It's the Final Countdown

Here we are at the end of another year. Don't worry, this won't be “A Year in Review” kind of post, even though so much has happened for me, personally, in 2015. If you've been a semi-regular reader, though, you already know most of the highs and lows, so I don't feel I need to recap.

Looking ahead to 2016, I'm optimistic. Then again, I'm always optimistic, New Year or not. I believe in hope. I believe in love. I believe in laughter. I believe they should be in everyone's life, and used liberally.

Speaking of hope, I got my Tecfidera yesterday! I haven't completely decided whether I'm going to start it today or tomorrow. I have to take one pill twice a day on a full stomach to reduce the chance of stomach upset. I'll take the second one after dinner, but the first one is going to be tricky.

I take my thyroid medicine in the morning and I have to take that on an empty stomach. They recommend you don't eat for an hour afterward, which isn't an issue because I'm not big on eating breakfast. Enter Tecfidera, and I have to eat in the morning. And that's fine because I really should eat breakfast. It's just going to be a matter of getting used to it.

I'm leaning towards starting the medicine tomorrow because my husband will be home. Heaven forbid I have an adverse reaction while I'm home alone with the kids. That would not be good.

I'd be remiss if I didn't mention that it's possible Tecfidera can cause a lot of side effects and actual problems. On the other hand, Copaxone was considered to have very few side effects, and I was miserable on it. As usual, I'm optimistic about this medicine. And, it's NOT an injection!

I could launch into a tirade about the side effects of MS medicines, but, what's the point? This is what we have available to us right now. When I was first diagnosed, we didn't even have oral drugs; they were still a concept. I'm grateful to have the opportunity to try a medicine that isn't given through an IV or a self-injection.

I mentioned actual problems that Tecfidera can cause. It's been noted that Tecfidera might cause something called PML (progressive multifocal leukoencephalopathy, a viral infection of the brain that often leads to death or severe disability). The instance is really rare; about 155,000 patients are taking Tecfidera, and I believe there have been 4 cases of PML reported. Your chance of contracting PML increases if you test positive for something called the JC Virus. JC stands for John Cunningham, not who you're thinking of, by the way.

So anyway, guess who tested positive for JC virus antibodies? Go ahead, guess! Okay, I'll give you a hint: Who has two thumbs and wrote the post you're reading? That's right, this girl! So when I say I'm a little nervous, I'm a little nervous. But I'm not scared enough not to try Tecfidera.

Like I said, the possibility that there's a slight chance I might contract PML isn't enough to dissuade me from trying Tecfidera. I'm confident my doctors (and I) will be watching my blood work very closely.

Lastly, today is my wedding anniversary. Twenty-one years married to the man who not only tolerates my quirks and my inability to do much on some days but by all accounts, really does love me. I truly appreciate that he stood by the “in sickness and in health” part of our vows.

Happy New Year to all of you. May your 2016 be filled with good health, happiness, giggles and hope. And coffee. Good coffee.

I Feel Like I've Been Here Before

As I've previously written, we celebrate Christmas in my family. If you celebrate Christmas, I hope yours was wonderful. If you don't celebrate Christmas, I hope you had a wonderful day doing things that made you smile.

You may recall that I was scheduled to get my Tecfidera today. You can read about it here.

Was scheduled

I got a call from the specialty pharmacy this morning to schedule delivery of my medicine which was supposed to be shipped yesterday and delivered today. We join our phone call in progress.

“Because this is your first time taking Tecfidera, we'll need to switch you over to speak with a pharmacist who will go over”

I interrupt him, “Wait a minute. I did all that. Last week. That's how I got my delivery date of today.”

“You spoke with a pharmacist?”

“Yes. She was awesome and her name was Priscilla*.”

“And when did you speak with her?”

“Christmas Eve. December 24^th.”

“Did you call us, or did we call you?”

“Does it matter? But, the call came from Biogen, who did a three-way call between them, me, and you. It was during that call I spoke with Priscilla.”

“Okay, all right, all right. Now that we got that all out of the way, we can go ahead and schedule your starter pack of Tecfidera” he said in a very upbeat tone.

I was not nearly as upbeat, “Terrific. Maybe this time things will go as they should and I really will have it tomorrow”.

“You see, what happened was instead of moving your order forward to processing, your order got sent backwards”.

“Oh, goody”.

“Don't you worry, you will have your shipment tomorrow morning”.

“You'll have to excuse me for being less than enthusiastic and trusting. I believed your company last week when you said I'd have my medicine today”.

