Posts Tagged With: Journey

Diagnosis Part 5: MRI

I looked back on the last time I wrote a part of the “Diagnosis” story of my life and saw that it was on 05/17/12. It has been over a year since I wrote about the story of my diagnosis. That is how painful and hard my story is and how excruciating this next chapter is.  I had to be so ready to write it that I was bursting at the seams! Lately I have found it very challenging to come up with the words. I am a writer with too many words and no words. I truly believe there are not enough words in the English language to describe so much of what I’ve been through.

BUT IT’S TIME. IT’S TIME TO GET IT OUT. IT’S TIME TO TAKE ANOTHER STEP TO BE FREE OF THE TRAUMA.

As you can tell from the title, my focus will be the first MRI that changed my life. THE MRI.

Here goes. I know you’re all here with me so I’m going to jump in. I can already feel the adrenaline of anxiety rushing throughout my body. The emotions are rising to the top. Those really really hard emotions. I can do this.

It’s November 2002. I’m 25 at what I believe is supposed to have been the Prime of my life. Or at least I “believed” it was supposed to be. I gotta admit, if that year was the Prime of my life then I’d have nothing to hope for. That year my family had decided to have a family reunion of sorts with my Mother’s side of the family for Thanksgiving. We were all going to meet at my Grandpa’s up north in Monterey, CA and it was going to be a grand ole time! My sister had planned on visiting me in LA for the first time the week before Thanksgiving and we were supposed to hang out and cause some trouble before the family shenanigans started.

Looking back I’m not sure what I was thinking when I scheduled my first MRI to be at night on the first night my sister was visiting. I mean, I know why I scheduled it at night. I had to work during the day. My sister and I met at a small mall for lunch and she was going to hang out for awhile before I could get out of work. I was scared that day but on top of the world. I can remember feeling so proud and so “up”. My sister was visiting MY WORLD. I was going to show her MY WORLD. I had seen HER WORLD before in the past but this was mine. She’s older and I was so proud to show her LA, to show her I was “making it” out here. Still not sure what “making it” means but I digress. I can remember walking down the sidewalk at this mall and looking for her and thinking it was a pretty day and oh by the way, I had lost almost 50 pounds so I couldn’t wait for her to see that too. Weight has always been a challenge for all of us in the family so the idea that I could even lose 50 pounds was AMAZING!

Anyway, we met up, had lunch, I took her on a tour of my workplace and I was so so proud to do that. Look Lori, I work at a television station! I’m really starting to do what I came out here to do! Those were the thoughts in my head. Isn’t it weird how we can bring ourselves back to our past mindsets and know they’re familiar but almost not recognize them? That was over 10 years ago. I have been through so much since then. My mind even feels different.

I don’t remember much until I showed up at the hospital in Burbank with Corey and Lori and had to fill out the paperwork. Actually, much of that is a blur. I was so nervous. I’m sure I had decided to just have the MRI then because I had to wait weeks for my HMO at the time to process all the red tape to even approve an MRI for me so I just wanted to get it over with. Plus I had had sooooo many medical tests by then that had come up with NOTHING that I might as well get this done. If I didn’t do it then then I’d have to wait till after Thanksgiving. On a side thought, I wonder if that would’ve changed much of the course of events?

I then remember being called by a lady to “Come on in and we’ll get you started” and she lead me through white hallways. Please tell me, why must all hospital hallways be white or yellow? Why can’t they be calming colors or fun colors? And I know they’re supposed to be sterile but some decoration of some sort would be nice. And about the fluorescent lights…PLEASE GET RID OF THEM!

So the next thing I know I’m being sat down at a small table to the side in the middle of the hallway it feels like (at this point I was so not used to being in a medical fishbowl and everything felt like it had to be a secret and why were we sitting in public–even though no one was really walking by or anything) and this nice lady with long dark hair (blurred out everything else) sat me down, pulled out a pile of paperwork and a pen and proceeded to ask me questions I could not answer. That was the first day/night I ever heard about fibromyalgia. The who the what now? That was the first day/night I ever heard I could have symptoms of fatigue and that they were real. That was the first time ANYONE had ever asked me if I felt any real pain and where and did I have any other autoimmune diseases? What are those? Why was she bringing them up to me? That was the first time for so many things. I think I was a medical virgin or something. It was all so surreal.

