Wednesday, March 30, 2016

My Wish on this World Bipolar Day 2016

My wish this year is simple: better treatments, more affordably priced, and available to all who need them.

That's a tall order, I know.

I'm one of the lucky ones. I can afford, thanks to insurance and my husband's medical savings plan through his job, to get most of the medication that I need. I say most because there are newer treatments that my doctor would love to try me on (I'm struggling with my old med cocktail lately, it doesn't seem to be working any more even with dose increases, which increase side effects even if they don't help your mixed state...)

She had some samples from the manufacturer, but said plainly she was reluctant to start me on them because the medication would cost 1000.00 per month, out of pocket, because it's not covered by my Medicare Part D insurance plan.

Because I have a Medicare Part D insurance plan, I am ineligible for discount programs from the manufacturers of the medications. Why this should be I have no idea; it seems to me that if you're on Medicare you should need the discount more, not less. But it doesn't matter. Because of that, I can't get the costs down.

So whether or not the newer meds would help me remains a mystery for now; until their price comes down, I won't be able to find out.

It's terrifying, how many meds my insurance company has eliminated from its formulary this year. Including the brand name drug of my mainstay in my treatment; so far, the generic does not seem to be working as well as the brand name did, even at a higher dose.

It leaves me wondering what will become of me if time doesn't work with the latest med adjustment to straighten me out. If the depression keeps gaining on me; if I keep sleeping all day because one med makes me exhausted even though another makes me edgy.

This is the shallowest thing I could post as far as side effects from my Bipolar treatment go, but it's more than just an issue of appearance and losing your self-image.

I've gained a lot of weight in the almost five years since I began my journey on Bipolar treatment, mostly, sadly, because I couldn't continue on Lithium, which didn't seem to impact my weight.

I'm not even on the meds considered the worst offenders for weight gain (though, those are the ones that my insurance company would rather I take, the ones that are tier 1 and 2 meds) still, I've gained and weigh more than I ever have in my life, even more than when I was 9 months pregnant with my daughter.

Adjusting my diet does not seem to help. I am limited from working out because of degenerative disc disease and other joint problems from a rare genetic syndrome.

In other words, I'm toast when it comes to these meds and weight gain.

The weight gain isn't just humiliation on top of all the other suffering that Bipolar already brings, it puts me at a greater risk for serious health problems, specifically Diabetes, which can be brought on by this classification of medications.

I am taking multiple meds in that classification. And it scares me. A lot.

This is what I looked like before I was (correctly, at last) diagnosed with Bipolar and began treatment:

This is what I look like today:

It isn't the years that have aged me so much. It's the medication (and yes, the illnesses themselves.) But the weight gain is just insult to injury and I worry for my future-- will I add Diabetes to the list of things that I have to deal with because of the fact that these treatments are the only options available that my body can tolerate?

I've been on so many medications since being diagnosed, and failed or been allergic/intolerant of most, that I'm kind of stuck right now with what I've got, even though it really doesn't feel like its working any more.

All the while, in my doctor's office, sits samples of a new med which may very well be able to help me. That has a better side effect profile than the meds I'm currently on.

It could be The Answer.

And I can't have it.

Because of money.

Like I said, I'm lucky that I can afford any treatment at all; right now the copay on one of my meds cost 415 dollars to fill at the pharmacy. I'm lucky that supply will last two months.

If it works. If it helps at all. If it's even worth taking any more.

So again, my wish for everyone who suffers not only mental illness but all illnesses on this World Bipolar Day: affordable medications. More research. Don't just medicate us and cast us into a corner once a drug goes generic and we don't interest you any more, Big Pharma.

Keep working on better treatments, and I promise you, anyone who possibly can will be so grateful for them, that we would very, very gladly pay all we can for them.


Monday, March 28, 2016

Project Tomorrow (Or, The Battle Between Art and Medication)

EPCOT (the enormous theme park in Walt Disney World in Florida) inspires me.

Don’t get me wrong, the kid in me will always love the Magic Kingdom. It is the happy place for dreamers from all over the world.

But I will never forget first visiting EPCOT as an eleven year old girl, when it was brand new.

It ignited something in my imagination (and not just because of the One Little Spark song Figment the dragon sings) that remains unique to the place. It’s something I’ve never found anywhere else, and when I’m especially low or uninspired, EPCOT beckons me home.

Right now I find my creative reserves are at what I’d call an all-time low. The events of the past few years have all caught up with me (as life tends to do when you try to outrun it) and my brain is working overtime trying to process it all: emotions, thoughts, impressions, losses and dreams now come and gone.

So I’m going inside my head today and I’m thinking back to my last trip to EPCOT, which was at the beginning of March, for the start of the annual Flower and Garden Festival.

