Y'all Come Back Now, Ya Hear?

We just got home from Mayo. They repeated two tests yesterday that measure nerve function. Both tests showed stable results with marginal improvement in a couple of the numbers. As it turns out, I didn't get the clear results I was praying for, but that's okay. God did answer prayers for decent weather, safe travels, and I did not have too much pain. (I am worn out though!)

The doctor said we had many options including:

1. Stop the IVIg infusions, 
2. Take IVIg plus a 2nd medicine, 
3. Continue on as is, or 
4. Switch to something else entirely different. 

Hmmmm....well hey, at least I have choices! Basically, we feel like we are playing pin the tail on the donkey blindfolded! With any disease, it is often difficult to find the correct course of treatment for a patient. It is even more difficult with rare diseases. Many times you just have to make an educated guess, and see if something works.

We discussed all the options, but he doesn't have answers to all the questions I asked. He doesn't know for sure the medicine is doing anything. It might be that I just haven't gotten any worse in the past 6 months. He is "guardedly optimistic" that the medicine may be starting to make a difference. The first signs of this disease began back in 2005. It has been a very slowly progressing disease over 14 years. If the nerve inflammation and scarring is ever going to get any better, it will be a slow recovery process.

We decided to stay on the current course, but with IVIg infusions every 2 weeks, instead of weekly (mostly to give me a little break from the headaches and fatigue). Chad and I are good at making a decision and then sticking to it, so I will do 13 more infusions over the next 26 weeks.

In September, we will repeat all the tests again, and make a new plan.  If things continue to improve, we will adjust treatment as needed. It I am not better, we will stop all medications, wait a year....then, you guessed it, go back to Mayo for testing and a doctor appointment.

I did ask for prayer for clear results. I did get an answer to that prayer, and that answer was very clear, although the results weren't. I like things neat and tidy. I would love to just have all my symptoms packed into a nice little box, and be clearly labeled, but that does not seem to be God's plan. I like to get things done (fast preferably), check them off my list, and move on to the next thing. God, however, has me on the long, winding road, teaching me to sit back, slow down, and enjoy the scenery. I am learning not to take anything for granted. I am also learning to be present in the day. Today I can still get up, enjoy life, spend time doing things I love. I don't know what life will be like 6 or even 12 months from now (or if I will even be around to tell you), but I fully trust God, who is guiding my path. I wish He had me on the expressway, but the back country dirt roads aren't so bad either!

Thank you all for your prayers! I will keep everyone updated on our trips, and test, and everything else! To be continued.....

Until Next Time~
Shari