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 🙂

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