Back then, the MRI machines (this was only 10 years ago) were very different than they are now. They were long tubes and they were dark and they were skinny. Here’s my thing. I was so much skinnier and yet I felt cramped in there. How could anyone bigger than me fit in there at all? I don’t remember much of the process just yet but I know I was hardly wearing anything. I had to take off all metal, all jewelry, my bra with the metal underwire, my pants with even a hint of a metal button (don’t think the button was metal actually). To be honest I can distinctly tell you what I was wearing that day. So weird. So much of it is a blur but what I was wearing is clear as a bell still to me. I was wearing my favorite navy blue long sleeve button down shirt that I had just bought in a size smaller due to my weight loss and I was so proud of me and of it. I was also wearing khakis that I don’t think I’d be wearing now. Not that I’d even fit in these clothes now but still. At the time I was wearing contacts so I didn’t have to worry about not seeing and feeling vulnerable that way and I had to wear a very thin white hospital gown. I felt so vulnerable and I also knew I was claustrophobic but I didn’t know how much because luckily I had never been put in that situation before.

These days I have had much better experiences with MRIs. I usually have one a year. I believe I’ve had at least 15 MRIs but if I count any that have been done in a row in the same session (meaning 4 in a row with all kinds of machinery and equipment locking me down and in and not being able to move for OVER 2 HOURS) I’d say it’s close to 20 by now. Each time they’re different. Fortunately, the technology is so much better and the MRIs I have had have been shorter, a bit wider, some of them have music and I don’t have to take off much of anything. The ONLY thing I usually have to take off is my bra still but that’s it. Why? Because they are usually only interested in my brain to see where lesions are for MS. Why did I have 4 in a row once? Well I was at USC where they have state of the art equipment and my MS Specialist Neurologist at the time wanted a whole picture of me. The technicians usually ask me if I want to take a mood enhancer drug of some sort to help me not care about the experience and I have told them No. I like being with it afterwards. Then again, if I EVER have to do such extensive MRI tests AGAIN that make me stay in one position for 2 hours then I will have to take a drug. I WILL NOT DO THAT AGAIN COMPLETELY CONSCIOUS. I was in so much pain from not moving and I was told that if I moved even a little bit then they’d have to start over. Plus it can be extremely hard to get my head out of the “tunnel mode” and back into the big wide world with no tubes enclosing me. Oh and I have had an Open MRI before but to me it was worse because there’s no tube BUT it’s like they put you inside a sandwich of a top and bottom of a machine and you can see out the sides but it’s not like you can move your head to see them and all I kept thinking about was how it was going to crush me or the machine would eat me or something. But I digress.

You know, A LOT of people knew what was going on with me at that point and a bunch of them had had MRIs before and they all had different ideas of what they were like and some told me that they were awful and some told me that they were easy and so on…However I will tell you this, if you have never had an MRI before I will not tell you what it’s like for you. I will only tell you what it was like for me if you ask. I will however tell you that I’m sorry you have to go through that and wish you all the best. My experience was different than that of anyone else who told me what their experience was like. In fact it was so unique and traumatic that it’s so hard getting over it still which is why it’s so important for me to share with all of you what happened and to get it out.

