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
Nahleen.com: On the Inside Looking Out 