Posts Tagged With: medication

The Crud of Healing

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

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

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

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


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

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

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

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

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


Just sayin’.

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

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

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

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

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

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

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

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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?


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!


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:


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Sucky Side Effects Suck!

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?


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…).


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…


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.



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



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

Guess I should go rest again.


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“Your Body Has a Lot to Say…”

–said Dr. “D”, “…Don’t think about it as having problems and limitations.  I like to try to look at this way.  It’s more that your body just really likes to and wants to give out a lot of information about where it wants help.  It’s very open and willing for someone to listen to it.  It NEEDS help.  It’s asking for it.”–that’s pretty much what I remember the Chiropractor saying to me today at my first appointment as he did his first information intake about my body to test EVERYTHING POSSIBLE.  I had physical tests done that I’d never had done before and it showed me I had EVEN MORE “limitations” (or that’s how my perception is about me) and I was commenting about it sarcastically on the side with myself and him.

He really didn’t seem to see it that way.  It was the first time I had EVER been around ANY medical professional of any sort from all sides of medicine whether it be Western or Eastern or any type of medicine in-between, that he didn’t sigh out of distress about what he found out about my body.  He didn’t seem too stressed about it.  He was JUST taking in data…just looking at and observing what my body was COMMUNICATING to him.  That’s what it felt like.  It was DEFINITELY the first time ANYONE looked at my ridiculously crazy long medication list that actually has gotten shorter (but you’d never know it by glancing at it and especially as a new person to my body’s situation) and said “THIS IS AWESOME”!  Not kidding.  He was baffled at what I was on and what I was going through but he didn’t show he was baffled.  Just those words said it all.

So not only did he seem to observe my body on his level (if that makes any sense) as a body that might be able to benefit from his care BUT he also was funny, normal, seemed to have no ego whatsoever yet was quite confident with what he does and what he knows, he had me sit on a table and sat on a stool looking up at me yet I still felt like I wasn’t “below” him in any way or “above” him either, I didn’t feel too self-conscious when he had me stand so he could look at my posture or walk down the hall and back.  Plus when he asked me when I thought I was EVER at my ideal weight (didn’t say anything else about how much I weighed or that he was concerned about it or that I was overweight or that I needed to go on a diet OR ANYTHING OF THE SORT) I laughed and then he saw the perplexed look on my face and said, “When you were born?” and I said, “YES!  I think so.  I think I was at an ideal weight then.” He DIDN’T HAVE TO POINT OUT THE OBVIOUS WHEN IT WASN’T NECESSARY.

After all the data was gathered he said he’d go over all the information (he actually wanted to take some real time to look at it and not just jump on me at that point with some treatment plan of sorts without knowing what he was getting into) and he’d like to see me within 72 hours to go over the results so that we can decide together if we were a good fit and whether he would accept me as a patient or not.  I asked him what that meant (he even asked me if I had questions which is amazing.  I know to ask anyway but it was nice to be given that opportunity.) and he told me that sometimes it might mean he needs me to do some more diagnostic testing elsewhere, he may need to talk to my doctors first (he wants be a TEAM with them about EVERYTHING!–FINALLY SOMEONE WHO WANTS TO DO THAT.) or there may be some other reason but he wouldn’t know until he had a plan in place.  And then there was the factor of me agreeing to the treatment plan and then we could go from there.  It’s TEAMWORK on all sides I guess.


We’re all in this together.


So after hearing a dear friend of mine mention this “Dr. D (will call him that for now)” soooooo many times and tell me how great he was and what he’s done to help her and how much better she feels after seeing him I figured it was time to FINALLY check out how a Chiropractor could help me.  I had a Chiropractor on my list as a idea of treatment options to check out and since acupuncture is NOT covered right now by my insurance I thought it was time to try something new and it all fell into place.  Plus his office is NOT far away from my home so that helps A LOT.  BIG PLUS.

I see him Thursday.  My homework is to give him a list of my doctors (Ha!  I wonder if he’ll say “THIS IS AWESOME!” again when he sees how long the list is and what different kinds of specialists I have) with their contact information because he wants to be in contact with ALL of them (no way, crazy thought) and his homework is to assess me and all the information my body was apparently so willing to give out.

So from now on I’m going to try to keep the perspective in mind that it’s not that my body has limitations, it’s that it needs a lot of help and is willing to give out any information anyone needs if they are willing to listen.  It’s also willing to get the help if it can.  I am willing too so that helps.  We can all work together.

Definitely curious to see what happens…

Will do my best to keep you all posted as I can.

Right now it’s time to rest.  Being proactive is tiring…

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THIS IS MY 150TH BLOG POST!  Woo hoo!  Go me!  I think part of me was holding off posting this HUGE MIND BLOWING BLOG POST for my 150th because my goodness, it’s my 150th post!  There should be fireworks and you should all be touched FOREVER by all that I have to say. 

OK.  Well, first of all…EGO.  Yes, I have one.  It can get in the way but it helps sometimes…I suppose.  Second of all, WHAT THE HECK?  Fireworks?  Really?  I’m so weird.  I get one compliment from someone and I feel like I don’t deserve it and WOW “they really like me” and my favorite quote that Corey always teases me about, “I’m just being me” as if I’m not good enough for a compliment.  BUT THEN, I want to have words that LIVE ON FOREVER AND EVER?!

Well, no wonder no Blog was coming out.  Conflict and pressure.  Geez!


To be honest with you, I don’t know what’s going to come out of these hands as I type.  My head has been all over the place and there has been so much of life happening that I think it almost silenced me.  I know.  HA!  Yeah right!  But it kinda did.  I mean, I had to have a Blog post in order and outlined (not that I ever have…Ahem) before it had to be written.  I had to have a clear head before I wrote it.

Um, it’s the New Year.  Is anyone’s head clear right now?  Is anyone’s head EVER clear?  Really clear?  I mean, like it’s all in order.  I doubt it.

So here I am and this may be a stream of consciousness.