Anyway, when the paperwork was finally done and I already was so nervous my heart must’ve been beating out of my chest at that point and I was in the paper thin white gown, I was lead into the room with the MRI. I remember the room being a yucky yellow and I saw this big machine and a little circular opening into darkness was there. I knew right away this was the MRI. It’s fight or flight right? My head was running away so fast yet my body stayed put. I’m sure I tensed up all over the place. I’m sure my breathing was labored. But I toughed it out. I could do this. Oh yeah and the room was cold because the machine could overheat fast. Plus it was already so so loud in there just from the monster machine. So they had me lay down on the thin flat cold table and locked my head in telling me not to move it. They put earplugs in my ears or headphones on (don’t remember), asked me if I was OK–UM does anyone see the logic in this? I still have technicians doing that with me. They block my ears and lock my head in so I can’t turn and can barely interact and then they ask if I’m OK. WHAT????? Did you say something? My instinct is to move my head. And then panic, oh wait I can’t. GEEZUM! Someone’s gotta tell them that makes no sense. Perhaps walking us through some hand signs would be helpful or something. Eye contact with me directly over where my head is locked in would be good too.

The next thing I know the table starts moving and I’m sent into the dark tube. The tube I could barely fit in. And they kept sending me into the darkness. Oh thank goodness the MRI machines I go in now are white and have a lot of light. I kept trying to remember what my Rheumatologist had told me. Look straight up and you’ll see a mirror that reflects the window to the room where the technicians are. Look at them if you need to. She reminded me that I’m not stuck in there. I could slide out if I wanted to. However all I could picture was panicking and trying to sit up and knocking myself out because I’d hit my head on the head cage or the tube or both. She told me I could wiggle my fingers if I crossed them on my stomach (really not too comfortable for all that time) and I could see them in the mirror so I’d be aware that I hadn’t detached from my body somehow. However, I was still sooooo scared to move. I didn’t want to have to do this over again. I just wanted it done with.

Meanwhile I’m aware that Corey and Lori are in the Waiting Room. I think it was in that dark long squished tube where I got a glimpse of how vulnerable I really was. I was locked in. I was taken away from my people. Yes I had watched too many movies, TV shows and read too many books but I’m not convinced “weird” stuff doesn’t happen. How do I know? I started thinking about how they were looking at my brain. I started thinking about how I had a brain. Hey, I really had a brain! What were Corey and Lori doing? Wow, this machine is really loud even with my ears blocked. Oh my goodness I have an itch on my nose. How much can I wiggle my fingers? Can I move my feet at all? Doesn’t any movement of my body move the rest of it? As I looked in the mirror into the other room, I wondered, how I had not seen that room when I came in? Where was it? What were they seeing? Why were there so many people in the room? Dang it! Breathe! Oh my goodness I’m in a dark long tube! How long has it been? Why aren’t they talking to me? Can they please not talk to me? Can they please not tell me how much longer? Wait why is it so silent? What do the sounds mean? What does my brain look like? Oh my goodness this tube is long. I hope there’s not a monster just waiting to grab my head in the part of the tube I didn’t enter. Why am I so far in? Didn’t Dr. S say I wouldn’t be pulled all the way in? Uh oh. Why the silence? That’s a long silence. I can do this.  Really I can. Uh huh. I got this. Soon enough it’ll be over and I’ll be on my way and Lori and I can have our visit. Why is it taking so long? Or has it been long? I’m feeling cramped. I’m so hungry! UM DID THEY FORGET ME? Why does this machine vibrate too? No one told me about that part? WHAT IF THERE IS SOMETHING REALLY WRONG WITH ME? WHAT IF I HAVE MS? The mind loop was endless and I worked so hard not to get worked up that I was so stuck in my head. Did I have a body anymore?

So then I feel the table start sliding me out. I must be done. OK. I can do this. Phew! I’m done! Wait, that long haired lady is back and she has a serious look on her face. Does she have a serious look on her face? What is she doing? Shouldn’t she be pulling me out? I’ll ask her. Where’s my voice? Why can’t I say anything? Did I forget how to talk? Can I move? AM I DONE? What is she doing with that needle? WHAT’S HAPPENING?! No. No more needles. I’ve had enough needles and blood taken from me in the past 6 months. (Little did I know it was only the BEGINNING…).

