Wednesday, August 15, 2007

God's little post-it notes

So last night I'm crying again, this time about how this coming weekend was supposed to be our wedding and how I don't look like "me" anymore - or at least not yet. I pointed out how every girl has at least one feature she can feel really good about, her hair, her skin or her legs etc., but that right now I don't feel good about anything about myself. I was especially sad about my hair because as cute as my new short haircut is (Thanks Laura!), I had been growing it out for the wedding, so we could adorn it with a huge orchid. I know, what a bummer, huh?

But then today I was checking my emails and decided to look at today's daily "Word with Joel Osteen" and the scripture quoted was this: “And even the very hairs of your head are numbered” (Matthew 10:30) With a little smile I thanked God for the reminder that I am not going through this alone and that there is someone who knows, full well, what I am going through. This is an especially welcome and comforting thought after getting passed from one doctor to another who will not/cannot treat me. I'll tell you, it can make you feel really isolated and a bit hopeless when no one seems to have any answers.

The rest of the email from Joel was also really on point for how I've been feeling this week -

"We hear all the time that nothing is too big for God. But have you ever thought that a problem was too small for God? Are
there things in your life that you haven’t prayed about simply because you thought it didn’t matter to God? Every detail
of your life is important to God. He knows the very number of hairs you have on your head! That’s pretty amazing to
think about. If He keeps track of every hair that falls from your head, surely He cares about the things that you care about
in your life. "

-because although the worst of it is over, there are still many little hurdles to overcome. For example, I didn't get my period the whole time I was in the hospital. And since the tissue damage was inside and out, there was the possibility that my ovaries could be damaged, just as any of my other organs could have been. It was a huge relief when I did finally get my period again last week because that is a good sign that Jon and I will be able to have our own little babies someday!

Ok- I gotta go to bed now. I have an appointment with a dermatologist tomorrow who supposedly has some "experience" with TENS. My only hope is that he may be able to help me and some problem areas on my skin. I also hope he my know of a regular doctor who has also dealt with it. I'll let you know how it goes!

Monday, August 13, 2007

This is a copy of what I posted on the other blog:

So here's a little update from yours truly:

The first week out was hard because I had to say goodbye to my Mom, who had been here nearly the whole time. I was sad to see her go, mainly because I hardly even got to enjoy her visit since I was drugged and out of it most of the time, but also because it was nice to have such crisply ironed laundry :)

The second week out I hit a wall. Because I had only been "awake" for a couple weeks, there was a kind of novelty with my condition [Note: I'm not making light of what I had just been through but don't forget that I wasn't "there" for the really bad parts, so all of this was new to me]. But in the meantime, the newness wore off and the harsh reality of the lasting effects of TENS was setting in. My skin is always dry and often feels like it's stretching and crackling, my eyes can't see well because I am suffering from severe dryness because my tear ducts are not working, I am easily fatigued, I don't sleep well, my finger nails begin their slow, still ongoing process of coming off as the new nail pushes them off from underneath. ...And a whole bevy of other individually minor-ish afflictions, which when added up are a pain in the ass. (oh yeah, and hemroids, too!)

Week three is now just more visits to all kinds of doctors who say they can't help me and refer me to someone else (read: they don't want to be the person who puts me back in the hospital and potentially kills me because no one really knows how to treat someone who survived TENS.)

At the one month mark I've laughed at my medication-induced hallucinations, visited with friends and thanked God many times over for being alive. I've also cried about once a day out of frustration because I still look pretty weird and this stage of healing is a slow-going process. My eyebrows are back, but you have to look closely to see the few eyelashes. I use a scarf to cover the bald spot on the top of my head - leaving strangers to be confused about whether I am a cancer patient or a burn victim. And either way, the staring and even sometimes looks of disgust can be hard to handle.

Week five: The skin on my face, chest and arms is still pretty red/purple colored and I have to wear clothes that cover me up in this intense heat because I cannot get sun on my super delicate skin for at least a year. And I am tired of sitting in doctors waiting rooms.

So now I bet this sounds like things are pretty sucky and in some ways they are. But there are also little blessings everyday like when I get a card in the mail or see an old friend or get to take a sweet little nap with Lily the cat. And Jon and I are closer than ever before, which is pretty awesome :) For the most part my days are fairly uneventful: I sleep in late, eat some yogurt, take some vitamins, turn on the tv, go to an appointment, make more appointments, catch up with people, eat lunch/dinner delivered by Zifty, watch more tv and go to bed late. So no, I can't really complain except that I miss having my independence to come and go as I please.

I'm not sure if any of this makes sense and it certainly is not meant to be a pity party - it's just that so many people have been asking for an update and I see no need to sugar-coat what my life has been like lately. What I do know for sure is that I wouldn't be making it through this time as well as I am if it weren't for all the support I've gotten from my friends, family and even stragers praying for me all around the world.