I grew up in the military. I knew what those things were before normal people used them on a regular basis. What's my snafu that has things totally FUBAR? ("FUBAR", for those who don't know, is "Fucked Up Beyond All Recognition")... my fibro medicine.
Remember that new dose of Gabapentin I was going on about a few weeks ago? I finally got the pills in the mail- 100 mgs to take with my 300 mgs. In the same way, I start with adding it to one dose- the evening one- so it would be one dose at 400 mgs, then two 300 mg doses. Then after a week, add it to another, so it would be 400 mgs, then 300, then 400. And after all that was dandy, take it with the midday dose and be 400 mgs across the board. Except, two days after I got the 100 mg capsules in the mail, I noticed I was running low on the 300 mgs. I called the VA pharmacy to ask if they were coming, or if they had even been ordered. They were not and they had not. The pharmacist was cool about it and transferred me to the proper extension and I told my story to the person just as we're supposed to do in this situation. That person (a nurse) did her job and put the request in and then we waited...
During this waiting, I started to cut back my doses, because we're not supposed to up and stop taking Gabapentin suddenly. I cut it back to the 300 mgs for three doses, then I cut the midday dose. After a week of that, I cut the morning dose down to 200 mgs so I was taking that in the AM and 300 mgs in the PM. Now I'm down to 100 mgs in the AM and 200 in the PM.
After ten days (standard prescription waiting time and I was on two 300 mg doses still), I called the VA to see what was up with the whole thing. Apparently, nothing. Some sort of fucking glitch in their computer system or something completely fucked me over. And it fucked me over hard and without buying me dinner first. And during this time, my sleep has been completely screwed up. I can't sleep because every time I move, it hurts and I wake up. Or my skin itches so bad I can't lie still enough to fall asleep. So much for exercising to lose any fucking weight.
That phone call was on Monday. They said they'd call me back. They did. On Wednesday. There was some initial miscommunication but now it's squared away and the 300 mgs should be on it's way to me within a few days (if it goes well, I'll have it by the end of next week, but I'll believe it when I see it). So, that little snafu has FUBAR'd my fucking fibro treatment. And my sleep is FUBAR.
Gravity has been pulling me down extra hard. The air makes my skin hurt. My entire body is a sensitive bruise. To compare, men, think about getting kicked in the balls. Yeah, that hurts, right? Now, think about the next few days... how when you're sitting in a chair and you move your leg and your Levi's brush against your jiggly bits. That shudder of pain you feel? That's what my entire body feels like right now. I still prefer my analogy of being thrown from a horse. In the last week, though, I've come to realize that it only works for people who have been thrown from a horse and of those people, it only works if they don't get thrown from a horse on a regular basis.
"Wait," I hear some of you saying, "You know people who get thrown from horses on a regular basis? What's that, rodeo cowobys?"
Nope. Much cooler. And those of you who know me- say it with me- jousting knights. Yeah, I know people who joust for a living. And for them, getting "thrown" from a horse is all part of the job. One of my favorite knights- Sir Mauldron (not his real name)- was thrown from a horse the other day. Face-planted right in the jousting field. Blood and all. He bled real blood in the theatrical joust. But to him and people like him, getting thrown from a horse doesn't hurt them all that much.
They're much tougher than I am. The last time I was thrown from a horse, I was sore for days afterward. Of course, when I was thrown, I got right back on the horse and continued riding- which is what you're supposed to do. And here I sit, in itchy, pain-filled agony, telling you this nonsensical story about how much I fucking hurt and how much I love jousters. Because even though I'm up in the middle of the night and the Vicodin hasn't put any kind of dent in the pain, I'm still getting on that horse again. I'll get up tomorrow and do whatever it is I do. Because I have to.
The Janesville Renaissance Faire is this weekend and I will not miss out on that. It's the start of the faire season and I'm going to see faire friends I haven't seen since October. And I won't let this "invisible" disease keep me from enjoying myself.
