to stand for long periods of time.  I do still get store fatigue but I could stand quite a bit and what was interesting was that the sun didn’t bother me too much until the later afternoon.  The temperature was definitely cooler than LA especially at night but even during the day the temperature might have gone to 60.  Glad I was given a chance to be in cooler temperatures because it sounds like LA is going to get hot over this next week or so.  Blech.  But first things first and one day at a time I’ll make it there.

There was a jacuzzi spa jet tub in the room so that helped my body immensely.  I think if I had one of these I could get into every day my MS and lupus would be very happy.  I’d be getting that massage I needed daily.  Oh well.  One day.  I can dream.  We were also able to get massages before we left to drive home which were lovely.  There was a boarded walkway from our hotel, through the trees and towards the beach.  Wow!  What an amazing walk and sunset that was.  I tell ya.  There’s nothing like hearing frogs and ocean waves at the same time.  I don’t think I’ve ever experienced that.  And the sunset was magical.

The people there seem happy and are incredibly friendly.  We had a conversation with each local we met.  They were so welcoming.  I think perhaps it may have been partly because the economy has been way down since last November but I also really believe that this is how they are in general.

I have lots and lots of pictures to share with you soon once I get them loaded.  This trip came at THE PERFECT time…as my life is hitting the next turning point…there is no mistake we took this trip when we did.

And to finish, I’ll say that years ago we headed north from LA to San Simeon to see Hearst Castle and that was neat.  Hearst Castle is quite an experience.  What a view from up there.  That night we traveled a bit south to see what was going on in Cambria since it seemed like there was nothing happening in San Simeon.  It was dark and the businesses were only open for a few more hours.  Those few hours made a great impact on our lives and we knew we had to come back someday.  Well that someday came this past weekend and after being there for less than 48 hours I can honestly say it has now made an imprint on my soul.  May sound hokey but I believe it’s true.  Actually, I know it’s true.  What a beautiful, spiritual and peaceful place.

UH OH!  I HAVE BEEN BITTEN BY THE CAMBRIA BUG!

I can think of worse things…can’t you?

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CAMBRIA HERE WE COME!

YIPPEEEE!!!!

Heading to Cambria today at some point when we can pull ourselves together! We have reservations at a spa/hotel/resort in a room that has a king size bed, jacuzzi style tub with spa jets, a fireplace, a pillow top bed, a spa to get massages and facials, supposed live entertainment on Saturday nights, a luxury continental breakfast in the mornings, a walkway that connects to a boardwalk that leads through a State Park straight to the ocean and the list goes on and on! I can’t wait!

Yesterday was the kind of day that went really well in the beginning and it all flowed really well and then about halfway through after making a business call it sank and it sank fast. I don’t want to get into it but this trip has come at the PERFECT TIME!

Not only is Cleo Kitty doing quite well (and we have a lovely lady coming to watch and stay with her who has bonded with her in the past which I tell you is a VERY RARE THING if you’re not Corey or myself), I am feeling much much better from taking care of myself and going to the doctor and taking antibiotics that IMMEDIATELY kicked that infection’s buttinsky and from the storms happening last night that ACTUALLY INCLUDED ONE HUGE BRIGHT FLASH OF LIGHTNING AND THEN A HUGE CRAZY CRACK OF THUNDER RIGHT OVERHEAD (which is VERY RARE AND EXCITING IN LA) so that helped me get some physical relief, I’m actually feeling up to taking a road trip (WHOA! LOOK AT ME GO!–haven’t been able to plan a road trip or trust that I could do one longer than 2 hours and that was pushing it…for AGES it feels like), I’m going with Corey and I can’t remember the last time we got away just the 2 of us to a place that wasn’t connected to anyone we knew (don’t get me wrong I love my peeps but we need some REAL TIME AWAY), and well IT IS JUST TIME.

So off we go at some point today. Part of this whole trip is the road trip. We will get there when we get there. I used to love road trips with Corey. We have the best time if we just go with it. I keep thinking we should be hurrying up and leaving now but then that’s not either of our styles to be honest and that would kick my already emotionally fragile lupus and MS butt that has made my physicality a bit fragile too today. So when it’s meant to be that we go, we go.

To be honest, after that phone call yesterday regarding YET ANOTHER BIG LIFE DECISION (HAVEN’T I MADE ENOUGH OF THOSE LATELY!? A GAL NEEDS A BREAK HERE AND THERE!), if I wasn’t already getting away and planning on running away anyway to try to relax and clear my head, I would’ve run away anyway. I have mentally had ENOUGH!

