Posts Tagged With: MS

My Relationship with the Sun

Posted this on my Facebook Page Nahleen.com and thought it was perfect for a Blog post for today.  What came out wasn’t really intended which is why I think it’s worth the Blog post.  It hit a personal spot I didn’t know existed.  I love it when that happens!

 

SO HERE IT IS:

 

“Today is quote day I guess:, “Truly the light is sweet, and a pleasant thing it is for the eyes to behold the sun.”–Ecclesiastes—this feels really touches my heart because I absolutely love the light and really became friends with the sun especially when I was diagnosed with MS 10 years ago…we were best friends. Yet I always wondered why I felt weird in it and I couldn’t place it. I just thought it must be the MS…yet it was the sun that helped keep me sane. I truly believe that. The more I was outside, the more fresh air I got, the better I felt mentally. I wasn’t nearly as claustrophobic. But then I found out I had Lupus 2.5 years ago and EVERYTHING changed. I had to get out of the sun. I had to get away from it. Turns out it was really harming me too and that’s why I felt “weird”. I really grieved the LOSS of my contact with the sun especially that first year after my lupus diagnosis…it really did make me feel worse, especially because my body was so flared up and inflamed…now I wear sunscreen every day, hats as much as I can handle in the sun, sun protective clothing and it really helps…but it still bothers me. Turns out my relationship with the sun had to change and will probably never be the same again and that’s great for my physical health and a lot of my mental health because there is relief when my body is in darkness and I don’t have to mentally fight so hard to deal BUT IT IS SO HARD TO FULLY LET IT GO. So I take it one day at a time. And when I can get time with the sun I take it…even in small increments because I can’t cut it out totally…it is a part of who I am…guess it really teaches me how to deal with any relationship…”

Thank you all for being here.  You’re really helping me figure out who I am!

 

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DUDE!: 85 degrees in Los Angeles, CA on March 1st?!

I mean I get it.  I live in a desert.  Los Angeles, CA is a desert.

BUT COME ON NOW!  85 DEGREES IN WEST LA on March 1st?!

GROSS!

I read today that today is the first day of Meteorological Spring.  Did LA skip any kind of spring and jump right to summer?!

Um, my multiple sclerosis and lupus are very mad at you weather.  They have been in a snit for the past few days anyway because it’s been in the 80s but today was just too much.  The sun has also been crazy intense and we aren’t even in the summer months yet.  Plus you jumped from 65 to 80 within a few hours and haven’t dropped below 80 during the day for a few days.

What happened to rainy season?  Are we not getting it this year?  That’s so uncool too.  We already basically live in a drought day in and day out.  We never really get the amount of rain we really ever need and I just heard that yesterday there was a brush fire in Riverside.  Now granted that’s pretty far away from where I live but it tells me we are in big ole trouble this year if this continues.

So this is the part where I start being really sappy nice to you weather because I mentally love you and am fascinated by your whole being.  Can you bring the temperature down about 15 degrees???  I think 70 is fabulous with a light breeze and some cool white puffy clouds in the sky.  Just lovely.  Some birds chirping would be nice too but I digress.

PLEASE PLEASE PLEASE don’t last 85 degrees.  I get enough of those days during the very long LA summer and have to deal.  But March 1st is really hard to deal with.  It puts a whole damper on me and my life.  The sun and heat fatigue start and well that’s just yucky…

OK?!  ARE WE COOL?  CAN WE COME TO A COMPROMISE?

I’ll even deal with 75 degrees.  That’s OK too.

Just some thoughts…you know.

I hope I wasn’t too rude earlier.  It just gets me upset when I’m too hot and too sunned and it takes NOTHING for me to go there and then I get cranky and I don’t like that.  An un-cranky Nahleen is better.

SOOOO YEAH.  I guess I’ve stated my case.

Hope you listened, understand and can help me out…

THANKS!

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301 DAYS! That’s How Many Days…

–I’ve walked in a row!

I can’t believe it! I have walked 301 days in a row. I am not kidding. I have been keeping track since I knew that I might be able to make it walking day by day.

I’m so excited! If/When I make it to a full year I will have to call/send a thank you not to my Physical Therapist who spurred me on last year in the first place. She told me just to walk. That walking was THE THING for me to do in my situation with MS and lupus. There was no question. I needed to walk. What did that entail? That entailed not judging myself by how far I’ve walked or how long. That I just needed to make it a point to walk. Seriously, she told me, I don’t care if it’s just a few minutes. If you don’t keep your legs moving you will be in trouble. Your MS and lupus will get the best of you and you may find one day that you can’t walk or that they are just too stiff and you may not have the motivation to do what you need to do–WALK– and to keep on keepin’ on.

So that’s what I’ve been doing. How do I do it? Well I walk near where my doctor appointments are. I walk in my apartment around and around if I have to. I have a walk dance I do that must look really cute. I walk around the block near my apartment. I walk at the mall I’ve gone to. I walk around the museum I have a membership to. I walk/march to a TV show I’m watching.

I WALK.

And my legs are so much better than they used to be. Sure there are days that my legs think I must absolutely be kidding them but they usually thank me in the end. In the beginning it was much harder because it felt like when I was walking that I might be causing some damage. That there must be days I shouldn’t be walking at all and I should rest them.

NOPE.

I am now more confident on my feet, I feel stronger, I have more endurance, I can walk longer distances and handle hills better, my mind and head get some de-stressing and meditation, I get to see outside and be with the world and the earth, I get to move my whole body, I can participate in more events, I can stand in line at supermarkets longer, I can handle my life better in GENERAL.

And that’s because I WALK.

And now I don’t know how not to walk during my day. I think I would be lost without walking. My body asks me for it and reminds me if I don’t do it.

SO I WALK AND I WILL CONTINUE WALKING NO MATTER WHAT AS LONG AS MY BODY ALLOWS ME.

So tonight as I think about what is frustrating me, I will turn my mind to the positive things going on in my life and one of the main parts of my life is that I WALK and I have WALKED 301 DAYS IN A ROW.

A TRUE MIRACLE and I am absolutely grateful to have met a woman, my previous Physical Therapist, who was able to get the message through to me in the right way.

JUST WALK. DON’T PUSH. JUST WALK. DON’T THINK TOO HARD. JUST WALK. DON’T JUDGE. JUST WALK.

Well, turns out she might just be onto something.

I think I’ll continue to do just that.

WALK!

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GO AWAY LUPUS AND MULTIPLE SCLEROSIS!

DO YOU MIND BODY?!

I’M TRYING TO HAVE A LIFE HERE.

GO AWAY LUPUS, MULTIPLE SCLEROSIS, IBS, SINUS ISSUES, SENSITIVITIES TO EVERYTHING ELSE IN THE WORLD IT SEEMS LIKE! I’M DONE WITH YOU TODAY!

Of course, I’ve been done with you before you even started but I don’t want you here. Can’t you see I’m busy? Can you see I’m trying to expand my life? Can you see my mind’s busy? Yeah, I know that you get tired of my busy mind but I have given up and changed so many things in my life for you. MY MIND IS SOOOOO LESS BUSY THAN IT USED TO BE AND YOU KNOW IT BODY…

WHY DO I HAVE TO GIVE UP MORE TODAY?

ENOUGH!

Sure, I’m better than I was a year ago or perhaps even 6 months ago. Well that’s all good and I’d like to celebrate but not today.

I DON’T WANT TO CELEBRATE!

And if I did celebrate would that wear me out too? Would my butt still feel like it’s kicked? Would my hands still hurt while typing this? Would any activity take the wind out of me before I even really started it?

YES there is weird different weather happening. I HAVE NO CONTROL OVER THAT. It was 85 in LA for 2 days and then just warmer in general and now a big COLD storm is coming which I started feeling a week ago and my body is CONFUSED!

OK. WELL CONFUSION DOESN’T MEAN I HAVE TO STOP EVERYTHING!

LEAVE ME ALONE!

HOW DO I EXPAND MY LIFE WHEN YOU KEEP GETTING IN MY WAY?!

Sure I just had 2 doctor appointments last week and both doctors said they thought I was so much better.

BETTER….

BETTER….

CAN SOMEONE PLEASE TELL ME WHAT THAT MEANS EXACTLY?

BETTER….

