And Then There's This...

Life is a struggle. For all of us. Every single day.

I almost posted to Facebook yesterday that it was one year to the date that I was diagnosed with Mixed Connective Tissue Disorder (MCTD), which is something that I struggle with every day.. But the more I thought about it, the more I decided not to talk about it...not on that one year mark. I'll explain why in a moment.

It's difficult for someone like me who happens to remember the dates of just about everything that ever happened in my past. Drives my husband Joel crazy. He knows all the "anniversaries" of past events that I remember and, bless him, he keeps them in a Google calendar so he can always empathize, sympathize, or celebrate each of them with me since he could never remember them all on his own. I don't live in the past, but where I've been and all I've been through help define who I am now. Some memories are wonderful, some...not so much. Sometimes it's simply a measure of how far I've come or that I've finally let go of something that has been holding me back. Remembering where you've been is important in realizing where you are now, and also looking forward to where you're going.

I was devastated last summer when I went to my doctor, thinking my lack of energy and constant achy muscles could be addressed with some thyroid meds and a frank reminder of my age (I have one of those milestone birthdays coming up in a few days). Instead, my sweet doctor (and despite the fact that I absolutely hate going to the doctor...any doctor) went through the results of my blood work with me one page at a time. "Your cholesterol is excellent, you have no signs of heart disease, liver and kidneys look good, your glucose is perfect. These pages of your blood work are worthy of a picture frame."

So I sat there thinking, "then why do I feel so horrible all the time?" I had begun to think it was all in my imagination. Or that maybe everyone else was just growing older more gracefully than I was.

And then she came to the very last page. I should have known something was up when they had taken so many vials of blood, but I trust my physician and her acute sense of people's problems, not to mention her awesome women's intuition, so I was sure she had my best interests at heart. And she did, I just didn't like the results.

"And then there's this."

She handed me the last page which bore the results of a test I was certain no doctor had ever ran on me. It was an Antinuclear Antibody (ANA) test. And it was positive. When you have an autoimmune disorder, your immune system  mistakes healthy cells for intruders and attacks them. I blanked out for a moment because I'm a bit prone to panic. That's one of the reasons I love Joel so much - he knows that, and always offers to go to the doctor with me if I want him to. I remember hearing words, but I mentally sort of shut down for a minute while she continued to talk. When I came back around, I still saw her there in front of me, telling me that it would be okay. It didn't really hit me until I got home and read more about MCTD just what she had said. Of all the years I had suspected problems beyond what any doctor wanted to help me find out about myself, she was finally the one who rescued me. No, I didn't like what she said, but she did rescue me because she finally gave me an answer. An answer to all my years of questions about so many physical problems I'd had. And it doesn't sound like a big deal, but when you have doctors turn you away and tell you that "you're overreacting" or "there's nothing wrong with you" it tends to break you down over time.

So I did exactly what Joel often tells me not to do...I started researching on the internet. The web is a wonderful thing...at times. But Joel will be the first to tell you that it isn't always the best place to go. And he has a Ph.D. in computer science. I read and read and read, but at least I had an answer this time. It wasn't like I was trying to diagnose myself like I'd been trying to do for years because no doctor had been able to. I had an explanation, and honestly, it was rather liberating. After years of wondering, I could finally address it head on. I could learn what to do and what not to do. I could learn which foods were good for me and which foods aggravated my condition. I didn't have to worry and wonder anymore, just learn. Many people aren't familiar with MCTD, so if you aren't bored out of your mind by now, I'll tell you a little about it.

It's actually more of an overlap disease because it contains signs and symptoms of a combination of disorders — mainly lupus, scleroderma and polymyositis. The symptoms of the separate diseases usually happen over several years' time and don't appear all at once, often making diagnosis complicated  In later stages, the lungs, heart and kidneys  may be affected or possibly fail, so my doctor keeps constant watch on my organs. There is fatigue, fever, Raynaud's phenomenon where fingers feel cold or numb, swollen hands, and, the worst for me, muscle and joint pain. There is no known risk factor, no known cause, and unfortunately, no cure. But, now that we know, we can keep a watch on my organs and manage any other medications that can help keep me healthy. Many people with MCTD often suffer from depression because of their aches and pains and inability to do what they want and need to do. And that's why I chose not to mention all this yesterday.

When the news of Robin Williams' death came out, so many people thought they had all the answers. Some even condemned him for taking his own life. The truth is, unless you've ever experienced those feelings, you have no idea what it's like. I've never wanted to take my own life, but I've always been an anxious sort of person, and panicky, and sometimes easily depressed. And it is easy to be down about a condition like this, but I realized yesterday that I'm very fortunate. I have a doctor who took all my questions and finally, FINALLY, turned them into answers. And she makes sure that I have whatever I need to live a healthy life to the best of my ability without suffering more than necessary. MCTD is sometimes referred to as one of the "invisible diseases." People who have it don't look like they're sick, so I might look okay on the outside, and really feel sore and miserable inside. But I have a physician and a family that watch out for me, and help care for me. I have help for a disease that does depress me, but I'm living a good life. I'm finally living out my dream of writing, and other than days when my fingers are too tired to keep up with the ideas rapidly running through my head, I can type without much pain.

