Birth Date: 5/28/77. Thanks! Yes I just turned 36. Uh huh. I’m aware of what 36 means. Wait, what does it mean? Do I dare ask?

Male/Female: I’ll let you guess.

Phone Number: Oh great now you’re gonna bug me all the time.

Any Other Good Numbers to Call?: Nope. And even if there were some I wouldn’t give them to you because you’d chase after me and I’d get no peace. And no you are NOT getting my work number. I made the mistake of telling you that number before and you kept calling me there. Um hi. I’m busy there.

Address: Great. You might stalk me. You’ll at least be sending me bills here. Why else would you want it? Why do I want to give this to you?

Is This a Good Billing Address?: Knew it. It’s all about the $.

Emergency Contact Phone Number: ACK! What’s gonna happen here? There’s gonna be an Emergency here? What if I have no one? And if I give you someone, will you call them every time you can’t reach me? What if that person is across the country? How will they know where I am? Great, now they’ll be worried.

Weight: Does that really matter? Is this any indication of anything? There is no black and white here.

Height: 5′Short–according to my Chiropractor I should be 5’5″ someday as long as I keep going to get adjustments/treatments from him.

Usual Blood Pressure Reading: As if I’m gonna tell you if it’s high. Uh huh. But you’ll take it here in the midst of White Coat Land and freak me out EVERY TIME and take that as a regular reading. Oh you want me to check it at home to get a more accurate reading? How will that be accurate again? I’ll know when I’m gonna be doing it and it will go up.

Usual Body Temperature: 97.5 but you won’t believe me so when you check my temperature and see that it’s 98.6 you’ll say that’s normal and I’ll say it’s high for me and you’ll pass it off.

Hair Color: Well now that’s a good question. Some kind of purple since March 2012.

Hair Type: Pretty dang curly. It’s really short right now.

Eye Color: Blue and to me my eyes are tiny. I also wear glasses so it’s hard to tell they’re as blue as they are.

Birthplace: Homestead, FL (Does that really matter?)

Where I’m From: Kingston, NH

Where I Live Now: Los Angeles, CA

Grow Up With Both Parents?: Yes. I’m blessed to have done so. However, growing up with Single Parents wouldn’t make me less than.

How Old Are They?: None of your business.

Siblings?: Yes. An older sister.

How Old is Your Sibling?: Isn’t that Private? I already said she was older.

Employed?: No. What’s your point? Thanks for reminding me.

Insurance?: Yes. What if I said no?

Are you the Insured? The Primary Card Holder?: HUH?

Primary Insurance?: Ummm…

Secondary Insurance?: WHAT THE?! Leave me alone!

Insurance Information (and everything you didn’t even know you needed to know…): OK. Let me just dig through my purse and wallet and FIND that all for you. Didn’t I just give you my Insurance card? Isn’t it all on there?

Driver License Number: Geez. Nosy! And didn’t I just give you my ID? Isn’t that what this is?

Social Security Number: None of your business. Stop snooping around. I think I need to report you.

Disability?: Meaning what? Yes I have Disability Coverage but don’t get me started about all of that. Am I Disabled? YES! OK?! I think that’s in the mind of the beholder.

Married? Single? Divorced? Domestic Partner?: What does that matter?

If Yes to Married, what’s your Spouse’s Name?: What if I’m not married? I feel like crap now.

If Yes to Married, Spouse’s Social Security Number: Well now that everyone else has been left out…now why on EARTH would you EVER need their Social Security Number?

Allergic to Anything?: What exactly do you mean by allergic? I hope not! Great now you have me paranoid.

Eyesight: Yes I have it but I’m pretty blind. Do you mean do I wear glasses? Yes.

Illnesses?: Must you remind me? (Sigh.)–Multiple Sclerosis, Lupus, High Blood Pressure, Asthmatic Tendencies, Hay Fever, IBS, Prone to Infection, Probably Depression–and now I’ve crawled under the chair in the corner…

Is This a Work Related Accident?: I knew it was an accident I had all these illnesses! Yes! I’ve wanted to blame my work for something! Perfect!

When Did It Happen?: Ummmm…which dates are you looking for? What are we talking about now?

Medications: Hmmmmm. Do you have a whole book I can fill out? This little box here ain’t gonna cut it. And do I include vitamins in this or not? None of you ever know if you care about these or not.