I really don’t know if she told me she was putting “Contrast/Dye” into my veins. I just remember thinking that I felt like a specimen and some kind of experiment. I must be a part of a horror movie right now. Wait! I don’t remember being told I’d have this done. Why is it happening? She asked me what arm was best for veins and I told her I wasn’t sure. So she just tried. (I now know it’s my left arm just on the outside. Otherwise, my veins hide and don’t like being bothered. They’re busy.) OW! WHAT THE HELL WAS THAT?! The shooting pain was abominable. I was strapped down. I think I jerked and she tried to hold me down and apologized and said she had missed it and would have to try again. I asked her what she was doing anyway I think finally and she said she thinks they might have seen something (ummmm not a good idea to tell me this and aren’t they supposed to keep their mouths shut?) and so they are putting ink in my veins to find out.

FREAK OUT BUT STAY STILL!

STAY STILL?! STAY STILL?!

OH MY GOD! WHAT’S WRONG WITH ME?! SOMETHING WRONG? WHAT DO I DO? I can’t have something wrong with me. My sister’s here. I’m supposed to be tough for her. I’m not supposed to show any weakness. And then she moved to the other arm. Yes, I’m still locked in. I have a ridiculous force of will to stay in one place because honestly my head had me sprinting out of there so fast and yelling and screaming down the hallways. GET ME OUT OF THERE!

And something in my head told me to try to calm down. Let’s just get this over with. It may be nothing. They had told me that before during this journey of finding out what’s wrong with me. They thought they saw something and I’d freak and worry and lose my mind and then I’d found out it was nothing or that oh so fun medical word, “inconclusive”. Oh the things I could do with that word…

So she tries my other arm and she just couldn’t get the vein. She didn’t just stab me this time but squeezed my arm so tight and had me clenching fists and FINALLY I think she got it. Meanwhile, the other arm was still screaming. She had gotten the ink in my muscle. Who knows what that did to me. I still wonder. Before she sent my head into that dark tube she asked me if I had anyone there with me  in the Waiting Room and I told her yes and who they were. She said she’d tell them it was taking longer than expected.

So she says, OK, this shouldn’t take too much longer and she sent me back into that dark tube abyss…to be in my own head…to freak out…to be so horrified and think I was living in a nightmare…Did anyone really tell Corey and Lori why it was taking so long? What did they say? Did they know more than me? A part of me knew, I KNEW, that something was really wrong with me. What it was was terrifying me. The possibilities were endless. Would I find out right away? Would I have to wait forever to find out? What now? This should be done with me! I want out! Get me out of here! I was clearly wound up with so much stress I could barely stand it. I don’t know how I did actually. I guess a survival instinct took over. I was so worried about what Corey and Lori were thinking and that this shouldn’t have had to happen while she was here and now what and my head just kept exploding with crazy thoughts.

FINALLY…

THE MRI MACHINE STOPPED…

AND I WAITED FOR-WHAT SEEMED LIKE-EVER FOR SOMEONE TO PULL ME OUT OF THAT TUBE.

I had tensed up so much I could hardly move. I was so in my head I could barely function. This time the person taking me out was a blonde older woman with curly hair and glasses and she looked directly over me where my head was and I’ll never forget her eyes and the way they looked at me and kept staring at me as she unhooked my head and loosened it all up around me.

SHE LOOKED AT ME AS IF I WAS GOING TO DIE.

DIE.

I still have those eyes of her’s so stuck in my memory that I don’t think they’ll ever come out. So as I’m still laying there and I now have my ears clear, she asks me all kinds of questions. How am I feeling? What are my symptoms? When did they start? Do I have anyone here with me now? And I can hardly talk. I try to sit up really quick and I almost fall off the table I’m so dizzy and out of it. I’m so traumatized. I’m 25. I’m invincible remember?

