Friday, May 20, 2016



Here We Go Again

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    Those of you who follow me (Thank You Soooo Much BTW) know that I write sporadically. I just posted a few days ago, but as writing is my outlet, and there is still a huge issue on my mind, I am writing again.
    So here’s the thing: we are going on vacation in two weeks. My husband is playing in a poker tournament in Las Vegas and we planned a whole week there in the hopes he will do well. The problem? I am not very excited about going. And I know I should be.
    I mean who doesn’t want to go on a vacation and get away from all the normal crap they have going on in everyday life? Apparently, ME. And here’s why…  Everything I want to leave behind and escape will be travelling with me. No, not my husband! (At least  not this time!) I am talking about my disease. The pain, fatigue, and the constatnt need for recovery periods after a simple day out.
    You see, our last vacation was to California in 2015. It was my dream to see Glass Beach and to see the waves on the west coast. So we went. And I loved every minute of it. But it was a year after my first cracked vertebrae. And it was rough, physically and emotionally. It was a constatnt struggle to keep myself mobile, relatively pain free, and not bring down my family while we were out and about. I brought a cane with me for the first time ever on a vacation and it was still difficult. But I managed.
    Now, a year later, I have endured yet another fractured vertebrae and my disease, as AI diseases will, has gotten worse. The effects of these have increased my pain and fatigue levels and created a situation where I rest my back on an almost daily basis by laying on the couch. How is this conducive to enjoying a vacation?
    Beyond the physical pain though, is the emotional pain and guilt I am currently feeling. This trip is my husband’s dream. And I don’t want to ruin it. But I can’t help obsessing over the fact that it will be Vegas-in June. A town where walking the strip to see the sights and attractions outside the casinos (which are huge by the way) is what you do. And for someone who has trouble with walking any real distance and can’t stand to be in heat at all, well, I’m a bit terrified.
    It’s not that my husband doesn’t understand. I am lucky, my family goes out of their way to try to accomodate me and keep me safe and healthy. But to bring my husband forcibly into my world of sickness on a trip he has been looking forward to for years is something I just can’t wrap my mind around. And that’s what this is all about. And where my brain is abandoning me.
    You see, I am at a stalemate. I so want to be excited and looking forward to this trip. I want to be as excited as my husband is. And for certain things, I am. We are seeing Criss Angel and I will be meeting a Facebook friend for the first time ever! Two things I have wanted to do for a very long time. But the fear of my limitations and my body’s unreliability overshadow all that I should be looking forward to. And this time, I am at a loss as to how to work around it.
    So for now, I will do what I always do, what people like me always do, and simply plan. I will pack clothes that keep the sun off of me and extra medications for pain that I have access to but rarely use. And I will smile. I will strap on my back brace and pray for an easy landing. I will ask for a wheelchair in the airport if I need it and get to our connecting flight in time instead of hobbling as fast as I can and ruining the next leg of our journey. I will choose every opportunity to be safe.
    And when I get there, I know I will finally feel all the excitement I should be feeling now but that my disease has stolen from me. And I will have fun! Because being chronically ill can only steal from me as much as I allow it to. And I refuse to let it steal the fun from my life!