Day 110 / Week 16

Hi everybody,

Sorry I’ve been MIA for a little bit, I spent some time on a lake with my family while they were on vacation.  Summer is winding down, which I am pretty upset about.  I love summer so I’m always sad when it comes to an end, right up until I go apple picking and then submerge myself in baking and fall decorating and Halloween costume planning! I only really hate the idea of summer ending, I think, because fall usually ends up being fun too! However, the past few weeks I have spent a lot of time in the sun and it seems to have helped tremendously.  It has done wonders for my mood and I can’t help but notice my skin is looking so much better as well.  It’s nerve-racking, though, to look so much better, because I worry that I will have another round of flares and go through this all over again, like so many TSW folks do.
As of now, my hands and wrists are still largely affected but are MUCH less red and also much less itchy! Still some redness and yes, they do itch multiple times a day everyday, but still so much less.  My face… dare I say it?… almost looks healed… for the past few days it has literally looked “normal”, save for a few dry spots on my eyelids and chin but its NOTHING compared to the sheer hell I was going through about a month ago. Same goes for my neck.  My entire back, pretty much from the bottom of my scalp down to the backs of my knees, is still largely affected and if anything has continued to spread and increase in itchiness.  It causes me a lot of stress that it spreads and that it always seems worse.  To be honest, I barely look at it (mainly because its on my backside so I have to peer around a mirror to see it anyway); I usually jump out of the shower, towel off, and quickly dress so I don’t have the chance to see or itch at all.  It just depresses me so I am kind of avoiding it.. its going to run its course regardless so what good is it to stare in the mirror and dwell on it?  Its too difficult to photograph and document so I am just letting it be and I think, mentally, that is good for me and helps me to leave it alone.
I am still avoiding moisturizers, for the most part, except for shea butter 1-2 times a day on my hands and the antibiotic ointment mupirocin from my dermatologist on any sketchy looking areas that are open and prone to infection (mostly just wrist, back of knees, and neck if its opened up from my scratching). Occasionally I put some Aquaphor on my eyelids if they are particularly flaky and I want to go out and look “normal”. Anyway, here are some photos of the past 2 weeks.  I’ll be honest, I took only ONE photo while away on vacation and I am proud of it! We were too busy having fun and enjoying each others company that I couldn’t have been bothered to photograph my skin, and I’m glad I didn’t focus on that.  We actually didn’t even have WiFi or cable, and it was so amazing and relaxing to feel detached from the world like that.  I’ve got to do that more often.
So here goes:

8/14/14 (R):
photo 1 photo 2 photo 3

8/15/14 (F): I had a reaction to something this day, and I am 99.9% positive it was a concealer I tried.  I’ve only ever tried wearing it one other time, and the same redness occurred and lasted a few days.
photo 4 photo 5
I

photo 1 photo 2

8/20/14 (W): The one photo from vacation. Redness still present, but not as bad.
photo 3

8/27/14 (W):
photo 4 photo 5  photo 2 photo 1photo 1 photo 4

photo 3 photo 5

8/28/14 (R):
Photo on 2014-08-28 at 14.46 Photo on 2014-08-28 at 14.46 #2 Photo on 2014-08-28 at 14.46 #3 Photo on 2014-08-28 at 14.47 #2 photo 2 photo 3

photo 4 photo 5

 

I can’t get over how my face looks.  If you look back to mid-July at my photos and posts… well it doesn’t look like the same person, that I can say for sure.  It makes me happy yet extremely nervous that this might only be temporary… but all I can do is go day by day. We’ll see!

Some things I’ve noticed recently:

  • less itching overall (though absolutely still present)
  • less redness
  • zero swelling
  • eyebrow is starting to grow back
  • still lots of flaking and “dead” skin that just falls right off.  Wheenver I take off my shirt it looks like a blizzard is flurrying from off my body! ha.
  • less oozing.  I still ooze but it is less and I also bleed quicker, if that makes sense? Before, if I scratched too hard/much, I wouldn’t really bleed- just ooze like crazy.  Now I ooze less and bleed sooner, I suppose is how I would word it.  I don’t mind this at all and in fact prefer to bleed because it doesn’t last nearly as long since the blood clots and quickly stops.  Ooze can just go on for days!
  • Sunlight is wonderful.  It dries up ooze and closes up open wounds.  I feel less itchy when I’m in the sun as well.
  • Sleeping patterns are still off, but the atarax helps… sort of.
  • It really helps me to “time myself”, that is, when I need to stop itching and I’m in the middle of a fit, I look at a clock and try to sit completely still and focus on my breathing say, for 3 minutes or so.  I usually pick a goal time and then try to go from there.  Sounds silly, but more often than not it really does help.

That’s all for now.  I hope everyone in the TSW community reading this is having a good skin day and healing well!

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3 MONTH MARK!

