Week 17 update – flares :(

Hope everybody had a wonderful Christmas! I had a great one although it was a bit marred by the fact that I was flaring. I’ve been flaring since last weekend but the flare intensified two days ago. My neck hasn’t even this dry since month three or so. My back had rashes and bumps for the first time in a while as well. Now my skin feels right from the dryness. It seems the best thing for healing, for me, is if I just chill and rest on my bed but sometimes I can’t or don’t want to do that and I seem to pay the price.

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Look how dry my skin looks! And that patch on my raw jawline just doesn’t seem to heal. My legs are bit oozey – sticky ooze not gushing will-soak-through-all-the-fabrics oozey. My neck is less ooze and just scabby which I think makes for worse pictures. How was everybody’s Christmas? Hope it went flare free!

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Four month picture update

Here is the pictures. Looking at pictures from month one, I have come a long long way. The lighting is so hard to get right with my iPhone and so I include multiple face and arm pictures taken from various lighting. My skin is definitely stronger and I think I’m getting stronger internally as well!

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I think the picture taken furthest away is probably the most accurate depiction.

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I am definitely going through a mini flare – I woke up once or twice and scratch my arm wound like crazy. Edit: just started my period, flares always come when I have my period Hence the red raw skin. My butt looks like that but worse and more scabby and oozey.

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There are actually quite a bit of soft to touch, almost normal skin on my back and stomach. My nipple oozes just a bit now, nothing compared to what it used to be.

If you have any questions or want better pictures, let me know! Happy healing everybody!!

Four month down – quick update

Oh tsw, you suck.

Back when I still was using topical steroid, I had a random thought. It was the night before a banquet – the type everybody dresses up and look really pretty. My main worry was not what dress I will wear or other silly girly thing. I was worried about my skin. Then the worry projected into the future and I thought, “gee it would suck if on my wedding day my main worry would be my skin”

Well the worry may be painfully spot on. My skin seems to be doing ok, especially when I consider how far I am (not far) in my journey. I sleep really well, and there are good chunks of time -about an hour or so- that I don’t even think about my skin because I’m itch free! When I say I sleep well, I mean usually (~75% of the time) I don’t wake up for about eight to ten hours. It’s amazing! When I do wake up though, I scratch away and I become a bloody mess. Despite the improvements, however, I wonder if I’ll be presentable enough at my wedding. I think the worst thing about tsw is not the pain and itch itself. It’s living in constant fear of the next flare. I live in fear and worry, scared that I will unknowingly eat the wrong thing, do the wrong thing, be at a wrong place and I’ll be a itchy oozing bleeding mess.

So I worry. Currently my face and lower butt is the worst area, so I worry. In the end I know it’s about the commitment and the man I will promise to love, but I can’t help but wish my skin will behave and I will look good on my wedding day. A part of me is considering going on immunosuppressants, but last time I was on it I had the different type of infections on my face, so I’m worried it might make the situation worse. And if I remember correctly, it didn’t help too much anyway.

Pictures will be coming soon. Overall I’m grateful for the progress I am making, but of course, I wish I could be making it faster. I am currently off traditional medicine, as of about a week and half ago, and been eating all the meats. We shall see how that fares with my skin.

Month three update (week 13!)

Since pictures speak a thousand words:

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And there are so many pictures! I decided to include pictures of my leg for the first time because now they are heavily affected. However my face and neck is no longer oozing a lot which has been a huge!!! Relief. Also I’ve taken pictures of my hands because they have rashes which has never happened before. Oh and note the ring. It’s such a pretty ring and pretty things come by so rarely during TSW process. :D and yes! I am engaged! Woo! A man who will stick through you during TSW is rare to find and I am so blessed to call him my fiancé! My butt and nipples deserve pictures too since they are also affected but I don’t think he would appreciate such pictures floating around.

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Scabs that are healing are extra itchy (which sucks big time as I feel that would dramatically lengthen healing of the wound). I’ve been sleeping really well (no waking up with itchy fits!) until last Thursday. It’s a pity I didn’t take a picture then because my face looked semi normal then. Since then I’ve woken up few times scratching. Last two nights I woke up once. Asian food places makes my skin extra itchy after so I really should avoid them no matter how yummy they are :( The palms of my hands were itchy today for the first time I hope it doesn’t spread.