This was but the latest example of me ‘running away from home’ as it were; planning the trip the day before I left. I was desperate to escape the snow and cold; desperate to walk and see how far my legs could go (which didn’t turn out to be as far as I’d have liked. I wrote about that in another post.) Desperate to escape the walls closing in around me.

On my last day there, I drove my rented scooter past a sign I’ve seen hundreds of times in my life; and it really struck me.

This is the sign:

I found myself wondering what my own personal “Project Tomorrow” will be. Lately I’ve been asking myself if writing (and thinking of myself as primarily a writer) hasn’t just been a really long phase I’ve been going through.

Okay, so a forty year phase, but still, a phase nonetheless.

I’ve been writing all my life, but with singular focus for about twenty years now, and I find myself wondering, as I approach my 45th birthday in six weeks or so, what I’ll do for an encore.

I’m at the point of total frustration and misery with writing itself; especially when I even think about trying to write another novel. The reason for that is clear to me: it’s that I haven’t been grabbed by THE idea yet; the one that will take hold of me and refuse to let go the way that GODSPEED did. The way that WISHING CROSS STATION did.

As much as I love my other books (and I do, each has a special place in my heart) those two are what I consider the beginning and the end of what I am able to do as a writer; the best I know how to do.

I know it’s a learning process. I know that it’s supposed to always continue, a writer honing their craft and going on and on and on with it, chasing, as it’s been said, inspiration with a club.

That’s just not the way my brain works.

Though the honest truth is, my brain hasn’t been working well at much of anything lately. More med adjustments are still being, well, adjusted to, and I find myself lost, looking for that project tomorrow.

Do I get out the old Yamaha keyboard and go back to trying to make music? Do I get out the pen and paper and just write whatever poetry pops into my head, lock it away, and call it a day? Do I try to paint even though the canvas seems to erase every stroke I make with my brush as I make it, then twist it into something I hadn’t intended at all?

When do I figure out how to blog about anything besides my artistic struggles?

Maybe I should only blog when I figure out how to talk about something other than my artistic struggles.

You don’t want to hear me talk about marketing (and goodness knows I don’t want to hear me talk about marketing anymore either) and I don’t have any new creative material to offer at the moment.

Maybe I’m just trying to work it all through in my head by sharing this, and maybe I’m trying to let someone else who may be struggling out there know they’re not alone.

I’m not sure what the purpose of this post is, besides the idea that there has to be some kind of project tomorrow in my life.

There has to be something I can still contribute, creatively.

Though I wonder, sometimes. I seriously wonder.

I've often said that I’d give up all my artistic pursuits and accept treatment for Bipolar, if it could make me “normal”.

Almost five years later, I’m asking myself, is this normal?

Is this what a normal, non-creative life feels like?

It feels like trying to wear a dress several sizes too small. I feel like it is cutting off my circulation, my ability to breathe, and all I can think to do is tear at it until the zipper breaks and the fabric falls away and I’m free of it again at last.

(Maybe this is why so many creatives live in Yoga pants. Not sure. Fear of confining clothing?)

Anyway, I think of the movie Tangled and Flynn Ryder’s advice to Rapunzel that if her dreams came true (which mine did, I’ve been published as a poet, a novelist, and an artist) then it was time to find a new dream.

A new dream.

Project Tomorrow.

There has to be some inspiration left, some small spark of creative life left in me yet. Otherwise, I don’t know how I’ll cope.

This is what has become the constant struggle: between accepting what treatment for Bipolar does to me vs. what it gives to the people in my life, and the protection from myself that it gives me.

Because of Bipolar I have the ability to be my own worst enemy, and the greatest danger to my existence.

When I take the meds like I’m supposed to, that gets better, or, at least is numbed down into a manageable thing, a lot of the time.

Even if it leaves me feeling empty, at least I’m still here to feel empty. Do you see what I’m saying?

Maybe, in the end, that’s what this post is really about. It’s about grieving for the loss of absolute creative freedom and inspiration that a life before meds offered me. It’s about accepting the fact that I have to find a new normal with every adjustment of my neuro-chemistry.

I’ve been through so many meds, so many dose adjustments. So. Much.

It’s no wonder that I’m tired.

They say you can’t pour from an empty vessel. Maybe that’s my Project Tomorrow: to fill myself back up until I spill over; onto the canvas, onto the written page, into song.

Maybe the way to find my new dream is by taking the pressure off to have a dream at all for a while, and just allow myself to exist in the now that is.

To read. To listen to music. To think. To daydream.

To imagine that I will find my creative self again, somewhere, buried beneath the layers of medicines and psychosis and vicious Bipolar 1 cycles.

To try to find out if, after all this time and all that’s happened, I’m still me, after all.

Only time will tell.

