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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.

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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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Nahleen.com Is Expanding!

Yay!  I not only have a Facebook Profile now but I also have a Facebook Page with the same name, “Nahleen.com”!  I have now made my whole Profile public so feel free to join in the fun!  I have really enjoyed sharing all kinds of beautiful photos, other pages, inspirational quotes, silliness and anything else I can find on my own Personal Page.  I was sharing what I found personally helpful.  What has happened is that I have found out from all kinds of people how much they really like what I share compared to what else they can tell I look at.  That what I post really helps them.

I just knew it was time!  So here I go!  You can find me at: http://www.facebook.com/nahleen (Personal)–feel free to friend me and tell me and please introduce yourself (if you’re not already a Facebook Friend)–and at http://www.facebook.com/nahleencom (the actual Page connected to this Blog).

I’m very excited!  Please join me!  I look forward to connecting with you!

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125 BLOG POSTS!

Oh my goodness! I have hit the 125 Blog post mark!!!!!!

So cool. I couldn’t have done it without you so thank you!

It’s been a roller coaster week and I’m currently in a symptom flare (MS and lupus are FUN–NOT!) so I will try to stay positive (which I’m hoping will help me). I wanted to take a moment and thank you all for being here with me on this writing journey. I have always felt like a writer ever since I was very young and I have really struggled with it. In 5th grade I wrote a children’s holiday story and my teacher liked it so much that she tried to work with me to expand on it a bit and add a few more details (you know, to improve it) so that she’d feel comfortable trying to get it published in a children’s magazine (or something of the sort–what I heard was published) but I think I took her criticism so personally that I blocked her and it off and refused to change the story AT ALL because I liked it the way it was. And soooo, the story was not published. That blocked me and disappointed me for a few years. I still have the story and am hoping to feel willing to expand on it now after all these years.

Then I started writing more in middle school and either I didn’t want anyone to read it and kept it to myself or what I wrote was crazy serious deep (hello puberty) and my teachers asked for lighter stories. And then as a junior in high school I seemed to really blossom as a writer and all of my teachers highly encouraged me and told me they really thought I’d get somewhere with it and to keep expanding on it. Well, I expanded on it and that all really went well.

AND THEN in college I took one writing class and the professor was “not impressed” with my writing and told me I wrote too much and wanted me to get to the point. So here I was completely confused because one school of thought told me to expand and the other wanted me to cut it down. At that point I shut down writing. I may not have had I not been going into the high maintenance field television production that took up most of my time and focus. Production also helped me learn how to express myself in a very different creative way. I had to show you, not write it for you to experience. So, I veered off the writing path and took quite a journey into production.

Yet, there was always this deep soulful need to write. It was in me. It had to come out. But then I thought I had to be perfect. FEAR started to run me and it just never really worked. When I was first diagnosed with multiple sclerosis almost 10 years ago, I had people from different parts of my life who had nothing to do with each other telling me to write my story because of how I express myself. They told me I had a story to tell. They told me that I could really help others and probably myself. That it’s important to let others know what really happens with chronic illness.

And I tried, I really did. I tried too hard. I started up this Blog in 2009 and I think I wrote only 3 posts. Actually, I think I still have them posted if you want to check them out. Reading them now I know I still wasn’t ready. The real me wasn’t really coming out. I felt raw and vulnerable.

Meanwhile, people still said that I needed to tell my story. That I could really help. And that writer in me wrestled with my ego until it finally BURST OUT in March of this year. It has been over 6 months and I have no plans to stop. I had no idea where this journey would take me. I still have so much more to write.

Thank you to those of you who have commented on my posts, encouraged me, read the serious ones, read the long ones, read the silly ones, put up with the ’80s and partied with me, have gone on my doctor appointments with me, have shared my Moments of Peace with me, have felt MS and lupus with me, have read my complaints, have read my hope, and who are teaching me about me. You all play a part in who I am and for that I am truly grateful.

Please feel free to comment any time about any post (I would love to hear from you), to Follow my Blog, to share my Blog with others, to email me in private (you can find a link to my email on the “About Me” page), to friend me on Facebook (Nahleen Blake), to follow me on Twitter (nahleenblake), and connect in general. Oh and by the way, I’m thinking of starting up my own Facebook page where I’m hoping to share my favorite quotes, pictures, silliness, fun, stuff about me, stuff about you if you want, music, anecdotes of life, Blog posts, etc. Keep an eye out for that update soon. More to come!

And thank you all for being you. You help me to be me. And that soul writer in me is FINALLY starting to feel satisfied. I look forward to more of this journey. It has been truly amazing!

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A BIG OLE THANK YOU!!!

Thank You! Yes You!

You are reading this right now and I thank you. I wanted to send a little note along to you all and share my gratitude and appreciation for your support, encouragement, conversation, and anything else connected to a Blog that I know I’m missing.

(My head is not thinking straight. This heat is kicking my butt today. Mega slow motion…UGH.)

For years I was unsure anyone REALLY wanted to know my story. I mean, why me? There were lots of people who tried to tell me I had a story to tell and that people might want to read it. My thinking is that we all have a story to tell and I had this odd idea that since we all had a story to tell that mine wouldn’t be good enough or that you wouldn’t care. But you do care.

It finally clicked at the beginning of this year that it shouldn’t be about whether you all want to read or know my story but whether I want to share it. Then it became a NEED to share it because I was going to burst! I needed to get it out. There has been so much inside me for years…so much I needed to express. I used to write a lot when I was younger and I loved it. Then I lost site of it as I explored other creative paths (and because one college professor didn’t like my writing so woe is me I can’t write ANYMORE–dramatic I know) and built a wall to block my writing as high and tall as I could muster. I wanted to write about my diagnosis story with multiple sclerosis 10 years ago when I was first going through the traumatizing hell of trying to figure out what was wrong with me but I wasn’t ready. And yes, I think it took me nearly 10 years to take down that wall piece by piece.

And so March of this year was the time to TRY. Apparently I was READY. I couldn’t stop once I started. It was all starting to burst out the flood gates because now there was some freedom. It’s hard to get the crap out. It’s hard to be vulnerable and to tell the truth–to be personal and yet I’m learning it’s so important to get it out.

AND you have all been there with me. You responded to my Blog posts about MS, lupus, doctors, appointments, concerts, health, heat, people, ’80s, my moments of peace and the topics really are endless. You liked my posts on Facebook. Yes I’m on Facebook (I mean, who isn’t right?) as “Nahleen Blake”. My page is private so please send me a friend request and feel free to let me know who you are and how you found me. I love to converse on there with all kinds of people. It’s been great to catch up with old class mates from way back to new people and to hear your feedback about what I post and the messages/photos I post. I’m also on Twitter as “nahleenblake”. Feel free to follow me if you like. I would love it too if you responded to my Blogs and we opened up conversation. One of my favorite things is to connect with people. Please talk to me. I’ll be honest. It’s kinda weird putting myself out there to what feels like the “WHOLE WORLD”. You can also send me an email and there’s a link to my email on my “About” page.

THANK YOU. (And Corey–thank you with all my heart. You are my biggest support of all. You have coached me and loved me the whole way through. That means so much to me.)

You are ALL helping me to BE ME.

That matters most.

P.S. Anyone know of a human-sized refrigerator I can go in now to cool off so my MS doesn’t act up anymore in this heat????

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