Posts Tagged With: MS

Sucky Side Effects Suck!

Posted on April 25, 2013 by Nahleen

Tried a new nasal spray twice in 3 weeks.

This was supposed to be cool–as cool as nasal sprays and meds can be…(YEAH RIGHT!)

It’s a combo of 2 nasal sprays I already take. The idea was to go down 1 medication and have 1 less co-pay. Sounds promising right?

WRONG!

Felt crappy the first time from it but I had too much going on in and around my body to know if that was it. Plus why would I think it was that if it was 2 of the same meds but in 1 mix? My doctors sure won’t believe me when I tell them.

Yesterday I was tired so I took the day to rest. It was nice. I thought perhaps I should try the combo nasal spray medication again and see how I do since I was feeling much better (yes in retrospect I agree that I didn’t have the best timing…).

UMMM HMMM…

Not good. Started feeling extra odd and a lot of confusing symptoms and sensations that were crappy. That’s nothing new. With all the stuff I have going on in my body it’s not unusual. So I thought perhaps my body was more than just tired and was starting to flare up from MS and lupus…

DON’T THINK SO!

Was up most of the night with some of the strangest aches, weakness and digestive discomforts I’ve ever had. This was too much. My body HAS calmed down a bit which is nice and most often it doesn’t wake me up and keep me up in the middle of the night anymore. When I’m feeling better I’ll have to celebrate that! Right now NO.

SOOOOO, no new combination nasal spray medication for me…

My body is still a bit of a mess and it’s been almost 24 hours since I’ve taken it.

NOT COOL! VERY FRUSTRATING! I DON’T WANT TO TAKE MEDICATIONS THAT MAKE ME FEEL WORSE. I HAVE DONE THAT IN THE PAST AND I AM SOOOO DONE WITH THAT!

GRRR!!!

Makes me wanna HULK SMASH something…THAT IS…when I feel better…

DID I MENTION IT’S HARD TO EXPRESS ANY BIG EMOTION WHEN FEELING CRAPPY?!?!

Yes I said ANY BIG EMOTION…

So for now I write this to you. Thanks for reading. Had to get it out somehow…

Guess I should go rest again.

HARRUMPH!

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The Path of Least Resistance

Posted on April 24, 2013 by Nahleen

Just posted this on Facebook and thought you all might like to get an update as well…

“*A PERSONAL WRITTEN MONOLOGUE TO CATCH YOU UP ABOUT ME–THERE IS A NEWER MORE ENHANCED NAHLEEN IN TOWN:

Well today has been quite a ME DAY of rest and simplicity and I think it’s the first time EVER that I have sincerely ACCEPTED it. My body and mind were desperate to stop and breathe and I let them.

2 weeks ago (feels like an eternity–can’t believe it’s only been 2 weeks) I met with an Attorney about Appealing The Private Long Term Disability Company’s Termination of my Disability Claim. I found out I’d be/been (highly likely) judged by my online Social Media presence as a “capable” writer on my Blog, as an active Facebook participant and as someone who Tweets quite a bit on Twitter (RETWEETING–because that’s so hard to do– and helping people mostly when it came to weather and disaster news mostly), so that’s probably one of the main reasons for the Termination of Coverage….I WRESTLED with this for a week and was so incredibly devastated about it. Alllll of my feelings from the past 10 years since the MS diagnosis to Present had surfaced and the flood gates opened.

Sure my case was still highly DEFENSIBLE because HELLO I have MS and LUPUS and that DOUBLE WHAMMY IS BAD ENOUGH! HOWEVER, I felt censored, punished and like some sort of criminal for trying to have some sort of life and COMMUNITY presence in my life. And OH was I tired of FIGHTING…sooooo tired. Last week (a week after the Attorney meeting) I FINALLY had gathered up the guts to tell me, the Attorney and the whole world that I had made the decision NOT to APPEAL and it has changed ME and MY LIFE. The details will be discussed on my BLOG at a later date when I’m ready. My Blog will NOT be taken down and it will tell my whole truth now more than ever. THIS WILL BE MY ADVOCACY. THIS WILL BE MY VOICE AND HOPEFULLY INCLUDE THE VOICE OF OTHERS.

I still have to finish up the final paperwork with my Attorney so that should be interesting because she wasn’t convinced I was done and wanted to talk to me in a week. WELL, that WEEK has FINALLY arrived and I will tell you that I am in a much better place. THE BLOG is too important to me. TELLING MY STORY AND GETTING IT OUT THERE IS TOO IMPORTANT TO ME! That is how I raise awareness. That is how I’m reaching others with common issues and health problems and people in general.

I will also mention here that in the past month my path has lead me to a true Chiropractic healer who is helping me feel better in ways I have been desperately trying to get my other doctors to address AND in the past 2.5 weeks this healing journey I’m on has connected me with a Specialist who NOT ONLY was once a Social Worker, but she is now both a Psychologist and a Psychiatrist and she is reaching me in my mind in ways that no other therapist has EVER been able to do.

