Monthly Archives: July 2007

CellCept

Posted on by
874

Considering the amount of medication we have to deal with, it’s rare to get excited about something; however, I thought this was good news. The experimental drug, CellCept, has recently been granted fast track status with the FDA according to Reuters News Agency,

The FDA’s Fast Track designation is designed to speed up the application and review process for products that have the potential to address a serious or life-threatening condition. There has been no new approved treatment for lupus in the United States in over 30 years…

My wife has been taking CellCept for almost two years Continue reading →

Home Improvement

Posted on by
436

My wife’s fibromyalgia, rheumatoid arthritis, and back problems require that she have water based physical therapy, so we are considering having a small pool put in our backyard. Considering the financial strain this is going to cause, I’m investigating what kinds of options we have to help finance the installation. Continue reading →

Spoon Theory in Action

Posted on by
762

If you are not familiar with Spoon Theory from But You Don’t Look Sick? then I will summarize it for you. Basically, someone with a chronic illness like lupus has to make choices every day about how to make the best use of what energy they have. If they use more energy than they have available, they will probably pay for it the next day.

The problem for us as a family is trying maintain a balance between coping with the effects of lupus and having a normal life. This morning my wife took the kids to the zoo with a friend. This is a totally normal and fun thing for a mom to do for her children, but when the mom has lupus, it’s a major undertaking just because of the sensitivity to sunlight. Considering that taking a group of kids to the zoo would wear out a regular person, you can understand how it totally exhausting it was for someone with lupus.

My question is how do people manage this balance between the acceptance of the illness, and the day-to-day business of life?

Insomnia

Posted on by
989

My wife often has trouble sleeping. It seems like she either can’t stay awake or she can’t go to sleep, and this cycles back and forth every few weeks. Once she goes to sleep, she can stay asleep, but it’s the getting to sleep part that’s often difficult. I suspect that the insomnia is related to certain medications, but it may also be related to the illness itself. Like many lupus sufferers, my wife has tried a variety of sleep aids, including Lunesta and Ambien; however, they tend to work well for a couple of weeks and then lose their effectiveness. Continue reading →