I also was incredibly tense with MS and didn’t know and probably lupus and didn’t know that for so many more years after that that it’s a wonder I didn’t have a major attack/exacerbation/flare right there on the table or in that room. She kept those “You are going to DIE eyes on me the whole time.” I felt violated and so alone. I just wanted to get out of there. And in that same tone with those eyes, she said, “Now I need you to call your doctor right away in the morning. It’s too late now because you’ve been in here so long.”–Oh it wasn’t just me thinking it was long? It REALLY was that long? Poor Corey and Lori! I was so used to trying to please everyone and entertain everyone that I couldn’t be anything but that strong person. How was I going to show myself? I didn’t even know what they had said to them. They must be so worried.

So I tried to sit up and that wasn’t happening very well. I almost fell off the table. I had “freaked out dark tunnel scared to death” head. Horrifying. Why didn’t I wake up yet? Worst nightmare ever. Especially those “death” eyes of her’s. She caught me as I teetered to the side and held me upright and still looked at me as if I was going to DIE right there on her. I wish I could be exaggerating here about how she was looking at me but to this day with everything else I’ve been through, I have yet to see “THOSE DEATH EYES” on anyone else. So she told me to just sit there for a bit and she’d go out into the Waiting Room and tell Corey and Lori I was done and coming out soon. She came back in and asked me if I was OK getting up.

YES! GET ME OUT OF HERE NOW!

And I jumped up. Ooops. I stumbled and almost fell. Get me away from this woman please! She’s scaring me! Where was my voice? Did I even know how to talk? I had hidden me away somewhere deep into my brain. I was protecting me. I think I was a shell at that point. So upon seeing that I’m stumbling and clearly my legs are jello she tells me I’m going to have to ride in a wheelchair out into the Waiting Room and she’d be back.

WHAT?! A WHEELCHAIR?! I’M STRONG! I CAN WALK! I’M OK! I HAVE TO SHOW EVERYONE I’M OK! I CAN’T BE WEAK! PLEASE! NO!

I think I mumbled to please not do that but if she heard me she ignored me. All the while those “death” eyes on me as much as possible. I’m surprised she left me alone at all.

So she helped me a little too much into the wheelchair. By that time I had more of my bearings and was entering my body a little bit more from my hiding place in my head and I gave her a look like, “I GOT IT!” and forced myself into that chair. And then horrified, I was wheeled into the very bright Waiting Room where I saw Corey and Lori. As she’s rolling me she’s on a constant loop of telling me to call my doctor and not to ignore it and it was very important and when I finally found a voice to ask her what was wrong she told me she couldn’t tell me but that it was so very important and oh my goodness.

I was mortified that Corey and Lori would see me in a wheelchair because I mean really, I had only had an MRI. I was fine. I could walk. What the heck? I couldn’t look weak. I got this. Really. So still struggling to find my words, I try to get up out of the wheelchair ASAP and that blonde woman was STILL THERE! GO AWAY! LEAVE ME ALONE! DON’T TALK TO THEM! I HEARD YOU! I’M RIGHT HERE!

“Please make sure you talk to her doctor tomorrow OK. It’s so very important. You really need to do that. You can’t waste any time.”–as if I’m not there and I’m not understanding what she means and she gave them those same “death” eyes.

HERE’S MY QUESTION  TO HER OVER 10 YEARS LATER:

WHY DID SHE NOT MAKE SURE SOMEONE CALLED MY DOCTOR THAT NIGHT NO MATTER WHAT IF IT WAS SUCH AN EMERGENCY TO HER?! WHAT AM I MISSING?!

So she walks away and Corey and Lori are looking at me like I need to be treated with gentle hands. That’s what I felt like. Now I know they were looking at me like they were concerned and worried and they were allowed to be. They got those same EYES from that woman that I did about me. Scary! So as I start bawling and Corey’s telling me it’s OK and I can stay in the wheelchair as long as I need to and ALL I WANT TO DO IS GET THE HELL OUT OF THAT WHEELCHAIR! I CAN WALK! I CAN GET UP ON MY OWN! LET ME!