Other Doctors?: Too many to count. Again, looking for a book to fill out. I might have room to write down one doctor.

Can We Contact Your Doctors?: Meaning what? Yes aaannndddd No. How’s that? And will you really contact them?

Any New Doctors?: Chiropractor (not that you pay attention to that because they are NOT in Western Medicine…OH but he’s a doctor too? OK…). Psychologist/Psychiatrist: Yes she’s both.

Symptoms?: Ok great. Thanks for reminding me. Yep. (Tense up).–Fatigue, pain, stiffness, weakness, tingling, heat fatigue, eye light/dark sensitivity (new–and I’m annoyed), dry eyes, dry mouth, cognitive symptoms, emotional symptoms, overall malaise, hair loss, nausea, bloating (hmmm there’s not enough room on here. In fact, there’s not enough room in any of these boxes on here. What the heck? Do you really have any patients who can fit their life/health histories in such a small space?)

WHAT KIND OF A FORM IS THIS?

*THESE ARE JUST EXAMPLES OF WHAT I’VE BEEN ASKED OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AGAIN!*

Seriously, doctors, nurse practitioners, physician assistants, medical assistants, nurses, office staff, lab technicians, etc.: How often do you really look at these? Are you even looking at these? And do I even want ALL OF YOU to see EVERYTHING I just answered? That is a flat out NO! And why isn’t there an overall database that all medical professionals have access to? Why do I have to KEEP filling out all the same questions? Why is each form different? Why can’t they be uniform? I’m tired. I’m tired of writing all of this down. I’m soooooo over rehashing all of this.

I AM NAHLEEN.

What does that mean? That means I’m a Person. I mean something. I’m not my penmanship (which used to be really good btw until I kept having to write these answers over and over again). I’m not just my name. I am 3D. I have Depth. I giggle a lot. I’m struggling all the time with my diseases. I’m not working and that was one of the hardest decisions to make. I’m afraid to say I’m feeling better because I don’t want you to think that I’m all better and shut off when I tell you that. And who knows who will be looking at these files/records and will assume I’m magically all better and then what? I don’t fit in a box. I don’t come in black and white. I come in many colors. Perhaps that’s why I express the purple that’s within me. Yes, my hair is purple. That doesn’t mean I’m happy. That also doesn’t mean I’m crying out for attention. Purple is a part of who I am. Purple has been a part of my soul since I was at least 10. That’s a long time. Can we get passed my purple hair? Thanks. Yes, I have a husband. We’ve been together 15 years. Married 6. Why does the part where I’m married mean more than the commitment of the relationship of 15 years? Yes, I have a weight problem. I’d think I myself would be the most aware of this at all times since I have to live with me. I have ALL MY LIFE. Sure I don’t get to exercise as much but how much do I need to do necessarily? I’ve been walking every day now for 401 days! I know it’s cool. You better think it’s cool! I stretch every day too. Cardio? I try. Coming here to all of my doctor appointment should count as cardio. I’m serious. Oh and did you ever ask me how I am? How I’m feeling? How I’m really doing with all these illnesses? You want me to come in next week too? Did you ask if I’d feel up to it? Did you take into account my life? You are not the only doctor in my life. You are not the only part of my life. You want me to try a new medication? Oh it only has THAT many side effects? Will you be able to pay for it? I’m currently low on funds. Did I mention to you that I’m going on a trip soon? That I want to do more than go to doctors? That I want to have a fulfilling life not focused constantly on medical crap? That I want to try to live my life not ALWAYS talking about my illnesses? Not being defined by these life disrupters? Did you know I have a Cleo Kitty? That I love to write. That I have a Honda Fit that I love? That I miss my family and loved ones back east like crazy? That I’d love to be a Producer of TV, feature films, short films, videos of any sort and to be that creative and not worry about how much time that would entail and how much that would wear me out? That because I’m always seeing you I get really tired and don’t have a lot of time to be social? That I love to be social? I almost forget this myself because I’m so caught up in stuff with you. Don’t get me wrong. Thank you for helping me or trying to. Thank you for helping me feel better (well at least a lot of you–I won’t talk about the others). Thank you for being proactive and part of my time.

BUT PLEASE TAKE ME INTO CONSIDERATION.

