Friday, November 30, 2007

Do you agree?

These are the result from the "Picture Personality" quiz on Facebook and I must say it's pretty and surprisingly dead-on.

Temperament: Idealist
You are the quintessential dreamer - spending more time thinking about the possibilities that the world holds for you, rather than your reality. You don't settle for anything less than what you truly desire and you work very hard. You tend to live in every place except the present - you are prone to daydreaming about the future and re-thinking the choices you made in the past. Sometimes you get overly caught up in your thoughts.

Interests: Simple
You are continually pursuing a simpler and less complicated life - you don't allow yourself to fall victim to all of the "should do's" that society continually bombards you with. You are thoughtful about your life choices and think in terms of yourself, others and the world in which we live. You have a great sense that we are part of something much bigger and we must be good to others, if we want others and the world to be good to us.

Amusement: Thoughtful
You are easily stressed out and overwhelmed - you need to take care of yourself first and foremost. Because you tend to be self reflective, you know your limits quite well and must remember to not exceed those limits. When you overwhelm your life with obligations and responsibilities, you tend to shut down and go into yourself even further. Take some time to find your serenity and kick back your feet.

Passion: Emotional
For you passion is less about romance and sex - it's more about friendship and family. Strong emotional bonds and connections are your passion and your pleasure. You always let your loved ones know how much you love, respect and admire them. You do this through kind words, loving actions and simple gestures. You count your blessings each day and express your love openly. You expect the same from others.

Monday, October 22, 2007

Here's the "short" version of my story:

TENS is a severe adverse reaction to medication (a more severe version of Steven Johnson Syndrome - SJS), which causes the epidermis to blister, die and come off over 30% of the body, internally and externally. In my case it was over 80%.

I live in Decatur, GA where I was misdiagnosed twice by one hospital and then correctly diagnosed at another hospital and then sent for treatment at a third hospital where I stayed for over a month in the trauma burn unit. I wish to be on your program because I appreciated to way you have handled peoples stories in the past and because I am alive because that little voice in my head simply would not stop telling me that something was REALLY wrong.

Here's the long version of the story - please excuse any repeat of information - this is the same version of the story that I have shard with people in my online support group. I apologize for the length.

I am a 30 year old caucasian female and the short version of my story is that I developed TENS over 80% of my body and spent over a month in the trauma burn unit at Grady Memorial Hospital as a result of taking Piroxicam (Feldene).
Here's the long story - I am going to try to be as specific as I can, so that people may contrast and compare thoroughly. I feel that this is the best way for us to better understand the what and why of SJS/TENS. If I seem to state the obvious for some things, please keep in mind that not all cases are the same and some other people may need explanation. Also, please excuse any misspellings.

As of June this year (2007) I was in fairly good health prior to this incident, with the exception of having severe pollen allergies with asthma and mildly bad joints. I am also moderately allergic to many fresh fruits and vegetables and tree nuts. Latex has also caused minor irritation to my skin (i.e. I cannot use traditional condoms). Last, I had a reaction to the antibiotic Augmentin a couple years ago in the form of a rash on my stomach and legs as well as feeling hot - not like a fever but internally hot - a feeling I am sure most of you are familiar with. Looking back and knowing what I know now, it is my personal belief that I experienced Erythema multiforme from the Augmentin. At the time I was treated with a shot of steroids and discontinued the medication and the symptoms went away.

Then, on June 2nd of this year (2007), I noticed that what I thought was a vaginal yeast infection was not improving but getting worse, even though I had used a over-the-counter yeast infection treatment that I had used with success in the past. In addition, my eyes were irritated and had some mucus in them (not from an outside source - I was not using any kind of eyedrops and I did not have contacts or glasses).

I was concerned that instead of a yeast infection I might have a urinary tract or bladder infection, so I decided to go to the hospital emergency room (because it was a Saturday). After waiting many hours I finally was seen by a doctor. By this time my external vaginal area was inflamed and somewhat painful to the touch. My eyes also continued to be affected with mucus. In addition, I could feel that my mouth was beginning to get sores - I could feel my gums swell in places and I had that distinct metallic taste of blood.

