Thursday, February 3, 2011


It was Groundhog day, and the appointment that seemed so far off was here. Yesterday.

It turns out that despite my silly worrying, the neurologist was pleased with my progress. We are slowly altering my medicine regimen and are looking at a time frame of about 2-3 months to stabilize before going on to alternate routes and ideas.

I REALLY like my neurologist. He has a calm and pleasant demeanor and seems to have harnessed wisdom and intellect stored on neat little shelves in his mind. I guess this is how many doctors have to learn to function. God has gifted them with high intelligence and somehow throughout training and experience, the doctor has to harness and communicate well to the patient what would serve him or her best, within that season. It paints a clear picture of patience for me. Imagine all that studying and interest into a rare disease (which I have). Then MAYBE once in 10 years someone comes along that presents as if they have the disease. Would you be able to tap back into that little "rare disease shelf" in your brain? I certainly wouldn't. Thank God for my neurologist who has a special interest in MG. As far as doctors go, I can now, even more, understand why they get a "gleam in their eye" about these rare and interesting diseases. Amidst all the bs and paperwork, something they actually studied for and have interest in presents in a patient, and they can serve in a somewhat fulfilling way. Talk about patience!

Among other things, Mike and I mentioned the bizarre events that led to a little searching about the rare disease from Tuesday's post. Not only is my doctor amazing at knowing the ins and outs of MG, but he happens to be an "international expert" in the disease we mentioned. He said, that disease is actually common. Myasthenia is rare. Oh.

So, here we go. We have a heading and an altitude for the next few months. I'm sticking with the part-time nanny and relying steadily on the Grace that God has revealed to us throughout this trial and throughout time - with His help of course. :)

One of my favorite go-to phrases (Jo, don't be afraid of sudden disaster) was in our proverb today:

Have no fear of sudden disaster
or of the ruin that overtakes the wicked,
for the LORD will be your confidence
and will keep your foot from being snared. Prov 3: 25-26