The Weggie Book - tell your story time

[Sangye]

Yeah, that's how mine was, too. Also a general stiffness. If I stopped moving for even a few seconds, it was very painful all over to start again!

[Terri]

Ok, Sat. I went back to 10 mg from 7.5. So today is day 2 and even yesterday I had more energy, less pain but had trouble sleeping last night.
I'm going to call my doc in the am and see if he can prescribe me 1mg to taper more slowly. I'm also on 25mg of metx once a week. Does that sound about right?
Bactrim 3x a week, folic acid 1 mg

[Sangye]

Terri, what time of day do you take your pred?

I found that sticking to the same time every morning kept it from interfering with my sleep, even when I was on 40 mg. It's also helped my adrenals come online a bit faster, as our bodies naturally spike cortisol at our usual "wake up" time.

[Terri]

Sangye, I usually try to had my meds by 9 am, sometimes earlier if I get the chance.
I"m at work by 6:15 but not always do I have a chance to eat my breakfast before 8:30.
The week-ends I take them around 7:30-8:00

[Sangye]

Well the good thing is that as you get closer to 5mg, it won't interfere with your sleep anymore.

[jola57]

Terri, I'm at 3mg pred, just started a week ago after being more than 2.5 months on 4mg. Having stiffnes if not moving for a while and just general malaise, but otherwise feeling good. I am still on 10mg mtx. I take all the meds in the morning and mtx, sunday morning once a weed. With the lower pred i fing I have much less sleepless night, hurrrray. I take also vit b6, b12, d , calcium, folic acid, nexium everyday for stomach and actonel once amonth.

[marta]

Hey guys,

Just wanted to mention something on the book. If you haven't started yet, here's something that I don't think I put down well. If you can, try and have your story fall under the categories in the outline that would be super helpful. I still think it should flow like a story, but if you don't mind throwing the category headers in there to break it up that would be great (for those who have submitted don't worry about it, I will make it happen with my awesome, creative design powers - ) but if you haven't started yet that would be super helpful. My thoughts are based on trying to get two things done with the stories.

1. Have it be a real human story with the story part of it. When people are settled into being Weggies, they can sit back and read the humanity behind the disease. BUUUUT I also want it be a

2. Reference guide for the newly diagnosed who are in no state of mind to be reading personal stories. If we all organize the stories so that someone new to this game could at a glance look at each of our stories for something they are interested in - say meds we're taking or took at onset vs a flare vs maintenance (just as one example.) They can bring the various cases to their doctors and that way through our experience we're not only supporting the newly diagnosed but maybe even teaching a doctor or two what can be used in variuos cases based on the many variables this disease throws around like dirty laundry.

That was my cho-choo of thought when I was organizing the outline. I want this to end up being the 'go to book' for Wegener's and the more user friendly we make it - for various audiences and for various stages in their experience with WG - the more successful it will be.

If any of you have any questions, please don't hesitate to contact me. If I sound like I'm totally out to lunch, you can call me on that too.

[jola57]

I just need to organize and remember how it was.

[Thakator]

Back to the "eggies" portion of this thread. Yes, I've most assuredly heard about that old grass on the other side of the fence thing, but - - becoming an eggie sounds somewhat more appealing than being a weggie. No complaints though, just speculating.

And, Marta, if you are still reading this - - have you had the pneumonia vacine? It only protects you from one type of it (the contagious form, I think) and your condition may not allow you go the vacine route, but it does afford some protection and may be something to look into if your doc hasn't already covered it with you. My rheumy insisted on my getting it before she put me on the WG meds. Ron

[Minneapolismark]

I'd like to play too. Before I got sick I was a co-author/contributing author to a couple of books for Microsoft Press and had a blog with about 50,000 readers at its peak. I don't have much energy, but it would be wonderful to start clicking the keys again! Mark Schneider's SharePoint Taxonomy and Governance Blog