It was faint and the doctor claimed she couldn't see anything when I asked her to look in my mouth. I was struck by and mentioned the oddity that all of my mucus membrane areas were reacting at the same time. The doctor brushed it off as mere coincidence, saying that I just had a bad yeast infection and just needed regular eyedrops for my eyes, completely disregarding my mouth. I left the hospital, got my yeast infection prescription filled and went home. I applied the medication as prescribed but over an hour later I still was continuing to feel worse and not better.

I called the hospital and somehow managed to speak to the doctor I had seen. I asked her if I should have at least some relief from the vaginal cream and she said yes. I told her my situation and she advised me to come back to the hospital. It was around 11:00 p.m. at this time, but I went anyway because of my increasingly inflamed and painful state. I was taken to a room fairly quickly, but once I was there I had to wait a long time again.

By now I was unable to sit because of the pain. My eyes were worse and my mouth felt very raw. My fiance noticed small red pimple-like spots on my back. A different doctor saw me and told him about my previous visit. He did pay closer attention to my eyes - he put some sort of florescent dye in them and looked closely with a blacklight flashlight. This was his diagnosis: a really bad yeast infection and a viral infection in my right eye.

The connection of all mucus membrane areas and the red spots were brushed off as nothing and I was told that these are not issues that are important enough to come to the emergency room for and I should not come back. By now it was around 2 a.m. and I went to the pharmacy to get my prescription eye drops. I went home, took the medication and went to bed.

I woke earlier than usual the next day (June 3rd) in a state of anxiety - I KNEW something was not right. Over the course of a couple hours, the red spots spread, my lips began to swell, my skin looked grey and I felt hot. (As with the Augmentin reaction - this heat is different from a regular fever. I felt hot in my body, like my insides were boiling) I decided to go back to the emergency room - a different one this time.

When we pulled up to the ER my breathing was becoming labored and I was processed fairly quickly. At this time I asked my fiance to document how I looked with his camera. (He continued to take pictures throughout the whole experience. I am debating whether or not to post them) The first photo shows me with red spots all over my body, red inflamed eyes and huge, swollen lips.

The ER staff quickly realized that I was having some sort of reaction and, because they are a teaching University hospital, called in a group of various specialists to look at me. At first it was a toss up between adult chicken pox (shingles) and SJS. They put me in a private room, put me on IVIG and took a skin biopsy. I was kept there overnight for observation. The diagnosis of SJS from the NSAID Piroxicam came in the morning after I was moved to their ICU because my breathing had become difficult again.

By now the red spots were getting bigger in size and it was clear that this was not going to pass quickly or easily because I had been on the Piroxicam at the strongest dose for over a month and this particular medication has one of the longest half-lives of any medication on the market. In other words, it builds up in your system and it takes a very long time for it get back out. I was put in an ambulance and taken to Grady's trauma burn unit in Atlanta, Georgia. I stayed there until July 6th.

Over the course of my stay the SJS became TENS when over 80% of my top layer of skin (the epidermis) blistered, died and came off. I was treated the same as someone who had 2nd degree chemical burns - only mine came from the inside out. My internal organs also sloughed, causing my throat to get filled up with dead tissue. I was given a catheter - a very painful event because by then my vagina was so severely inflamed that even regular urination felt like razor blades (please know I am not exaggerating). I was given Hydrotherapy every day - an intensive bath in which dead skin is actively removed. After a week I was put into a medically-induced coma with the drugs Versed and Phentonyl, given a tracheotomy and put on a ventilator.

