Wednesday, March 30, 2011

i suck at this blogging regularly thing...

Ok, first and foremost, I want to say that I SUCK at this blogging thing. The last few weeks have been INSANE for me personally. So yeah, there's my excuse.

I've decided that there's no point in keeping things secret on here. It's my blog, I'm going to write what I want. My pleasures, my pains, my happiness, my depression. I'm just going to lay it all out there. It will hopefully be therapeutic for me since I can't afford to go see a therapist. (yeah...I'll get to that.)

I'll start things out cheerfully. Here's Penelope, who's going to be 6 months old soon:
Ah, I just love her little face. Well, I'll be honest, I love her little everything.


So, life has changed dramatically in the last couple of weeks. We moved, again. Back to our hometown, so we can try to save some money and try not to drown in all our bills.

We've both got new jobs, what sucks is that they're part-time, but right now we can't afford childcare so it's all we can do currently.

As far as my health issues go, I've had more testing done. I had an EMG. Which for some reason I thought was a brain scan of some kind, boy was I wrong. They hooked little electrodes to me and used a taser to shock me and see how my nerves reacted. I think I was probably shocked about 90 times or so. Some were no big deal, some frickin' hurt. THEN, my Neurologist said she had to stick needles in different muscles and have me flex them to see how they react to stimulus. It was terrible. She poked me in each limb about 10-15 times.

The good thing about this test is that we're 95% sure about the diagnosis. One more test to go. A spinal tap. I have that tomorrow morning. Once we get the results back on that, hopefully we'll have a 100% diagnosis. Currently, my doc thinks that it's a rare disorder called Multifocal Motor Neuropathy with Conduction Block. Only 1 in 100,000 people get this disorder. But thankfully, there is a treatment for it, but it's an IV infusion that I have to do 5 days in a row at the hospital, and each infusion takes about 4-6 hours. So, yeah, I'm about to start this new job and I have to tell them I can't work for a week because this treatment apparently wears you out and can make you feel pretty sick.

If this is in fact what it is, then I'll have it for the rest of my life. I'll have to get these IV infusions regularly to keep my symptoms from getting worse. But on the upside, it's supposed to help the numbness/weakness. I hope it works.

I'm honestly just glad we have an answer. I'll do anything to make myself feel better. Even if I have to endure these stupid and painful tests first. God I hope it works.

Thankfully it's not hereditary or genetic, it's origin is unknown. But at least I don't have to worry about Penny or any future kids having it. And that's also a good thing, I can still have more kids. :-)

So yeah, tomorrow's the spinal tap. I hope it doesn't suck as much as I'm anticipating it to.

Here are some fun pics from this month:








1 comment:

  1. So I know you got the spinal tap--- did the results come back yet? So glad you have some definitive answers now...and have an idea of what the treatment will be...and you WILL be OK in the long run....we just do what we need to do to live life, ya know?

    Can't believe our babies are 6 months old. Sooo many HUGE milestones are about to come....

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