I still had a bit of a hard time talking especially with the crying and finally he understood that I wanted to get OUT OF THAT FRIGGIN’ WHEELCHAIR and into a regular chair and I wanted to throw that wheelchair as far away from me as possible. Somehow FINALLY I found my way into a regular chair and I bawled and bawled. I think I left a piece of me in that MRI room. I lost a lot of innocence that day. I found out I was mortal. I found out I wasn’t invincible.

I was human.

HUMAN.

We sat in that Waiting Room for a long time while I regathered myself a little bit more. When I look back on that night I think about how Lori was there and Corey was there. I wasn’t alone. That was no mistake. That was why I had scheduled the MRI for that night. I needed my Sister. Corey needed my Sister too I think. My Sister and I were still struggling with our relationship then and I had to be me with her the next few days. ME. And that was OK.

And one side note: I’m not surprised I couldn’t stand that wheelchair. It turns out I get very dizzy in them or I used to even up to a year and a half ago. I don’t know about now and I’m very fortunate not to know. I’m so grateful I can still walk. It’s weird. I’m OK with others in wheelchairs (well as OK as I can be considering these people are having a hard time in some way) but I felt like I couldn’t be in one. However, I now know that it’s hospital protocol. The last thing they want is me falling on their watch because uh oh I might sue. Oh poor things…

That’s it for now. I’m glad I got it out. As you can tell, I didn’t DIE. I haven’t DIED  yet. I don’t plan on dying anytime soon. I’m too busy living.

And what happened after that?

ALL HELL BROKE LOOSE! So much so that I need to recover from this post in order to write another one. I hope it doesn’t take me over a year because I think it’s ready to come out and I can tell already that I’m more healed from finally writing this.

Therapists have now told me that I am still suffering a bit from PTSD or Post Traumatic Stress Disorder from just that one experience and that there are separate episodes to work through too all connected with this one. I believe it. I wish there had been enough sensitivity at the time to really see what I was going through. I feel it in my heart that we all need to see Therapists at some point in our lives but when going through such trauma as medical tests and the limbo part before diagnosis and then the diagnosis of the Chronic Illness along with maintenance care throughout–we should be REQUIRED to see a Therapist. To not talk about it is poison and can only make our health worse.

Medical Journey Trauma (I think I just came up with a new term) is REAL. And we all deserve to talk about it, process it and move on with our lives.

Oh and how do I feel about MRIs these days????

THEY STILL SUCK!

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The Path of Least Resistance

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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I Am Saying What I Need To Say

Last week I almost DROPPED my Blog altogether due to legal advice given to me.  It appears that social media is hindering those of us with Disabilities.  Apparently if those of us with Disabilities (as if we asked for them) use the internet and “look capable” than we must be able to ….FILL IN THE BLANK HERE… Needless to say I was NOT a happy person.  This Blog has become a Community for me.  Not only have I been able to Say What I Need to Say BUT I am opening up a place for others to join me.

THIS IS NOT JUST MY BLOG.  THIS IS OUR BLOG.

To be honest, I am not ready to write about last week’s awfully traumatic experience (for me) just yet.  I am worn out from wrestling with myself about the entire subject.  The best part is:

I WILL CONTINUE TO SAY WHAT I NEED TO SAY AND I WILL NOT HIDE.

I have found that music is incredibly healing and I feel a need to Share another song that has meant a lot to me on my journey with chronic illness over the years.  Thank you John Mayer for this song.  I heard your words loud and clear and I continue to HEAR them.

Here’s John Mayer’s song, “Say What You Need To Say”.  Also as an added bonus it looks like this song/video was made for a movie in 2007 called “The Bucket List” with Morgan Freeman and Jack Nicholson.  I hope you enjoy the song as much as I do.  It is definitely one of my theme songs.

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Music Friday!

I have been so reflective lately and I think this song fits my mood.

The song and video are by a group named Elbow.  Yes, Elbow is their name.  They have been around for years and I JUST discovered them last year when I was watching the Itunes Music Festival on my IPad.  I love music and I’m always looking for new artists.  I watched this top notch group and concert and absolutely fell in love with these guys.  They not only know how to throw a classy show, but they are funny, friendly and talented.

