When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug. Or, they will insist that we are just addicts who refuse to find ways to manage our pain.
And for some of us it is a type of shaming that is hard to get out of our heads. For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them. It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.
I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care. It was incredible and refreshing. She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back. That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications. She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s. This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.
So, now there are pills. Seven of them. Only two daily use, and the rest to be used “as needed”, which is something I rather like. The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them. They improve my quality of life in a general manner. Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA! C WUT I DID THERE?). Lyrica helps me not want to throw myself out the window* (which would be a feat w/ the window protectors on our sliding door-sized windows). In other words, it means mobility and movement, once I have adjusted to the side effects. Yes, it takes a while to adjust, but it is worth it. The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now). It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up. It also has side effects, such as a metallic taste in my mouth. But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade. For now, I switch to plastic cutlery and all is well with the world. (more…)