Week 15 + 16

Ok so I've been in this horrible flare for over a month now.  I think I'm going to go crazy if it doesn't calm down soon. 

Recently, I've been noticing a lot of new things.  

-Lots of pins and needles

-Sweat

-oozing around collarbone and chest area

- not to gross anyone out but..... Oozing from my nipple (yuck!!!)

-hives

One day I was feeling really itchy and next thing I knew, there were hives all around my back. The next morning, I was surprised when I woke up to my body all damp. There was sweat coming from my back and stomach.  I knew this was definitely not ooze. I had the full body ooze before in month two and it felt nothing like this. It wasn't all sticky. I just couldn't believe I was sweating so much! I was really excited, but felt gross at the same time, so I got out of bed even though I wanted to sleep a bit longer. 

I started oozing from my nipples and it's really gross.  Just when I thought I had experienced everything, this happens. I hope this doesn't last too long because it's already driving me nuts. 

 

I've had no energy these past few weeks.  Most of the time I've just been lying on the couch watching tv or playing video games. The only time I get up is to go eat or take a bath. I feel like I've been so unproductive.

Sorry I only have one picture, I just don't even feel like looking at my skin most of the time.  Once I get out of the bath, I cover myself up with clothes and try to keep my mind off of my skin for the rest of the day if I can. 

I couldn't really get a good picture of my face. This picture really sucks. My face looks far worse than this in person.  In fact, when I saw myself in the mirror, I felt bad for whoever had to talk to me for more than five minutes cause it just looked horrible. Every time I scratch, or even if I try to moisturize it with something like oil, it oozes a lot. I've just been trying my best to leave it alone.  

Well I hope I start to feel better soon, even if it's just a little. 

At the Pediatrician

Hm, there's been so many changes going on recently, so I'm probably going to start posting more again. Right now, I'd like to talk about my visit to my pediatrician.

So just like all the doctors I've been to, my pediatrician told me that I needed to take steroids. I tried to tell her that I believed that the reason why my skin was so bad was because my body got used to the steroids since I've been using it for so many years. She kept talking over me, saying that it's not true and that I wan't properly maintaining my body. I also tried telling her that my face has never been this bad, and I never had to use steroids on it before. But she just wouldn't listen to me and refused to believe in anything I told her.

She examined my legs and told me that I had an infection. I wondered why the doctor I went to the day before didn't tell me or prescribe me any antibiotics. Anyway, she said that my body looked really bad. She prescribed me oral steroids, topical steroids, antibiotics, and hydroxyzine (which I believe is also known as Atarax). I decided I'd take the antibiotics and the hydroxyzine, and obviously you guys already know I'm not going to take the steroids. She told me that if my skin got any worse, she'd have to send me to the hospital.

Then, she finally looked at the medical papers I needed to get signed. At first, she said that four weeks should be good enough time for me to stay home from school especially since I'd be "taking the steroids." I didn't want to tell her I wouldn't be taking them because I was afraid she really would make me go to the hospital, or even refuse to sign the papers. But then I told her that my guidance counselor recommended I stay home for as long as I need to get healed, and that school has been really tough for me, so she changed her mind and put three months.

I don't know what my skin will be like three months from now, but boy am I glad it wasn't going to be only four weeks. Now all I have to do is submit these papers and pray that I get approved.

Week 14

As I type this, I am currently in the doctors office. Wednesday's appointment didn't really go so well. The doctor was very rude. I've made an appointment with my pediatrician today, hoping that I would have some luck. I feel like this is the only hope I have left. I just can't stand being I school anymore, it's too much for me.  

Hm, I don't really have much to say except for the fact that my chest started oozing a lot. Yuck. And in between my fingers too. 

I just wanted to update you guys with some pictures.  

My nasty calf.  

My foot which is also very nasty. It really hurts when I have to put on shoes. 

My arm, which isn't so bad. :)

 The palms of my hands

More School Problems

I know this is one of the many posts I've made about school, but I felt like this one is really important.  Not just for children and teens, but for everyone reading this, and it bothers me so much.  

So lately, as you know, I've been having a really hard time at school.  On Wednesday, I talked to my guidance counselor with my mom about everything. She was very supportive about what I was doing and said I was very bright.  She told me I could try getting home instruction.  

Basically in home instruction, the city pays teachers to come over to your house to teach. I thought this was a great idea. But it turns out theres a big problem.  

First, I need to find a doctor to fill out the form saying why I can't attend school. I was expecting that, but what I wasn't expecting was that there was more to it. Next, the city would have to review it and decide whether or not I'm eligible or not. 

Which means that there must be a pretty darn good reason why I'm medically excused.  But it's not up to what I say, it's up to the doctor.  The doctor who I get to sign the paper must write something super convincing, and you know what that means. I need to find a REAAAALLY good doctor who supports me. Just finding a doctor who agrees to sign it just won't cut it. They really need to let them know just how severe my case is.  

But how will I find a doctor like that??? This is so complicated because this is just a "choice"  I'm making and all this can be avoided if I just take the steroids. This is how many people see it as and it's very frustrating. 

I'm very annoyed by the fact that something that we're going through is so serious, but there's so little we can do about it. With other conditions and illnesses, people have supporting doctors that can do so much for them, like help them get time off of work. 

But us? What do we have?