I stayed like that for over 3 weeks, including 10 days when my lower layer of skin (the dermis) was almost completely exposed and my epidermis (top layer of skin) was failing to grow back. With each day that passed my chances of survival decreased greatly. Amazingly, my skin finally began to grow back and my recovery thereafter was actually fairly and comparatively fast. Over time I began to breathe on my own and learned to walk again. On the second to last day the feeding tube that had stretched all the way from my nose down to my lower intestine and the life-saving yet annoying tracheotomy in my neck were finally removed.

Since coming home this has been my life:
-Moisturizing my dry, scarred skin, including the patches on my left arm where I had a secondary infection and on my neck from the tracheotomy
-Dealing with my severe dry eye by using preservative-free eye drops, Restasis eye drops and nightly ointment (I don't believe the Restasis is working)
-Not being able to drive, work or do any other eye-focus oriented activity
-Going to physical therapy twice a week for strengthening, stretching and conditioning
-Trying to find a general physician who will be my doctor. I was turned away by 7 so far
-Going to appointments to see Dermatologists, Opthamologists, Rhuematologists, Gastroenterologists. etc.
-Having to stay out of the sun
-Struggling with chronic fatigue
-My pre-existing allergies and joints continue to be problematic and now I am advised not to use any medication unless I absolutely must, so treatment is tricky at best
-Last but not least, I had to postpone my wedding. It's hard to be bride when your fingernails are falling off, you have a bald spot right on top of your head and your skin is unpleasant to look at. I would say the emotional toll is nearly as great as the physical.

Thank you for taking the time to read my story. I hope the information herein is helpful to others. Feel free to contact me if you have any questions.

Thursday, October 11, 2007

Not preachy but promising (I think)

First, I have to warn you this is a very long post! But it is full of great news!

I will start with telling you my latest medical news: Last week I had a blood test done for a condition called "Sjogren's Syndrome" because I am showing all of the symptoms of dry skin, eyes, mouth and fatigue (you can learn more at I was actually disappointed to learn that the test came back negative. It may not make sense, but considering that I have the symptoms anyway, it would have been comforting to be diagnosed because then there is one less unknown. Of course I may just have to accept that this is just how my body is now and it may never have a "name" and that is okay.

Yesterday I had my long-awaited allergy test without any complications. The test was done not so much to find out if I have allergies, we knew that already, but to find out specifically what I am allergic to. With this information a special serum will be made up into "allergy shots" made just for me which we hope will greatly improve my quality of life. You may not have known that I was already home-bound this spring because my pollen allergies were so bad.

Then today I went to my also long-awaited eye doctor follow-up appointment. I was not surprised when the Opthamologist told me that the Restasis medicated eye drops were not working and that is okay with me anyway because they burned when I put them in my eyes. I was pleased when she immediately suggested trying a new treatment with these "scleral lenses" because after much research of my own, these seem like the best option. And it was good to find out that they can fit me for theses lenses there at Emory University, instead of having to fly several times to Boston like I originally thought. I believe this is great news because I have heard other SJS survivors claim that they get "their life back" and their eyes are no longer in pain after getting the scleral lenses. God-willing the lenses will do the same for me! I am grateful because I am going for my first lens fitting tomorrow morning.

In addition, she (Dr. Song) was very pleasant and more understanding of my situation than most doctors I have encountered, which was relieving and comforting because it helped me feel more at ease and confirmed that I am not crazy. It is sad that many doctors brush me off or disregard my concerns, for what reason I do not know, but it
makes me feel ashamed or like I am blowing things out of proportion when in my heart I know I am not. She is leaving Emory to go bless Veterans at a hospital in Asheville, NC next month, but she has referred me to an opthamologist somewhere else who she holds in high regard, so I am hopeful about that.

Last, the doctor told me that she would normally suggest plugging up my lower tear ducts to help my situation. The lower ducts are actually where your tears drain and plugging them up helps keep the few tears that do come from the upper ducts to stick around longer. BUT the prayers are working and my lower tear ducts were scarring up and therefore plugging up themselves! Isn't it weird and wonderful how something that otherwise would be a bad thing can become something so good? So instead of having to go through surgery and putting some foreign object in my eyes, it is God's hand that is helping my own body "heal"!