Thursday, March 24, 2016

A Writer's Tale (OR:That Time I Put My Soul Into a Sad, Sweet Little Book and (Almost) No One Noticed)

(First a note: To all who have read and commented on/reviewed WISHING CROSS STATION to date, you have my heart and my gratitude. Thank you. xoxo) 

Now, as many such stories start, so begins this one:

Once upon a time, I poured my heart and soul into a little book that I was totally obsessed with.

It was a story about love and loss and trains and time travel, and I researched all the things and I had an amazing editor and proofreader and cover designer and publishing team – my dream team.

We released the little book out into the world and a sad thing happened: it didn’t truly find its audience.

Well, at least it hasn’t yet.

It was released in the summertime (earlier than planned because the book is actually set near Christmas) and maybe that did something to throw readers off. I don’t know.

Maybe the fact that the book was described first as ‘dark’ then as ‘bittersweet’ (I was actually told it wasn’t ‘dark enough’ in the view of some to be called ‘dark’ so we dropped the word from the description.)

The truth is that it’s a sad little book in the end. But that hasn’t stopped many a book before it from finding its audience; an audience that doesn’t mind ending a book with a good cry, and can even see the value in reading such a book from time to time. An audience that revels in the beauty of an imperfect love story.

I’m lucky, though. There have been those who’ve read it and found in it what I hoped they would; an escape from reality for a little while, and something, a character, a scene, a moment, that stayed with them.

Others picked the book up from Netgalley not really interested in the subject matter, but because they liked the cover, and sadly seemed disappointed when the book wasn’t what they imagined it’d be.

I’ve tried putting this book into KDP Select (for those who are not writers out there, that’s an exclusive to Amazon deal where you get to offer the book for a discounted price or for free for up to five days out of every 90. I’ve chosen the free option; twice so far.) I’ve tried talking about it, not talking about it, hoping others would talk about it instead so it didn’t feel like I was constantly selling, and then finally resolving in my heart that it may take a long time for this little book to find more of its audience.

Then there’s the scary realization that maybe it never will.

What does a writer do when they have put their all into a book and the world at large doesn’t notice?

They hold on to hope. They don’t give up on the little book they love, that’s for sure. They keep it out there, somewhere in the periphery at least of what they do online; without pushing it into people’s faces. They link it to their profiles, they show off the (gorgeous) cover whenever they can.

(Occasionally, they might even risk blogging about it.)

They remember their hero, Keigan, and how he struggles mightily to find his place in a world he is so out of place in.

That’s how I feel as a writer, more often than not; out of my time. That what I write is out of place with what is currently selling. The numbers support these feelings. I don’t write to the market of what is currently selling (though in truth by the time you try to chase a trend, it’s almost always too late to catch it.)

After analyzing it long and hard, I don’t think the reason it hasn’t been noticed is it’s because what I wrote is bad. I’ve had enough feedback from people who know a thing or two about books and writing on this one to know that it, like GODSPEED, precisely hits the marks I was aiming for as a writer when I wrote it.

With the help of those people, this little book is the best that it can possibly be. I had the best possible editor, proofreader, cover artist, book manager, and publisher I could have asked for on this project because they let it be what it was. They enhanced it, they strengthened it, tightened it up and polished it like a gem, but above all they let Keigan’s voice, my voice as he told his story to me, come through, and I will forever be grateful for that.

I’m wondering just what it takes anymore for a little book to spark and catch fire, in the big, wet world of soggy paper that it finds itself in the middle of. Volume after volume dropped on top of the pile day by day, supply far exceeding demand, muffling its little, modest voice and preventing people from knowing it is out there.

So I’m just here to say, my little book is out there, waiting for the right readers to find it.

It’s called WISHING CROSS STATION, and you can read the first chapter in its entirety here. You can read even more of it using Amazon’s “Look Inside” feature.

It’s my hope that maybe you will consider reading those samples, especially if you’re a hopeless romantic who doesn’t always have to have a shiny happy ending to a story to feel the depth of the love between the characters in it.

Not everyone in life gets a happy ending. That is a fact a lot of readers read romance novels to escape, and that’s why it shouldn’t be viewed as a romance in the traditional sense.

Love, however, is still the biggest message WISHING CROSS STATION speaks to. That whatever the outcome, loving someone, for one pure moment in time, is worth it; because it can change not only who you are but where you’re going and how you live the rest of your life.

Love’s power to transform is a lot more important to the story than the time travel or any other element of the story. It is the story.

In the end, love is the most powerful force of all, even if it cannot always conquer all.

It’s just waiting to sweep you away.

Step aboard the Aurelia Belle and take a journey you won’t soon forget.

My little book is out there, still setting off sparks in the big, wide world.

And I’m still here, hoping one of them will catch. 

Once more before I go I must thank everyone who has read, commented on, and reviewed WISHING CROSS STATION. I am so grateful to you, one and all, and always will be. Thank you again.