Onward and upward...

Well, I believe my IVIG treatments may be working a bit. I was skeptical at first, because when my disease fist started, it was intermittent.

So, when I realized I could move my big toe, I waited to see if was only a fleeting moment...

It turns out, it kind of was. By the end of the week, I could move all 5 toes on my right foot, and if I concentrate really hard, I can get my right ankle to "roll"

The weird part; I will look down at my toes, attempt to make them move, and they do...BUT...they don't do what it is that I am telling them. A bit creepy, but when we spoke to the Neuro, he explained that all of my nerve fiber sheaths are MISSING. So, as they grow back, things start to fire, but sometimes in the wrong sequence. And, even though I can move them, I can't FEEL them move. So I have to make a conscious effort to wiggle them, and watch.

The hard part; As my nerves have started firing, I have endured some pretty bad pain. Pain I have never had before, and is VERY hard to describe. I have been told this is "nerve pain". I can't reach it, touch it or stretch to make it go away. There is no icepack, no heat pad, nothing that relieves this pain.

What is odd about the pain is; I welcome it. With open arms.

18 months ago, I started losing sensations. Slowly but surely, this disease ate away at my feeling, my hot and cold tolerance, and then progressed to my muscle tissue, and I lost my reflexes on my right side. I still can't feel the right side of my face...but, I was never in PAIN. I would drop things, forget things, and I broke quite a few toes, but NO PAIN. Odd, isn't it?

So now, as I write this, my right arm literally feels like someone has covered it in ICY HOT, and then set it ablaze. That's the closest description I can come up with.

My toes, I still can't feel, but my right leg has what I have heard called "CORE" pain. Hence the "I can't reach it"...

Core pain is a conundrum to me. I want so bad to rub my leg and make it feel better, but try to imagine not being able to tell that your hand is on your own leg.

So, there are medications out there for nerve pain...BUT; I can't take any of them.

Being 7 months pregnant certainly has it's draw backs.

So, like I said, I welcome he pain. Any sensation is better than nothing to me, but it's tough.

I think it's going to be an uphill battle from here, but at least I'm back in the fight.

Before this week, I felt like I couldn't even battle my own disease, for I had no hope that it was going to get better until after the baby was born...Now, I can start fighting.

I will beat this. I understand that, for the rest of my life I will have this disease, I will live in it's lurking shadows, waiting for it to pounce again...

But right now I'd like to beat it into submission, now that I have learned what I need to do with my life.

I want to be able to pick up my own daughters without being watched like a hawk, just in case I drop them.

I will beat this. I understand that I may not get everything I lost back. I appreciate now what I had, and am fine if I can't have it all.

Just the ability to "stand on my own two feet" would be nice...

3 months and counting until the new baby girl arrives.(if not sooner!)

I have given myself a pep talk, and I will be ready. I will give my poor husband a break. He needs me back. I need me back. And my girls need me.