I am a person. I have a life. You take up a lot of me. I don’t see you for fun. I see you to get healthy. Perhaps we need to take a look at the best way to keep me healthy. Is it by seeing you all the time? Filling out these forms? Getting my arm constantly squeezed by the blood pressure cuff only for it to spike when I’m there? Is it by constantly talking about my weight? Is it by constantly stabbing my arm to check my blood work levels over and over again because you haven’t been in communication with my other doctors about my blood count levels that were taken just last week? OR is it by spacing out these appointments a bit more? By letting me expand and grow my life to see what I can do and not do? By taking the time to see that I am a human being who needs to breathe and to LIVE and experience the world as this newer more enhanced version of Nahleen???

I’m not the same Nahleen who was working 3 years ago and pushing to do my best no matter what cost it put on my body and my life because I didn’t know or understand anything different. I am a Nahleen who is feeling out my boundaries. Who is not willing to be horribly sick again if I can help it. Sure my body might have its own plans but I will not push it too far. But see I don’t have much chance to see how far I can push. If am pushing, it’s to see my therapist and chiropractor while I’m seeing my other doctors. And these 2 new medical professionals in my life are helping me to figure out how to be a Nahleen with purple hair who still has a chance to smell the roses and look up at the sky (3 of her favorite things were just mentioned here), wants to figure out where her place now is in the world, wants to be social and not live within a medical professional tunnel of health, wants to try new things, wants to do more than rehash her health stuff over and over and who needs to BREATHE!

So if I tell you I can’t see you next week and there is room to BREATHE without putting my entire health at stake (I understand sometimes there are exceptions), please give me that room. You have your life schedule. I have mine. Please respect that. And if I don’t have time to see you, please COMPROMISE. With all due respect, it’s not all about you. You are not my only doctor. You are not the only thing going on in my life. Let’s talk about this. And PLEASE, don’t give me less care because I didn’t put my life aside to come in and see you and pay you more money. There is a phone. There is email. There is always another way.

THANK YOU.

8 years later I can tell you that I believe she was also sent to help me FINALLY be diagnosed with Lupus. That was in June 2010.

8 YEARS LATER.

They still didn’t know enough about Lupus even 11 years ago for her to diagnose me. I can remember her apologizing profusely that she wouldn’t be able to give me any answers about my very uncomfortable symptoms that were in her Specialty–such as me having Lupus and me thinking at the time that that was quite alright. I was 26 years old at the time. I didn’t really need to hear about having Lupus. Really. MS was enough.

I didn’t really need to hear about having MS either but I did. That December of 2002 I was diagnosed with MS because I had FINALLY had an MRI and there were lesions on my brain to show that I had MS. There’s a lot more to this story but these days looking back on the traumatic Hell I went through back then, I’m pretty darn sure I had both MS and lupus and that they were flaring up at the same time but MS was the disease that had physical evidence to show people. You could SEE it. There was SOMETHING to prove. MS is also a VERY confusing disease to diagnose BUT at least there are lesions on the brain.

Lupus doesn’t have that. Lupus is even more invisible. It’s the Great Imitator. It’s the Great Mimmicker. There’s pain, there’s fatigue, there’s a brain fog and they all show up in MS–and now I’m learning they are different BUT wow they overlap like crazy. Lupus also affects organs. It affects the body tissue. It affects the mouth and can make it crazy dry along with eyes. It can cause rashes. It is very sensitive in the sun. HOWEVER, it seems like if the body doesn’t CRASH in some way than it’s hard to figure out. All of my symptoms were blamed on the MS. Even more interesting is that I think I’ve had something like Lupus since I was a kid. Imagine treating that as a kid. Yeah I wouldn’t have liked it but it would’ve explained A LOT and I have a feeling I’d be feeling lots better right now.

For me the signs that “something else” was going on in 2010 were that my thyroid acted up, then my eyes got really weird, THEN my liver nearly failed on me and the levels were toxic. That caused me to basically vomit up my ENTIRE BODY. That is the only way to explain it. I don’t vomit. This may be TMI for you but it’s the truth and I’m here to tell you the truth. I don’t vomit. I get extremely nauseous. Vomiting is strange for me. Sooooo, that really should’ve been the big indicator something was off. But no, I thought it was an awful stomach bug. How did I know the difference? Looking back, I was so out of it there’s NO WAY I would’ve known left from right at that point.

So what happened?

