"There's a bit of magic in everything, and some loss to even things out." -Lou Reed

Sunday, February 20, 2011

Just Write

I was looking back through some archived blog posts tonight, searching for inspiration actually. I love looking back one year from this day to see where I was, two years, etc—imagining where I was at that moment, what I couldn’t then see ahead of me—all with some amazing clarity, since I chose to write down so much of what I was feeling.

Before blogging, I was able to do that via my journals, but I always grew impatient when writing just for myself and often gave a shortened version of what I was dealing with, going through or experiencing at the time. I would write in a form of shorthand, knowing I understood what I was referring to and annotating.

For a long time, I had only seven followers on my blog- I remember all of their names even now. But, I was writing FOR someone; sharing things so personal that I would normally save only for my journal. But, I had to articulate things, make someone understand my warped thinking—in a sense—translate what was going on inside my head and heart for someone else to understand.

And it changed and improved my writing—actually made me a better writer. And for as long as I can remember, that is all I have wanted to be. About five years ago, I worked through a book that was supposed to help you map out your dreams, step by step, following a five year plan to get you to the place you wanted to be. What I liked about it was that five years didn’t seem unrealistic or lofty. It seemed sensible and levelheaded. I can’t count how many times I have picked up books like “Write a Novel in One Month!”, or “Quit your Job Today!”. All of that seemed so tempting, and the book flaps made it seem truly possible—even easy-- to turn a page from my current life and step into the one I really wanted. I have read stories of artists and writers who have done those things- with great success. But to me, especially being on my own and supporting myself, it was only a pipe dream, maybe a possibility if I won the lottery or came into an inheritance from some unknown relative.

So, the five year plan seemed doable. And long story short, if I had followed course, I would be working as a full-time writer right now. Maybe not a rich or famous one, but piecing my life together by one or more sources, making my living by being paid to write. And of course, hopefully making that novel I have been working on for oh, FOREVER, actually ready to submit to someone.

And then, the rest of my life took shape, blossomed actually. Nowhere in my five year plan did I see myself married, happy and living a five minute walk from the ocean. It was so clear to me looking back at the making of this five year plan, that I had undoubtedly given up on other things happening for me, things that I wanted, but just didn’t think were going to become a reality. I am so, so thankful that I was wrong. I am in a place now that brings me such peace with who I am, and with all of my personal struggles. I am loved by someone who knows everything about me, who I am completely myself with, who knows my deepest flaws, and my hidden dreams, and sees me as I have wanted to be seen. I am with someone who has made my life. He also wants me to have everything I want; wants desperately for my dreams to come true.

So, this is a great place to be. I wouldn’t change a thing. I have realized, however, that one of the reasons I was such a prolific writer for the last few years (even if it was only for seven people), was because I was on my own so much—quite frankly—I had the time. I had more time than I knew what to do with. More time than I wanted alone. And loneliness, for me, also breeds creativity. I have a new normal now. From this place of happiness, and a full life of real experiences, dinners with my husband, walks on the beach with our dog, time with our friends, weekend trips and plans—I have to carve out time to write—and at times, it seems almost selfish. If I say I need to write, my sweet husband will drop everything and rearrange time for me to have whatever I need. But, I have never been one to “plan” when I write. Things come to me, and I have to (like now at 5:28am for instance) strike while the iron is hot.

So, in looking back at my blog, and in seeing my tote bag full of the current Writer’s Market and a few (very dated) writer’s magazines, I realize I haven’t been writing nearly as much as I did a year ago, and not nearly as much as I want to--and definitely not enough to get me anywhere near my five year plan. And yesterday morning, when I woke up and looked across the room at my laptop and my red notebook of ideas I keep with me all the time, I thought—Why am I pressuring myself? No one is judging me; no one is giving me a deadline, I don’t HAVE to do this.

And then, this quote came across my feed on twitter: “Real writers are those who want to write, need to write, have to write.”- Robert Penn Warren.

I stared at those words, and read them again slowly and thought—yes. It almost isn’t a choice. No matter what success I achieve, no matter what the results, I want to write, need to write, have to write. It is as much a part of me as anything else.

I love how one quote can put words to my heart, and motivate me…one simple string of words that lights a fire somehow. I am a quote collector, with an arrangement of sticky notes with quotes meaningful to me that decorate my office and home. And every now and then, one comes along at just the right moment.

A friend sent me a note a few weeks ago reminding me that I needed to JUST WRITE. Stop worrying about if it was worthy, or perfect, or terribly interesting. Just write- put it out there. I DO worry about blog posts, especially, wanting the content to mean something, be true to myself, to give that feeling that I love—that I get when I read other blogger’s posts.

But, she is right-I need to JUST WRITE. It is really how I got started in blogging. Writing about whatever I wanted, truly thinking out loud. So, here’s to finding my way back to that place, in this wonderful “new normal”, where I live now, that five years ago wasn’t even in the plan.