Hi everybody, I’m officially 90 days/3 months into topical steroid withdrawal. Not too much new here to report.  Overall, I would say in the last week my face has slightly improved along with my neck, my hands are more or less the same, and the rash on my sides, legs, backs of knees, and back is spreading and worsening. I did have an appointment with my dermatologist last week, who suggested I do the following: (1)”soaks and slathers” aka 1-2 warm baths per day followed by slathering in a rich emollient like vanicream, hydrolatum, or aquaphor, her reason being that eczema by nature has difficulty retaining moisture on the skin; (2) use an antibiotic ointment (gave prescription for mupirocin) on areas that are open and have difficulty healing (neck and wrists, specifically; (3) take zyrtec or allegra (antihistamines) daily and atarax or benedryl nightly, (4) referred me to an immunologist to rule out any question of an autoimmune disorder.  I have been turning this info over in my head a while, since I prefer to not use ANY moisturizer on my skin aside from my hands, reason being that everything seemed to aggravate my skin and cause it to itch more in the beginning.  I also dislike taking medication unless I have to, so taking something ’round the clock does not entice me. I have, however, been using the antibiotic ointment and believe that is why my neck has healed so well and so quickly, though I can’t say the same for the area on my wrist my derm was worried about. I did make an appointment for next month with an immunodermatologist who will likely do a biopsy and blood tests.  I highly doubt there are any issues there as I am sure my skin issues are from steroid use, but it will be interesting to see if anything comes up and at least give me peace of mind to be able to rule absolutely everything else out. More areas on my back, sides, and backs of legs have showed up, so maybe this is the next area to flare.  Who knows with this roller coaster ride.  Regardless, here is a look at last week’s progress:

Monday (8/4):
photo 3 photo 4  photo 5photo 1Photo on 2014-08-04 at 13.04Photo on 2014-08-04 at 13.04 #2

Wednesday (8/6):
Photo on 2014-08-06 at 12.48 #2 Photo on 2014-08-06 at 12.48 Photo on 2014-08-06 at 12.48 #3

Thursday (8/7):
photo 4 photo 5photo 2photo 1 photo 3 photo 4photo 5 photo 1 

Friday (8/8):
photo 2photo 5 photo 3 photo 4


Saturday (8/9):
photo 3 photo 4 photo 5 photo 1

Sunday (8/10):
photo 2 photo 3 photo 1Photo on 2014-08-10 at 19.58 Photo on 2014-08-10 at 19.59  Photo on 2014-08-10 at 19.59 #3 Photo on 2014-08-10 at 19.59 #4

Monday (8/11):
photo 2 photo 1 photo 3 photo 4 Photo on 2014-08-11 at 15.54 #2 Photo on 2014-08-11 at 15.54Photo on 2014-08-11 at 15.54 #3  Photo on 2014-08-11 at 15.54 #4

 

Saturday I had a reaction to something.  My skin became very, very red later in the night.  I did use a moisturizer and bit of Tarte concealer that day, but that was used in the morning and I noticed the red reaction later that night.  Nontheless, I’m going to assume one (or both) of those things was the culprit.  By Monday the deep redness was gone and my face was back to its new normal.. mostly just slightly red and dry/flaky, but not nearly as bad as it used to be. I am still having difficulty sleeping, and even 75 mg of Benedryl doesn’t seem to make a difference.  I have no trouble falling asleep, but I wake up at roughly the same times every night (12:30, 2:30, 5:30).  I usually sleep OK from 7-noon, though I hate sleeping that late!
I’ve decided I will try one of my derm’s recommendations of applying moisturizer after the shower. As I mentioned before, I really hate baths, so I have been taking very warm showers followed by a cold rinse before getting out.  I’m going to use Aquaphor since it has few ingredients and I have used it many times in the past and I know my skin does not have a reaction to it.  I plan to use it on my legs all the way up to my lower back and some on my left side and underarm as well.  I still plan to forgo moisturizer on my face.. its just too sensitive and I prefer how it feels dry, to be honest. We’ll see how this goes!

My Current Methods of Comfort

Weather_Girls_Raining_Men

Hi everyone,

I hope you like my “It’s Raining Skin” picture.  If you don’t, well then that’s a problem, because it is definitely raining skin flakes over here.  I am so flaky!! Better than oozing though I guess.
Anyway, I’ve been wanting to do a post for a while now regarding what currently brings me comfort during topical steroid withdrawal (TSW).  I’ve put off writing this for weeks because it seems that what “works” for me is always changing.  However, I think the routine I’m at right now may stick for a while. We’ll see.  Obviously take all of this with a grain of salt, because what works for one person may not work for the next. None of this is medical advice (nor is anything on this blog) but rather just my own current methods of getting through the day. If you’re in the ITSAN forums there is a wonderful blog post here that Joey wrote titled “My personal methods of comfort”; it really helped me in the beginning to have a guide of sorts for reference.  So here is my spin on that:

