A 3-Hour Nap

Just a quick shout-out to holidays that fall in the middle of the week. Thanks for making me feel like I’m going through Sunday all over again. The laziness. The dread of the following day of work. The one perk is that there are only TWO more days of work to follow this “Sunday.”

Husband and I took a 3-hour nap today. While awesome, I have a feeling I won’t be sleeping well tonight and that’s a bummer. I love sleep. LOVE IT.

On the up-side, I woke up feeling like I could sit down and write another 700 page novel. Like, in one afternoon. Instead, I added a page to this blog about the writing project *d* and I are working on. Check it out! Join in!  It’ll make ya feel gooood.

Not like that. Unless writing letters gets your motor running. Wait…that might be why I’m doing this…hmmmm.

At any rate, it’s a feel-good project about helping others feel good. What’s better than that?

~L~

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Goofy Grin

I’ve been ridiculously stressed, well, my whole life, but more than usual the last several months. I’ve also done my fair share of berating myself for not keeping up with this blog or any other form of writing. I kick myself about daily. I’ve had my hands full and I know that’s not an excuse. The only viable excuse would be if I were dead, or in a coma. Though I feel like I’m ready to slip into a coma on a regular basis due to a terrible quality and quantity of sleep due to allergies that never let up, I am not actually incapacitate enough to defend not typing even the smallest paragraph. I need to take time away from my hand-wringing and perfecting my resting-bitch-face, to spill onto paper what’s sloshing around in my head. There’s a visual.

Anyway, the point of this post is not to point out my short-comings but rather why I’m lucky. It’s because I have someone in my life that has it worse than I could imagine having it and she still puts me ahead of herself. *d* surprised me with flowers at work today. I read the note and got a goofy grin on my face–much like the one on the smiley face balloon attached to the bouquet–that I couldn’t shake well into the evening. It’s these sorts of things that remind me that I am loved and thought highly of even when I don’t feel that way about myself. I’m reminded how lucky I am. There is someone who thinks I’m awesome even when I’m kicking my own ass for being what I feel is lazy. I love you, too, *d*. The flowers are beautiful and you are too!

See? This guy gets it!
See? This guy gets it!

~L~

Journal of Emotions

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NEW ENTRY

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I am overwhelmed. If there was a day I am full of emotion, it’s today. Life has been too much and I am having a hard time taking it all in. Everything from health to finances has been difficult. I often wonder why it isn’t just one problem we have to deal with, but a mountain of them. Yesterday I went to the pain management doctor and he about came out of his chair when I told him my Rheumatologist was going to keep me on one medication and add another. He didn’t like the idea of me being on both simultaneously. It gave me a lot to ponder as I knew something wasn’t “right” with me.

This feeling is the same one I had before my last flare. Maybe the thought of another flare put me in a foul mood, I don’t know, but I do know the mood is lingering. I keep thinking I’m more tired than usual but that would not explain the lingering rain cloud over my head. I tried hard today to be positive, until this……
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……. a flat tire…..

We just started a layaway for our kid’s Christmas and now I wonder if we will be able to pay it off at the rate we are going.

I made a phone call to the pharmacy on Tuesday. I asked how much I’d be paying out of pocket for my medications once my high deductible insurance turned over. We recently paid off our van, but between the increase in our mortgage payment due to tax increases and my medication, we will see no difference in our monthly budget. We will still be broke. I looked forward to a tax refund but that will be paying for our mountain of medical debt and spacers for my oldest son. We just can’t seem to get ahead. I know we aren’t alone. Many people struggle to get by from month to month, but I wish this was the only thing that kept me up at night.

Sometimes I lie awake listening for my son in the next room. I worry about him seizing more than I admit. He was approved to get an Embrace watch but they keep pushing the date back for it’s arrival. It’s supposed to alert us to a seizure by using an app on our phone. I will breathe a sigh of relief when it comes for many reasons, but nighttime seizures are a fear (for many with epilepsy). He is so poorly controlled right now that any help we can get monitoring his seizures will help us determine how to treat him and how he is responding to that treatment.

