Posts Tagged With: multiple sclerosis

Doctors: Please Take ME Into Consideration

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!

“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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Consistency Would Be Nice

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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Telling the Truth is Really Hard

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

-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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Victory!: Cambria!

We’re home.  We’re back from Cambria, CA!

We had a wonderful, peaceful, soothing, gentle and adventurous time!  It was so good to get away for a couple of days with Corey and spend some time together–just us.  It has been years since we have been able to do that and I am sooooo happy we did it.

WE REALLY DID IT!

My lupus and multiple sclerosis behaved for the most part.  I had some weird symptoms showing up here and there but for the most part I think I felt better because I was so relaxed and distracted.  My walking every day has really helped in the long run when it comes to my ability to walk around and explore new places and my ability to stand for long periods of time.  I do still get store fatigue but I could stand quite a bit and what was interesting was that the sun didn’t bother me too much until the later afternoon.  The temperature was definitely cooler than LA especially at night but even during the day the temperature might have gone to 60.  Glad I was given a chance to be in cooler temperatures because it sounds like LA is going to get hot over this next week or so.  Blech.  But first things first and one day at a time I’ll make it there.

There was a jacuzzi spa jet tub in the room so that helped my body immensely.  I think if I had one of these I could get into every day my MS and lupus would be very happy.  I’d be getting that massage I needed daily.  Oh well.  One day.  I can dream.  We were also able to get massages before we left to drive home which were lovely.  There was a boarded walkway from our hotel, through the trees and towards the beach.  Wow!  What an amazing walk and sunset that was.  I tell ya.  There’s nothing like hearing frogs and ocean waves at the same time.  I don’t think I’ve ever experienced that.  And the sunset was magical.

The people there seem happy and are incredibly friendly.  We had a conversation with each local we met.  They were so welcoming.  I think perhaps it may have been partly because the economy has been way down since last November but I also really believe that this is how they are in general.

I have lots and lots of pictures to share with you soon once I get them loaded.  This trip came at THE PERFECT time…as my life is hitting the next turning point…there is no mistake we took this trip when we did.

And to finish, I’ll say that years ago we headed north from LA to San Simeon to see Hearst Castle and that was neat.  Hearst Castle is quite an experience.  What a view from up there.  That night we traveled a bit south to see what was going on in Cambria since it seemed like there was nothing happening in San Simeon.  It was dark and the businesses were only open for a few more hours.  Those few hours made a great impact on our lives and we knew we had to come back someday.  Well that someday came this past weekend and after being there for less than 48 hours I can honestly say it has now made an imprint on my soul.  May sound hokey but I believe it’s true.  Actually, I know it’s true.  What a beautiful, spiritual and peaceful place.

UH OH!  I HAVE BEEN BITTEN BY THE CAMBRIA BUG!

I can think of worse things…can’t you?

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DUDE!: 85 degrees in Los Angeles, CA on March 1st?!

I mean I get it.  I live in a desert.  Los Angeles, CA is a desert.

BUT COME ON NOW!  85 DEGREES IN WEST LA on March 1st?!

GROSS!

I read today that today is the first day of Meteorological Spring.  Did LA skip any kind of spring and jump right to summer?!

Um, my multiple sclerosis and lupus are very mad at you weather.  They have been in a snit for the past few days anyway because it’s been in the 80s but today was just too much.  The sun has also been crazy intense and we aren’t even in the summer months yet.  Plus you jumped from 65 to 80 within a few hours and haven’t dropped below 80 during the day for a few days.

What happened to rainy season?  Are we not getting it this year?  That’s so uncool too.  We already basically live in a drought day in and day out.  We never really get the amount of rain we really ever need and I just heard that yesterday there was a brush fire in Riverside.  Now granted that’s pretty far away from where I live but it tells me we are in big ole trouble this year if this continues.

So this is the part where I start being really sappy nice to you weather because I mentally love you and am fascinated by your whole being.  Can you bring the temperature down about 15 degrees???  I think 70 is fabulous with a light breeze and some cool white puffy clouds in the sky.  Just lovely.  Some birds chirping would be nice too but I digress.