Yet here I am with my butt feeling kicked again and feeling CRAPPY. What’s weird about today is that I’m having symptoms that I CANNOT DESCRIBE. I guess I just need to call them WEATHER SYMPTOMS…

AND THIS IS ME! I’M A WEATHER GEEK FOR GOODNESS SAKES! I LOVE THE WEATHER! I WANT TO BE FOCUSED ON THE EXCITEMENT OF THE IDEA OF “YAY!” WEATHER IS HAPPENING IN LA! HOW COOL IS THAT?!

Not.

Cool.

When.

I.

Have.

MS.

And.

Lupus.

………………………………

And yet somehow I just keep on going and am able to write this. I had to get it out. I’M SO FRUSTRATED! And the world keeps turning despite how I feel. And I look out the window and watch as people go along with their day…and they have NO IDEA what I’m going through and I have NO IDEA what’s happening in their lives.

AND LIFE GOES ON.

And yes I will be excited about the weather.

BUT.

The

MS

And

Lupus

Will Still Be Here With Me Through It All…

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A CLEAN MOUTH OF HEALTH!

OMG!  No WAY!

This is the second time in a row that I have gone to the Dentist and been told that my mouth is doing really well!  HOW COOL IS THAT?!

See with LUPUS and lupus medications, I have had a tendency to have dry mouth syndrome (I know there’s a name for it), swollen gums, bleeding gums, sensitive teeth, a sensitive or swollen tongue (TMI I know), cankers and just a whole bunch of IRRITATION!

Well lately I’ve been thinking about my Dentist appointment coming up and have realized that I have not been thinking about my mouth lately.  Now isn’t that a weird sentence for ya!  Funny how that is.  I have been thinking about issues and symptoms in my mouth for years…EVEN BEFORE THE LUPUS DIAGNOSIS IN AUGUST 2010.

SO YEAH.

All is CLEAN AND WELL IN NAHLEEN’S MOUTH!

That may have been more than you needed to know but I’m happy to share it because right now, any good physical health is a huge VICTORY for me these days!

The ONLY REMINDER I got from my Dentist is to be really careful and pay extra attention to my Wisdom teeth (yes I still have ALL 4 OF THEM!  If only I was more WISE from them…) because that’s where all the problems can really start since they’re so hard to get to.  I get that reminder every time so it wasn’t a big concern.

SO HOW COOL IS THAT?!

I NEED MORE APPOINTMENTS LIKE THAT!

I was so up from that good news and appointment that I found myself eating lunch at the Veggie Grill using a gift card given to me by an awesome friend, and having my favorite B-Wing Salad (if you haven’t tried you have got to!), then driving to Santa Monica beach so I could pick up some purple hair dye and stock up at a new store (of which I LOVE and had no idea about–thank you SIRI on my IPhone–you may be creepy but you helped a lot today), ended up purchasing some special muscle soak bath salts that are all natural and stopped by a Jamba Juice to try to get some extra nutritional needs taken care of since I’m going on a special diet prep for a special Hydrogen Breathing Test on Thursday.  Needless to say Wednesday will be weird, hence the dying the hair purple to pep me up for Thursday’s “UN-FUNNESS” of no eating and no meds till after the test that may take over 3 hours (YIPPY SKIPPY), and nurturing the body because lupus and MS can get very irritated from being so OUT OF ROUTINE and depleted of all things to take care of it.

I also found myself driving along the coast and parking very easily at a spot along the street with my Handicapped Placard (best part about having one is parking and not having to pay for meters or worry about time constraints unless they’re Street Sweeping–learned that the hard way years ago) and walking down the stairway (COULD NOT HAVE PLANNED THAT BETTER), only to find myself walking out onto a WALKWAY halfway onto the beach and then straight towards the ocean.  It was a cloudy cool day so hardly anyone was there…THAT IS EXCEPT 2 DIFFERENT PHOTO SHOOTS (one of them may have been a music video–so WISH I knew who those 2 different women in different locations were with their whole entourages) and lots of birds taking advantage of the absence of weird human creatures.

Once that was done I dragged my satisfied self (getting tired by then but so happy to be taking care of myself and things just so wonderfully falling into place) to the grocery store to get some regular groceries and other items to help me get through the strange diet menu I need to have tomorrow to Prep for that Thursday test.

SO ALL IN ALL.  A pretty good day even if I do say so myself and I DO!

Was also nice to see that our Cleo Kitty was doing better since this morning because this morning she got sick I think from eating her food too fast and that always worries us with her health issues.  She seems to still be recovering but is much better I think.  Was probably good for me to get away and leave her alone so she could get some REAL rest but BOY was she HAPPY TO SEE ME AND I TO SEE HER.

I LOVE MY CLEO KITTY!

OK.  Time to unwind…

It’s nice when days fall into place.  They rarely do that with such ease and I’m going to take the time to enjoy that…

AND BREATHE…

RIGHT NOW.  DID YOU BREATHE WITH ME?  YOU SHOULD TRY IT.  MAKES A BIG DIFFERENCE.

That’s even better.

Hope you all have had a good day too!  We all deserve more of those!  Write to you soon!

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 3

…and BE ME…

…and HAVE LIMITS…

I mean, let’s face it.  I’m a hard person to be.  I have goals.  I have ambitions.  I am a Go-Getter.  I am a Type A Personality by Instinct. The first idea in my head is GOGOGOGOGOGOGOGOGO!!!!

There’s no room for LIMITS…

Hmmmmmmm……

Welllll……

That’s really hard to deal with when I have multiple sclerosis and lupus.  I’m not even mentioning the digestive symptoms and syndromes, food allergies, environmental allergies, any infections that I might be fighting off, the fun womanly once a month irritations, sinus symptoms and issues, my crazy GOGOGOGOGOGOGO head, or even headaches that might come and go here and there.  I mean really.  I don’t get a chance to GOGOGOGOGOGO.  And if I do by chance get back into that habit, I am in TROUBLE and back on my butt FEELING AWFUL FOR SOME REASON…

UGH…

Sure that’s probably a really good thing.  Actually, it’s a blessing that I am grateful for quite often.  I’m grateful that I have to take it slower and actually see my life go by.  I don’t get a chance to be sprint through it.  I get an opportunity to get to know myself (scary sometimes yet really nice to do), to get to know others out there in the world who are cashiers and other customers for example, to smell the flowers, to really take care of my plants, to love on my dearest Cleo Kitty, to sit and just BE (so hard sometimes), to take my time, to look at the sky, to watch the world, to take a few extra breaths and maybe even DEEP BREATHS here and there…

BUT I WANT THE CHOICE to GOOOGOOOOGOOOO…or Do I?

I really have no idea.

I just don’t like having multiple sclerosis and lupus.  That’s just it.  I can’t stand them.  I want them to go away.  If I’m not careful I get sucked into a black hole of “Why me?” and “What did I do to deserve this?” and “Why won’t they just leave me alone?” and the list goes on and on…I think I could go on forever in what I call “WHOAISMS” and sometimes I believe I’m allowed to do that.  But I hope I have something to pull me out and I usually do.

So then I need to really work on spirituality whatever that means to me that day.  I could be meditating.  I could be actually letting myself sleep if my body and schedule allows.  I could be looking at the flowers.  I could be beating on my Bongos.  LOVE THAT by the way!  Seriously, if you have anger, I suggest you find something to beat on as long as it’s not yourself, or another living being, or something you’re going to damage—hmm….maybe I shouldn’t have mentioned to find just anything to beat on.  For a long time I’ve used the Hulk Hands that are out in toy stores that Corey has bought me (the first pair really was the best) that actually had Hulk’s voice and yelled, “Hulk Smash!” and would growl so when I put them on I got to laugh and feel big and strong and punch the wall.  I don’t recommend punching a wall without that kind of cushion.  PLEASE BE CAREFUL WHATEVER YOU DO.

But then now I have these Bongos and that’s great but I can’t just jump in and do a long set of banging.  I have to pace myself and only do it a few minutes at a time and build up to longer because then my hands and arms hurt.  Well, that’s just great.