BUT before I go any further, I want to make sure to hit on a few things before I go off on tangents again:

1. HAPPY NEW YEAR 2013!  Turns out the world DID NOT end and we are all still here…I think.  Well as far as I know.

2. WELCOME to all my new followers.  Thank you for helping to encourage me that past posts are worth following.

3. THANK YOU to all of you for joining me on this crazy journey called life and what I like to call, “Life In Nahleen’s Head”…I hope you’re all wearing your seat belts.  My head can get crazy and I’m sharing it with you.

4. TOPIC (at least I think this is what the topic is for this Blog) “LIFE: ALWAYS IN SESSION”.

You know, the first time I heard those words from a very wise person I know, I was beside myself.  How profound that sounded.  How simple that idea is.  Life is always in session.  There’s always something going on.  There are always errands to run, people hurting, happy people, the weather continues to change, and really nothing stays the same does it?

So why is that idea so hard?  Why is it that it’s so hard to accept that life is always happening and changing?  Well, for me it’s that YET AGAIN, I gotta morph to it and be flexible.  Ew.   AND if a new event pops up in my life, that doesn’t mean the rest of life STOPS.  Wouldn’t that be great to be able to stop all of the other stuff, you know like stop time whenever we want and how we see in fantasy/sci-fi movies and they make it look so easy with their special effects, that we STOP everything else so that we can take care of this SPECIFIC thing that’s happening?

But then, if it’s something that’s really hard to deal with, then we have to be ready to deal with it.  So, then when do we stop the rest of what’s going on in our lives?  And hey, maybe we don’t want to stop that other stuff.  Maybe it’s the other stuff that helps to keep us going right?  Or maybe it isn’t. 


I had to add that extra part because well, it’s how I feel most of the time even if there is more than one good thing going on, well then what comes first?  How do I prioritize?  How do I process it all in my crazy filled head?  Isn’t it already filled to the brim?  How can it take on more?  Should it take on more?  Does it need to be handled right away?  WHAT’S GOING ON?


Then I turn into the loveable Tasmanian Devil from those wonderful Looney Tunes cartoons of the past and away I go.  But where do I go?  Usually I’m just spinning in place.  But if I’m spinning, I probably don’t have my feet firmly on the ground now do I?  I probably haven’t paused to breathe. 


What’s breathing?  Well, there’s the involuntary breathing that thank goodness our bodies are already programmed to do.  Thank goodness for that huh?  I mean, imagine if we didn’t have that involuntary process.  Hmm.  Oh how different life would be.  Would we make it as humanity?  I don’t know about you, but quite often I find myself forgetting to take those intended deep breaths that help get the oxygen into my body and brain and usually help me to relax and calm down even a teensy tiny bit.  So then I’m sort of I guess holding my breath.  Well that’s not good.  The body needs to be doing both kinds of breathing in order to survive the best way: involuntary and voluntary.


Well, somewhere along the way in late October or November (or maybe I had never REALLY found myself even a bit at all) I LOST MYSELF.  Where’d Nahleen go?  I’m sure she was there.  I speak of myself in third person on purpose.  She was out there handling the world the best way she knew how.  The holidays were coming upon us.  Cleo Kitty was going through a bit of a hard time and we had to cancel our little Wedding/Together Anniversary Trip to stay with her.  Wouldn’t have changed that for anything but I think it played a part in things.  (I haven’t had a chance to get away for over a year due to either my health or Cleo’s, both or just life reasons in general and I’m feeling it.)  But then, Cleo got so much better and we nursed her back to health, after bringing her to her wonderful new vet who was ONLY a second opinion vet for her back in February of 2012 because we thought she was dealing with cancer. 

BUT then come to find out a few weeks later with a very different care regimen for Cleo, that she was UNDIAGNOSED with cancer because it had been a year since her DIAGNOSIS OF PROBABLE CANCER (Corey and I had made the decision along with Cleo, NOT to do any invasive testing on her and to just let her be a kitty and keep her comfortable as long as she needed it) and as her new vet told us, she was showing NO SIGNS of these probable cancers and she DEFINITELY WOULD BE BY NOW–and that was in November 2012 I believe.

Well, then how AWESOME WAS THAT?!  A true MIRACLE!  I would love there to be more UNDIAGNOSES FOR ME AND ALL MY LOVED ONES AT THIS POINT.  She does however have a very sensitive immune system like I do (oh the parallels of our health together can get a bit too creepy sometimes if I think about it too much) and probably has asthma, IBD of some sort and probably chronic upper respiratory infections that will affect her off and on so we gotta find balance with that.  BUT STILL!  As Corey put it, there was no DARK LOUDLY TICKING CLOCK (Edgar Allen Poe comes to mind) HOVERING OVER OUR LIVES ABOUT how many days Cleo had left.  Sure, she’s older and has immune issues but her life is wide open.  AND YOU KNOW WHAT?  She’s doing EVEN BETTER now.  It helps to be told you don’t have cancer and to see that your people are even brighter about you now I’m sure.  I believe she’s more youthful than she’s been in a LONG TIME.

So yay about that right?  OF COURSE!  But I think it lifted me off the ground even more and it was hard to trust anything after that.  What was real?  What wasn’t real?

THEN THANKSGIVING HAPPENED.  That was a great day.  It was so nice to be of service to others.  Corey, our friend Aaron and I volunteered at a big event that welcomed ALL to come together as a COMMUNITY and cook, eat, cut hair, make crafts, have a kids carnival in the morning, dance, sing, get free check ups from doctors, get family photos, give away and pick up free clothes and the list goes on and on.  Apparently, the event was an absolute success.  I had the PRIVILEGE of being a VOLUNTEER to sit and eat with people and talk to them.  Well, that’s no problem for me now is it?  To be honest, it was a bit awkward at times.  Usually if it was a family I sat with (I think I sat with at least 4 different families as the event went on) and there were kids, it was the kids who were talking to me, not the adults.  Well, that was fine.  I love kids.  I always have and find them very easy to talk to.

MEANWHILE, as all of this was happening, I was still waiting for Social Security Disability to come through and get their payments to me correctly because it helps to have money but at the same time, I saw all of these people who had so much less and it started to not matter.  At some point along the way, I don’t even remember the day which is AMAZING, they did come through and it looks like the payments are FINALLY coming in right after 2 years of waiting for them to get it right.  Still have a few things to iron out with that but I’m ok.