Compared to people on the forums I seem to be doing better which I am grateful/confused/excited but not really because I’m still very sick. That said I was able to go out and go shopping for food and generally function better which is really exciting and frustrating at the same time because I get tired and itchy very quickly. My skin is noticeably stronger and ooze less. I can scratch skin that is not compromised for a while before it breaks. My skin is less dry than it used to be. Although my skin seems to go through constant cycles of mini flares (few days of increased irritation, couple days of healing, couple days of reduced irritation) there are days that I go most of the day without major itch fit. At sundown however it seems my body gets itchier. I am not using any moisturizers. I think it has been helping me a lot. I am also still taking traditional medicine, avoiding chicken, pork, caffeine, alcohol, and bean sprouts. I try to avoid too spicy, salty, or fishy foods. I rest a lot and am getting really out of shape. My skin loves the cold even if I feel like I am freezing. I’ve been told sun is great for healing skin but I have trouble staying out without getting itchy quickly. If I continue to heal at this rate, I think I may be done in a year! Here’s to hoping and praying.

Month two (really week nine and ten) update

Oct. 22: I have been put on more potent traditional medicine. Not sure if that’s what it was, but I was doing a lot better for about two weeks. I was sleeping a lot better, had bit more energy. Then this Sunday I got another flare and became a blistery itchy person again. Still, I am not oozing as bad as I had month one, which has been a huge relief.

Nov. 4: woe is me my skin decided that it doesn’t like me again. Less of the blister cluster this time around though. Actually like none at all. I’m just very itchy and skin is raw and uncomfortable. I have to move very gingerly because it hurts to move. Bless the boy’s heart he scratched my back and generally tried to distract me from the pain. The raw patches of skin is oozing, but it is nothing compared how much I used to ooze and how much people on the forum seemed to be oozing. Fight on skin warriors! (That sounds Trojan-esque… oops). I am still extremely dry and flaky. Face skin is rough to touch. Scabs everywhere! Yum. I’ve noticed that when I am having rough day, the normal skin/tsw and therefore red skin demarcation on my wrist gets more noticeable. I am sleeping much better though! The past couple nights were a bit more difficult since I was more itchy, but it is still better than in the beginning. Nerve pains are less severe and happen less frequently. Woo!
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Oh and hair loss! I’m losing so much hair whyyyy. My eye brows have definitely shed and is attempting to grow back. My hair just seems to continue to shed. The swelling of the face however went down a bit.

Six week update

Woo it’s been a month and a half! Yesterday was my first “good” day since I moved back home. I wasn’t super depressed! In fact, I felt motivated to prepare my own food and eat it! It’s a big deal, as sad as it may be. I gotta celebrate any and all victories! And I slept really well yesterday- so not last night, but the night before. I went to sleep before midnight, and never woke up! Last night however, I woke up couple times and was itchy. The saying one step forward, two steps back is really true with tsw. No matter, I will still celebrate because I feel better than two days ago! I had a flare and was the most uncomfortable I had been recently. I couldn’t sleep, spent four hours in the tub, was miserable when I came out, itchy, ooze, stressed and depressed mess. There were tiny vesicles everywhere, and one light scratch was all it took for the top layer to completely break and start oozing. It’s ridiculous – my epithelial layer’s integrity is completely compromised. My face feels like thick sandpaper. A lot of that is starting to flake over though, I’m hoping I will have at least few days of respite before the next flare, but we shall see!

The Beginning – wk2

Here I am, 5:23am, unable to sleep. YAY burning and stinging sensation in my groin area! Tmi?? Sorry, you should probably get used to it, as topical steroid withdrawal isn’t the prettiest of things, and I intend on sharing all the gory aspects. I apologize in advance :)

So, it is official. I have been diagnosed with steroid addiction by Dr.Rapaport. Even though I expected it, it was strangely intimidating/cathartic to hear it out in the open. He gave me hydroxyzine and gabapetin for sleep and easing the itching and burning. I’m very wary of drugs and I already know hydroxyzine, or any other antihistamines for that matter, fails to makes me drowsy, which makes me even more reluctant. I also have a patch test going on in my back, which is spectacularly itchy and burning. The visit ended up costing a LOT OF MONEY since I am without insurance. Yikes.

I am so, so lucky to have the support of my family and the boy. I have officially decided to withdraw for from school for a year so that I can focus on withdrawing from TS. Now I just gotta figure out all the logistics of it. I am so relieved I will not have to go through the hardest year of my college career while being extremely sick at the same time. I just gotta stick it through MCAT (of which studying went to hell thanks to constant discomfort, lack of sleep, and overall reduced desire to function….ah shit) and  CalTeach internship for da moneyz.

So far gabapetin didn’t do much for me. I look like a scary monster. My eyes are so swollen seeing gets complicated and I’m oozing in places. Super attractive… Poor boy he had no idea what was coming. To be fair, neither did I.