On top of his difficulties, my health has declined shapely this summer. I know I am sick, I can feel it in more ways than one. If I don’t take some of my meds, I feel like I have the flu. I am tired and depressed. I keep praying and working with my doctors to get me the right medication to help with all my symptoms. One thing is certain, RA will not steal my voice.

Writing is all I have right now. I don’t work, and I am grateful for that, but it is difficult to be a one income family with extensive medical bills. I hope I can make something out of our difficulty. That is what I am about, making something wonderful out of the worst of situations. I am going to keep trying and I am going to keep praying for the ability to write pieces that will help others feel like they have a common ally in this world. It’s this girl. I’m right there struggling with you. Maybe we will see something great together.

*d*

I have decided to pick up and write during highly emotional times for me and see what comes spilling out. I will update this post with those thoughts as they happen. I will do mimimal editing to protect whatever voice I use while writing. Understand, what comes out of me during a highly emotional moment may not always make sense but I want to share those moments. These are moments I believe we all have. My hope is to put into words some of the issues we all experience yet rarely escape our lips.

Entry 1: Written while thinking about how I was going to move past my diagnoses of Rheumatoid Arthritis (RA) and Fibromyalgia. I have been experiencing pain I had not expected. I am experiencing an RA flare and I went downhill very quickly. I can’t get around in the morning without assistance because of the severe pain I experience specifically during the morning hours. I am struggling to find purpose in the addition of this disease on top of already having a special needs child with his own complex diagnoses. ~

A diagnosis makes me think about death. I can’t help it. When the name of disease dropped from the physician’s lips, I immediately thought about the worst case scenario. I worried about every unfamiliarity, drug, and all the new phrases thrown my direction in a language I didn’t understand. I didn’t just cry, I wept. My tears came from such a deep place inside me that it almost felt as if a piece of my soul were escaping with them. Days were blurry. All I remember is the hurt I felt after knowing nothing will ever again be the same. There will be things that will no longer be able to be accomplished, words that will now remain unspoken, and dreams that will now have to be relinquished. I was in mourning, yet I was very much alive. Mourning my life while I was still living was a contradiction. I struggled with all things and I wanted to give up on finding myself again.

Then creeped in a small glimmer of light. It was hope. It was the knowledge that life is not over but still meant to be lived. I could not live my days as if it were already gone. If I kept choosing to mourn life, I had already given up on hope. So I chose hope. I chose faith. I chose to live. I chose to use those words that choked meaning out of my life to find a new purpose.

I see who I am. I see who I was. I had to change. I wanted to stop distracting my life with things that kept me from fulfilling this life. When life changes so dramatically, the span of a lifetime shrinks. There is no forever, there is only today. There is today to make a positive change in the lives around me. There is today to show others love. Death usually stirs up these same feelings in so many people but after waking away from the casket, much is forgotten. What changes are made are often temporary and life goes back to the same distractions taking away from a life rich with meaning.

Fear of death also ruins many things. Death hurts. It especially hurts when we have loved the deceased so much. To avoid that deep anguish, we pull away to protect ourselves from feeling that way again. But pushing away others to avoid future pain limits the joy that should be experienced now.

I have been depressed, have had panic attacks, and worried myself into distress over the unknown of diagnoses and of life. In essence, I robbed myself time to trust, the ability to have faith, and additional moments to love.

I essentially drew myself so close to the only dark spot in my life that it shrouded every last bit of light. I decided to hide in the only dark corner and hold onto my fear. I also hid there alone. I wanted to stay in my pity and cry about how unfair life had become while refusing help. It felt good to finally take a hand and say, “I can’t do it alone.”

Asking for help is a hard thing to do but it is a freeing moment. I didn’t have to stay alone in my dark. I could embrace those trying to pull me into the light. In the shadow of life is no place to be. When facing a challenge, go where the path can be seen, don’t walk in the dark. Choose to press against that darkness and love despite the hurt. Pull those hands close and love those who follow you anywhere. A lifetime of love is worth any eventual pain. Pain is better handled when leaning on love. No diagnosis or pain is worth giving up this life. It may make it harder. It may be lonely but run toward the light. Run toward love, don’t stop living because of one speck of darkness.

