Saturday, February 3, 2018

The journey continues

It's been a while, hasn't it? I will not be posting on here anymore, but I decided to create a youtube. Check it out if you'd like.

Description: Excuse all the jump cuts, I tried my best to shorten the video as much as possible. I noticed I talk pretty slow, so go ahead and speed up the video LOL

 Never thought I'd be still going through this even until now. Don't take any of this as advice, I'm just here to tell my personal experience with Topical Steroid Withdrawal/Red Skin Syndrome.I would say this is more so the emotional aspect of it, rather than physical.

My old blog:

If you have any questions, feel free to ask them in the comments :)

Wednesday, September 9, 2015

Month 26

Since June, I've been going through... Yes! Another flare!! I guess I had spoken too soon again, haha. This has to be my second year anniversary flare. I've been hit pretty hard with almost a full body flare and I'm still recovering from it after three months. All of my worst areas are on the same exact spot from each year. So darn stubborn! My legs were so clear and soft for months and my feet were healing really nicely, and then bam! I get these really nasty raw and oozy rashes on my calf and feet that I got two years ago and the year before, accompanied with some more rashy, flaky, and oozy skin all over. Luckily though, my face and neck stayed completely clear this time!!! My neck used to be such a disaster! My hands were also slowly healing, but then they got worse again, and my wrists now look like how they did last year. My arms, back, and stomach aren't so bad, just a bit rashy and dry.

The past few months I've been eating really clean. No processed foods, and I've also cut out gluten and dairy. Not really for my skin (and it doesn't really seem to make a difference), but for my overall health, since I know it's definitely not good to stay inside the house all day while eating cake and chips, haha. On and off now, I've been using tsw as an excuse to eat unhealthy. 
"I feel like shit right now, so I need to treat myself to something! Can't go out or do anything fun, so I might as well eat all the cookies in the house!"
Not to mention, ever since tsw, I'm slimmer than I have ever been, which also gives me another excuse. I've always carried some extra weight around my stomach and thighs, so I'd often have to exercise and be conscious of what I ate (I looked kinda chubby throughout most of middle school haha), but now that it's gone, it's hard not to feel like you can eat anything you want.

However, recently more than ever, I realized I needed to be eating healthier, not just to be skinny, but to stay young and healthy. I don't want to develop any health problems, so I've been really strict with myself about it. I also try to get in about 15 minutes of sunlight a day too. Im in the house most of the time, so I really need that sunlight.
I'll be turning 19 this month, and to be honest, I still haven't felt like I've turned 18 yet because I've done nothing these past two years. No school, no social life, no fun or any celebrations. Just dealing with the hell of tsw. Time is going by so fast, and the uncertainty of when it will all end really makes me anxious. I feel like I picked the worst time of my life to go through tsw. I don't want to be so pessimistic, but the truth is that I hate my life right now. Despite saying all this (I know all I do is complain) I have already decided that this is the decision I have made and I will stick with it until the very end. I know I can get through this. I will, and you will too!

Saturday, March 14, 2015

Transitioning To a Normal Life

Hey guys, it's currently 8:30am and I haven't been able to sleep the whole night, so I thought I'd just make a little update! Lol

So here's what's up... I've been feeling amazing lately! I'm probably the best I've been since the whole withdrawal. My whole body has been healing very well, and my skin somehow survived the harsh New York winter! I've had some dry skin and rashes here and there, but it was definitely nothing to complain or be bothered about. Also, although I am still taking baths, I think it's soon about time I start taking showers (this gets me so excited because I've just been so dependant on baths!!)

