Posts Tagged With: antibiotics

“Should” Is a Dangerous Word

I don’t know about you but I have a lot of chatter going on in my head quite often. I’ve learned and been able to quiet it down a bit more but it’s amazing how loud it can get in there. My goodness. The things I say to myself. I used to be really mean to me and abusive and I realized that I didn’t like those bruises anymore, that I didn’t deserve them, so I have gotten in the practice of TRYING to take words and phrases out of my head that do me more harm than good.

“SHOULD.”

That word needs to be considered what is called a “bad” word. How often do I find myself “Should be” with the “Should be” because “Should be” is “Should be” and back and forth. It’s awful really. I set myself up on this pedestal and the expectations start. I expect more of myself than others expect of me. For goodness sakes. I mean I have multiple sclerosis and lupus and if I count what’s been happening the past few days, I’m also dealing with a sinus infection and have been sick from that.

ISN’T THAT ENOUGH?

Why does “should” even come into my Being. Why do I even let it in? I try so hard to take it out of my vocabulary. In fact, even writing this, I find myself wanting to write the word “should” in a sentence over and over again. But it always gets me into trouble.

If I act on the “Should Be”s then I am only going to get tense and stressed out if and when I can’t follow through. This became very clear to me again this evening when after a long day of crunching numbers, some rest, taking medications, taking care of my sickies, taking care of my Cleo Kitty, taking a lovely walk in the fresh cool air as the sun set, spending time with Corey and just living my life I found myself playing the “Should be” game.

ONLY IT ISN’T A GAME.

It’s always more serious and it is never fun. It says I’m not enough. It says that I’m not doing enough. I’m not good enough.

Well I have news for me.

THAT’S NOT TRUE. I AM ENOUGH.

SO NO MORE “SHOULD”.

And when I say it again to myself I gotta try not to be too hard myself about it and just try to stop myself and either reword it, trust that all is as it should be and/or tell those words in my head to go away. That they are no longer welcome.

As I said before, I’m getting better at it, at keeping the “Should”s away but it is very hard.

Since I didn’t act much on the “Should be”s today I am relieved to say that I am a bit better from the sickies. I’m also feeling a bit loopy and strange from the antibiotics and the mucinex but I’m not feeling sicker and more miserable so that is a plus.

Progress is a good thing.

I think I’ll write to the people who write the updated dictionary every year or however often they update it and tell them to take the word “should” out. What I do know is that in the Book of Nahleenisms, “should” is not included. In fact, the word no longer exists…

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Sinus Infection and Hope

Sinus Infection.

Infection.

Infection.

That’s what I feel like I’ve heard over and over again over the past few years especially. Perhaps I don’t hear it as much as I used to but for awhile I think I was just one big walking infection of one kind or another.

And today was no exception. The only difference is, I haven’t been to see a doctor about an infection for 8 months. I think I’ve hit a new record. If I’ve felt sickies coming they have been fought off by my own body and Chiropractic adjustments have helped a lot too.

So I called my doctor’s office this morning at 9am when they opened and couldn’t reach anyone till 9:30am. Turns out their phones were ringing off the hook for at least a half hour straight with people calling like crazy trying to get squeezed in for an appointment because so many people had the same symptoms I have had. They have had the puffy swollen face, the cough starting, the sinuses filling up, the fever, the feeling of the head being squeezed off, sneezing, etc. And I found out later from my Physician Assistant that most of these infections have started with allergies and become an infection. She also said that most of her patients have said it has hit hard and fast and feel like they’ve been hit by a bus. Well, yes, I kinda have felt like my head was hit by a bus actually.

Yes. Ugh. Ow. All that stuff.

I was miserable today. I’ve been in a funk and not feeling good as you all know by now. I tend to get really upset when I get sick because I feel as though I am sick enough with MS and lupus. I really don’t have anymore room for any other yucky symptoms and discomfort you know? I really don’t want to be sick anymore. I would love to get a break. I was just icky mentally and physically.

Yet as I drove to my appointment this afternoon I took a deep (as deep as I can when I have a tight chest congestion issue) breath and looked to my left at the ocean. I love this drive. I love the area I get to drive in to get to this doctor’s office. I love the area itself where it’s located. To be honest, it’s one of the main reasons I go to this doctor.

Anyway, I looked at the ocean and its sparkles and then looked to my right to the cliffs that so clearly mark PCH (Pacific Coast Highway) and I think it’s then that I found myself more in the Present again. It’s hard to stay Present when I don’t feel good. My head goes all over the place into the future, the past, backwards, inside out, sideways, and usually feels buried under bricks of ick. It was the ocean and the sunlight’s shadow play on the cliffs that struck me. There I was sitting in my car and feeling stronger than I have in awhile. I sat a bit more upright. I started feeling inside the rest of my body and realizing that this may be the first time I wasn’t completely overtaken by so many symptoms from all my ailments that I didn’t know what was bothering me. I just knew it all sucked. And I realized, I AM improving. I am feeling a bit stronger. This time I’m really going to the doctor to address the sickies. I don’t need to address all the MS, lupus, IBS and all the other symptoms that are completely overwhelming me. And for the first time in about 2 days I started to feel a bit more hope and positivity. That I’d make it past this.