*d*
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Beauty in a Different Wrapper

We sat alone and waited for the neurologist. “My son has a neurologist,” I thought, “how did this happen?” We stared at the computer sitting on a long table. Shortly we’d be able to see what was causing our baby’s seizures. It was like waiting to unveil and unknown enemy. The neurologist would soon come in, press a few buttons on that computer, and show us what was so different about our little boy. He had a number of different tests over the two days we had been at the hospital but only the M.R.I. would allow us to actually look at what this Tuberous Sclerosis Complex was doing to our baby. The name was foreign to us but yet it was suddenly going to be a part of our lives. A mere three days ago we had a normal little boy but now we had that little boy plus a rare disease unknown to us and most of the hospital staff.

We spent several hours on the phone trying to explain what our little boy had and what it meant for his future but we only managed to muddle through the numerous conversations with family and friends. Whatever this Tuberous Sclerosis was, I hated it and I wanted no part of what it was doing to my son.

My husband and I looked at each other. We gave one another the same look; the look that asks, “What are we going to do?” I am sure I had just as much desperation in my eyes as I saw in his. We felt defeated, broken, and very much alone.

It was in those moments after receiving that terrible news that our life seemed to stop so abruptly. It stopped, we stopped, and for the first time, we had no clue as to where our lives were heading. The addition of this terrible knowledge gave us a heightened awareness of how normal the lives were of those same family and friends we had those muddled conversarions with in those first few hours after we arrived at the hospital. Our normal was gone. I realized everything had changed and life would not go on for us as it once did. We were handed back our life in shambles as it was our turn to get the terrible news. Why did we have to be the ones? Why did our son have to be sick? Things like this don’t happen so close to home, let alone in our home. What was worse was the terrible feeling of isolation. No matter who called us, hugged us, or offered comfort, no one could stand in and take our pain. The gnawing yearning to find someone, anyone who would intimately understand our pain was overwhelming. We didn’t want to feel so….. alone…..

Last year I had an idea, I wanted to start a blog. At first, I really didn’t want to share it with the world. I wanted to keep it within a limited reach. My friend and I loved to write and what better way to turn what we love into a little more. Over the years I have wrote a few thought-filled pieces for my Facebook friends updating them on the condition of my son but the response was minimal at best. I thought that maybe I should be the one reaching out to others searching like me.

So we decided we would write. To keep our little blog confidential and comfortable, we began to use just an initial as our names, *d* and ~L~.  This was good for many reasons; we could have the freedom of writing without backlash from hyper-critial people and if we were at the receiving end of negative feedback, they would be cutting down these alternative personas of us, not the actual us, my friend and I could be viewed as equals in our pieces and we would be able to blur the lines of our differences and write cohesively, and hopefully readers could identify with us much easier. We wanted anyone to say, “Yes, I could be *d* or ~L~ and I feel the same way”. A few months after we began our venture, I decided to submit my work and try to reach a little further out into the world. Since my first submission to The Mighty in June, I have twelve pieces on their site and one of those went on to be successfully picked up by Yahoo Health. I am amazed my voice has made it that far. But there is so much more we want to do. There is a definite purpose in our writing, maybe we don’t fully understand what it is, but I know what I would like it to be….. I don’t want anyone to feel as alone as my husband and I did when our son was diagnosed. I want others who feel alone to find a common thread in our writing. The story of my life is a mess but I feel like I need to share it. I want others to know there is hope and happiness in what seems to be the most difficulty.

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I am often in awe of humanity. It’s easy to get tangled in all the bad news shared on television and social media. It makes me sad when stories highlighting the resilience and goodness of humanity occupy only a few short minutes of our day. We are beautiful creatures. My faith teaches me that we are perfectly designed and created but I also understand that my opinion is as different as we are from each other. Nonetheless, we cannot deny the genuine beauty we all possess. We have and inner strength and beauty that makes us move forward in the face of the most impossible feats and dares us to move even further to explore ourselves. Despite the vast array of our own kind, we hold many unspoken, common bonds. Most of us want commpanionship, we want to feel loved, and we are looking for ways to become better versions of ourselves.

No doubt evil has encroached on the heels of humanity. It tempts us to turn our backs on one another, deprive the needy, and think only of what is good for ourselves. The battle of good and evil will exist long after our generations have passed so that means we have to work that much harder, no matter what you believe, to ensure humanity can continue to shine as a beacon of love and grace.

