Monthly Archives: July 2012

EVERYTHING IS AN EVENT: Grocery Shopping

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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Moments of Peace Part 12

Friday the 13th!  Hope you’ve had some GOOD luck today.

I wasn’t sure I felt up to writing this post today and then it occurred to me that I NEEDED to write this post because I NEEDED to be reminded of my Moments of Peace this week.  It’s been a rough week and I am looking for more reasons to smile.  I am so glad I do these posts.  They help me a lot!  Welcome to all my new followers and I appreciate all of you who read my Blog more than I can describe.  So, no more blah blah.  Let’s get to it!

07/06/12 My view in Brentwood Glen, CA. It is so beautiful in this little nook of the world. Look at that purple!

07/06/12 My view in Brentwood Glen, CA. I loved the trees in this area. And the sun was beautiful!

07/07/12 My view from the sun deck as day turns to night. Little grey puffy clouds. Just give me some clouds and I am happy.

07/07/12 My view from the sun deck as day turns to night. I can see some pinks in there.

07/08/12 My view from the sun deck as day turns to night. SO CLEAR AND SO BLUE!

07/09/12 My view from the sun deck as night arrives. Just a bit of a glow…

07/09/12 My view from the sun deck as night arrives. I love those city lights on a clear night!

07/10/12 My view from the sun deck as day turns to night. The sky was putting on an awesome show!!!!

07/10/12 My view from the sun deck as day turns to night. More of the wonderful sky show. There’s even a nice “sun dog” or rainbow-like prism near the bottom right corner.

07/11/12 My view from my balcony as late morning turns to afternoon. These feathery clouds caught my attention. They were the only clouds in the sky at the time.

07/11/12 My newest purple hair color!!!! This one is called “Plum”. It is my favorite purple so far. I LOVE IT!

07/11/12 My view from the sun deck as evening arrives. The clouds have a cool billowing effect. Really neat.

07/11/12 My view from the sun deck as evening arrives. Hello SUN!

07/12/12 My view on my walk in Beverly Hills, CA. The sun was trying to peak through a very stormy and haunting sky. It was kind of a creepy atmosphere outside and I felt it!

07/12/12 These lovely lillies were sitting tall and beautiful in a vase just outside a fancy florist and I just had to grab a photo of them.

07/12/12 My Cleo Kitty and I having a wonderful cuddle session. Look at those bright eyes! I love her so much!

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It’s An ’80s Kind of Day Part 12

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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When You Can’t Nap…

–snuggle with a kitty!

Yeah that’s right. I woke up early to feed Cleo Kitty this morning and was going to go back to bed to try to get some more sleep, but when I tried I didn’t want to and was quite awake. So I got up. VERY unusual these days. I figured if I got tired I’d take a nap later in the day.

Well that nap isn’t happening BUT snuggling with a sweet and cute Cleo Kitty is! She saw me get in bed and took full advantage. And so am I. At least I’m getting some rest right?

Keeping this post short and sweet because I’m still recovering from yesterday’s post.

Sooo, back to snuggling I go! She’s so cute!

(And she snores too!)

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

….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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