Something Needs To Be Done

Remember when I was going on about home instruction and all that stuff? Well, after all that hard work my familyand I went through, we still got no help from the department of education, so I am going to enroll in online classes. 

New York currently doesn't approve of free public online high school, so I had to get my parents to pay for me to go to an online private high school. I feel kinda bad that my parents had to go this far for me. But then again, it's clearly not my fault that I wasn't approved for home instruction.  When they contacted my doctor, she told them that if I took the steroids, I should be able to go back to school with no problems. 

Well I just gotta say, "Thanks, doc!"

It's just really unbelievable that my parents spent hundreds of dollars taking me doctor to doctor just to find someone who will give me a note and support my decision to not use steroids, yet in the end, no one could help. Not only that, there was no other option I had for a free high school education.  What the heck?

This is probably the only time I've ever felt, or even thought about dropping out. I mean, could you really blame me? Here I am feeling like crap and looking like crap, and then on top of that, I have to do all of these things to prove that I am too sick to go to school? And even after all that, I still don't get approved?

Talk about unfair.  Aren't there any other options for people like us? I mean, none of us never wanted things to become like this. We never asked to have TSW. Why do we have to feel so helpless?

1 week of.....

 No neck oozing!!!!

I feel like celebrating.  My neck had been oozing everyday since August. Even one day of no oozing seems like a celebration! Let's hope it stays this way. But even if it doesn't, I'm still happy that my skin has made such an improvement!

 I still keep a towel around my neck out of habit lol.  I just don't feel safe without it.  There's absolutely no reason I even need it though. Unless I want to continue to be stared at in public for it. Especially when it's no longer summer and you can't pretend you just have it because you're sweating. 

Oh well, haha. Hope it's a good day for everyone.~

Week 18

Hey guys! Feels like it's been a while since my past post here. Figured I'd start doing my weekly post more randomly now because sometimes I just have no idea what to talk about or I'm just too tired to lol.  

Anyway, lots of stuff has been going on.  I don't know where to start. Well first off, I guess I'll say that these past few days, my skin finally started to calm down! I feel so happy because I've been in a horrible flare that lasted over a whole month, and it drove me crazy.  

One thing I noticed... A lot more hives. I don't know why I'm getting them, but I just do. One night I got them and the next day, my body was covered in bumps that looked like pimples. Yea... Really gross. Thankfully, it went down in about two days.  

Next, here's a picture of all the hair that fell out when I was washing it... I got really sad. I hope this doesn't continue for too long. 

Also, the redness and swelling started to come back. Just when I thought it was gone for good... Well it's not as bad as month two.  The redness is more separated and the swelling is tolerable.  

I've noticed that my skin has been healing at a quicker rate than before. It's exciting because for weeks, I'd look exactly the same and feel like there was no improvement. I don't know if it's because my flare is just calming down and I'm beginning a break, or if my body is just simply starting to heal faster, but we'll see what happens.  

My calf finally started healing. It's hard to tell in this picture, but there has been so much improvement!!! It's been like this for over two months now, so I'm really happy right now. 

On Friday, I had my first session of therapy. I might talk about it more in detail in a separate post, but for now, I'll just say that so far, I like it! I feel like it's a nice way to let out all these crazy emotions I'm having because for the past few weeks, all I do is cry to my poor mom and I don't want her to feel so bad. 

November has just begun. Finally finished four months. Month 5, here I come! 

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.