Finding our purpose isn’t always easy. As a child, we think about what we would like to do when we grow up. When we listen closely to our little ones, a good majority of them want to help others in the future. As we grow we learn and change our opinions of what would be best for us. We also think about if what we want to spend the rest of our lives doing is best for us. We take into consideration finances, schooling, and where we would like to live. But we cannot forget those first thoughts we may have had about our future. The possibilities were endless. Today we may not want to pursue a career in service to others but we can still do great things for each other. These acts may only require a moment of your time but they can impact the world one moment at a time for the good of our future.

I want to write. I want to expose the raw nature of my life and sometimes open myself up to critics to be a voice of hope. While I have come to terms with the very real possibility and reality that I will be at the receiving end of negativity, it all becomes worth it when I have successfully reached across the small screen of my phone to put out my virtual hand to another human being that needs to hear the words, “You are not alone.”

We were not meant to be alone. We were gifted one another. Yes, it’s hard when we are gifted with something that is sometimes difficult to understand or appreciate. Sometimes those gifts aren’t as we imagined but once we take the time to unwrap what we have, we can see the goodness under any wrapping. We sometimes have to tear off shame, guilt, fear, and a common flawed nature to find the treasure inside. We have to take the time to understand that an unexpected gift is sometimes the best gift of all.

Life comes with shocking and truly terrifying moments. These moments can sometimes pull us to the edge more times than we would rather admit but if we are all honest with one another, we would say that our toes have all been dangling over that edge. We have all felt the disparate loneliness that we must face alone. No one else can stand in if and when the word cancer, disability, or death is directed at us. No one else can stand alongside the casket of our precious loved one and receive condolences. There are times when we have to stand alone but that doesn’t mean we have to be alone. We can find comfort when a hand reaches out from across that chasm and a voice says, “I have been there too”.

Eventually those voices and hands that reach out to grab us at our most vulnerable moments are those hands that welcome us home. Home indeed can be made of walls, windows, and our personal memories but home is a place where we feel like we belong. I recently had a conversation with my aunt who has struggled most of her life. She, like many people, have felt isolated and alone because she was different. During a recent conversation she said, “For years, all I wanted was my family.” It took years and a lot of heartache but she has found love and acceptance. And she feels like she has a home. She has a place where she is loved beyond the wrapping she had felt was too different to love.

In the reach of our progress, it is sad when there are people who still feel unloved and alone because their wrapping. They are those who identify themselves as “different” or were gifted something precious in a different wrapper. We must not forget, when we are all stripped down to the core of our humanity, we want to be loved, we want to be accepted, and we have fought for a place to belong. So don’t believe the headlines that scream to the masses that life is only for those who come from a predetermined mold. Humanity is for everyone. Life is meant to be cherished and enjoyed and you don’t have to fit a hypothetical criteria to do that.

We learn to grow and truly appreciate what we have when our toes are dangling over the edge. It is then we look back and yearn for that solid ground. Too soon life can change and you may be asked to break the mold. If that time comes, take all the strength of humanity and break it across that divide. Will you help bridge the gap and fill the void with all the wonderful things that make you different and a beautiful part of us all?

*d*

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The Princess Says, “Let Go!”

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Tonight I sat on my porch as storms rolled in and somehow I felt youthful. Maybe it was because I sat barefoot on my porch swing or more so that I was able to sit alone and undisturbed. The absence of little ones vying for my attention or a to-do list felt freeing, if just for a few minutes. It made me miss the days when I would drive to my favorite nature preserve and write in my journal. I was alone and free to use my time for more creative tasks. I would walk to a nice spot, sit with my journal and spend an hour spilling out my thoughts on paper. I miss everything about that sentence. I can’t walk without pain or write very long without discomfort. It’s rather sad for me to think about how much has changed in such a short period of time. It seems like a lifetime between now and then, but in reality it has only been a few short years. I wonder, why did my body decide to start attacking itself? I keep hoping it will stop and this pain can also become part of my past.