MY BODY HIT A WALL and my liver was nearly in failure. Thank goodness I’m so sensitive and my body gave me enough warnings. Thank goodness I listened. Thank goodness I am pushy and stubborn.

In June of 2010 I was severely ill and doing that “vomiting” I talked about earlier. It took 2 MORE MONTHS to be diagnosed with Lupus.

2 MORE MONTHS.

I WAS DIAGNOSED WITH LUPUS IN AUGUST 2010.

THAT IS TOO LONG. What if something else had gone wrong? What if I wasn’t being seen by any medical doctors at the time and tried to tough it out? What if my body shut down on me? These are the kinds of things that run through my brain. I can’t help it.

The most prominent question is this:

WHAT IF THAT ANGEL OF A RHEUMATOLOGIST IN 2002 HAD NOT DRILLED IT SO MUCH INTO MY BRAIN THAT ONE DAY I COULD HAVE LUPUS?! THAT ONE DAY THINGS MIGHT GET AWFUL AND I MIGHT BE FEELING SO TERRIBLE AND NO ONE, AND I MEAN NO ONE, COULD DIAGNOSE ME WITH ANYTHING TO HELP ME FEEL BETTER? WHAT IF I HAD CONTINUED ALONG THINKING I ONLY HAD MS? WHAT IF I HAD NOT SENT MYSELF TO A RHEUMATOLOGIST BECAUSE I WAS AT THE END OF MY ROPE?!

IT SHOULDN’T BE THIS WAY. LUPUS IS A VERY SERIOUS AND DISRUPTIVE DISEASE AND I’M STILL RECOVERING. It was a very special Doctor who helped me 11 years ago when I needed it the most. Without her I wouldn’t have EVEN THOUGHT to bring up Lupus. It’s not a black and white disease. It is all in the greys. And let me tell you, it gets REALLY COMPLICATED when Multiple Sclerosis comes into play.

REALLY COMPLICATED.

And this is why I spread awareness and tell my truth about what I have been through. This is why I believe so much in spreading the word about what I’ve gone through and am so grateful that there are organizations who have established Days like World Lupus Awareness Day. PLEASE. If you aren’t feeling well and you don’t know what’s wrong, keep asking. You know your body. You deserve answers and there is going to be someone out there who can help you. They may not have all the answers or tell you what you want to hear (boy is that the TRUTH) but they can help lead you in the right direction.

AND ONE LAST THING: THANK YOU TO THAT SPECIAL DOCTOR WHO WALKED ME THROUGH THE HARDEST TIME OF MY LIFE 11 YEARS AGO. I AM FOREVER GRATEFUL FOR YOU. YOU GOT ME ANSWERS ABOUT MS AND YOU GOT ME ANSWERS ABOUT LUPUS EVEN THOUGH I HAVEN’T SEEN YOU FOR 11 YEARS.

So please if you are so inclined, spread the word about Lupus. Spread the word about all of these crazy autoimmune diseases. They are all so similar and there is so much more to learn. And please, take care of yourself and listen to your body. You deserve it.

If you have any questions or comments let me know. Let’s talk about this. Let’s spread awareness. No more hiding. The more we know the better off we’ll all be.

I haven’t posted much lately because I’m really working on me.  And what’s been happening is that my body and mind are trying to keep up.  They are trying to keep up with the past and the present while keeping an eye on the future without trying to FIGURE IT OUT.  That’s a lot of hard work.  A lot of introspection.  A lot of NOT CARRYING it all anymore.  A lot of Change.  AND–a lot of rest.  A lot of quiet time.  A lot of landing as I float and spin around in all of this.  I feel as if I’m in a snowglobe where it’s all so pretty and all the snow is spinning and swirling around so beautifully and at some point I know it will settle.  I feel it inside.  I have the faith.

For the first time ever I feel the most UNSAFE bringing it all up to come out–you know, that emotional crapola we all stuff in way too deep and it is very poisonous.  I feel raw, vulnerable, exposed and oh so strange…Yet at the same time, I feel the most SAFE I’ve ever felt too.  I know I’m in good hands.  I feel the most supported, the most loved, the most taken care of I ever have in my almost 36 years.  And I’m not going to think too hard about that number of 36 because it is ONLY a number.  And how cool.  I am headed to another year by the end of this month of May.  Some people don’t get that chance.

