Week 21

Week 21... Wow, I have been feeling pretty good.  I've still been experiencing a lot of the same symptoms, but it is just MUCH less severe than before. 

-Oozing

I've only been experiencing this in a few spots like my hands, parts of my face, nipples, and ears. Wow, that's so much better than my full body ooze a few months ago.  

-Smell

I still smell pretty bad, but I think it's only on certain parts of my body.  My hand usually smell horrible in the morning when I wake up. Probably from the ooze.   

-Itching

Still very intense, but my scratching hasn't been too damaging like before

Redness

-Red from time to time, but it has calmed down a lot. My face no longer looks like a tomato 

-Dryness 

Still dry and painful at times, but I no longer feel like I am being tortured lol

-Weight Loss

Not losing as much weight as before... Kinda disappointed about that. 

So here are some pics! My feet are probably what looks the worst right now. Other than that, I think I'm looking pretty good.

What an improvement, right? Starting month 6 in a few days!!!

Finally Going Outside

I've been outside three days in one week! What a huge improvement! Since October, I've been all cooped up in the house because of the pain.  It's not only until recently that I started going out once a week to go to therapy, but it wasn't that much of a hassle. All I had to do was get into the car and my dad would drive me. Then I'd just go see my psychiatrist for 45 minutes and go back home.  

But now I'm starting to do more! I went out for a walk and shopped for groceries with my mom.  It doesn't sound like a lot, but boy, that's so much more than just sitting in the house all day! I'd say just about a month ago, I was stuck on the couch all day and couldn't even get up unless it was to eat or take a bath, and that was it.  

I gotta say though, even just going out for an hour can make me feel so exhausted. Once I get home, I lay down and end up not getting back up for the rest of the day.  It really uses up a lot of energy. So going out for more than 3-4 hours is kind of a no no for me right now. 

But hey! Soon enough I'll get better enough to go out everyday again! I can't wait for that to happen. There's so much I want to do! I've already written a huge list. 

I'm gunna upload some more pictures soon. Maybe in a couple days. Let's just say there's a lot of improvement. ;)

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!