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!
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