Thursday, January 12, 2012

Just Like Alice

There's a line in Lewis Carroll's Alice in Wonderland (or perhaps it's from Through The Looking Glass) where someone says something like, "It takes all the running I can do just to stay in the same place."

I feel a bit like that.

If you've been here before, you probably know that I have Crohn's Disease, a gastrointestinal disorder which so far has no cure.  One of the many problems caused by Crohn's is an inability to absorb sufficient amounts of certain essential nutrients.  Last August it was determined that my iron saturation levels had fallen to 18%.  Without enough iron, you don't oxygenate your blood properly and all kinds of problems can occur, everything from brittle fingernails all the way up to, well, death, with lots of stuff on the scale between those two extremes.

My doctors started me on a monthly infusion of intravenous iron.  Every month I would go in, sit in a chair, and have what looked for all the world like rusty water run into my veins.  There are some risks with intravenous iron.  Too much can overwhelm your liver.  There can be fatal allergic reactions.  Luckily I suffered neither of those, but I found the iron infusions to be extremely painful.  They caused an intense burning feeling all through my body.  I was told that this can be normal for some people but I found it to be torture.

The idea was to get my levels back up to an acceptable level -- normal saturation is around 33%, give or take -- and then go back on an oral iron supplement.

After several months of treatments, I went in last week for some blood work to see how the iron was working and to make sure my liver function was still OK.

My iron saturation level has fallen to 9%.  Half of what it was before I started the treatment.

At least now I know why my fingernails are useless, why my joints hurt, why I'm so irritable, why I'm always tired, and believe it or not, why I suddenly crave chewing on ice cubes.  I'm going to go back on oral iron AND continue the iron infusions for another three treatments, every three weeks.  It's not clear to anyone why my iron levels keep falling.  Usually this is associated with bleeding internally somewhere, but if I am, we can't find it.  And I am not going to risk exploratory surgery, thank you very much.

I wish I had it in me to hope that the new combination of oral and intravenous will change things around.  I ran out of hope when it comes to Crohn's quite some time ago.  I have had cures and treatments dangled in front of me for over 45 years, and there just isn't any left.  My therapist tells me that this is why I have such bad depression, because much depression stems from a feeling of hopelessness.  But when every treatment has led nowhere at best, and into terrible side effects at worst (hello, peripheral neuropathy; I'm talking to you!) all my hope has been sucked dry.

And people wonder why I escape into comic books as often as I can.

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