“Okay, I'll just need to go over your copay information”

I interrupt again “No. You don't. I've done all of this. ALL. OF. IT”.

“Oh, and they discussed your copay amounts”?

“YES. It's $0”.

“Great. That will certainly help”.

“Yes, it will, if I ever get my medicine”.

So here we are. The specialty pharmacy is part of a national chain. I'm extremely glad I don't have my regular prescriptions filled through them.

And of course, I'm starting to have second thoughts; why are there all these roadblocks between me and my medicine? Maybe I'm not meant to take this medicine? Or maybe it's just ineptitude and has nothing to do with il destino.

*Of course Priscilla isn't her real name

Merry Christmas!

Today is Christmas Day.

Wishing you and yours a very Merry Christmas. Hope your day is full of laughter and love.

Go make new cherished memories. Hug your loves. Tell someone how important they are to you. Make the most of this special day.

XOXOX to each and every one of you.

I'm Not Getting Tecfidera for Christmas (But I Will Have It to Ring in the New Year)

So, update on my Tecfidera.

After weeks of back and forth between Biogen and me, the specialty pharmacy who will be filling my prescription called the other day to schedule my delivery!! YAY!! Then the agent asked how I'd be paying for my $2800 copay. What? No, I'm in the $0 copay program through Biogen.

The pharmacy didn't have that information.

Basically, back to square one from weeks ago.

I called Biogen back and told them what the pharmacy said.

The agent confirmed that I am in the $0 copay program, and the information was sent to the pharmacy. However, the information was sent to a different pharmacy because that's who Biogen usually uses. My insurance company (who is NOT paying for the drug, by the way) demanded that my prescription be filled by a different pharmacy of their choosing.

Biogen called the pharmacy while I was on the phone, and relayed every piece of information needed to process my prescription.

Today, the pharmacy called to schedule my delivery (again). Lo and behold, all the planets and stars aligned, and they had all the information necessary to ship the Tecfidera at no cost to me! What a wonderful Christmas gift!

I will have my medicine on Tuesday the 29^th!

So I'm not getting Tecfidera for Christmas, but it's pretty darn close.

Another Ghost of Christmas Past

When I was younger, say, high school aged, I would create these fantastic Christmas lists. When I say fantastic, I mean it in the sense of being full of fantasy. Sometimes The List would span 3 sheets (front and back) of loose leaf paper. Friends and relatives would just sit and laugh at the sheer outrageousness of it.

I would ask for things like “Paul Newman”, a mansion in the hills, or a Ferrari. The list would be full of one exorbitant item after another. I think I asked for a trip to the moon, flawless emeralds, and flawless diamonds. I'm pretty sure one year I also asked for every item from the Sears Wish Book. Do you remember that book? The day it would come in the mail, I'd sit with a pen, circling the items I wanted, crossing out things, circling others, and changing my mind a thousand times until Christmas.

Okay, here I have to fill you in with a backstory.

I didn't learn to play jacks until I was in high school. Once I learned, I was hooked. I have lots of memories of playing jacks with many friends, and my one nephew who is actually older than I am (by 2 months, but again, I digress. Maybe I should call my blog, "But I Digress" or "So Anyway"). We would make up new “sies” from time to time, because we wanted something different than onesies, twosies, etc. We played jacks pretty much anywhere there was a flat surface, and some of us always had jacks with us.

I loved to play jacks.

One year on that fantastical Christmas list, I asked for 24 KT gold jacks. Now, by this time, it was getting more difficult to find the metal jacks; they were being replaced by plastic ones. It was also hard to find jacks that came with a rubber ball instead of a super ball. A super ball had too much bounce, and we considered it cheating to play with a super ball.

Fast forward to Christmas morning. My dad is opening his crossword puzzle books and my mom is opening her gloves. My mom was notorious for losing one glove (a trait I inherited); she would almost always lose the same hand, usually the left glove. So, like dad's crossword puzzle books, if you were stumped for a gift for mom, you could always buy her gloves.

Except this one pair of gloves she had that were soft black leather with red lining. Many years ago, my mom had visited my sister one year, and bought herself a red coat. This coat was the most beautiful shade of red; not too tomato-y and not too fire engine-y. The style of the coat was perfect. My mom looked amazing in that coat, and you could see her glow because she felt so good wearing it. Oh, gloves. So my sister bought her those black gloves to go with that coat. Those gloves were the exception to the rule of losing gloves. She still had both of them in her possession. I need to ask my sister if she wants them.