I DON’T REMEMBER THE EXACT DATE THIS ALL CAME TO A HEAD, (again, Amazing that I don’t have the exact date etched in my head), BUT MY DIGESTIVE SYSTEM STARTED FLIPPING OUT AND I COULDN’T EAT ANYTHING WITHOUT FEELING LIKE MY STOMACH WAS LURCHING AND TRYING TO JUMP OUT OF MY BODY.  I’m convinced that the writers/producers of the movie “Alien” had had digestive problems of some sort because THAT IS WHAT IT FELT LIKE…I couldn’t eat a half piece of toast without feeling like my organs were trying to jump free from my torso.  SOOOO, after being on those HORRIBLE digestive antibiotics for what I’m now finding out was way too long, I found myself in the ER.  I had asked my original Gastroenterologist at the time if I should go and he told me NO.  Well, it’s a good thing I listen to my own body because I called Corey and asked him to come home from work and drive me to the ER.  I couldn’t take it anymore.  It was the day of the huge storm Sandy on the east coast.  I think my timeline is off here but oh well.  Anyway, I remember that because there was a TV in the ER Exam Room I was placed in and I got to be entertained and mortified at the same time (I’m a weather geek but I do have a heart) while I felt so horrible.  They did bunches of tests and gave me some drugs, said they didn’t see a lot but sent me on my way.  I did feel a bit better but I needed more than that.  I found a way to be referred to a second opinion gastroenterologist (was a bit roundabout because my group of doctors pretty much all know each other and are all kinda in it to help each other and I knew I wouldn’t get very far asking my Primary because he’d still stick with what the original Gastroenterologist doctor had said to do and that would’ve gotten me in more trouble) and was able to see this new second opinion specialist almost immediately.  What’s great about going to the ER is that all kinds of tests were done and having been an experienced veteran of the ER experience I was somehow with it enough to ask for all files and records of what had been done so that all of my doctors could get these answers.  So glad I did that.  I brought all the records and results to this second specialist and after a few questions (the right questions I guess) I was able to get a fresh perspective about what might be going on with me.  He is now my current Gastroenterologist.  I won’t go back to the old one.  The old one helped me so much for two years.  I need this new guy.  He’s very calm and calming, he knows exactly how to handle a crazy planning person like me, he keeps me much more present and in the moment, he is very clear about what he knows and with his help I was able to be diagnosed with IBS or Irritable Bowel Syndrome.  I’m still currently on a treatment to help get rid of the flare but if you ask me it’s been long enough.  That’s just my head.  Honestly, how cool that this is a medication that I don’t have to be on FOREVER and that my diagnosis wasn’t too hard this time.  He said EVERYTHING I’ve told him of my symptoms and feelings is sooooo common for IBS that he has no doubt.  WHAT???  I have something that was easy to diagnose.  It’s never happened that way before.  Almost felt like something wasn’t right.  With this new doctor’s help I have been feeling much better since.  The flare is not cured just yet and may never be where I want it but with his help, he has GREATLY CHANGED THE QUALITY OF MY LIFE.  I had NO IDEA how much my body was really suffering from this issue flaring up like it was.  NONE.  SO YAY ABOUT THAT.

SO AT SOME POINT THAT FIRST WEEK AFTER THANKSGIVING, a crazy switch went on in my head and I started feeling what I call HOLIDAY AFFECTIVE DISORDER.  Some call it SEASONAL AFFECTIVE DISORDER but I use Holiday instead because I start to really feel different and like the decorations have to be up, the gifts have to be bought, I need to bake, will I feel OK to do any special event and the list goes on and on and on.

SO AS MY HEAD STARTED ITS HOLIDAY CRAZINESS, the next thing I know, I FEEL AS IF THE FLOOR AND THE WORLD ARE BEING PULLED OUT FROM UNDER ME…Why you ask?  Well, the Private Long Term Disability Company that I was also getting assistance from, had been doing a two year review of my health and my case.  They bothered all of my doctors yet again with requests for records, files and very vague evaluations.  Oh and I had to fill out my own assessment form too.  My two years is actually not even up until January 29th, 2013 so isn’t that interesting.  BUT on November 21st, 2012 they decided that they would terminate my coverage and not tell me right away.  BECAUSE OF THIS LONG TERM DISABILITY COVERAGE that I had been paying for at my Old Employer for over ten years while I was still actually working, I was able to be covered by THE AWESOME HEALTHCARE PLAN of my Old Employer up to five years as long as this Disability Company said I was Disabled.  NOW THIS WAS NO SURPRISE that they terminated my Disability Coverage.  I had been warned from the beginning by the first Claim Manager I dealt with in that Company that at the two year mark it would be really hard to get coverage.  But see here’s the thing, I ONLY FOUND OUT because I got something really weird in the mail about how much they were paying me in November (it was much less) and no explanation for it.  So ME BEING ME, I called the Claim Manager to inquire about it.  THIS WAS THE LAST WEEK OF NOVEMBER 2012.  She got a bit tense and quiet and said that oh no, the mail must’ve been delayed for some reason and the two items sent in the wrong order or something but that my coverage had been terminated as of NOVEMBER 21ST.  That was the day before Thanksgiving.  I did my best to keep my cool with her on the phone and made sure she explained the Appeal Process but she really didn’t want to do that and then I got off the phone. 


Well, of course I did.  First, I find out the hard way that I don’t have their coverage.  Then I KNOW THIS MEANS I’M LOSING REALLY AWESOME AND GREAT HEALTHCARE COVERAGE.  So, I called the Director of Benefits at my Old Employer and told her the situation.  I called her on NOVEMBER 28TH.  She told me she was very upset for me and for her department because this Disability Company had put US ALL in a bind.  WHY YOU ASK?  Well, ignoring the obvious reasons of this all sucked, it meant that my HEALTHCARE COVERAGE WITH MY OLD EMPLOYER WOULD HAVE TO BE TERMINATED BY THE END OF THE MONTH.  Yes, you understand.  NOVEMBER 30TH would be my last day of COVERAGE…

WHAT?!  NOW WHAT?!  FREAKAGE GALORE!  The Director of Benefits apologized to me for this situation, I told her how the Disability Company had handled it and told her some more personal things about what I was going through and she was appalled and said that she’d have to really look at their contract with this Company because there is something very wrong with the whole process…


AND YES I’M GOING TO APPEAL…when I can get myself together.

