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Dreaming of a Non-Boiling Fall Season…

It’s fr*&^%$#@! 95 degrees in West Los Angeles (over 100 degrees in the Valley) today (October 1st) and I find myself daydreaming about the Fall Season in New England where I spent my first 22 years…

Sure it’s actually quite typical for October to be really crazy hot in Southern California. Hence, the idea of fire season. This is usually the month when the fires can get really bad out here. The vegetation HAS HAD ENOUGH. And so have the people. It’s a wonder the people don’t melt and boil as well. The best part about the temperature is that the sun goes down earlier and it USUALLY (I feel like I’m jinxing us all in LA) cools off pretty well at night. USUALLY.

But the biggest tease these days is the Internet and the access to all these social sites where those in cooler climates are praising the Fall Season and how “lovely” it all is. I find myself drooling all over the wonderful pictures of the colorful foliage and wanting to jump in the pictures to get just a taste of it. I wish I had appreciated it more when I was there for 22 years. Funny how that works…

So while I sit here in my apartment with the AC at full blast so that my MS doesn’t go completely crazy on me (been feeling the heat quite a bit today even with the AC) and the blinds closed so I can live in a cool dark cave so that my lupus doesn’t go wacky on me (joints are hurting), I thought I’d come up with this list and fantasize away. We were back in New Hampshire/Massachusetts a year ago at this time and it was wonderful. I really thoroughly enjoyed myself and was feeling quite bouncy. I even found myself frolicking in the colorful forest. I was completely invigorated!

So here’s my Fall Daydream Drool List:
*colorful leaves
*dark red leaves
*lighter red leaves
*yellow leaves–almost golden
*orange leaves
*orangey/red leaves
*half-colored leaves still changing
*even the green leaves that have yet to change
*the breeze through the leaves
*watching the leaves fall from the trees
*the crisp cooler temperatures
*breathing in the fresh cool air
*wearing snuggly clothes
*cooler chilly temperatures but it’s not too cold and freezing
*hot cocoa
*hot coffee–pumpkin flavored coffee and other fall yummy flavors
*hot tea
*hot apple cider
*the steam rising from the hot cups of yumminess
*pumpkins of all shapes and sizes–not melting like they would out here on my balcony right now
*gourds of all shapes and sizes
*decorative corn
*special jams and jellies
*mums
*maple syrup
*maple candy
*maple donuts
*picking apples
*cider donuts
*pumpkin french toast
*pumpkin pancakes
*pumpkin baked yumminess
*cinnamon everything
*the way the sun light shines through the trees and the colorful fall foliage
*scenic drives to see the fall foliage
*lots of hills to drive through
*exploring the countryside looking at the fall foliage
*my eyes watering from looking at the deep vibrant colors
*country stores
*caramel apples
*caramel yumminess in general
*scarecrows
*Halloween decorations
*Halloween festivities
*FROLICKING through the fall foliage wherever I am
*sometimes even when it’s raining in the fall
*the bright clear days and the blue blue sky
*the sunsets–although we do get some pretty good fall sunsets here in LA too
*hayrides
*yummy fall smelling candles–yeah sure I can get them here but there’s something about burning them when it’s not HOT
*NOT having to turn the AC on
*sweaters
*scarves
*sitting and watching the leaves blow in the wind
*lakes surrounded by beautiful fall foliage
*a big field surrounded by beautiful fall foliage
*baking baking baking
*the festive feeling in the air
*the wood stove smell
*all of the wonderful FAIRS!
*eating too much yumminess at the Fairs
*bread bowl soups
*seeing my breath as I breathe outside
*the fall colors in general

And I could go on and on. I know I’m missing A LOT of stuff. Do you want to add anything? Please feel free to do so. I’d love to see what you have to share. And if you have any fall pictures you want to share, please please please post them here! I’d love to see them. I can’t get enough!

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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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Unpredictability is the Worst!

Lupus.

Multiple sclerosis.

‘Nuff said.

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150 DAYS OF WALKING!

WOW! I have walked every day for 150 days!

AMAZING! I would never have guessed that I could do that before Physical Therapy almost 5 months ago. NEVER. And how does that saying go? “Never say never.”

Hey, if that’s true, I’ll say I’ll never lose the weight I want to lose ever. Do you think that’ll work? So I’ll be losing weight from now on right? Ha! If only. But you never know.

I am so proud of myself. I think it’s really paying off. I make it a point to take a walk. It may be 5 minutes or 30 minutes. It all depends on what I’m doing. It may be outside, inside, a walking dance meditation or I march in place. The point is, I’m doing it. That’s almost 5 months of moving my legs.

How cool is that? I have multiple sclerosis and lupus and I have been walking EVERY DAY now for months. I have walked even during this crazy hot summer, through hard times, better times, illnesses and you name it. I have WALKED.

