Posts Tagged With: cancer

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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AND…I’M BACK!!!!

Yes I’m here!

Dang DSL is back up and running and apparently so am I!

There’s a lot of life going on here.  There’s the holidays, doctor appointments, taking care of me (full time job), more disability issues that seem never ending and insecurity there because one entity terminated my coverage which then cut off my healthcare coverage, but then I happened to go on Medicare (having pride issues about going on that at age 35 but at the same time so GRATEFUL to have the coverage) LITERALLY the next day after being cut off, yet at the same time there’s a whole Prescription Part D of the Medicare coverage that I had not enrolled in because I was told by my healthcare people not to worry about that since they would cover the Prescription part of my healthcare, but then that couldn’t happen because they had to cut me off due to the disability entity being connected to my work and they gave me no time to sign up for that part which I believe is illegal, so now I’m trying to find the time, energy and patience to sign up for a Prescription Plan and have to pay out of pocket for my medications until I do so and I HAVE NO IDEA HOW I’M GOING TO GET MY GILENYA MEDICATION FOR MS BECAUSE IT’S SO EXPENSIVE (that’s tomorrow’s priority call), I’m also trying to appeal all of this but before I do that I need to be able to even get through reading the horrible termination letter from this disability entity that is so upsetting for so many reasons, so I’ve been dealing with feelings and emotions, picking myself back up, getting a new hairdo that I plan on showing pictures of very soon, dealing with an undiagnosis of cancer for our dearest Cleo Kitty yet she still has a very sensitive immune system and we are trying to balance all those issues, along with my newly diagnosed IBS acting up because the treatment just isn’t cutting it, along with having multiple sclerosis and lupus, having a really neato husband who’s always there and supportive and trying to spend time with him while he’s making changes, trying to have a social life, doing my best to stay sane, be in touch with lots of people, trying to rest and recover and it goes on and on.

I made that a MEGA RUN-ON sentence because I think it helps to see just how OVERWHELMED I am and how big my life is.  Sure there are a lot of really great things going on but they are intense and I truly believe I’ve been on a spiritual journey for quite awhile that is really helping but a lot of work.  HOWEVER, there are some really seriously scary things going on with this current healthcare insecurity and financial insecurity and a lot of feelings of anger yet at the same time it’s the IBS that’s acting up and my MS and lupus have calmed down.  BUT I have to be careful of that because that could change at any time especially if I don’t do all the self-care I need to do and get enough rest.  And hence things get done when they get done and that’s how it is.  As a person who is a Type A personality at the core and has had to really unwind that over the years, it still hits me every time and I struggle with it trying to get myself to just calm down.

It’s hard to PRIORITIZE right now but I’m taking it moment by moment and breath by breath.  Day by day is the best I can do.  By the way, did you know that BREATHING and taking extra BREATHS helps???  I mean who knew?  I’m really finding out that I hold my breath way too much so I’m trying to work on that.

WOW!  I’m tired just from writing this.  My Cleo Kitty is calling me.  She beckons quite often these days.  Gotta love her.  She is quite a spirit.

I hope you are all well and that I can write more soon.  Take care and I hope you can remember to breathe during this time of the year too.  Turns out it’s quite important to do…

 

 

 

 

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Short and Sweet

Hi there. WHAT A WEEK!

We have had Internet issues all week so I’m typing this from my phone. I will elaborate later but here’s the gist:

1. Sinus infection: got really close to worse and almost started up my asthma so I was close to needing an inhaler again…more antibiotics but I think they’re helping.

2. It’s raining which means my lupus and MS are acting up.

3. Found out the hard way yesterday that the Private Long Term Disability company I’ve been with for 2 years has dropped my coverage. Very upsetting. Yes I will Appeal. HATE that I have to. This could also affect my healthcare coverage because it was all connected through my work.

4. Figured out I start Medicare health coverage this Saturday…not in 2 weeks so at least I’m covered there. However, the Prescription coverage is sticky right now. Still have lots more phone calls to make…NOT a happy camper about that.

5. And we have KITTY MIRACLE news! It’s a long year of a story but it is most likely that our dearest Cleo Kitty DOESN’T have cancer and has been dealing with a very sensitive immune system that has so many other issues. And right now she seems to be feeling better than she has in a long while which is even AWESOMER! Another story to elaborate on there too. I think Corey and I are still in shock about that. We found out last night!