  • Ice packs and ice baths. Ice is the only thing that helps me calm down out of an itching fit- the bone deep, intense, drive-you-crazy type itch.  I really only get those on my hands, wrists, neck, and jawline (so far).  When my hands all over are itching intensely, I submerge them in a large bowl filled with ice and some cold water.  I slosh them around in there to get the ice moving and take several deep breaths as the cooling sets in.  I usually can only stand it for a few minutes, but that’s normally all I need.  I really try to keep my hands out of contact with moisture, so if I don’t NEED an ice bath, I don’t use one.  Typically I reach for an ice pack, wrap some tissue around it so I stay dry, and calm the itch with that.  Essentially numbing the area is a life saver for me, but I really try to do it sparingly.
  • Cotton gloves (tight fitting).  I really haven’t been needing these as of late, but a few weeks ago my hands were SO much more itchy that I swear it never stopped.  Lots of ice baths back then. My hands would be so raw I could barely move them and it was painful for anything, even air, to come in to contact with them.  That’s when the gloves would go on and I was so much more comfortable and able to do a few things (like hold a fork). The downside is that if you are oozing, the gloves will get wet and if you don’t change them out you will essentially adhere to the gloves and that is SO painful to rip off. Which just causes the area to ooze again anyway. Sometimes I would wrap my hands in tissue or gauze and then put on the gloves.
  • Moisturizer, or the lack thereof. I truly only use moisturizer on the areas I feel like I have to.  Those areas are my hands and my mouth.  I can not stand not being able to use my hands and watching them split open and bleed simply because I did something like, oh I don’t know, opened a drawer? Breathed? My hands just felt horrible any day I tried to go without moisturizer, and for me, it just wasn’t worth it.  My mouth was a similar issue because many days I could not open my mouth to eat.  I’m not going to lose weight because of this condition so icing and moisturizing my lips did the trick to “open the hinges” wide enough for me to eat. That being said, I try to only moisturize those two areas once a day (right after a shower).  I use all natural raw shea butter, though I’ve tried coconut oil, vaseline, Egyptian Magic, and many other things… shea butter is the most comfortable for me. I don’t use any moisturizer elsewhere simply because I can’t find anything that is comfortable (for face, neck, back etc.) and I’m sick of trying, and honestly I think I am more comfortable without it and letting my skin learn to make it’s own moisture.  There is some info on moisturizer withdrawal helping to speed up TSW recovery, so I might as well give it a go since everything is irritating in those areas anyway. I also gave up deodorant as well because my underarms are largely affected areas and everything I tried would sting.  I don’t smell and I don’t even notice a difference without it, haha.
  • Witch hazel. This has been like my cure-all for everything.  I have two kinds: the first one (#1) is the kind you can buy at any drugstore that has alcohol in it (usually 14%) and the rest witch hazel, and the second one (#2) is Thayer’s Alcohol Free Unscented Witch Hazel, which I found at Whole Foods. I use #1 for any areas that I want to “clean” because it has the alcohol in it to help kill bacteria.  I use it when I’ve scratched too hard on an area using my nails.  I basically use it to prevent any infection if I’m worried about it, though it’s also (sort of) helpful for drying up ooze.  Because it stings a tiny bit, it occasionally helps stop an itch in its tracks (like the mild kind of tickly itch).  I use #2 for anything else.  I mostly use it on my neck because it is non-drying but not truly moisturizing.  It just kind of help calms it down when its itching and gives it enough moisture so the dryness of my neck doesn’t cause further itching.  I guess it’s hard to explain, but it feels great on and is really soothing.
  • Zinc oxide cream. Essentially this is diaper rash cream, but I use this one hereIt’s basically like vaseline with zinc oxide in it, which you could very easily just make on your own by buying some zinc powder! The zinc helps dry up ooze, so sometimes I use this several times a day. Badger also makes a diaper rash cream (here) that has calendula and beeswax in it along with the zinc oxide and it is really nice on the skin.  I found it at Whole Foods but I don’t love the price tag so I don’t use it often.
  • Showers. Baths kind of gross me out but literally almost every TSW sufferer loves them. I prefer a daily shower, though I will be honest, I have a love/hate relationship with showers right now.  I feel SO GOOD when I’m in, but once I’m out my skin (particularly my back and sides and neck) just become so itchy and irritated.  I’ve tried hot, cold, tepid, warm, blah blah you name it any type of shower variation there possibly is, but at this moment the most comfortable thing for me to do is this: I take a hot shower (not scalding hot, but very, very warm) and I try to keep it short, and the last 2 minutes or so I spend gradually decreasing the heat (by 25%, 50%, 75%, then 0 so I am just standing in ice cold water).  This is what feels best.  The hot water really feels good and feels like it cleans off some of the dead skin (totally could be a placebo effect but it does feel great), and then the cold is soothing and calms the skin down and seals in moisture before I get out. My showers generally are not more than 10 minutes.  For soap I use Apply Valley Natural Soap.  I use the Calendula Castile bar for body + neck and the Simply Shea shampoo bar which I follow with either an apple cider vinegar rinse or VMV Hypoallergenics conditioner.  I would be lying if I said these soaps don’t sting my hands (when they are raw) but the truth is, everything stings my hands.  I even tried Dove sensitive soap and that still stung, so I’d rather sting knowing I am using an all natural, gentle nourishing soap with ingredients I can read. I don’t use anything on my face, it just can not handle anything at the moment, though nor do I think it really needs anything right now since I am not wearing makeup. Sometimes I don’t use any soap if my skin feels too irritated, I just relax in the water which makes me feel clean anyway.
  • Tea tree oil. Lately I’ve been seeing tiny pimples on some of my fingers and wrist… it is the strangest thing.  I use a Q tip with a dab of tea tree oil to help shrink them, which I apply after a shower and before moisturizer, once it dries a bit.  Tea tree oil is also hailed for keeping infection away.
  • Tight clothing. After exiting the shower and toweling off, I immediately put on a tight cotton shirt.  Many people have said how tight clothing helps them feel less itchy, and I am definitely in that group. I also use scarves to cover my neck only if I am going out in public so people don’t stare at me as if I have the plague. But really, its just about being as comfortable as possible and wearing whatever works for you!
  • Medication & supplements.  I really try to stay as close to nature as possible in all things, so generally I dislike taking any medication unless it is necessary.  Same goes for me in TSW.  That being said, on the nights where I can’t stand the itching, I will take some Benedryl (only the dye-free kind) and I also have a prescription for Atarax, but it only sometimes helps. I do partake in the supplement department, however.  I take a food-based vegan multivitamin (by Rainbow Light), 2-3g of Vital Choice fish oil daily (this is the BEST fish oil out there- it is certified unrefined, virgin, natural, and pure), and probiotics (the refrigerated kind). 
  • Tea. I have always been a lover of tea.  I don’t think there’s a kind out there that I tried and didn’t like! I drink chamomile and sleepytime tea for relaxing, even in the morning when my skin “wakes up” and feels like it might flare.  I also drink licorice root tea now and then, as licorice contains glycyrrhetinic acid, which has been found to increase cortisol levels by prolonging its half-life, thus preventing the breakdown of cortisol. I sometimes drink this at night when cortisol levels are known to be lower.
  • Nutrition. I generally follow a very healthful, whole food, close to nature diet of minimally processed foods regardless of TSW. I’m not saying I’m perfect, yes I do eat cereal, but I buy natural foods without heaps of preservatives and other crap. I avoid gluten and dairy, largely because I don’t really enjoy those foods anyway, but also because of the effects they can have on skin.  That being said, I have had a piece of bread and some cheese here and there when I am out and I do not notice a difference in my skin.  I make a green smoothie every other day and drink green juice on the other days.  However, with my appetite being off, sometimes its just about getting the calories in and not caring in what form.  Sometimes a bowl of pasta, or some waffles with almond butter, or a chocolate cookie (all gluten free, of course) are what I’m craving, so I go for it.  I don’t really care all that much because this is a time for healing, and you need nutrition to do so.
  • Miscellaneous
    • Some other random things that help me are gently rubbing an itchy area instead of scratching, or having someone rub my back to sooth it.
    • Sunlight is also excellent and does wonders for boosting my mood as well.  
    • Calming activities overall are helpful because I itch when I become stressed.  Walking, blogging, staying in touch with family and friends, and reading are all great for me both physically and emotionally.  I like to go to a local park (if I feel up to it and am not itchy) just to relax in the sun with a good book (though I do jump back and forth between sun and shade to stay comfortable, haha)
    • I also cover up my bathroom mirror because I am a picker, and when I look in the mirror I immediately see skin flakes that I want to pick off! But this always ends in an itchy fit and damage, so I’ve got to prevent it somehow.
    • I sleep with a silk pillowcase on my pillow which is nice for if my face oozes I don’t adhere to it in my sleep! Yay. I prop my head up on 3 pillows to prevent facial swelling/edema and to keep my neck from folding in on itself which creates and hot itchy war zone on my neck…. needless to say, attractive.
    • As far as makeup goes, I am putting absolutely nothing on my face at the moment because thats what feels good… just leaving it bare. On special occasions (like my birthday a few weeks ago) if I can tolerate some, I typically will use a bit of Tarte or Cover FX concealer on any super-red areas, fill in my missing eyebrows with brow powder (can’t wait for those to grow back!), and a swipe of mascara and call it a day. Maybe some shea butter or Aquaphor on the lips so they shine. But that would be enough for me, for the time being anyway.

