Posts Tagged With: healthcare

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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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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Diagnosis Part 4: “9 Times Out of 10”

In October of 2002 I’m guessing I was out of my mind.  I must’ve been.  What was I thinking?  I was working a full time job, I had just finished working as a Production Assistant on a “B” movie that I never heard about again, I was still working out and eating really healthy and then I decided that I needed to get a second job because I just wasn’t making enough money.  Hey, I was 25 and I was invincible right?

Wrong.

It was October in Los Angeles, CA so I’m guessing it was quite hot.  It usually is at that time of year.  I wouldn’t have known because I was too busy running around.  I worked full time at my day job in television which had its own stress.  I walked every day during lunch and worked out at least three times a week.  I ate well and I had lost almost 50 pounds.  My second job consisted of working in a linen store and running around lugging big bed spreads and other bed linens up tall ladders and dealing with customers.  Things were going well…I thought.  Yeah sure it was a bit hard on me but it would be on anybody.  I could do it.

Somewhere along the way as my feet continued to tingle on the bottom, I started feeling that dreaded tingling symptom travel up my left leg.  Then it traveled to my left arm.  Then my left hand.  I denied it.  I ignored it.  It couldn’t be happening.  An echo of a memory of my Primary Care Doctor’s voice rang in my head from months before, “Is the tingling going anywhere else up your leg or in your arm?” and I told him no and asked him why to which he replied, “Oh no reason.  It could just be more serious if it ever happens”…”ever happens”…”ever happens”.  Those two words rang in my head but I pushed them away.

Did you know it’s really hard to push that tingling symptom away when it doesn’t go away?  I waited two weeks until the tingling sensation then jumped from my left hand to my right hand and then I admitted it to me and somehow told Corey about it.  I wanted to be in denial.  I wanted to believe it wasn’t happening.  If I didn’t talk about it it would go away.

So somehow I got over myself and called my Rheumatologist to make an appointment.  I sat in that exam room and I told her about these new symptoms.  She looked at me long and hard and kept her facial expressions very still.  Then she said she wanted to order an MRI for me.  I freaked out.  An MRI?!  BUT it’s just tingling.  That’s all.  MRIs are to check for serious things.  I only had tingling.  That was all I had been told by how many doctors till then?  Somehow I got out the words and I asked her, “Why an MRI?” and she beat around the bush a bit and said, “Well your symptoms could be indicative of many things.  9 times out of 10 it’s not MS but it’s always good to check just in case.”  And she also made some comments about the lack of attention from my previous Neurologists and how she couldn’t believe I hadn’t had an MRI before then but that she’d get it taken care of.

MS????  What did it even stand for?  I didn’t know it stood for multiple sclerosis.  Why would I know that?  It’s not like we learn about all of the diseases out there during our normal lives.  What was that?  It sounded awfully serious.  All I could picture was those poor celebrities we had seen in the limelight who were in wheelchairs, if anything.  Then again, why would it be MS?  I hadn’t been diagnosed with anything else so there was no need to jump to any conclusions now.

So how did she calm me down?  Well she talked to me about her health problems and how she had just had to have an MRI herself and she told me the tricks of where to put my hands and how not to feel too claustrophobic and what to do when I was in the tube, etc.  She tried to show me how she could relate and some of what she said still sticks with me now when I have to have follow-up MRIs as part of my multiple sclerosis healthcare plan.

You know I somehow knew I had MS.  I don’t know how or why but something about it clicked for me.  I spent a lot of time contemplating it and talking about it with Corey while I waited for my HMO to go through the horrible rigamarole that was “necessary” to get me approved to have an MRI.  I had to wait at least a few weeks to be able to schedule my MRI let alone have one.

And you know all of this didn’t stop me from keeping up with my crazy full schedule.  To me I had no reason to slow down and stop.  Not yet anyway…

 

The next Blog will be about my 1st MRI experience.  It was a truly traumatizing and life changing experience for me that deserves it’s own Blog entry.

 

Thank you for reading my story.  It is so very hard to write but so necessary to express and share.

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