My feet that were really bad are almost completely clear. I just have this one spot on my left foot that oozes a little if I scratch it too hard, but it hardly bothers me, so I can walk all I want! My arms get a little rash from time to time, but it usually clears up and hardly bothers me as long as I don't wear irritating clothes. My legs, which I have always had a problem with for so many years are actually clear, just some discoloration and a bit of dryness. If I give it some more time, my legs will actually just be normal smooth legs! It's unbelieveable considering how bad my legs used to be. I always thought I'd have to live with my rashy legs that would always get comments whenever I wore shorts. I sure can't wait for this summer! <3

My hands however, are my worst area right now. Just last month I had blisters all over them and they were just a painful,bloody, oozy mess, but for the past couple weeks, they have been healing nicely. I think it might possibly be due to all the different soaks I've been trying out everyday like ACV, tea tree oil, oregano oil, garlic, honey and probably a whole lot other stuff I just don't remember! Lol. It's really clearing up though, and I hope it doesn't flare again, at least not too badly.

Thing is, I've just been so desperate lately because I feel like I'm this close to having a normal life again, and I just want that to happen so I can finally start college. I haven't applied yet because I am still unsure if this Fall would be too soon. I'm just still not used to going out every single day and it's still too early to decide, especially since you never know when you might flare again or how bad it'll be. I don't want to be worrying about my skin so much everyday while attending school, so I definitely want to be in my best condition.That's why I've been trying to go outside whenever I can, and start making sure I go outside everyday to prepare myself. I don't really go out for very long (a couple hours or less). Going out too long makes me very nervous and fearful, probably because I'm so used to being in the comfort of my own home in case something happens to my skin. I know I have to toughen up though, because my house has just been like a crutch for me, and it's so hard to let go. 

I've never been so anxious and excited for the future (maybe that's why I can't sleep right now).I really feel like an end to these days are finally coming along. I had written a long list of all the things I wanted to do once I get better, but now that I'm finally better, there's just so many things to do that I don't know where to begin. I guess sometime soon I'll be going on that shopping trip! Ha! Lol ;) I need to throw out all these old smelly clothes!

If you're in a dark place right now, I hope this post encourages you. You WILL heal, so please don't give up. I'm sending my love your way! <3

Thursday, August 14, 2014

Some pictures!! (It's about time)

It's been a while since I said I'd post pics, right? Well now I'm finally doing it! Unfortunately, my skin had been getting worse as you can see,but I take that as a sign that there is healing to come very soon!

January 2, 2014
7 months
My skin was clearing up pretty nicely. I guess this was my "break". After this is when my skin starts to get worse. 

April 20, 2014
10.5 months

July 9, 2014
1 year/12 months 

August 14, 2014
13.5 months 
Please excuse the bath pics, I know it's hard to compare wet skin to dry. It's just that the worse my skin gets, the less I want to look at it or take pictures, so I usual end up throwing on longsleeve shirts and sweatpants as soon as I get out of the bath. From that point on, I just really hate looking at my skin and end up not looking at it until my next bath. It's a silly excuse, I know. 

I'd say my face is pretty much 95% healed, maybe even more. My eyelids just get red and dry time to time, but it's not really a big deal.  Yup, and that's oil on my face! Lol. My face actually gets oily now!

I've been homebound again! However, just a couple weeks ago, I was bed bound! I'm just happy I can at least move around the house again.  Hoping that from this point, I'll be healing quicker than before. I'm currently 13.5 months in. Wow, has time passed!

Hope the pics are helpful! 

Thursday, June 12, 2014

11.5 months!

Wow, to think I'll soon be hitting the one year mark. To be honest, I thought I'd be much more excited, but unfortunately not much has changed. Yes, things are waaaaay better than my first few months of tsw, but right now I feel as if I haven't been making any progress at all. In fact, my skin is doing worse now than it was in the winter.  The ooze has returned on my hands and legs, and occasionally on my eyelids and chest after I go out somewhere.  

I notice that every time I leave the house, my skin gets worse, even if I'm only gone for less than a couple of hours. I decided to take my nephew to the park a couple weeks ago, thinking it would be a good idea to get some fresh air, but that didn't turn out so well. Seems like each time this happens, I end up lying in my bed for like, a whole week until my skin starts to clear up and I feel better again.  Ughhhh it's so frustrating.  I don't know what's best for me anymore. I keep thinking of all the time I'm wasting doing nothing, and so naturally, I decide to push myself a bit, and then end up regretting it.