My point is, this past month has changed my life. I feel like I’m finally starting to become who I’m meant to be. I HAVE FLIPPED TO A NAHLEEN WHO HAS BEEN INSIDE ME AND IS NOW BEING FREED! Not only am I walking towards lightness but I am walking AWAY from darkness.

So to end this written monologue I will share pieces of quotes from some very famous people of our pasts and I guess it’s now a Nahleen quote because it makes so much sense to me, “I have chosen the path of least resistance, and that has made all the difference.”

Thank you for reading…you all mean so much to me.”

To ALL of you who have commented, sent me personal emails and joined me on this Blog path, I apologize for my lack of communication lately. I will respond as soon as I can. You are very much on my mind and I have not forgotten you.

Love,
Nahleen

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175th Blog Post!: Doing My Best to Focus On the Positive

Posted on April 2, 2013 by Nahleen

175 Blog posts I’ve written!!!!!

WOW!

I am blown away that I keep on writing.  It’s been helping me so much.  You’ve been helping me so much.  All of you who Follow me, stop on by to read a few posts, comment on my Blog, email me personally (I know I still owe some of you responses) and who support me help me stay positive.

I was told by my Chiropractor last week that I needed to start adding EVEN MORE positive thoughts, elements, stuff, things–whatever it is for me to be positive–at least twice more a week.  He told me how some of his patients have done that.  As he’s been treating me, some emotions have been coming up like FEAR, anger and just being really frustrated.  Some of the emotions have been good too.  But in order to cushion the impact of the hard emotions (trying not to say negative because perhaps IT REALLY ISN’T NEGATIVE TO HAVE THESE HARD EMOTIONS), he’s highly suggested I add more “up” things to my life.

So yesterday while I was getting my apartment cleaned (one of the best things I have ever decided to let SOMEONE ELSE DO because there’s no way it would get done any other way), I found myself wandering a mall for awhile before sitting down, eating lunch and hanging out.

Here’s what I found in a store:

I LOVE THESE “KEEP CALM” SAYINGS…and this one FITS ME PERFECTLY!

HOW AWESOME IS THIS?!  I mean it is SOOOOO ME!  It’s a hue of purple, it’s a “Keep Calm” saying, it says “Sparkle” and I love sparkly things, and it’s on a plaque thingie that I can put up on my wall to remind me to keep calm and sparkle.  It really helps me to remember that it’s all gonna be OK and I can get through anything because if I can deal with having MS and lupus I can deal with a lot of other crap…EVEN IF IT FEELS LIKE I JUST CAN’T TAKE ANYMORE…and believe me it feels like that often.

So this was one of my first attempts at finding more positive things to focus on.  Today I had PLENTY to get my nerves all in an uproar and then I saw that in my bedroom sitting on my bookshelf at eye level and it reminded me to BREATHE and remember what’s more important.

MY LIGHT FROM WITHIN IS MORE IMPORTANT.

It’s not this other crapola that keeps getting in my way.

I’M WHAT MATTERS…

So after dealing with some tough stuff, I made sure to go walk on the treadmill in the “new” (I say it in quotes because it’s been in the apartment building now for probably a year but it’s “new” to me) for a bit and then head up to the sun deck, look at the sky and the world around me and remember what really matters.  It’s also incredibly humbling to see that I am a little thing compared to the rest of the world.  My problems aren’t AS BIG as the world so it helps to put them in perspective.

And then to think I’m well on my way to 200 BLOG POSTS!

SO COOL!

THANK YOU THANK YOU THANK YOU for being a part of my life.

I can’t wait to see what else is in store…well maybe I can…but to know I’m not alone helps a lot!

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Telling the Truth is Really Hard

Posted on March 27, 2013 by Nahleen

TRUTH: The past 24 hours have SUCKED mostly physically but mentally too!  There I said it!

I TOLD THE TRUTH!

DETOX IS HARD!

ANOTHER TRUTH!

Being on an emotional roller coaster yesterday for HOURS was REALLY HARD!

MORE TRUTH!

Feeling A LOT OF PAIN, FATIGUE WITH HEAVY LIMBS, SHAKINESS, LIGHT-HEADEDNESS, WEAKNESS, TINGLING, WAKING UP IN THE MIDDLE OF THE NIGHT WITH A HORRIBLE KNIFING PAIN ON MY RIGHT SIDE (making me freak out it’s my appendix or something crazy) AND HAVING TO RUSH TO THE BATHROOM (TMI–just getting you ready) ONLY TO HAVE MY BELLY MAKE THE LOUDEST RUMBLING NOISES AND THEN ACTUALLY HAVING THAT TRIP TO THE BATHROOM BE PRODUCTIVE (used to not be in the middle of the night and I would suffer for hours so that’s something) AND THEN HAVE THAT PAIN GO AWAY BUT FEEL THE DIGESTIVE AFTERMATH IS REALLY HARD!  BUT–THANK GOODNESS THAT KNIFING PAIN WENT AWAY AND HAS NOT COME BACK.