And there you have it. My list of what keeps me going, for now. Things like this were so helpful for me in the beginning, and I couldn’t read enough about it, because I was so lost with how to help my own body. So I hope this is helpful for someone else and please, feel free to ask me any questions 🙂

12 weeks in… some changes and new developments

Today I am exactly 12 weeks into my steroid withdrawal, and am quickly approaching the 3 month mark! I have to say, I think the second month is one of the worst for a lot of people it seems, myself included. Many of the issues I have been dealing with are still present, some have subsided, and some are brand new. And I wanted to talk about those a little today.
The past week was an overall improvement for my face. I think I have finally come out of what was a terrible flare. So here’s a look at the past week (it’s crazy the difference in iPhone vs PhotoBooth photos… iPhone shows more redness and are the vertical photos, PhotoBooth ones look clearer and are horizontal):

Monday (7/28):
Photo on 2014-07-28 at 19.11 #2 Photo on 2014-07-28 at 19.11 #4

photo 3photo 5

Tuesday (7/29):
photo 1 photo 2 photo 3 photo 4

Wednesday (7/30):
photo 5 photo 1 photo 2Photo on 2014-07-30 at 17.23 #2Photo on 2014-07-30 at 17.23 #4Photo on 2014-07-30 at 17.23 #3

Thursday (7/31):
Photo on 2014-07-31 at 19.36 Photo on 2014-07-31 at 19.37 Photo on 2014-07-31 at 19.37 #3 Photo on 2014-07-31 at 19.37 #5

