It’s the holiday season. Everyone is cheerful and filled with glee. The stores are busy, almost everyone has packages outside their door, and beautiful holiday lights that make the night sky glisten. Everyone is starting to ask what you want as a gift for the holidays! Do you want new shoes, new top, or some perfume? But I cannot help but have some hesitation. I am not the Grinch but I’ve certainly been acting like one. It’s not that I don’t appreciate the kindness. But let’s be real all I’ve been stuck in a flare for way too long and I just want out. When you ask me what I want as a gift, I honestly don’t want anything that anyone can buy.
What I really want, is a cure. A cure to my incurable disease. I live each and every day, as many do, with Lupus. It’s a daunting disease. I live in chronic pain, chronic fatigue, brain fog, chronic inflammation, arthritis, constant flu feeling, and more. But since I cannot get a cure, right now I would like the medication that I’ve been waiting for, for months.
Unfortunately, my chemotherapy drugs, are no longer working as well as they used to. So the doctor added steroids to the bunch and it helps slightly. But I need this new medication. For Lupus there is only 1, yes ONE, FDA approved drug. So what does that mean? It is very expensive and hard to get approval from insurance. I am currently going through the battle of that. I got declined already and now in an appeal. But I cannot help but feel that my body is falling apart while I wait for this medication. I was told that this medication can help with so many of the issues that I am going through. I have seen my friends have success with it. My doctor is fighting for me. And I am so thankful for it.
When you live with Lupus there is no money in the world that can make my real issues go away. Grant it, it can help, but it won’t cure me. Lupus doesn’t care it’s the holidays. It doesn’t care about the fun I want to have or the time I want to spend with love ones. I learn to live with it, because I do not have a choice.
Living with an incurable disease is hard, but waiting for medication that might possibly change your life for months is even harder. I do not know how much longer I will have to wait. I truly hope it’s going to happen soon. I know cure isn’t here. Shouldn’t it be easier for those to access medications that might help them? Why does it need to be this hard? You don’t understand it, unless you live through it.
So maybe I don’t need a gift at all, more like a Christmas miracle. But when you ask me what I want. It’s not something you can buy at the store, or even make. The one thing I will as for is positive vibes, prayers, or whatever you got to send my way. Please help remind me to keep hope when I feel all is lost. That’s what I really need.