So, Christmas morning, we're opening gifts, and my mom handed me this small box, the size of a watch box. I unwrapped the package, and it was a hinged green leather jewelry-type box with ivory satin lining. I opened the box, and what was in there? Gold jacks. My mother had found a new set of metal jacks (with the rubber ball, not the super ball), and she sat and painted all 10 jacks with bright gold paint. She told me the color was called 24KT.

That set of jacks was one of the most wonderful gifts I've ever received. Those jacks were my Red Ryder BB Gun. Over the years, the paint flecked off, and some broke or went missing, but I will never forget the Christmas I got gold jacks.

Christmas Shopping and Stuff

My dad, like many men, was not a big shopper. When my mom would go grocery shopping, my dad would take her, then wait in the car, but he'd bring his crossword puzzle to pass the time. Both of my parents were really into doing crossword puzzles. If you were ever stuck for a gift for my dad, you could always get him crossword puzzle books.

But I digress.

Like I was saying, my dad wasn't a shopper. Except at Christmastime. Oh, during Christmastime, my dad could not get enough of being in stores. I have so many memories of my mom, dad and I going from store to store, browsing, buying, and even the occasional lunch at Arby's.

My dad loved going to discount stores to find that one treasure tucked away among the Ronco pocket fishermen, magic rocks, pet rocks, and snow block makers. He was always looking for unusual and cute gifts or decorations. Mostly, he was looking for Christmas albums. He would buy any and every compilation Christmas album he found. Some of them were great, and some were really terrible.

One year, we went to a store called The Big N (I don't know what the N stood for). If you're looking for a comparison, it would be similar to Big Lots or Ollie's if memory serves. There, he picked up a Christmas album called “Santa Claus Is Coming to Town” by The Caroleers. What? You've never heard of The Caroleers? Join the club. No one has. Except those of us who owned that album, or friends who came over and heard that album.

That album had the classics “The Weatherman's Christmas Prayer”, “10 Thousand Santa Clauses”, and “Icicles, Holly, Red Berries and Snow”. Still with me? But there was one song on there that I adored, and still do. It's called “The Day Before the Night Before Christmas”.

Every December 23^rd, I'd sing that song since we bought that album so many years ago. Of course, no one outside of my house had ever heard the song, and I would get weird looks from everyone. Looking back, it was probably a combination of my singing and the song, but whatever. I still sing the song, and now my kids do, too.*

Way back when, Firestone (yes, that Firestone) put out Christmas compilation albums, and we had some of those, too. It seems I get my eclectic taste in Christmas music from my father. Basically, if it was a Christmas album, my dad would buy it.

Growing up, we always had Christmas music playing while we were decorating. Now, I do, too. I play Christmas music while I wrap presents, when we're baking cookies, and of course while we decorate the tree. My mom would decorate the house with Christmas things, and my dad would decorate the air with Christmas music.

As much as my dad loved Christmas music, there was one song he just couldn't stand: “Feliz Navidad”. I don't know what it was about that song, but it really grated on my dad's nerves.

My parents loved Christmas and shared that love with me. I hope I can share that love with my family as well as my parents did with me. My parents loved buying gifts for people, they loved seeing relatives and friends, sending and receiving Christmas cards. My mom loved baking cookies, and my dad loved eating them.

I love everything about Christmas. I love how the world is just a little kinder, a little less sharp. I love the sounds and smells of Christmas. I even love Christmas snow (not that we'll get any this year). I love how kids are filled with anticipation, excitement, and wonder. I love how seeing loved ones is that much more special because it's Christmas. Hugs are a little tighter, goodbyes a little longer. Christmas evokes feelings like no other time of year.

Christmas is also a time for remembering. You remember Christmases past and all the things that went with them. The people, the parties, the gifts, the food...all of it. I expect this Christmas will be full or melancholy memories, and sharing the funny stories we remember. Everything will be just as it's meant to be, and we'll be making new and different memories.

*By the way, I know this is sort of a rehash of my Christmas music post, but it's also a little different. I haven't totally lost it.

Christmas Yet to Come

All day long I've been coming back to this blank white virtual piece of paper. I have everything to say, and nothing to say.

My memory is flooded with the ghosts of Christmases past, and I fear Christmas yet to come. I know it will come, even without ribbons, packages boxes or tags. And it will be a good Christmas as they all are. It will be a sad Christmas as some are.

Yes, there are ribbons, packages, boxes and tags under the tree. They are the gifts bought with love in a happier time. A time filled with optimism and hope. The time when we were looking forward to having my mom join us on Christmas.

