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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More Than the Ground Beneath My Feet

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The color of the sky was a pale gray saturated with a cold mist of rain. The wind was getting colder and the moisture was starting to freeze. It looked and felt just like my mood. Deceptively bright. Bright enough to fill a room with light but incapable of being the only source of it.  A gray day with mounting fog that felt like an oppressive shroud. There was no escape from the way it made me feel. The dingy light slunk its way in and I allowed it to spew its way out of my mouth. I waited for the sun, an indication of the end to this dismal blockade but that would have to wait until morning. Then again, mornings have beaten me down.

I have grown tired of these days. Every morning my eyes burn, my body groans, and I can barely walk to the end of the hall. When did the middle of life feel like the beginning of the end? Where was my body and how did it get replaced with one hardly recognizable? I feel like I am drowning. I am in a sea of gray, pulled down by the weight of this disease. I am gasping for a fresh breath of life and only find that stale, foggy air. It has become more of the same…… endless days pleading to feel normal……wondering if I will ever feel like I can do all the things that glimmer still left in my heart desires. It is fading and the light is growing more opaque. Yet, I still breathe. I refuse to hand over my life to whatever may be hiding under the shroud. I don’t run. No, I cannot do that any longer. I fly. I close my eyes and free myself. My heart burns and the heat courses down my neck. My pulse and heart are at the same frantic rhythm. I must rise above the gray. Atop what encircles the atmosphere that is my life lives hope. To find it I must push against what is bearing down on me and lift my face to the sky. I must look up. I have to stop watching where my feet are placed and look to where they need to go.

The internal struggle is real. I feel the tug of greed, envy, and idleness slide in beside self-pity. I fight the urge to fold my tired body inward and collapse to the spot on the ground where my eyes have wandered. I don’t have to fight there, I can just rest. I don’t want to get up. Pity says, “Stay.” Hope demands I get up. Faith lifts my head and moves me forward. My faith is one rooted in self-sacrificing love. My feet have not been placed on this Earth to serve my own needs but to give whatever may be left of my tattered body to serve those who need me. But it is hard and I am tired. I am worn down by too many variables out of my control. I keep trying to move forward, hoping, and fixing my eyes upward. I remind myself to pull my eyes away from the haze and to the place where the sun never sets. There is beauty beyond what I can see and more that I will never understand. Here is where my toil has meaning and my unrest has purpose. Faith is trusting in something not fully understood. It asks our feet to move forward even when beaten down with the disparities of life. It gives hope and promises more. Faith is the source of the everlasting light.

I never wanted the obstacles placed at my feet. I move cautiously but I still stumble when I fail to look up to see where I am going. True faith is walking along a path despite the barriers that undeniably make the journey more difficult.  Each day I must choose. I can choose to allow the bitter sting of unfairness to swallow me up in a lightless expanse that troubles my soul and steals my hope or I can choose to walk by faith. I can look heavenward and hasten forward in confidence. I can be assured my path is clear and travels are never taken alone. I can live a life exemplified by faith and grounded in love.

*d*