YES I’M YELLING!

PHEW!

It feels so good to get it out.

I have only had 2 Chiropractic treatments in the past week, BUT I have also added an Alkaline Water Detox prescribed by this Chriropractic Doctor added to my treatment so it has been extra potent.  I CLEARLY have a ton of acid in my body.

IT HAS BEEN 1 WEEK AND MY BUTT FEELS KICKED FROM 2 CHIROPRACTIC TREATMENTS?!

OY!

You know, I have heard over the years from all kinds of people on social media and elsewhere talk about all the “GOOD” effects of Detox of the body.  NOT ONE OF THEM THAT I’VE NOTICED HAS EVER TALKED ABOUT ANYTHING NEGATIVE.  Did they ever feel anything crappy going on in their bodies or was it just absolutely divine and magical with birds chirping with light breezes as they frolicked over the rolling green hills singing songs from the “Sound of Music”?  That’s what it’s always felt like to me.  So I have no idea if these people have EVER felt crappy.

Is it because they don’t want to tell the truth because Gawd forbid they look weak?  Is it because they really are feeling JUST PEACHY (although if you ask me I’d never say I was Peachy because I CAN’T STAND PEACHES so it would be the opposite for me if I said I was PEACHY.  In fact let’s all make that note now.  PEACHY for me is CRAPPY.  OK then.  Now that we’re all clear.  Back to my ranting…) KEEN?  Did I even spell that word right?  The point is, AM I THE ONLY ONE WHO HAS FELT CRAPPY FROM DETOX?  AM I THE ONLY ONE WHO IS NOW TELLING THE TRUTH?

MORE ON MY TRUTH:  Okay.  So for the past 24 hours I have wondered what wall I hit this time.  In some ways I haven’t felt like this in a long time.  Felt like someone kicked my butt and the rest of my body really hard.  What’s interesting is that the first 24 hours after treatment were actually QUITE GOOD.  I think I was on a mental high and my body was TRYING to follow along.  I felt so much mental clarity and relief and life almost felt like it was ALL good no matter what.  I almost wanted to skip down the street singing “La la la” but my legs weren’t QUITE up to it.  Oh and just to be clear, I didn’t feel up to frolicking through the rolling green hills singing songs from the Sound of Music.  I wasn’t THAT good.  That’s good right?

Anyway, I did so much in that 24 hours because I thought, WOW, I can do this.  This Chiropractic treatment stuff rocks.  It was ONLY the 1st Treatment that would be really hard at first.  Perhaps I’ll be feeling this later but not now.  LIFE IS GOOD.  I got home, made some medical business calls, wrote a Blog post, did stuff and things and I DID let myself REST a bit BUT THEN off I was running out to get groceries that evening while my mental hyperactivity was still on overload (I think now that I look back).  I mean, we NEEDED groceries and my head told me it was RIGHT then no matter what.  So I left at 6:30pm and by 7:30pm as I was almost done my ARMS started telling me they were really tired and didn’t want to work much more and then they were in pain.  Then by 8pm my BODY was done.  By 9pm my MIND was done.  And yet there was still some clarity so I stayed up way too late.  I CONFESS.  I didn’t LISTEN enough to my body at that point.

Got up for a dang Fasting Appointment the next morning to have blood work done with a doctor I have VERY mixed feelings about and thought all was going to be OK.  I was still OK.  Sure I was tired but Fasting Appointments are really hard for me.  My body with its MS, lupus, IBS and you NAME IT needs its routine.  No food means no medications.  No medications means my body is already unhappy.  No food yet already being active when on a normal day it usually takes me over 4 hours to really feel like I can go on with my day as a human being is not a good thing for me.  At least let me have some food.  PLEASE.  If my body lets me that is…

ANYWAY, after the appointment, I ate and I felt a bit more invigorated YET to be honest my body was starting to protest more.  And then I ran around doing too many errands at once when I should’ve just gone back home to at least get some more rest before doing them made my body VERY UNHAPPY before 12pm.  The appointment had been at 8:30am.

BY 12PM I had HIT A WALL.

ALL DONE.  Had to push to do the basics.  The emotional roller coaster (was told this would happen even more and be magnified according to my Chiropractor as the emotions are cleared out and released from my body and it was ALL part of the healing process) started for the next 5 hours at least, my body had a hard time letting me do the basics like get up and move around.  It was shaky and weak and in pain.  SOOOO DONE WITH ME.

So I rested.  AND RESTED SOME MORE.  Resting helps.

