Posts Tagged With: December

I’m On The Right Track Baby, I Was Born To Survive

Thank you Lady Gaga for those incredible words!

“I’m on the right track baby, I was born to survive.”–Wow. Profound for sure.

Lady Gaga’s song, “Born This Way” inspires me to get up in the morning. It helps me to keep on moving. It’s been over a month since I’ve posted anything and I think a lot of that is because I have had so much up here in my mind and yet not a lot of words or perhaps too many words to process it all. It’s been quite a month. We traveled to lovely peaceful Cambria again and were able to get away for a few days. I had a wacky week beforehand running around (as much as someone who doesn’t like to run and isn’t able to really run with MS and lupus can), then was on the trip and was able to take some deep breaths and let go, and then when I came back I crashed.

Life started getting really hard again when I was back home. The sun started getting more intense as June traveled through its days and the temperatures climbed higher and my body reacted right away to it. As I’ve mentioned so many times before, the summer is the hardest time for me. The heat makes my MS act up and the sun makes my lupus act up and they act up together and that creates what I keep hearing from everyone I encounter the oh so technical term and experience of a “Double Whammy”.

GOOD TIMES ALL AROUND.

Um actually…NO. NOT GOOD TIMES.

This has happened to me every summer since at least right before my MS diagnosis in December 2002. Summer kicks my butt. I feel like a different person. I wonder if everything has gone “kerflooey” with my body and this is it. This is the big bad ATTACK of all attacks and it’s a “loopty-loop rollercoaster” (phrase given to me by my fabulous Chiropractor last week and I’m stealing it because it is a perfect description) and I’m done for. Except…that doesn’t really happen. What happens is I feel crappy. I start to get the “heavies” a lot more which remind me of heavy fatigue that feels like a dental x-ray vest thingie from the ’80s and that to me is a HUGE reminder of RED FLAGS GALORE to slow down and pretty much stop EVERYTHING. That includes using my brain too much because even overstimulation is a problem. Plus I start to tingle more, my muscles get tighter and achier and have a harder time releasing, I feel more weak, I get the MEGA BLAHS, I just feel gross, my cognitive symptoms really start acting up more than ever and I have a hard time focusing and dealing with numbers (used to be so good at numbers and math in high school and college and THANK GOODNESS I didn’t go into Accounting or something when I was being encouraged to because I’d really be at a loss now), I most often feel like the life is being sucked out of me and I could go on. Then I have these “better” times where I feel like I could get through. I still don’t feel as good as when all temperatures are cooler and my body finally has a real chance to cool down but there’s a calmer plateau to land on for a bit. Then it starts up again and it’s not usually the same as before but different so I have no idea what’s going on EVER.

The point is, life with my poor inflamed body is EXTRA EXTRA HARD.

EVERYTHING TAKES SOOOOO MUCH MORE EFFORT.

ACK!

So right now I’m trying to keep things more simple. Ha! Turns out life is still happening and things still need to get done but I need to go with what my body needs and the lines get blurry there. What does my body need? Does it need more rest? Does it need my mind to stop worrying about how I’m feeling and get a break? Does it need to be cooler? Sometimes it doesn’t like the cooler temperatures because then the lupus starts acting up more and making my joints hurt. Sooooooooo, I’m constantly stuck between a rock and a hard place and there is always a compromise of sorts. There is never a time my whole body (including mind) are happy.

And that’s why I share this Lady Gaga song with you. So much of this song is about acceptance of self. And what’s even more interesting about her is that lupus runs in her family and there has been so much talk that she has lupus but she says it’s borderline lupus. Who knows what that means but to me this song means even more because maybe just maybe she might GET IT.

This video may be just a BIT, yeah JUST A BIT, theatrical and over the top but the words say it all. The message is so clear.

I AM WHO I AM AND I NEED TO LOVE ME.

I’M BEAUTIFUL…I’M ON THE RIGHT TRACK (even if it doesn’t feel like it right now)…AND I WILL SURVIVE.

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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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HOLY MOLY DECEMBER!

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

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

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

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

BUT THEN, I received word (ONLY BECAUSE I SAW A DISCREPANCY IN A PIECE OF MAIL AND HAVE LEARNED TO ADDRESS THESE THINGS) that my Private Long Term Disability Entity that was connected with my previous employer (and who I HAD BEEN PAYING FOR SINCE I STARTED 11 YEARS BEFORE I LEFT), had TERMINATED my DISABILITY COVERAGE and NO ONE HAD TOLD ME ABOUT IT!  AGAIN–the ONLY REASON I FOUND OUT EVEN WHEN I DID WAS THAT I CALLED AND ASKED ABOUT A PIECE OF MAIL I HAD RECEIVED THAT MADE NO SENSE TO ME…

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

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

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

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

SOOOOOOOOO UNCOOL to say the least of descriptive words possible…

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

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

I DID NOT ASK FOR MULTIPLE SCLEROSIS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR LUPUS AND FOR IT TO BE CHRONIC.

I DID NOT ASK FOR ALL OF MY OTHER CONDITIONS THAT GO ALONG WITH CHRONIC AUTOIMMUNE DISEASES AND FOR THEM TO BE CHRONIC EITHER.

I DID NOT ASK FOR TONS OF MEDICATIONS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE.

I DID NOT ASK FOR THIS MANY DOCTORS.

I DID NOT ASK FOR THEM TO BE EXPENSIVE EITHER.

I DID NOT ASK FOR ANY OF THIS.

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

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

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

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

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

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

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

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

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

MS IS ENOUGH FOR DISABILITY.

LUPUS IS ENOUGH FOR DISABILITY.

MS AND LUPUS ARE DOUBLE ENOUGH FOR DISABILITY.

THERE SHOULD BE NO QUESTION.

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

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

Much love!!!!!!–Nahleen

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