Now on to a response to an email I received from a woman who sent out a mass email prayer request that reached people ALL OVER THE WORLD. Yesterday I received a forwarded response from a woman in Africa who has AIDS and leads a women's AIDS support group. Here is a snippet from her email:
We continue to pray for her total recovery and we trust that her tear ducts start functioning well again.Yesterdy it was our independence day and my prayer group and I went to our Diocesan prayer mountain.They fasted for Katie's total recovery I can not personally fast because am diabetic but I also forego something to plead for Katie's condition.

When I first read Beth's email my brain and heart became twisted up into a knot of almost sheer lack of understanding. It was and is still nearly incomprehensible to me that these women, who are complete strangers and face dire straits of their own, took the time and energy to go to a mountain and fast with me in their hearts and prayers. It is simply ASTOUNDING to me.

It made me feel so moved and so small at the same time. This, in combination with recently listening to "Mere Christianity" on audiobook led me to write the following diary entry today. I want to share this with you as a matter of testimony to God's power and to offer a reciprocal embrace in His Love.

...I am still facing some difficult and lasting after-effects of SJS/TEN. All-together the situation has been traumatic and life-changing. But I cannot just think of the bad things like scars and fatigue because there are positive facts and that is what I am working to focus on in life:

1) I did not die - I am alive! Other than the obvious reason for my personal gratitude, I am thankful for the sake of my loved ones. I shudder to think of what kind of grief Jon would have gone through, especially considering the previous loss of his Mother. And my family also would have had to deal with losing me at a young age in such a drastic and truly gruesome way. During the worst of it my physical
deterioration would have certainly prevented an open-casket funeral.

2) Jon and I have a closer and deeper bond. Like many people who endure hardship together, our love and commitment reaches to a greater extent than before. To experience such devotion expressed towards YOU is something that moves and changes you in a way that can hardly be explained with words. My level of respect for Jon, which I am sad and ashamed to admit was poor before, has risen greatly and will not be called into question again if I can help it.

3) GOD. Before this happened to me the phrase, "God is good" was just a saying to me. Now I KNOW it is TRUE. God IS good in the truest, deepest and most amazing sense. My self-inflicted disconnect with God before SJS/TEN has lost it's strength. I used to be dismayed that my occasional moments "with" God didn't last. But now I am mindful that I MUST turn to God again and again with each new breath.

I was blessed by prayer from people all over the world. I am humbled, strengthened and positively challenged by this. I was doubtful of the power of my little prayers, but now I see that doubt was less in me and more in God and that was wrong. God does not need perfect prayers to do His perfect work. In fact, I am not sure he needs my prayers at all to signal to Him that someone is in need of His care. He is All-Knowing already without my help! But instead of discouraging me, this fact ENCOURAGES me to pray as a matter of showing my faith in His work and a willingness to accept His will.

My personal truth is that if it had been His will for me die, I think I would have actually been quite pleased. I like to think that though my faith-growth at that point (and still) was meager, I would have been accepted into His arms in heaven. And while causing grief to those still on earth, I would personally have been very happy. It is HEAVEN, after all!

But I am not really surprised or disappointed that I was not gathered up by angels to go on to my "immortal life." I am confident that there is still much for me to do on earth and I feel that my continued life (or lack of death) confirms this. And while I am frustrated with my momentary human confinement and physical limitations, I try to not be bitter. The frightening and mutually comforting thing is that this not my path to Him but His path for me.

I feel, and hope that it is true, that I am surrendering more and more of my "self" to Him and as a result I expect to exponentially improve my life and who I am. I use the word "expect" not like a parent expects a child to obey, but rather in the hopeful sense, like hoping the cake tastes as good as it looks. And anyway my expectation comes not for myself but from a desire to please God. So, really, it comes from God for God. Just like the electrical cord conducts the power from the wall socket to the light the lamp, I just have to open myself up to become a good conductor of His energy/love/goodness/will.

