We have had a wonderful month with family here for Thanksgiving and a wonderful Christmas Eve and Day with 2 children and their families who are in town.
I have slowly been tapered off the prednisone to 5 mg. I have been sleeping so much better at night. Although, a couple of weeks ago, a rash appeared on the trunk of my body. The doctors all agree that it is a graph vs. host disease and happens with tapers. The rash has been interesting. It is ugly red and itches a little. It also seems to run its coarse, lighten up, and then will appear on some part of my body. Luckily, it has not gotten to the point up going back on higher doses of prednisone. I have a steroid creme that seems to work. I don't know why, but I have not felt as well the past couple of weeks as I've been going through this. And it has also delayed the taper of the other drugs that I am on. Oh well-it's all part of going through this and there is not a definitive answer for what the near future holds. I was told at clinic on Monday that people that get graph vs. host seem to do better in the long run. I'll take it! The trick is keeping it under control! Who knows what other surprises I will get.
I was fortunate to do most of the shopping for Christmas online. I went out a couple of times in early November before there were any crowds. I also made picnic 'blankets'( three beach towels sewn together) for every family. I did this when I was on the high doses of prednisone, and I had more energy than I have today. I had help with wrapping and with shipping and towards the end with last minute shopping.
We have loved the Christmas cards we have received and all the gifts from neighbors and friends. My ward Relief Society put together a quilt. Everyone took their own square and did their own creative thing. A very talented woman then pieced it all together and quilted the edges and in between the squares. It is such a treasure and I look at it every day! I'm still so overwhelmed with how people care and show their expression of it. I haven't gotten discouraged, although I was sorry to miss every Christmas party we were invited to. This is a time to heal and continue to be careful and cautious around crowds and gatherings.
We look forward to a new year, and healing and getting back to some normalcy-but not putting a time table on anything.
Love you all and wish all of you a great year!
Kathy