RESTING HELPS.

Phew.  Sometimes resting doesn’t ALWAYS help the way I want it to.  My body has been recovering ever since.  I’d get waves of physical symptoms into the night last night and then there was that time in the middle of the night of complete and utter pain and discomfort and I’ve been working through that ever since.

SO GLAD I CAN WRITE THIS.

Yesterday I wouldn’t have been able to write this in any way.  ALL OF ME WAS DONE.

DONE.

But this Blog post has been bubbling up to the surface ever since I FINALLY was able to really get up out of bed today.  EXTRA SLEEP HELPED TOO.  I HAD TO WRITE THIS TODAY.  I HAD TO EXPRESS MYSELF.  I know it is all part of the healing.  I call it EMOTIONAL HAIRBALLS.

Meanwhile at the same time, as I think about how my body is overall, I know it’s not a regular lupus/multiple sclerosis flare.  I know my body is flaring up because all kinds of healing trauma (WHAT?  HEALING TRAUMA?  Parts of me want to object to what I just wrote and argue with me.) because it feels cleansing.  It feels like all kinds of toxin crapola is being FORCED out.  My mind is clearer.  My body is clearer.  So strange to say that and feel it and NOT REALLY BE ABLE TO DESCRIBE IT.

So the FEAR comes up.  Is this Treatment too much for me?  How will I do this?  I DON’T WANT TO MAKE MY BODY WORSE.  I CAN’T MAKE MY BODY WORSE.  I DEAL WITH ENOUGH.  IT’S HARD ENOUGH.  But then the nurturing side of me comes in and gently reminds me that I am feeling better at the same time.  I’m going to NEED TO BE VERY UPFRONT with the Chiropractor tomorrow at my next treatment and tell him EVERYTHING that has gone on in the past 24 hours BEFORE he jumps right in and manipulates my body into its relieving craziness of the next treatment.  He had told me it would be hard especially at first and to try to trust and be honest with him and myself in all ways at all times about how I’m doing.  That we would adjust treatments accordingly.  He also told me I’d have to rest more.

That’s hard to do.  I’m TRYING to have a life and I have SO MUCH going on right now.  FINDING BALANCE is a whole other issue I’m dealing with.

WHERE DOES IT ALL FIT IN?

Well what I have to remind myself is that it all fits in the way it is supposed to fit in.  It will all work out and it will happen or not happen BUT the world still turns.  It doesn’t explode because “MY PLANS” didn’t work out the way I liked.

DO THEY EVER?

SO WHY DO I KEEP TRYING TO FORCE MY PLANS OVER MY LIFE?  It doesn’t work that way.

So for now I’ll go back to resting and doing THE BEST I CAN WITH WHAT I HAVE.  It feels really good to have communicated this today.  Thank you ALL for reading.  It means so much to be able to get it out and STOP HOLDING ONTO IT.  Something tells me this may not have come out if it wasn’t for this detox and new treatment journey I’m starting.

I feel much better and calmer right now and I will enjoy it while I can.

Take care all and please if you can, be gentle with yourself and your body.  Healing can be really hard but what I’m discovering is that I’m worth it and so are you.

 

 

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325 DAYS I’VE BEEN GRATEFUL TO TAKE A WALK

Posted on March 18, 2013 by Nahleen

-GRATEFUL to be able to move my legs.

-GRATEFUL to be able to stand up.

-GRATEFUL to be able to put one foot in front of the other.

-GRATEFUL to still be able to walk on my own with no assistive device.

-GRATEFUL to have taken a walk 325 days in a row as of TODAY!!!

Ten years ago today if you had asked me if I thought with multiple sclerosis I’d be able to walk today, I would’ve been afraid to even think of an answer. It was way too far ahead to even comprehend. Yet I’ve lived my life since my diagnosis of MS in 2002 as if one day I might not be able to walk…or I might not be able to walk as well…or I’d have an exacerbation of symptoms and I’d lose movement in my legs…or I’d be using a cane…or I’d have to use a walker…or I’d have to use a wheelchair…or that the MS would progress making it harder and harder to move my body all over.

Then there’s lupus that just had to make its way into the picture because I didn’t have enough to think about and that can also affect my walking. The joints can get very stiff, swollen and in pain and I hobble around sometimes. The fatigue with both can drive me crazy.

I know people with MS who have a hard time with their legs and are in need of assistive devices. I know people with MS who used to be in a wheelchair but aren’t now. I know people with MS who don’t have any problem walking at all. I am getting to know people with lupus who have similar issues. I myself have a problem with balance at times, I get the foot drop, my feet can give way under me and I can fall (hasn’t happen in awhile), I trip quite a bit, I’m clumsy, I have stiffness, pain and spasticity in my muscles in my legs that come and go. I have ankles that like to roll and that’s not necessarily from lupus. That can just happen. I can often feel like my legs just aren’t strong enough to go down hills so I’ll ask Corey for his arm just so I can feel more stable and not as wobbly. (That hasn’t happened as much since I’ve been walking every day.)