So enough of this writing chatter. Gotta get back to my self care so we can get the heck outta here.

THE ONLY DOWNSIDE?

… (sad face here) Leaving Cleo Kitty. I haven’t left her since the whole “cancer” episode (I say that because she is so resilient and awesome that she doesn’t seem to have cancer (really long story–but she does have some other serious health problems and sensitivities. Never did get a definitive diagnosis because she’s a kitty and didn’t need to be more traumatized than she already was for goodness sakes) and that was in December 2011. We are quite attached to each other and have been each other’s caretakers since then. So as much as I know it is for the best, it will still be hard. But we will be back Sunday night. And I have to remember that the fact that we can even leave her at this point is amazing. In November we had planned a similar trip to celebrate 15 years together and 6 years of marriage and had to cancel it because her health was so questionable and we couldn’t leave her. Now I look at her and it’s hard to believe that happened. She’s so in the mood to keep living and we finally got to the bottom of her health stuff too so that’s good.

Anyway, I keep babble-writing. Off I go!

Write soon!

Oh and to my new followers HI! Yay! Thanks for joining me on my crazy path. To my commenters–yay thank you for commenting! I plan on responding next week.

Have a great weekend y’all! I know I am not the only one going through this thing we call life and holy moly it can be hard and intense…

Love to all!

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THE COUGH DECIDES TO START NOW?!?!

I’M COUGHING TODAY?! TODAY?!

I’ve been waiting for and fighting off something like a sick bug that I could feel trying to start for what seems like 2 months and it has worked. I have held it off. AND TODAY IT WANTS TO START GETTING BAD?

UM HELLO! COREY AND I ARE TRYING TO GET AWAY THIS WEEKEND TOGETHER TO GO TO CAMBRIA!

We’re overdue for it. This is supposed to be to celebrate 15 years together (actual Anniversary was in November) and 6 years married (in November too). We weren’t able to go because our poor Cleo Kitty was sick and I don’t blame her for that.

And all has been going pretty well with my health (I mean ups and downs and IBS stuff yesterday if you read my Blog post about that–it’s better if you’re wondering at least for the moment) and it’s been pretty manageable till NOW?!

NOW?!

I TRIED not to have any expectations about whether we would really take this trip but of course I have some. Of course I’m feeling like I should go into CRISIS MODE and think EVERYTHING’S OVER.

I should just crouch in a dark corner and not come out for goodness sakes. I mean, if the cough has started on Wednesday, how can I be better enough for Friday? I know how my cough is. And how can I get those “things” done I think I HAVE to get done in time for then?

WHY ME? WHY NOW? DANG IT!

So action time it is. No not running around like a wild mess (just…yet…anyway…). I got up, called my doctor and have made an appointment for 2:15pm. HOW COOL ARE THEY TO BE SO AVAILABLE? Oh and I get to see my favorite PA there too so another positive. I’m moving in the right direction. It is currently 12:45pm. I have to finish up writing this ASAP (and that’s true) so I can shower (always a big event for me with MS and lupus and now this dang sickness that’s coming on that has also turned into a fever–OK 99.1 but for me that’s a fever no matter what ANY doctor says) and drive over there and get to the solution ASAP. I have been told time and time again and even lectured by my doctors to not play with my cough. I have asthmatic tendencies that could EASILY turn into full on bronchitis or pneumonia especially with a messed up and compromised immune system so I CANNOT (emphasis on the NOT here) play with this. There is NO WAITING. If I feel a cough I do my best to get to the doctor ASAP.

And I have more of a MOTIVATION. Let’s kill this now. NOW.

DID I SAY NOW ENOUGH? You know, as if I have any control over a sick bug…..

Ha ha ha. Yeah right.

But I will do what I can to kill it.

Earlier this year I declared it was the year of OPERATION NURTURE NAHLEEN 2013!

Well…this is it.

OPERATION NURTURE NAHLEEN IS IN FULL EFFECT!

……….

P.S. I will do my best NOT to go past the NOW, not to go past TODAY and NOT to jump into the FUTURE which is only an illusion ANYWAY.

GOLLY I HOPE THIS HELPS AND WORKS.

I really really really really really (I can’t stress the reallys enough here) wanted to get away for a few days. THAT’S ALL. I haven’t gotten away in so long.

PLEASE.

I guess I’ll be flip flopping between Crisis and Operation Nurture all day. Suppose I’m human right.

Hmm. Interesting.

I’m a HUMAN…

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