She’s tried all kinds of medications for reflux over the years. The last one that was prescribed for her was Zegrid, but that is no longer covered by insurance because it is available over the counter. I still don’t understand that logic. We pay a bit more for it now since it’s not covered, but it still seems to do a good job.

Things that seem to help in addition to the medication are:

• Avoiding carbonated beverages
• Reducing caffeine
• Avoiding late night snacks

My wife has a terrible time following any of these tips. Thank goodness for medication.

Things just continue to pile up. We’ve had car trouble in the thousands of dollars, because of maintenance and accidents. Stuff is falling apart around the house. Jenny had a severe reaction to Arava which was very scary. My work is insane, and when I say insane, I mean crazy, like dressed up like Mayor McCheese shooting up a Burger King crazy. It’s all too much for me, I guess.

Knowing that it is never smart to ignore symptoms, I went to the doctor to see why I’ve been having chest pain. I went expecting to hear, “Oh, you are stressed out. You are fine.” That’s what I expected, but that’s not the answer I got. I got, “Oh, well, you may be having some issues. You need to go to a cardiologist.”

Seriously? Now? I don’t have time right now.

It’s getting close to Mother’s Day and I thought I would dedicate the 100th post of this blog to my wife and all the other mothers out there with lupus.

My wife does her best to be a good mom, and though she may not always feel successful, I think she’s wonderful.

This blog celebrates my Jenny and all the Jennys out there in the world that try and balance their life while dealing with chronic illness.

A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. ~Washington Irving

Happy Mother’s Day Jennifer, a few days early.

There’s just so much to do and so many activities going on around here. It’s hard to stay sane sometimes. It’s like that for everyone, I suppose. Having to be concerned about Jenny’s lupus just makes everything that much more difficult.

I’ll tell you what. Since I’m so burned out right now, I will just post a lolcat.

see more Lolcats and funny pictures

I know lolcats are dumb, but sometimes they make me laugh when nothing else will.

I’m really tired and this is a very lame post.

Just a short online search revealed a very interesting link to a web chat transcript on The Lupus Foundation of America site. Dr. Laura Coleman is a registered dietitian, and had this to say in response to a question regarding specific foods causing a lupus flare:

As for whether there are any specific foods that trigger a lupus flare, the answer is unfortunately rather vague. Some foods may trigger a flare for some people but not others, and some people may not have problems with any foods at all. That being said, patients can pay attention to their diet, and if a specific food is suspected of triggering a flare, they should require that a pattern of ingestion followed by worsening occurs at least 3 times before eliminating a food from the diet. Even if it appears that a food is causing some trouble, it could be that another factor, such as the source of the food, use of chemicals or other preservatives, or even the interaction of several foods, is the problem.

I recommend that you read the entire transcript, which is available here.

I also found a very helpul site on Food Allergy, which offers some useful advice.

My wife has recently had to drop one of her local doctors. He was a pain specialist. I know this because his office specialized in being a pain in the ass. Maybe he is actually a pain in the ass specialist. I suppose I should check those hanging diplomas next time.

This guy’s office must at some point have decided to ditch any patient that had a condition beyond what they felt that they could handle, conditions like, oh I don’t know, lupus, for example. They could have said, “Look, we don’t want to treat you anymore because we feel that the amount of medications you require, coupled with the intricacies of your illness, may result in us getting sued somehow because we don’t really understand your illness or how to best treat it and we don’t really want to bother working with your lupus specialist because, you know, that would require emails and phone calls and stuff. The doctor would really just rather throw some pills at people and then go golfing because, you know, he’s worked really hard for many years and he would like to take it easy before he retires in a couple of years.” They could have said that, but didn’t. Instead they decided to make more and more outlandish demands on scheduling and testing until my wife would decide on her own to go somewhere else. “We have to reschedule your appointment. Oh, that’s not a good time. Well, that’s all we can do. If you can’t make it at that time then we can’t refill your prescription.” Crap like that was happening more and more often. They wanted to charge us for drug tests that were not covered under our insurance. They became more and more anal sphincter-like as my wife did her best to jump through all the hoops they were setting up for her to jump through.

Finally, my wife had enough and told them to go to hell. I don’t blame her at all.

Now she’s going through a difficult readjustment as she changes to medications that we can get through our primary care physician and her lupus specialist. I think it will work out for the best in the long run, but it’s really annoying when people don’t do the job they are supposed to do.