I have a doctor's appointment on Friday, and I'll probably try to get in some more next week. We are going to be on a crazy search for a doctor who can help me. Until everything is complete, I have to continue trying my best to attend school. I need all the luck I can get right now.  

Week 13- End of Month 3!!!!

Ok so tomorrow ends month 3!!! I can't believe it.  However, I haven't really been feeling much better.  It's really frustrating because just a few weeks ago, I finally thought I was getting better, but now I feel as bad as I did month 2. There is slightly less ooze than month 2, but there's still a lot. My face has been feeling horrible. It's bright red and oozing. It's also the most sensitive part of my body right now. Anything I use makes it turn red and irritated.  I'm using coconut oil for it because it's the only thing that doesn't make my face sting, but I still get a bad reaction to it.

On Tuesday I turned 17. I tried my best to enjoy my birthday, but I still continued to think "if only I didn't have to go through this, my day would've been perfect." My friends and family tried their best to make this day special for me, and I thank them so much. 

School has been so tough for me. I can't concentrate in class and I am missing so much homework since I am so preoccupied in my skin. My mom and I decided to set up an appointment with my guidance counselor on Wednesday to talk about what should I do about school. I can't wait because honestly, I'm completely fed up with everything. I know that if this keeps up, my grades are going to drop by a lot. I used to be a 90+ student, but the way things are looking now, I'd be lucky to get an 80 on my report card. Ugh. 

Weeks 11 + 12- Oh, the stress~

These past two weeks have just completely tired me out.  I've never been so stressed! I started school on Monday two weeks ago, and let me just say, things were definitely harder than I had expected.  

All day for the whole week, I was faced with people asking me a whole bunch of questions and comments. 

What happened? Are you okay? Your face is so red! Are you sick? It looks like you got sunburnt! I'm serious, it's really red, Do you want to look in my mirror? Is  it contagious?

Almost every single person I talked to had something to say about my skin. Ifnot, they were probably just being polite. Weird thing is, for once in the past few weeks, my skin actually felt a whole lot better.  When I saw myself in the mirror, I thought I looked a whole lot better too. I just couldn't believe it was so noticeable.  Back when I had regular eczema, I hardly ever got questioned. 

Somehow I lasted the whole week of school, but I really hated it. I have never been so unconfortable.

And then week 12 came. I thought I was finally improving and then, bam! As soon as I got my time of the month, I got myself into a horrible flare! My face was red, irritated, and cracked.  It was oozing a whole lot, and so were my legs.  The back of my knees were still weeping a lot, and so was one of my calves and my feet. I could hardly even walk. It was so painful. I stayed home from school from Tuesday till the whole week!

I feel so guilty for missing four days of school when it just started two weeks ago! I usually miss four days of school for the whole entire year! I'm scared that I missed out on a lot. I don't want my grade to drop. All of this is just stressing me out, and I can't find a way to relax myself.  

Today it's Sunday and I still feel icky. I really have no choice but to go to school tomorrow. My birthday is on Tuesday, and it definitely doesn't feel like it. I don't eat my birthday to come so soon! Why can't it wait until I get a little better? I want to at least look and feel a little decent on my birthday.  

Well here's some pics...

Here's my face when I woke up one morning.  Sorry if I scare you guys. This was from one of the days i stayed home from school.  

Hmm....... On the bright side.....

I think my stomach looks pretty good! My back is pretty good too! Unfortunately, this is the only picture I have of my stomach, but I really did improve so much!!!!! Starting around the middle of July, my stomach and back were so dry and flaky and so much skin would fall off.  It was so painful and I could hardly get up in the morning. It would hurt to bend my back in any way.  I remember I would be in so much pain when I bent down to pick up something. Now, I'd like to say that my stomach and back is almost, if not, completely healed. It's just a bit dry and discolored, and that's about it.  

I try to look at my stomach everyday and tell myself that this is proof that I am healing. The rest of my body might look like a complete mess, but I will get better. 

Week 10 Back to School!

So tomorrow I start school.  I a bit scared with how this is going to turn out.  This is the first time in going to be out of my house for so long in one day.  Classes begin at 7:40 and don't end till 4:00!! Not to mention, commuting round trip is about two hours or so. So I will be out of the house for about 11 hours a day! I don't know if my body can handle all that. The AC in the trains and classrooms  dry out my skin so much and it's very painful.

I hope people aren't too surprised with my appearance. A lot of them haven't see me the whole summer, I hope it isn't a shock. 

My arms actually look pretty good though.  

My legs... There's still a lot of weeping and its still a bit swollen. They might look bad, but I have to be honest, it doesn't feel that bad.  

My face and neck. Probably the only parts of my body that are actually painful and annoying at the moment. My face doesn't look bad at all in the picture, but that's probably the lighting. The dryness and the peeling hurts a lot. I do think my eyelids look a lot better though. As for my neck... It's probably just as painful as it looks. There's a lot of oozing and it's hard to turn around.  

Buuuuut, I am feeling somewhat positive right now because of the improvement! I am nowhere as miserable as I was a few weeks ago! Now if only I could stop caring about what people in school will think of me.... That would probably take off so much stress. I guess TSW will help me realize that IT DOESN'T MATTER WHAT OTHER PEOPLE THINK!!!!!! Right now I'm not 100% at that stage of thinking, but I think I'm getting there.