Oh, by the way, part of what I do every day is this- Pahz Photography
And then there's this- The World According to Mauldron
Oh, and I do some photo work for Shake Hands With Danger Radio
So a majority of what I do every day can be done from this computer chair. I'd rather be on horseback... at least I'd have a reason for feeling this fucking sore and exhausted all the time.
Showing posts with label shameless plug. Show all posts
Showing posts with label shameless plug. Show all posts
Wednesday, May 11, 2011
Wednesday, April 6, 2011
Three month Follow-up
Good news, the pain in my hip/thigh isn't anything serious. Just bursitis. What's that? Inflammation of the bursae. You know how you take care of inflammation? With anti-inflammatory medicine. That I can't take. Because when I take it on the long-term (meaning more than twice in a row), it causes me to swell up. That's right, something that's supposed to take away the swelling causes me to swell.
So, for the fibro, we're going to increase the Gabapentin dosage. A little at a time. An additional 100 mgs at bedtime for a week. And if that helps, then I can do the same with the daytime dosages (just like last time, no faster than once a week). This is the reason she gave me this particular drug, because we can up and down the dose by a wide margin before we can call it a failure.
Speaking of the good doctor, my next visit with her- in three months- will be my last, with her. She's graduating and moving on. Yeah. And I like her. At least now I know if I get stuck with another lousy doctor, I can demand another. No more two-year limbo till someone helps me.
On this visit, we also addressed the humidity issue in that the humidity levels are a key factor in fibro patients' lives. The disabled guy doesn't believe me when I say I can tell when the humidity is high. I even said, "Trust me, it's at least 75%..." and he checked, it was 80%... He claims it was because I looked online. I can't convince him that the real reason is because I can feel it in my muscles, in my skin. When I feel exhausted and weak, as if I'm being pulled to the ground slowly... that's from the humidity.
As I sit here and type this, the sun is going down. And it looks like it will be a brilliant sunset. The only problem is that I'm an hour into my pain meds and I'm listening to Shake Hands with Danger Radio online... so even if I wasn't drugged to the gills and could drive out and take photos, I wouldn't take these headphones off. And the cord isn't that long. I only mentioned it because the sun is starting to blind me from the left side because someone opened the blinds on the door.
But I digress...
No, I don't, actually. I'm done for now. Back to the frustrating project of trying to create decent business cards. I've actually created them already. I can't get them tweaked just so and aligned properly.
For what? you ask... For my etsy shop... Pahz Photography...
So, for the fibro, we're going to increase the Gabapentin dosage. A little at a time. An additional 100 mgs at bedtime for a week. And if that helps, then I can do the same with the daytime dosages (just like last time, no faster than once a week). This is the reason she gave me this particular drug, because we can up and down the dose by a wide margin before we can call it a failure.
Speaking of the good doctor, my next visit with her- in three months- will be my last, with her. She's graduating and moving on. Yeah. And I like her. At least now I know if I get stuck with another lousy doctor, I can demand another. No more two-year limbo till someone helps me.
On this visit, we also addressed the humidity issue in that the humidity levels are a key factor in fibro patients' lives. The disabled guy doesn't believe me when I say I can tell when the humidity is high. I even said, "Trust me, it's at least 75%..." and he checked, it was 80%... He claims it was because I looked online. I can't convince him that the real reason is because I can feel it in my muscles, in my skin. When I feel exhausted and weak, as if I'm being pulled to the ground slowly... that's from the humidity.
As I sit here and type this, the sun is going down. And it looks like it will be a brilliant sunset. The only problem is that I'm an hour into my pain meds and I'm listening to Shake Hands with Danger Radio online... so even if I wasn't drugged to the gills and could drive out and take photos, I wouldn't take these headphones off. And the cord isn't that long. I only mentioned it because the sun is starting to blind me from the left side because someone opened the blinds on the door.
But I digress...
No, I don't, actually. I'm done for now. Back to the frustrating project of trying to create decent business cards. I've actually created them already. I can't get them tweaked just so and aligned properly.
For what? you ask... For my etsy shop... Pahz Photography...
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