2 weeks to a year (on a brighter note)

I’m writing this on my phone.
it’s funny how I lose all motivation to write when I’m in front of my laptop.
after I wake up, I will be incredibly dry and uncomfortable after a night’s sleep since I don’t drink any water during that period of time.
I must Admit I’m not as dry as I once used to be. things did improve.
back to how I lose the motivation to write, even after I take a shower, my skin will still not be “moisturized” enough.
I believe it takes some time for the body to readjust itself, so from the time I wake up to the time I finally feel more comfortable, it takes about.. 6-8 hours.
and the time when I’m by my laptop is those 6-8 hours.
so the discomfort actually makes me lose motivation to write at all.

so why am I writing now?
because I have taken my second shower of the day and I feel so much better right now.
must have been the coupled action of the water I consumed and the water from the shower.
it helps me skin stay supple for a significantly longer period of time as compared to my first shower!

with that explained,
I’d like to talk a little more about my skin, in a more positive tone.

there used to be oozing wounds on my feet that started way back in June last year. after so long, the back of my feet has gotten a lot better. the wounds have disappeared and the skin there feels somewhat normal. it’s still red and thickened, but it’s not those vesiculated flesh anymore. it doesn’t scab anymore. it just keeps producing thick skin and scales off.

the skin on my ankle has improved too, no more scabs too. but the lines are really deep, like elephant skin. it also produce thick skin that will scale off. the thickened skin that is ready to scale off is tinted with a dark color.

the raised red patches that were spreading on my feet are no longer raised. they are still red, and seems to
be spreading slower now.

coming up to my calf, the bloody wound on my right calf is still there. it is healing, some part of it has diminished and stopped oozing, but the greater part of it is still happily scabbing/flaking/oozing. the other skin that is not affected by the bloody wound seems to be normal, however it seems like the integrity of the skin there is still not 100% back to normal. it is easily damaged. when it is damaged, it will grow a new layer of skin so that it will harden and fall off. from the thickness of the skin that falls off, I can tell that the skin there is still not normal yet. normal skin will shed a thin layer of skin that is very pliable and translucent. the skin that my calf shed is not that thin nor pliable. it feels like scales, but not as thick as those from my feet.

on my knees, skin is renewing. skin there is thick and seems a little swollen. left knee is not as bad, it produces small scales of skin. right knee is pretty much a bloody wound. produces thick skin, and it oozes quite a lot. it was previously a raised patch, it seems like its no longer raised for now, but it’s still oozing.

on my thigh, near the knee area, the skin there is constantly renewing. it is very rough to touch, almost like sandpaper because the skin is actually trying to fall off but part of it is still not ready yet. hate this feeling! again, left thigh doing better than right. at the back of my thigh, it was oozing a few months back. mainly the right thigh.. now it has stopped oozing. also changing skin constantly. smooth one day and rough the other. it actually grew a little onto my buttocks 😦 my buttocks used to be smooth like a baby..! not anymore! 😦 but I believe after the skin has renewed for good, my skin will be brand new like a baby’s!

torso wise.. I think it’s the best part for now, along with my lower back. there are some scaly patches near my upper torso where the rib cage is. it’s nothing too bothersome. after more scaling sessions I believe the skin there will be smooth again. upper chest is rather dry, it flakes. upper back (near shoulder blades) are flaking. the new skin is pink and fragile, and it flakes in another day’s time. I know I used steroids there before, so I shall be patient, it’s gotta do what it has to do. can’t stop it.

left shoulder is still a mess, but it has showed some improvements. it’s healing! man, it will be amazing if it can keep changing skin and NOT heal at all. it’s been almost.. 3 months I believe since it started to become a pain in my ass (by oozing). It doesnt ooze as long as I don’t agitate it. it used to ooze even if I dont scratch it. thank god!

bloody wound on right elbow is healing. it has flattened out (but it’s still slightly raised) and no longer ooze as much. the more badly afflicted area still scabs once in a while and fall off to reveal holey flesh. right inner arm is good. left inner arm is getting better, significant improvement since a few months ago. still changing skin.

left hand has improved a lot. the skin used to be more elephanty there.. both hands still red. the wrist area has improved a lot too, doesn’t crack as much. after my second shower they look like its normal skin. still changing skin, it produces scales that fall off in about 3-4 days time. right now my left index finger is the worst finger on my left hand. and all 5 fingers have recessed cuticle. my right hand has 3 recessed cuticle fingers. one raised patch on the side of my palm, crossing into my palm. it’s red and raised and scales and cracks. I know what to expect.

my neck has been good, until a few days ago when I rubbed it too excessively in my sleep, causing it to weep, and then for the next few days the skin there dried up and hardened and scaled.. its still scaling as of now but I think it will be fine in another few days time. back of neck still dry and flakes.

ears still scales and flake too! scalp is dry too, I think there are quite a lot of small scabs on my scalp. too much scratching?

forehead is much better than before. no more oozing wound there. skin that falls off is scale like instead of the previous thick and moist skin. eyes are still a little swollen, can’t open it up 100% but much better than before. cheeks are the worst area for now because of the oozing wound. holy shit man, who would have expected these wounds to stay for so long? it’s been like 2 months already. but I believe it’s healing. face still red, though not as red as before. lips area is fragile. still peels. skin renewal!

