Posts Tagged With: husband

I’M OK

I’ve been reflecting a lot about my Blog post yesterday, “Diagnosis Part 5: MRI”.

It helped so much to write that. I needed to really get that out. I needed to tell the whole world about my experience. It freed me a lot. I felt lighter after I wrote it and I’ve been breathing easier ever since.

And what I’ve become aware of even more today is something so enlightening and positive.

I’M OK.

I, Nahleen Virginia Blake (yes that’s my Middle Name), am OK. Oh my goodness! I’m OK. If you had told me that night of my first MRI that over 10 years from that whole experience I’d say I was OK I’d have pushed you away. I’d have ignored you. I wouldn’t have believed you. I probably would’ve gotten sick to my stomach.

No Way! I was so terrified about my life, about my future, about my body and everything that I had no control over. I “HAD CONTROL” of my life back then…I thought. I was on my path. Full speed ahead! Get out of my way. I’m following my dream. Actually…I’m chasing my dream. It can’t get away. My grip is so tight and I won’t let go. Keep on going and going and going and going. Well, guess what Energizer Bunny? You can’t keep going either no matter what those commercials say. Sorry but you run out of Oomph too!

Throughout these 10 plus years since I have been told by so many people older than me that I am too young to think the way I do. That I am too young to go through what I’ve gone through. That I should be going through all of this illness and crap when I’m older. Well, let me tell you all, I HAVE NO CONTROL AND I NEVER HAVE. I was powerless over what was happening in my body and my mind was bound to change. My life was bound to change! My outlook was bound to change! Change change change! Life is about change!

How could all of that not change?

I couldn’t work 2 jobs anymore. That was crazy to start with. I couldn’t be a Production Assistant for 12 hour days on my precious weekends anymore.  I couldn’t couldn’t with the couldn’ts. Suddenly my life came to a halt.

SORT OF.

I had to rest more.

I’M SORRY. DID I SAY REST?

What is REST? Well, that means I STOP all I’m doing to the best of my ability and sit my butt down. I can lay down on the bed. I get some quiet. I learn how to meditate. If I can’t stop I at least SLOW DOWN. Yes, slower is OK. Really. There are so many ways to rest. Forcing everything to a point of a racing heart is NOT RESTING. Nope. Everything in Fast Forward is not resting.

Actually, my life is usually better than OK but I didn’t know that until 8 years later when I was diagnosed with a second disease of lupus. A…SECOND…DISEASE……..OF…LUPUS….Now THAT ONE KICKED ME OFF MY FEET AND STRAIGHT ONTO MY BUTT and there was no getting up.

No question.

I hit a wall so hard it’s a wonder I even survived and I am NOT EXAGGERATING.

And my choices were simple yet so complicated for someone like me to understand. You see, simple is not simple. It can’t just be that pretty much everything in my life has to STOP AND SLOW DOWN and not just a few things here and there. This affected EVERYTHING.

I HAD TO CHANGE.

MY LIFE HAD TO CHANGE AND FAST.

I FELT I HAD NO CHOICE.

See, I used to say I had no choice. I had to stop working…for now…until further notice…maybe…no really…I still wasn’t feeling up to it months later…symptoms just kept kicking my butt…I needed Tender Loving Care from everyone but especially from ME. I could’ve gone back to work. Right. OK. And run around and been in an environment that was so toxic for me that I would’ve ended up in the hospital the next time. Sounds like a great quality of life.

It was ME. I had to change MY LIFE.

I had to take care of ME.

Why was that so hard? Why IS that so hard?

I know it’s worth it. I know I’m worth it. And it’s a work in progress…It really is about Quality of Life, not Quantity.

But when I focus on TLC and turning the attention of my TLC to me my life gets better. My life looks different, feels different, and even smells different. There are flowers to smell and see everywhere here in LA. There are trees with leaves that blow in the breeze. That is one of the most lovely sounds I have ever heard. There are clouds. Oh I have always loved clouds ever since I was a little kid. Give me a cloud to look at and I am thrilled. Everything else goes away. There is an ocean that keeps me Present when I can see it. Even driving by it changes my mood if I can see it. I am in the moment. Do you know how beautiful the moment is? Have you been able to feel your breath as you look at the vastness and the colors of the ocean as the sky and the light of the sun reflect on the ocean? Have you watched a seagull float along in the sea breeze? Even watching other people in the water puts a smile on my face.

