But my mommy said I am special!

I was dreading the Labor Day weekend and questioning if throwing a big enough tantrum would prevent it from arriving. I knew that I had to start my immune suppressing drugs on Saturday. There are many people who take these drugs and adapt to the side effects successfully. However, we are adding immune suppression on top of high levels of steroids...which are immune suppressants! After fighting years of ulcers and gastric disease, taking drugs that are known for causing severe abdominal pain seemed daunting.

I took my first dose of medicine Saturday morning. My daughter woke up that morning with a swollen throat, fever, and body aches. By that afternoon, my son had a sinus headache and was vomiting. Shortly after getting both kids in bed that night, my daughter returned to the living room with a bloody nose. Awesome!

Sunday morning arrived and my children were feeling a little better. John was going to be gone, so my wonderful in-laws agreed to watch the kids that evening for me. I spent the evening with a friend and found myself overwhelmed. I realized that while my life had been shaken. Each minute seemed to drag while we wait to see if these drugs are going to work, make me sick, put me at risk...dominate my life. I know this must sound selfish, but my feelings were hurt that the world kept turning. I felt like the little girl watching her friends on the roller coaster because she was told she couldn't ride.

I spent several hours on Monday reviewing medical journals and articles that my cousin Laura was able to pull for me. I stumbled across some very interesting things. There have been very few patients that have displayed the number of symptoms I have, and few have had them at the level or extent that I have experienced. It was refreshing to learn that there have been a few patients that have been on the immune suppressant that I am on now. Unfortunately, I haven't found any cases where they were able to come off of the steroids completely. Each of those patients also seemed to be classified as having a progressive case. This means that their disease continued to progress rather than occasionally relapsing or permanent remission.

That initially left me depressed and negative, but then I remembered a word...Faith. Who says I will not be the first to come off of the steroids? Who says my disease has to progress? Why are we praying if the future is set in stone. God gave the Israelites manna as daily bread...meeting their needs one day at a time. He didn't promise that it would be easy or without trial. So I am trying to keep the faith.

I will be up to full level of medicine by Friday. My stomach has been a little upset and I run a low fever in the evenings when I am tired, but have been feeling better than I expected. I am exercising a little to fight the bone loss and will begin the calcium next week.