So EVERY DAY in the beginning of all of this crap, I used to wake up in FEAR that my body or at least some part of my body would not be able to move.

EVERY.

DAY.

Then as time has passed I’ve found myself often taking it for granted that I can even walk at all. That I get a chance to walk on my own two feet and take a stroll EVERY DAY is a miracle.

EVERY.

DAY.

I am blessed with the chance to STILL get up every day and be able to move my legs enough to WALK even for 5 minutes. That’s all it takes to take a walk. The POINT IS TO MOVE MY LEGS. I get to walk on my own still. I don’t know if that will ever change and I’ll admit I still have that FEAR cloud lingering over me like a veil it seems but it is just there because ANYTHING CAN HAPPEN AT ANY TIME TO ANYONE BUT NOW WITH MS AND LUPUS I HAVE AN INCREASED CHANCE OF VERY “UNFRIENDLY” (a friend used this word about her physical symptoms and I hope she doesn’t mind that I stole it), symptoms occurring that can be debilitating to my body and not only can they be debilitating BUT I will have NO IDEA whether I’ll be able to get that part of me back or not. AND I HAVE NO IDEA OR WHEN THE NEXT ATTACK/FLARE WILL HIT OR IF IT EVER WILL… Only time tells that part.

So at this point, as long as I can I will…

WALK.

AND WALK.

AND WALK.

IT HELPS SO MUCH. My legs have improved greatly.

I am truly grateful and blessed to still be able to walk.

WHAT A GIFT.

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JUST DANCE!…and while you’re at it play the bongos and tambourine…

Posted on March 15, 2013 by Nahleen

The past few days have been really hard and intense for me and I find I start to tighten up inside and clench up all my muscles which of course leads to flared MS and lupus symptoms and probably some signs of IBS…If I’m not careful I become a hard ball of dried up goo.  You know the goo I’m talking about.  Not the good goo.  Wait.  Is there even good goo?  What is good goo?  Why am I stuck on what goo is?

ANYWAY…

Thankfully my head has been clear enough to remind me to DANCE!

DANCE!

MOVE MY BODY!

SHAKE IT OUT!

I used to think that because I “felt” like I had no rhythm I couldn’t/shouldn’t dance…that because I “wasn’t” coordinated I couldn’t/shouldn’t dance…that moving my body in any way “wasn’t” dancing because I “thought” I wasn’t a good enough dancer…

LIES!

WHATEVER!

DON’T PUT A LABEL ON IT!

JUST MOVE THAT BODY FOR GOODNESS SAKES!

LET OUT THE TOXINS!

Can’t move very well?  Well I bet there’s a part of you that can move a little.  Perhaps it’s your pinky finger.  Well then MOVE IT!

Why don’t you try it now?  Really.  Take a moment.  It’s always good to pause and take a moment.  Come on.  It’s only a moment.  One little moment.  Now MOVE something.

How’d it feel?

You don’t know.  WELL MOVE SOME MORE.

TURN ON SOME MUSIC AND BOUNCE AROUND.  You’re probably at home and reading this and thinking I’m wacky.  Yes I am.  Try it.  Loosen up that body.  No BODY should be sitting around at a computer all day anyway.  It’s OK.  You can get up from reading this and try it.  And even if you’re not at home, tap that foot wherever you are, stretch those fingers out, tap those fingers, move your head from side to side, hit your side with our hand, stretch out your toes and if you do it enough someone else near you might do the same thing and before you know it it’s become a THING!

IMAGINE THAT!  A THING!  YOU CAN EVEN GIVE IT YOUR OWN NAME!

A couple of years ago I was in this health self care support group thingie (so fancy with my wording aren’t I?) and one of the meditations we tried was “Shaking Meditation” and/or “Dance Meditation” and it MADE ALL THE DIFFERENCE IN THE WORLD FOR ME.  You see, I hold it all in before I let it all out.  CRAZY I KNOW.  Tell me.  I’m working really hard these days on letting it out.  It will eat me up and I will feel crappy.  Sure my body might feel crappy from moving, but something in me will feel relieved.  My head might feel lighter.  The endorphins will have gotten moving for the first time in Ages and may even be yawning themselves because of the fatigue from my MS or lupus or you name it but I bet I’ll feel mentally brighter after they wake up again!  There will be some relief somewhere.  I might even be breathing consciously again and realizing I’ve been holding my breath or something ridiculous like that.

OXYGEN ROCKS.

BREATHING ROCKS.

So today what did I do to help my body and mind?  Not only did I take my walk and do my Physical Therapy but I also danced, played my new bongos and played my tambourine!