This year, one stocking will remain empty. One plate not filled. One cup of coffee not poured. Yet the house will be filled with joy and laughter. The house will be filled with the happy mess of discarded wrappings. Christmas songs will play and we will sing along. We will eat, we will drink and we will be merry. And we will be missing my mom.

We Need a Little Christmas (Right This Very Minute)

As many of you know, I lost my mom last week, and I haven't much felt like writing. In many ways, I still don't, but in some ways, I feel like I need to.

After my dad passed away in the fall of 1996, my mom started journaling. It was really good for her, and she did it for many, many years until very recently. I realize that a blog is much less personal than a journal, but the concept of writing out your thoughts is still the same.

My sister posted the consummate synopsis describing our collective experience of my mom's passing. I know this post won't come close, but I feel like I need to write it anyway. And please don't misunderstand; I don't at all feel like I'm competing, rather that her post was so perfectly eloquent that I'm not sure I can say anything else.

When I was a kid, I always begged my mom to decorate for Christmas early. She would say, “Not until after my birthday”, which was December 16^th. I used to sing this song every day until she decorated. One day after her birthday, I'd come home from school, and the house would be magically transformed into a marvelous wonderland of nostalgia and sparkles. 

It wasn't until I was older that I realized some things.

Those of you who have December birthdays often find your birthdays combined with Christmas, or worse yet, virtually ignored. You get the “combination birthday/Christmas gifts”, your presents are almost always wrapped in Christmas paper, and rarely did you have a birthday party. I think that not decorating until after her birthday was my mom's way of saying, “nope, my birthday is important, too”. Yet, a more selfless person you will never meet. She was generous with her time and material things as well.

We had a LOT of Christmas decorations. It was Christmas from one end of the house to the other. We had lights for all of the windows, towels (kitchen and bathroom), things that hung on cabinets, things that hung from lampshades, tablecloths, runners, and things that sat on most any flat surface. When it was Christmastime, it was CHRISTMASTIME.

Now, I'm in awe that my mom could do it all within the time frame of a single school day. It takes me days to decorate for Christmas, and I don't think I have as many decorations as my mom and dad did.

Then, there was our tree. Until I moved to Chicago, we always had a real tree. My mom, dad and I would pile in the car to search for the perfect tree. As I got older, my mom and I would go get the tree.

Our tree was really special. We had a one-of-a-kind tree stand that my father built. The reservoir for the trunk and water was steel (Bethlehem Steel), and it was set in a square wooden platform about 2 feet across. It was painted red and white, and it was electrified so you could screw bulbs along the outside perimeter. I always loved that tree stand.

Getting the tree straight in the stand was near torturous. Because the reservoir was steel, it wasn't adjustable in any way. My dad kept a collection of shims and blocks that were used to keep the tree in place. One year, no matter what we did, every time we put in a block to keep it steady, it would lean. We'd shim the other side to counter the lean, and it would lean the other way. It was like the Marx Brothers putting up a Christmas tree. We managed to get it straight enough.

The lights for our tree were amazing. We didn't have the small lights like trees have now, but the old glass ones; the size of nightlight bulbs. And they got HOT. Many a piece of tinsel melted, and many little fingers got toasted from them. That's where I learned the importance of keeping the tree watered, lest we start a fire. Thankfully, we never had a fire.

My father would put the lights on the tree, which was no small feat. First came the untangling of the many strings that apparently decided to huddle together through the year. Then, the testing to be sure all the lights were lit. If a bulb was out, there was the frantic rush to find the spare bulbs, usually culminating with a quick trip to Valu (a local hardware store chain) to get a pack of bulbs.

Some strings of lights had metal clips to attach them to the tree, but some strings were so old that they had braided cloth over wire with these little gumball-type sliders. You would slide down this ball, put the string around the branch, then slide up the gumball to tighten it. My dad had many a poked finger between the needles and the metal clips.

After the lights were on (and working), my mom and I would put the ornaments on the tree. Each one had a story. I loved hearing all the stories behind the ornaments.

We also had a village for under the tree. Not just any village, but a Plasticville village that was large enough to create streets and parking lots for businesses.

My mom would lay under the tree assembling these buildings, and laying out the town. The buildings were incredibly detailed. One house in particular always gave my mom trouble. It had a downspout that hung from the roof. She would no sooner get the downspout on, start to get out from under the tree, and the downspout would fall off. When I was really little, I couldn't understand why I wasn't allowed to play with the “toys” under the tree.

 

Growing up in my house, Christmastime really was the most wonderful time of the year. There were parties, relatives, friends, food, drink, love and laughter. My parents were party people; any excuse to have a party was a good enough reason, but Christmastime was the pinnacle of reasons.

