Friday, January 9, 2009

The "why" of this blog and some background...

So, fair warning...I imagine that this is going to get somewhat personal. The primary reason for this blog is to help other people understand some of what we have gone through during the early, middle and now later stages of this horrible disease that H has been diagnosed with. It is an outlet for me as well, and to that end will reflect my opinions about various potential causes, treatments, procedures, alternatives and probably a few people.

Bearing that in mind, and knowing the power of the internet, I hope this blog will save some people some pain, time, headaches, heartaches and of course, money. Why do I think it will do this? Because eventually, I think people will find it because they will "Google" something in it that they might be looking into and discover our experience. If this is the case, and that's how you got here, my emphasis to you is that these musings are really only the accounts of our personal experience with these things. Maybe they worked for someone else, maybe they worked for people with other conditions, etc. I almost named this blog "Itdidn'" but am too used to blogger and of course that would assume that nothing ever will. If you have read my other blogs, you know now that so far...nothing has, but we are not done yet.

The story starts in Suburbia in Colorado...Three girls ages 5,7 and 9, soccer, great schools, great neighbors and friends...everything is "fine." Even better than fine. Business is good, everyone is healthy. Sort of the kind of life one can take for granted, though i'm not sure we ever did. Looking back, we argued more, we thought insignificant things were big deals, we probably worried more about "what other people think" etc. Pretty normal stuff for our place in the world, I imagine. The shit we have gone through since then has put a lot of that into perspective.

Back to the beginning...It is the spring of 2006. We think we are done having kids. H is in great shape, working out every day at some ridiculous hour in the morning when I am still comatose, but loving it for some odd reason. She is using the "ring" as a birth control device, having replaced a non-hormonal IUD with it just a month or so before. This ring is pretty new and does not seem to come with the worlds best instruction manual. Well, one day it pops out unexpectedly, probably gets put back in the next morning. Sometime in between the two, let's just say the water polo team, being the strong swimmers they are, got the ball in the goal.

A checkup reveals a shocker...we are not done afterall. This news is initially met with, well...shock. Heidi just had her "all the kids are in school for the day" celebration. No more diapers, no more squirting yellow baby poop, no more sleepless nights and no more "near misses" on the whole potty training thing. I felt like Al Pacino in The Godfather "Just when you think you are out...the puuulllll you back in."

So, the roller coaster ride begins. Shock and disbelief turns to jubilation. Wow, another BABY! Babies are awesome in so many ways. We can do this, it's OK, heck, in a few years, we'll have built in baby sitter freedom out the yinyang. No big deal. Rock and roll this is gonna be great!

That was about the pinnacle of the roller coaster. From there, it was down hill for a long time. All the hormones said "baby" but the ultrasound said "uh uh." Nothing there where it was supposed to be. The fear was ectopic pregnancy. This is where the fertilized egg embeds in the filopian tubes, which as the cells multiply can cause them to burst, which can in-turn cause death by internal bleeding. Not believing this to be the case, we kept looking, testing and hoping. This was a matter of days after the initial positive test. Finally, with some fancy color hi-res ultra sound not discovering anything we were told we needed to "end it" to protect H from the aforementioned dangers. Major sad day. A new kind of pain was felt by us on that day for the first time, but many times since.

She was given some type of chemo drug that immediately stops cell growth, thus ending any pregnancy that might be occuring somewhere that nobody can find. This is a very sad day for us, but her safety is our primary concern and there really is no option at this point. Two days later, she wakes up at 4am doubled over in massive abdominal pain and we call the Dr. No, this is not normal. Yes, go immediately to the ER.

God, do I really want to go into this? What does this have to do with ALS? Maybe more tomorrow. Maybe I'll think better of getting in to this level of detail...Out for now. B.

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