YOU SEE, here’s the thing.  This is how I know I’m being watched over by something–call it the Universe if you like.  Because Social Security had pulled their business with me together FINALLY, they had decided they would retro-cover me back to December 2010.  After two years of coverage, then I’d be eligible and automatically enrolled in MEDICARE.  So I had already received this stuff from Medicare, was having pride issues of being on Medicare at only 35 and having a hard time accepting it but during this state of panic about healthcare coverage that I can’t afford to live without due to my MULTIPLE SCLEROSIS AND LUPUS (hello, I CAN’T WORK EVEN IF I WANT TO RIGHT NOW–THEY DIDN’T JUST GET CURES AND GO AWAY), I managed to pull out the paperwork and see that I had MEDICARE COVERAGE AS OF DECEMBER 1ST for Parts A and B.  I could choose about Parts C and D.  What’s C?  I’m confused about that one and it’s not important.  What’s D?  Oh well, then funny you should ask.  That’s Prescription Coverage that I can opt into in Medicare if I decide to.

OK.  WELL THEN THAT WOULD’VE BEEN FINE AND DANDY WITH NOTICE…However, I had no notice.  Sure it was so miraculous to put it lightly that my OLD EMPLOYER HEALTHCARE COVERAGE ENDED ON NOVEMBER 30TH AND MY MEDICARE COVERAGE STARTED ON DECEMBER 1ST (no kidding there) but I had just had a conversation with the Director of Benefits at my Old Employer two weeks before (neither of us knowing my Disability Coverage would be terminated) and she told me not to worry about the Prescription Coverage Part D Part of Medicare because I could still get that coverage with the Old Employer Healthcare Coverage and all would be fine and dandy and so much cheaper and less dramatic…


MORE FREAKAGE…I honestly could not even do ANYTHING about it all for at least a week.  I was COMPLETELY DEFLATED and at the end of my rope.  Well, sure there was rope but it was a very very thin thread and I refused to even pull at it or even grab hold.  I HAD HAD IT!

SO WHAT DID I DO YOU ASK?!  Well, I found myself suddenly making a hair appointment at a new salon that deals with curly hair (had been coloring my own hair purple for eight months at that time and hadn’t had it cut for eight months either and it needed to be taken care of badly), getting two new hair cuts (the first one didn’t fit me at all and well, I hadn’t had the coloring done just yet–only the consultation–so when I came in for the coloring appointment I had a big heart to heart with my stylist/artist about what I really needed to do with my hair for me at that time and she listened, understood and together we collaborated to cut my hair a lot shorter and get the purple I really wanted.), one of which (the final) will apparently be featured in their salon book because this Junior Stylist/Artist was being watched by the Senior Stylist/Artist and LOVED what we came up with and NEEDED TO GET A PICTURE RIGHT AWAY OF IT TO SHOW OFF TO EVERYONE AT THE SALON AND THEIR CLIENTS.  This guy also told me I was a true artist and it was so much more me.  Going through that whole experience is what I think I needed to find some of me at some point.  At least for the holidays.  I needed more oomph and acceptance of me because I felt so scared and defeated.

THEN: I GOT A CRASH COURSE IN MEDICARE–while still infuriated and hurt and disappointed and panicking about coverage.  Calls were made, notes were taken, website was looked at, advice was asked, and then an hour and a half on the phone with a company that may have handled the Prescription Coverage (the lady was so nice and patient) due to my long list of medications and BECAUSE my MS Medication is such a huge dramatic and EXPENSIVE pain in my butt and always has been in my over 10 years of diagnosis (10 years was December 2nd, 2002…so that was going through my mind too) and I’ve always had to jump through hoops to get it even with a PPO…Meanwhile, Corey was going through Open Enrollment for Benefits with his Company and he kept asking me if I wanted to be on his Plan and from what I could see, it looked and seemed to me like it would be more expensive but I guess I didn’t understand what I was looking at because at the last minute before he completed enrollment, he called me from his work and we went over every detail of the coverage if I was part of his plan and we ended up signing me up with his HEALTHCARE PLAN TOO!  SOOOO, AS OF TODAY, JANUARY 8TH, 2013 I still DON’T NEED MEDICARE PRESCRIPTION PLAN PART D yet….PHEW! 



OH AND SOMEWHERE IN THERE I started getting an upper respiratory/sinus infection and had to hurry to the doctor and be thrown on antibiotics to try to kill it right away because they don’t want to take any chances with me and my diseases and immune sensitivities so that was NO FUN.  But it made the infection go away and I’m grateful about that.

MEANWHILE, we celebrate Christmas and so Christmas was happening…Oh yeah.  That too.  I was doing pretty well at this point.  My body was handling everything very well.  I’D LIKE TO PUT A SHOUTOUT TO MY BODY AND THANK IT FOR ALL I PUT IT THROUGH FOR OVER A MONTH!  It let me do a lot of holiday things.  I even competed in a Cookie Swap Party and won 1ST PLACE with my special “Nahleen’s Special Snowball Snack Cookies” and was so touched and surprised to have won.  I’ve been making those since I was ten I think, so like twenty-five years…Crazy.  I feel old…But so cool to win.  I don’t think I’ve ever won first place for anything.  And you know what, it was a really nice Christmas.  I missed my loved ones back east big time this year but Corey, Cleo and I pulled off a pretty darn good one.  And things were starting to fall into place…

HOWEVER, THERE’S STILL SO MUCH TO DO with all this Healthcare Change stuff.  Gotta find out how to get my MS Medication (might I add that the Company who handles my MS Medication and the woman assigned to work with me to get it are absolutely WONDERFUL and I swear that woman is an Angel sent to help me–so sweet, so helpful, funny, knows more about my benefits than I do and so on) the right way although they’ve been sending it to me for no charge temporarily while it gets worked out–AMAZING!  I still need to change all my doctors over and let them know about my insurance situation.  I still need to change all my medications over to the new Prescription Plan.  It’s all new.  It’s all Change. 


