Forty days, no steroids! It seems like just the other day that I wrote the post for the 30 day mark, so that’s encouraging that time seems to be passing by adequately.
However, have you ever wanted to have a Fast-Forward button in Life? It’s so convenient how we can forward through things while watching a movie, and now we can even forward through commercials in TV. When are they going to invent the Fast-Forward button for our general existence? I can think of many instances in the past where I wanted to fast-forward through things. Sitting in a never-ending boring school lecture. During mile 20 of the marathon I ran, where I was convinced my knees were going to fall out and I still had to make it 6.2 miles to the finish. Fast-forwarding through the gloom and dark and cold of winter. And now I would like nothing better than to fast-forward however many months it’s going to take until my skin is HEALED.
But, I know why we can’t fast-forward through things (other than the reason that it’s damn near implausible). IT BUILDS CHARACTER! How would we ever truly appreciate the great and blissful things of life without experiencing the things that are not so great.
Here are some thoughts over the past week:
DAY 35. I had a moment where I foresaw I could get my old swagger back, where I could wear something like tight pants and high heels and men would look at me for the right reasons. My face seems to have a “skin curfew” where around 7 or 8 pm I start getting wildly itchy, no matter what. This is mentioned on the ITSAN site and seems to be due to a drop in cortisol levels. Now I know to be home around that time or I go insane trying not to scratch. Groin is very raw and itchy, even though I never used steroids there. Picture someone with a tattoo of angel wings coming up from their groin up onto the hipbones – that’s the exact same pattern of my rash there, it’s symmetrical and there is a border of ‘normal’ skin in the center. I think the reason for this, plus my very red neck, is because so many lymph nodes are concentrated there. I got kind of an itch attack in the afternoon at work after eating a few pieces of candy – maybe I was sensitive to sugar or the dyes. Often now though I say ‘screw it’ when it comes to what I eat, I’ve been obsessing over food for nearly the past 2 years trying to find a link between what I eat and my eczema. I am still avoiding dairy and nuts, but I don’t care about food anymore, I’m always hungry and always drinking water, this is literally recovering from an illness so I need to eat a lot so I can heal…. it doesn’t mean that I’m eating junk, though. I did have a big cup of K-cup coffee today – I felt like I had to because TSW is robbing me of sleep – I still want to avoid flavored coffee because I’m suspicious of the propylene glycol, but any effect that the coffee is having on my skin is either null or masked by this constant flare. Noticed tiny weird bumps on my palm and fingers – if I poke them, they ooze clear fluid, but they are not like blisters.
DAY 38. Today I really felt like I was making a tiny bit of progress. My eyelids did not feel so dry and tight today, and my neck felt fine, itch-wise. I was proud of myself because I felt very itchy in the afternoon before I went to walk on the treadmill, but I resisted and then I was able to distract myself! Then…. my damn ATM card got eaten by the machine, so I was on the phone with customer service for 20 minutes on hold and then trying to resolve this, and the chicken I had been looking forward to for dinner was extremely salty and rather gross. So the stress of all that made me really rip at my neck – now it feels oozy and not so good. My legs are still itchy but may be clearing up just a little. I have a little raw patch on one leg, and then my jeans stuck to it and fuzz got in the wound, ugh.
DAY 39. I hate how this topical steroid withdrawal seems to screw with my sleep patterns. I accidentally fell asleep in bed before I took my bath, and then my eye was really puffy. So then I took my bath around 2:30 AM, and I just laid in bed for hours in the dark and could not get to sleep… maybe I finally zonked out around 5 am. It’s terrible during the weekdays because I don’t get to sleep until near midnight, and I have to then wake up around 5. This morning I look like a tomato. Yes folks, you can find me in the produce aisle. I go well with my friends Bacon and Lettuce and make a delicious sandwich. Almost my entire face and neck is red, it’s really very alarming. The only regular colored patches are small areas around my nose/cheeks, and then my nose itself. I also noticed today I have a swollen lymph node in my armpit.
If you take a look at Rochelle’s blog, her neck rash looks a lot like mine. Another blogger (I think it was Louise) commented that our TSW patterns are a lot alike, based on the pictures.
I wonder if this means that my neck rash will continue to spread downwards over my chest and shoulders, like hers. At least I can hide those areas with clothing.