 So rather than look at yesterday as the big one year mark since my diagnosis and feel burdened, I chose to be happy. Thankfully, deep down, I am a naturally happen person, despite all I've been through and all that I am still going through. At least now I have answers. I have a wonderful doctor. I have a loving family, gracious and caring friends, and readers who enjoy my work. It's not always easy to see things that way, but when you notice someone else who could no longer deal with the sadness that life often brings, it makes you appreciate all the good that we often miss. I couldn't make it if it weren't for all the love I feel from those around me.

Life is a struggle. For all of us. Every single day. Take the time to give a hug, or a compliment, or a kind word, or even a pat on the back to someone near you. We all need it, we all want it. And you never know when that kindness might just be the thing that keeps someone from doing the unthinkable.

The Papers of My Past

I admit it...I suck at blogging. I don't mean to, and perhaps years ago...before I rediscovered the joy of writing and finally publishing...I might have rambled on about most anything on a blog. Now that I'm actually writing the way I always wanted to and sharing it with others, I suppose I've reserved my words more carefully. If I can come up with precious words to share, I want to make them part of my books.

But today, I went through many years of papers and journals that I've been keeping since I was a young girl, and I simply had to share a few thoughts. Those papers and journals mean the world to me, and I actually panicked at first because I couldn't remember where I placed them after looking at them last. It would be like losing part of my soul to lose those books of my most personal thoughts and secrets.

I've been telling people since publishing my first book less than a year ago that I'd been writing since I was 9. We remember certain things like that, and we repeat them over and over, but I honestly had forgotten just what I did that started it all at the age of 9. Today while thumbing through these priceless papers of my past, I found the answer.

It was hidden inside a homework assignment I'd saved from high school, dated September 12, 1980 and only labeled "2nd period." The paper was entitled, "Journalism and Me" and described why I loved writing, how I came to love it, and what my plans were to use it in the future. I tell my own story of how I began to write...and thank goodness, because the actual way it happened was something I'd completely forgotten. After re-reading it today, I'll never allow myself to forget it again. This is an excerpt from my paper about how I began writing:

"A nine year-old girl sits in her school desk on a Monday morning and is told by her teacher to begin working on a penmanship assignment. A minimum of 32 words were required to be written, either copied from a textbook or made into the form of a poem by the student. The youngster had become irritated with simply copying words from a book, she so began writing her own choice of words and formed them into poetry. She liked the way her selection of words sounded together, and from then on, she wrote a poem every day of the week for her writing assignment. Her teacher became very complimentary of her work and persuaded her to enter her writing in an upcoming literary contest that was to be sponsored by the school. The young girl did, and won top honors in her division. This made her very proud, and also made her decide to carry out this new-found talent to its fullest extent. This little girl was me."

Of course now that I read that, the memories of how it all happened flood back. Even then, I was bored with standard assignments and copying words just for the exercise of improving my penmanship. And so my love of writing and poetry and connecting words together was born. It never left me, no matter what I did. I have thousands of pieces of paper where I've written about a special day, a person I randomly met, a street I passed by, or a date I went on. Almost every little thing I did became something to write about. And then, the unthinkable happened...I stopped writing altogether.

It seemed normal at first. I wondered if perhaps if it might have just been a way to express thoughts and hopes and dreams, and that it was time to put all that aside and be an adult. I tried to write again over the years, but the words were so forced and felt so unnatural that I felt defeated each time I made an attempt. My life seemed to have moved on in another direction and I believed that my writing would forever be something in my past.

In those numerous scraps of saved papers and journal pages, I found countless entries that began this way:

"I wish I'd never stopped writing."
"My pen trembles now as it touches the paper because I can't think of anything to say."
"I vow to start writing again."

And so those and many others came and went, and yet all along, the words were still building up inside me. They were dying to come out, and I couldn't seem to figure out how to make that happen. I'd never shown my work to anyone really, other than what I turned in for assignments or wrote for student newspapers. Once or twice I gave a poem to someone as a gift, but it was with the utmost promise that it was only for their eyes. For the most part, stacks of writing that no one had ever seen turned more and more yellow day by day. Sadly, I realized that, in my late forties, I had given up on the very thing I thought I would build my life upon.

Then one day in 2012, after the last of my four children had graduated from high school and begun college, after my husband's career was stable and his PhD was completed, I was moved to write a paragraph. I studied that paragraph for almost two months, and recited it to myself over and over. It became my inspiration for my first published novel, and it was from that paragraph that Rose was born. That paragraph is buried deep within the book now, not as the beginning of a chapter or anything that might stand out to anyone else, but yet a paragraph that changed my life. A paragraph that made me feel it was finally time to share...finally time to do what I always meant to do, just like I did when I was 9. Put together a selection of words in a form that I thought sounded good together. If I could do it at 9, I could still do it then at almost 49.

So after two published books now, I am still amazed at how long I waited. Some days I lament all the lost years, all the chances I could have taken, but that would only waste more time. Yes, I reserve my words carefully now, but after looking back at the papers of my past, I could only hope that maybe someone would understand my message now. That dream you had or still have, that thing you meant to do...whatever it is...do it! It's not too late. I waited almost 40 years from first discovering my love for writing to take a chance on my dream.

Grateful for each saved piece of paper from my past that never let me forget what I promised myself I would do one day. And sweet is the knowledge that I saw it to fruition.

Dream on, friends...dream on.