Which brings me back to some of what my sister said about this past week. My mom was the ultimate party planner; the ultimate organizer. It's absolutely the way she intended; getting both sides of our family together at Christmastime for food and laughter.

Hello

I am starting to feel like I want to write again (that's good, at least for me).

Hopefully, in the next few days, I can scrabble a post together.

Thanks for your patience.

The Girl and the Bitter Pill

We find the girl walking through the woods, somewhat lost, though she had traveled this path many times. Too many times, as far as she was concerned. The path had changed through the years because each person who took the path left their own mark.

This particular day, the path seemed smaller, nearly claustrophobic, though the girl was not prone to claustrophobia. It was a little darker, a little narrower, not as easily navigable as in times past. Oh, she was sure she knew the way, but she felt lost, just the same.

Today, she did not want to follow the path, not that she liked this path any other day, either. She knew it was necessary. The brambles poked at her ankles, little tiny pricks of pain with each step she took. Errant branches seemed to grab at her, tiny pebbles skittered under her feet, making her footing unstable.

Still, she forged on, knowing it was required that she take this path. She found a small bit of solace knowing she would be joined by her family soon, once they traveled their own paths to get to their mutual destination.

She tried to think about how wonderful it would be to see her family, how they always laughed together. How their hugs were so powerful that they sometimes smothered her, but in a good way.

Her mind wandered back to the times before she had to walk this path. The happier times, the fun times. She tried not to think of the time immediately before her journey, but she kept replaying it in her mind's eye over and over.

The cold visitor who always arrived with the bitter pill for her to swallow. Many times, she thought, “I just won't swallow it. I'll pretend to swallow it, but spit it out later. That way, it won't be real”. Every single time that she tried this, somehow the visitor sensed her thoughts and commanded her without words to swallow that pill.

This time, the pill was more bitter, more acidic, more unbearable. By far, it was the worst pill she'd had to swallow yet. Swallow the pill, take the path. It was a cadence she'd known for a very long time, but it never got easier. It was inevitable, to walk this path.

The brambles kept pricking at her ankles, the branches kept grabbing at her, the pebbles kept skittering, and the hurt kept coming. The bitterness of the pill had not yet subsided, and she knew it would be a very long time before it did.

Is It Asking Too Much to Expect Things to Work Consistently?

I use Apache Open Office as my office suite. I've used it for the past few years since my MS Office trial expired. At first, it felt clunky and cumbersome, but it wasn't difficult to figure out the nuances. The program even reads Word documents, which is a plus. For a free office suite, it does what I need it to do.

Yesterday, I ran into my first minor road block with the program, though. Well, it wasn't exactly a roadblock, but an annoyance. For two days, I'd been having issues with my office program. The auto spellcheck would highlight e v e r y s i n g l e w o r d as misspelled. It was distracting, annoying and time-consuming. Yesterday, I wrote most of my post in Blogger because I couldn't handle seeing all of the red squiggles.

I knew it was a setting somewhere because I had just done an update in Open Office, but I didn't have the focus or inclination to look for a fix yesterday. I tried all the settings within the program, but none seemed to address the problem. This morning, I decided to dive into Google to find the fix because I couldn't go one more minute with all the distractions.

Sure enough, there was an entry in an Open Office forum detailing the steps to take to fix the issue. I was happy to find this information, but a little perturbed to find the answer. I was happy because I could fix the problem, but perturbed because obviously, it was a big enough issue that Apache had to address it in a help forum.

As I said, I've been using this program for years, and essentially it's been doing what I need it to do when I need it to do it. I did discover some limitations when I was making the decorations and invitations for my daughter's birthday party, but a different download solved those problems.

And I'm back to “why”. Why did this update disrupt these settings? Why did none of the previous updates change the settings? According to the forum, the first time someone asked this question was a few years ago, so it's not as though it just happened with this particular update. Why can't they fix the bug that causes the disruption? Why does it only happen to some users some of the time?

 

Sometimes I drive myself crazy asking why. It's like having a toddler with me all of the time, inside my own head. It especially drives me crazy when there isn't an answer aside from “because”. I guess I dislike randomness; feeling like there is no purpose for something that occurs.

You would think I'd be more accepting of randomness at my age, and given my circumstances, but I find that the older I get, the less I just blindly accept things. I need a reason, a purpose. Things happening without an answer to why? I just don't deal well with it.

I'm Getting Tecfidera for Christmas! Maybe.

I don't know if you remember that I wrote about being approved for Tecfidera. If not, you can read about it in this post.

