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.

In order to make that a little easier, I’ve added a sidebar widget that provides updates from the Lupus Research Institute. If you move your mouse over a particular news item, you will be able to see a short snippet of the article. If it seems like something you’re interested in reading, you can click the link and read the actual article.

I spent a little time on the Lupus Research Institute website yesterday, reading some comments made by Dr. Bevra Hahn regarding the new lupus drug Benlysta:

These new results show that administration of Benlysta for one year, in addition to standard treatments for SLE, resulted in substantial improvement in almost 60% of people, compared to only 46% in the group that received placebo plus standard care; the improvement included better quality of life.

I had the good fortune to meet Dr. Hahn a few years ago at a health conference where she was featured as a guest speaker. I was really impressed with her. I have nothing but great things to say about the medical staff at UCLA. It is a very long drive from Fresno to Los Angeles, but it is worth it to get such great medical care. Jenny’s rheumatologist is fabulous.

I hope the sidebar widget makes it easier to stay up with the latest lupus news. I don’t want to overwhelm the site with too much information, but it’s good to stay informed.

I found this on the Lupus International website:

NEUROCOGNITIVE DYSFUNCTION is also a common and overlooked clinical feature of lupus estimated to occur in up to 80% of affected individuals. The diversity of cognitive impairments parallels the considerable variability of the disease process. Deficits in learning and/or memory, reasoning, verbal fluency, motor function, basic attention, and information processing speed are the most consistently described.

This is precisely the kind of things my wife’s been dealing with for years, although never all of them at once.

In general, objective tests of cognitive performance are unrelated to perceived stress, depression, and anxiety, suggesting that cognitive impairment may be a primary disease manifestation consistent with other immunemediated disease with neurologic involvement (e.g., acquired immune deficiency syndrome and multiple sclerosis). Alternatively, the relationship between depression and cognitive performance may be determined by more subtle aspects of lupus, including sleep disturbance, fatigue, and pain as has been suggested in studies of individuals with multiple sclerosis.

We have often wondered if it was just stress or if things were just too busy, but there have been many times where things weren’t that stressful or busy, and my wife still had cognitive issues.

I remember Jenny’s rheumatologist talking about how vasculitis can affect cognitive function by causing small lesions in the brain. I was reading about vasculitis on the Lupus Foundation of America website, and I think that this might be the reason for much of what has been going on for the last couple of months.

We are going to consult with Jenny’s lupus specialist and see what needs to be done. Has anyone else dealt with this?

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.

I will write more on this later, but I wanted to at least get the ball rolling on this topic. We have had a lot of trouble over the last six months with my wife’s lupus medication. She stopped the Cellcept because she was having headaches and problems with acid reflux. Then she moved on to Imuran which we thought was fine, but ended up creating flu-like symptoms that took forever to tie back to the Imuran. We seriously thought she was just getting the stomach flu every few weeks. Very soon after she stopped the Imuran, the vomiting and nausea stopped and everything was fine, except that her counts were all messed up again because she wasn’t taking any immunosuppressants.

So what do we end up going back to?

That’s right, she was put back on Cellcept, which lasted about a month before she couldn’t take the headaches anymore.

There’s got to be something else. Methotrexate was a total disaster, so that’s out. Cyclophosphamide is another option that hasn’t really been discussed. I assume there’s a reason for that. I will have to ask my wife to check with her doctor on that one. But wait, isn’t there some new drug? We keep hearing about Benlysta, but we don’t seem to have any access to it.

Be aware that my depression is a chronic condition that I have struggled with since I was an adolescent, and is not related to the stress of my wife’s illness. Dysthymia is a very mild form of chronic depression, which does not usually prevent an individual from functioning normally, but rather just creates a person who is just kind of “meh” about everything. I don’t usually have any deep lows, but then I don’t really have any periods of real joy or elation either. While I have tried medication in the past, I choose not to do so now. While it adds a great deal of fun to my emotional equation, it also inhibits a good deal of my ability to handle difficult situations, like dealing with my wife’s illness.

I have been able to find a balance of activities that help keep me happy and still allow me to be a very stable and dependable husband and parent. It’s only when I go long periods without those activities that I can dip into an unmanageable depression. I find that awareness is key. If I am really aware of my mental state, then I can start to move things in the right direction.

I know this is a very long explanation of why I haven’t updated this blog in a while, but I feel like it is a positive step for me to acknowledge what I am going through, and could encourage others who may be experiencing the same kind of feelings.

Just remember that there is always something you can do to make a difference.

What I don’t like is thinking about losing my wife to lupus. Mrs. Vodden spent the last five years of her life in a hospital in England. She was only 46. I know my wife doesn’t like to think about dying. We are both in a bit of denial about her disease. We keep assuming that at some point she will just get better, or some new medicine will work wonders. I don’t really know that it’s such a bad thing to think that. What’s the alternative? Does thinking about death make anything better? I don’t think so. Yes, we need to take lupus seriously, but life can’t just be about avoiding death. Everyone will eventually lose that battle.

I just don’t want her to lose that battle anytime soon.

The real problem with Jenny throwing up and not being able to keep anything down is her medicine. If she goes too long without pain medicine or even some of the lupus meds, she starts to get even worse.

I never know what to do for her, other than taking care of the kids and giving her stuff if she asks for it. My daughter is old enough to help out, and she does help a lot, but my son is only five, and gets very upset when his mommy isn’t able to get out of bed. He wants her to be better but he doesn’t know what to do. Well, I don’t either.

We had planned a party for Saturday evening, and I was going to cancel it, which is what I usually do in this circumstance, but I decided not to cancel. We talked about it, and she would have felt terrible, AND still been too sick to get out of bed. She stayed upstairs in bed and we went on without her. It wasn’t nearly as fun without her, but what are you going to do? It was a very short gathering, but still, that’s no fun.

On Sunday, I had to drive the kids to a soccer tournament that was three hours away, so my poor wife was alone on the couch with some apple juice and crackers for most of the day.

She does appear to be feeling a bit better now. I’m pretty exhausted. Hopefully, I won’t get sick as well.

We treated it with medication and ice packs, but it was a very stressful experience for my wife, who obviously has enough to deal with as it is. We were trying to think about what could have triggered the episode, and she told me she had gotten a B12 injection when she was at physical therapy. We did a little searching and discovered that these types of headaches can be a side effect of a B12 injection.

It’s odd, but I also remembered that she had a similar, but much less severe reaction when she was taking B12 in pill form sometime last year. I should really be better about keeping a more complete record about this stuff.

I was just curious if anyone else had a similar experience with side effects from a B12 shot or any other type of high-dose vitamin interactions.