Friday (8/1):
After waking:
Photo on 2014-08-01 at 12.54  Photo on 2014-08-01 at 12.54 #2 Photo on 2014-08-01 at 12.54 #4 Photo on 2014-08-01 at 12.54 #5 Photo on 2014-08-01 at 12.55 #2Photo on 2014-08-01 at 12.55 #5 Photo on 2014-08-01 at 12.55 #3 Photo on 2014-08-01 at 12.55 #4

After showering (always when I am the most red and irritated/itchy):

photo 3 photo 2photo 1
Around 5PM, when my skin calms down a bit:
Photo on 2014-08-01 at 17.06 Photo on 2014-08-01 at 17.06 #2

Saturday (8/2):
Photo on 2014-08-02 at 19.02 Photo on 2014-08-02 at 19.03
Photo on 2014-08-02 at 19.02 #4 Photo on 2014-08-02 at 19.02 #5
Saturday I actually felt good enough to go out for a walk and run some errands.  Thank god for scarves to cover up my weird crusty neck. My face was clear, for the most part, just a good amount of redness.  I normally do not use any moisturizer on my face, but hey, it was Saturday and I was sick of the flakes, so I chose to put on a light layer of pure shea butter on my eyelids and around my eyes and mouth.  I had no issues with it and I don’t think it made my face any itchier than it normally is, and I liked how my face looked and felt smooth for once. The issue I am having now is with my lobster hands 😦
photo 5 photo 5_2

Sunday (8/3) – today:
photo 1 photo 2 Photo on 2014-08-03 at 15.32 Photo on 2014-08-03 at 15.33 #3 Photo on 2014-08-03 at 15.33 #4 Photo on 2014-08-03 at 15.33 #5
Hands:
Photo on 2014-08-03 at 15.34 #2 Photo on 2014-08-03 at 15.34 #5 Photo on 2014-08-03 at 15.34 #3

 

Recent changes in the last 1-2 weeks:

  • It seems that this past week my hands have overall been worse but my face has drastically improved. My face has been less swollen, less red, less oozy this week, but seems like there is more flaking. My hands, on the other hand (no pun intended.. haha), are kind of a mess. I was wearing cotton gloves almost every single day for the last 2 weeks, and it was getting kind of annoying because they didn’t stop me from itching and I would just ooze through them and then adhere to them anyway. Ouch. So I’ve tried to go this week without any gloves… it’s just painful sometimes because the skin is so raw!
  • Neck and face are overall less itchy.  I still wake up 3-4 times a night every 2-3 hours and find myself scratching at my neck or jawline, but it’s not that bone-deep life-take-over itch where I was ripping at my skin a couple weeks ago. Definitely no where near as bad! A week and a half ago I would sleep for an hour or so and then wake up ridiculously itchy and this would keep me up until 4, 5, 6, 7 AM… this has reduced but not gone away completely.
  • Mid-July I was noticing my hair seemed very dull, dry, and sparse… very brittle.  I did not notice any extra or “clumps” falling out while showering, which many TSW’ers complain of, but it just felt kind of dead.  This has been less so this past week and my hair seems somewhat closer to its normal self.  I began taking 2000mg fish oil daily 2 weeks ago; wonder if this may have had an impact?
  • Since the beginning of my withdrawal I was experiencing dry, peeling lips.  I literally could peel of inches of dead skin around my lips by the end of the day everyday.  I would open my mouth to eat something and the skin would just crack and split open, and I could just peel it off from there… so gross.  This greatly reduced this week… in fact I don’t recall it happening at all!
  • The rash covering my back and left side has spread like crazy.  This is an area I used both clobetasol and desoximetasone on several times from August 2013 – May 2014, but definitely no more than 10 occasions total. I had a rash that would continue to return on my back by my bra line, into my left armpit, down my left side, and across my lower back and even some spots on my bum, backs of knees, and legs.  They didn’t flare for the first month of TSW but they are in full force now! The areas are itchy particularly after a shower, but it is no where near as intense as the itch I experience on my hands and neck.
  • The rash/redness overall continues to spread. In the areas I’ve mentioned above, but also my hands- my wrists and in between fingers have spread, and now pretty much every finger is affected (it used to only be 4!) The neck rash has spread from ear to ear width-wise and moving down toward my chest, ending at my collarbones.  Both elbow creases are also fully flaring (steroids occasionally used here, but only once in a while)  They are like elephant skin and can be super itchy at times, and then of course ooze + crust up.
  • Left armpit area is almost completely covered and very red and occasionally oozes.  It also emits this strange smell throughout the day (and no, I don’t mean BO!) I’m not sure if it is ooze or what, but ONLY this one armpit smells this way! It is very weird and difficult to describe.  It’s also extremely sensitive after I itch it too hard and stings when water touches it 😦
  • Backs of my earlobes crust and ooze throughout the day. Odd.
  • It appears I am in the process of developing a “red sleeve” (a tell-tale sign of TSW) on my left arm. I have about 10 cm/4 inches of clear space between my elbow crease rash and wrist rash. It was difficult to get a photo of it because the pictures never do justice to how RED things actually are.
  • Appetite is slowly returning… somehow I had no issue polishing off my leftover birthday cake this week 😉
  • Overall, I am much less itchy throughout the day.  Don’t get me wrong, I still have crazy itch fests (particularly at night/early AM) but a few weeks ago I needed several ice baths a day to submerge my hands into for relief, and this week I’ve needed 0-2 per day! That’s totally an upgrade for me, and when it comes to TSW and any small upgrade… I’ll take it!