I always find myself in this trap in my head. As if I’m never gonna get through the next wave of whatever is making me feel crappy. It feels permanent. Like I’m doomed. Quite often, though, the horrible wave passes and I pull out of that and go to the “normal wave” of discomfort.

But it was the ocean, the cliffs and sunlight that pulled me out just a bit. They gave me something to hold onto. And then as I talked to my PA at the appointment she helped me remember the progress I’m making and how far I’ve come compared to 3.5 years ago. She has always been there for me. She has coached me and encouraged me and also been able to take me seriously and with so much compassion. She reminded me that we are all human. That as humans we get sick. This is almost a normal thing to go through, this sinus infection. This is gonna happen. But she also acknowledged that yes it would be really nice if I could get a break. She knows how much I’ve been through.

So I’m now stocked up with antibiotics, mucinex, juices, water, tissues and anything else that will help me get better. I fought off this infection for 2 weeks on my own. THAT is a victory. This all still sucks but if I can pull my head out of the muck I can see where the hope is.

And as I’ve read before and I just love this quote:

HOPE: Hold On Pain Ends

It’s hope that keeps me going. So I will hold on.

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CAMBRIA HERE WE COME!

YIPPEEEE!!!!

Heading to Cambria today at some point when we can pull ourselves together! We have reservations at a spa/hotel/resort in a room that has a king size bed, jacuzzi style tub with spa jets, a fireplace, a pillow top bed, a spa to get massages and facials, supposed live entertainment on Saturday nights, a luxury continental breakfast in the mornings, a walkway that connects to a boardwalk that leads through a State Park straight to the ocean and the list goes on and on! I can’t wait!

Yesterday was the kind of day that went really well in the beginning and it all flowed really well and then about halfway through after making a business call it sank and it sank fast. I don’t want to get into it but this trip has come at the PERFECT TIME!

Not only is Cleo Kitty doing quite well (and we have a lovely lady coming to watch and stay with her who has bonded with her in the past which I tell you is a VERY RARE THING if you’re not Corey or myself), I am feeling much much better from taking care of myself and going to the doctor and taking antibiotics that IMMEDIATELY kicked that infection’s buttinsky and from the storms happening last night that ACTUALLY INCLUDED ONE HUGE BRIGHT FLASH OF LIGHTNING AND THEN A HUGE CRAZY CRACK OF THUNDER RIGHT OVERHEAD (which is VERY RARE AND EXCITING IN LA) so that helped me get some physical relief, I’m actually feeling up to taking a road trip (WHOA! LOOK AT ME GO!–haven’t been able to plan a road trip or trust that I could do one longer than 2 hours and that was pushing it…for AGES it feels like), I’m going with Corey and I can’t remember the last time we got away just the 2 of us to a place that wasn’t connected to anyone we knew (don’t get me wrong I love my peeps but we need some REAL TIME AWAY), and well IT IS JUST TIME.

So off we go at some point today. Part of this whole trip is the road trip. We will get there when we get there. I used to love road trips with Corey. We have the best time if we just go with it. I keep thinking we should be hurrying up and leaving now but then that’s not either of our styles to be honest and that would kick my already emotionally fragile lupus and MS butt that has made my physicality a bit fragile too today. So when it’s meant to be that we go, we go.

To be honest, after that phone call yesterday regarding YET ANOTHER BIG LIFE DECISION (HAVEN’T I MADE ENOUGH OF THOSE LATELY!? A GAL NEEDS A BREAK HERE AND THERE!), if I wasn’t already getting away and planning on running away anyway to try to relax and clear my head, I would’ve run away anyway. I have mentally had ENOUGH!

So enough of this writing chatter. Gotta get back to my self care so we can get the heck outta here.

THE ONLY DOWNSIDE?

… (sad face here) Leaving Cleo Kitty. I haven’t left her since the whole “cancer” episode (I say that because she is so resilient and awesome that she doesn’t seem to have cancer (really long story–but she does have some other serious health problems and sensitivities. Never did get a definitive diagnosis because she’s a kitty and didn’t need to be more traumatized than she already was for goodness sakes) and that was in December 2011. We are quite attached to each other and have been each other’s caretakers since then. So as much as I know it is for the best, it will still be hard. But we will be back Sunday night. And I have to remember that the fact that we can even leave her at this point is amazing. In November we had planned a similar trip to celebrate 15 years together and 6 years of marriage and had to cancel it because her health was so questionable and we couldn’t leave her. Now I look at her and it’s hard to believe that happened. She’s so in the mood to keep living and we finally got to the bottom of her health stuff too so that’s good.

