Tag Archives: blogging

Gaining Locomotion

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I’m feeling a lot better, so I’m going to try and get back on track with this website. My goal is to post every Thursday and then gradually reconfigure the site to include useful news and additional content. I started this site so that I could make some kind of difference, but I think I lost my steam when I realized how many sites there are out there that have really useful information about lupus. I felt that what I could write or report could be found just as easily somewhere else, but I now wonder if that’s true.

This site isn’t just about lupus. It’s about how lupus affects not only the person with lupus, but also all the people that care about them. For as much as I would like it to be different, my wife’s lupus impacts my family more than any other factor in our lives. It is the single most discussed topic. It has an effect on what we do each and every day. I’ve gotten so used to it, that I don’t think about it anymore.

I mean it. I don’t think I think about Jenny’s lupus like I did a few years ago. It’s like living in a house next to a train track. At first, the noise keeps you awake at night and drives you crazy, but after a while, you just sleep right through the noise. Continue reading →

Fluorescent Lights Out

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I was going to try and make this particular poll go a bit longer, but I think we’ve all heard enough about fluorescent lights for now. 18 out of 19 people who responded have some type of adverse reaction to fluorescent. They are obviously not good for people who have lupus. I think we knew that already. About the only thing I have learned from this so far is how to spell fluorescent.

We don’t have any fluorescent light in the house, with the exception of the kitchen, which has these four rows of those banks of bulbs behind plastic translucent sheets. One of the things that I would like to do, once there’s money to do so, is to tear those out and install some incandescent down lighting.

On another note, I wanted to say thanks for those folks who have supported the site by using the amazon links (you don’t have to purchase the stuff shown as long as you start your search through the link) and those of you who check out some of the cycling advertisements. It’s pennies here and there but they do add up. Thanks!

New Fibromyalgia Blog

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I came across a relatively new blog that gives tips for dealing with fibromyalgia and chronic fatigue. Here’s a bit from a post about preventing brain or fibro fog:

  1. Always Keep your keys and purse on the same hook or in the same place.
  2. Make lists, prioritize, and complete them if you can while you are feeling better.
  3. Try to take on and finish important things during your best times without overdoing it by scheduling too much.

The blog, Fibromyalgia and Chronic Fatigue Tips, is a part of selfhelpmagazine.com and is written by Robin August, PhD.

The poll is doing quite well. I certainly have never gotten that many contributions to a regular post. I’m going to give it another week and then discuss the results, so if you haven’t voted yet, you should get on it.

Still Here

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I’ve had a hard time writing lately. I’m not sure why, because there’s a lot to write about. I just can’t seem to get much of it together. I know I’m tired, but I’m always tired, so I don’t see that making a difference.

After writing all those suggestions last month about being prepared to go to the doctor or emergency room, I was kicking myself yesterday for not having information about all of Jenny’s doctors. She had just had an MRI and was pretty sedated, and they were asking about where to send the information. I should have that information with me in my wallet, but I don’t. I’m going to try and figure out some way to do that without making my wallet look like a Big Mac. I’ll let you know what I come up with.

Jenny was recently sent some sun resistant clothes to try, and she likes them a lot so far. I’ll let you know more soon. I’m really glad summer is on its way out. The sun makes Jenny’s lupus flare like crazy.

I promise to write something useful soon.