So that’s what I mean, I’m always putting limits on myself and what I can do but in TRUTH: THERE REALLY ACTUALLY ARE LIMITS.  I’d like to continue to be able to use my hands and arms which are the most affected by both my lupus and MS and I’d also like to not feel the pain and throbbing from having overused them…on the bongos that I just enjoyed banging on to help me relax and calm down…

Then there’s the exercise.  Exercise is great to keep me flexible and stable.  Yay.  Go me.  Notice I’m not too excited about it.  Some days it feels like real work and like my body is complaining the ENTIRE TIME.  Then other days my body is thrilled and wants to be stretched and moved even more.  But again, there are actual limits if I want to keep functioning.  It is cumulative.  However, WALKING HAS BECOME MY THING.  I am well on my way to having walked 300 days in a row by the end of February.  AND THERE IS A LIMIT TO THAT.  I need to NOT JUDGE myself about walking and what I did that day.  I need to not push myself to walk an hour every day.  I need to be willing to only even walk a few minutes if that’s all I can do.  The TRUE BENEFIT comes out of keeping my legs and body moving and honestly, it’s helped my mind immensely too.  I have so much more confidence now than I used to in general just because of walking but they have truly loosened up and become more stable, strong and can endure more.  They DON’T complain that often anymore.  And by now it’s become such a habit to take a walk that I can’t imagine my life without it.

But then there’s trying to have a life.  I know.  Crazy.

A LIFE.

You know, that life where I can socialize with people, maybe even have some real friends out here in LA, maybe even keep in touch with the friends and family at a distance, spend more time with my husband, get out into the world and do things besides grocery shopping (although that is important too), and doctor appointments, and medical tests and be on the phone with something regarding Disability, Medical Insurance, following up with doctors, finding an attorney for a legal issue, filling out paperwork and the list goes on.  And what about being creative?  I yearn to be creative but I can’t do too much OR I have to slow down and my body asks for it.  But when will that happen?

WHEN AM I DOING TOO MUCH?  WHEN IS IT WORTH IT TO PUSH IT?  WHERE IS THE LINE?

There is no pattern or predictability.

Again, the worst part about these diseases is the UNPREDICTABILITY.

For goodness sakes, if only they were PREDICTABLE.  What a different world it would be.  I might be able to make plans and keep them.  I might be able to sign up to take regular hobby classes or regular ANYTHINGS.

I mean, let’s not forget it takes me at least 4 hours to get ready in the morning if I’ve included waking up, stretching my body in bed to get it moving again (tends to get stuck and stiff from sleeping if I’ve slept that is), do more stretches to stand up, follow a spiritual way of life (numerous ways to do that and I try to be creative with that), probably go to the bathroom (I know TMI), take a few pills, feed and be with my Cleo Kitty who has health issues of her own and is desperate to eat by 7am or ELSE, try to wake up a bit more before eating and taking more meds, plan out my day, get stuff ready to go if I have a medical appointment and I usually have at least one a week (the next 3 weeks I have 2 each week–goody gumdrops for me), pull myself together meaning exercise to the best of my ability to wake up my body, take a shower which is an event in itself and can take a lot out of me, not to mention brushing my teeth (an electric toothbrush is best so I can save my hands and arms and their energy), get dressed, try to make my hair look presentable (thank goodness for purple short hair so it’s already kinda cool and easy), pet and love my Cleo Kitty who always needs extra love and well so do I, make sure I wear my hat to protect from the sun, wear my sun protective jacket or at least a shirt with longer sleeves, get Cleo ready for me to be gone, make some sort of business calls if I have the chance, try to sit and rest here and there because it’s a lot to ask my body since so much activity has already happened, try to maybe wash the dishes or at least some of them, sort through any weird symptoms I’m having and do my best to take care of them, and the list can still go on.

THAT’S JUST THE MORNING EVENTS…no matter what even if I’m feeling crazy fatigue–I may go back to bed but what if I can’t because I have an appointment?  I’ve gotta get through it.  I’m so exhausted from thinking about my morning and writing about it that I haven’t even written the next parts of the day where I have to keep myself in check and have all my meds sorted out to take and make sure I take them on time and have meals at good times or I end up feeling worse.

And there’s always laundry to be done.  Can I do it today?  Should it wait?  What if we need underwear?  (Hey, I’m being honest).  And what about groceries?  What about the “What abouts”?

What’s the real priority?  There’s always some sort of life that needs to get done and if I let it go it’s still there tomorrow and I have to try to be ok with not getting it done YET.  I’ll admit, that is one of my biggest struggles.  LETTING SOMETHING GO UNTIL TOMORROW…OR ANOTHER DAY…OR ANOTHER DAY…

YET SOME THINGS CAN’T WAIT…

I’VE LEARNED TO LET GO OF A LOT BUT THAT DOES NOT MEAN I’M OK WITH IT.

So life just keeps on happening.  I keep having multiple sclerosis and lupus along with all the other syndromes and issues and the world keeps spinning.  Thank goodness for choices but it’s still so hard sometimes.  I really have eased up on so much in my life and with my expectations but it takes a strict way of thinking that I really can’t get lazy with too much (sometimes it’s a wonderful thing but I can’t let go of it too long or I lose myself again and may go back to pushing too hard)…

SO I GUESS I’M STILL LEARNING…

THESE CHRONIC ILLNESSES I TELL YA…

There is just so much I can say about them and so much I don’t have the words or energy to talk about.

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MOMENTS OF PEACE PART 19!

Hey there!  Happy Friday!

Welcome to all my new followers.  All of you on my Blog journey rock my world.  Thank you so much for being here with me.  Today’s a bit harder for me after a pretty good week because I’m feeling “blech” and my Cleo Kitty isn’t feeling well at all today.  Poor little girl.

I can’t stand feeling “blech”.  At least my body hasn’t totally crashed like it did almost 3 weeks ago but at the same time, I have to rest and yet I’m a bit restless.  Such a weird place to be.  I had quite an active week so I know why I’m feeling this way.  It’s hard not to get too resentful that I’m feeling crappy today because I had more of an active week.  I mean, really?  Why can’t I just be active and then be tired and that’s it?  Nope.  My MS and lupus make me pay more attention to me and my choices and so that’s just the deal.  All shenanigans I had planned for today have to wait and well, so do I, I guess in some ways…

It’s Cleo Kitty feeling yucky that is always hard for me.  At least now we know it’s not cancer so that’s great but it’s probably some sort of immune related IBD of some sort and the hardest part at this point is to get her to eat again.  It hasn’t been a full 24 hours of her not eating but it is getting close.  I try not to freak out but of course I get sad.  She seems happy or at least positive, she’s up on the bed instead of underneath it hiding and isolated and she lets me pet her.  So all of these things are encouraging.  So I have a few other idea up my sleeve that I’ll be implementing soon to see if she’ll eat.  I hope they work.  She puked this morning and hasn’t puked since so that’s a big positive too.  But I’ll admit it’s hard.  She’s my daughter.  She’s my baby girl.  I want her to always feel good…even if that’s not realistic…

So I think in order to combat the “sads” I’m getting, I want to post some Moments of Peace I’ve had in the past few months.  Remember when I used to do those every week?  I gotta try to do those more regularly again because I really like doing them.  The last time I did a Moments of Peace post was in September 2012 I think.  Soooo, without further ado, I’ll post some Moments of Peace I’ve had in this new year of 2013:

 

Happy New Year 2013! Corey and I made it! Aren’t we cute? Apparently we are because we got a lot of compliments with this picture. I guess my forehead attached to his cheek is cute.

Happy New Year’s Day! Thank you to the first day of 2013 for giving me such a wonderful view from my balcony that morning! Such a gift!

 

My view on one of my walks in West Los Angeles, CA. It was a glorious sunset of glowing golden oranges and yellows…

 

I LOVE THESE WHITE PUFFY CLOUDS! White puffies are my favorite! There were white puffies the entire day when I took this picture. And look at that BLUE sky! Love it!

 

There are still some fall leaves in Los Angeles, CA. Go figure. While the leaves are dying, there are tons of new pine cones everywhere all at the same time. So interesting to really see it all happen this season. These fall leaves really caught my eye and made me nostalgic for my old home in New Hampshire…

 

The sky is always putting on a show. I watched the clouds and the sun set for about a half hour one evening and the show was mesmerizing as I watched the shadows and pinks dance around the clouds. The clouds were also making all kinds of shapes. It was a wonderful experience!

 

Soooo happy to see these new blooms on my new Christmas cactus! Soooo pretty.

 

Aren’t these flowers just luscious! Saw these in an arrangement and was so taken by them!

 

And these are even more luscious flowers within the same arrangement! I wanted to take the arrangement home with me but I think the people in the restaurant would’ve noticed…

 

This week I was able to take a day trip away from West Los Angeles, CA and drive about 45 minutes to Rancho Palos Verdes, CA where a friend of mine lives. It was an absolutely beautiful day and we had a great time! Here’s the Lighthouse at Palos Verdes, CA.