I KNOW!

I WENT ALL OUT TODAY and you know what?

IT HELPED ME SO MUCH!

My mood is better, my body feels looser and I don’t feel so clenched and tight inside.

AMAZING.

Sooooo, now I have more self care items to add to my list.  More dancing, more bongo playing and more tambourine playing.  Turns out that with looser wrists (thank you recovery) it’s easier to play the tambourine and it sounded a lot better.

Oh and the best part is:

IT’S FUN!

I KNOW.  HEALTHY AND FUN.

CRAZY!

So go on out there and DANCE!  MOVE THAT BODY!  SHAKE OUT THE WEEK!  SHAKE ALL WEEKEND!  PLAY SOME MUSIC!  BANG SOME DRUMS!

And if you get a chance, let me know how you feel and leave a comment.  I’d love to hear your feedback.

LOVE TO ALL!  THANK YOU FOR JOINING ME ON THIS CRAZY RIDE CALLED LIFE!

 

Now

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Happy 1 Year Anniversary Purple Hair!

Posted on March 12, 2013 by Nahleen

Wow!  What can I say Purple Hair?

YOU HAVE ROCKED MY WORLD!

YOU HAVE HELPED ME FIND THE REAL NAHLEEN!

YOU ARE THE REASON I SMILE EVERY TIME I LOOK IN THE MIRROR!

YOU ADD A SPARK TO MY SPIRIT TO KEEP ME GOING!

YOU–PURPLE HAIR–HAVE BECOME A WONDERFUL PART OF MY LIFE…

THANK YOU PURPLE HAIR.

1 Year Ago today my Purple Hair and I were introduced and it has been quite a journey.  Every day I’d get up in my foggy MS/lupus haze and think about how my day was going to play out.  Sometimes I’d dread the day or feel lost in my symptoms.  Sometimes I’d be sad.  But then I’d look in the mirror and see that I had PURPLE HAIR!  It’s not the cure for everyday frustrations or for my physical problems, but it sure has helped A LOT!

Because of my relationship with my Purple Hair, I have found the courage to be more of the Real Me: The Real Nahleen.  I have more spunk.  I have more confidence.  I smile when I see my purple bangs fall into my eyes.  I am more creative.  It has helped put more skip in my step.  My world has opened up before my eyes.  And everyday is a new day with my Purple Hair.  It seems to change color/shade daily.  Sometimes it’s because it’s washing out (I have to re-purple every 2 to 3 weeks depending on my life, longevity of the color and when I feel up to it), sometimes it’s because it feels like it, sometimes it’s because of the curl in my hair and quite often it’s because I’ve changed the hue of purple I’m using or the brand.  Turns out there are quite a few brands out there that provide all kinds of varieties of purple to wear in your hair.  Sometimes it comes out like a magenta.  Sometimes it comes out almost black with a few lighter streaks due to the bleaching of some of those streaks of hair.  If my hair is straighter the purple doesn’t show up as much.  Oh yeah and then there are the times perhaps I haven’t used as much purple during the next re-purpling or it stays in longer or it just does what it wants to do at the time.

Each purple I LOVE!  And if I’m getting low on purple in my hair I can tell.  I get more down and depressed.  I don’t feel that extra spark.  I don’t have the spunk…you know, that extra umpf!

And to think I was so scared to really go PURPLE!  What was my problem?  What is the world’s problem that they can’t accept more colors such as purple, orange, green, blue, teal, bright yellow or whatever the heck someone wants in their hair BUT they’ll accept the reds, the browns, the blondes that might as well be yellow at times.  Who cares?  It’s a color!  What’s wrong with that?  SERIOUSLY?!  It’s just hair!  Why not be taken as seriously?  Why not be treated as professional?  I never understood that before I actually had the purple hair and NOW I really don’t get it.

FOR GOODNESS SAKES IT’S COLOR!  THE WORLD NEEDS MORE OF IT!

That’s my world rant for the day I guess…but I digress…

The point is, I have learned that I needed this purple in my life.  I’m not kidding.  Ever since I was 10 years old I have wanted purple hair.  I tried some magentas here and there as I got older and some maroons BUT never did purple on my hair.  I didn’t want to make a mess.  That was one excuse.  I didn’t want to take the time.  That was another.  To be honest, it doesn’t take that much time.  If you have time to color your hair a brown, blonde, black or even red color than you have time to color it purple.  REALLY.  There are no extras involved.

Sure it can leave a stain.  Sometimes it looks like there was a purple explosion in the bathtub but who cares?  It doesn’t last.  It goes away, just like it leaves my hair.

What I have learned most since I started my relationship with my Purple Hair a year ago in March 2012 is that it’s OK TO BE ME.  And the MORE I brought that PURPLE out the more I was ME.  So here’s my advice to you all who are just chomping at the bit to do something funky with your hair, do it!  What are you waiting for?  I have cut my hair a lot shorter but I want to go even shorter and be more funky.  I’m still a bit nervous about that so I need to follow my own advice don’t I?  I guess that’s the next part of my path huh?

And if you have a color that you feel you really connect with in your life you NEED to bring it out more.  It doesn’t have to be with hair.  It can be with anything.  ANYTHING.

REALLY.

I absolutely believe that it will HELP YOU.

So PURPLE HAIR, HERE’S TO ANOTHER YEAR!  BRING IT ON WORLD!  WITH YOU PURPLE HAIR I CAN DO ANYTHING!

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CAMBRIA HERE WE COME!

Posted on March 8, 2013 by Nahleen

YIPPEEEE!!!!

Heading to Cambria today at some point when we can pull ourselves together! We have reservations at a spa/hotel/resort in a room that has a king size bed, jacuzzi style tub with spa jets, a fireplace, a pillow top bed, a spa to get massages and facials, supposed live entertainment on Saturday nights, a luxury continental breakfast in the mornings, a walkway that connects to a boardwalk that leads through a State Park straight to the ocean and the list goes on and on! I can’t wait!

Yesterday was the kind of day that went really well in the beginning and it all flowed really well and then about halfway through after making a business call it sank and it sank fast. I don’t want to get into it but this trip has come at the PERFECT TIME!

Not only is Cleo Kitty doing quite well (and we have a lovely lady coming to watch and stay with her who has bonded with her in the past which I tell you is a VERY RARE THING if you’re not Corey or myself), I am feeling much much better from taking care of myself and going to the doctor and taking antibiotics that IMMEDIATELY kicked that infection’s buttinsky and from the storms happening last night that ACTUALLY INCLUDED ONE HUGE BRIGHT FLASH OF LIGHTNING AND THEN A HUGE CRAZY CRACK OF THUNDER RIGHT OVERHEAD (which is VERY RARE AND EXCITING IN LA) so that helped me get some physical relief, I’m actually feeling up to taking a road trip (WHOA! LOOK AT ME GO!–haven’t been able to plan a road trip or trust that I could do one longer than 2 hours and that was pushing it…for AGES it feels like), I’m going with Corey and I can’t remember the last time we got away just the 2 of us to a place that wasn’t connected to anyone we knew (don’t get me wrong I love my peeps but we need some REAL TIME AWAY), and well IT IS JUST TIME.

So off we go at some point today. Part of this whole trip is the road trip. We will get there when we get there. I used to love road trips with Corey. We have the best time if we just go with it. I keep thinking we should be hurrying up and leaving now but then that’s not either of our styles to be honest and that would kick my already emotionally fragile lupus and MS butt that has made my physicality a bit fragile too today. So when it’s meant to be that we go, we go.

To be honest, after that phone call yesterday regarding YET ANOTHER BIG LIFE DECISION (HAVEN’T I MADE ENOUGH OF THOSE LATELY!? A GAL NEEDS A BREAK HERE AND THERE!), if I wasn’t already getting away and planning on running away anyway to try to relax and clear my head, I would’ve run away anyway. I have mentally had ENOUGH!

So enough of this writing chatter. Gotta get back to my self care so we can get the heck outta here.

THE ONLY DOWNSIDE?

… (sad face here) Leaving Cleo Kitty. I haven’t left her since the whole “cancer” episode (I say that because she is so resilient and awesome that she doesn’t seem to have cancer (really long story–but she does have some other serious health problems and sensitivities. Never did get a definitive diagnosis because she’s a kitty and didn’t need to be more traumatized than she already was for goodness sakes) and that was in December 2011. We are quite attached to each other and have been each other’s caretakers since then. So as much as I know it is for the best, it will still be hard. But we will be back Sunday night. And I have to remember that the fact that we can even leave her at this point is amazing. In November we had planned a similar trip to celebrate 15 years together and 6 years of marriage and had to cancel it because her health was so questionable and we couldn’t leave her. Now I look at her and it’s hard to believe that happened. She’s so in the mood to keep living and we finally got to the bottom of her health stuff too so that’s good.

Anyway, I keep babble-writing. Off I go!

Write soon!

Oh and to my new followers HI! Yay! Thanks for joining me on my crazy path. To my commenters–yay thank you for commenting! I plan on responding next week.

Have a great weekend y’all! I know I am not the only one going through this thing we call life and holy moly it can be hard and intense…

Love to all!

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THE COUGH DECIDES TO START NOW?!?!

Posted on March 6, 2013 by Nahleen

I’M COUGHING TODAY?! TODAY?!

I’ve been waiting for and fighting off something like a sick bug that I could feel trying to start for what seems like 2 months and it has worked. I have held it off. AND TODAY IT WANTS TO START GETTING BAD?

