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!
Wednesday, August 15, 2007
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.
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.
Monday, July 23, 2007
Buggin'
OKay, okay - you guys have been bugging me to start blogging again, so here goes! As many of you know, I was resently discharged from the hospital after a long (35 days!), difficult and nearly fatal stay at Grady Hospital's Burn Unit as a result of being struck by Toxic Epidermis Necrolysis (TENs). I entered the hospital on June 2, 2007 and left July 6. It was an ordeal to say the least - although the medication they used on me (Versed [ver-said]) put me in a coma and later gave me amnesia, so I really don't remember much of it.
You can read a day-by-day account of it as written by my wonderful friend, Reena, at http://heyjeeves.blogspot.com - but I must warn you that some of it is medically graphic. I haven't even read most of it (except your sweet comments!) because it upsets me.
Anyway, I've been home for a little over 2 weeks now and things are coming along pretty well. The doctors are all impressed with the speed with which I'm recovering but I'll be honest and say that I definitely have my moments when I am really frustrated. Nobody likes having really tender and dry skin and mine is a lot of both.
But let's talk about happier things like our wedding! We have postponed it from Aug. 18th to January 19th, 2008 - with all of wedding day plans remaining the same. So now it'll be a "winter" wedding (it is Georgia after all, so I doubt we'll have very wintery weather!). But I might just get to wear one of those faux fur wraps - oh-la-la!
Monday, March 05, 2007
Totally Bummed to the Max
Now that my birthday party is over and all of our guests have left and J has left for work, I feel especially lonely. But that's only because the weekend so so wonderfully full of friends, family and surprises!
My actual birthday was on Sunday the 4th, but of course Saturday is party night. Eventhough I knew what the theme was for the party (1980's a la "Miami Vice"), I was still really surprised when I walked in and saw all the balloons, posters (there was a multi-colored sign in the bathroom that read: "For a good time, call: 867-5309") and people all dressed up! You know people really love you when they dress up like fools for you.
Overall I think about 50 people showed up - girls with big hair, guys with tight-rolled jeans and kids spraying each other with silly string (evidence of which will probably be found in odd places around the house 10 years from now). People were dancing (ok, maybe just me) to the 80's tunes and happy birthday was wished to me in high-pitched, helium-induced voices - everyone agreed it was a really fun time. I know my friends helped out a lot, but I really have to give a lot of credit to J for putting this whole thing together and then, while I was visiting with my sister the next day, he cleaned up! Who could ask for a better guy?!? Not to mention he made for one hot "Don Johnson"!
Friday, February 23, 2007
Family and other indisposable things
Our wedding is inching closer and closer, faster and faster. I have officically busted the budget and it seems that everyone's deposit is due right now, $500 here, $1,000 there - it's adding up and freaking me out. And I really am trying my best to find the best deals while not compromising too much on quality. At this point I'm only nervous about the baker - I'm sure it'll be lovely cake, but I'm worried it'll taste like wedding cake and I've never really liked wedding cake. There is a difference between cake and wedding cake. I don't know what happens to make them different, I just know that eventhough I like to eat cake, I rarely like the cake served at weddings. There's something dry and too-sweet and yet nearly flavorless about wedding cakes. At least to me.
But this is one of the two bakers everyone suggested to use and the other one won't make the groom's cake the way I want, so that's that. There is only so much time you can spend on each part of the wedding or else you'll drive yourself crazy. And because I do want our wedding to feel like a wedding, you pretty much have to have a cake and flowers and all the other stuff that makes a wedding a wedding.
Which brings me to family. As the wedding nears, the distance between me and my family becomes increasingly painful. I am lucky in that I am not referring to emotional distance, just old fashioned miles of space. My mom, stepdad, little brother and one of my sisters and her family all live way far north and I live in the South.
The distance slashes across my heart because I know that it won't be long after we get married that we're going to try to start having a baby and I won't have my mother around for comfort and help. Yes, J's family in here, but we're not really close. We're all friendly with each otherand it's nothing against his sisters, but honestly I'd just prefer to have my own mother and sister with me. I guess it's just a comfort/familiarity/blood thing.
I've turned this over and over in my head and there's just no reasonable solution to it. They like living up there and actively dislike how land-locked we are. We like living down here and actively disike the cold, grey weather they have up there. Not to mention that everyone has their jobs and homes and what-not that makes it practically impossible to move. The prospect of having children who don't really know their Grandparents and other family members makes me so very sad, it almost makes me not want to have any - the emotion is just that strong.
Not to mention everything I've missed in my little brother's life. He's 15 now and I get to see him twice a year at best. Same goes for my sister and her kids. My niece Sam hardly even knows I exist. That kills me. When I moved down here after college I never really thought about how drastic the distance would prove to be. We had always moved around so much, I think there was a part of me that believed we'd all end up living near to each other somehow.
How fitting: Marc Broussad's song "Home" just came on.
I think one thing that makes this so tragic for me is that I always liked/loved/appreciated how close our family was considering and despite the divorce, step-parents, half-siblings and many, many moves that happened, for better or worse. I think this led me to believe that my family would do the same - not let outside things affect our sense of family and always come back together in the end.
Maybe that was just my perception, a romanticised memory. In reality my older half-siblings were parted with our common father at ages 3 and 4 by marrying my mother and moving away and then my immediate sister and I were parted with him after he left and our mom's marriage moved us away from him when we were 10 and 11 years old. All of us, our dad's children, spent the rest of our lives as occasional guests at his house, but all of the kids, though legally only half-siblings, all refer to each other fondly and willingly as just sisters and brother - even my younger half-brother, who has absolutely no blood relation to my older half-sister and half-brother, is regarded as family.