Tonight I told my husband that I might have been okay with my diagnoses if they would have come several years down the road and not when I have small children. I have a doctor’s appointment tomorrow and I’m not thinking about what I will be asking the doctor. Instead, I am thinking about how hard it will be to lift my infant daughter in to and out of her car seat several times, shuffling all four kids between a sitter and home, walking a distance to my doctor’s office, and I wonder after all is done, will I have the strength to make it through the rest of the day. I don’t have the option of calling in sick as a mom, I have to keep going, even when my body doesn’t want to go. My husband recently asked me, “If you knew you would have all this pain before we had kids, would you have had four?”

I replied, “I wouldn’t change a thing.”

Isn’t it funny how difficulty often makes us think of hypothetical situations? “If I only knew…..” or “Hindsight is 20/20.” Sure it is but does it matter? Does it help for me to play out future events and allow myself to stress about events that haven’t even occurred? The only thing that can change is now and if I can’t change the past or circumstances that will happen in my future, what am I doing to myself? I must be assembling my own nightmare.

While writing this piece, my daughter called out from her bed, “Mommy! Mommy!” It was difficult to get out of bed and down the hall to her. The RA hurts my joints and the Fibromyalgia hurts the rest. I hobbled down the hall, my head fresh with thoughts of my days sitting in the park and the free feeling I experienced earlier today. She was sitting up in bed and waiting for me. Getting out of my bed was what she anticipated and she expects mommy to come when she calls so I can’t disappoint her just because my body hurts. I sat down on her bed and asked her if she had a bad dream which indeed she had. I kissed her head and started a new dream for her to have, one with a pretty pink princess that dashes away on a pony with a pink mane because pink is my daughter’s favorite color as well as mine. This princess was free of whatever may have caused the bad dream and ready for my daughter to lay down her head and take her on her next big adventure. I was all she needed to forget her nightmare. I underestimated what I can do as a mom and as she closed her eyes, I realized that I didn’t want to be the woman I once was. I too have set off on another adventure and I must redefine my next dream.

I am a mom, a wife, and I am still a writer. I am not famous but I have the privilege of being an author and character in the lives of my children. How lucky am I. Dwelling on the past and worrying about tomorrow robs me of being fully present to write my own future. Yes, it may physically hurt, but it will be beautiful.

~d~

Task Away!!!!!!!!

Newton’s second law of motion as defined by my handy Google search states that the acceleration of an object is dependent on two variables: the net force acting upon the object and the mass of the object. I love facts and I love Google.

Today a great deal of information is right at our fingertips. For me, it is right on my smartphone. The only Internet access we have is through our cell phone carrier. Because my phone and internet is so handy, I am shamelessly addicted to reading articles, Google-ing questions (and of course useless movie info), checking social media statuses, and fantasizing about my house looking like photos on various home improvement sights. Unfortunately, it is hard to draw the line where fact ends and fantasy begins.  Is the internet “information” I am filling my head with really useful? What am I doing mentally to promote a healthy movement forward? What does this have to do with me writing a blog?

Well, I often wonder why I am so excited about writing and less than enthusiastic about reading a book. I know to grow as a writer I must expose myself to various writing techniques, points of view, and genres but instead, I find myself filling up on all the tidbits the Internet has to offer.  I often remind myself that I should finish any one of the many books I have been working on for months, so I pick one up and once again become distracted. What is wrong with me? Why can’t my mind sit still? I have asked myself these questions quite a bit in the last three months. I know I have been distracted by my own health problems. I have taken a break to allow myself time to accept and rebuild my life with the knowledge of my own illnesses. It was also nearly impossible for me to keep a straight thought after being injected with steroids for my RA several times in the last few months (making me feel less like the Hulk and more like the Joker), the last round ending an ambulance ride for an allergic reaction. I also admit that I like instant gratification. I don’t want to wait for a story to end, I want to know what happens NOW! What if I have another severe allergic reaction and die before I know how the story ends? I know that is why I don’t get hooked on mini-series or television programs, I hate cliff-hangers! It doesn’t mean that I have never finished a book or indulged in a favorite program, it just means that I have acquired a taste for the get-it-now lifestyle this world is becoming accustomed to experiencing. Lastly, I have made it my life’s purpose to attempt to perfect the art of multitasking. I once heard (or probably read some short article) about how to multitask efficiently. It probably declared, “Find something to do when you are between doing another something! Don’t sit idle when there is something else to do!!” This is why I struggle finishing any of the ten tasks I start because I go from one to the other without finishing what I started in the first place! I know how my brain works. If I think of something, I probably should take care of whatever it is, or I will forget. So I start one thing, remember another, then another, and keep building until my brain melts. ~Sigh~ I have gotten better at my multitasking lifestyle; my house is very clean for a large family but my purse isn’t. My laundry is washed and folded as it comes out of the dryer but often doesn’t make its way upstairs before the next laundry day comes around. I have a list of planned meals on my fridge but often eat out because I am too tired to prepare a meal after a long day and swollen joints. In short, I am my own roadblock. How can I possibly move forward when I am sabotaging myself by just being myself? According to Newton’s law, I’m screwed! Anytime I get determination behind my actions, I can’t get moving! I don’t have the strength (literally or figuratively)!
Forward motion takes strength. I have to have muscle behind my words and actions.