What has been the most potent in my Healing has been all of the LOVE surrounding me and all of the LOVE I’m able to give.  LOVE is truly powerful.  I used to feel like talking all about LOVE was hokey, or that I’d be judged for being some light fairy silly chick with flowers in my hair.  Well, first of all, I now want more flowers in my hair.  There is nothing wrong with LOVING LOVE.  The world needs more of it.  We all need more of it.  We also need to give it.  Heck LOVE even needs LOVE.

And what I am finding is that I LOVE LOVE.  Without LOVE I don’t believe I’d survive right now.  There is TOO MUCH.  Life can be TOO MUCH.  But with LOVE I feel a sigh of relief.  I don’t have to have any expectations with LOVE.  It is all around me.  It is all around us.  I just gotta let myself feel it and feel it even more.  You know earlier I said without LOVE I don’t believe I’d survive right now.  I also want to say that without multiple sclerosis, lupus and IBS I don’t know that I’d understand LOVE the way I do now.  I had to slow down. To smell a flower.  To watch a flower. To look up.  To see the tall trees.  To see the clouds.  To see the sun.  To see the birds fly and float in the wind.  I have had to talk to more people in general.  To connect in ways I have never had to do before.  I have had to survive.  Right now I have so much LOVE surrounding me and given to me that I’m really trying to let it all in.  I’ve learned I don’t let it in enough.  Breathing it in helps the most.  One of these days I’m hoping to feel settled enough with this Nahleen I’m getting to know so that I can give out all this LOVE I feel to others who are in need of it without depleting myself too much.

And with LOVE–LOVE has helped me know my name.  That is one of the lines of this wonderful and passionate song Seal sings.  I wanted to share it with you all.  The more I hear this song the more it changes me inside and outside.  It has changed my life.  Thank you Seal.  Thank you all.  I hope it touches you as much as it has touched me.

It always seems to me like healing should be something soothing and soft and gentle. Sure that happens sometimes in the process of healing. Then again, there are those skinned knees that scab over again and again and no, that’s not comfy at all is it? Lately it’s been some of the hardest crud I’ve gone through. And I mean crud. Yet deep down I feel like it’s time. This is it.

As I’ve mentioned before, I’m now seeing a Chiropractor at least once a week. He wants to see me twice a week but so much crud (he uses that word and I’m starting to use it again) has been coming up that it takes me a week to heal from it. Yet, it’s all a good healing. I’m beginning to feel like I can become a whole person. I feel better even though my body gets twisted and contorted in weird ways. And/or he has me working on some emotional healing within the therapy.

Right now his new technique for me is something called NET or Neuro-Emotional Technique and it is fascinating. I can’t really explain it except that he was able to tell just by pushing down on my uplifted arm and putting his finger in the middle of my forehead that I had emotional blockage somewhere in my body and that that was playing a huge part in my physical symptoms and my messed up mind these days. It was crazy. When he didn’t put his finger in the middle of my forehead and pushed down on my arm I was able to push back up. When his finger was on my forehead and he pushed on my arm it went straight down and I had no strength to push back. He had basically disabled my arm. CRAZY AND FREAKY. Apparently it’s sooooo many emotions that are just flying all over the place and I’m not sure what to do with all of them so my body stores them for me and well, let’s think, that’s probably not good huh? So not only am I dragging up feelings and emotions but now they’re all just apparently free to come on up even when I didn’t invite them.

CRUD CRUD CRUD.

I’m also going to a Therapist now who I believe was sent to work directly with me. She loves the color purple, she’s bright and peppy, her office is close to where I live, and she’s also very compassionate and knows how to reach me in ways no one else seems to be able to–even ME! She’s revealing a part of me I didn’t know existed or just wasn’t ready to know or something. Talk about uncomfortable YET it really is helping. I feel like I’m getting detoxed of yucky poisonous feelings. She’s cracking my shell and the feelings are just flooding out.

Apparently it was time for all of this to come up. Wish I had gotten the memo from me that it was time to really work on all this stuff.

It’s kinda crazy how it happened that I found these 2 very important Specialists on my path right around the same time.

Next thing I know I’m in the Chiropractor’s office at the first appointment and I’m wondering how I got there and how is it that it all happened so fast. I mean my friend had just been raving about him and there I was. Then I end up having 2 doctors arguing (and not even knowing it) over a medication I’m on and telling me I should see a Psychiatrist to see what the actual Specialist says about it all and the next thing I know I’m in a Psychologist/Psychiatrist’s office and again, kinda wondering how I got there.