That said, this kind of openness in titles and affiliation has also led to some strain - my stepdad calls me his daughter, something that I like - but he would like and has asked that I call him "dad" - something I just can't do. It's not anything against him - he's known me since I was 10, he went through my teen years much more acutely than my own dad who saw me only 5 times, two weeks at a time, while I aged from 12 to 17. But I just can't bring myself to call him "dad." I've tried to explain this to him - that if my own father had really cut out and left completely or died, then I could and would be happy to transfer the title. But my dad didn't and he's not, so I can't.
Anyway, the point is I am sad, upset, pissed, torn...etc. about not having my family closer to home - so that it can really feel like home.
But this is one of the two bakers everyone suggested to use and the other one won't make the groom's cake the way I want, so that's that. There is only so much time you can spend on each part of the wedding or else you'll drive yourself crazy. And because I do want our wedding to feel like a wedding, you pretty much have to have a cake and flowers and all the other stuff that makes a wedding a wedding.
Which brings me to family. As the wedding nears, the distance between me and my family becomes increasingly painful. I am lucky in that I am not referring to emotional distance, just old fashioned miles of space. My mom, stepdad, little brother and one of my sisters and her family all live way far north and I live in the South.
The distance slashes across my heart because I know that it won't be long after we get married that we're going to try to start having a baby and I won't have my mother around for comfort and help. Yes, J's family in here, but we're not really close. We're all friendly with each otherand it's nothing against his sisters, but honestly I'd just prefer to have my own mother and sister with me. I guess it's just a comfort/familiarity/blood thing.
I've turned this over and over in my head and there's just no reasonable solution to it. They like living up there and actively dislike how land-locked we are. We like living down here and actively disike the cold, grey weather they have up there. Not to mention that everyone has their jobs and homes and what-not that makes it practically impossible to move. The prospect of having children who don't really know their Grandparents and other family members makes me so very sad, it almost makes me not want to have any - the emotion is just that strong.
Not to mention everything I've missed in my little brother's life. He's 15 now and I get to see him twice a year at best. Same goes for my sister and her kids. My niece Sam hardly even knows I exist. That kills me. When I moved down here after college I never really thought about how drastic the distance would prove to be. We had always moved around so much, I think there was a part of me that believed we'd all end up living near to each other somehow.
How fitting: Marc Broussad's song "Home" just came on.
I think one thing that makes this so tragic for me is that I always liked/loved/appreciated how close our family was considering and despite the divorce, step-parents, half-siblings and many, many moves that happened, for better or worse. I think this led me to believe that my family would do the same - not let outside things affect our sense of family and always come back together in the end.
Maybe that was just my perception, a romanticised memory. In reality my older half-siblings were parted with our common father at ages 3 and 4 by marrying my mother and moving away and then my immediate sister and I were parted with him after he left and our mom's marriage moved us away from him when we were 10 and 11 years old. All of us, our dad's children, spent the rest of our lives as occasional guests at his house, but all of the kids, though legally only half-siblings, all refer to each other fondly and willingly as just sisters and brother - even my younger half-brother, who has absolutely no blood relation to my older half-sister and half-brother, is regarded as family.
That said, this kind of openness in titles and affiliation has also led to some strain - my stepdad calls me his daughter, something that I like - but he would like and has asked that I call him "dad" - something I just can't do. It's not anything against him - he's known me since I was 10, he went through my teen years much more acutely than my own dad who saw me only 5 times, two weeks at a time, while I aged from 12 to 17. But I just can't bring myself to call him "dad." I've tried to explain this to him - that if my own father had really cut out and left completely or died, then I could and would be happy to transfer the title. But my dad didn't and he's not, so I can't.
Anyway, the point is I am sad, upset, pissed, torn...etc. about not having my family closer to home - so that it can really feel like home.
Tuesday, February 06, 2007
Now this is what they call...
Truth in advertising: 
This photo was taken by my dad when we were on a hike up Pilot Mountain in N.C. and came across a pack of cig's on the trail. Dad thought it would be funny but no one helped us pose at all - we were influenced, I believe, by all of the billboard ads that showed pictures like this Misty ad. Creepy, huh?
This photo was taken by my dad when we were on a hike up Pilot Mountain in N.C. and came across a pack of cig's on the trail. Dad thought it would be funny but no one helped us pose at all - we were influenced, I believe, by all of the billboard ads that showed pictures like this Misty ad. Creepy, huh?
Hilfe!
Ich suche fuer meine Freundinen aus Stuttgart, Isolde u. Dorothee Wuensch (vielleicht Dorothee Paulus). Ihre spitznamen sind Iso und Dodo. Kennst Du Sie? Bitte melde Dich!! Ich vermisse Euch so sehr!!!
{This post says "I am searching for my friends from Stuttgart, Isolde and Dorothee. Their nicknames are Iso and Dodo. Do you know them? Please get in touch with me! I miss them so much!" I wrote this because I lost touch with them and thought, hey, people google their own names all the time, maybe this post will come up in the search - and it worked! Dodo emailed me about a month later and then Iso came to visit. This internet thing is pretty darn swell, doncha think?}
{This post says "I am searching for my friends from Stuttgart, Isolde and Dorothee. Their nicknames are Iso and Dodo. Do you know them? Please get in touch with me! I miss them so much!" I wrote this because I lost touch with them and thought, hey, people google their own names all the time, maybe this post will come up in the search - and it worked! Dodo emailed me about a month later and then Iso came to visit. This internet thing is pretty darn swell, doncha think?}
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