2.5 Months / 11 Weeks / 77 Days…. but who’s counting?

Wellp, it’s officially been a total of 77 days since stopping steroids…. not that I’m counting (of course I am!) I seem to have maybe, possibly turned a small corner with the progress of the skin on my face, or maybe I am just learning to better manage it.  Either way, the past 4 days have been decent.  Not quite good enough to walk around without huge sunglasses covering me up, but good enough to spend some time at the beach last Saturday which was my birthday.  It wasn’t a full out fun-in-the-sun beach day (no way am I ready for that!) but it was my birthday after all and my favorite place in the world is the beach. I go to the same beach every year on my birthday and I just love it no matter who joins me.  I have had some ups and downs in terms of my mood and feeling down this past week, and the thought of spending my birthday as just another day sitting at home itching was getting me pretty depressed.  I decided not to let it get the best of me, and planned on going out regardless.  I brought an umbrella to be mostly in the shade, a large sunhat and huge sunglasses to keep my anonymity, and plenty of ice and paper towels incase I need to stop an itch or some ooze in its tracks.  Maybe it was the pressure of being in public, or maybe I am really improving, but I was honestly perfectly fine.  I wasn’t itchy or uncomfortable at all.  I loved it! Following that was a delicious family dinner of baked shrimp, tons of veggies, and roasted potatoes, and a yellow coconut cake to boot – my favorite! It was so wonderful to spend the day with family and close friends and it turned out to be a fantastic day – I even got a great night’s sleep! Here is more on the last week in review (technically week 10):

Pictures from 7/20 (Sun):
Photo on 2014-07-20 at 23.08 Photo on 2014-07-20 at 23.08 #2 Photo on 2014-07-20 at 23.08 #4

Mostly just a lot of flakes/dried ooze.  Sleeping was still very difficult for me.

Pictures from 7/21 (M):
Photo on 2014-07-21 at 14.14 photo 2 (9) photo 4 (6) photo 3 (7) photo (10) photo 3 photo 4 photo 1

I looked absolutely horrible this day.  I can’t even recall why.  The strange thing was that I didn’t FEEL this awful.  I didn’t even think I LOOKED this awful until I started taking pictures.  These pictures were all within the same hour, just in different rooms with different lighting.  I don’t know if certain lighting made things look worse than they really were, but regardless, this is what I looked like.  A corpse.  It made me really sad that I looked like this at all, but looking back I am thankful I took so many pictures because nothing makes me feel BETTER than seeing progress later on!

Pictures from 7/22 (T):

Photo on 2014-07-22 at 02.28 Photo on 2014-07-22 at 02.30

This was an absolutely sleepless night (pics above from 2 AM) because I could NOT stop ripping at my neck. It wakes me up out of a dead sleep sometimes because it is so outrageously itchy.  Sometimes I am half asleep and I’m not even aware I am doing it.  Other times I am well aware but can do absolutely nothing to stop myself… my hands just have at it.  I try icing it but it just stings and doesn’t do much anyway.  It really hurts to look back at some of these pictures knowing I stayed up all night in pain, oozing away with two different towels slapped on my neck from the damage I caused.
The following pictures are from the same day, the only difference is they were taken after the above photos during hours where normal people are awake:
photo 5 photo 1 photo 2 photo 3

I find that laying out in the sun for as long as possible (and obviously avoiding burning) helps dry up the ooze immensely.  I’m not saying it’s completely dry in 5 minutes (gosh no- it literally can take all day!) but it certainly seems to dry faster than if I were indoors.  I keep a towel near by to mop up excess ooze that I can feel.  So gross.  I hated myself this day because even though my neck was already SO RAW from all the scratching the night before, I STILL managed to claw it up in an itching fit later that afternoon.  The last two photos are around 10 pm; I was raw, oozing, in pain, and absolutely miserable.  I struggle with self-loathing sometimes (which is something that is really new to me) because I feel like this is all my fault.  Scratching until I ooze and bleed and am in pain is MY fault.  Using steroids in the first place was MY fault.  Not paying attention to the risks of steroid use and becoming addicted was MY fault.  But when I calm down and think things over, I know I can’t blame myself 100%.  I am not stupid for trusting a doctor.  I can’t help the insane itching.  I can’t help these things, and I just need to accept the now and take things day by day and be grateful that I am someone who can heal and move on from this.

Pictures from 7/25 (F):
photo 4 photo 5

I’m not sure why there is a big jump from Tuesday-Friday and wish I had documented those days.  Regardless, I experienced tremendous healing compared with the previous pics. Thursday I looked and felt well enough to have a close friend visit, and I barely itched during the day! Maybe it was subconscious pressure not to itch because I had someone talking to me, or maybe I was just distracted since we talked for hours, or maybe I am slowly coming out of a flare 🙂

Pictures from 7/26 (Sat) – my birthday!:

photo 1 photo 3

Looking good if I do say so myself 🙂 My sister helped me with a teeny bit of makeup (light concealer for under-eye redness, filled in my MIA eyebrows, and a light coat of mascara!) It was the first time I put anything on my face in weeks, and it felt really great to look and feel like myself again 🙂 Today was a good skin day.  Very little itching again as well!