THEN NEW YEAR’S CAME AND HAPPY NEW YEAR 2013!  WE MADE IT! I had a great time with a friend watching Corey on Stage after he had been up for a bazillion hours because it was a One Day Play.  The writers had worked on it overnight, the actors and director showed up in the morning and they had to perform a play twice that night at 8pm and 10pm.  It was a crazy, funny play that left us all wondering what really just happened but it was great to take in the New Year with a laugh.  A friend of mine came with me and it was nice not to go alone too. 


I woke up on January 2nd and my whole body felt inflamed.  It was like it was holding on for me as long as it could and when it felt safe, it let go.  I felt like I was on the verge of an MS Attack, a big Lupus Flare, and every symptom I ever felt ever was happening.  And if it didn’t happen that day it’s been making sure to still show itself today, January 8th.  I’m very fortunate to have a body that gives me lots of warning before it attacks.  If I listen to the warning and rest a lot than usually I can avoid any major action like being PUMPED WITH STEROIDS IN THE HOSPITAL FOR 3 DAYS TO TREAT AN MS ATTACK, or who knows what would happen with the LUPUS and how all that would happen.  I am grateful because not everyone with MS or lupus has that “luxury”…

During this past week I’ve been thinking I’ve wanted to FINALLY write my 150th Blog Post Finally and to get it out but it’s been locked in.  I think I’m pulling a bit into my cocoon to protect myself and because I’ve had enough.  I have to lessen the amount of activity I do and everything has really had to come to a halt or what I consider a STOP and RECOVER.  The RECOVERY to me is taking too long of course and the anger has come back up.  I keep thinking about what I “SHOULD BE” doing or what I “HAVE TO BE” doing and that gets me into trouble.

There’s still so much to handle with the Appeal and cleaning up the healthcare mess, and still having less money and with life, like laundry and grocery shopping and paperwork and managing Cleo’s health, and trying to have a life, and not being able to exercise as much and and and and and—I COULD GO ON FOREVER…




So now it’s time for OPERATION: NURTURE NAHLEEN.

What’s that you ask?  Well it really occurred to me yesterday that I’ve learned to LOVE myself quite a bit BUT I’m not nice about it.  I’m not COMPASSIONATE, NURTURING, GENTLE, UNDERSTANDING, CONSIDERATE OR EVEN RESPECTFUL about it.  I tend to be mean about it.  Sure I’ll do what I need to do for rest and I know this is the body I have and I’m learning to LOVE IT but what about LIKING IT.  IT’S ME.  It’s part of who I am.  If it were someone else going through all of this health stuff all the time I’d tell them to be nice to themselves and take it easy, to be gentle and get some rest.  HECK, even if they have sniffles I’m telling them to take care of themselves and I’m so loving about it.  DO I DO THAT WITH ME?!  NO.



It won’t be easy.  It was much easier yesterday than today.  I’ve wanted to rebel today.  But I’m determined to work on it and I know that with practice it will become easier.  That it’s not about perfection but about progress…

***And I really want to thank all of you who have supported me, talked to me, listened to me, loved me, hugged me, smiled at me, accepted me and been there for me this whole time.  No one should have to go through anything ALONE and I was never ALONE nor did I feel ALONE.  We are all in this together and I really felt ALL OF YOU holding me up and together.




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I write the title that way because December seemed to have pounced in LIKE CRAZY and just keeps going that way!!!

Decembers are always hard I think for most of us.  Not only is there usually some sort of Holiday we celebrate (Christmas here)  but then we end up getting thrown end of the month and year deadlines, new enrollment deadlines and choices, extra bills that come out of nowhere, and extra LIFE just KEEPS ON COMIN’!  And it’s NOT JUST BECAUSE OF THE HOLIDAYS!

Sure the Holidays have a tendency to drive me wacky.  It all gets magnified.  Ain’t that the truth.  I get what I call H-A-D or Holiday Affective Disorder.  It’s like a switch turned on the day after Thanksgiving (interesting that it wasn’t the week before–guess I’m making progress) in my brain and the CRAZY ANXIETY started about HOLIDAYS HOLIDAYS HOLIDAYS and this has to be done and that has to be done and and and…SOUND FAMILIAR TO ANY OF YOU?

So I had to really work on BREATHING (Tends to help.  I mean who knew right?), meditating, keeping perspective, talking it out, staying in the moment, one day at a time and all that hoobilly doobilly stuff and it helped A LOT.


BY TERMINATING MY DISABILITY COVERAGE, THAT ALSO MEANT THAT MY HEALTHCARE COVERAGE CONNECTED WITH MY OLD EMPLOYER WAS ALSO TERMINATED BY THE END OF THE MONTH.  I found this all out the last week of November 2012.  I ended up calling the Director of the Benefits Office at my old employer and asked her about it.  At this point I was so enraged and furious I could hardly function.  She was very upset with this entity for giving no notice to me and to them because it would be a mess because they terminated my coverage and no one knew till later in the month and MY HEALTHCARE COVERAGE WOULD HAVE TO END BY THE LAST DAY OF THE MONTH…if I recall correctly I learned I lost HEALTHCARE COVERAGE 2 DAYS BEFORE IT WAS DONE.

NOT COOL.  WORDS CANNOT EXPRESS MY PANIC, MY FRUSTRATION, MY ANGER, MY FEAR, MY RAGE, and there were so many feelings that I just could not even express in words.  There are not enough words to describe feelings like this in the English language.

THERE IS A BLESSING HERE THAT I HAVE NOT MENTIONED.  I had been enrolled in Medicare (my Pride has a hard time with that since I’m 35 but now I know it’s an absolute BLESSING so I’m learning to accept it and fast) automatically by Social Security Disability and since they were covering me retroactively as of December 2010.  (Social Security Disability is starting to clean up the mess I was in with them.–thank goodness because that would’ve really hurt at that point).  After 2 years you’re automatically eligible for Medicare when you have Social Security Disability.  So there it was.  The TIMING WAS PERFECT.  On November 30th I LOST healthcare coverage with my old employer.  On December 1st I STARTED Medicare healthcare coverage.  CRAZY PERFECT TIMING…

HOWEVER THERE IS A REALLY BIG TWIST that has not been mentioned.  A couple months back the Director of Benefits at my old employer had told me to go ahead and keep Medicare as my Primary and that they would be my Secondary.  She also told me that I DID NOT have to sign up for Part D–Prescription Coverage–separate Plan with Medicare–because I could stay with the Prescription Plan Healthcare Coverage with my old employer Healthcare Plan.  SOOOOO, there I was on December 1st with Part A and Part B covered with Medicare and NO PRESCRIPTION HEALTHCARE COVERAGE….

