1 year 5 months

short entry, nothing much changed.

still red, still dry, still flaking.
arms and hands seems particularly worse than other places.
my redness is all over my body, yea..
that’s what makes me kinda sad, because it seems like everyone is making good progress but i’m not really getting there yet.

finger is still oozing, that wound reminds me of what i had on my face,
so i think it’ll take another few months before it heal up.

in the past month, i think i had a mini “flare”,
or maybe it’s just a case of worsening skin.
felt chilly for about a week, then proceeded to have super dry skin that made me feel like hell again.
sigh.
may i note that those happened before my menses arrived.
so i guess it’s partly due to hormonal fluctuations?
whatever it is, i’m not looking to my next cycle.
sucks being a girl.

my soles are having more problems now.
peeling skin that reveals spongy and raw skin.
how am i supposed to walk like that?

palms have spreading redness too.

god bless my soul.

12 thoughts on “1 year 5 months

  1. Thank you for sharing the post.

    I know its hard to see progress in the right direction but everything I have read so far says that there is light at the end of the tunnel. We gotta just keep on going.

    I am 16 months into the withdrawal. I have seen my skin go from angry to mad in terms of itching/redness/flaking/scabbing. I have experienced similar symptoms you describe. I have not seen the improvements seen by some of the other people who have gone through the withdrawals. Maybe its my skin type?? Asian descent? I dunno but I do hold out for some improvement soon and know people have come through this hellish experience alive.

  2. Hi Juliana, Kboy from the forums – sorry you are having such a slow improvement – I have also really been struggling – at 8 months and feel like my skin will never change – I was curious as to throw another wrench into the whole TSW equation – you prob dont know much about my history – but I have noticed on the forums and myself included that I have found a lot of Asians, Indians and generally people with non white skin tend to be going through hyper-pigmentation after the redness subsides, I always have had light brown skin but currently 80% of my TSW skin is also very darkly hyper pigmentated – like 10 shades darker than my own – looks like I have been sittng in the sun for days with no sunscreen – looks ugly to say the least but has been like this since Feb of this year – have you encountered something similar?

    • haha we all have the same history in steroids I guess. same story for everyone.

      skin on my calf do look darker due to some sort of pigmentation brought about by the tsw. I’m not surprised. but pigmentation does go away with time. that’s the last thing I’ll worry about. other areas of my skin are still red so I can’t tell.

  3. You poor girl…I cant believe you can be this strong! I am on steriod’s and have been every day for the last 8 years, Diprosone on my body and Elidel (protopic) on my face. I stopped using the Diprosone for 6 nights and couldn’t hack it…got up at 4am this morning and put it on😦 Unfortunately I could not stop the Elidel in fear of the flare…it’s terrifying! I truly commend how strong you guys all are that can stick it out….I’m just hoping for myself there can be another way before I have no other choice but to go cold turkey. Out of curiosity did you ever try to consciously wean yourself off the steriods?? Anyway I wish you the best of luck, and hope you get that beautiful skin you desire…you definitely deserve it.

    • don’t understand your question, but I will try to answer hoping its what you asked. I never thought of stopping steroids because the derms led me to believe that it is safe for long term use, and that I will need to use it for life.

      sadly there is no other way to stop a drug.. just have to bite through this painful and traumatizing phase. I hope you can get prepared for withdrawal if you are able to.

  4. omgoodness. I’m so happy I found your blog. I’m in a very similar situation. I’ve been using steroids for 10 years now plus and minus 1 or 2. During the first few years, I would use a little bit and it would disappear and reappear within 2-4 months. In June 2012, I have a major flareup and it never really seemed to settle. I went to the Derm and he prescribed more powerful topic steroids. I started using those DAILY(!) but when mid-August 2012 rolled around, I realized that those powerful steroids no longer worked for me. I went to the derm again and he suggested I take Prednisone for 30 days. I’ve never taken oral steroids before but have heard of all the awful stories. I neglected to use it and continued to use the steroids until Sept 13th (I hoped it would just magically disappear if I used it daily… lol!). I knew something was wrong because my skin was getting redder and places that I have never had eczema before started to flare up and have dark scaly patches. I started doing more research and found Kelly’s site (TSW) and decided to quit steroids on Sept 16th. I’m on my 3rd day of no steroids and let me say that I have been feeling downright miserable. It is nice to see that you have been going at it for a year and a bit but I was just wondering how you cope with this withdrawal period. I know we’re probably in the same age range. Don’t you have school or FT work? Also, have you used Protopic during your withdrawal since it is not classified as a ‘steroid’? Also, I’m ASIAN too! = ) — do you think climate or temperature plays a role in your flareups? I lived in various parts of Asia for 11 months in 2011 and I did not have a single flareup.