One day at a time!

And I don’t plan on taking a day off from walking any day soon…

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Song Writer?!

Lately I’ve been waking up with song lyrics in my head. These are new song lyrics. And I can hear the music and the singer! It’s just bits and pieces but it’s there. A couple of times I’ve woken up in the middle night and thought I’d remember it in the morning and I haven’t…OF COURSE.

DUH.

That’s why they say to leave paper and pen near your bed. OBVIOUSLY. I mean, I gotta be realistic.

This has been happening for the past few months off and on. For awhile I was given inspiration almost every night and I’d wake up and clamber around for the pen and paper I FINALLY put near my bed, and while half asleep I’d write down my latest creative gift. I’d throw on my glasses (I’m so blind) and try to write while lying in bed half conscious and hope I could read my writing in the morning. The only light I have is the light from my clock. I’d turn on a light but I don’t want to wake Corey and well, I’ll admit, the lamp near my bed’s not working. Yes, I know. Silly Nahleen get your lamp fixed, but it just hasn’t been a priority. Except maybe now it is…

Soooooo, the question is, am I a SONG WRITER?!!!!

Never (never say never) in a bazillion years would I EVER have thought I’d be a song writer. I didn’t think I was “clever” enough or something ridiculous. Honestly it never occurred to me that I would be.

But now I think, why not? I mean, I’m a writer. I’ve written poetry before. The world is wide open to me. The possibilities are endless. (And then my head goes in the fantasy direction and pictures myself having this glorious career in music and all is well…oh the fairy tales.)

I JUST CAN’T THINK TOO HARD ABOUT IT.

Isn’t that really the point????

I’m sure that’s why the lyrics come to me in my dreams. That way maybe I’ll accept them for what they are and they haven’t passed all the Nahleen barriers…

So today I woke up with more song lyrics, the voice and the music in my head. These words are sticking with me big time. I wrote them down and then (GASP!), I recorded myself singing them on my phone. SSSHHHH don’t tell anyone. SCARY! And then I found myself asking my husband to help me record it on our computer. Weird.

WHO AM I???

Am I a song writer?!

These lyrics were so profound to me this morning that I feel the need to share them with you:

“Do what you need
It will all work out.”–Nahleen Blake Copyright 2012 (ha!)

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Picking Up the Pieces

Oh my goodness. What a weekend it was! I am so relieved to get through it.

On Saturday, it was 104 degrees here in West Los Angeles, CA! Crazy ridiculousness! Thank goodness the AC was working. However, it was still hot in the apartment if you ask my MS and lupus. OH yes it was. Yet, at the same time, somehow I got out with Corey to run some errands. I needed to get away from the building. Like in a car get away. I hadn’t been in a car to go anywhere in over a week and my little visits to the sun deck and my walks around the block just weren’t cutting it. Nope. So for sanity’s sake I got out and it was good to do so even though my body was yelling at me.

On Sunday, it was a bit cooler but still too darn hot. And it was an awful day because our Cleo Kitty (who’s been doing quite well since her cancer diagnosis in December 2011) was very very sick and we really weren’t sure what was going on. We think it was a bad reaction to medication but we’re really not sure. It was one of the hardest days I’ve had in a really long time. And the GREAT news today (Monday) is that she’s doing much better and almost seems like herself again. She didn’t eat for 24 hours. Very scary…when she did finally eat a little bit it was so exciting!

Meanwhile, I’ve still been fighting this small intestine bacterial infection. So while it was so hot and then Cleo was sick, my stomach was churning at times. The good news is that the infection seems to be getting better and I’m functioning more in my life. Today I stopped taking 1 of the 2 antibiotics I was on to treat it so hopefully that helps a bit to clear my head. I tend to feel a bit woozy on them.

So needless to say, we’re trying to settle back into a norm here. Thankfully it isn’t AS HOT here and Cleo’s recovering. I feel so blessed and grateful that we are given the gift of more time with our little girl. She is truly very special and definitely a fighter.

And as much as I feel like I SHOULD BE hitting the ground running, there will be no such thing today. I have a few more things that need to be done, one errand to do which will help me get out and otherwise it’s resting with Cleo.

Gotta give myself room to pick up the pieces and recover in all areas. Most of it can wait.

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Hope

I have hope.

And it’s in the forefront of my mind, not somewhere in the back being pushed aside by yuckiness.

It’s been a really hard week for me. I’ve been dealing with this small intestine bacterial infection and the antibiotics that are sent there to go to war with it. It’s so not fun when there is a war in my digestive system. Talk about feeling messed up!

And then for it to be hot, humid, have lupus and multiple sclerosis on top of it!

