May 9th

Well, I wish I could say that we saw some improvement today, but sadly not much happened to get excited about. Christine woke up with a very swollen knee that she couldn't bend, and so she had a very difficult time walking to the bathroom. She told me that it felt like someone had smashed her knee with a baseball bat. They called the doctors in, but nobody really had a good explanation. Her ankles and calves were more swollen as well. They tried icing everything with ice packs, but they heated up too quickly. Mom finally had the idea of getting her one of the cuffs that fills with ice that she had when her ACL was operated on, and while it didn't seem to do much for the swelling it did help some with Christine's discomfort.

Cindy came today, and she and Mom brought lunch back to share with Christine from Whole Foods. While they were away Christine had a bit of a maintenance catastrophe when a ceiling panel dislodged and nearly crashed on top of her! They had move her bed way over to prevent anything dirty from falling down on her while maintenance fixed the problem. After lunch the therapeutic touch lady came by, which is always so relaxing for Christine. I don't know what that woman does, but its great.

Rebecca and Lauren visited her tonight, and I came in around dinner time to take her down to the cafeteria to eat. Mom came with us because Tommy hadn't arrived yet (the two of them were going to go out to dinner). Unfortunately, as soon as we had sat down at the table to eat Christine started uncontrollably shaking. It was the most bizarre thing to witness. First I noticed that her hand was shaking quite a bit while she lifted her spoon, and I asked her if that had been happening all day. Not five minutes after that her entire body was twitching/shaking, so Mom and I scooped up her tray and wheeled her right back to her floor - needless to say we were a little freaked out. The resident came in and checked her out, the nurse was there. Nobody had a good explanation... after a dose of morphine (they took her off the PCA today so she has scheduled oral doses and a few allowable IV doses) and ativan Christine fell asleep and the shaking stopped. We aren't sure if the shaking stopped b/c of her sleeping, or because of the medication dosages, and nobody seems to have a good explanation as to why it happened in the first place. The whole ordeal left Christine exhausted and in pain because of all the activity in the muscles.

Here is a picture of her sleeping after the shaking episode. You'd never know she was uncomfortable by looking at it, but she sadly was and still is.

Rheumatology did come by today, and they suggested prescription strength Aleve for the joint swelling. They didn't seem to think that Christine's symptoms are another condition that has happened as a result of the SJS. They explained to Mom and Christine that even though the SJS trigger is now long sense out of her system, her body still thinks it needs to be fighting. They feel that the fluid in the legs and joints is similar to the fluid that was in the skin when it blistered and separated, and is just another manifestation of her body's autoimmune response that will improve with time. I do hope they are right, because its scary and difficult to watch a new symptom crop up each day. Christine deserves a break from all of this pain! Derm came by really late tonight and discussed the negative side effects of long term steroid use (e.g., Cushings disease) and it freaked Christine out a bit so I think there will be a discussion tomorrow about whether the taper rate can be sped up at all. It's a difficult balancing act for sure...

Christine will be spending the day tomorrow with one of her best friends Janie, so she is very much looking forward to that! Just keep swimming. I know how frustrated you are and how tired you are of being in pain Christine, but hang in there. We all love you.