A thousand thoughts, a hundred questions.

The glass is half empty today and I’m about to vent, so readers beware.

I woke up today with such a heaviness in the pit of my stomach. The pain in my back, piercing and ever constant, was a quick reminder of the body I’d be spending the day in. Yes, it’s one of those days, when the reality of your situation hits you like a ton of bricks and it’s hard to even draw breath. The popping and grinding in my hip quickly reminded me not to move so carelessly, lest I not be able to move at all.

I would’ve crawled right back under the covers and told this day to leave me alone if it weren’t for the unavoidable; I was hurting too much to stay there anymore. When these days come I do my best to pass the time without letting my mind wander too far into the future. That’s where the paralyzing fear of my reality lurks. The most terrifying question of all when it comes to my body and the condition it’s in now: is this the best it’s ever going to be? And the answer is yes, because my disorder is degenerative. My body’s falling apart, not coming together. And this, most unbearable and painful of days, is one of the better, more tolerable ones I’m ever going to have.

How do I swallow that? I can’t, so I set it aside while my mind reads through the overwhelming amount of scenarios in my head; How am I going to live with this pain? Do I take more ibuprofen? What about the damage it’s doing to my stomach? After all I’m only 20, I need it to last me a long time yet. Do I take some more Tylenol? But what about my kidneys…they already deal with so much medication as it is. I already took my pain medication for today, it helped a bit but it’s nearly worn off now and the day is hardly 1/4 through. Do I take it again to make it through the day and then suffer another day for not having enough? I don’t even want to be on pain medication everyday but even when I am I’m barely coping. What happens when my tolerance is too high? What happens with the rebound headaches and other repercussions of pain medication? What happens when I can’t even remember what it feels like to think like myself, because pain and medication have dulled my mind for so long?

These are just some of the questions that play on repeat in my head all day. Every decision I make, every second of pain or sickness. The biggest one being; what’s going to happen to me? But, that’s beyond my control so I try to stay in the now. And right now I’m in too much pain, in too many different places. And so, as much as it breaks my heart and makes me sad, I think it’s time to talk to my doctor about upping my pain medication.

I’m going to talk to the neurologist about a treatment for my spine but that appointment is six long months away. Even then I don’t know if he’s going to know what to do with such a rare problem and complex disorder or if he’s going to put me on another long waiting list for a different specialist.

I never thought that I’d long for the days when my ribs and headaches were the height of my pain problems. Back then I never would’ve believed – not for a second – that was as good as it was ever going to be. It makes me realize the importance of hope and how endless the journey can seem when it’s taken away by words like “incurable” and “degenerative”.

Wilted by Hanna Pritchett

Thanks for tolerating the venting, as always.
Hugs xx

12 thoughts on “A thousand thoughts, a hundred questions.

  1. Our situations are so different but I relate so deeply to so many of your feelings. Especially about the pain medication. I don’t have answers yet, and I’m not sure I ever will. I recently found out that vicodin is the culprit for all the dental problems I have as it apparently weakens your teeth – ugh. Just one more thing to worry about, right? But you’re absolutely right – hope is the most important thing. “We must believe that if we give we will receive. Yes, we must believe that it’s going to get better.” Now obviously I don’t call life with pain better than my short adolescence of a pain-free life, but life overall is better. And on bad days I can at least summon up the positivity to say that life now is at least different. I have things I used to want. I do things I like to do when I can. And I know in the future I’ll have some things I’m wanting now, and I’ll do some things I like to do when I can. And it won’t be everything but it will be something, and that’s life, isn’t it? Hugs to you sweet friend.


    • Wow, (about the Vicodin and dental problems!) just what you needed hey! :(
      I love this comment, the parts about having some of the things that you want, and doing the things you’ve learned to like when you can and that even though it’s not everything it’s something. That’s the perfect way to say it and it’s so, so true.


  2. My amazing daughter if I had one wish it would be to take away all your pain and sickness.I know it has helped shape you into the amazing person you are but your beauty would have shone through without it.You are so strong and I love you so much<3


  3. Katie – I feel for you and I agree with coastal mom – there needs to be a compassion button – or a dislike button because I dislike what you are going through. You are so courageous to talk about this with us and raise awareness.


  4. It is times like these when they need a “compassion” button rather than a “LIKE” one but I will LIKE this because so many of us can relate and at the same time not exactly fully imagine what it must be like. Prayers going up for you though.
    I am sending you Bill’s blog. He has such a good perspective of things I just felt led to share him with you!
    You are a great writer. I am so sorry for your pain!


  5. My dearest Katie, :( I so understand and feel every word written deep in my heart for you. Funny how when the “new” pain comes how we wish for the old ones back. Those two last words I live with incurable, degenerative, progressive. But thanks to YOU I also live with hope, strength and passion. Thank you for sharing so honestly with us.
    Always your friend.


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