Heading for the third round

I guess thinking that I was on a two-month treatment cycle was just me being the eternal optimist. Maybe that is why I get these waves of melancholy and angst? It happens when I actually schedule my next treatment course. Or when I suddenly start to feel pain doing an everyday activity, like pulling off a t-shirt. Perhaps these events trigger a challenge to my natural state of optimism about everything, and that in turn causes me to think about some of the negative aspects of my life with MMN. Or perhaps I am just still learning to accept my condition, and what I really need is to adjust my expectations.

So later this week it will be another two days of juice, after a break of 5 weeks since the last treatment. This is more typical of the treatment cycle for most people with this disorder. The hospital has a new guy in charge of the unit, and I'm told he's really good with putting in IVs. We are making some adjustments to the regimen - a different premedication that should hopefully reduce or eliminate the side effects, and slowing the infusion rate so each batch goes for five hours instead of three. Will have to stock up on DVDs, but the real challenge for me will be to actually get up with the IV in my arm, walk over to the bathroom and relieve myself at some point during the infusion. I managed to do that last time without even looking at the IV site - quite an achievement!

In the meantime, my "rig" (a al Mythbusters) is all set up. It consists of a plastic basket, some ribbon, and a series of weights (the weights were originally little bags of dirt, but I've gone all out and purchased some a calibration weight set). This allows me to regularly measure the strength in my hand (actually, each finger) and record it. Creating a spreadsheet and a pretty graph of the strength measures over time, and how they are impacted by the IVIg treatment is actually something I really enjoy, being a very analytical person.

This will be my third treatment, but there is not much point keeping count. Shortly, it will just become a contiuum, like monthly board meetings or business trips. Discussed the situation with my father today, and explained to him yet again that there is no known cure and that the treatment is ongoing. What I really need right now is a good cry. The emotions are welling up just beneath the surface, and I need to share them with someone who can understand.