UGH!!!!!!–And that doesn’t even come close to explaining it.

So this morning I woke up with hope. I could feel that it had somehow made its way closer to the front of my mind again. I am feeling a bit better. I feel like I’ve turned that corner and can glimpse the “feeling better” part of it all.

The yuckiness has been coming in waves…so for the moment I’ll do my best to be content with where I am.

I’ll sit with my hope and see what happens.

Thank you all for being there. It helps a lot.

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Little CHOMPERS

Wait. Wait. Wait.

Feels like that’s all I do. Isn’t that what human nature is about?

Why is that so frustrating?

I am currently on a digestive antibiotic treatment (basically detox) for yet another small intestine bacterial infection. I think this is my 3rd time going through the treatment. Right now I’m trying to get through day 3 of a 15 day mega treatment regimen. Needless to say it is no fun.

I’ll probably always remember the words of my Gastroenterologist, “I hope you get sick. That means it’s working.” Well, that was encouraging. We all want our doctors to hope we get sick right? Yeah, no not really. However, his point was clear. This will make you feel yucky so that you can feel better again. And you know, that first treatment was the hardest because my body had already been through a lot and it was the first time in probably years of carrying this infection (scary creepiness) that it had been told to LEAVE and that it was TRESPASSING and it fought back really hard. I felt big time crappy. Thank goodness I fulfilled my doctor’s wishes of hoping I feel worse to feel better…

And what’s that about too? How come so many of our treatments depend on us not feeling well before we can feel better? Not a great way to encourage anyone to “take care” of themselves if you ask me.

But here I am. Doing the darn treatment again. Why? Well, because I don’t want this infection invading my body. I have enough going on. I can’t help but imagine these little CHOMPERS of meanie bacteria inside my torso with big teeth and eyes of fury CHOMPING on everything they shouldn’t be and wreaking havoc in my system. Scary right?

So I’m gonna take something that doesn’t CHOMP on me but CHOMPS on them. So there. But see when they’re CHOMPED on I in turn feel the next battle and feel the wrath of the purge. Ooooh. I like that. THE WRATH OF THE PURGE.

Yeah, probably TMI but we all go through digestive things…

So that’s what I’m doing right now. Today I’m going through waves of nausea that come on really hard and then go away whenever they like and then I get these glimmers of physical and mental clarity that I didn’t realize had been missing for awhile. So this idea of “better” is there. It’s dim BUT it’s there…

Confusing but it’s time to say “Buh Bye to those Little CHOMPERS”. AGAIN. They are not welcome.

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Rough Week

Thought I’d check in.

IT HAS BEEN A ROUGH WEEK.

Monday was a Holiday and I was still recovering from feeling yucky over the weekend.  Thank goodness Tuesday worked out with the Pulmonologist and all of my reflection because then the whole week wouldn’t have been so great.  Then again, it was a lot of hard work going to that appointment and being out in the heat.

So then Wednesday comes along and all chaos breaks out because the AC’s not working in the apartment.  In fact, it’s more like heat was coming in the vents and the temperature was rising by the minute.  It’s a long story but it’s not looking good for the whole building at this point.  Sure, the AC is working a bit right now thank goodness (nice bandaid they put on it I guess) but it’s only temporary and I was told it would take months to really get it up and running again.  Hmm, needless to say I was not happy about that since my MS and lupus continue to be so dang sensitive to the heat.  Oh and to top it off, I can’t get the YouTube links to work on my ’80s Blog post for this week so that’s been delayed STILL.  Geez.  Looking into that.

Thursday’s been a catch up day for me but I’ve had to reconfigure my whole day and my health depends on as much routine as possible.  So in order to make sure I’m able to get some stuff done before the AC “might” stop working again today, I had to go to the grocery store before my shower and exercises (I feel much much better if I do my whole self care regimen first usually) and then eat, take a shower and exercise–all the while hoping the AC wouldn’t go down again.  I know I’m blessed to have AC.  I’m truly grateful.  BUT life sucks without it.  My body started acting up RIGHT AWAY as it is getting warmer.  Sucks big time.

And tomorrow I need to see the Gastroenterologist because my digestive symptoms are starting to act up again and I want to address it sooner rather than later.  UGH!  I really don’t like going to the doctor on Fridays.  They’ve half checked out for the week and I’m pretty much done and spent from the week.  Sooooo, this should be interesting.  Here’s hoping he can help me and it’s nothing too serious.  As if I need more symptoms and health stuff to manage.  Please if you can, send along good thoughts for me.  Since that appointment is happening I may not get a chance to post my Moments of Peace but I will play it by ear.  I may need to be reminded that there are such things as peace.

OK.  Gonna go now.  Gotta rest.  My body’s done with me.