    • how i cope with this withdrawal – lots of depressing moments coupled with alot of disappointment and darkness. but it had to be done. i stayed through with brute force and the little perseverence i had left.

      i had school, i had to drag myself to school back then. it was very taxing on me emotionally and physically. later on i took a year off school.

      i have not used protopic, never considered using it because i’m scared of the burns that people experience with that drug.

      i’m sure weather plays a part in the whole skin thing normaly, but i’ve been living in a warm and humid climate, my skin was still dry. later on i realized it’s dry due to steroid use. and my skin flared from time to time despite being in asia, so i guess.. my case isn’t related to weather and climate.

  5. Hi my friend, you are still very much in my prayers and fyi…I am a white person with red hair (originally) and I have hyperpigmentation all over my chest. I am 24 months in TSW and still have sparker/itching pain in my regenerating nerves and have to take Lyrica and ativan every day and night or I have painc attacks from the twitching, itching nerves. My lower legs are finally looking helaed after 6 months of swelling and feet and ankles bloody and rrashy from itching. I have crying episodes wondering how long since I used for 40+ years and am 57 year old, but there is no turning back. Now I am dealing with the backs of my knees all the way up my back sides and lower back all rashy, flaking and sore so bad I can hardly move in the mornings. I use msm, vinegar, Epsom salts or something like that in my baths to help me move and then run on palm oil with zinc oxide in it. I might take another two years to heal…or longer? But if the itching would go…I would cry tears of joy. I feel for all of you! God bless and heals us. xoxoxo

    • hi joey, glad to hear from you.. i hope you can stop writing so much about how bad your skin is. i don’t like reading about how people are suffering, you know what i mean? i’ll be glad to be notified of how good you feel though.

      hope you feel better soon.

  6. Hi Juliana,

    I have been reading your blog and others linked from the itsan site. It has been a great comfort for me as I go through a similar journey – thank you so much for sharing. It makes me feel like we are a small community all going through a unique journey.

    I have been off ts since the beginning of this year. I’ve had eczema most of my life and used hydrocortisone for much of it. Then in the last four years I’ve been using dermovate, one of the strongest steroids out there.

    The flaring for me was manageable for the first few months or so but it has gradually got worse. The last six weeks have been really tough, as I have rashes on my hands, eyes, neck, arms and legs. My allergies have also gone insane, along with constantly running nose and insanely itchy eyes (my theory is that my whole body is trying to dump these toxins, not just through the skin) I’ve also been extremely tired.

    Anyway, my daughter who is five years old also developed eczema. We have only occasionally used steroids on her so her skin has never become addicted. Now we have decided not to use them ever! What I have noticed is that because her skin is much more responsive to different things, that when we by coincidence started eating pineapple, her eczema started calming down.

    A little research revealed that bromelain which is the active ingredient in pineapple is a digestive enzyme, strong anti-inflammatory and it modulates the immune system (calms an over-active immune system down). Anyway, I have been taking bromelain for the last few days, and although it makes me very tired, the inflammation has definitely calmed down.

    Secondly, I am also taking zinc and magnesium supplements – to precipitate wound healing. I ask myself – when the skin is constantly flaring will you become deficient in some of the vitamins needed for wound healing?

    Also I’m on probiotics to try and ensure that the primary eczema is taken care off, milk thistle to support the liver and chlorophyll to improve digestion. Anyway, quite a long post, but I just wanted to share my experiences, hoping that it might help you. Keep strong, it is so hard at times.

    Tina

    • hi,thanks for dropping by and i’m glad you found some comfort from my blog.

      thanks for recommending me things that might help.. but i want to tell you i have tried them all with no effects. that’s because my “eczema” is caused by steroid overuse and not due to any deficiency.

      lucky for your daughter, if those things work on her, keep it up.

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