Posts Tagged With: life

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.

Advertisements
Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

LIFE: ALWAYS IN SESSION (A BLOG POST NOVEL BY NAHLEEN BLAKE)

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!

ANYWAY…

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. 

But the point is: LIFE IS ALWAYS IN SESSION–DANG IT!

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?

ACK!

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. 

AND MY HEAD JUMPS IN RIGHT NOW AND ASKS:  WHAT?  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.

SO WHAT AM I GETTING AT HERE?

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. 

I FREAKED OUT!

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…

YES, YES THERE IS…

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…

BUT THEN I HAD NO HEALTHCARE COVERAGE BUT MEDICARE…

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 I’M COVERED BY TWO DIFFERENT PLANS RIGHT NOW: COREY’S HEALTHCARE PLAN AND MEDICARE.  Can’t have asked for better coverage at this point.

BUT BOY WAS THE PROCESS ALL HELL.

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. 

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. 

MY BODY HUNG ON UNTIL JANUARY 2ND, 2013 and then CRASHED.

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…

BECAUSE: LIFE IS IN SESSION.  IT IS ALWAYS IN SESSION. 

BUT I WANT TO END ON A POSITIVE NOTE:  DESPITE EVERYTHING THAT HAS BEEN GOING ON, I HAVE TAKEN A WALK FOR OVER 250 DAYS AND I KEEP ON WALKING…

GO ME!  GO ME!  GO ME!

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.

SO NOW I WILL FINALLY STOP WRITING AND GET BACK TO:

OPERATION: NURTURE NAHLEEN

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.

THANK YOU.

 

 

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

Nahleen’s THANKITUDES!

THANKITUDES you ask?

Are you thankful and grateful?  Are you having a hard time choosing between one?  Do they come with “att-itudes” sometimes too?

SURE!

Let’s take a look at Nahleen’s Book of Nahleenism’s and oh look at that!  She’s just added a new word to her language: THANKITUDEFUL.  Definition: Feeling thankful, grateful, adding the attitude where necessary (or not–your choice).  Also can be written as THANKITUDES…

Quite often these days I find myself feeling thankful, grateful and full of attitude.  Sometimes I find myself feeling just one of those.  Is there a difference between thankful and grateful?  Hard to know really.  I think it depends on the day, who I am that day (I change a lot during the day don’t you?), what’s happening, how I’m feeling and whatever else affects my feelings.

So in light of the upcoming US Thanksgiving Holiday tomorrow, Thursday November 22, 2012, I wanted to share my festive version.

NAHLEEN’S THANKITUDES  (I spent too long trying to figure out if this was a one time only thing or if this could continue and well who cares right now?–I soon found myself not thankful or grateful and FULL OF ATTITUDE because of my own silliness soooo…)–without further ado:

 

AHEM…Let’s try again….no need to make it bold.  Perhaps I put too much pressure on myself…

 

NAHLEEN’S THANKITUDES:

1. I’m THANKITUDEFUL for ME.  Truly amazing to be feeling this way about myself.  This is a work in progress.  Quite often I wonder why I had to be born with such a messed up immune system and why my body had to be so sensitive…why it had to be full of what I conceive as inconveniences and the like.  I can’t stand that I have multiple sclerosis, lupus, probable IBS, food sensitivities like crazy, environmental sensitivities, sometimes asthma and I’m sure the list goes on and on.  And then there’s my crazy mind that beats me up, goes wacky like The Looney Tunes Tasmanian Devil, is meaner to me than anyone else would be and sometimes abuses me.  Then again, I am so much more compassionate towards myself and realize that self care is a wonderful thing.  It helps me to stop, look, listen, pay attention.  These illnesses help me connect more and more with people, with nature and its amazing beauty, meditate and quiet my head, stay more in the moment, and learn who I really am and how to love me for me.  Honestly, I am finally LEARNING HOW TO LIVE MY LIFE.  It sucks that I had to/and still have to go through all of this to get there but I finally am understanding that it’s THANKITUDEFUL that I am for ME.  I’m all I have.  I don’t get to run away and no one else seems to run away from me so there must be some good qualities somewhere.

2. I’m THANKITUDEFUL for my husband, companion, best friend, partner in crime, silly, giggle-making, talented, supportive, compassionate and BIG TIME BRATTY PANTS, Corey Blake.  If you don’t know this guy, you’re missing out.  Standing almost 6 feet tall you’d think that if you’re short like me, you’d have to look up to him and would NEVER be on his level.  This is so not true.  This guy talks to all he encounters as if he is equal with them.  He has the most compassionate heart I know and he is obsessed (in a good way or at least I like to think that I tame that back as if I control him-ha!) with KITTIES!  If he had his way, he’d fill his life with so many kitties he wouldn’t be able to find himself.  He wants to be a kitty for goodness sakes.  As you can guess, our Cleo Kitty is in very good hands.  He is also incredibly funny and talented on the stage and if you haven’t seen him do his thang on the stage or in front of the camera than you are truly missing out on a miracle in action.  He absolutely lights up the stage.  He is my inspiration for getting out there and just doing it.  I myself can’t believe he would stay with me with all that goes on with me with my health but he has been there from THE BEGINNING.  We had only been dating for 2 weeks and my best friend kitty (my sister growing up) passed away and he was there while I grieved.  Only 3 months later my dearest bestest Nana in the entire world who I adored more than I can even describe passed away AND he was there…the ENTIRE WEEK AFTER.  We traveled across the country together to pursue our dreams in Los Angeles, CA from New Hampshire and Massachusetts.  We built our lives here and have just celebrated not only 15 years together as a couple, but 6 years married, 12 years with our dearest Cleo Kitty daughter and 13 years here in LA!  He was with me when I was diagnosed with MS almost exactly 10 years ago.  He was with me when I was diagnosed with lupus over 2 years ago.  And he stays.  He also proposed to me on Waikiki Beach at night at the edge of the ocean, with the moon glowing and the stars twinkling (just to give you an example)—so romantic.  We had the funnest wedding ever and kept it the way we wanted it with our own silly flare.  Thank goodness we laugh and keep it light.  Our conversations travel on the path of silliness, to snippy snappy (our version of fighting), to serious, to meaningful, to heartfelt, to honest, to feelings, back to me giggling so hard by something he said that I’m crying and can’t breathe.  Can you tell I love the guy?  Sure he drives me crazy (uh oh, he’s reading this and might be upset with me for saying this or worried) but that’s because we are the closest to each other and we need someone to drive us crazy.  Apparently none of us are perfect.  And I’m oh so sure I NEVER drive him crazy.  Nope.  Through our ups and downs and such great and amazing times, it is us.  We are a team and I am so THANKITUDEFUL for that.