SOOOOOOOOO UNCOOL to say the least of descriptive words possible…

It’s already hard to pay out of pocket for medications and we all know it gets expensive and fast and that’s even with coverage and co-pays.  However, my MS medications have ALWAYS BEEN AND SEEM TO CONTINUE TO BE RIDICULOUSLY EXPENSIVE (even after 10 years of diagnosis) and the one I’m on right now is still a bit harder to be on and requires a lot of extra attention from the Healthcare system because it’s still so new and Man is it EXPENSIVE!  BUT it has helped improve my MS health immensely so it is worth it.

And so I’ve been trying to pull myself back up after being pulled under by a bunch of entities that seem to be making an effort to make it as hard as possible to be DISABLED.  UM…PSSSSST…IT’S ALREADY FRIGGIN’ HARD TO BE DISABLED.









I’m just me trying to be me and live my life the best way possible.  I’d also like a chance to RECOVER which is really hard to do when not given a break unless I give myself one.

That’s the thing.  I’ve had to schedule time to take more breaks, to try to have a social life, to get domestic life taken care of, to take care of our dearest Cleo Kitty who is doing so well (now that she’s been UN-DIAGNOSED WITH CANCER–MIRACLES DO HAPPEN!), to try to be creative, to try to participate in life-y things, to try to be doing anything I can to keep a smile on my face for the Holidays without forcing it all and pushing through it, to exercise and keep on walking (and I’m getting to 250 days in a row very shortly), to spend time with my husband, to breathe, to live, to have fun, to JUST BE…while LIVING THE LIFE AS SOMEONE WITH DISABILITIES who has to be as PROACTIVE as possible at all times with self care which also includes my eating better things for the Nahleen Diet, getting fresh air, being outside, brushing my teeth, taking a shower (still too much of an event), following up with doctor appointments, addressing colds and other infections immediately, taking care of this newly diagnosed IBS (I do believe we might be getting somewhere but medical tests are being done and those too take time), writing, trying to get more sleep and rest, WHATEVER IT TAKES FOR ME AT THE TIME.  Oh and the symptoms are still coming and going and I have my hard days and not so hard days.  Fatigue is still one of my main issues.  It’s not like they’ve gone away just because this ENTITY has decided THAT I CAN WORK…(Don’t get me wrong.  I’d LOVE TO WORK–who knew I’d say that.  IT WOULD BE A LOT EASIER THAN GOING THROUGH THIS DIFFICULT PERSONAL JOURNEY…)

My life is big–no it’s HUGE lately BUT I’m getting through it with lots of help, love and support that I’m learning to give myself more, from my friends, my family, so many loving people I know in spiritual groups who hold me up, social media, some people I’m getting know at the Pharmacy (sad but true), my awesome husband, my Cleo Kitty and you know what–it’s OK right now.  In fact, I let myself sit with that big blow when it first hit and tried to PROCESS THE TIDAL WAVE OF THE HUGE BLACK BLOW THAT NOT ONLY HIT ME FROM ABOVE BUT THEN TOOK THE WORLD I THOUGHT I WAS STANDING ON RIGHT OUT FROM UNDER ME…

The sitting helped.  THEN IT WAS TIME FOR MY OPERATION NAHLEEN HAIR RE’DO which is much shorter and purple and I LOVE IT.  It is THE NAHLEEN ‘DO!  That helped rebuild me A LOT. I had felt so depleted of everything.  I really had hit a bottom and was floundering.  They say you’ll always get more rope if you feel like you’re at the end and well, if there was any, it was frayed and withered away and may have broken had I grabbed it.

And as TIME HAS PASSED I’m picking myself back up with the help of the Holidays ACTUALLY (sure they’re stressful but I’ve learned over the years to just go with it and whatever happens happens–of course I haven’t felt this way EVERY DAY but I’m trying).  I baked 1st PRIZE WINNING COOKIES for a Cookie Swap Party last weekend that are my tradition to make every year and I think have been for 25 years or so and I still can’t believe I won.  That I even felt up to making them, going to the party, staying and then that I won was so awesome!  Really meant a lot to me in so many ways.  I was IN IT.  It felt so good to be creative and use my hands.

This week I dealt with a TRUE ANGEL (fully believe this) at the MS Medication Company Patient Program who helped me so much.  She stayed calm and knew exactly what she was doing.  I was so worried about how to get my medication without any insurance right now and she made sure I had enough for at least the next month.  She was the one following up with me.  Amazing professional ethics, consideration and respect.  I am truly grateful for her.  It was hard enough to start paying out of pocket for the other medications I need this month.  BUT it is all being recorded for the future.  I am working on RESEARCHING (HOLY CRAP IT IS SO COMPLICATED AND THEY MAKE IT SOOOO HARD TO GET A REALLY GOOD MEDICATION WITH MEDICARE–THEY REALLY DON’T WANT US TO BE ON MEDICATION NOW DO THEY?) this Part D Prescription Plan stuff and I have to take it slowly because it’s stressful and exhausting to look at and I need to know what I’m dealing with.  I was given NO LEAD TIME TO FIND THIS STUFF OUT.  INFURIATING.

I was also given a probably potential silver lining with my husband’s healthcare plan at work on Friday.  I thought it would be too expensive to do and got all confused about how it all worked and then he called me last minute and we went over it piece by piece to see if it would be worth it for me to be on his plan and I BELIEVE IT ABSOLUTELY IS and I ALSO BELIEVE I’M OFFICIALLY GOING TO HAVE A SECONDARY HEALTHCARE PLAN NOW which also probably means (with a little more research) THAT I DON’T HAVE TO DEAL WITH PART D-PRESCRIPTION COVERAGE WITH MEDICARE which is a TOTALLY AWESOME thing because my goodness the HEADACHE.