 

I think the sun and the ocean speak for themselves in this wonderful view in Palos Verdes, CA but to actually catch a pelican in view and in the picture was really great. My Granny loved pelicans and I’d like to think that she was saying “Hi” to me! Hi Granny!

 

My friend Kendra and I were absolutely belly laughing with hilarity and had completely lost it by the time we finally got this picture of the two of us! We just couldn’t get it to work no matter what! It was so much fun! I think you can see the laughter here in the picture which is why I love it so much. And by the way, she mentioned she thought it looked like there was a candle coming out of her head and well, now I can’t get that out of my mind. Hopefully she’ll read this and laugh again from it all. I’m giggling now just thinking about it.

 

Hey that’s me at the Lighthouse in Palos Verdes, CA! I’m picky about pictures of myself and I think this one isn’t so bad. Soooo, OK. I’ll post it.

 

On the drive home I was able to take some amazing sunset pictures along the way. I think this one speaks for itself. Breathtaking…

 

So I changed position of the camera, centered on the sun and zoomed in. This is what I got. Just breathtaking…

 

So from that same position as the previous picture, I zoomed in more and the result is well…it’s WOW…there are no words to describe…

 

And that’s how I’d like to end my post for the day.  I hope you all enjoyed my Moments of Peace.  Posting them helped up my mood a bit and feel more positive.  So happy to be able to share them all with you.

Have a wonderful and pleasant weekend all and thank you again for being you!

Categories: Moments of Peace/Pictures | Tags: , , , , , , , , , | 1 Comment

LIFE: ALWAYS IN SESSION (A BLOG POST NOVEL BY NAHLEEN BLAKE)

THIS IS MY 150TH BLOG POST!  Woo hoo!  Go me!  I think part of me was holding off posting this HUGE MIND BLOWING BLOG POST for my 150th because my goodness, it’s my 150th post!  There should be fireworks and you should all be touched FOREVER by all that I have to say. 

OK.  Well, first of all…EGO.  Yes, I have one.  It can get in the way but it helps sometimes…I suppose.  Second of all, WHAT THE HECK?  Fireworks?  Really?  I’m so weird.  I get one compliment from someone and I feel like I don’t deserve it and WOW “they really like me” and my favorite quote that Corey always teases me about, “I’m just being me” as if I’m not good enough for a compliment.  BUT THEN, I want to have words that LIVE ON FOREVER AND EVER?!

Well, no wonder no Blog was coming out.  Conflict and pressure.  Geez!

ANYWAY…

To be honest with you, I don’t know what’s going to come out of these hands as I type.  My head has been all over the place and there has been so much of life happening that I think it almost silenced me.  I know.  HA!  Yeah right!  But it kinda did.  I mean, I had to have a Blog post in order and outlined (not that I ever have…Ahem) before it had to be written.  I had to have a clear head before I wrote it.

Um, it’s the New Year.  Is anyone’s head clear right now?  Is anyone’s head EVER clear?  Really clear?  I mean, like it’s all in order.  I doubt it.

So here I am and this may be a stream of consciousness.

BUT before I go any further, I want to make sure to hit on a few things before I go off on tangents again:

1. HAPPY NEW YEAR 2013!  Turns out the world DID NOT end and we are all still here…I think.  Well as far as I know.

2. WELCOME to all my new followers.  Thank you for helping to encourage me that past posts are worth following.

3. THANK YOU to all of you for joining me on this crazy journey called life and what I like to call, “Life In Nahleen’s Head”…I hope you’re all wearing your seat belts.  My head can get crazy and I’m sharing it with you.

4. TOPIC (at least I think this is what the topic is for this Blog) “LIFE: ALWAYS IN SESSION”.

You know, the first time I heard those words from a very wise person I know, I was beside myself.  How profound that sounded.  How simple that idea is.  Life is always in session.  There’s always something going on.  There are always errands to run, people hurting, happy people, the weather continues to change, and really nothing stays the same does it?

So why is that idea so hard?  Why is it that it’s so hard to accept that life is always happening and changing?  Well, for me it’s that YET AGAIN, I gotta morph to it and be flexible.  Ew.   AND if a new event pops up in my life, that doesn’t mean the rest of life STOPS.  Wouldn’t that be great to be able to stop all of the other stuff, you know like stop time whenever we want and how we see in fantasy/sci-fi movies and they make it look so easy with their special effects, that we STOP everything else so that we can take care of this SPECIFIC thing that’s happening?

But then, if it’s something that’s really hard to deal with, then we have to be ready to deal with it.  So, then when do we stop the rest of what’s going on in our lives?  And hey, maybe we don’t want to stop that other stuff.  Maybe it’s the other stuff that helps to keep us going right?  Or maybe it isn’t. 

But the point is: LIFE IS ALWAYS IN SESSION–DANG IT!

I had to add that extra part because well, it’s how I feel most of the time even if there is more than one good thing going on, well then what comes first?  How do I prioritize?  How do I process it all in my crazy filled head?  Isn’t it already filled to the brim?  How can it take on more?  Should it take on more?  Does it need to be handled right away?  WHAT’S GOING ON?

ACK!

Then I turn into the loveable Tasmanian Devil from those wonderful Looney Tunes cartoons of the past and away I go.  But where do I go?  Usually I’m just spinning in place.  But if I’m spinning, I probably don’t have my feet firmly on the ground now do I?  I probably haven’t paused to breathe. 

AND MY HEAD JUMPS IN RIGHT NOW AND ASKS:  WHAT?  BREATHE?

What’s breathing?  Well, there’s the involuntary breathing that thank goodness our bodies are already programmed to do.  Thank goodness for that huh?  I mean, imagine if we didn’t have that involuntary process.  Hmm.  Oh how different life would be.  Would we make it as humanity?  I don’t know about you, but quite often I find myself forgetting to take those intended deep breaths that help get the oxygen into my body and brain and usually help me to relax and calm down even a teensy tiny bit.  So then I’m sort of I guess holding my breath.  Well that’s not good.  The body needs to be doing both kinds of breathing in order to survive the best way: involuntary and voluntary.

SO WHAT AM I GETTING AT HERE?

Well, somewhere along the way in late October or November (or maybe I had never REALLY found myself even a bit at all) I LOST MYSELF.  Where’d Nahleen go?  I’m sure she was there.  I speak of myself in third person on purpose.  She was out there handling the world the best way she knew how.  The holidays were coming upon us.  Cleo Kitty was going through a bit of a hard time and we had to cancel our little Wedding/Together Anniversary Trip to stay with her.  Wouldn’t have changed that for anything but I think it played a part in things.  (I haven’t had a chance to get away for over a year due to either my health or Cleo’s, both or just life reasons in general and I’m feeling it.)  But then, Cleo got so much better and we nursed her back to health, after bringing her to her wonderful new vet who was ONLY a second opinion vet for her back in February of 2012 because we thought she was dealing with cancer. 

BUT then come to find out a few weeks later with a very different care regimen for Cleo, that she was UNDIAGNOSED with cancer because it had been a year since her DIAGNOSIS OF PROBABLE CANCER (Corey and I had made the decision along with Cleo, NOT to do any invasive testing on her and to just let her be a kitty and keep her comfortable as long as she needed it) and as her new vet told us, she was showing NO SIGNS of these probable cancers and she DEFINITELY WOULD BE BY NOW–and that was in November 2012 I believe.

Well, then how AWESOME WAS THAT?!  A true MIRACLE!  I would love there to be more UNDIAGNOSES FOR ME AND ALL MY LOVED ONES AT THIS POINT.  She does however have a very sensitive immune system like I do (oh the parallels of our health together can get a bit too creepy sometimes if I think about it too much) and probably has asthma, IBD of some sort and probably chronic upper respiratory infections that will affect her off and on so we gotta find balance with that.  BUT STILL!  As Corey put it, there was no DARK LOUDLY TICKING CLOCK (Edgar Allen Poe comes to mind) HOVERING OVER OUR LIVES ABOUT how many days Cleo had left.  Sure, she’s older and has immune issues but her life is wide open.  AND YOU KNOW WHAT?  She’s doing EVEN BETTER now.  It helps to be told you don’t have cancer and to see that your people are even brighter about you now I’m sure.  I believe she’s more youthful than she’s been in a LONG TIME.

So yay about that right?  OF COURSE!  But I think it lifted me off the ground even more and it was hard to trust anything after that.  What was real?  What wasn’t real?