Anyway, I keep babble-writing. Off I go!

Write soon!

Oh and to my new followers HI! Yay! Thanks for joining me on my crazy path. To my commenters–yay thank you for commenting! I plan on responding next week.

Have a great weekend y’all! I know I am not the only one going through this thing we call life and holy moly it can be hard and intense…

Love to all!

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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.

 

 

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Hope

I have hope.

And it’s in the forefront of my mind, not somewhere in the back being pushed aside by yuckiness.

It’s been a really hard week for me. I’ve been dealing with this small intestine bacterial infection and the antibiotics that are sent there to go to war with it. It’s so not fun when there is a war in my digestive system. Talk about feeling messed up!

And then for it to be hot, humid, have lupus and multiple sclerosis on top of it!

UGH!!!!!!–And that doesn’t even come close to explaining it.

So this morning I woke up with hope. I could feel that it had somehow made its way closer to the front of my mind again. I am feeling a bit better. I feel like I’ve turned that corner and can glimpse the “feeling better” part of it all.

The yuckiness has been coming in waves…so for the moment I’ll do my best to be content with where I am.

I’ll sit with my hope and see what happens.

Thank you all for being there. It helps a lot.

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Moments of Peace Part 15

Well it has been quite an intense week.  I wasn’t sure I’d be able to write this post today because I’m currently sick with some sort of infection that includes laryngitis and since I’ve started antibiotics last night I’ve been feeling better.  To be honest, that is AMAZING!  I’m not exaggerating.  I can’t remember any time I’ve been sick that I’ve taken antibiotics and felt better the morning after starting them the night before.  It was a good thing to catch this really early.  My body can’t afford to get HORRIBLY SICK.  Fortunately, I have doctors who agree and push that on me.  So here’s hoping I can get back on my feet again soon.

On another note before I get on with my Moments of Peace, I’ve been getting inquiries from people reading my Blog asking if they can recommend my Blog to others.  YES PLEASE!  That would be great.  One of my goals is to connect with others.  The more the better.  We can all help each other.

And now for my Moments of Peace:

08/10/12 My view in West LA in the afternoon. It was so dang hot that day. I think the intensity of the sunlight really shows it. Something about how green these tree leaves are struck me. It’s not like we get rain here but it sure is more humid than it used to be.

08/10/12 My view in Culver City, CA in the afternoon. And the heat continued. LOVE the bold color!!! Caught my eye right away.

08/10/12 A lovely view of my Cleo Kitty and I. She loves to cuddle with me on the couch in this position. Love her so much!

08/10/12 My view from my balcony as day turns to night. The evening skies have really been catching my eye this week no matter where I am. Summer skies are gorgeous!

08/10/12 My view from my balcony as day turns to night. I’m always in awe of how the sun reflects on the clouds–notice the edges here.

08/11/12 My view from the sun deck as day turns to night. Summer sun setting with little white wispy clouds.

08/12/12 My view from the sun deck as day turns to night. All kinds of clouds happening at once up there.

08/13/12 My view from my doctor’s office in Santa Monica, CA today. It was another really hot day with mega intense sun. Everything is so bright. Loving the view on the horizon.

08/13/12 My view on my walk in Santa Monica, CA. Hello bright sun!

08/13/12 My view on my walk in Santa Monica, CA. These were a pretty color and so calming. Anyone know what they are?

08/14/12 My view from the sun deck as day turns to night. You can’t really see it here but there were levels of color that were fascinating me. The color right near the horizon was purple.

08/15/12 My view from my balcony as morning arrives. I was breath taken by all the sights in the sky. The sunrises this week have been beautiful.

08/15/12 My view from the sun deck in the afternoon. There was an artist in the sky that day. I could see so many images in those clouds. What can you see? And look at that blue!!!

08/15/12 My view from the sun deck in the afternoon. There’s even more artistry in another part of the same sky. Loved how these clouds fell into place here.

08/15/12 My view from my balcony as day turns to night. The show just kept going from my balcony. I had to catch these moments.

08/15/12 My view from my balcony as day turns to night. ‘Twas quite a remarkable sky all day. And thus the pinks started showing up. I couldn’t stop gawking at it.

08/15/12 My view from my balcony as day turns to night. The pink flames started.

08/15/12 My view from my balcony as day turns to night. These pictures don’t do this sunset justice but I think you get the idea.

08/16/12 My view from my balcony as morning arrives. Billowy clouds…more pretty.

08/16/12 My view in West LA as day turns to night. So white and so blue. I was walking next door to pick up my antibiotics for my sickies and saw this. Helped me to relax a bit. (And yes, I’m very lucky to have my pharmacy right next door.)

08/16/12 Thought I might’ve heard some grand declaration of music in this one with the way the sun’s rays are declaring themselves through the clouds! Loved it!

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