UM HELLO! COREY AND I ARE TRYING TO GET AWAY THIS WEEKEND TOGETHER TO GO TO CAMBRIA!

We’re overdue for it. This is supposed to be to celebrate 15 years together (actual Anniversary was in November) and 6 years married (in November too). We weren’t able to go because our poor Cleo Kitty was sick and I don’t blame her for that.

And all has been going pretty well with my health (I mean ups and downs and IBS stuff yesterday if you read my Blog post about that–it’s better if you’re wondering at least for the moment) and it’s been pretty manageable till NOW?!

NOW?!

I TRIED not to have any expectations about whether we would really take this trip but of course I have some. Of course I’m feeling like I should go into CRISIS MODE and think EVERYTHING’S OVER.

I should just crouch in a dark corner and not come out for goodness sakes. I mean, if the cough has started on Wednesday, how can I be better enough for Friday? I know how my cough is. And how can I get those “things” done I think I HAVE to get done in time for then?

WHY ME? WHY NOW? DANG IT!

So action time it is. No not running around like a wild mess (just…yet…anyway…). I got up, called my doctor and have made an appointment for 2:15pm. HOW COOL ARE THEY TO BE SO AVAILABLE? Oh and I get to see my favorite PA there too so another positive. I’m moving in the right direction. It is currently 12:45pm. I have to finish up writing this ASAP (and that’s true) so I can shower (always a big event for me with MS and lupus and now this dang sickness that’s coming on that has also turned into a fever–OK 99.1 but for me that’s a fever no matter what ANY doctor says) and drive over there and get to the solution ASAP. I have been told time and time again and even lectured by my doctors to not play with my cough. I have asthmatic tendencies that could EASILY turn into full on bronchitis or pneumonia especially with a messed up and compromised immune system so I CANNOT (emphasis on the NOT here) play with this. There is NO WAITING. If I feel a cough I do my best to get to the doctor ASAP.

And I have more of a MOTIVATION. Let’s kill this now. NOW.

DID I SAY NOW ENOUGH? You know, as if I have any control over a sick bug…..

Ha ha ha. Yeah right.

But I will do what I can to kill it.

Earlier this year I declared it was the year of OPERATION NURTURE NAHLEEN 2013!

Well…this is it.

OPERATION NURTURE NAHLEEN IS IN FULL EFFECT!

……….

P.S. I will do my best NOT to go past the NOW, not to go past TODAY and NOT to jump into the FUTURE which is only an illusion ANYWAY.

GOLLY I HOPE THIS HELPS AND WORKS.

I really really really really really (I can’t stress the reallys enough here) wanted to get away for a few days. THAT’S ALL. I haven’t gotten away in so long.

PLEASE.

I guess I’ll be flip flopping between Crisis and Operation Nurture all day. Suppose I’m human right.

Hmm. Interesting.

I’m a HUMAN…

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STUPID UNPREDICTABILITY!

Posted on March 5, 2013 by Nahleen

I CAN’T STRESS THIS ENOUGH! THE UNPREDICTABILITY OF MY IBS, LUPUS AND MS IS THE WORST THING EVER TO DEAL WITH WHEN IT COMES TO DEALING WITH CHRONIC DISEASES!

I know I was busy today. I know I was doing a lot of physical things. I know I can feel the weather coming (rain) on Friday. I know that I have IBS. I know that I have lupus. I know that I have MS. I know that I need to take care of myself. I know that the diseases are their own entities. I know they can act up whenever they want. I know I probably (notice my denial) pushed it today. I know that my diseases can flare up randomly.

I KNOW I KNOW I KNOW!!!!

BUT I DON’T KNOW…

!@#$%^&*(@ IT! (Insert swear word of choice here to express the feelings). No words can really fit for me to really express the frustration when it comes up.

There I was going along my merry way and then all the sudden my IBS just went BOOM in my digestive system and I started having stomach cramps OUT OF NOWHERE. WHAT THE?! I haven’t had stomach cramps in quite awhile thank you very much. I don’t want them right now. It’s actually been VERY NICE without them.

Sooooo, even though I’m almost done with stuff for today, I have to be done even sooner because MY BODY HAS DECIDED IT’S DONE.

…………………………..gggrrrr

So deep breaths I will take to calm down. Getting too worked up will set the stomach cramping on fire…

Time to rest and destress if possible…hopefully that helps.

It’s so UNPREDICTABLE it’s crazy. I haven’t been having a lot of stomach problems lately…I’ve been trying not to remark about it on purpose. But the IBS is still there. Yep. Hasn’t left. Go figure.

So now I do feel a bit better because I vented and wrote about it. Gotta calm down and destress and give in to my body. It wants love.

FINE! FINE! FINE! FINE! FINE!

Please let me eat tonight belly. Please…eating only toast is boring and doesn’t help fill me up…

PLEASE…

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