3. I’m THANKITUDEFUL for my daughter kitty, my Cleo Kitty.  That little girl of mine (is not a little girl in kitty age that’s for sure) is so mature and wise.  She teaches me how to live in the moment.  How to take things as they come.  To stop and play and enjoy myself.  That life is about living in the moment.  She is my BEST KITTY FRIEND.  I adore her.  She was a stray who had clearly been domesticated at some point in her very young life when she was found and really just wanted to live inside and not have to deal with the crazy outside world anymore.  When we met her it was love at first site for both Corey and I BUT it was clearly love at first site between Corey and Cleo.  I was just the extra for a long time.  She’d put up with me in order to be with Corey.  She was smart.  She knew the deal.  Over the years we have built our own very special and connected relationship that warms my heart.  She is my best kitty friend, my health partner (she was diagnosed with cancer in December of last year–almost a year ago) and we take care of each other.  We take turns.  She really does watch over me and I try to do the same.  She understands A LOT of English and gets frustrated that we don’t understand Kitty Language but we’re definitely getting better at it.  She plays, she loves, she sleeps, she is our alarm clock, she looks for support in all areas when she’s not comfortable with something, she is our companion and we love her so.  She really has done well and we had only 2 close calls with her life in the past few months.  One was from trying a new medication but she pulled through in about 24 hours and the last was almost 2 weeks ago.  This one might have also been a medication reaction but in all fairness, she has cancer and a weaker body immune system and is very sensitive with digestive issues and with some breathing issues we’re still trying to narrow down.  I am truly THANKITUDEFUL to have her in my life still.  She’s decided she’s not done yet and we are doing our best to help her feel comfortable and happy and if anything she is still very happy.  Every moment more with her is a true blessing.

4. I’m THANKITUDEFUL for all living supporters on my path.  That includes you.  These living supporters are people (friends, family, people I connect with out in the world, Facebook people, online people, Twitter people, the people I small talk with all the time, my doctors, any people in any part of the medical world I continuously find myself in, anyone who helps me or who I can help), dogs, cats, plants, the earth and nature.  You name it.  I am serious.  Any living thing.  I believe we are all connected in some way.  That doesn’t mean we have to all love each other or even like each other.  However we are all here for each other.  We are all alive and giving feedback in some way.  And as a part of this, I LOVE PEOPLE.  I do.  PEOPLE ROCK!  Sure some of them are more likeable than others.  Some I may not even really want in my life BUT they are there for a reason.  We all have something to give.  We are all just us trying to be US.  That is it.  And yes at times we can all be jerks (yes, Nahleen’s ego–you too–I still don’t believe it), and truly unlikeable (of course Nahleen’s ego has no idea of what I’m talking about) but it’s true.  And so to get away from this silliness I just wrote, I look forward to more and more connecting.  It is what keeps me going.  I think connecting with people is one of my hobbies.  I am so THANKITUDEFUL for you all.

5. I’m THANKITUDEFUL for this Blog.  I feel like this is inconsequential since the other 4 items on this list are so personal and why would I just feel this way for a Blog?  Well, it helps me write which is something I believe I’ve been meant to do for a long time.  I just need to write.  Not sure what that means but this is my 141st Blog post so I guess that means something.  I had no idea my Blog would go this far.  I had no idea I’d have this much to write and oh so much more!  I had no idea that anyone would want to join me on my journey.  I didn’t think anyone would care (again, about my crazy mean mind sometimes as posted above).  I didn’t know that I’d even be silly and post about ’80s songs or post any pictures.  I just didn’t know.  Once I jumped in this time I was ready.  It was time.  Thank you for being there.  It is so cool for someone such as myself who has to spend so much time at home resting and taking care of myself in order to get through the day.  So much self care to do and most often this has been added to my list of things I NEED to do to survive.  Sometimes it’s taken off because I need to pace myself and just breathe.  It all really depends.  And you know what’s also so cool?  Hearing from you!  Getting comments on my posts has been one of the coolest aspects.  I just love it!  Thank you to so many of you for encouraging me along the way and even way before I could really commit to it.  You know who you are.  You rock!  I am so THANKITUDEFUL for this Blog of exploration, silliness and connection.  I can’t wait to see what the future holds for it!

 

So that’s that.  I think that’s enough for today.  I really needed to write this.  The nudge has been on me to write something like this for a few days now and maybe I can breathe a little easier knowing I got it out.

Thank you thank you thank you.

DO YOU HAVE ANY THANKITUDES you would like to share?  I’d love to read them!  I have a feeling we all would!

Take care all.  Will write soon I’m sure.

 

 

Categories: Uncategorized | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Create a free website or blog at WordPress.com.

%d bloggers like this: