Sunday, January 27, 2013

Week 7: Small Wins

1.20.13 Day 43: Dry and flaky face/neck/arms. I spent all of the hot water in the shower this morning trying to scrape off dead skin. I needed to take an olive oil bath a few hours later to soothe the scratches I created during my shower. Lots of pain this morning on my stomach and back. The kind of pain that feels like hot pin pricks all over. My neighbors are probably concerned because I spent the half hour it took for the Ibuprofen to kick in yelling in frustration.

1.21.13 Day 44: Less Ibuprofen was needed today :) although my forearms felt raw and painful (someone on the ITSAN forum described the feeling as having a horrible sunburn then scraping gravel over it).
Yeah it wasn't so fun to go and talk to people at work that day

1.22.13 Day 45-1.25.13 Day 48: My arms changed from bright red and raw to light pink and dry these days. I have been spending a lot of shower time scraping off insane amounts of dry skin.

much better than a few days ago!

No longer raw! Just red for now


right arm dry and red

1.26.13 Day 49: my skin felt strong enough today to use a loofah in the shower! I am still scratching off tons of skin from my face/neck/chest each shower. I seem to be flaking dry skin with every move. I am constantly having dust off my shirt and have blow flakes off of my glasses that have fallen from my forehead. It is very attractive.

1.27.13 Day 50: Just feeling very dry today, otherwise I feel great. Celebrated 50 days steroid free with some pretty pink nails at my favorite salon.

Pink nails to match my pink (not red!) skin :)

It is amazing how drastically things can change from one day to the next with tsw. It is really hard to have a good attitude and stay optimistic about healing when you are at the peak of a flair. I don't know what I would do if I didn't have Ethan to celebrate the little wins with me (like my arms being one shade less red, or only having to take one ibuprofen instead of all day).

Song for the week: Dear Jack - Jack's Mannequin
" Dear Hope, attach it to the end of your rope. A rope that wove ambition in with sorrow, distancing tomorrow, tomorrow's come and past....Dear Jack, Wherever you are, hold tight. Wherever He is, shile light tight there. Be strong I dare. I know it's hard but I will wait. I will wait."

Monday, January 14, 2013

Week 6: My Own Personal Hell

This week's pictures will be posted as soon as I am back on my laptop and have the energy to update.

1.13.13 Day 36: Woke up feeling dry and tight on my face and shoulders (which means I will probably look nice and flaky by tomorrow). Arms have lightened up a lot but my hands are still pretty red and dry looking. At least they have moved out of the raw stage. Legs are pretty splotchy all over. Overall, feeling pretty good, I was even able to wear lip gloss!

1.14.13 Day 37: Itched ALL night long. Woke up with a very flaky dry face, but I was able to scratch most of it off in the shower. Face is a little red today, but not too bad. My arms and hands now look like the ITSAN logo (aka bright red "sleeves" and tops of hands with white palms). Overall, not too bad. Happy Birthday to Me!
Feeling good and watching a movie on the couch

1.15.13 Day 38: Not too much to report today.

1.16.13 Day 39: Up all night scratching. Had to call out sick to my internship because I was in so much pain that I couldn't get dressed. I stayed in bed and read/slept all day. I didn't even have to willpower to get out of bed to eat, so I just slept all day. I would say that this flair is much worse than the first one because this one is full body. All I can do is lay in bed, it hurts too much to move.

1.17.13 Day 40: I had to call out for both my internship and my paying job today because I couldn't get out of bed again. Not only am I in too much pain to do anything, I also just don't want to. I have zero willpower to do anything, reading and watching movies doesn't even interest me.

1.18.13 Day 41: Had to stay in bed instead of going to my internship AGAIN. Couldn't get out of bed much again. I've been eating like I am sick this week (very little and when I do it is not so healthy). I have also been having a new kind of oozing. This kind happens when I break the skin (which happens way too easily). The cut will ooze a ton and stick to my clothes/bandages.

1.19.13 Day 42: I was able to get out of bed and move around today, but still had to stick to sweatpants. I scraped dead skin off in the shower until I ran out of hot water. Ethan and I had some friends over for drinks and a card game. I felt great most of the time but started getting cold shakes really badly towards the end and had to go to bed while everyone was still there. Luckily, I have great friends that were very understanding.

Song of the Week: 
"If you're lost and alone, or you're sinking like a stone, carry on. May your past be the sound of your feet upon the ground, carry on....Cause we are, we are shining stars, we are invincible, we are who we are. On our darkest day, when we're miles away, Sun will come, we will find our way home" Fun- Carry On

Sunday, January 13, 2013

Week 5: A New Normal

I don't have a daily log for this week because I started my 40 hour a week unpaid internship, along with my regular 30 hour job. I'm hoping to take better notes next week now that I am used to my new crazy schedule. Here is what I remember: *I will add some pictures as soon as I am back on my laptop

1.6.13 Day 29: Last day of freedom before my 40 hr a week unpaid internship begins. Luckily the swelling in my face is gone and not very red. It is so weird how the symptoms can change so drastically each day.

1.7.13 Day 30: Hands and arms have flared up a LOT. They are currently in the bright red, burning hot stage.

1.8.13 Day 31: Went into work and after about 30 min became EXTREMELY itchy, like scratch until I am bloody itchy, all over my face and neck. Turns out the air freshener spraying above my desk was really bothering my skin. My boss was kind enough to take it down for me and after I washed my face and moisturized I was fine.

1.9.13 Day 32: Yesterday's itch attack was definitely because of the air freshener, because I was totally fine today. Having trouble straightening my arms while the crooks are so raw and healing

1.10.13 Day 33: So itchy at night again that I need to take ibuprofen for the hot tingle feeling all over my body. I am so thankful that I have my energy back since I am so busy now.
Left leg splotches
Right leg splotches

Right hand, lighting doesn't capture the redness well enough

1.11.13 Day 34: Face and neck were pretty flaky this morning but I was able to scratch most of it off in the shower.

1.12.13 Day 35: Arms are not as red as earlier in the week. Hands still look pretty red and raw. They remind me of what my shoulders looked like in the beginning.

Song I can relate to this week: 
"Oh, it's a picture of perfection. Ah, and the postcards gonna read 'F**k yeah we can live like this...we can live like this' But if you left it up to me every day would be a holiday from real. We'd waste our week beneath the sun. We'd lie and tell our friends it's so much fun out here." Jack's Mannequin - Holiday From Real

Week Four: One month down, somewhere between 5 and 35 to go!

12.30.12 Day 22: Week four I thought you would never come! Haven't really been able to smile while the cuts around my mouth are healing. Otherwise, feeling great and really trying to enjoy this downtime before the next flair.

12.31.12 Day 23: Taking advantage of feeling good by cleaning the apartment and running errands. Arms and hands are still pretty bad but nothing worse than bad eczema. I did have to take off my promise ring because the knuckle was too swollen.

Ready for Ethan to come home to take my back pictures again

1.1.13 Day 24: First day that I slept through the night and did not have to jump into the bath immediately after waking up!

1.2.13 Day 25: Feeling great and much more energized. Walked four miles to run errands and get some exercise in the beautiful Arizona winter.

1.3.13 Day 26: Feeling the same.

left wrist is a little broken out

Neck and chest look great compared to last week!

Skin is so thin that I gave myself a giant cut

Lighting is bad, but right hand is pretty broken out

1.4.13 Day 27: A bit of a swelling in one eye when I woke up. My pillowcase was also making my ears itchy. This is how it started last time around. Goodbye break, I was a pleasure knowing you.

Just a little swollen today

1.5.13 Day 28: MUCH more swelling in my eye this morning compared to yesterday. Face is also a bit swollen and starting to ooze. It doesn't really feel wet unless I scratch it, it looks more like tiny dried dots all over my face if you look closely. I started putting a silky robe over my pillowcase to help with my now very itchy and oozy ears.
Very Swollen!

Tuesday, January 1, 2013

Week Three: A Little Relief

12.24.12 Day 16 Still looking tomato red. Skin is hot to touch, you can even feel the heat through my shirt sleeves. Ears are oozing a lot, and have a rather unpleasant smell. 

My brother's unfortunately accurate Christmas cookie of me

12.26.12 Day 18 Woke up with little pimple-like bumps on my arms and a few on my legs.  Stomach has gone from little red dots to a full on rash. It is not too itchy but when I scratch it, it burns really bad. 

12.27.12 Day 19 The pimple-ish bumps were a one day thing apparently. Body temperature has been really off. I've been really cold with freezing feet, while sweating at the same time. The crooks of my arms are pretty raw and have cuts from scratching. They hurt to extend so I have been leaving them bent.

12.28.12 Day 20 Face/chest/neck are looking clear! The only red spots on my face are from picking the flakes before they were ready to come off. Stomach, crooks of arms, and wrists/hands are still very inflamed. Stomach and back are more pink than red. Thighs have the red dots now that my stomach used to have.

stomach has changed from red dots to a full rash

face/chest/neck are clearing up. Those darker red spots are cuts from scratching

Much less red
12.29.12 Day 21 Lots of flaking on my forehead and around my mouth, but looking better! It is crazy how different this condition can be from one day to the next. I am hoping this downtime lasts a while.