By many accounts, I am a strong person but the variables beyond my control have taken the muscle out of my plans. My body got weak and so I got weak. I stopped moving. Who knows how long it will take to adjust to my life without my usual might but at least I understand my weaknesses and this post is one step forward. Isn’t that what’s important? Keep moving forward, even when it’s hard. For me, it’s picking up a book and finishing it, even if it takes all year, organizing my purse or cooking a meal. It’s also taking what I love and using it to my advantage, like searching for Newton’s Laws of Physics and using that information in my next post. I many not have the muscle I used to but I do have creativity!

~d~

Selling the Balance

When I left my job as a hospital housekeeper in April of 2013, I left behind the blood, the tissue, the vomit and urine and most of all, the DRAMA. I left it to finish my novel and take a break after planning our wedding, the wedding of the century—ok, not quite that big, but an ordeal nonetheless. My break went from a month to three months to a year to almost two years. Initially, the plan was to take the break, then look for another job. What we discovered while having me home was that it was nice. There was someone at home to keep the house and yard up, and do the daytime running that would otherwise have to wait for Saturday or result in someone having to take time off from their daytime job. With no kids, I could do all of that and still had time to write and read, which, aside from horses, is inarguably my life’s passion. I also had time to cook and try all of those long-pinned Pinterest recipes. That benefited my husband and me greatly since we’d been guilty of dining out virtually every day of the week and wasting money and gaining weight.

Now that I’m essentially working full-time again, with the cleaning I do for several families and the position in the insurance agency, I’m scrambling for balance. Along with the increased out-of-the-house work, I still have to maintain my home and I also lend a hand to my disabled mother and 84-year-old grandmother. I share the responsibility of keeping Granny living independently in her own home with my mom. We shop for her and mom gets her to appointments. I mow her yard and clean her house and make sure her pills for the week get set up. Mom and I call her throughout the day to remind her to take her medication. For my mom, I do heavy lifting and offer moral support. Being disabled has caused her to be depressed and unable to push forward sometimes. Dealing with my own depression hasn’t always made me the best pep-talker, but I feel like if I go down, we all do. So I keep my head up, my nose just above the lapping waters of anxiety and depression at times, and keep pushing. With everything on my plate, it’s been easy to feel overwhelmed. I have to straighten the chaos.

I know I’m not alone. And that hurts my heart. This country is full of people who’ve given up on their dreams because they have to work. So many are busy working to live that they indeed forget to live. My husband is probably the example of this closest to me. I don’t want that to be me. I don’t want to give up the cooking new recipes and keeping us out of the fast food joints. I don’t want to forfeit my clean house and all the projects I have in mind for this summer and our home. Mostly, I don’t want to let my writing be put on a back burner again.

Right now, it feels like it might be on the back burner of someone else’s stove. I let that happen for years and that’s why it took me a decade to get my novel done. This blog and *d* and joining the writing community Scribophile has allowed me to enjoy writing like I’ve never been able before. I am desperate to not let it go. I don’t want to sell my dreams for a steady paycheck no matter how much I enjoy the work. There is a way to do it all. I know there is. There has to be.

~L~