I imagine all of this will take a lifetime of practice, but then that's the point I suppose. And that is GREAT, as far as I'm concerned.

I pray to my/our Dear and All-powerful God with love, respect and with
a goal of surrendering my "Self" to Your will. I am grateful for the
life and guidance You have given to me by way of wonderful, loving and
strong people around me, as well as the love and strength I have
within me. Please accept my efforts to learn that while I may not have
the power to carry on, You DO. I ask for and am grateful for Your
never-ending Love, Forgiveness and Grace in my life as well the life
of each and every person on earth. I am in awe and wish to become
nothing but a reflection of You. In Jesus' name I pray - Amen

With that I hope this post finds you well.
In loving faith,

Tuesday, September 25, 2007

How I am looking these days...

Here are some recent photos. You'll see larger purpley-red scars on my left arm - that is from where I had a secondary infection. You'll see bright pink spots on my right arm - that is the light scarring I have all over my arms, torso and thighs.

For the most up-to-date photographic version of how I am doing, go to my Flickr "Sicko" Set

Monday, September 17, 2007

Little Things

As I mentioned in an earlier post, I was on Cape Cod visiting family recently. During this time I finally got to spend some real time with my little 3 year old niece, Samantha. Even though I've seen her a few times before, they were when she was younger and not frequent enough for her to really know or remember me. So I was really pleased to see her for several hours over the course of 3 days - this time I think I made it onto her list of "People I know and Like"!
The relationship started off a little shaky, but began to become secured when I presented her with a little pink package of "body jewels" from the restaurant's bathroom automat. {Ah, it really is the little things that work best...remember how your parents would buy you something big but then you played mostly with the box it came in?}
A couple days later I went with Mimi (my little sister and the mom of Samantha) to see son/brother, Jonathan, play his first Ice Hockey scrimmage of the season. Sam and I went to the snack bar while Mimi went to help tie Jonathan's skates. I was worried that Sam might be freaked out that she was being left with this stranger while her mom disappeared from sight, but no, she happily clung (clinged?) to my thigh like 3 year olds are apt to do while we waited in line for a hot dog and fries (she likes ketchup A LOT).
Later, as we sat watching Jonathan skate, Samantha pointed to the still-purple scars on my arm and asked "What is that?" I thought to myself,'This is my chance to see how she feels about me!' and told her they were boo-boos from when I was sick in the hospital and asked if she wouldn't mind kissing it to help me feel better. She looked me in the eye, then looked closely at the scar and pondered the importance of her healing kisses and whether I was a deserving recipient. I had my answer when she mustered up the guts and kissed my yucky scar - finishing with an smile of accomplishment. It was wonderful.
Another Samantha story is that she was mixed up about my little brother's name: Johannes. It's pronounced "Yo-hahn-ness" but she thought people were saying "Your Hahness" and she began referring to him as "My Hahness." That is ding-darn cute, if I do say so myself (and I do). It reminded me of how when Johannes was young he called me Didi instead of Katie, so his big sisters were Mimi and Didi.
{The top pic is of Mimi and Samantha. The bottom pic is the result of when I asked Sam to "look pretty" for the camera on our way into church.}

Politics, n. Strife of interests masquerading as a contest of principles. - Ambrose Bierce

That's how I've been feeling about this "presidential race"...on both sides. Anyone else left with a sour taste in their mouth?

Tuesday, September 11, 2007

Back from the edge...

...of Cape Cod! I just returned from a week-long trip to Chatham, MA to visit my Mom & Family. The trip up was actually pleasant. I used the wheelchair service to get to my gate, which I guess it was a bit overkill since I can walk, but it was very much appreciated at that early hour and I tipped the lady nicely. On the flight up there were mostly clear skies and I wound up getting an amazing view of Philly and Manhattan. (On the way back all I saw was the Lowe's and Home Depot up 400 at exit 14 - woo hoo!)