PLEASE PLEASE PLEASE don’t last 85 degrees.  I get enough of those days during the very long LA summer and have to deal.  But March 1st is really hard to deal with.  It puts a whole damper on me and my life.  The sun and heat fatigue start and well that’s just yucky…

OK?!  ARE WE COOL?  CAN WE COME TO A COMPROMISE?

I’ll even deal with 75 degrees.  That’s OK too.

Just some thoughts…you know.

I hope I wasn’t too rude earlier.  It just gets me upset when I’m too hot and too sunned and it takes NOTHING for me to go there and then I get cranky and I don’t like that.  An un-cranky Nahleen is better.

SOOOO YEAH.  I guess I’ve stated my case.

Hope you listened, understand and can help me out…

THANKS!

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GO AWAY LUPUS AND MULTIPLE SCLEROSIS!

DO YOU MIND BODY?!

I’M TRYING TO HAVE A LIFE HERE.

GO AWAY LUPUS, MULTIPLE SCLEROSIS, IBS, SINUS ISSUES, SENSITIVITIES TO EVERYTHING ELSE IN THE WORLD IT SEEMS LIKE! I’M DONE WITH YOU TODAY!

Of course, I’ve been done with you before you even started but I don’t want you here. Can’t you see I’m busy? Can you see I’m trying to expand my life? Can you see my mind’s busy? Yeah, I know that you get tired of my busy mind but I have given up and changed so many things in my life for you. MY MIND IS SOOOOO LESS BUSY THAN IT USED TO BE AND YOU KNOW IT BODY…

WHY DO I HAVE TO GIVE UP MORE TODAY?

ENOUGH!

Sure, I’m better than I was a year ago or perhaps even 6 months ago. Well that’s all good and I’d like to celebrate but not today.

I DON’T WANT TO CELEBRATE!

And if I did celebrate would that wear me out too? Would my butt still feel like it’s kicked? Would my hands still hurt while typing this? Would any activity take the wind out of me before I even really started it?

YES there is weird different weather happening. I HAVE NO CONTROL OVER THAT. It was 85 in LA for 2 days and then just warmer in general and now a big COLD storm is coming which I started feeling a week ago and my body is CONFUSED!

OK. WELL CONFUSION DOESN’T MEAN I HAVE TO STOP EVERYTHING!

LEAVE ME ALONE!

HOW DO I EXPAND MY LIFE WHEN YOU KEEP GETTING IN MY WAY?!

Sure I just had 2 doctor appointments last week and both doctors said they thought I was so much better.

BETTER….

BETTER….

CAN SOMEONE PLEASE TELL ME WHAT THAT MEANS EXACTLY?

BETTER….

Yet here I am with my butt feeling kicked again and feeling CRAPPY. What’s weird about today is that I’m having symptoms that I CANNOT DESCRIBE. I guess I just need to call them WEATHER SYMPTOMS…

AND THIS IS ME! I’M A WEATHER GEEK FOR GOODNESS SAKES! I LOVE THE WEATHER! I WANT TO BE FOCUSED ON THE EXCITEMENT OF THE IDEA OF “YAY!” WEATHER IS HAPPENING IN LA! HOW COOL IS THAT?!

Not.

Cool.

When.

I.

Have.

MS.

And.

Lupus.

………………………………

And yet somehow I just keep on going and am able to write this. I had to get it out. I’M SO FRUSTRATED! And the world keeps turning despite how I feel. And I look out the window and watch as people go along with their day…and they have NO IDEA what I’m going through and I have NO IDEA what’s happening in their lives.

AND LIFE GOES ON.

And yes I will be excited about the weather.

BUT.

The

MS

And

Lupus

Will Still Be Here With Me Through It All…

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It’s So Hard to Have Multiple Sclerosis and Lupus and…Part 3

…and BE ME…

…and HAVE LIMITS…

I mean, let’s face it.  I’m a hard person to be.  I have goals.  I have ambitions.  I am a Go-Getter.  I am a Type A Personality by Instinct. The first idea in my head is GOGOGOGOGOGOGOGOGO!!!!