Smiling. I do that so much more than I used to. I used to be told all the time to smile when I was in my 20s before the MS diagnosis. I had no idea I wasn’t smiling. I was so dang busy pushing and pulling and forcing and going that I forgot to smile. I had a frown on my face I was so intense. It’s a wonder I had any friends, family, work colleagues or anyone else who wanted to be in my life.

But somewhere along the way I forgot me. I still do sometimes and I am constantly working on bringing ME back.

And bringing my focus back to me, I see the shining emerald green glimpse of hummingbird. I see the butterfly off in the distance. I find myself sitting in my car listening to my favorite song and not getting out until I’ve finished belting it out to myself. And back to smiling because I find it so powerful. Smiling at others? Smiling at others and watching them smile back. It is so rare now for me not to connect with others with a smile. I have met some of the best people in the grocery store. We are all just people living our lives trying to get by. I have had lovely conversations in hospital building elevators with others about colors and clothing and my Muppet bag/purse.

I have sat next to some wonderful people while sitting in doctor waiting rooms. See doctor waiting rooms are tricky for me. I still can’t stand going to the doctor. In fact, I think in some ways it’s worse now because I have so much chronic illness doctor’s office visit fatigue if that makes any sense. I am sooooo done seeing so many doctors even though the appointments are currently usually further apart. Usually. But those waiting rooms can be so grueling and talking to others helps. If I don’t I feel closed off and not grounded. I find myself more nervous about the appointment than I was before. I find myself noticing that so many people are not feeling well, that they’re older and looking at me wondering why I’m there at whatever Specialist Doctor I happen to be at. It’s rough.

I have gotten to know the office staff at almost every doctor. I now have at least 2 friends at the Pharmacy I go to and I’ve had coffee with one of them. They are people too. Great gals actually. I have learned that it’s really not a problem usually to stand in line at a store. Why not look around? Why not watch a little girl or boy with their Mom and see what they see as they look around? Getting annoyed and irritated is probably going to make me feel worse. Life does not have to be lived so fast.

And what about finding myself through writing? I think I’ve always been a writer. I have written off and on all my life. This Blog has helped me get through what was a huge writer’s block for too many years. I need to write. It is part of my Being. Even if I write the hardest and deepest thoughts and words I still come out of it smiling. I wrote! I expressed myself!

And then there’s meditation, guided imagery, spiritual support groups, coffee groups, texts with friends, Facebook, Twitter, the online community in general, the longer conversations I get to have with people on the phone if I feel up to it (this one is still hard for me because being social is one of my favorite things but it also tires me out very quickly and as I get better I am more able to talk and maybe even visit but it’s still a one day at a time thing), the exploring of neighborhoods as I walk every day (by the way it’s been over 450 days since I started taking a walk every day!) I never know where I’ll end up. I have found the greatest local businesses that way. Some of the best coffee shops are in Santa Monica. I wouldn’t have known that before.

And sitting on my balcony especially at night is one of my favoritest things to do ever. I sit back in my lounge chair and look at the sky, look at my iPad (feel so fortunate and lucky to have such a supportive husband who bought me an iPad even before my lupus diagnosis and it has changed my life–the online world is a much more accessible place because sitting at the computer with the big screen can be hard for me for so many reasons), talk to my plants, and I can even have plants that I love and adore! And let me tell you, they respond so much better when I talk to them and give them love.

I have found faith and hope during these slower times. During these quiet times it has not all been fabulous. As they say every rose has its thorns and that is so true. There is beauty in life everywhere. There is also struggling, and excruciating feelings, and trudging, and crying, and anger, and memories, and reliving traumas, and temper tantrums, and grieving, and missing the old days when I thought my life was something else, and when I was younger before my MS diagnosis, and wanting to punch things and having very very hard times and hard days. I find I’m also having an identity crisis. Who am I? Who is Nahleen with MS and lupus? Will I ever work again? What will I do? Which idea am I going to pursue? Where is my life leading? Is this my life? I can’t live my life as someone who is identified only as my illnesses but it is a major challenge to break away from that when my life is lived in doctor’s offices talking about everything that’s still wrong with me, even talking about those few things that are getting better is still on the subject, just being there reminds me too much about my reality, having to prove my Disability to other entities who are trying to not help me, dealing with insurance issues, reliving the past for new doctors, taking over 4 hours to get going before I feel human in the morning, taking my medications, keeping up with my medications, keeping track of symptoms and the severity of them and watching for patterns, exercising so I can keep functioning and I could go on. Please let my life be more than that.