I was driving my family home from dinner last weekend, and my wife and I had started talking about the old television show, My Favorite Martian. I have no idea why we started talking about this, but I do remember that we started the whole thing by talking about The A-Team television show, and I really have no idea how we got from The A-Team to My Favorite Martian

Maybe it was because Uncle Martin, Ray Walston, was always trying to fix his spaceship, and my six-year-old was talking about spaceships. I don’t know. Anyway, we were talking about Ray Walston and I told my son that the person who was in the show with him was Bill Bixby, who later played the Hulk on television. Well, he didn’t play the part of the Hulk, I told him, he played the part of Dr. Banner, who would change into the Hulk. The part of the Hulk was played by Lou Ferrigno.

As we were getting out of the car, my son was saying something about who could have laid the Hulk. Obviously, he misheard laid for played when we were talking about it. While my wife and I look at each other and smirk because he’s six and doesn’t understand how funny it is that he’s talking about the Hulk getting laid, he continues on talking about what kind of creature could have laid the Hulk.

He finally said, “It would have to have been a really big bird, and maybe green.”

We laughed really hard. He’s very cute.

So I was thinking about what I was going to write today, and I was considering talking about why lupus is called lupus, since a friend of mine had recently asked me that question. I’ve heard all kinds of explanations, including that the malar rash looks as if someone has been hit in the face with a wolf. I’ll buy the hit in the face by a wolf, but not with a wolf. Who throws a wolf at someone? Anyway, I was looking at the the Wikipedia page for lupus and discovered that Ray Walston died after a six-year battle with lupus. How crazy is that? How’s that for six degrees of Kevin Bacon? I got from Mr. T back to lupus in only a few steps. I win.

Well, if such a application exists, I have yet to find it. I’m afraid that I may just have to create one.

Any system for charting or logging health information should have some portability and while I would love to be able to use my phone for this, I don’t think I want to have to transfer information from my phone into a spreadsheet, which is where I think the data will eventually reside. I’m going to start with a small notebook, like a Moleskine Ruled Notebook, which I’ve used before to record information on projects or things I’m writing.

Since there’s so much information regarding medicine that taken daily, I figure what I will do is only record changes in medicine. For example, if a new medication is added, I will make a note of it, or if Jenny forgets to take something on a particular day.

I can track particular symptoms, like fever or nausea, by just making a note of it on that day. The trick is going to be how to do that without having to keep too much detail.

I am also going to try and record things numerically using a scaled score. This is all pretty subjective, but maybe it will be helpful the next time something happens and we are wondering why.

All of this data will have to go into a spreadsheet. If I create one using Google Apps, then I will share the template with anyone who is interested.

I used to say, “Well, you’ve got lupus.” However, that is not what she wants to hear.

She knows she has lupus. She knows as well as I do how lupus works. She knows she has fibromyalgia. She knows she has rheumatoid arthritis. She knows.

I have a hard time with these questions. I know she knows, so the trick is to figure out at that moment, what does she really want? Sometimes, she really does want to know why something is hurting that doesn’t usually hurt. The problem is, of course, that I am not very good at figuring this stuff out.

More often than not, I make the mistake of just giving a straight answer. Your back hurts because you moved furniture, or you’re tired because you didn’t eat anything today other than an apple and some toast. Even worse, I usually add something like, “…even though I told you not to” or “in spite of the fact that I reminded you.” I know… I’m working on it.

Sometimes she just wants to know that things will get better, or that the pain is temporary. I can certainly tell her that, even though I don’t know if it’s true. I don’t know that it’s not true, so I feel like I’m still being truthful.

The real problem for me is that I want to be able to give her an answer, you know? I want to be able to explain what is really happening, because that is the kind of answer I would want. But my wife is not like me. I am all wires and numbers and she is made up almost entirely of emotions and intuition. My very factual answers do little to make her feel better. Instead of reminding her about how connective tissue disorders work, I sometimes think it would make her feel better if I said, “Well, it’s a full moon… that’s why.”

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. Well, I think I’ve been sleeping through my wife’s illness for some time now. I haven’t read anything about lupus lately. I’m certainly not on top of what’s going on in lupus research. I’ve just gotten used to how things are. I stay on top of her medicine. I try and keep her from overtaxing herself. I try and reduce some of the daily stress and make sure she gets enough rest, but it’s all so automatic anymore.

I am going to start thinking about lupus again. The train is still out there and I’m not planning on moving to another house. I love my wife so damn much. She’s beautiful, smart, stubborn, and always full of surprises. She’s my best friend and a great mom, but she’s got this stupid illness that weighs on her daily, like ghostly shackles that come and go at their whim. Some days are okay. Some days suck. I’m a reasonably intelligent person. I should be able to figure this out. I should be able to make this all work better. I know there are other people out there doing the same thing. Why not share our ideas, our successes, our fabulous failures, and our daily struggles?

Now I just have to figure out how to do that every Thursday.