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I want out.  I want out of my head.  I want to be able to move on.  Yeah I can say that I don’t want lupus or multiple sclerosis but if I’m going to be stuck with them then I want to be able to feel well enough to do more than what I do.  I don’t want my life to be defined by doctors and medications and health insurance and disability and all kinds of crap like that.  I want to be defined by who I am.  I want to do more than what I’m doing.  Or is it that I want to do more or that I want to be more creative and more fulfilled?  I have a feeling it’s both.

This is where the blog comes in.  I can’t tell you how long I’ve wanted to write.  It’s probably been since I was born.  I wrote quite a bit in school and then lost it.  Then when I tried to bring it back out to express myself I had a block up or at least that’s what it felt like.  I had also gotten into using my hands more with television and film production and expressed myself that way.  Then in 2002 when I was diagnosed with MS the idea of writing about it started to creep in.  That was almost 10 years ago.  It has taken me 10 years to really try again.  Sure, there are older posts here on my blog from 2009 but I guess I just wasn’t ready and I know it hurt my hands and arms greatly back then to type repetitively.  Then when I was diagnosed with lupus in 2010 it really hit me that I needed to start writing yet again.  So I did write and I kept those writings on my iPad only.  Good place for them.  At least I wrote right?  Then I stopped again.  It was so hard to write and think about what I was going through and I was soooo busy trying to medically get better.

Well, I think it’s time to get back to me and what my soul needs.  So say I was born with this NEED to write and express myself.  Sounds like that’s what I need to do in order to get out of myself.  I need to get out.  A lot of the time I can’t seem to get out and go far physically or even mentally so I need to stay in and yeah I have a roof over my head but those walls can close in on me.  Thank goodness for a wonderful husband and the most beautiful kitty in the world who help keep me sane.  But I need more.  I want more.  I deserve more.  Hopefully writing can help free me.

I gotta get it out.  I gotta share it.  I gotta write it.  I gotta express it.  I don’t know if this makes any sense to you all but it makes sense to me.  Perhaps I won’t continue and will pause again…but I wrote today and I needed to get out of my head Just for Today.  Just typing this is helping me to feel better.  Let’s hope it helps.

Alright so it’s been awhile since I’ve posted.  I come from a place where it’s really hard to share a part of myself.  I keep thinking that a light will go on and I’ll be ready to share this part of myself with the world.  Why is it so hard?  Will I change the universe with my blogs?  Am I that much more special that I have that kind of power?  Or is it just that I feel that now more will be expected and required of me?  What will it all mean in the end?  Can I say EGO???

Not only do I have that conflict in me but since I’ve been dealing with MS, over 7 years ago the symptoms started, I’ve been feeling like I want to hide even more.  But there is something in me that says no way.  The time is now to come out.  To express myself to the masses or at least the 1 other person who will make it look like someone else other than myself and my husband might read this.  I’m not sure what it is but it is what leads me to write these blogs.  Do I give it more power so I can write more and feel more vulnerable after sharing myself with you?  I do know that I can’t argue much with that force within me and that eventually it will win.

Ah, that gives me a feeling of relief.  Yes.  That force inside me is my inner voice waiting to be heard and when I give it a little more leg room it is relieved.  I am relieved.

So what is wrong?  What will happen?  You might know me.  Great.  It’s about time.  I’ll let you know when I come out and then maybe you’ll read this too at some point and I won’t just keep it to myself.  After all, what good is a voice if it isn’t read, written or heard?

There’s something I must confess.  I am 2 people.  There’s the Me (in cooler weather) that is gung-ho and ready to conquer the world with more motivation than she can even handle and there’s the Me (in hotter weather) that gets overwhelmed easily and isn’t sure what to do next and sometimes even how to do it.  I think these 2 Mes existed way before my diagnosis of MS but have been magnified in the past 7 years of MS symptoms.

Right now I am the Hot Me.  The Me that needs to follow already established routines in order to function.  The Me that almost needs a script because her head is in a cloud of heat fatigue.  The Me that gets jealous when she watches the world live their lives around her.  The Me that assumes that these people have “normal” lives.  The Me that gets me into so much trouble because I end up with bruises on my body from mentally beating Me up.  The Me that needs to remember to take it one day at a time while it’s hot.  The Me who watches her husband put on warmer clothes while he’s in the apartment because the AC is on full blast and it still doesn’t sink in internally in My body.  The Me that forgets that one day the heat will end and that there is another, more confident Me out there just waiting till it gets cooler.  The Me that needs to be gentle with myself and keep it simple even more in order to survive.  That’s where I am right now.  When it gets cooler I’ll make sure to tell you about the other Me.  Right now I gotta go put myself in the freezer.