There are times I wish that I had either waited to do tsw or had started earlier. I constantly think of how I should have been graduating high school with my friends, going to prom, having my photo in the yearbook, and just overall enjoying my senior year of high school. My dreams of getting into a good college is what had motivated me into doing my best all my high school years. Because of this determination, I was the goody two shoes who did all her work and always came home before 5 on school days.  Sure, I understand that I only need to wait one extra year, no big deal.  But what hurts the most is seeing your classmates who have drastically changed over the past year while you haven't changed at all (in fact, it feels more as if you've sunken down to the bottom of nowhere). That guy who would always cut class and never do his work? In just this one year he got his act together and is going away to college. That friend who'd always ask you to tag along to some party and stay out with her past midnight? She's now an A+ student. That girl who would always smoke weed in the girls bathroom? She's cooperating with the teachers so she'll be able to graduate this year. It really hurts that I've tried so hard, yet all I can do is wait while everyone else moves forward.

I guess this has all made me realize not to take things for granted. When I think like this, I feel as if tsw is making me a stronger person day by day. Now I feel as if I know how truly amazing it is to live.  

Sorry for rambling, I know I tend to get off topic and talk of things unrelated to tsw.  Maybe I should just learn to enjoy this challenge and focus more on what I can get out of this experience. (I know I say all this sappy stuff, but in all honesty my attitude is terrible and I'm nothing but an emotional wreck!) 

I hope you guys can all somewhat try to enjoy the rest of your day, and then hopefully the next day and the next! 

Monday, April 28, 2014

The start of another flare

Just when I thought everything was going so perfect... My skin has been clearing up and my main problem areas were just my wrists and feet. The rest of my skin had just been dry, but not so much of a problem.  

Well recently I've been going out more. Finally meeting up with my friends and taking long walks and stuff. Today I went to a little cherry blossom festival so I was out in the sun all day (could this be the cause or am I going to have another major flare??). When I got back home my eyes were feeling a little swollen and I had an itchy patch of skin on my chest. I went to sleep and when I woke up in the middle of the night and my eyelids and chest were oozing.  This came out to be a big shock for me. Its been months since my skin last oozed. Not to mention, I had thought that my eyelids and chest had returned to completely normal skin. But well, I guess not!

I know it's been a long time since I last posted, and I was planning on posting good news of how much I improved, but that'll have to wait for another time. I wish I had better news, but this is tsw we're talking about, right? It sure feels like tsw is some sort of tease who gives you signs of hope, then completely turns you down, haha. What a relationship I've had this past year <3 

It'll be 10 months in a few days, hope this post didn't discourage anyone. If things get worse, I'll update you guys. Wish I could be a little bit more positive about this, but I'm still in a bit of a shock. For now I guess I'll just say, happiness is just around the corner. Keep fighting guys!

Saturday, February 8, 2014

Quick update

I apologize for not updating in a while. I've been really busy with trying to keep up with all the school work I have missed. When I get the time to, I'll tell you guys what has been going on with my skin and all. For now (by the way, I just started month 8!!), I'll just say that it seems to be somewhat flaring? I'm not exactly sure if you'd all this a flare or not, but it's very mild. It's been like this for a while, but nothing serious. I've been really itchy and I have rashes on my arms, hands and legs, but it's nothing painful and there's no more oozing (YAY!!) My skin seems to be healing very slowly. It feels like it's not healing at all, but I guess I'll just have to wait patiently.

I know this was a very short update, but I just wanted to let you guys know I haven't forgotten about this blog and that I will come back to write more, I'm just not sure when. My prayers go out to everyone out there who is going through the hell of tsw. Just know that you're not alone and you will get better. In fact, once this is all over, you'll become an even stronger person than you were before.