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Started a new injectable replacing the bi-weekly Humira with a weekly Enbral. At first it seemed like the Humira was going to according to early indications but it may had more to do aith the weather, who know? All I know is the pain is at a constant level that has me getting out of bed as little as possible and praying that it will end soon. My outlook isn't very hopeful right now and could use a little encouragement. I take enough morphine a day to knock most ppl out (120mg+) and it barely keeps the edge off the pain so I'm not screaming all the time. And to make matters worse, the morphine makes it difficult to sleep! I get 2 -4 hrs a day average and if I'm lucky an extra 2hr nap. It's like it won't let me sleep untill I'm exhausted and then when the edge of the exhaustion is off 2hrs later I wake up again.
I wish something would happen so that I can do some work even if it's here at home. The financial strees is really getting to my wife and feel like I'm just a great burden to her that she shouldn't have to deal with. Keep her in your prayers also.
About the only time I don't feel the pain as much is when my mind is occupied doing something else such as reading or playing FuMafia. So thank you all for taking time with me to teach me how to play and chatting with me in the turfs. You don't realize it but you're the best medicine I've got. Love you ppl (h)
Tuesday night was a pretty rough flare. Even after taking almost double the amount of Morphine! I was awake all night racked with pain and it didn't subside until the morning after. There's a good chance that it was brought on, believe it or not, by having Rice 2 nights in a row with supper! Any form of gluten can increase inflamation but it seems to me and others on the Ankylosing Spondylitus Awareness Project (ASAP) FaceBook page that Rice in particular over indulged seem to be the worse. I know that I didn't do anything physically to cause my back to hurt like that.
This disease SUCKS!!!
If you haven't read my ABOUT ME let me recap. Ankylosing Sponylitus is a Gentic Disorder (so I probably gave it to my daughter as well) that causes inflamation in the joints, particularly in the spine and fusing of joints, Right now my Sacro-Illiac Joints are about halfway fused. It usually takes 8-10 YEARS to be properly diagnosed while in the mean time most physicians are saying the pain is in your head or think you are just trying to trick theminto giving you pain meds. And if that wasn't enough, this disease is incurable. It's life sentence of pain.
There are times when I ENVY Cancer victems and I'm not the only one with this disease who have done so. Reason being that for cancer patients their suffering is only temporary one way or the other. Many times like last night I wasn't sure if I could handle it any more or why I should.
Pray for me that I have the strength to go on.
I've noticed a lot of girls one here romanticize pain but I wonder if they would still feal that way if they had to live with it 24/7/365. For people like me that live with chronic pain there are no "Good Days" only "barely bearable" where you plod on and hope to accomplish something to "intolerable" when you just want to give up. The amount of Morphine I take would make most people incapable of stringing together a complete sentence yet for me it just takes enough of the edge off of the pain so I'm not curled up in bed wishing I were dead! Today was the kind of day where it hurt to do anything but some things had to be done. Every pothole was jarring and each accumulated to the last so by the time I was home I just crawled in bed and quit.
Let me try to explain the type of pain I'm talking about. If you've ever head a broken bone you might be able to understand. It's like a break (braket?) that has been healing for about a week or two and then constantly banging it with enough force that it NEVER HEALS. Or a Sprain that never heals. And because it's my lower back there is no way to keep pressure off of it like when using crutches or a sling.
That's all for now. Thanks for taking the time to read and for caring enough that you took the time to.