I hope you’re all having a better week than me.  I am aware that I’ve had worse times for sure but it’s been quite a hard one and I’m feeling tired and bothered.

Take care.

 

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Reflection: It Started With An Emergency Room Sign

The sign with an arrow supposedly pointing where the Emergency Room was, still sat on the construction wall at the hospital. I balked at how there was still a missing building after all these years and just piles and piles of dirt being moved around.

WAIT. How long had it been, I thought? How long had I seen bulldozers at this site? I could feel my mind’s wheels turning. It had to have been before I became severely ill over 2 years ago and could barely hold myself up on the seat as Corey “rush drove” the car down Santa Monica Blvd. I remembered that same Emergency Room sign that faked us out. It wasn’t a sign pointing into the entrance, it was a sign telling us what street to turn on next–vaguely explaining the location of the actual ER. Talk about a let down. I have never wanted to find an ER so badly in my life. I felt as if my head and body were hardly together and I was so incredibly out of it and nauseous. I really didn’t know if I could make it any longer in a moving vehicle without vomiting. Little did I know, 2 months later I’d be diagnosed with lupus. CRAZY.–And after that I’d know the location of way too many doctor’s offices, where to get bloodwork, the best places to eat, the best places to walk, where to park, which building had which doctor, etc.

*****************************************************************************************************************

THAT was 2 years ago.

Today, as I walked with a bit of a spring in my step down the street even after seeing that Emergency Room sign (I used to cringe and get a twinge inside), I thought about what my Pulmonologist had just said to me a few minutes before that at my appointment. After chatting for a bit, he started reminiscing about how I was 2 years ago. How I had such a hoarse voice, my sinuses were out of control with a major chronic sinus infection, I still had a deep cough that indicated I had a pretty chronic upper respiratory infection that just wouldn’t go away, I had horrible post nasal drip, my throat almost almost always hurt, I felt awful and was very low on fatigue and I could hardly hold my head up to look at him. Now after 2 years of a very strict, proactive and aggressive medical treatment plan (medications including antibiotics over and over again for months, ointments, sprays, taking all asthmatic medication away because it was irritating more than helping, sinus rinses every day, numerous breathing tests, rest, lupus treatment, and all of my other medical care enhancements, him always taking my calls within the SAME DAY, etc.), my voice is much better. I told him today that I thought my voice was still hoarse and he said it was nice to be able to hear me. He used to have no idea how I was able to even talk let alone breathe at all. And to think, I only saw him at first so I could make my Neurologist happy and he’d say my breathing was OK and I would be cleared to start taking the new oral multiple sclerosis medication, Gilenya.

The BEST part of the appointment came at the end. I am still BLOWN AWAY. Call me STUNNED. He said, “Call me if you need me. No need to schedule an appointment. I think we know by now that we communicate when needed right?” and I stumbled all over myself, even stepping back to regain my composure, and said, “Um, yeah. Yeah we do. REALLY? I don’t have to schedule an appointment at all?”. And he shook his head a bit and said, “Nope.”.

My mouth dropped and I felt like at least a layer of weight had been lifted from my shoulders. AMAZING! I wanted to run down the bleak and clinical hallway outside his office and yell to everyone (not that anyone was there) that I didn’t have to schedule an appointment. I had graduated–at least from one doctor anyway! In the past, he had always wanted to see me in a few weeks, a month, then 3 months, then maybe sooner depending on what was going on, then in 6 months (THAT WAS HUGE) and now this! An OPEN ENDED commitment! NO WAY!

I’m still baffled.

****************************************************************************************************************

So there I was taking my walk down the street after passing that Emergency Room sign and thinking about just how long they’d been doing construction on this building and WONDERING if they’d EVER get it finished and it all started coming back to me. Waves of awareness were flowing in. Flashes of the entire 2 years of good and bad and the journey I’ve taken. This isn’t necessarily unusual for me to reflect but the context was completely different.

I AM GETTING BETTER.

It’s slow. Holy moly is it slow–in my mind. BUT part of my journey was finding out that I was a major physical and mental mess and it was going to take a lot of patience (and still does) and one foot in front of the other to get to get healthy. I still have quite a ways to go but I NEED to have hope. Today gave me some more of that.

HOPE.

With the sun (lupus) and the summer (MS) messing with my mind, it is hard to have perspective. Everything acts up in my body and I feel trapped more than during other seasons. I can’t really ever stop being hot. I can’t even really get away from the UV rays (fluorescent lights bother me too) so I’m always just trying to TRUDGE my way through it all and it is HARD.

–By the way, at this point I could point out to the hospital authorities that their Emergency Room sign isn’t that accurate about the actual location and they need to fix it. Do you think they’d want to hear from me about that after all these years? Yeah, I don’t think so either.

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