Pictures from 7/27 (Sun):
photo 4

Mostly just red all day and a tiny bit swollen with dry and flaky skin.  Luckily, no adverse reactions to the makeup from the night prior. I would say that my skin looked “worse” than the previous few days, but still an overall improvement compared with recent days past.  At this point, I had been given a prescription for Atarax.  It seemed to help me quite a bit with itching and improved my sleep as well.  I didn’t get a perfect solid night’s sleep, probably woke up 2-4 times, but the itching was so much less and I was able to fall right back asleep after! That is huge for me. The drawback is however the next day I am completely out of it.  I think I took it too late at night and maybe I just need to take it earlier so the effects don’t wear into the next day.  I fell asleep 3 different times the following day and just couldn’t shake off that foggy kind of feeling. I don’t plan on taking it every night, maybe every 2 or 3 nights or something, or saving it for when I think I might really need it, but it was certainly helpful the first time I used it.

I am curious to see what this week brings and if I continue to come out of this horrid flare or if I simply had a few days of clear-er skin only to revert back to where I was a week ago.  who knows.  I will say that overall in the last 4-5 days I have been less itchy, have had decreased oozing, and am overall less red.  Same goes for my hands.  My back and sides are still red and occasionally itchy, but they are more difficult to document and have more or less stayed the same since the beginning of TSW.  We shall see! Thanks for reading 🙂

Week 9

Hi everybody, not too much new here.   This week seems to be a repetition of last week.  Sunday (7/13) night I was looking somewhat decent, most of the crust had fallen off and I was mostly just red with minor (compared to usual) swelling.  I looked in the mirror and recognized myself for the first time in a long time, just imagining that I had a really bad sunburn. See for yourself-

photo 1 (4) photo 2 (3) photo 4 (3)

Come Monday, I woke up looking like a red blimp, but by the end of the day much of the swelling had gone down and I honestly thought I was looking like me again.  Just a crusty, flaky type of me.

photo 5 (1) Photo on 2014-07-14 at 12.00 Photo on 2014-07-14 at 12.00 #2 Photo on 2014-07-14 at 12.00 #3 Photo on 2014-07-14 at 17.34 Photo on 2014-07-14 at 17.34 #2 Photo on 2014-07-14 at 17.35 Photo on 2014-07-14 at 17.35 #2

I should have known it was too good to last, because come Tuesday, I oozed ALL DAY LONG! I don’t understand how someone can just ooze all over their face for hours on end! Why doesn’t it dry?! No matter what I put on it or how I mop it up, it’s wet again minutes later.  Fortunately, my sister came to visit me and treated me to lunch, which was really awesome to have some company- oozing or not.
Wednesday I finally dried up, and my face was just very red, crusty, and tight with a good amount of yellow dried ooze.  Most of this rinses off in the shower, however, so typically that is the very first thing I do after waking.

photo 1 (6) photo 2 (5) photo 3 (4) photo 4 (4) photo 5 (2) Photo on 2014-07-16 at 13.10 Photo on 2014-07-16 at 13.10 #2 Photo on 2014-07-16 at 13.10 #3 photo 2 (6) photo 3 (5) photo 1 (8)

By this time, I decided to come and stay with my parents for a while. It was getting pretty difficult to do several tasks at home like cooking, dishes, etc. It has been an amazing help to be with my family and have so much support around.  Even if my skin hasn’t improved one bit, it has done wonders for me mentally and my mood- it has been a lot easier to stay positive having help and care around from those who love you.
Pictures from 7/17:
photo 4 (5) photo 5 (3) photo 2 (7) photo 1 (9) Photo on 2014-07-17 at 18.51 Photo on 2014-07-17 at 18.51 #2 Photo on 2014-07-17 at 18.52 #2 Photo on 2014-07-17 at 18.52 #3

Pictures from 7/18:

photo 3 (6) photo 1 (10) photo 2 (8)

I’m still very red after a shower.  Does anyone else find this to happen as well??  I am still having a lot of trouble sleeping at night.  It seems that every few hours on the dot I wake up, sometimes itchy sometimes not.  Sometimes it’s horrible and I need to ice myself up and down.  Other times I still wake up but am able to make myself comfortable again and go back to sleep.  I have had some really terrible nights though where the itch will just NOT go away- particularly my left armpit and my neck- so terrible that I am on the floor crying and pleading for it to stop.  Benedryl sometimes helps and sometimes doesn’t.  I have had great night’s sleeps with and without it, so I’m not sure what it really depends on, I just try to take it sparingly so I don’t develop an immunity to it.  I read something recently on the ITSAN forum that has stuck with me to get through the sleeping issue.  It was something along the lines of: I sleep when I can and I stay awake when I can.  I don’t pay attention to the clock or force a schedule to that of the real world… because with TSW, we don’t live in the real world! We live in a body of horrific and healing skin, just trying to find some form of comfort every passing minute.  So don’t let sleep stress you out.  Keep in mind that, even if you can not fall asleep but can simply lay there and relax (i.e. not itch or stress), that you are still doing your body good and allowing it to heal just by laying quietly and relaxing. I hope that helps for those reading who have this issue 🙂

 

 

A review of TSW symptoms, courtesy of ITSAN

Greetings friends,

I’ve seen posts like this on other TSW blogs, and thought it would be helpful for myself to do one as well.  Below are the most common symptoms of steroid withdrawal, courtesy of the oh-so-helpful ITSAN website at http://www.itsan.org/resources/q-and-a/.  My personal comments to each one are in bold.  Here we go:

Q: What are the most common symptoms of Topical Steroid Withdrawal?

