So shortly after writing my last post, my skin had a huge shed. My arms, back, chest, face, chin and neck all shed. Tons of skin came off. When my dad was here, he took my car to the car wash.. well that was a waste because it is now covered in skin again.
The deep, healing itch is back. It feels like my bones are itching. C got pretty upset this weekend because my itching was so bad and it is hard for her to watch me in a panicked state, tearing up my skin. I wish there was something I could do to stop it. But, if I had a way to stop it, TRUST ME, I would.
I am half way through my 9th month. This month is notorious for being a real bugger (can you tell I’ve been talking to more Brits lately! :)) Many people have a second wave of flares at this point. Given the past few weeks, I’d say that I fit the description. I have never really cleared up or stopped flaring, but these flares are very intense. They are not quite as bad as the beginning, but they still knock me down pretty hard. It seems like they only last 3-5 days, which is good. On the other side of each flare, my skin is better and better. But watching the smooth pink skin turn into red thick skin is devastating. I try to be as zen as possible and roll with the punches, but it is really really hard.
My scalp has also been giving me hell, which has been hard. It is constantly covered in thick, huge scales that come off in huge pieces and then ooze. I have to try SO hard not to pick at it or scratch because there will be flakes everywhere. I’ve been moisturizing my scalp twice a day with coconut oil and now I am soaking my head in diluted tea tree solution. Any other tips? And please don’t say “just leave it alone”! That is always the advice for these types of things, but like scratching, I can’t stop. My cheeks are still red with little oozy patches, but they are getting better and better with time.
Anyways, here are some pictures of my skin this morning:
I lied in my last post! I didn’t take flare pictures. Something about sitting still for pictures in a flare just really upsets me.
I started coming out of my flare on Thursday. I’m still a little pink, but doing a lot better. The itch is horrific though. I feel the deep healing itch and it sucks.
Ooze is down too. I had a huge back ooze this week which sucked, but I felt better after.
Anyways, things are slow and steady over here. Just truckin on.
Hang in there skin friends!
Hello world, Sorry I haven’t posted in a week. My parents were here and I was doing pretty well skin-wise. Well, last night, things got bad. Really bad. I woke up in a puddle of ooze. I am red red red all over my back, arms, chest and neck. Legs are great though!
I haven’t taken any flare pictures, but I will tonight.
I do want to share some pictures of me being out and about to show the newbies that although this thing sucks a lot, it does get better. At 8.25 months, I am able to live a relatively normal life. I’m still itchy and covered, but I’m not confined to my apartment or the bath.
Today is yet another milestone. Although every day and week is milestone and one step closer to being healed, each month marker is very special. It does seem like I am always flaring on my month-iversary.
Also, I want to thank everyone for reading, following and getting the word out. Today I reached 15,000 views, which is insane. My little blog is reaching so many people! Thank you thank you thank you! I’ve said since the beginning, as humiliating as it is to put this all out there, I have to make sure I keep as many people as possible from going through this, or at least stop their addiction as early as possible. I’ve been able to do both of those things and I am so grateful to all of you for that.
Anyways, here is the good stuff, my monthly skin update:
Until this last flare happened this weekend, I was doing great! My skin was no longer red, the thick lichenification was shedding off, and I was feeling better than I had in a long time. Itching had calmed down quite a bit. Nerve zingers had improved. I was doing so much better!
I flared. Again. And worse than I have in a while. And it is still persisting. Usually I have one or two days leading up to the peak, one bad day, and two days where it slowly burns out. It looks like this time I am not so lucky.
Back has been oozing like crazy. I’m a dull red again… pretty much all over. It does seem like it is burning out on my stomach and legs (my best areas). But my arms are still pretty flared up. It is interesting because they have not flared really bad in quite some time.
You can also see the swelling in my face and neck. Both have been oozing, but not as bad as in the past. I sort of wish all that fluid would just pour out. Who cares if it is uncomfortable and horrific for one day? Just get out already!!!!!
Here are the most recent pictures, taken this morning! I had a upper back ooze last night, so it is pretty irritated and sore. Oh, and there’s a picture of Shaggy. He stole a roll on the street today and wouldn’t let us take it from him. What a bad boy!