THEN THANKSGIVING HAPPENED.  That was a great day.  It was so nice to be of service to others.  Corey, our friend Aaron and I volunteered at a big event that welcomed ALL to come together as a COMMUNITY and cook, eat, cut hair, make crafts, have a kids carnival in the morning, dance, sing, get free check ups from doctors, get family photos, give away and pick up free clothes and the list goes on and on.  Apparently, the event was an absolute success.  I had the PRIVILEGE of being a VOLUNTEER to sit and eat with people and talk to them.  Well, that’s no problem for me now is it?  To be honest, it was a bit awkward at times.  Usually if it was a family I sat with (I think I sat with at least 4 different families as the event went on) and there were kids, it was the kids who were talking to me, not the adults.  Well, that was fine.  I love kids.  I always have and find them very easy to talk to.

MEANWHILE, as all of this was happening, I was still waiting for Social Security Disability to come through and get their payments to me correctly because it helps to have money but at the same time, I saw all of these people who had so much less and it started to not matter.  At some point along the way, I don’t even remember the day which is AMAZING, they did come through and it looks like the payments are FINALLY coming in right after 2 years of waiting for them to get it right.  Still have a few things to iron out with that but I’m ok.

I DON’T REMEMBER THE EXACT DATE THIS ALL CAME TO A HEAD, (again, Amazing that I don’t have the exact date etched in my head), BUT MY DIGESTIVE SYSTEM STARTED FLIPPING OUT AND I COULDN’T EAT ANYTHING WITHOUT FEELING LIKE MY STOMACH WAS LURCHING AND TRYING TO JUMP OUT OF MY BODY.  I’m convinced that the writers/producers of the movie “Alien” had had digestive problems of some sort because THAT IS WHAT IT FELT LIKE…I couldn’t eat a half piece of toast without feeling like my organs were trying to jump free from my torso.  SOOOO, after being on those HORRIBLE digestive antibiotics for what I’m now finding out was way too long, I found myself in the ER.  I had asked my original Gastroenterologist at the time if I should go and he told me NO.  Well, it’s a good thing I listen to my own body because I called Corey and asked him to come home from work and drive me to the ER.  I couldn’t take it anymore.  It was the day of the huge storm Sandy on the east coast.  I think my timeline is off here but oh well.  Anyway, I remember that because there was a TV in the ER Exam Room I was placed in and I got to be entertained and mortified at the same time (I’m a weather geek but I do have a heart) while I felt so horrible.  They did bunches of tests and gave me some drugs, said they didn’t see a lot but sent me on my way.  I did feel a bit better but I needed more than that.  I found a way to be referred to a second opinion gastroenterologist (was a bit roundabout because my group of doctors pretty much all know each other and are all kinda in it to help each other and I knew I wouldn’t get very far asking my Primary because he’d still stick with what the original Gastroenterologist doctor had said to do and that would’ve gotten me in more trouble) and was able to see this new second opinion specialist almost immediately.  What’s great about going to the ER is that all kinds of tests were done and having been an experienced veteran of the ER experience I was somehow with it enough to ask for all files and records of what had been done so that all of my doctors could get these answers.  So glad I did that.  I brought all the records and results to this second specialist and after a few questions (the right questions I guess) I was able to get a fresh perspective about what might be going on with me.  He is now my current Gastroenterologist.  I won’t go back to the old one.  The old one helped me so much for two years.  I need this new guy.  He’s very calm and calming, he knows exactly how to handle a crazy planning person like me, he keeps me much more present and in the moment, he is very clear about what he knows and with his help I was able to be diagnosed with IBS or Irritable Bowel Syndrome.  I’m still currently on a treatment to help get rid of the flare but if you ask me it’s been long enough.  That’s just my head.  Honestly, how cool that this is a medication that I don’t have to be on FOREVER and that my diagnosis wasn’t too hard this time.  He said EVERYTHING I’ve told him of my symptoms and feelings is sooooo common for IBS that he has no doubt.  WHAT???  I have something that was easy to diagnose.  It’s never happened that way before.  Almost felt like something wasn’t right.  With this new doctor’s help I have been feeling much better since.  The flare is not cured just yet and may never be where I want it but with his help, he has GREATLY CHANGED THE QUALITY OF MY LIFE.  I had NO IDEA how much my body was really suffering from this issue flaring up like it was.  NONE.  SO YAY ABOUT THAT.

SO AT SOME POINT THAT FIRST WEEK AFTER THANKSGIVING, a crazy switch went on in my head and I started feeling what I call HOLIDAY AFFECTIVE DISORDER.  Some call it SEASONAL AFFECTIVE DISORDER but I use Holiday instead because I start to really feel different and like the decorations have to be up, the gifts have to be bought, I need to bake, will I feel OK to do any special event and the list goes on and on and on.

SO AS MY HEAD STARTED ITS HOLIDAY CRAZINESS, the next thing I know, I FEEL AS IF THE FLOOR AND THE WORLD ARE BEING PULLED OUT FROM UNDER ME…Why you ask?  Well, the Private Long Term Disability Company that I was also getting assistance from, had been doing a two year review of my health and my case.  They bothered all of my doctors yet again with requests for records, files and very vague evaluations.  Oh and I had to fill out my own assessment form too.  My two years is actually not even up until January 29th, 2013 so isn’t that interesting.  BUT on November 21st, 2012 they decided that they would terminate my coverage and not tell me right away.  BECAUSE OF THIS LONG TERM DISABILITY COVERAGE that I had been paying for at my Old Employer for over ten years while I was still actually working, I was able to be covered by THE AWESOME HEALTHCARE PLAN of my Old Employer up to five years as long as this Disability Company said I was Disabled.  NOW THIS WAS NO SURPRISE that they terminated my Disability Coverage.  I had been warned from the beginning by the first Claim Manager I dealt with in that Company that at the two year mark it would be really hard to get coverage.  But see here’s the thing, I ONLY FOUND OUT because I got something really weird in the mail about how much they were paying me in November (it was much less) and no explanation for it.  So ME BEING ME, I called the Claim Manager to inquire about it.  THIS WAS THE LAST WEEK OF NOVEMBER 2012.  She got a bit tense and quiet and said that oh no, the mail must’ve been delayed for some reason and the two items sent in the wrong order or something but that my coverage had been terminated as of NOVEMBER 21ST.  That was the day before Thanksgiving.  I did my best to keep my cool with her on the phone and made sure she explained the Appeal Process but she really didn’t want to do that and then I got off the phone. 

I FREAKED OUT!

Well, of course I did.  First, I find out the hard way that I don’t have their coverage.  Then I KNOW THIS MEANS I’M LOSING REALLY AWESOME AND GREAT HEALTHCARE COVERAGE.  So, I called the Director of Benefits at my Old Employer and told her the situation.  I called her on NOVEMBER 28TH.  She told me she was very upset for me and for her department because this Disability Company had put US ALL in a bind.  WHY YOU ASK?  Well, ignoring the obvious reasons of this all sucked, it meant that my HEALTHCARE COVERAGE WITH MY OLD EMPLOYER WOULD HAVE TO BE TERMINATED BY THE END OF THE MONTH.  Yes, you understand.  NOVEMBER 30TH would be my last day of COVERAGE…

WHAT?!  NOW WHAT?!  FREAKAGE GALORE!  The Director of Benefits apologized to me for this situation, I told her how the Disability Company had handled it and told her some more personal things about what I was going through and she was appalled and said that she’d have to really look at their contract with this Company because there is something very wrong with the whole process…

YES, YES THERE IS…

AND YES I’M GOING TO APPEAL…when I can get myself together.

YOU SEE, here’s the thing.  This is how I know I’m being watched over by something–call it the Universe if you like.  Because Social Security had pulled their business with me together FINALLY, they had decided they would retro-cover me back to December 2010.  After two years of coverage, then I’d be eligible and automatically enrolled in MEDICARE.  So I had already received this stuff from Medicare, was having pride issues of being on Medicare at only 35 and having a hard time accepting it but during this state of panic about healthcare coverage that I can’t afford to live without due to my MULTIPLE SCLEROSIS AND LUPUS (hello, I CAN’T WORK EVEN IF I WANT TO RIGHT NOW–THEY DIDN’T JUST GET CURES AND GO AWAY), I managed to pull out the paperwork and see that I had MEDICARE COVERAGE AS OF DECEMBER 1ST for Parts A and B.  I could choose about Parts C and D.  What’s C?  I’m confused about that one and it’s not important.  What’s D?  Oh well, then funny you should ask.  That’s Prescription Coverage that I can opt into in Medicare if I decide to.