The extremely condensed version of the post is that I was approved for a $0 copay program for Tecfidera.

That was a little more than a week ago, so one would assume that the medicine would be forthcoming, right? Well, one could assume, but one would be incorrect. I've been back and forth with phone calls between Biogen, insurance companies, and my doctor's office.

Biogen called me one day to tell me that they assigned me to the incorrect assistance program. Apparently, they have different departments for patient assistance programs. There is a department that gets you assistance with your insurance, and there is a department that gives you assistance if your insurance company refuses to approve the medicine. I would still have a $0 copay, but I had to be reassigned to the correct department.

In the meantime (while I was waiting to hear back from Biogen about being reassigned), my doctor's office called me to tell me that my insurance company finally did approve the Tecfidera. Seems that no one from the doctor's office ever filed the prior authorization form with the insurance company. Oops. Sorry.

So then today, my insurance company called me to tell me that I was approved for treatment.

I started this post while I was on hold, and the robotic yet cordial person* came back on the line twice to thank me for holding and for my patience. The third time she came back to the phone, she apologized and told me that she could call me back so I don't have to sit on hold. Great, let's do that.

So now, I'm waiting for the phone to ring.

All right, hot off the presses! Here is the latest information regarding the saga of getting Medicine for Lou Ann.

The specialty pharmacy voided the prescription when they thought I didn't have coverage. Biogen had to call my doctor's office to get them to send the prescription back to the pharmacy.

My cordial robotic representative will be out of the office on Monday, so I probably won't hear anything until Tuesday.

Maybe I'll be getting Tecfidera for Christmas!

*I wrote about a cordial yet robotic person in my previous post. This person is a different cordial yet robotic person.

A Joyful Noise

Many years ago, my husband bought me one of those multi-disc CD players that hold 200 discs. I have a love/disenchanted relationship with it. I love having so much music of my choosing playing without commercials, but unless I take the time to put the CD covers in the book thing that came with it (which I've never done in over 15 years), I really don't know what I have loaded in there, or what's coming on next. Right now, I have about 40 of my Christmas CD's loaded in it so I'm listening to Christmas music non-stop.

Funny thing, Christmas music.

I can listen to Christmas music performed by just about anyone. I have the Kenny and Dolly CD, The Muppets, Vince Guaraldi, Narada, a few by Mannheim Steamroller, TSO, a few from Glenn Miller, The Nylons, and many, many compilation CD's. I have Mahalia Jackson (whose version of “Go Tell It On the Mountain” is my absolute favorite) and Patti LaBelle, Rosemary Clooney, Bing Crosby, Duke Ellington, Bruce Cockburn, Anne Murray, and more. Many more. Heck, I even have a Michael Bolton Christmas CD.

I am much less discerning about Christmas music than I am regular music. I guess it goes along with the whole “there's something about Christmastime” feeling.

There are songs that I adore and it doesn't matter who performs them. Then, there are specific versions of songs that I just love. There are lots of reasons why I might like a specific version of a song. For one thing, it just might be awesome (Like Mahalia Jackson singing “Go Tell It On the Mountain”), or it might be sentimental and nostalgic. Certain versions of certain songs were standard in my house while I was growing up. It wasn't Christmastime without Ray Conniff playing on the stereo. Steve Lawrence and Eydie Gorme singing “Let It Snow” will be forever ingrained as the crowned champion version of that song to me.

Barbra Streisand sings my favorite performance of “Jingle Bells”. It's on an obscure compilation disc I picked up in a grocery store while we were living in Chicago (though I'm pretty sure it was on her Christmas album originally). You either love it or you hate it, there's no middle ground with this one. I'm not really sure why I like it so much, it's a really strange arrangement, but I think it works.

“Little Drummer Boy/Peace on Earth” by David Bowie and Bing Crosby was originally performed on a televised Bing Crosby Christmas special. Let that sink in for a second...David Bowie was a guest on Bing Crosby's Christmas special. My dad really loved that version of that song; I remember watching that special all those years ago. In the years before YouTube, I went crazy searching for that song. I finally found it on a compilation disc one year. The disc is called “The Edge of Christmas”, and aside from Bing and David, it also has the Cocteau Twins, The Payolas, The Ramones and The Waitresses to name a few.

When I was really little, my parents bought me a kids' Christmas album by some group I'd never heard of. Most of the songs were horrible on it. Even though there were some awful songs, there's one song from that album I sing every year to my kids. It's called "The Day Before the Night Before Christmas". Every year, I'd search the internet and YouTube for that song, and one year, there it was!

