His Power in our weakness

I went to see Dr. Brown, my wonderful neurologist on Friday, the 13th of October and had a few things about my disease clarified. First, supposedly I'm in between childhood and adulthood versions of dermatomyositis. Usually the type that occurs with 13 year old boys is very responsive to Prednisone (I was not, and was all the way up to 80mg/day before we discovered this) and there is not often a need to use IVIg for treatment (It seems to really be the main thing helping me though). It also is generally "cured"-- meaning that once the affects are reversed, the disease doesn't usually return later in life.

In the adult version of the disease, typically it doesn't affect someone until they're in their 50s. This form can be treated and goes away for a time (remission). But stress and other factors can cause it to return, and there is need for further medication and monitoring.
Since I fall in the middle of these two versions of an already very specific disease (only affecting about 20,000 people in the US), there is virtually no precedent and no way to know how the process will work. For now, I continue on the IVIg and am working toward getting my physical strength/stamina back.

I never realized how exhausting this process of rebuilding muscle would be. It seems that I am always tired. So I've decided that quality is better than quantity. In light of that, I am walking without my walker to classes and church now as well as maintaining two days a week of physical therapy. I've been getting my own meals these days and even helping Rebecca around the house with dishes and laundry. Rebecca and I are even doing a weekly date night where we do something fun and take a break from all our responsibilities to rest.

Second, now I'm down to 30mg/day of Prednisone and in another month will be only on 20mg/day. This is very exciting, as the acne, bloated feeling from water retention, and general muscular weakness from long-term dosage that are side-affects of the steroids will be reduced!

Third, I won't really know how much muscle I'll get back for another year. This was kind of discouraging to me because I never imagined this would be so slow of a recovery! If everything goes the worst, Dr. Brown says that I'll be off of all medicine in five years (though I have no way of knowing whether the disease will return again later in life and require more treatment). More than likely I'll be off of all medicine in two years. Right now the plan is to take it one step at a time and trust the Lord while continuing to do good.

Forth, I'm discovering that admitting weakness is one of the most difficult things in the world for me to do. These last ten months of battling against my own body have given me many occasions to have to learn how to ask for help. But I have never once liked being forced to do this. It goes against every fiber of my prideful being. It also is not something that a pastor's son should ever have to do, right (or a future leader or a husband and someday a father)? No, it has been the most difficult thing I've ever had to do this last week to go before the session (elders/leaders) of our church and confess my sins and ask for prayer. I realized that the power of prayer and community was necessary to break free of my bondage to sin as well as to fight the spiritual warfare, depression, and trials that Rebecca and I have been flooded with these last ten months of our lives and marriage. Praise Him for second chances, growth, love, forgiveness, and that there's one thing I can bank my life on: someday I'll be in glory with my Lord Jesus!

Today I realized that the most exciting thing about the gospel to me is that a guilty sinner like me is free from the bondage of having to be perfect. I’m broken, I’m a mess, but I’m going to glory! Praise Him for such grace.