Their song, “Build a Rocket Boys” is definitely my favorite from them and I can’t stop singing it since I heard it the first time I saw them at that Itunes Music Festival months ago.  Every time I hear it I am brought back to the good times (and even maybe not so good times) of the past and you know, they have NOTHING to do with rockets…and that doesn’t matter.  The song is so personal, thought provoking and so emotional and I can really feel it.

So here you go.  I hope you like it as much as I do.

Does it bring you back to any time in your life?  If so, when?  I’d love to hear your stories.

Before I go, I’d like to take some time to welcome my New Followers!  THANK YOU!  To have you join me on my journey is an honor.  To have all of you with me means so much to me.  Feel free to spread the word about my Blog any time.  The more the merrier.  I’d love it too if you want to comment on any post please do and you can also find my email address on my “About Me” page.

Take care and have a wonderful weekend!

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Happy 1 Year Anniversary Purple Hair!

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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WALKING AND WALKING AND WALKING

That’s me. I’m a walker.

I feel blessed to have two functioning legs that let me walk and will hopefully continue to do so.

AND thanks to Physical Therapy, a past of walking as a hobby, my journey of self care and my stubbornness:

I HAVE WALKED EVERY DAY FOR 125 DAYS!

Crazy. Can’t even believe it! I couldn’t have done it in the past. I definitely can’t plan to walk anymore days than this because when I PLAN it’s suddenly too hard and overwhelming. I would put sooooo much pressure on myself to do it and it wouldn’t happen. I also can’t tell myself how long I have to walk OR that I can only walk outside.

The trick is to take it one step at a time, one day at a time. I have walked EVEN when it’s been hot, sunny, I’ve been sick with infections, I’ve felt crappy–you name it. I still walk. I have to be creative too. I have a walking video I use inside my home. I have a walk that I do around the apartment (boy does that get old but it gets the job done). I have a walking/dancing meditation I do especially when I need to get frustration and extra pent up energy out. When I’m out at doctor appointments, I’ll make sure to take a walk around that area and around a block or two; or to a lunch spot. And of course I still take walks outside anyway. But I gotta change it up.

I WALK.

And my legs thank me for it. My body feels stronger. I’m able to stand in one place for longer periods of time. I’m able to get out a bit more and live my life. Those far away parking spaces don’t seem as far away anymore. The walk through the grocery store isn’t so tiring.

By taking off the pressure I am able to keep going. It’s not always so easy to take off the pressure and have expectations. I find I do EXPECT to walk every day and there have been a few days I’ve heavily considered taking a break and I get upset that I might miss a day. BUT then I find myself walking.

How many more days in a row can I keep on walking?

I’ll letcha know. For now I’m thrilled that I’ve made it over 4 months–

WALKING AND WALKING AND WALKING…

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It’s An ’80s Kind of Day Part 12

OMG!  It has been over a week since my last Blog post.  I guess I needed that break.  And I’m jumpin’ back in with the ’80s because I need more fun in my life!

 

1. Heart of Rock n’ Roll  By: Huey Lewis and the News

He is one of my all time favorites!  I currently play his CD quite a bit.  He helps get me going to face my day.  He was one of my favorites as a kid and I learned all the words to his albums right away.  They’re fun and quirky!  And you gotta admit he’s a bit goofy.  For the longest time when I was little I didn’t realize the first drum beats are supposed to be heartbeats, hence the first name of the song being “Heart”.  Duh.  Hey, I was a kid.  Give me a break.  He and his guys were so funny.  Looks like they had lots of fun together.  And there were so many words in this song and locations that I always was messing them up.  Not even sure I know them all these days.  Cool!  The clubbers have the rockingest hair!  Too silly to see them all looking stunned and out of place.  I don’t think I’ve ever seen this video before.  So does he think his music connects with the first rock and roll music like Elvis?  HMMM….  Not so sure about that.  OK they all have the same hair and it’s funny.  What the heck?  Old audience footage of crazy screaming girls.  Hmm.  Still not seeing the connection in regards to Huey and his group.  Just sayin’.  Love the hokey orangey/red blinking light inside his jacket.  Ha!  Scary eyes!