I could ramble on and on about music, and specifically Christmas music, but we both have stuff to do.

Tell me some of your favorites!

The Girl Who Would Not Surrender

Another installment of A Girl, A Goblin, and An Evil Spell, and The Wizard's Potions

The girl was prone to reflecting back to that fateful night when the goblin visited her all those years ago. She was desperately trying to remember the exact night of the visit, but because of the goblin's slyness, she couldn't really be sure when he came.

She supposed it didn't really matter precisely when he came, but she really wanted to know why he decided to visit her. She didn't ponder this question in a “why me, poor me” kind of way, rather, it was more like a “what is the reason you chose to visit me, why are these things going on inside of me, was I predisposed to be visited” kind of way.

One day, she posed the question to the wizard. “Why do you suppose the gremlin visited me? I'm not special; I'm not a threat to be stopped” she said.

“You will drive yourself insane asking those questions. In truth, there is no answer. Why does the tornado choose the path it does? Why do some snowflakes land on your tongue and not others? Why do some flowers bloom before others? Why does a bird choose to build its nest in one tree over another? Best not to ask why, when the only answer is because” he replied.

Still, the girl couldn't help but wonder why. Why did the spell affect her one way, but it affected someone else in a different way? She tried to follow the wizard's advice the best she could, to stop asking questions that have no answers, but occasionally, found herself falling down that rabbit hole.

The girl would wonder why the wizard's potions didn't work for her, but others had great success with them. She wondered why some days were so easy for her, and why some days were so hard. She wondered why sometimes she felt as though her brain was humming like a colony of bees, yet other days, she would leave the house without shoes.

Every so often, she would daydream about finding the gremlin, and asking him all of these questions. She imagined entire conversations in her head, which was absolutely ludicrous because she had no idea how he would answer any of her questions. Or if he would bother answering any of her questions. If he would even acknowledge her at all, or remember her, for that matter. And how would she know she had the right gremlin? She would chastise herself for giving in to flights of fancy. Sometimes the girl's head was a busy and confusing place. She tried not to go inside there too often.

Still, through it all, the ups and downs, the struggles and ease, she did her best to maintain her positive outlook. She may never be cured, but she still had a lot of living to do. If that meant fighting battles with her body sometimes, so be it. It's just what she had to do. She would not go quietly; she would not surrender.

Oh sure, on particularly rough days, she would get mad, or sad, or frustrated. After all, she was a mere mortal, just like you and me. The lie she told herself is that it would be better tomorrow. Just get through today, and it will be better. Funny thing was, it wasn't always a lie. More often than not, it was the truth. After some time, she discovered she felt better when she didn't stay sad or mad. She felt better when she felt happy. She said it out loud like it was some great epiphany. When I feel positive, I feel better.

After that realization, she tried in earnest to look at things with a different outlook; she tried to find the positive in the negative. She still had good days and less-than-stellar days, but she didn't call them bad days anymore. Sometimes things went wrong, but she tried not to make that her focus. She would focus on what went right.

She realized that if the gremlin hadn't visited her, she might not have learned the art of appreciation and positivity. You see, when things are going perfectly fine, it's easy to overlook all the good stuff. It's easy to forget to appreciate the little things because there are so many big good things. When you slowly have things taken from you, you learn to appreciate what you have, what you've learned. When you're forced to slow down, you can look around and see all that you have left, rather than what's gone. On really good days, she doesn't notice what's gone. On other days, she grieves for what's gone. She gives herself permission to feel sad, but she doesn't give herself permission be sad. She feels there is a small but important distinction.

The Wizard's Potions

A Continuance of A Girl, A Goblin, and an Evil Spell

The Wizard's Potions

From time to time, the girl would see the wizard during her travels. She was never quite sure if she met up with him through happenstance or if he somehow preordained the meeting. She felt as though he chose when he would see her.

On occasion, he would offer new potions for her to partake.

One potion was meant to combat the bone-tiredness. The girl was so happy and relieved because it worked like a charm; for a while. She had many invincible days! Then, it stopped working. The wizard had told her that if the potion stopped working, she should stop taking it for a short while, and resume it in a few days. Sometimes that would restart the efficacy, the wizard told her.

That little trick worked for quite some time until the potion stopped working altogether. The girl asked if the wizard had changed the formulation, but he hadn't. He did contrive a new potion that was supposed to help fight the bone-tiredness, but that potion didn't work either. Once again, she got used to being bone-tired all the time.

