Wait, Wait, Wait…..

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I’m waiting in the doctor’s office. It’s apparently my thing now. Some people go out to eat, some go to bars, while others go shopping, I get to wait on doctors. I should have been forewarned about my present course of lifestyle long ago. But, unfortunately, there are many things you won’t hear once you or someone you love is diagnosed with a chronic illness.

For instance, I spend a lot of time rearranging my schedule or finding someone to help me take care of my children while I wait. I wait at the doctor’s office, hospitals, pharmacies, and if I’m really lucky, I get to wait with my ear glued to the phone while on hold with the insurance company, clinics, and my personal favorite, social security (eye roll). The most frustrating part, besides all the waiting, is knowing I will be doing it all again for follow up appointments, emergencies, or fighting with insurance and social security. It’s a guarantee. Hours of my life are spent with my butt glued to a chair dealing with something associated with my illness or that of my son.

Getting my son one of his medications got bad a couple years ago. It was so bad that I was on the verge of a breakdown. My son has a severe form of eplispsy and the best medication used to treat it was offered solely through a specialty pharmacy. This pharmacy needs a disclaimer, “Warning: dealing with our business is bad for your health”. In reality, that’s a problem with a lot of businesses and people who are supposed to help those with chronic illness, they really don’t.  All the extra appointments, phone calls, and paperwork just add to the already mounting stress of chronic illness.

So people like me wait. We wait for a break in hopes that something easier will come along. We wait for improvement in health so we can wait at the doctor’s office less often, we wait for the right medication so we don’t have to deal with pharmacies, insuance, and new medication schedules. We wait, wait, wait…..

When there is little in terms of health that we can control, it’s nice when we get a helping hand, a word of encouragement, or we are at the receiving end of a kind deed. And thank goodness those nice things don’t come with a wait…. they come into our lives and remind us we are not forgotten while we spend a good part of our days doing things we’d rather not.

If I have to wait for something, I’d love for it to be a vacation, a home improvement,  an evening, or better still, a weekend away but these things are usually physically and/or financially out of reach so that’s when the company of a good friend, a laughter filled conversation, or any time we can get to enjoy the things we love are invaluable. Chronic illness changed how I look at life and what’s important. When my mom takes time out of her day to wait with me at my appointments, my husband volunteers to be the one to fight with the insurance company, or my friend drives her shoulder to my house for me to cry on, it’s a big deal. When I feel like so much has been taken away, the little things become the big things that matter.

I know how hard it can be to find the right words when someone is struggling. In truth, there are no right words, what matters are those well intended actions. Even if you don’t know what to say, pick of the phone and try something like, “I wanted to see how you were doing today,” send a text, mail a card of encouragement, offer a smile, or volunteer a few minutes out of your day to wait along with someone like me or my son who spend a lot of time doing it alone. Don’t be discouraged if you don’t know what to say or do, being in the company of a friend is always worth the wait.

*d*

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Thank You for Reading and Sharing

This is one of my posts picked up by The Mighty. I wanted to post it here to somehow say thank you to all those who responded with positive comments, sent an e-mail, or prayed for us. It means a lot to me and my family. It has been shared more than I had anticipated, over 4100 times at last check. It’s scary and exciting all at the same time. I am excited to see the diseases in my article getting attention as a cure, especially for my son’s disease, is a huge hope of mine. If you have stumbled across our page after reading this article, thank you for reading, sharing, and helping us spread awareness about Tuberous Sclerosis Complex, Epilepsy (Infantile Spasms), Rheumatoid Arthritis, and Fibromyalgia.
Please browse our page, we hope we are spreading our own bit of hope to the world!

*d*

http://themighty.com/2015/08/why-im-showing-these-private-photos-of-my-life-with-chronic-illnesses/

Help from a Song

It took one day in mid-October to change my life. My infant son was admitted to the hosptial after having two seizures at home. After three days of scans, questions, and crying, we were given a diagnosis, Tuberous Sclerosis Complex. We left the hospital in shock. We had never heard of this disease and now it threatened our son’s life.

Nothing made sense as we drove home from the hosptial that night. As I sat next to him, I held his tiny hand and studied his perfect face. It was only three months ago when we brought this precious life into the world and we had so many dreams for him. No one could tell us how this would effect his life and we were told he could be disabled. I was heartbroken as I realized the future was uncertain at best. There was no more dreaming of tomorrow as we were uncertain of today.

As time progressed, so did his disease. He developed a catastrophic form of epilepsy, he began to exhibit behavioral issues, and efforts to control the effects of the disease kept failing. I became more depressed despite my deep faith that teaches purpose in suffering. The feeling of helplessness was overwhelming. I yearned for the days with my baby when I could still imagine him free of his disease and I could hope that he would fulfill a normal life.

We reached our emotional bottom after five years of sleepless nights and uncontrolled epilepsy. His medical team wanted to discuss the next step in gaining control over his seizure activity. It was in that room amongst the discussion of neurosurgery that helped change my perspective. I didn’t see the young boy who was hitting, screaming and injuring himself out of frustration or pain, I saw my baby. I saw him as small and innocent as the day I held his hand on the way back to the hospital and my heart broke all over again. How could this be happening? I tried to sort out the last six years of ups and downs and continual failures. Fortunately we were given the option of starting a new medication and avoiding neurosurgery. We once again left the hosptial with mounting uncertainty.

Shortly after that visit, the song, “Can We Start Again Please” from Jesus Christ Superstar popped into my head. It persistently played in my head so I scrambled to find the song online. When I heard it, I wept. I recounted six years of failures. I recounted everything from medication to my own failure as his mother. It knew this song was God’s way of telling me that it’s okay to start again. It was okay to fail because the question could always be asked, “Can we start again please?” Shortly after, I rocked him in my arms while listening to that song and I softly sang it in his ear. I then asked for his forgiveness for my own failures. I knew the frustration with his disease had also gotten the best of me. When the difficult days get the best of me, I ask to start again. Sometimes several times a day if necessary. I just keep trying. A simple song reminded me that there is always a time to start again.

*d*

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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Creepin’ On My Fellow Drivers

I noticed something ridiculous today (besides yet another crusty looking hand towel). On my way home from work I passed several cars going the opposite direction and for whatever reason I looked at the drivers. Two of the first three had their mouths wide open. The third, a broad smile, like maybe she’d just won the lottery and was driving to claim her prize. After that, it became an obsession. I looked at each passing vehicle and realized that driving makes you look like an idiot. In addition to gaping mouths and silly smirks, I saw a few furrowed brows and scowls, someone gazing off into a corn field, and one guy behind the wheel of a pickup that I swear looked like he was clapping like he was gearing up to get down the fiddle and bow. Hands on the wheel, buddy!

The lesson here? Be aware of your facial expressions at all times. If you don’t mind looking like that pink thing that shoots eggs at Mario and his friends in Mario Brothers 2, go ahead and sing. Angry? From where the other driver sits, you just look constipated. So smile. But not too much. You don’t want to look like a lunatic.

You just know she's singing "Let It Go."
You just know she’s singing “Let It Go.”

~L~

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*