 

2. I Wanna Dance With Somebody  By: Whitney Houston

Such a sad story and may she rest in peace.  However, she sure did show some joy at least in the beginning of her career.  Her energy oozed out of her music and made me want to dance with somebody too.  I really liked her as a kid.  I had her first album and she looked so pretty on the cover.  Such a beautiful voice.  And this song sure does make me wanna dance with somebody too.  Got any ideas of who?  Hello shoulder pads!  Hello tons of makeup!  So could SHE dance?  Not seeing her do much of that in this video.  What’s with all the different guys dancing?  Is she auditioning them to see who she wants to dance with??  You know she’s not the best lip syncer in this video to her own song.  Kinda funny to watch.  Help!  There are dressing room legs dancing!  I remember I was so confused about how her hair kept changing.  How could that happen?  OK.  Excuse me while I start dancing with somebody.  Starting to bebop in my chair as I type this.

 

3. Separate Ways  By: Journey

YES!  Love this song.  So powerful.  I remember I thought it was so deep (still kinda do, ssshhhh, be nice).  LOVED Journey when I was younger.  So perfect for a confusing time as a teenager.  ROCK IT!  Such a great song to belt out.  You gotta try it sometime.  Look at those white heels walk fast.  “Two, two, two”–so two?  Such a weird camera angle.  Why are we looking up at them?  Anyone else with me here?  So we’re supposed to think they’re better than us?  Hmm.  Not such a great style idea in my opinion.  I’m sure they thought they were cool but still.  Doesn’t work out right.  And oh his hair.  Do you think he really means all this?  Should someone give him a hug?  The guys singing behind him are cracking me up.  The one on the right keeps singing off.  Too funny.  Such a big voice for such a little guy.  He sure does like to sing words three times in a row a lot.  And what is with the setting?  Who designed this??  Whoa.  She has big hair!  Can we say Aquanet?!

 

4. Bette Davis Eyes  By: Kim Carnes

So what else did she sing?  Good question.  BEST RASPY SINGING VOICE EVER!  My memory of this song as a kid was “Who the heck is Bette Davis and why do I care?”.  I chuckle to think about it.  Hooray for Bette Davis!  How many fans do you think it took to blow those curtains in that blank room?  She’s wearing sunglasses.  Ha!  Oh and look at that shadow on the wall.  Clever.  But so boring with the black, white and grey and yet I’m sure it’s obviously connecting us to the black and white movies right?  Didn’t we all go there right away?  Still boring if you ask me.  Horrible reflections of lights in her dark sunglasses.  Ooops.  Oh there are her eyes.  Is it me or does she look AWKWARD and uncomfortable?  Fling that blonde hair around!  Weird reenactments.  Can’t help it.  She makes me want to clear my throat.  What on earth is the drummer wearing?  Such a loooong song.  Goodness.

 

5. Still Standing  By: Elton John

OK.  I think we can all agree that this is so not his best song.  However, you have to admit it’s VERY catchy and you can’t help but sing it a little bit.  And I like to sing it and belt it out because hey, I’m still standing and it’s nice to note considering I have MS and lupus and it can be quite hard to stand.  So there’s a current personal connection to this that I wanted to share.  And of course he’s driving down the road in his flashy attire and there are groups of people dancing.  Isn’t that what we all see all the time?  It would be kinda cool if we did don’tcha think?  Now that’s a lot of body paint.  Cool human domino effect!  Well done!  Hey, that looks like Santa Monica!  I want to have a piano on the sand by the ocean!  Sure are lots of antics in this video.  Ha!  Love all the different sunglasses at the end!

 

Well that was tons of fun!  Any ’80s memories you’d like to share?  Would love to hear from ya!

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