These symptoms occur after you stop using topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur, or may not occur at all. You may experience some of these symptoms throughout the entire time or you may only experience them during flares.

  • Red, burning skin: This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads. I definitely have red skin.  I wouldn’t say it “burns” but it does appear similar to a sunburn.  It does “burn” after I have a terrible itching fit, then it burns because of the pain I’ve caused itching too hard. I had redness exactly 1 week after stopping steroids, and it has continued to spread. While I don’t have the typical “red sleeve”, I have fingers that are totally red like mini red sleeves, and my entire right wrist is red as well. 
  • Unbelievable, extremely intense itching: Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. YES! Terrible itching! Itching that feels like it is coming from your BONES and you just can’t itch deep enough to relieve it! Itching that can undo a weeks’ worth of healing in minutes by scratching.
  • Shedding or flaking skin: Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off. Yep.  All day flake fest over here.  I could knit sweaters with the flakes that fall off my face.  Good idea for a Christmas gift? Yes no maybe?
  • Edema: Swollen skin or swollen body parts containing fluid. Hands often swell during TSW. I haven’t really noticed my hands swelling (yet), which is surprising because they’ve received the most steroid treatment out of errybody. However, most mornings I wake up with a squashed swollen lion face.  Sometimes I can barely see out of my eyes they’re so swollen.  It’s a sight to behold.
  • Oozing skin: Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried. Yes yes yes.  Ooze seeps out if I itch or irritate my skin too much, or if big flakes fall off that weren’t really ready to.  My neck, temple, and hands love to ooze.  I do have a few small blister-looking things on my hands that I assume are filled with fluid.  I often have hard crusties on my face…yay!
  • Itchy skin: The itch is unbelievably intense and feels like it originates under the skin. We’ve discussed this.  See above.
  • Raw, painful skin: It may feel like a bad sunburn and may be sensitive to even the lightest touch. Totally after an itchy fit.  The skin is raw and man it hurts… I don’t mean to, I just can’t stop the itch and I go too far and expose skin that was not quite ready to be out and about.
  • Eczema-like rashes spread from area of skin that was originally affected by eczema: You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin, even in areas where topical steroids were never used. The skin is one organ, so when one area is medicated, it can affect all of your skin. Yessir to all the above.  From my armpit to my hip, particularly my left side, is covered in an eczema-like rash. I have some hives on arms and wrists.  Several parts of my body seem very dry, like my neck and back. I have tiny cuts it areas that I’ve scratched too deep.  And I do have areas that have reacted that I did not ever use steroids on. 
  • Difficulty regulating body temperature: You may experience freezing hands, feet, or body and often get the chills; or you may feel very hot. I get this from time to time, but its nothing major.  I was out for walk recently and it was 80+ degrees outside and I kept shivering… it was pretty strange.  I’ve also been drinking hot tea like its nobody’s business even though its the middle of summer.
  • Exhaustion.  Fortunately no, not really.
  • Insomnia or difficulty maintaining a normal sleep schedule. For sure.  I wake up every 2 hours, on the DOT.  I wake up and itch like crazy.  Benedryl doesn’t even seem to help.  I get up, ice myself, try to relax, and eventually fall back asleep, only to wake up a few hours later.  I hate it.
  • Loss of appetite. Definitely.  My appetite sucks.  I’m sure part of it is being home from work now, so I’m not running around all day and am doing just the opposite, so I’m not burning as much energy.  But I don’t feel hungry for several hours after waking and normally I eat breakfast immediately after I wake up.  That’s out the window.  I also never eat lunch anymore and am lucky if I have a snack in between “breakfast” and dinner. I’ve got to work on this because I know my healing will certainly slow down if I don’t have the proper nutrition.  
  • Very, very dry skin that has the look and feel of plastic. This is hard to describe.  I want to say yes, I feel like my neck is like that, because I can barely move it from side to side and feels like I’m in a neck brace sometimes.  Its just full of dried crusty ooze and I’m so nervous to crack it because it will just ooze again.  Woof!

 And just incase you wanted to proof of crustiness, here are some pretty pictures from 7/10 and 7/11:

Photo on 2014-07-10 at 13.32 #3 Photo on 2014-07-10 at 13.33 Photo on 2014-07-10 at 13.33 #2 Photo on 2014-07-10 at 13.33 #3 Photo on 2014-07-10 at 13.34 Photo on 2014-07-10 at 13.35 #2Photo on 2014-07-11 at 10.10 Photo on 2014-07-11 at 10.11 Photo on 2014-07-11 at 10.11 #2

Flaky city!