AND YES.  I WILL APPEAL THE DECISION THIS PRIVATE LONG TERM DISABILITY PLAN MADE ABOUT TERMINATING MY COVERAGE.  That is coming.  I am very resentful that this must happen but I need to fight not only for me but for others out there who don’t have the support I have and well THEY JUST CAN’T DO IT (I have those days quite a bit but I am too stubborn to let them win this one.)  I have a bit more to pull everything else together with my healthcare coverage and THEN LET THE APPEAL GAMES BEGIN.–As if I really wanted to do more work with ANOTHER APPEAL.  AND AS IF THEY ARE GAMES…

SO TIRING AND DRAINING.  So tired of talking about how awful my health is and trying to prove it yet not being able to really celebrate the improvements that have occurred is so sad.  Sometimes I feel like I have to be at least 2 people…





**Anyway, I wanted to make sure to write and let you know that you are all on my minds all the time.  I look forward to less busy times ahead (hmmm…will it be so?) without end of the year stuff and the holidays so that I can back into writing more regularly.  Just writing this Post has helped me so much.  I was going to post a quick note to say hi and stuff and then it all came out.  Thanks so much for reading.  By the way, it seems I have New Followers.  WELCOME.  What a year it has been with this Blog.  *March 2013 will be my 1 YEAR ANNIVERSARY OF WRITING THIS BLOG.* I am so happy and honored to have you all here on my journey with me.   And I so hope you are all doing okay.  I know it has been a rough year for a lot of us and I wish you all the best.  Please feel free to spread the word about my Blog, comment on my Posts, visit me on my Facebook Page that is supposed to be a supplement for this Page called “” at, also on my Public Timeline at, and on Twitter at!

Please whatever you do or don’t celebrate, I hope you have a wonderful end of the year if I don’t check in before then and may 2013 bring us all more peace in as many forms as possible!!!!

Much love!!!!!!–Nahleen

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Sicky Icky

Yep. I guess I don’t feel yucky enough and now I’m sick.

Not terrible sick. Been dealing with laryngitis since last Sunday and every time I think it’s cleared up it comes back. My Pulmonologist (yes I have one of those too) had told me awhile back to do a gargle with salt water and honey and it really helps a lot. BUT it wasn’t the answer to the issue. It just sorta soothed things.

So today I woke up and I felt OK. And then I started to feel really heavy and it felt like my body was crashing. It’s been a pretty intense week. I thought it was probably my body catching up with me. So I went back to bed to get some more sleep. When I woke up later I felt worse. You know, you go back to bed to try to get some more sleep to try to feel better right? Ha! This was one of those sucky times of waking up feeling worse.

This time I felt an overall feeling of yuck–I’ve since learned it’s malaise but what kind of word is that? It’s yuck. It’s bleh. Sick. My laryngitis had gotten lots worse and I felt heavy and gross. Then a bit of a cough started. I’ve learned a long time ago to address my cough immediately if I even get a slight hint of one starting. I can’t play the game and wait to see what happens. I KNOW WHAT HAPPENS…

And NOW my doctors all agree that I need to not only address it on my own (go figure) BUT I need to call them right away so they can help me take care of things. Amazing really that I have doctors that pay attention to this and are proactive. They DON’T want me getting sick–so sick that I can’t function even more. I have a tendency to go from slightly sick to HORRIBLE.

Soooo, even though I kept thinking in my head I could tough it out and do it on my own (been working out really great since Sunday as the no voice nonsense started), I dialed my doctor and found myself talking to someone on the other end right away.

And after waiting for hours for a response I did get a call back and ANTIBIOTICS it is. Good times. These have messed up my digestive system in the past so we’ll see what happens. My doctor told the nurse to tell me (don’t remember the exact words of course), “This is the deal. I understand she has stomach issues and she has a concern but we need to take care of this infection now. She can’t afford to get worse with her immune system the way it is. Tell her to take the Z-Pack and then call us and tell us how she’s doing. Tell her to promise she will. We know she has a tendency toward infections and it’s been awhile and we don’t need to be on a cycle of never ending infection if we can help it. But she has to PROMISE she’ll call me.” And she made me promise and I did like a good girl.

I really don’t need to be more sick. I addressed this early I think so hopefully it nips it in the bud. I decided I didn’t need to be coughing up a lung this time and to be completely miserable. But I’m sicky icky. I’m so tired of not feeling good. I’m so tired of all of this.

Yet somehow living in the solution helps a lot.

So I should probably go start the meds. Here I go. Wish me luck!!!

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Victory: 2 Weeks Without Doctor Appointments!


That’s kinda what it feels like.  The only other time in the past 2 years that I have gone 2 weeks in a row without doctor appointments, I was on a trip/vacation back east to visit family and friends and I was still DOING something.  This is 2 WHOLE WEEKS WITHOUT A SINGLE DOCTOR APPOINTMENT OF ANY KIND!

Not kidding.  I think there have been a total of 4 weeks during this 2 year period when I didn’t have an appointment and these weeks were not in a row.  They were scheduled free single weeks here and there.  I had to make it a point not to have an appointment and to schedule it that way.


Yeah that’s what the 2 years have been since right before my lupus diagnosis.  I’m grateful to have such wonderfully proactive doctors (including a Primary, numerous specialists and those in eastern medicine) because they have REALLY REALLY helped me get better.  They have been on me and I have been on them.  We have worked as a team.  We have done the work.  And there’s still more work to do.  The best part–it is working.


I’m free!  I scheduled it that way of course.  And to be honest, I really don’t know what to do with myself.  I feel like there’s something I HAVE TO BE DOING.  I don’t know how to just BE.  It was my idea (ha ha ha–me and my fantasies) that I would still be on “IT” all and get a bunch of stuff taken care of.  There’s been a lot of medical business that has been left hanging.  There’s been a lot that’s had to be put aside so I could focus on these doctor appointments.  There are things in my personal life to take care of and do.  There’s a bunch of people I want to be in contact with–you know, friends and people I actually LIKE talking to.

AND YET…of course that’s not really happening according to MY PLAN.