The weather was mostly warm with a chilly breeze, which allowed me to take a wonderful nap on the back covered porch one day. I also went to Forest Beach ( where I finally had my engagement ring sized properly and they made a medical ID bracelet for me from scratch. I needed that because I had so much information on it, but it still had to fit my little wrist. It came out beautifully and it fits so well I can hardly feel it, which is good because it has to be something I'll enjoy wearing every day for the rest of my life!

On Saturday I was lucky to finally be able to see my nephew play at one of his Ice Hockey scrimmages. He was recently promoted to the "A" team in his age group and this new team will be a great learning lesson and challenge. I am very proud of his commitment and apparent good sportsmanship!

My "little" brother, Johannes, is over six feet tall now and he's only 16! He started his Junior year of high school on Thursday (i know - weird, huh?) and already he was asked to "write a poem about himself" - poor guy! I even thought of how to outsmart the teacher - by writing a Haiku - but the teach was one step ahead of me and had already said they weren't allowed :(

And just to make Jon jealous, I had both a Lobster Roll (a lobster salad po' boy) and Lobster Bisque while I was there. Yummy!

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.

Monday, July 23, 2007


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 - 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.

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?


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?}

Monday, January 15, 2007

NOLA needs YOU!

{{More Photos from the trip HERE}}
J and I went to New Orleans last week - I hadn't been there since 2000, so it was the first time for me since Katrina. It's a weird mix between renovated houses that are completely redone, empty houses that look like the flood happened only a week ago and other areas where, truly, they were probably falling apart before anyway and now the situation has exacerbated the problem.

As we drove into the area, you first pass Slidell and then the outer part of New Orleans, which, according to what you can see from the highway, is full of empty, boarded up and fenced off aparment complexes and neighborhoods. There was a Wal-Mart that had yet to reopen. J recalled having seen that same Wal-Mart parking lot full of tents when he came here about 3 months after Katrina. I was pissy when I thought about how Wal-mart was so quick to run commercials touting their support for the people affected by the hurricanes, but now can't seem to be bothered to reinvest in this community and offer much-needed jobs. But then, I didn't see really any work being done on the abandoned neighborhoods (except demolition) - so maybe there simply is no need for a Wal-Mart?

We arrived to our hotel, the Rennaisance Arts, got cleaned up and then headed out for dinner. We asked around for a true down-home style NO restaurant, but we wound up at Brennans and that wound up being one of those typical places that is mostly known because it's been around for-EV-er despite the food now being mediocre and waaaay overpriced ($100+ for 2 people and only 1 drink each!). BUT we shared a wonderful Bananas Foster, which was especially yummy because apparently this was where the dessert was created (due to an overflow of banana shipments). I like eating history!

Next day J had to work and I took a long walk down Magazine Street. I walked for almost 3 miles and saw the aforementioned mishmash of up, down and everything inbetween houses & businesses. Once I got to the retail section, that's when the human element, namely desperation, kicked in. Every salesperson I met had an underlying panic/fear/stress about the lack of tourists and money being spent. There they are, trying their darndest to get back to normal, opening their stores everyday, but with few people coming by to shop. They were very chatty - much more so, I believe, than before Katrina - and were full of questions. Where I am from, why I was there (J's business), what kind of business...? This was one time I felt no guilt spending money freely because I knew they needed to business so much.

I didn't leave a single store without the shop keeper strongly encouraging me to come back and bring friends. Or at the very least tell everyone I know that it's time to come back to New Orleans. My fave shops: Winky's (I spent the most here for some great funky clothes and a postcard that says "Gnome on the range"; Brass Menagerie (a reproduction house hardware store run by an old couple and their cat with the heart-shaped shot on it's nose, Domino); and Derby Pottery.

That theme carried over into the evening when we were given two rounds of drinks by 2 different people at the d.b.a. bar on Frenchman Street.