I think I have covered all I can.

I still recall those days before I stopped steroid creams. my dry skin got progressively worse, no amount of QV cream can moisturize my skin. I am oily because I slather so much onto myself, covering every part of my skin. it’s so uncomfortable and inconvenient. after I stopped steroids, the dryness escalated. no matter how much Vaseline I apply, I still feel scaly and rough. even after trying cetaphil, which everyone said it was good, I am still feeling like a reptile.

but I’m past that for now. 🙂

time to go to bed and rest my eyes!

want to take a moment to thank god for holding on to me in my darkest moments. thank him for guiding Angels to me.

hang in there my fellow skin friends!

10 thoughts on “2 weeks to a year (on a brighter note)

  1. Hi Juliana, We stopped steroid at the same time, second week of April. I am encouraged and very happy that you are seeing improvements! God bless you and yes, God has his angels with us for sure.

    I am having a pretty bad flare after laying in the sun and getting sunburned for an hour and half. Fell asleep, yup. My bad and now this flare is red and hot and pins and needles, which just made me very sad and depressed because I was in a routine of getting to sleep by 2 am with no meds all day and then a sedative for bedtime. I am having night sweats for two months now. I wake up in pain feeling like sandpaper and skin is very elephant looking pretty much everywhere. Rashy on arms and chest, face and neck, Itching has been horrid! I sure hope this flare does not last long. I hope we heal faster than 3 years, Prayers for you my friend as always. xxxxxx Joey

    • Joey, I understand how you feel when you described bout the waking up part. just try your best to get a shower immediately, it helps me a lot.

      hope you see improvements too! god bless you! I don’t have pins and needles so i can’t understand how bad you are feeling. whatever the case, hope you feel better soon. hang in there!

  2. Just came across your blog tonight looking for help or others in the same situation as me. Have you all seen the documentary Fat, Sick, & Nearly Dead? You can find it on netflix or walmart or somewhere, looks like diet and fasting and juicing is really supposed to help, but I’ve only been doing it for a couple of months and still haven’t seen improvement, but I think my immune system might just be growing stronger. I’ve been on steroids off and on for a long time and contemplating going on them again, but I know they only help temporarily and they just suppress the immune system, which won’t help, but I am so uncomfortable in my skin and its hard to take care of my baby and be the wife I want to be. It’s hard to wash dishes and cook food and feel confident about myself. Do you all think we can heal completely and permanentyl? Feel free to email me.

      • just want to emphasize what i’m having is not eczema. i know my condition will recover, thank you.

        the doctor says what i have is severe eczema, but that’s bullshit. what i have is steroid withdrawal.

  3. Thanks Juliana, you are a brave warrior for sure! I don’t know why some of us get the pins and needles so bad? It now feels like ants are crawling all over me until I take the Lyrica and clonopins plus Ibuprofen. I can’t go a day without those meds and it feels like the more I heal, the worse the nerve itching and crawling gets. I have lots of lymph node lumps, but no more oozing. I scratch in m sleep and my feet are really itchy so I treat them up pretty good. My neck is itchy like hell, too! I begin to feeel like I am on a merry-go-round repeating same skin issues, but Dr. Rap said we will heal and that the nerves were paralyzed, but maybe the itch is still the histamines too high and steroids still in the liver? IDK~ Depressed a lot, but I will get my second wind and trust the Lord Jesus to bring us though. You are on my heart often and want to make a slide show on my site of many of us. Are you okay with me using your pics for that and the progression of your healing? xxxxxxx Joey

    To Blake, topical steroids are only meant to be used for 5 days or so and not over and over, Hence comes the steroid induced eczema and addiction. Check out my Facebook Page~ “Steroid Red Skin Syndrome and Skin Remedies.” You will see much and we have a support group also. Link is on my site and i think here, too? God bless. ~Joey

    • thanks for keeping me in your prayers and thinking bout me. you can use my photos on your website. i hope your pins and needles get better soon, i can’t help you with that sadly. you have a history of fibro so you might really need some drugs to help you with the pain. hope your skin is doing better.

  4. sugarcrusted, hi there. My name is maarten I’m from Holland and also in the process of withdrawal from skin steroids. The first months were hell going cold turkey. Then after seeing my doctor, who prescribed Protopic things started to look up. At first, I was against using any creams because it was by using creams I gotten here in the first place. But after using protopic for several weeks I could start taking normal showers again etc. Please look into this. As it helps me a lot, i can live a normal life now until the withdrawal is complete. I’m at 12 months now 🙂

  5. Both, I do remember if recall correctly that the first 2 weeks protopic gave my skin a burning sensation but after my skin got ‘used’ to it, it doesn’t burn after i apply it now.

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