OK.  WELL THEN THAT WOULD’VE BEEN FINE AND DANDY WITH NOTICE…However, I had no notice.  Sure it was so miraculous to put it lightly that my OLD EMPLOYER HEALTHCARE COVERAGE ENDED ON NOVEMBER 30TH AND MY MEDICARE COVERAGE STARTED ON DECEMBER 1ST (no kidding there) but I had just had a conversation with the Director of Benefits at my Old Employer two weeks before (neither of us knowing my Disability Coverage would be terminated) and she told me not to worry about the Prescription Coverage Part D Part of Medicare because I could still get that coverage with the Old Employer Healthcare Coverage and all would be fine and dandy and so much cheaper and less dramatic…

BUT THEN I HAD NO HEALTHCARE COVERAGE BUT MEDICARE…

MORE FREAKAGE…I honestly could not even do ANYTHING about it all for at least a week.  I was COMPLETELY DEFLATED and at the end of my rope.  Well, sure there was rope but it was a very very thin thread and I refused to even pull at it or even grab hold.  I HAD HAD IT!

SO WHAT DID I DO YOU ASK?!  Well, I found myself suddenly making a hair appointment at a new salon that deals with curly hair (had been coloring my own hair purple for eight months at that time and hadn’t had it cut for eight months either and it needed to be taken care of badly), getting two new hair cuts (the first one didn’t fit me at all and well, I hadn’t had the coloring done just yet–only the consultation–so when I came in for the coloring appointment I had a big heart to heart with my stylist/artist about what I really needed to do with my hair for me at that time and she listened, understood and together we collaborated to cut my hair a lot shorter and get the purple I really wanted.), one of which (the final) will apparently be featured in their salon book because this Junior Stylist/Artist was being watched by the Senior Stylist/Artist and LOVED what we came up with and NEEDED TO GET A PICTURE RIGHT AWAY OF IT TO SHOW OFF TO EVERYONE AT THE SALON AND THEIR CLIENTS.  This guy also told me I was a true artist and it was so much more me.  Going through that whole experience is what I think I needed to find some of me at some point.  At least for the holidays.  I needed more oomph and acceptance of me because I felt so scared and defeated.

THEN: I GOT A CRASH COURSE IN MEDICARE–while still infuriated and hurt and disappointed and panicking about coverage.  Calls were made, notes were taken, website was looked at, advice was asked, and then an hour and a half on the phone with a company that may have handled the Prescription Coverage (the lady was so nice and patient) due to my long list of medications and BECAUSE my MS Medication is such a huge dramatic and EXPENSIVE pain in my butt and always has been in my over 10 years of diagnosis (10 years was December 2nd, 2002…so that was going through my mind too) and I’ve always had to jump through hoops to get it even with a PPO…Meanwhile, Corey was going through Open Enrollment for Benefits with his Company and he kept asking me if I wanted to be on his Plan and from what I could see, it looked and seemed to me like it would be more expensive but I guess I didn’t understand what I was looking at because at the last minute before he completed enrollment, he called me from his work and we went over every detail of the coverage if I was part of his plan and we ended up signing me up with his HEALTHCARE PLAN TOO!  SOOOO, AS OF TODAY, JANUARY 8TH, 2013 I still DON’T NEED MEDICARE PRESCRIPTION PLAN PART D yet….PHEW! 

OH AND I’M COVERED BY TWO DIFFERENT PLANS RIGHT NOW: COREY’S HEALTHCARE PLAN AND MEDICARE.  Can’t have asked for better coverage at this point.

BUT BOY WAS THE PROCESS ALL HELL.

OH AND SOMEWHERE IN THERE I started getting an upper respiratory/sinus infection and had to hurry to the doctor and be thrown on antibiotics to try to kill it right away because they don’t want to take any chances with me and my diseases and immune sensitivities so that was NO FUN.  But it made the infection go away and I’m grateful about that.

MEANWHILE, we celebrate Christmas and so Christmas was happening…Oh yeah.  That too.  I was doing pretty well at this point.  My body was handling everything very well.  I’D LIKE TO PUT A SHOUTOUT TO MY BODY AND THANK IT FOR ALL I PUT IT THROUGH FOR OVER A MONTH!  It let me do a lot of holiday things.  I even competed in a Cookie Swap Party and won 1ST PLACE with my special “Nahleen’s Special Snowball Snack Cookies” and was so touched and surprised to have won.  I’ve been making those since I was ten I think, so like twenty-five years…Crazy.  I feel old…But so cool to win.  I don’t think I’ve ever won first place for anything.  And you know what, it was a really nice Christmas.  I missed my loved ones back east big time this year but Corey, Cleo and I pulled off a pretty darn good one.  And things were starting to fall into place…

HOWEVER, THERE’S STILL SO MUCH TO DO with all this Healthcare Change stuff.  Gotta find out how to get my MS Medication (might I add that the Company who handles my MS Medication and the woman assigned to work with me to get it are absolutely WONDERFUL and I swear that woman is an Angel sent to help me–so sweet, so helpful, funny, knows more about my benefits than I do and so on) the right way although they’ve been sending it to me for no charge temporarily while it gets worked out–AMAZING!  I still need to change all my doctors over and let them know about my insurance situation.  I still need to change all my medications over to the new Prescription Plan.  It’s all new.  It’s all Change. 

CHANGE.

THEN NEW YEAR’S CAME AND HAPPY NEW YEAR 2013!  WE MADE IT! I had a great time with a friend watching Corey on Stage after he had been up for a bazillion hours because it was a One Day Play.  The writers had worked on it overnight, the actors and director showed up in the morning and they had to perform a play twice that night at 8pm and 10pm.  It was a crazy, funny play that left us all wondering what really just happened but it was great to take in the New Year with a laugh.  A friend of mine came with me and it was nice not to go alone too. 

MY BODY HUNG ON UNTIL JANUARY 2ND, 2013 and then CRASHED.

I woke up on January 2nd and my whole body felt inflamed.  It was like it was holding on for me as long as it could and when it felt safe, it let go.  I felt like I was on the verge of an MS Attack, a big Lupus Flare, and every symptom I ever felt ever was happening.  And if it didn’t happen that day it’s been making sure to still show itself today, January 8th.  I’m very fortunate to have a body that gives me lots of warning before it attacks.  If I listen to the warning and rest a lot than usually I can avoid any major action like being PUMPED WITH STEROIDS IN THE HOSPITAL FOR 3 DAYS TO TREAT AN MS ATTACK, or who knows what would happen with the LUPUS and how all that would happen.  I am grateful because not everyone with MS or lupus has that “luxury”…

During this past week I’ve been thinking I’ve wanted to FINALLY write my 150th Blog Post Finally and to get it out but it’s been locked in.  I think I’m pulling a bit into my cocoon to protect myself and because I’ve had enough.  I have to lessen the amount of activity I do and everything has really had to come to a halt or what I consider a STOP and RECOVER.  The RECOVERY to me is taking too long of course and the anger has come back up.  I keep thinking about what I “SHOULD BE” doing or what I “HAVE TO BE” doing and that gets me into trouble.

There’s still so much to handle with the Appeal and cleaning up the healthcare mess, and still having less money and with life, like laundry and grocery shopping and paperwork and managing Cleo’s health, and trying to have a life, and not being able to exercise as much and and and and and—I COULD GO ON FOREVER…

BECAUSE: LIFE IS IN SESSION.  IT IS ALWAYS IN SESSION. 

BUT I WANT TO END ON A POSITIVE NOTE:  DESPITE EVERYTHING THAT HAS BEEN GOING ON, I HAVE TAKEN A WALK FOR OVER 250 DAYS AND I KEEP ON WALKING…

GO ME!  GO ME!  GO ME!

So now it’s time for OPERATION: NURTURE NAHLEEN.

What’s that you ask?  Well it really occurred to me yesterday that I’ve learned to LOVE myself quite a bit BUT I’m not nice about it.  I’m not COMPASSIONATE, NURTURING, GENTLE, UNDERSTANDING, CONSIDERATE OR EVEN RESPECTFUL about it.  I tend to be mean about it.  Sure I’ll do what I need to do for rest and I know this is the body I have and I’m learning to LOVE IT but what about LIKING IT.  IT’S ME.  It’s part of who I am.  If it were someone else going through all of this health stuff all the time I’d tell them to be nice to themselves and take it easy, to be gentle and get some rest.  HECK, even if they have sniffles I’m telling them to take care of themselves and I’m so loving about it.  DO I DO THAT WITH ME?!  NO.

SO NOW I WILL FINALLY STOP WRITING AND GET BACK TO:

OPERATION: NURTURE NAHLEEN

It won’t be easy.  It was much easier yesterday than today.  I’ve wanted to rebel today.  But I’m determined to work on it and I know that with practice it will become easier.  That it’s not about perfection but about progress…

***And I really want to thank all of you who have supported me, talked to me, listened to me, loved me, hugged me, smiled at me, accepted me and been there for me this whole time.  No one should have to go through anything ALONE and I was never ALONE nor did I feel ALONE.  We are all in this together and I really felt ALL OF YOU holding me up and together.

THANK YOU.

 

 

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HOLY MOLY DECEMBER!

I write the title that way because December seemed to have pounced in LIKE CRAZY and just keeps going that way!!!

Decembers are always hard I think for most of us.  Not only is there usually some sort of Holiday we celebrate (Christmas here)  but then we end up getting thrown end of the month and year deadlines, new enrollment deadlines and choices, extra bills that come out of nowhere, and extra LIFE just KEEPS ON COMIN’!  And it’s NOT JUST BECAUSE OF THE HOLIDAYS!

Sure the Holidays have a tendency to drive me wacky.  It all gets magnified.  Ain’t that the truth.  I get what I call H-A-D or Holiday Affective Disorder.  It’s like a switch turned on the day after Thanksgiving (interesting that it wasn’t the week before–guess I’m making progress) in my brain and the CRAZY ANXIETY started about HOLIDAYS HOLIDAYS HOLIDAYS and this has to be done and that has to be done and and and…SOUND FAMILIAR TO ANY OF YOU?

So I had to really work on BREATHING (Tends to help.  I mean who knew right?), meditating, keeping perspective, talking it out, staying in the moment, one day at a time and all that hoobilly doobilly stuff and it helped A LOT.

BUT THEN, I received word (ONLY BECAUSE I SAW A DISCREPANCY IN A PIECE OF MAIL AND HAVE LEARNED TO ADDRESS THESE THINGS) that my Private Long Term Disability Entity that was connected with my previous employer (and who I HAD BEEN PAYING FOR SINCE I STARTED 11 YEARS BEFORE I LEFT), had TERMINATED my DISABILITY COVERAGE and NO ONE HAD TOLD ME ABOUT IT!  AGAIN–the ONLY REASON I FOUND OUT EVEN WHEN I DID WAS THAT I CALLED AND ASKED ABOUT A PIECE OF MAIL I HAD RECEIVED THAT MADE NO SENSE TO ME…

BY TERMINATING MY DISABILITY COVERAGE, THAT ALSO MEANT THAT MY HEALTHCARE COVERAGE CONNECTED WITH MY OLD EMPLOYER WAS ALSO TERMINATED BY THE END OF THE MONTH.  I found this all out the last week of November 2012.  I ended up calling the Director of the Benefits Office at my old employer and asked her about it.  At this point I was so enraged and furious I could hardly function.  She was very upset with this entity for giving no notice to me and to them because it would be a mess because they terminated my coverage and no one knew till later in the month and MY HEALTHCARE COVERAGE WOULD HAVE TO END BY THE LAST DAY OF THE MONTH…if I recall correctly I learned I lost HEALTHCARE COVERAGE 2 DAYS BEFORE IT WAS DONE.

NOT COOL.  WORDS CANNOT EXPRESS MY PANIC, MY FRUSTRATION, MY ANGER, MY FEAR, MY RAGE, and there were so many feelings that I just could not even express in words.  There are not enough words to describe feelings like this in the English language.

THERE IS A BLESSING HERE THAT I HAVE NOT MENTIONED.  I had been enrolled in Medicare (my Pride has a hard time with that since I’m 35 but now I know it’s an absolute BLESSING so I’m learning to accept it and fast) automatically by Social Security Disability and since they were covering me retroactively as of December 2010.  (Social Security Disability is starting to clean up the mess I was in with them.–thank goodness because that would’ve really hurt at that point).  After 2 years you’re automatically eligible for Medicare when you have Social Security Disability.  So there it was.  The TIMING WAS PERFECT.  On November 30th I LOST healthcare coverage with my old employer.  On December 1st I STARTED Medicare healthcare coverage.  CRAZY PERFECT TIMING…

HOWEVER THERE IS A REALLY BIG TWIST that has not been mentioned.  A couple months back the Director of Benefits at my old employer had told me to go ahead and keep Medicare as my Primary and that they would be my Secondary.  She also told me that I DID NOT have to sign up for Part D–Prescription Coverage–separate Plan with Medicare–because I could stay with the Prescription Plan Healthcare Coverage with my old employer Healthcare Plan.  SOOOOO, there I was on December 1st with Part A and Part B covered with Medicare and NO PRESCRIPTION HEALTHCARE COVERAGE….

SOOOOOOOOO UNCOOL to say the least of descriptive words possible…

It’s already hard to pay out of pocket for medications and we all know it gets expensive and fast and that’s even with coverage and co-pays.  However, my MS medications have ALWAYS BEEN AND SEEM TO CONTINUE TO BE RIDICULOUSLY EXPENSIVE (even after 10 years of diagnosis) and the one I’m on right now is still a bit harder to be on and requires a lot of extra attention from the Healthcare system because it’s still so new and Man is it EXPENSIVE!  BUT it has helped improve my MS health immensely so it is worth it.

And so I’ve been trying to pull myself back up after being pulled under by a bunch of entities that seem to be making an effort to make it as hard as possible to be DISABLED.  UM…PSSSSST…IT’S ALREADY FRIGGIN’ HARD TO BE DISABLED.

I DID NOT ASK FOR MULTIPLE SCLEROSIS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR LUPUS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR ALL OF MY OTHER CONDITIONS THAT GO ALONG WITH CHRONIC AUTOIMMUNE DISEASES AND FOR THEM TO BE CHRONIC EITHER.

I DID NOT ASK FOR TONS OF MEDICATIONS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE.

I DID NOT ASK FOR THIS MANY DOCTORS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE EITHER.

I DID NOT ASK FOR ANY OF THIS.

I’m just me trying to be me and live my life the best way possible.  I’d also like a chance to RECOVER which is really hard to do when not given a break unless I give myself one.

That’s the thing.  I’ve had to schedule time to take more breaks, to try to have a social life, to get domestic life taken care of, to take care of our dearest Cleo Kitty who is doing so well (now that she’s been UN-DIAGNOSED WITH CANCER–MIRACLES DO HAPPEN!), to try to be creative, to try to participate in life-y things, to try to be doing anything I can to keep a smile on my face for the Holidays without forcing it all and pushing through it, to exercise and keep on walking (and I’m getting to 250 days in a row very shortly), to spend time with my husband, to breathe, to live, to have fun, to JUST BE…while LIVING THE LIFE AS SOMEONE WITH DISABILITIES who has to be as PROACTIVE as possible at all times with self care which also includes my eating better things for the Nahleen Diet, getting fresh air, being outside, brushing my teeth, taking a shower (still too much of an event), following up with doctor appointments, addressing colds and other infections immediately, taking care of this newly diagnosed IBS (I do believe we might be getting somewhere but medical tests are being done and those too take time), writing, trying to get more sleep and rest, WHATEVER IT TAKES FOR ME AT THE TIME.  Oh and the symptoms are still coming and going and I have my hard days and not so hard days.  Fatigue is still one of my main issues.  It’s not like they’ve gone away just because this ENTITY has decided THAT I CAN WORK…(Don’t get me wrong.  I’d LOVE TO WORK–who knew I’d say that.  IT WOULD BE A LOT EASIER THAN GOING THROUGH THIS DIFFICULT PERSONAL JOURNEY…)

My life is big–no it’s HUGE lately BUT I’m getting through it with lots of help, love and support that I’m learning to give myself more, from my friends, my family, so many loving people I know in spiritual groups who hold me up, social media, some people I’m getting know at the Pharmacy (sad but true), my awesome husband, my Cleo Kitty and you know what–it’s OK right now.  In fact, I let myself sit with that big blow when it first hit and tried to PROCESS THE TIDAL WAVE OF THE HUGE BLACK BLOW THAT NOT ONLY HIT ME FROM ABOVE BUT THEN TOOK THE WORLD I THOUGHT I WAS STANDING ON RIGHT OUT FROM UNDER ME…

The sitting helped.  THEN IT WAS TIME FOR MY OPERATION NAHLEEN HAIR RE’DO which is much shorter and purple and I LOVE IT.  It is THE NAHLEEN ‘DO!  That helped rebuild me A LOT. I had felt so depleted of everything.  I really had hit a bottom and was floundering.  They say you’ll always get more rope if you feel like you’re at the end and well, if there was any, it was frayed and withered away and may have broken had I grabbed it.

And as TIME HAS PASSED I’m picking myself back up with the help of the Holidays ACTUALLY (sure they’re stressful but I’ve learned over the years to just go with it and whatever happens happens–of course I haven’t felt this way EVERY DAY but I’m trying).  I baked 1st PRIZE WINNING COOKIES for a Cookie Swap Party last weekend that are my tradition to make every year and I think have been for 25 years or so and I still can’t believe I won.  That I even felt up to making them, going to the party, staying and then that I won was so awesome!  Really meant a lot to me in so many ways.  I was IN IT.  It felt so good to be creative and use my hands.

This week I dealt with a TRUE ANGEL (fully believe this) at the MS Medication Company Patient Program who helped me so much.  She stayed calm and knew exactly what she was doing.  I was so worried about how to get my medication without any insurance right now and she made sure I had enough for at least the next month.  She was the one following up with me.  Amazing professional ethics, consideration and respect.  I am truly grateful for her.  It was hard enough to start paying out of pocket for the other medications I need this month.  BUT it is all being recorded for the future.  I am working on RESEARCHING (HOLY CRAP IT IS SO COMPLICATED AND THEY MAKE IT SOOOO HARD TO GET A REALLY GOOD MEDICATION WITH MEDICARE–THEY REALLY DON’T WANT US TO BE ON MEDICATION NOW DO THEY?) this Part D Prescription Plan stuff and I have to take it slowly because it’s stressful and exhausting to look at and I need to know what I’m dealing with.  I was given NO LEAD TIME TO FIND THIS STUFF OUT.  INFURIATING.

I was also given a probably potential silver lining with my husband’s healthcare plan at work on Friday.  I thought it would be too expensive to do and got all confused about how it all worked and then he called me last minute and we went over it piece by piece to see if it would be worth it for me to be on his plan and I BELIEVE IT ABSOLUTELY IS and I ALSO BELIEVE I’M OFFICIALLY GOING TO HAVE A SECONDARY HEALTHCARE PLAN NOW which also probably means (with a little more research) THAT I DON’T HAVE TO DEAL WITH PART D-PRESCRIPTION COVERAGE WITH MEDICARE which is a TOTALLY AWESOME thing because my goodness the HEADACHE.

AND YES.  I WILL APPEAL THE DECISION THIS PRIVATE LONG TERM DISABILITY PLAN MADE ABOUT TERMINATING MY COVERAGE.  That is coming.  I am very resentful that this must happen but I need to fight not only for me but for others out there who don’t have the support I have and well THEY JUST CAN’T DO IT (I have those days quite a bit but I am too stubborn to let them win this one.)  I have a bit more to pull everything else together with my healthcare coverage and THEN LET THE APPEAL GAMES BEGIN.–As if I really wanted to do more work with ANOTHER APPEAL.  AND AS IF THEY ARE GAMES…

SO TIRING AND DRAINING.  So tired of talking about how awful my health is and trying to prove it yet not being able to really celebrate the improvements that have occurred is so sad.  Sometimes I feel like I have to be at least 2 people…

MS IS ENOUGH FOR DISABILITY.

LUPUS IS ENOUGH FOR DISABILITY.

MS AND LUPUS ARE DOUBLE ENOUGH FOR DISABILITY.

THERE SHOULD BE NO QUESTION.

**Anyway, I wanted to make sure to write and let you know that you are all on my minds all the time.  I look forward to less busy times ahead (hmmm…will it be so?) without end of the year stuff and the holidays so that I can back into writing more regularly.  Just writing this Post has helped me so much.  I was going to post a quick note to say hi and stuff and then it all came out.  Thanks so much for reading.  By the way, it seems I have New Followers.  WELCOME.  What a year it has been with this Blog.  *March 2013 will be my 1 YEAR ANNIVERSARY OF WRITING THIS BLOG.* I am so happy and honored to have you all here on my journey with me.   And I so hope you are all doing okay.  I know it has been a rough year for a lot of us and I wish you all the best.  Please feel free to spread the word about my Blog, comment on my Posts, visit me on my Facebook Page that is supposed to be a supplement for this Page called “Nahleen.com” at http://www.facebook.com/Nahleencom, also on my Public Timeline at http://www.facebook.com/nahleenblake, and on Twitter at http://www.twitter.com/nahleenblake!

Please whatever you do or don’t celebrate, I hope you have a wonderful end of the year if I don’t check in before then and may 2013 bring us all more peace in as many forms as possible!!!!

Much love!!!!!!–Nahleen

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2nd Opinion Gastroenterologist Turns Into THE Gastroenterologist!

So today I have an appointment with a doctor who used to be my 2nd Opinion Gastroenterologist.  I call him THE Gastroenterologist now because he really has become the doctor to help me the most on my health journey right now when it comes to digestive issues and apparently I REALLY HAVE THEM!

He helped me figure out that I was dealing with Irritable Bowel Syndrome (and probably had been all my life without being aware of it) in November and his treatment and CALMING DEMEANOR have really helped me.  The 1st Gastro doctor was very helpful for me for almost 2 years but he was so stuck on me having a small intestine bacterial infection that that was all he saw.  Soooo, when my digestive system started acting up he’d throw me on antibiotics which I will admit really did help in the beginning.  BUT THEN, I’m pretty sure they were REVVING up my IBS and my intestines were screaming at me!

So glad I listened to some gentle nudges from others close to me because I don’t know where I’d be now.  I asked for a referral from a newer Gynecologist (who may just end up being my new one there too even though I LOVE my current one) and she was able to give me the name of this current Gastro specialist.

Not only did I like the office environment but I was told right away by his Medical Assistant that I was in the right place and that the doctor I was seeing was the expert with IBS and other digestive issues.  She also said I was in good hands and not to be too nervous–when she had noted how elevated my blood pressure was from being nervous in a new doctor’s office.  She said he was very calming.  And then she pointed out that I was in the right place and that the whole team of doctors in that office work together to help their patients get better.  She said if there’s a problem, they’ll figure it out.  I’d never heard a medical professional within the same office have so much faith in who they worked for…

This doctor sure is calming.  Wow.  AND he’s proactive.  He is very much about dealing with the problems of the moment and not thinking too much in the future and he’s gentle and to the point.  The treatment he first prescribed me helped me a lot.  I FELT LIKE A DIFFERENT PERSON–so much better than I had.  He told me that he was sure my MS and lupus would also feel better if we could just get my body to calm down.  Well that was true too!  He also assured me that there were a lot of various different types of treatments and so if this first one didn’t work or last that we could go a different route.

Well a few weeks ago I was hit with a sinus infection and the doctors get really scared when I get any infection because the diseases I have could flare up and I’m very apt to go from something minor to something major like pneumonia in no time so they’re hit with the dilemma of needing to give me antibiotics to kill it right away.  I wondered this would do to my IBS and my IBS treatment.  Well, let’s just say I haven’t been able to get it back to the “better” it was at since then.  It does still seem to be working but I’m flared up a bit again and according to this doctor, it just means it’s not the right treatment for me or balance just yet.

Soooo, we’ll see how it goes.  As much as I’m so tired of going to the doctor, I’m also really tired of having a part of me that feels really crappy.  So it doesn’t bother me too much to go to this doctor and see what we can do about my situation.  It’s nice to have a doctor who wants to try new things at least to get it right and be proactive and NOT have one who was really telling me to JUST DEAL and keep staying on the antibiotics for the supposed small intestine bacterial infection (I’m convinced I did have one at some point but NOT then) for as long as needed.  I also look forward to his calming influence.  I need that a lot these days.

Yet again I learned to listen to my body.  My body tells me when something’s not right.  I know my body better than anyone.  I need to speak up for it when I can.  I also need to take care of it too which means less stress.  I’m working on that but it’s hard with some of the financial and healthcare insecurities I’m dealing with these days but that’s a whole other Blog post or posts for that matter.

It’s nice to get back into this.  I’ve missed it.  Thank you all for joining me and for reading.

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