BUT YOU KNOW WHAT?

I’M OK.

I’m better than I was 10 years ago even before my MS diagnosis. I see the world in front of me more. I see the world. I am in the world. I am not on the outside looking in. I am NOT living the life I want to live on a whole just yet but isn’t that normal? I want to live a life WITHOUT MS and lupus but that is a lot to ask right now and to be honest it pisses me off and I can feel the rage right now even as I write this. But right now I’m in a better wave. I don’t know how long it will last or if it’s the new norm. Life is always happening and it is always in session. I have learned that time and time again. And I don’t know how I’m going to feel the next moment from when I write this sentence but for now I’ll take the feeling that life is a bit easier. How cool is that? I’m a bit more at ease. What a gift.

But it is not a life to be rushed through. Time goes by too fast. I was a tied up ball of knots rushing around plowing my way to the next goal in my mid-20s thinking I would someday rule the world, but it was never good enough. And in the past few days, life is good enough. Sure, I want more money, I want a bigger place to live in, I want that dent out of my car that someone so nicely put in there at a time I wasn’t around to see it happen, I want to be thinner, I want to feel so good that I am frolicking and skipping down the street and I don’t ever want bad things or hard things ever to happen again.

But that’s not real.

And I’M OK.

And the best part is there are parts of my life that are so very happy. I am happy with my husband and my Cleo Kitty. Corey keeps me laughing and on my toes. He is so incredibly supportive and always by my side. We are the best team I know. Cleo Kitty and I are best friends. We have been there for each other during each of our health problems for the past 3 years. She cuddles and plays and needs to eat and she demands her pets.

I also have a roof over my head, wonderful people in my life who don’t let me isolate even for one minute and they are from all parts of my life, 2 cars that run well, air conditioning that usually works, clothes to wear, food to eat, a bed to sleep on even if the mattress is so old there are hills and valleys in it and the list is endless.

I have a full life. A pretty darn good life. It can be very hard. And sometimes it can be easy but those times seem rare. Perhaps that will change. I don’t know. What I do know is that I breathe easier. I’m not nearly as tense. I feel much better than I did last year in July 2012 (and it doesn’t mean I am all better but I will take whatever I can get), I smile and giggle more than I frown and grumble. My bad days aren’t nearly as bad and intense and I recover quicker. And this is all just for today.

That is all I have. That is all WE have.

And that is OK.

Advertisements
Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Nahleen’s THANKITUDES!

THANKITUDES you ask?

Are you thankful and grateful?  Are you having a hard time choosing between one?  Do they come with “att-itudes” sometimes too?

SURE!

Let’s take a look at Nahleen’s Book of Nahleenism’s and oh look at that!  She’s just added a new word to her language: THANKITUDEFUL.  Definition: Feeling thankful, grateful, adding the attitude where necessary (or not–your choice).  Also can be written as THANKITUDES…

Quite often these days I find myself feeling thankful, grateful and full of attitude.  Sometimes I find myself feeling just one of those.  Is there a difference between thankful and grateful?  Hard to know really.  I think it depends on the day, who I am that day (I change a lot during the day don’t you?), what’s happening, how I’m feeling and whatever else affects my feelings.

So in light of the upcoming US Thanksgiving Holiday tomorrow, Thursday November 22, 2012, I wanted to share my festive version.