There’s no room for LIMITS…

Hmmmmmmm……

Welllll……

That’s really hard to deal with when I have multiple sclerosis and lupus.  I’m not even mentioning the digestive symptoms and syndromes, food allergies, environmental allergies, any infections that I might be fighting off, the fun womanly once a month irritations, sinus symptoms and issues, my crazy GOGOGOGOGOGOGO head, or even headaches that might come and go here and there.  I mean really.  I don’t get a chance to GOGOGOGOGOGO.  And if I do by chance get back into that habit, I am in TROUBLE and back on my butt FEELING AWFUL FOR SOME REASON…

UGH…

Sure that’s probably a really good thing.  Actually, it’s a blessing that I am grateful for quite often.  I’m grateful that I have to take it slower and actually see my life go by.  I don’t get a chance to be sprint through it.  I get an opportunity to get to know myself (scary sometimes yet really nice to do), to get to know others out there in the world who are cashiers and other customers for example, to smell the flowers, to really take care of my plants, to love on my dearest Cleo Kitty, to sit and just BE (so hard sometimes), to take my time, to look at the sky, to watch the world, to take a few extra breaths and maybe even DEEP BREATHS here and there…

BUT I WANT THE CHOICE to GOOOGOOOOGOOOO…or Do I?

I really have no idea.

I just don’t like having multiple sclerosis and lupus.  That’s just it.  I can’t stand them.  I want them to go away.  If I’m not careful I get sucked into a black hole of “Why me?” and “What did I do to deserve this?” and “Why won’t they just leave me alone?” and the list goes on and on…I think I could go on forever in what I call “WHOAISMS” and sometimes I believe I’m allowed to do that.  But I hope I have something to pull me out and I usually do.

So then I need to really work on spirituality whatever that means to me that day.  I could be meditating.  I could be actually letting myself sleep if my body and schedule allows.  I could be looking at the flowers.  I could be beating on my Bongos.  LOVE THAT by the way!  Seriously, if you have anger, I suggest you find something to beat on as long as it’s not yourself, or another living being, or something you’re going to damage—hmm….maybe I shouldn’t have mentioned to find just anything to beat on.  For a long time I’ve used the Hulk Hands that are out in toy stores that Corey has bought me (the first pair really was the best) that actually had Hulk’s voice and yelled, “Hulk Smash!” and would growl so when I put them on I got to laugh and feel big and strong and punch the wall.  I don’t recommend punching a wall without that kind of cushion.  PLEASE BE CAREFUL WHATEVER YOU DO.

But then now I have these Bongos and that’s great but I can’t just jump in and do a long set of banging.  I have to pace myself and only do it a few minutes at a time and build up to longer because then my hands and arms hurt.  Well, that’s just great.

So that’s what I mean, I’m always putting limits on myself and what I can do but in TRUTH: THERE REALLY ACTUALLY ARE LIMITS.  I’d like to continue to be able to use my hands and arms which are the most affected by both my lupus and MS and I’d also like to not feel the pain and throbbing from having overused them…on the bongos that I just enjoyed banging on to help me relax and calm down…

Then there’s the exercise.  Exercise is great to keep me flexible and stable.  Yay.  Go me.  Notice I’m not too excited about it.  Some days it feels like real work and like my body is complaining the ENTIRE TIME.  Then other days my body is thrilled and wants to be stretched and moved even more.  But again, there are actual limits if I want to keep functioning.  It is cumulative.  However, WALKING HAS BECOME MY THING.  I am well on my way to having walked 300 days in a row by the end of February.  AND THERE IS A LIMIT TO THAT.  I need to NOT JUDGE myself about walking and what I did that day.  I need to not push myself to walk an hour every day.  I need to be willing to only even walk a few minutes if that’s all I can do.  The TRUE BENEFIT comes out of keeping my legs and body moving and honestly, it’s helped my mind immensely too.  I have so much more confidence now than I used to in general just because of walking but they have truly loosened up and become more stable, strong and can endure more.  They DON’T complain that often anymore.  And by now it’s become such a habit to take a walk that I can’t imagine my life without it.