The wizard offered up all sorts of potions. During one particularly rough spot, the wizard gave her a potion that was meant to dispel some of the worst manifestations of the spell. That potion lit a fire of rage inside the girl like none she had ever seen. She thanked the wizard very much, but told him she would not be taking that potion again.

Another potion he concocted was supposed to prevent the girl from feeling new sensations, but it made the girl sick in a different way. There were a few potions that belong in that category, actually.

The wizard would interview the girl, and try to produce new potions to help her with her wrong vision, fairy-dusted legs, the arms that weren't wet, the corset no one could see, and the bone-tiredness. The girl had developed new sensations, too, like headaches that didn't go away, balance problems, trouble speaking, and having trouble thinking.

The wizard did his best to develop new potions, but none seemed to help the girl. This bothered him greatly, for he was a very powerful wizard who was not at all accustomed to being powerless. He thought it was peculiar how the girl is the one who is under the spell, yet he is affected, too, except in a different way.

A Different Bubbly Girl with no Middle Name

Maybe you'll remember about a month ago I told you that when I went back to the neurologist she took me off of the Copaxone, and wanted me to start the Tecfidera? If you're interested, you can read about it here. Anyway, I finally heard back from Biogen (the manufacturer of Tecfidera) the other day.

Well, let me backtrack. About a week ago or so, I got a call from Biogen telling me that my insurance didn't approve Tecfidera, so I should call my neurologist to discuss different treatments. I called my neurologist who told me that Biogen doesn't do that over the phone, and I would probably be receiving a letter.

Ooooookay, but they called me. Never mind, what happens now?

The neurologist told me that they would appeal the decision, and not to worry. I'd be getting medicine one way or another. I said that it's the other way I'm concerned about. She laughed, but I wasn't entirely joking.

Now I'm waiting to hear back from either Biogen or my neurologist's office. My phone rings while I'm driving, so I don't answer (I don't have a Bluetooth- I need to get one). I listened to the voicemail, and she left her name and number. She was so-and-so from Biogen Support.

When I called back, there was no one by that name in that office. The person who answered the phone mentioned lots of other names that began with the same letter of the name I gave her. I was starting to doubt that I had the right name. The person who answered the phone said that she'd be happy to try and help me, though. I gave her all of my information. Several times. She couldn't find me in her system. At all, so was I sure I was calling the right place?

Grrr, well considering I dialed from my caller ID, I would think so.

The only thing I kept thinking was, "These are the people who are in charge of my drugs"?

We hung up, and I listened to the voicemail again. I did have the correct name. I called back and confidently asked to speak the person who called me. There was no one by that name anywhere. The person who answered the phone decided she could help me. I explained I'd just spent 10 minutes on the phone with someone who couldn't find me. She asked me if perhaps I could be found under my middle name? I told her that I don't have a middle name. She told me that she didn't have one, either. We bonded over that little factoid, and she looked in earnest to find me.

I don't know what she did, but she was finally able to locate me in their system. Perhaps there's a special file for people who don't have middle names, I don't know. Once she did have my information, she was quite bubbly when she told me that my initial copay would be two thousand eight hundred dollars, but after that, my copay would only be $30. Two thousand eight hundred something dollars.

“Okay, let's pretend I don't have two thousand eight hundred something dollars waiting to be spent on Tecfidera. What are my options?”

The bubbly girl proceeded to tell me that there is a patient assistance program, and she would be happy to connect me to that department. Yes, let's talk to that department, please. I thanked the bubbly girl with no middle name, and she transferred me to the patient assistance department. And, I didn't get disconnected! Bonus!

An extremely cordial yet robotic person named Kim* went through the qualifications with me. She asked me some questions, and within minutes, I was approved for a ZERO dollar copay program. In the span of about 10 minutes, my payment went from almost $3000 to zero dollars!

Sidebar- if a pharmaceutical company can offer a zero dollar copay to me, why do other people have to pay thousands? Why do insurance companies have to pay thousands? Why can't pharmaceutical companies just price the drugs reasonably to start with? Don't tell me it's to fund R&D. Even with all of the R&D that drug companies do, they still manage to squeak out billions in profits. Copaxone is still $5000 a month, and that's been around for over twenty years.

Okay, I'm off of my soapbox now; sorry about that.

I have to return a call to Biogen to get my pharmacy ID number so that I can call the pharmacy and make sure that they are processing my Tecfidera. That's on my agenda for today.

One thing that you can always count on with me, is that so many things turn into an adventure with me. And that makes for some interesting stories. I mean, if everything had gone smoothly, I wouldn't really have a blog entry, now would I?

*Not her real name