Posts Tagged With: lupus

Doctors: Please Take ME Into Consideration

Posted on June 2, 2013 by Nahleen

Full Name: Nahleen Virginia (Knight) Blake. Knight is my Maiden Name. Where did Nahleen come from? Well funny you should ask. I’m sure I’ll have to repeat to you over and over how to say it and how to spell it but let’s get it right the first time. What’s the significance of Virginia? It’s my Grandmother’s Name.

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.

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Today Is World Lupus Awareness Day!

Posted on May 10, 2013 by Nahleen

“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

Posted on May 9, 2013 by Nahleen

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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Consistency Would Be Nice

Posted on April 26, 2013 by Nahleen

Um yeah hi ILLNESSES!

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…

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Sucky Side Effects Suck!

Posted on April 25, 2013 by Nahleen

Tried a new nasal spray twice in 3 weeks.

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

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

WRONG!

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

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

UMMM HMMM…

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

DON’T THINK SO!

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

SOOOOO, no new combination nasal spray medication for me…

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

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

GRRR!!!

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

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

Yes I said ANY BIG EMOTION…

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

Guess I should go rest again.

HARRUMPH!

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The Path of Least Resistance

Posted on April 24, 2013 by Nahleen

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

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

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

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

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

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

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

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

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

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

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

Love,
Nahleen

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

Posted on April 2, 2013 by Nahleen

175 Blog posts I’ve written!!!!!

WOW!

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

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

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

Here’s what I found in a store:

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

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

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

MY LIGHT FROM WITHIN IS MORE IMPORTANT.

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

I’M WHAT MATTERS…

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

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

SO COOL!

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

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

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Telling the Truth is Really Hard

Posted on March 27, 2013 by Nahleen

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

I TOLD THE TRUTH!

DETOX IS HARD!

ANOTHER TRUTH!

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

MORE TRUTH!

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

YES I’M YELLING!

PHEW!

It feels so good to get it out.

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

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

OY!

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

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

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

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

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

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

BY 12PM I had HIT A WALL.

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

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

RESTING HELPS.

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

SO GLAD I CAN WRITE THIS.

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

DONE.

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

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

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

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

WHERE DOES IT ALL FIT IN?

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

DO THEY EVER?

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

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

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

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

 

 

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325 DAYS I’VE BEEN GRATEFUL TO TAKE A WALK

Posted on March 18, 2013 by Nahleen

-GRATEFUL to be able to move my legs.

-GRATEFUL to be able to stand up.

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

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

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

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

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

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

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

EVERY.

DAY.

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

EVERY.

DAY.

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

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

WALK.

AND WALK.

AND WALK.

IT HELPS SO MUCH. My legs have improved greatly.

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

WHAT A GIFT.

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

Posted on March 15, 2013 by Nahleen

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

ANYWAY…

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

DANCE!

MOVE MY BODY!

SHAKE IT OUT!

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

LIES!

WHATEVER!

DON’T PUT A LABEL ON IT!

JUST MOVE THAT BODY FOR GOODNESS SAKES!

LET OUT THE TOXINS!

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

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

How’d it feel?

You don’t know.  WELL MOVE SOME MORE.

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

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

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

OXYGEN ROCKS.

BREATHING ROCKS.

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

I KNOW!

I WENT ALL OUT TODAY and you know what?

IT HELPED ME SO MUCH!

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

AMAZING.

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

Oh and the best part is:

IT’S FUN!

I KNOW.  HEALTHY AND FUN.

CRAZY!

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

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

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

 

Now

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