But then there’s trying to have a life.  I know.  Crazy.

A LIFE.

You know, that life where I can socialize with people, maybe even have some real friends out here in LA, maybe even keep in touch with the friends and family at a distance, spend more time with my husband, get out into the world and do things besides grocery shopping (although that is important too), and doctor appointments, and medical tests and be on the phone with something regarding Disability, Medical Insurance, following up with doctors, finding an attorney for a legal issue, filling out paperwork and the list goes on.  And what about being creative?  I yearn to be creative but I can’t do too much OR I have to slow down and my body asks for it.  But when will that happen?

WHEN AM I DOING TOO MUCH?  WHEN IS IT WORTH IT TO PUSH IT?  WHERE IS THE LINE?

There is no pattern or predictability.

Again, the worst part about these diseases is the UNPREDICTABILITY.

For goodness sakes, if only they were PREDICTABLE.  What a different world it would be.  I might be able to make plans and keep them.  I might be able to sign up to take regular hobby classes or regular ANYTHINGS.

I mean, let’s not forget it takes me at least 4 hours to get ready in the morning if I’ve included waking up, stretching my body in bed to get it moving again (tends to get stuck and stiff from sleeping if I’ve slept that is), do more stretches to stand up, follow a spiritual way of life (numerous ways to do that and I try to be creative with that), probably go to the bathroom (I know TMI), take a few pills, feed and be with my Cleo Kitty who has health issues of her own and is desperate to eat by 7am or ELSE, try to wake up a bit more before eating and taking more meds, plan out my day, get stuff ready to go if I have a medical appointment and I usually have at least one a week (the next 3 weeks I have 2 each week–goody gumdrops for me), pull myself together meaning exercise to the best of my ability to wake up my body, take a shower which is an event in itself and can take a lot out of me, not to mention brushing my teeth (an electric toothbrush is best so I can save my hands and arms and their energy), get dressed, try to make my hair look presentable (thank goodness for purple short hair so it’s already kinda cool and easy), pet and love my Cleo Kitty who always needs extra love and well so do I, make sure I wear my hat to protect from the sun, wear my sun protective jacket or at least a shirt with longer sleeves, get Cleo ready for me to be gone, make some sort of business calls if I have the chance, try to sit and rest here and there because it’s a lot to ask my body since so much activity has already happened, try to maybe wash the dishes or at least some of them, sort through any weird symptoms I’m having and do my best to take care of them, and the list can still go on.

THAT’S JUST THE MORNING EVENTS…no matter what even if I’m feeling crazy fatigue–I may go back to bed but what if I can’t because I have an appointment?  I’ve gotta get through it.  I’m so exhausted from thinking about my morning and writing about it that I haven’t even written the next parts of the day where I have to keep myself in check and have all my meds sorted out to take and make sure I take them on time and have meals at good times or I end up feeling worse.

And there’s always laundry to be done.  Can I do it today?  Should it wait?  What if we need underwear?  (Hey, I’m being honest).  And what about groceries?  What about the “What abouts”?

What’s the real priority?  There’s always some sort of life that needs to get done and if I let it go it’s still there tomorrow and I have to try to be ok with not getting it done YET.  I’ll admit, that is one of my biggest struggles.  LETTING SOMETHING GO UNTIL TOMORROW…OR ANOTHER DAY…OR ANOTHER DAY…

YET SOME THINGS CAN’T WAIT…

I’VE LEARNED TO LET GO OF A LOT BUT THAT DOES NOT MEAN I’M OK WITH IT.

So life just keeps on happening.  I keep having multiple sclerosis and lupus along with all the other syndromes and issues and the world keeps spinning.  Thank goodness for choices but it’s still so hard sometimes.  I really have eased up on so much in my life and with my expectations but it takes a strict way of thinking that I really can’t get lazy with too much (sometimes it’s a wonderful thing but I can’t let go of it too long or I lose myself again and may go back to pushing too hard)…

SO I GUESS I’M STILL LEARNING…

THESE CHRONIC ILLNESSES I TELL YA…

There is just so much I can say about them and so much I don’t have the words or energy to talk about.

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