I’ll repeat, it would’ve been nice had someone informed me this was all gonna happen. Don’t get me wrong. I didn’t black out and become another person or my alter ego…at least I think I didn’t…no really. I remember asking about these 2 Specialists but I don’t remember deciding to take the action. Hmmm, could it be that I’m not taking FOREVER to think it all out as much as I used to and perhaps I’m going more with my gut? That I’m following the Path I’m supposed to be on and just doing it?

Still…WOULD’VE BEEN NICE TO GET THE MEMO.

Just sayin’.

So for now I’m going to try to take the advice of these 2 incredibly valuable Specialists who have already changed my life in less than 6 weeks and try to be patient. They both tell me that crud is going to come up, that things are going to be messy and that it’s okay that things are messy. Really. It’s okay if things aren’t all done my way.

Weird. I mean it’s all supposed to be done and planned in an orderly fashion or at least “Nahleen’s orderly fashion”. Well that’s not happening.

I’m feeling incredibly uncomfortable, exposed, vulnerable and raw and yet I’m feeling the safest I’ve ever felt…whatever that means.

Guess there’s more to find out. I get to find out about who this shiny new Nahleen is I’m becoming. My Therapist encourages the purple hair. She says it’s only the beginning. Now it’s time for more piercings and tattoos according to her…She’s convinced there’s a much more wild and open Spirit in me just desperate to come out and she’s trying to gently tell all of me that it’s okay to come out.

So for now I just keep on trudging through the crud. I feel like a clam who just lost its shell and now waits to be eaten by the predator who broke that shell. Poor clam. I feel so bad for it. Must be awful. I’m such a softie. Hey that can be my new Activist project. SAVE THE CLAMS!

Perhaps another time…Continuing on this side note, I’m so relieved I don’t like to eat clams or I may have just ruined any chance of ever eating them again.

What’s cool is I’m pretty sure I won’t be eaten and that I’m going to be OK. Crud and all.

YES, A FULL YEAR!

I AM WRITING IN ALL CAPS BECAUSE IT’S WORTH IT! I’M SO EXCITED!

I JUST COULDN’T HIDE IT!

And no I will not break out into a Pointer Sisters song even though I’m tempted to.

I HAD TO SHARE THIS WITH YOU ALL!

TIME TO CELEBRATE!

AND USE EXCLAMATION POINTS!

YAY!

!!!!!!!!!!!!!!!

Yeah you multiple sclerosis, lupus, IBS and any other physical issue associated with my body that causes discomfort. I’M TALKING TO YOU!

Why is it that when I CRASH into FEELING CRAPPY mode it takes no time AT ALL usually to get to that place BUT it takes a bazillion years longer to RECOVER, FEEL BETTER and HOPEFULLY MORE LIKE MYSELF?!

Here’s the other part of that:

Why is it that when I’m RECOVERING I may not actually get back to where I was but a different place? It may not be a worse place mind you, but a DIFFERENT PLACE?

CONSISTENCY OF BETTER WOULD BE NICE.

I know I know. I’ve been asking for this for years and it still hasn’t happened BUT I’M STILL GOING TO RANT ABOUT IT FROM TIME TO TIME!

DANG IT!

I’VE SO HAD ENOUGH OF YOU MAKING ME FEEL CRAPPY! NO MORE! YOU’RE ALL DONE! GO AWAY! (Yes I know it was probably more side effects from a poisonous medication yet I still have the same feelings about it–after all I am trying to have a life).

And you’re still here with me and I’m still recovering…WITH YOU.

Back to resting…to feeling sad…to feeling frustrated…to feeling relieved…to be feeling like I’m turning the corner to me again.

The key word being:

AGAIN…

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!

“*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

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.

I’M SO HAPPY TO BE BACK I CAN ALMOST HUG YOU BLOG!!!!  OH BLOG HOW I’VE MISSED YOU!  I’VE MISSED YOU ALL!

At least a year ago a good friend of mine referred to Bonnie Raitt and this beautiful song.  I think it’s been my theme song ever since.  Thank you KF.  Thank you Bonnie Raitt. And now I ask you to watch and listen.  I have a feeling a lot of you can relate to this song.

I WILL BE BACK SOON!

I can’t wait!

Oh and remember WE WILL NOT BE BROKEN!