Tag Archives: support system

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 →

My Son the Doctor

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Jenny was having a pretty rough morning. My son, who just turned five a few weeks ago, said this to her this morning on the way to preschool.

Don’t worry I’m working careful, hard, and I’m going to school really long and read my body books 145 pounds* so I can get my tools and fix your lupus and kidneys. I think you don’t have a strainer**. I wanna grow up and take care of my momma. I will build you a strainer.

That’s about all I can write about this, because I will look really stupid if I get teary-eyed sitting at my keyboard. He’s a really good boy.

*My son measures everything in pounds for some reason. I think it started with the phrase, “Me too”, which he would hear someone say and then he would respond, “Me twenty-four”, or something like that. He thought too was two and I think he also thought the numbers were a measure of how much you were in agreement with something. Then he learned about pounds as a measurement at school, and so now he measures effort, work, love, etc, in pounds. Time is about the only thing he doesn’t measure in pounds.

**My son is fascinated by how the body works. In one of his books, the kidney is described as a strainer, like the kind we use when we drain the spaghetti.

A Wish for a Better Year

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I wanted to thank everyone for their support through the last couple of months. My wife is feeling better, even though the doctors are not sure what type of pneumonia we were dealing with or even if it was pneumonia at all. Lupus is so bizarre.

I would especially like to thank the great people from our local lupus support group, who brought dinner for a week after she got out of the hospital. You hear about people doing things like that, but it’s a very humbling experience to be the recipient of such amazing generosity.

I expect that I will get back into the swing of writing soon, but it’s just been a lot of work keeping things going around here.

Thanks again, and have a Happy New Year.

Jeff

Establish a Support System

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Having a good support system is essential for any family dealing with chronic illness, and I wish I could say that we had one. Today is another one of those days when I have to take a day off of work to get my wife into the doctor. She is going into her fourth week of dealing with pneumonia-like symptoms, and in my opinion, the doctor’s treatment has been less than adequate. Last night, I was actually afraid that she had died, just because I realized I hadn’t heard her cough for a while. I am seriously so stressed out right now, I could… well, nothing, because if I break down the whole house breaks down, so I keep going. Continue reading →