My Wife Has Lupus

I thought I would wrap up the medication series by talking about what happens when you get medication overload. I hate taking medicine. I will deal with a headache all day, just because I don’t like taking medicine. Now I think of my wife, who has to take a couple dozen pills every day, and it doesn’t surprise me that occasionally she just doesn’t want to take anything ever again.

There have been numerous occasions over the past decade when my wife was reluctant to take her lupus medication. In some cases she either limited the amount to a lower dose or stopped taking the medication entirely.

In my experience, there have been three reasons that my wife has been resistant to taking medication since I’ve known her. She’s either been afraid of possible side effects, afraid of becoming addicted to the medication, or has been afraid that it was the medication that was causing some of her problems.

The most common medication with side effects that has caused her concern is Prednisone, which has been an important part of her treatment in various dosages, but trying to convince a woman to take large amounts of medication that can cause sudden weight gain, increased hair growth, fragile skin, and make your face swell up, well, that’s a tough sell.

Her concern with addiction is associated primarily with her pain medication; although, she has also been concerned with taking sleep medication for long periods of time as well. I just try and remind her that while her pain medications should be handled with caution, her doctors have prescribed them for a reason. She needs to be able to keep the pain in check so that it doesn’t make her overall condition worse than it is already.

It is usually through the often well-intentioned advice of a colleague that my wife becomes concerned that it is actually her lupus medication that is causing her lupus. It is often accompanied by offers to sell her some type of juice or herbal supplement. Reviewing her medical history and initial diagnosis is usually enough to get her back to taking her medicine.

This was re-written from a draft of an article that I wrote for Lupus Now.

We’ve encountered a number of problems as far as dealing with medication is concerned. Today, I’d like to talk about was to store and organize the huge amounts of lupus medication you may have sitting around.

Since we have small children around, one of the first things that I did was to buy a small safe. I know that seems extreme, but I got it on sale at Harbor Freight on sale for $30. We had been keeping everything on a shelf in a cupboard with a child safety lock, but I decided to go with the safe for a number of reasons.

• Many lupus medications are deadly if taken in excess or with other medications.
• You would be surprised how some of this medication, especially the narcotics, can suddenly sprout wings and disappear. We’ve never had a whole bottle stolen, but we noticed a few pills missing here and there when we would travel or had lots of people in the house. I know that’s sad, but it is true.
• I think it makes a difference for the kids to understand that the medicine that mommy takes is not like the medicine that they take when they get sick. By putting it all in the safe, they know that it’s dangerous.

Now that the medication is stored safely, you need to have a way to organize it so that you can keep track of it throughout the day, without spending too much time on it.

We have tried a number of pill organizers over the years, but the MED SUN 7 Day Large Medication Planner that we use right now, has been the best of the lot. It has seven large detachable bays with sliding tops that are labeled with the days of the week. Each bay has four compartments to place medication that is taken at different times during the day. All of the bays fit into a tray with a lid that keeps everything together for the week if you are traveling.

My wife and I sat down and went through all of her medication and I typed up the name and dosage information and put it on the top of the lid so that we don’t get confused about what she’s taking. I don’t know about your situation, but my wife’s medication gets changed often.

I usually put together all of the medication for the week and then my wife takes out her medication for the day and will carry that around with her. Having to do it only once a week makes it easier for us. It also helps to keep track of what medication needs to be refilled. If a particular medication is going to run out during a week, then I take the bottle out of the safe and set it on my dresser to remind me to refill it.

I hope that this was helpful. Please feel free to contribute some ideas on how to deal with stuff like this, and thank you for your support over the past few weeks.

There are times when I just can’t do everything. My wife is still having some flu symptoms and is having a hard time. I had to take a day off of work at a very bad time for me. This is really the busiest time of the year for me, and I don’t mean this time in general, I mean last week and this coming week specifically is the most stressful and busiest time of the year for me.

We will get through it and everything will be fine; however, I have put some posts on hold until I can have some time to sit down and write again.

Today was not a good day. My wife starting throwing up early this morning and was soon also having really bad diarrhea. This kind of thing is awful for anyone, but for a lupus patient, it’s even worse. The major problem was that she couldn’t take any of her medication. If you are used to taking high doses of pain medication throughout the day and you don’t get to, that’s not good. Really not good.

I did my best to keep her from getting dehydrated, using ice chips before moving on to water. She seems to be feeling a little better, but now she has a whole day where she’s missed most of her medication.