NAHLEEN’S THANKITUDES  (I spent too long trying to figure out if this was a one time only thing or if this could continue and well who cares right now?–I soon found myself not thankful or grateful and FULL OF ATTITUDE because of my own silliness soooo…)–without further ado:

 

AHEM…Let’s try again….no need to make it bold.  Perhaps I put too much pressure on myself…

 

NAHLEEN’S THANKITUDES:

1. I’m THANKITUDEFUL for ME.  Truly amazing to be feeling this way about myself.  This is a work in progress.  Quite often I wonder why I had to be born with such a messed up immune system and why my body had to be so sensitive…why it had to be full of what I conceive as inconveniences and the like.  I can’t stand that I have multiple sclerosis, lupus, probable IBS, food sensitivities like crazy, environmental sensitivities, sometimes asthma and I’m sure the list goes on and on.  And then there’s my crazy mind that beats me up, goes wacky like The Looney Tunes Tasmanian Devil, is meaner to me than anyone else would be and sometimes abuses me.  Then again, I am so much more compassionate towards myself and realize that self care is a wonderful thing.  It helps me to stop, look, listen, pay attention.  These illnesses help me connect more and more with people, with nature and its amazing beauty, meditate and quiet my head, stay more in the moment, and learn who I really am and how to love me for me.  Honestly, I am finally LEARNING HOW TO LIVE MY LIFE.  It sucks that I had to/and still have to go through all of this to get there but I finally am understanding that it’s THANKITUDEFUL that I am for ME.  I’m all I have.  I don’t get to run away and no one else seems to run away from me so there must be some good qualities somewhere.

2. I’m THANKITUDEFUL for my husband, companion, best friend, partner in crime, silly, giggle-making, talented, supportive, compassionate and BIG TIME BRATTY PANTS, Corey Blake.  If you don’t know this guy, you’re missing out.  Standing almost 6 feet tall you’d think that if you’re short like me, you’d have to look up to him and would NEVER be on his level.  This is so not true.  This guy talks to all he encounters as if he is equal with them.  He has the most compassionate heart I know and he is obsessed (in a good way or at least I like to think that I tame that back as if I control him-ha!) with KITTIES!  If he had his way, he’d fill his life with so many kitties he wouldn’t be able to find himself.  He wants to be a kitty for goodness sakes.  As you can guess, our Cleo Kitty is in very good hands.  He is also incredibly funny and talented on the stage and if you haven’t seen him do his thang on the stage or in front of the camera than you are truly missing out on a miracle in action.  He absolutely lights up the stage.  He is my inspiration for getting out there and just doing it.  I myself can’t believe he would stay with me with all that goes on with me with my health but he has been there from THE BEGINNING.  We had only been dating for 2 weeks and my best friend kitty (my sister growing up) passed away and he was there while I grieved.  Only 3 months later my dearest bestest Nana in the entire world who I adored more than I can even describe passed away AND he was there…the ENTIRE WEEK AFTER.  We traveled across the country together to pursue our dreams in Los Angeles, CA from New Hampshire and Massachusetts.  We built our lives here and have just celebrated not only 15 years together as a couple, but 6 years married, 12 years with our dearest Cleo Kitty daughter and 13 years here in LA!  He was with me when I was diagnosed with MS almost exactly 10 years ago.  He was with me when I was diagnosed with lupus over 2 years ago.  And he stays.  He also proposed to me on Waikiki Beach at night at the edge of the ocean, with the moon glowing and the stars twinkling (just to give you an example)—so romantic.  We had the funnest wedding ever and kept it the way we wanted it with our own silly flare.  Thank goodness we laugh and keep it light.  Our conversations travel on the path of silliness, to snippy snappy (our version of fighting), to serious, to meaningful, to heartfelt, to honest, to feelings, back to me giggling so hard by something he said that I’m crying and can’t breathe.  Can you tell I love the guy?  Sure he drives me crazy (uh oh, he’s reading this and might be upset with me for saying this or worried) but that’s because we are the closest to each other and we need someone to drive us crazy.  Apparently none of us are perfect.  And I’m oh so sure I NEVER drive him crazy.  Nope.  Through our ups and downs and such great and amazing times, it is us.  We are a team and I am so THANKITUDEFUL for that.