Maybe one day these Mes can unite and I can be a Me that is able to comfortably put up with any temperature.

Heat and MS don’t mix well for me.  It is times like these that there are three of me:  the meanie who is very angry that the heat is here and interrupting the flow of her life, the victim who feels very sad and vulnerable about it and Miss Nice who understands that it’s summer and will just have to take it one day at a time.  She knows that everything will be okay and is very gentle.  Right now I’m trying to incorporate all three in my life and let them know they each have a place and that if they all work together, then I’ll make it through yet another summer of heat in LA while having MS.

OK so first of all, I was surprised to see that I had as many as 3 hits on Friday and 2 today and I wasn’t one of them.  I’ll ask my husband Corey if he just clicked a few times to show me that I’m liked.  You never know.  But how cool is that?  I haven’t said anything about it and I haven’t tagged anything yet.  (I’m slow when it comes to this and am just finding my footing).  A few things came to mind this week…

I have a Disabled Parking Placard (story about that in another post).  Every 3 or 4 months I’m supposed to go get a regular blood test to make sure that my liver is still good from all the meds I take and I was a good girl this time and actually went to the hospital and saw the vampire so that my doctor wouldn’t yell at me again for not going.  What struck me as I drove in the parking lot was that all of the handicapped parking spaces were already taken.  My first thought is to immediately say that there weren’t that many and to rant about that especially being that I was at a hospital where I might expect to see a lot of spots for those of us who are disabled.  What occurred to me is the number of people who do need to use these spots and I started thinking.  Is it that more people are just biting the bullet like I did and requesting a placard?  Is it that suddenly more people are unhealthy?  Is it that the hospital is just so big that there are so many patients and there REALLY should be more of these spaces made available?  Whatever the deal, I still couldn’t find a space.  Now I knew I’d be OK if I had to park in a regular space and that I am fortunate enough to be able to walk very well on my own.  I use it to save energy more than anything.  But what about people who really do need access to these spaces especially when they are going to a hospital?  What do they do then?  Do they keep driving around the parking lot in circles until just maybe someone might leave?  Do they give up and leave after taking a ticket (and do they still pay)?  These are just some thoughts that come to mind now when I’m trying to park, thoughts that might not have appeared had I not gotten the placard.

I got rear-ended this week while minding my own business (strange to think) and turning left at an intersection that’s very close to my work.  My car is definitely OK and probably just needs some body work done and the seat doesn’t seem to work right but otherwise, I’m physically OK.  In some ways I wanted to blame the car accident for the stiffness and aching caused by my MS.  Somehow that sounded better.  Instead I had to worry about whether the jolt would start up anything with my MS or not and that wasn’t fun.  I can definitely say now that that wasn’t the case and I’m gonna make it even if I am irritated that I still need to go to the garage and make sure that my car really is going to stay in one piece and drive me from Point A to Point B (only 3 miles in between might I add).

And back to the posts!  I hope to get myself together enough to share more of me soon and get the guts to promote myself!  First things first.  I need to be comfortable with sharing my voice with you…

I had a great time at the fireworks on July 4th at the Culver City Highschool.  With live entertainment, a very clear sky for fireworks and the bright moon it was sure to be a good night.  Also, it was cold.  Yes, it was cold in LA on July 4th and that is unheard of.  As someone with MS with heat sensitivity symptoms, I can say that I was pleased.  I was also very very pleased to see such welcoming access to those of us with disabilities.  The Culver City Exchange must be known for this accessibility during fireworks because I couldn’t help but note so many people with walking aids and wheelchairs.  That clued me in instantly to the idea that this is the place to be for all.  As the night went on I noticed handicapped parking spaces, a lot of flat ground and handicap access port-a-potties!  Who knew those existed?  How cool is that?  You mean, those of us with wheelchairs even get to go to the bathroom in public like those of us who can get around on two feet?  Many many cheers to Culver City Exchange and Culver City Highschool for their welcoming of all types of American citizens and not just those who can get around easily.  It’s the “little” things that mean the most.  Thank you!  And Happy Birthday America!

I can’t tell you how cool it is to have my name for my website and just the first name too.  When I was a kid, I wanted to just be “Nahleen” if I were to ever be famous.  This will do for now that’s for sure.  So much more to come!  Happy 4th everyone!  Imagine life if we were still in a monarchy…Does Henry the VIII ring a bell?

Thank you to my husband Corey for setting up a website for me.  The journey has begun…