IC Journey

And Now for the Rest of the Story…

Posted in Uncategorized by LJ Johnson on April 26, 2010

Actually, I had nothing witty to say yet (I’m so tired it is hard to think straight!), and that, and so many of the old Paul Harvey broadcasts popped into my sleep-deprived brain. I think people listened to him as much for the sound of his voice as the content of the stories. Something in the slightly-raspy timbre of his voice was very comforting. I have a thing for voices, though.

Today it hurts to walk. However, there was a kid to get to school, animals to feed, and the kid I sent to school was once again out of clean t-shirts (I think part of the issue is that they disappear, but right now I don’t know where they went to because his room is clean and usually anything that doesn’t end up in the laundry is easy to find – you trip over it on his floor!), so I had laundry to get started or the school might get a little cranky. They’re actually pretty adamant about equal rights at that age I guess – if girls can’t be topless, the boys have to keep it covered, too.

I hate it when the pain gets to this point because my doctor worries that any more pain medication will make me non-functional (strangely I know of IC patients on much higher doses of narcotic than I am, granted, I don’t know how many hours they spend awake each day). There are probably also days where I would trade in functionality (not all of them, but at least a handful a month) to have the pain at a low enough level that it doesn’t interfere with my sleep and doesn’t make me want to stay still in one place with a heating pad. At the same time, at least the pain medicine works to a point where I no longer turn white as a sheet and start sweating like crazy every day. It’s down to only once or twice a week most of the time.

Yes, today’s title has absolutely nothing to do with the post. Welcome to the surreality of sleeplessness. Random thoughts kind of flit in and you grab them as tight as you can, but then you have neither the energy nor the focus to actually follow them where they might lead. At least I’m someone who is easily amused.

It is hard, even shaming, to ever approach my doctor about my pain management. I think there are things I will do here first before I pursue any increase, including starting the New Dawn Pilates DVD that I ordered (hasn’t arrived yet) in hopes that it will help make things better, quitting sugar cold turkey (it increases inflammation), and spending more time reading my Bible and praying (often credited for reducing pain and stress). Might also add more music – have read that music alone can reduce or eliminate pain. In the end, the truth is that ANYTHING that you can change your focus to always reduces pain. I have lived with pain of varying levels for a long time, actually. I think it is one of the most frustrating things about pursuing pain management – it feels like they believe you didn’t start having pain to any degree until you asked them to treat it. They don’t know of the years I used ibuprofen and tylenol and still had times when the pain would make me physically ill, but if it didn’t last more than a day or two or I had the occasional pain pill that hadn’t been used up when prescribed, I would add it (being very aware of the amount of tylenol or NSAID to be sure I neither conflicted nor overdosed) until things were where I at least quit feeling physically ill.

I am neither an addict nor a whiner (yes, I know anyone who stumbles across this on the internet will raise an eyebrow, or maybe even laugh at the last part – if you’re in the medical profession you might laugh at the entire assertion). I’ve found that, in real life, complaining usually never gets you anything except other grumpy people around you and, ultimately, people who avoid you entirely. No one CARES if you don’t feel well, are having a bad day or just endured the biggest tragedy of your life. They just want to know if you’re going to smile at them, make them feel good about themselves and maybe give them what they expect from you. Operant conditioning maybe? The latter is all rewarding behavior. People believe they should get a reward just for looking you in the eye and not calling you names sometimes…

I know as a Christian I am called to serve in love. I know the past few days I have been very sinful because my heart and attitude are not where they should be, and I would be ashamed if someone who didn’t know me took these past three days and expected THOSE to be an example of a “Godly” life – what heartbreak! I read Psalm 51 yesterday, quietly and aloud, to myself, and ended up in tears more than once. Though I have hurt others, every single thing I’ve done has been an affront to God, and I KNOW that better is expected of me. So today I pray that God will give me the strength to be who He wants me to be within this, and to have the joy that comes from being chosen to endure a more difficult trial so that He may perfect my love and my heart, and prepare me for the day when I am ready to be with Him.


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