3. I’m THANKITUDEFUL for my daughter kitty, my Cleo Kitty.  That little girl of mine (is not a little girl in kitty age that’s for sure) is so mature and wise.  She teaches me how to live in the moment.  How to take things as they come.  To stop and play and enjoy myself.  That life is about living in the moment.  She is my BEST KITTY FRIEND.  I adore her.  She was a stray who had clearly been domesticated at some point in her very young life when she was found and really just wanted to live inside and not have to deal with the crazy outside world anymore.  When we met her it was love at first site for both Corey and I BUT it was clearly love at first site between Corey and Cleo.  I was just the extra for a long time.  She’d put up with me in order to be with Corey.  She was smart.  She knew the deal.  Over the years we have built our own very special and connected relationship that warms my heart.  She is my best kitty friend, my health partner (she was diagnosed with cancer in December of last year–almost a year ago) and we take care of each other.  We take turns.  She really does watch over me and I try to do the same.  She understands A LOT of English and gets frustrated that we don’t understand Kitty Language but we’re definitely getting better at it.  She plays, she loves, she sleeps, she is our alarm clock, she looks for support in all areas when she’s not comfortable with something, she is our companion and we love her so.  She really has done well and we had only 2 close calls with her life in the past few months.  One was from trying a new medication but she pulled through in about 24 hours and the last was almost 2 weeks ago.  This one might have also been a medication reaction but in all fairness, she has cancer and a weaker body immune system and is very sensitive with digestive issues and with some breathing issues we’re still trying to narrow down.  I am truly THANKITUDEFUL to have her in my life still.  She’s decided she’s not done yet and we are doing our best to help her feel comfortable and happy and if anything she is still very happy.  Every moment more with her is a true blessing.

4. I’m THANKITUDEFUL for all living supporters on my path.  That includes you.  These living supporters are people (friends, family, people I connect with out in the world, Facebook people, online people, Twitter people, the people I small talk with all the time, my doctors, any people in any part of the medical world I continuously find myself in, anyone who helps me or who I can help), dogs, cats, plants, the earth and nature.  You name it.  I am serious.  Any living thing.  I believe we are all connected in some way.  That doesn’t mean we have to all love each other or even like each other.  However we are all here for each other.  We are all alive and giving feedback in some way.  And as a part of this, I LOVE PEOPLE.  I do.  PEOPLE ROCK!  Sure some of them are more likeable than others.  Some I may not even really want in my life BUT they are there for a reason.  We all have something to give.  We are all just us trying to be US.  That is it.  And yes at times we can all be jerks (yes, Nahleen’s ego–you too–I still don’t believe it), and truly unlikeable (of course Nahleen’s ego has no idea of what I’m talking about) but it’s true.  And so to get away from this silliness I just wrote, I look forward to more and more connecting.  It is what keeps me going.  I think connecting with people is one of my hobbies.  I am so THANKITUDEFUL for you all.

5. I’m THANKITUDEFUL for this Blog.  I feel like this is inconsequential since the other 4 items on this list are so personal and why would I just feel this way for a Blog?  Well, it helps me write which is something I believe I’ve been meant to do for a long time.  I just need to write.  Not sure what that means but this is my 141st Blog post so I guess that means something.  I had no idea my Blog would go this far.  I had no idea I’d have this much to write and oh so much more!  I had no idea that anyone would want to join me on my journey.  I didn’t think anyone would care (again, about my crazy mean mind sometimes as posted above).  I didn’t know that I’d even be silly and post about ’80s songs or post any pictures.  I just didn’t know.  Once I jumped in this time I was ready.  It was time.  Thank you for being there.  It is so cool for someone such as myself who has to spend so much time at home resting and taking care of myself in order to get through the day.  So much self care to do and most often this has been added to my list of things I NEED to do to survive.  Sometimes it’s taken off because I need to pace myself and just breathe.  It all really depends.  And you know what’s also so cool?  Hearing from you!  Getting comments on my posts has been one of the coolest aspects.  I just love it!  Thank you to so many of you for encouraging me along the way and even way before I could really commit to it.  You know who you are.  You rock!  I am so THANKITUDEFUL for this Blog of exploration, silliness and connection.  I can’t wait to see what the future holds for it!

 

So that’s that.  I think that’s enough for today.  I really needed to write this.  The nudge has been on me to write something like this for a few days now and maybe I can breathe a little easier knowing I got it out.

Thank you thank you thank you.

DO YOU HAVE ANY THANKITUDES you would like to share?  I’d love to read them!  I have a feeling we all would!

Take care all.  Will write soon I’m sure.

 

 

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Blog at WordPress.com.

%d bloggers like this: