Awful day

Sorry that my blog is taking such a downturn from my happy update a few days ago, but today was horrible. I had dance camp from 9 AM to 5 PM (8 hours, now all of you tsw people could tell me that 8 hours ANYWHERE away from home is excruciating while flaring) and the uniform was a tank and shorts. Luckily my legs are completely unaffected, but my entire upper chest, shoulders, and arms are one fiery, burning rash. You could expect how excited I was to wear that tank top. Anyway, I lathered on some BB cream all over my shoulders and arms hoping to cover up, but  the situation was quite miserable. The room that camp was held in was stifling hot, and although the AC was on I did not feel it. During the 4 hours of hard exercise, my arms were sweating heavily, making my rashes sting horribly. On top of that, I broke out into hives, with white raised bumps appearing all over my arms. It felt like someone had poured acid all over them, if I were to describe it. Now, everyone else on the team was uncomfortable and preoccupied with heat and sweating so no one said anything about my arms. Also, I tried to hide it with strategic hand placement and by turning my arms so that only the unaffected areas were visible.

Now, a couple hours later, my arms are still badly inflamed...I might say that this is the worst they've ever looked since I started withdrawal. I've been icing them, but I've ran out of cold ice packs and am waiting for them to refreeze. And camp goes on for another two days....but I can't just call in sick because I paid $300 dollars for this...-__- I'm praying that this hive-like state will go away soon or else I don't know what I'll do...I hope you're all faring better than I am.

I spoke too soon...

Had a great day yesterday, but as soon as I woke up this morning I knew I was flaring. I was nearing my time of the month so I guess I was expecting it. Currently, my chest, neck and shoulders are inflamed and beet red, with little raised bumps that ooze. Just with the slightest scratch my skin oozes fluid. Sigh. My face hasn't really caught up yet and is only flaring a bit around my mouth, but I assume that by tomorrow it'll follow and flare also. My arms are doing ok...still red though. The only thing that keeps me going is knowing this will all end within 4-5 days then go back to normal. Just got to tough it out!

Picture update

Having a very good day today and thought I'd upload some pictures :)

My neck actually felt ok enough to wear my hair down!

Still some random patches of pink here and there.

Arms doing better!

The camera sort of washed out the redness on my wrist but it is getting better also.

Nearing 8 Months...

Wow I can't believe I'm almost at 8 months!! I seriously never thought I'd get here, but the months seem to pass quicker in the later stages of withdrawal. On good days, I'd say I'm about 60-70% healed. I'll list out the good and the not so good:

Good:
- My facial redness is WAY better. The redness has mainly localized to around my eyes and mouth.
- Neck/shoulder/chest/arm redness is better too, but it's still pink. Looks like a sunburn
- I believe all spreading has stopped!
- Getting more sleep! It's kind of a habit now to lie in bed surfing my phone in the wee hours of the morning, but I can at least fall asleep now.
- Very minimal ooze
- Eyebrows are growing back
- I've noticed a bit of sweating? I mean, it's not dripping off me, but sometimes I feel a bit moist, similar to when you're in a humid climate.

Not so good:
- I'm still horribly itchy at random times throughout the day. This is mainly around my neck/chest/arms/shoulders. I get SUPER itchy around the lymph nodes in my neck, which are swollen up constantly.
-Still super dry and flaky. It's especially bad in the morning when I haven't applied moisturizer in hours. I roll out of bed and feel so stiff and hunch over to the bathroom to put on some lotion.
- Big flares still occur around twice a month, not as frequent as before but still horrible. Lately my flares consist of raised, bumpy red patches around my eyes and mouth that resemble an allergic reaction. Also, my eyelids swell and the area behind my ears ooze. It's especially bad around my time of the month.
- Starting to get hives after exercise, which hasn't happened before. Any sweat or heat just throws me into an itching frenzy!

Things are improving, but so so slowly. I'm starting my senior year at school in a couple of weeks (nooo) and I think I'm ok enough to handle it. Hoping to see more improvements soon!

Reflecting

Had a little flare on my face today. It consisted of a little blotchiness around the eyes and mouth that was sort of like hives? Well, within an hour or so it has pretty much died down, and I think it only worsened because I scratched it. Also, it is very flaky and dry around those areas. I'm expecting it to be gone by tomorrow at this rate!

When I was about in my 3rd or 4th month of withdrawal (my memory of this is horrible...probably my brain trying to block out the memories!) I visited the UCLA office of dermatology for an appointment because I live in LA and my dad needed a solid diagnosis of my skin problems, despite what I explained to him about ITSAN and tsw. He was certain that this doctor, a Harvard graduate , could help me. Even I held high hopes because HARVARD, and UCLA is where Dr. Rapaport used to work. However, just like any other dermatologist, she completely denied the existence of any sort of withdrawal from steroids and pressed that steroids were the only method to cure me. Thankfully she was smart enough to not prescribe me Prednisone because of my age. So, I obediently accepted the steroid prescription with a smile, walked out of the office, then promptly ripped it up. What I also ripped up that day was my faith in western dermatology.

Now that I can physically see my body healing, albeit very slowly, I feel like doctors simply cannot get away with this. Although withdrawal doesn't happen to everyone, it will literally destroy you when it does. I just want to thank the founders of ITSAN so much for sticking with this idea even though they were doubted by basically the entire medical community. Brave warriors they truly are!

Month 7!!

So, I am 5 days into month 7 and feeling great! Still very itchy at night, but my affected areas are waaay less red than before. My arms are actually almost white! The problem areas on my face have indeed localized to around my mouth and between the eyes, the only places I actually applied the steroids. Also, my neck is still a bit rough because I applied hydrocortisone there too. But overall, way more good days and way less bad days. I hope this upward trend continues!

And the cycle continues...

Good news, my flare burned out in 4 days! Now, I am just really dry but not red and burning anymore. I'd take dryness over redness any day. Here's a picture of my face 4 days ago:

Though you can't really tell in the picture, the red blotchy areas were slightly raised and bumpy. My nose was the only clear area! Now, here's today's picture, compared to my unaffected hand.

Still a bit pink compared to my hand, but my hand is REALLY pale. Anyway, it is miles better compared to 4 days ago. There's no swelling, no patches, smooth, but just a bit flaky. I hope all of my flares will continue to be this short!