The Ugly.

I wrote the below post about a week or so ago in absolute devastation. I didn't want to post it because I feel the need for this to be some ridiculous inspirational blog in which I am always a super badass woman who defeats chronic illness in a single bound. But that's not realistic or honest. Some days it defeats me...and for this to be a true picture of my life and a journey for me to look back on, I have to remember the good, the bad, and the ugly. And this my friends is ugly.

Two days ago I unexpectedly had to stand for an hour in a patient's room - and today, 3 days later I am still paying for it. Most of you likely hear that and think an hour is not that big of a deal, and part of why I was so mad was because I felt that way too. I'm in my 20s, and after I left that room and went back to my office, almost falling the whole way because my legs were numb, and just lost my mind. Thankfully, I had the office to myself. It was ugly. I wish I could adequately paint this picture for you, but I was full on drowning in the throes of despair. I was sobbing uncontrollably, hyperventilating to the point of almost fainting and uncontrollable in all regards. I was in the second most pain I've ever been in during my lifetime - which is saying something. I was angrily venting to my 2 people and yelling at God, begging for an answer. And the end result? Life isn't fair. This situation isn't fair. I had just come from a patient's room after trying to help her, and she knowingly was throwing away a chance at being better. A chance that 2 minutes later I was at the end of my rope begging for. She'll never know the sacrifice it took for me to stand with her for that hour. She didn't understand why the next day I came to her in a wheelchair. She'll never know the battles I face. And I realize if I want to truly bring awareness to chronic illnesses and my daily life, I need to show that we're not always on top. We feel burdened sometimes by the pressure of society to be an inspiration. There are some days when our illness does defeat us. And sometimes that's okay. It's okay for me to be mad, angry, frustrated and lose my mind for a minute if it means I can take a breath. It's okay if I'm tired from being knocked down. And it's okay to tell you about it....as much as I try to paint a pretty picture of overcoming my life - sometimes I don't.

You don't see these meltdowns.
You don't see my house littered with mobility aids.
You don't see the quiet moments I have with my husband when there's nothing left to say.
You don't hear the incessant thoughts telling me I'm right to think I'm useless and a piece of trash.
You don't hear the would be conversations I want to have with the woman who caused this.
You don't see the tears I shed for having to cancel a night out because I literally can't stand up.
You don't see the dirty. And how much I sacrifice so you don't. But it's there.

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A handful of you know that for the past two weeks I have been going through an experimental treatment to deal with my pain by getting ketamine infusions. Ketamine is well known in the medical world for being a popular anesthetic used for surgeries, and is quickly becoming well known for it's successes off-label for chronic pain, and now being studied for it's effects on depression.

Here I am at a pivotal decision that I have faced too many times to count in my life: do I roll the dice and gamble on a chance at something working? What if it doesn't work? Defeat and heartache. Loss of money and time. But potentially even scarier: what if it does? I don't know what a life without pain feels like. How would that change my life? Would it change who I am?

I literally can't count the number of medications, procedures, and treatments I have tried to alleviate or at least minimize my pain; none of them to any significant effect. And now, after two weeks of having my life completely turned upside down in a not so pleasant, daily life altering treatment I am yet again on the losing side. Absolute devastation and heartbreak don't even touch how I feel. There's not a big enough word for it, I don't think. So much hope and faith is put into another chance, only to have it dashed away. I researched for hours and talked to others who have successfully had the treatment. The odds were in my favor. Yet here I am again, in too much pain to focus on anything else and sobbing because my one tiny glimmer of hope is gone again.

Why hasn't anything worked? What's the point in continuing to search if decades of research and seeking new ideas hasn't worked? Doesn't seem to matter how good the odds are or how hard I try, at the end of the day I'm still stuck in extraordinary amounts of pain and having to force myself to see the silver lining or push my thoughts elsewhere. It's exhausting living everyday. It's even more exhausting when you add on never ending, never relenting pain from head to toe. It's furthermore exhausting to have to constantly redirect your thoughts to something else and try to pretend the pain isn't there or you're a word from breaking down and losing your mind.

This past Sunday our pastor had a passionate message with a word from the Holy Spirit that totally derailed his original sermon, and he felt such an intense NEED for someone in the room to hear the message he felt God was giving him. The whole series has been about running on empty (who doesn't feel this way?) and how to take God's promises to heart and lean on Him to get us through, and make sure we're running to the right things. His impassioned message was to keep holding on and that for someone in the room, possibly many, the long lost relationship, miracle, situation, whatever the case was that they had given up on or had been seeking answers for so long for would finally be answered. God was going to fulfill His promise and deliver something great. At that point I was halfway through my treatment and beginning to think it may not work, and really thought that the message was about my treatment and that it was going to begin to work. I went in to the next week and last half of my treatment with a renewed sense that it WAS going to work and I was finally going to get the relief I've longed for...but here we are.

Will it ever end? Some days I wonder. Tonight I finally have a free night to be with my husband and have quality time watching our TV shows, playing video games and just being together which hasn't happened in what feels like forever. Granted, I'm special enough to have gotten a mild concussion this morning and our plans were derailed so I could rest - but it was still something I've been craving and looking forward to. It's the weekend, so no need to wake up early or be anywhere in the morning which means we can stay up late into the night, yet it's barely 10 PM and I'm downing sleep medicine so I don't have to be conscious anymore. It just hurts too much to be awake. And my sainted husband holds me as tears slip down my face, despite my attempts to keep them inside and control myself so I don't wail and sob, wondering what he can do to take the pain away and knowing there's nothing tangible to be done. His night no longer is what he expected either. He misses out on quality time too. How do you explain to someone that it just hurts too much to be awake? How do I not feel like this is forever doomed to be how I always will feel? How do I keep going when the second I stand back up something else pushes me down?