Monthly Archives: May 2013

Today Is World Lupus Awareness Day!

“I can’t diagnose you with Lupus now but I can tell you that you have enough of the list of Clinical items we look at to diagnose you with it eventually that it may come up for you in the future. I’m so so sorry I can’t diagnose you now. But please PLEASE make sure to keep it somewhere in the back of your mind for the future when things are at your hardest because this will likely come up in the FUTURE. I know you don’t want to hear that but it will be important to remember.”–That’s what my first Rheumatologist drilled into my head 11 years ago in 20012, as I was on the journey to find out what was wrong with me in the first place. I have no doubt she was an Angel sent to help me find out the VERY HARD way that I had Multiple Sclerosis.

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.

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Love Will Help Me Know My Name

First of all thank you to Seal for this absolutely amazing and beautiful song.  You and this song have carried me through many many hard times.  Too many to count.

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.

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The Crud of Healing

I’ve been sort of MIA lately because I’ve been doing a lot of healing. And man is it hard.

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.

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