It’s like my mind crashed when I finally realized I was a bit more free.  It couldn’t “DO” anything else.  It couldn’t handle making a call to order a new prescription for a medication and I dragged myself the entire way (this is usually one of the easier procedures for me).  IT WANTED NOTHING TO DO WITH ANYTHING EVEN REMOTELY RELATED TO DOCTORS.

SOOOO…things are a bit different than I’ve anticipated.  Go figure.

I’m recovering from my 2 years of very active recovery mode.  I’m sleeping more.  That’s a MIRACLE.  Trying to give myself credit for that.  I’m resting more and even RELAXING at times.  I’m learning how to take care of me.  I’m learning how to be with just me.  I’m learning to ACCEPT me (why is that so hard?).  I’m learning how to not have anything that ABSOLUTELY NEEDS TO BE DONE.  I’m committing to things like a daily guided imagery for sleep, eating salads every day, walking every day, resting more, adding more creative activities (this Blog for one), being gentle with me, etc.  That’s A LOT of work and it takes up a lot of time.

I’m back to the old doctor grind in July but for now, IN JUNE, I will do my best to stay in the moment and be present to my world free of doctors.  It’s really very lovely and peaceful.  The word NURTURING comes to mind.


I could get used to this…



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Moments of Peace Part 5

Hello!!!  Wow I am so thrilled it’s Friday.  I can’t wait for the weekend!  Welcome to all of my new followers!  I’m so excited you’ve joined me on my journey.  You are all awesome!


Monday–Try to catch up with myself and with all the medical business that I didn’t get to take care of the week before (when I had 4 doctor appointments).  That included writing notes from my doctor appointments, updated my doctor list, updating my medication lists, etc.  It kinda felt neverending.

Tuesday–Had an appointment with my Primary Care Doctor.  He’s an interesting guy.  He kinda bugs me but he does try.  He was unhappy with the state of my blood pressure–I tend to go high–and tried to add another medication to help bring it down.

Wednesday–Had an appointment with me to take care of me.  It still feels like business in some ways when I do this and not exactly relaxing.  I try to schedule in more rest and do a special muscle soak bath.  Tried that new blood pressure medication.

Thursday–Woke up FEELING AWFUL and I was almost sure it was the new blood pressure medication.  Stopped taking it.  Spent the day recovering.  One little pill can feel so poisonous.

Friday–Hey that’s today.  STILL recovering from taking that awful pill on Wednesday.  My body continues to try to purge it out of its system.  Thankfully I am feeling better than yesterday.  Trying to be patient and gentle with myself.

Due to the roller coaster stress of the week I have definitely needed my Moments of Peace.  I can’t wait to share them with you:

05/04/12 My view from the sun deck as day turns to night.  The sky kept glowing.

05/04/12 My view from the sun deck as day turns to night.  Quite a big moon there and it is as if the moon is giving off wispy waves of clouds.

05/05/12 My view from Westside Pavilion in West LA as evening begins. We went to see Avengers that night and I had to get the picture from where I was. Loved Avengers by the way and highly recommend seeing it if you haven’t already. So much fun!  And…it was so nice to get out!

05/06/12 My view from the sun deck as day turns to night. Loving the moody sky.

05/07/12 My view from the sun deck as day turns to night. There is something about the sun peaking through the palm tree that I love love love!

05/07/12 My view from the sun deck as day turns to night. The sun is so powerful here.

05/08/12 My view on my walk in Pacific Palisades. I didn’t know at the time that the red/hot pink color would actually show up in the picture. Such a nice gift.

05/08/12 My view on my walk in Pacific Palisades. All I can say is WOW!

05/09/12 My view from the sun deck as day turns to night. The glowing sun.

05/09/12 My view from the sun deck as day turns to night. This time I was peaking around the corner at the sun.

05/10/12 My view from the sun deck as day turns to night. I love me some clouds.

05/10/12 My view from the sun deck as day turns to night. The sky often reflects what I’m feeling when I look at it. This was my worst feeling day this week. I think the picture speaks for itself.

And that was my week.  How was yours?  Have a shnazzy weekend!


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Not a Happy Nahleen This Morning

I am so not a happy Nahleen this morning. I feel awful. I tried a new blood pressure medication yesterday–ONLY ONE PILL–I will NOT be taking that again.

I feel weak, depleted, achy, stiff, my body temperatures are going hot and cold, and I really feel like I’m getting the life sucked out of me. I’m trudging through muck and I feel like my hands are stuck to a stringy glue-like substance and I’m starting to lose touch with me.

I’m so frustrated and powerless. I had plans for a Physical Therapy appointment and I also had a commitment to fulfill for tonight. Both of these plans will now have to be cancelled for today…because of my body’s reaction to ONE PILL of a line of blood pressure medications that I previously struggled with six years ago. So I got to wake up off and on all night with my body feeling so “weird” and was given a chance to reminisce about those horrible days of trying crappy medications to take care of an issue that had nothing to do with my chronic illnesses. I think what was happening back then was that my multiple sclerosis and lupus (didn’t know I had lupus at the time) were feeling very overwhelmed by any new medication because I was taking a very strong injectable medication for my MS and they were especially unhappy with BP medications so my body went into purge mode. I remember all too well that I was starting to feel lifeless, like the medications were sucking the life out of me.

I have been currently taking a blood pressure medication that has actually worked out but my doctor insisted on raising the dosage by adding another medication and instantly my mind went into RED ALERT. I figured that I’d be okay this time because both my MS and lupus are being treated and I’m no longer on the injectable medication. WRONG. Turns out my body rejects diuretics altogether. No more. All done. I tried it for one day. My body hates it, doesn’t want it and it is all done.

I agree. I hate it, I don’t want it and I’m all done with it too. I will be calling my doctor today to let him know I’m not taking it. It has been a long time since I woke up feeling this physically crappy. Turns out I like my body much more without this new poison. Hey, at least it helps me have perspective that I don’t need to feel this crappy (and I haven’t FOR A LONG TIME NOW I GUESS) and that I want my previous body back–you know, the one from over 24 hours ago that hadn’t taken this stupid medication yet.

So today I will be resting, drinking lots of water, hoping my body can rebuild and repair itself and will do my best to have patience. It’s time to be gentle with me and to remember that I’m not the same person I was mentally or physically six years ago and I can get through this one thing at a time.

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