And that’s enough for now. Hard to write anything on a phone but still so cool that it’s even possible…

Hope everyone is well and I will write more and respond to Comments when I can.

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Picking Up the Pieces

Oh my goodness. What a weekend it was! I am so relieved to get through it.

On Saturday, it was 104 degrees here in West Los Angeles, CA! Crazy ridiculousness! Thank goodness the AC was working. However, it was still hot in the apartment if you ask my MS and lupus. OH yes it was. Yet, at the same time, somehow I got out with Corey to run some errands. I needed to get away from the building. Like in a car get away. I hadn’t been in a car to go anywhere in over a week and my little visits to the sun deck and my walks around the block just weren’t cutting it. Nope. So for sanity’s sake I got out and it was good to do so even though my body was yelling at me.

On Sunday, it was a bit cooler but still too darn hot. And it was an awful day because our Cleo Kitty (who’s been doing quite well since her cancer diagnosis in December 2011) was very very sick and we really weren’t sure what was going on. We think it was a bad reaction to medication but we’re really not sure. It was one of the hardest days I’ve had in a really long time. And the GREAT news today (Monday) is that she’s doing much better and almost seems like herself again. She didn’t eat for 24 hours. Very scary…when she did finally eat a little bit it was so exciting!

Meanwhile, I’ve still been fighting this small intestine bacterial infection. So while it was so hot and then Cleo was sick, my stomach was churning at times. The good news is that the infection seems to be getting better and I’m functioning more in my life. Today I stopped taking 1 of the 2 antibiotics I was on to treat it so hopefully that helps a bit to clear my head. I tend to feel a bit woozy on them.

So needless to say, we’re trying to settle back into a norm here. Thankfully it isn’t AS HOT here and Cleo’s recovering. I feel so blessed and grateful that we are given the gift of more time with our little girl. She is truly very special and definitely a fighter.

And as much as I feel like I SHOULD BE hitting the ground running, there will be no such thing today. I have a few more things that need to be done, one errand to do which will help me get out and otherwise it’s resting with Cleo.

Gotta give myself room to pick up the pieces and recover in all areas. Most of it can wait.

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Well We Did It!

Cleo Kitty and I made it through 4 days without Corey!

On Friday afternoon, I dropped off Corey at LAX so he could fly back to be with his family for his nephew’s graduation.  It was a very bittersweet experience for me not to go and be a part of it.  I didn’t want to see him go because I kinda like having him around (you know–kinda) and yet I was so happy for him that he could go and participate in a family event and that Cleo and I were well enough to deal with life without him for a bit.

With Cleo Kitty’s cancer diagnosis in December 2011 and my dealing with lupus and multiple sclerosis, there is just no knowing what the right decision is for anything and if/when things could go horribly wrong.  I have grown used to Corey being around and to his help in our little family unit.  To have that part of us leave was scary.  What if something went wrong?  What if I came down with a flare up?  What if Cleo suddenly got really sick?  Then what?

Well we’d deal.  We’d get through it somehow.  It may feel like I’ve been alone these past 4 days but the truth is, Cleo Kitty and I take very good care of each other and I have a very important support system out here in LA who can help me if something comes up.  We’d take it one moment at a time.

And then the idea of me not going because I was making a healthy decision not to push myself too far on what was going to be a whirlwind trip was so very hard for me.  It brought back my grieving about having MS and lupus.  It reminded me that I have limitations and there are some things I just can’t do…at least right now.  I really struggled with that.  Sure I could’ve gone…and risked feeling absolutely awful during and afterwards but I didn’t like that idea at all.  I miss my family.  I love my family.  I hate not being able to see my family more.  I can’t stand that we’re on opposite coasts…BUT I want to feel at least okay when I see them.  I don’t want to feel even more tired because I was so stubborn that I just had to go.  Yuck.

So you know what?  Cleo and I got through.  Seems like Corey did too.  He’s on the flight home to us right now as I write this.  I was able to take some time for me and to even relax.  I don’t think I would’ve been relaxing on the trip.  And I can almost bet I feel better physically now than I would’ve had I pushed myself not to miss anything and to go…to act like I can live life the way I think a “normal” person lives…as if I know.

I’ve learned yet again that it is OK to make decisions that are healthy for me and to take care of me.  I am the one who has to live the closest to me.  I deserve to feel better.  And you know what?  Cleo and I are doing pretty darn okay.

And we’ll be doing even better when we have Corey back in our lives tonight.  We kinda like him.  You know…KINDA.

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