Thursday, February 3, 2011

Many, Many Migraines and Finally...Hope

For sufferers of chronic migraines, it is strange how we have to accept that migraines are part of our lives, stealing hours from us, robbing us of time and missed family events, celebrations, and special moments. Being a migraine sufferer has become part of the definition of who I am. Anyone who knows me, loves me, is a friend to me, or a coworker might describe me in several ways, but would probably add…”she has these terrible migraines.”

I have them so often, sometimes 4-5 times a week. I was diagnosed with cluster migraines about six years ago after going to doctor after doctor, then neurologists, and finally to a specialty headache clinic in Washington, DC. I had every test run imaginable, MRIs, CT Scans, allergy tests, nutritional evaluations, eye tests, dental tests…it seemed to take forever. And then the results came back and there was nothing determined as the cause of my migraines, other than heredity—as my grandmother and mother both suffered with them, though in different degrees.

I have had them since middle school, but back in the beginning, I might have one or two a year, and they were serious headaches, but nothing close to what I have now. As the years passed, the frequency increased, and by the time I was in college, I was having several a month, and was usually in the ER on a fairly regular basis.

Year after year, things grew worse, and then miraculously I would get a reprieve and have only one a week, and the pain became more manageable. Also, the drugs used to treat migraines began advancing, and it felt like a miracle when I could take one pill (that wasn’t a narcotic) and feel my headache float away.

Back when I began having them, so little was known about migraines, and over the years, countless people have marveled over the suffering just a “headache” could cause. Unless someone had direct experience with migraines, or had a loved one with them, it was hard to imagine a headache being that bad.

I have been on every identified preventative medication for migraines, have tried any dietary restrictions rumored to have work, have scoured the health food stores for magic vitamins or supplements. I have read as many books on migraines and possible “cures” trying anything and everything with no success. About three years ago I just settled into the fact that this was my life, I had tried everything, and I was just going to have to manage.

And I have- to an extent. As I write this, I am on day 14 of a migraine. It has subsided after I took pain medication, then come back again and again. I have found ways to manage to work through pain and while taking whatever medication I have to. As I said before, it has just become part of my daily routine, and a part of who I am.

I had read and heard about Botox being used as a treatment for migraines. I started really looking into it last year, and the more I heard the more hopeful I became. When we moved and I found a new neurologist, he was amazed at the range of medications that I had tried and failed to have results with. He believed Botox was the answer. I was happy to have something new to try; something that had proven results with even the worst migraine suffers. For the first time in awhile, I felt hope.

And then, my insurance denied the treatment.

Botox was approved as a treatment for migraines by the FDA in January of this year. This isn’t some crazy experiment; people’s lives have been changed by this. I spent weeks arguing with my insurance company and being given one excuse after another, with firm and final answers that they wouldn’t pay for the treatment.

To say I was devastated is an understatement. I was so angry that something that could possibly help, that was a proven and approved treatment, was being denied to me. I inquired about paying out of pocket, and the cost ran about $2000. It wasn’t in our price range, especially since it is a repeated treatment that you need to do about every three months.

I had an appointment this week with my neurologist to try and figure out what to do next. The nurse came in ahead of him and said I needed to fill out some paperwork. Then she smiled and said, “We have some news. Dr. M can pick three patients to treat with Botox for FREE…and you are one of them!” I was in tears. I squealed, a little loudly. I felt as if I had won the lottery.

Basically, Botox is working with patients that have been denied by their insurance companies for treatment for migraines. They do the first round free, and then submit all the records during and after treatment to the insurance companies to prove the treatment is working. Once a successful personal treatment plan is issued to my insurance company, there is a higher likelihood that they will approve ongoing treatment after that.

I can honestly say that I think of my grandmother every single time I have a migraine. My mother has told me stories of how my grandmother would get what she called “sick headaches” and lay in bed for 5-6 days in agonizing pain. No one seemed to know what to do, and in the tiny, rural place she lived, there just wasn’t access to great medical care. She basically just had to suffer through them until they had run their course. I cannot imagine. The pain I have had at times in the ER, just waiting a few hours until they give me painkillers has seemed unbearable. To go for days and days like that…I don’t know how she did it.

So, in about 10 hours, I am headed to my neurologist’s office for the injections. There are 31 of them—most in my head, some in my neck and shoulders. I am a big baby about needles, but this is so different. I am almost too excited to sleep. For the first time since the early 1980’s there is a good chance I could go three months without a migraine, or at least with a significant decrease in the number of them. I am so hopeful, and feel so fortunate that my doctor made this happen for me.

I know so many migraine sufferers, and several of my friends are waiting to see the outcome and hoping for good results so they can consider this treatment. I will post the continued results here. And if you have good insurance and are a chronic migraine sufferer, look into Botox for migraines.

For information on the FDA's approval of Botox treatment for migraines, click here.
Artwork by .



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