One Year Off Protopc and Topical Steroids 

(Note, My one year is actually tomorrow Aug 29, but posting today)

One year… What a year it has been. I wish I could say that I was doing much better, but I am still flaring. Although it is not as bad as July, so I do think it is on its way out, but that’s three months of this so called “anniversary” flare now. It was slow to build up speed and it is slow to go. If my first flare was a 10/10 on the horribleness scale, I would say this flare has been an 8/10. Still really bad and hard, but I have not had as severe symptoms. I am feeling better mentally, not so emotional this month compared to last. I feel like that is always a good sign when I can start being more positive. Usually the healing follows shortly, although it is super slow. I thought I would be so excited to get this far in, but it is so crummy to know that I still have sooo far to go to being healed.

It has been really discouraging lately, as I have seen lots of people now coming out and saying they are 2 or 3 years TSW and STILL flaring badly. I don’t even know what to think to that. I cannot imagine still going through this for that long. It kills me. I mean yes I am doing better than this time last year, but I have not had one day in the past year where I was at all clear. I have always had some itching or rash going on. UGH. I just want to live my life. I miss the simple things like cuddling with my boyfriend, or even just being able to turn my friggen neck!

So… What are my symptoms today? One year off Protopic? I guess I will just start at the head and work my way down as I have no clear skin really…

Eyes: Still a bit puffy, but not as bad as July. HUGE triple bags under eyes. Lots of flaking around eyes and eyebrows. I have lost a lot of my eyelashes and eyebrows. Still some yellow gunk coming out of my eyes, but they are not as glued shut in the mornings any more.

Ears: Dry, flaky, and a bit cracked. No oozing thank goodness.

Face: Very dry, itchy, RED, and very flaky. I constantly get asked if I am sunburned. My nose however is not affected and is usually white!

Neck: Red, dry, VERY ITCHY, flakes everyday! I have noticed this past week the skin on my neck is stronger. For the longest time I had all these little tears and cuts all over my neck, those are now gone and I can scratch my neck pretty hard without much damage. Only a little bit of oozing and not every day any more. I have probably about three scratch sessions on my neck a day. It is my itchiest spot. I still cannot turn my neck side to side at night. Too tight and painful. Also have had a swollen lymph node in my neck that comes and goes.

Chest/breast area: Red, dry, itchy, flaky.

Stomach: Just a band of dry, light red skin by my belly button. A bit itchy, but not too bad. This area was previously healed before this flare.

Arms: Inside of arms have the red sleeve. Very dry and flaky and itchy. The crooks of my arms have cuts and tears. I have to walk like a T-rex, as I cannot extend my arms at the moment. This area was also almost healed before this darn flare.

Hands: The back of my hands are dry and red. The blisters keep trying to grow on the backs of my fingers, but I pop them in the shower. I shouldn’t do that but I LOATHE this kind of eczema. My palms are red, itchy, blistered, cracked, and this week are oozy. Have not healed once yet in this journey. It is only in the centre of my palms though.

Back: Just my lower back above my bum and behind my shoulder are a bit itchy and flaky.

Legs: Inner thighs were healed, now they are flaky, red, and itchy again. Behind my knees is a bit flaky and a little itchy. Lower legs, the insides are very red with lots of scabby bits, which seem to take FOREVER to heal. The outside of my lower leg are only a bit red, with just a couple scabs.

Ankles/feet: Just the sides of my feet and ankle area are itchy with a bit of scabbing.

I have had about two days in the past two weeks where the itching was very minimal, almost non-existent. And I had about two days after a BIG flake fest, where my skin was very soft, but still itchy. I hope that’s a good sign. I have the chills again, but not as bad as the last time. Sleep is still not that great even with a sleeping pill. During the worst of this flare I could not sleep at all though. I am exhausted all the time and just have no energy to do anything.

So despite the fact that I am still doing crummy, I have come so far! One year without Protopic or steroids is a huge accomplishment. I hope this next year gives me lots of healing and that at my 2 year anniversary I can report things are much better.

Hope you all are doing okay. 

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348 Days Off Protopic – Need To Vent

Trying to stay positive… It seems impossible right now. This flare is still ongoing and has only gotten worse. Seems to have spread and I am even more dry and flaky. The tiny blisters which I only had on my palm are now trying to make themselves at home on the backs of my fingers again, like they did really early in my withdrawal.

I am tired of people asking if I am sun burned or those people who say nothing but stare at me like I can’t see. YES, I DO see you staring at my face. How rude some people are. I just want someone to hold my hand and tell me it’s going to be okay. That this flare will die down soon, but it has been 8 weeks of this, with the past month being the worst, and still no end in sight. I am constantly fighting down feelings of sadness and hopelessness. Will this EVER end?!?? I feel alone. My friends are all enjoying summer and I am hiding out like a hermit. Yesterday my mom had to come over and cut my grass, because I cannot stand to be out in the heat and with the mosquitoes. I am so thankful for her. She has been so supportive and always picking me up when I am down.

I wish I had something more positive or inspirational to say right now, but today I just need to vent, and let the cries of my heart out. I need some hope. I need some sign that I am healing. I cannot stop worrying about how much worse this will get.

I am clinging to this Bible verse right now, which I found randomly one night when pleading with God to help me..

“This is what The Lord, The God of your father David, says: I have heard your prayer and seen your tears; I will heal you.” 2 Kings 20:5