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

322 Days of Protopic Withdrawal – Still Flaring…

Almost 11 months off Protopic.

Funny…. Yesterday I was going to post an update on how I thought this flare was on its way out, but then on my way to my second job I had an itch fest on my neck, and then another one after work that resulted in quite a bit of oozing, and then another one after my shower before bed that lasted almost an hour and was just so hard to stop myself. How frustrating. It is mentally draining. I am so ready for this rollercoaster to be over. I want normal skin. I don’t want to be flaky, itchy, red, or in pain any more. 😦 I completely understand how the vets say some of the later flares are harder mentally. This flare has not been nearly as bad as my first one, but it is just so hard when you see yourself healing and doing well and then you slowly start going backwards. My hands are worse, I am back to wearing my cotton gloves all day again. My neck is still bright red, constantly flaky, itchy, and a bit oozy. Today my face is red and feels sunburned although I have not been in the sun. And I am just exhausted from this darn insomnia.

I did try the sun a few days last week, just 10 minutes at a time, but I think I need to wait till this flare dies down. I do think this flare is getting better, although it’s hard to tell after last night, but my eyes have stopped constantly leaking. They are only leaky a couple times a day now rather than all day. I hope this is a sign that my flare is dying out.

I am off on vacation next week for two weeks! I am so excited. I need the rest and I am hoping it will help my body to do some massive healing.. please, please, please!

Just have to keep saying this mantra “We will heal. We will heal. We will heal.” I have to keep reminding myself, especially through this last flare. I trust God to heal me! He is healing me! 

309 Days Protopic Withdrawal – Another Flare…

I am just a few days into my 10th month and I think I must be flaring again. It has been this way for about a week or two now, but I was not really sure what was going on since it nothing near as bad as my first flare, but definitely worse than I had been. The symptoms are very manageable, but here they are…

-Constant leaky watery eyes

-Occasionally puffier eyes

-Dyer skin on my face

-Trouble sleeping again

-Hands have more blisters on them

-Neck is more flaky and oozes a bit when scratched too much. Having to vacuum the bed again each morning only because my neck is flaking so much each night. No other body part is really flaking that much.

-Neck is more sore at night, so back to taking Ibuprofen to help with the pain. (I didn’t need to take it for a few months)

Yesterday was HOT. After work I thought I would treat myself and my boyfriend and get us some ice cream from Dairy Queen. So I got us some blizzards. Ate it around 9:45 pm and by 10:15 I was starting to get itchy. I tore open the skin on my left arm crook a bit and then scratched my neck like crazy. It was that awful feeling that I could not stop scratching. I gobbled down some Benadryl and hopped in the shower. That helped ease the scratching and I felt better when I got out, but it soon started up again. I had trouble sleeping, as I have been for the last few weeks.

I initially thought my scratch fest last night was maybe an allergic reaction to the ice cream. I have been lactose intolerant in the past. But it could also be just part of this flare. Who knows…

Anyway’s that’s about it. This flare is not too bad. I suppose it could be called a mini flare? But it’s definitely annoying. Its been going on a week or two now, so hopefully it will clear up soon. Maybe this is my year flare? From what I have read people get them anywhere from 10-13 months. Ha! Hopeful wishing right. 😉

I just wanted to add a bit of happy news. I popped back to ITSAN yesterday and lo and behold a member who is also withdrawing mainly from Protopic had added an update. She was the one who made realize I was really going through withdrawal from the Protopic. Anyhow, she is now 2 years along and says she is about 90-95% healed! How wonderful! That definitely gave me a lift! I cannot wait to be there!

Hope you all are doing okay! Keep telling yourselves we will heal!

300 Days of Protopic Withdrawal

Day 300. Next week will be 10 months of TSW.

My neck and chest has been flaking up like crazy again every night the past couple weeks. I have actually had to get up through the night and empty my shirt out in the bathroom from all the flakes, and I can peel big strips of skin off lol. It is still red and flaky, with some small splits/cuts on it from scratching too much. And if I scratch too much it oozes a bit. By nighttime it is usually pretty sore still. BUT I should add it is still not nearly as bad as it was my first couple months. Yes it is annoying and a bit painful but nothing compared to how it was. I can get through all day with no problems. It is just at nighttime that it become itchy and then flakes through the night. I really haven’t had a whole lot of flaking since probably January; at least not this much. I mean I have to vacuum my bed in the morning again which I had not done in a few months, but again it is still nothing compared to how it was. And it is only my neck and the top of my chest affected. I am hoping that once this flaking slows down again I will get some more healing.

The good news is that in the past month my legs have FINALLY started to heal again. The scabs are disappearing!!!! I even wore capris out Sunday! I still have a few scabby areas and my legs are a bit red, but they are looking better! Let’s hope this means I am out of that darn stagnant phase.

My hands are still struggling. Still getting those darn tiny blisters and have splitting on my palms. But when I think about it, my wrists, fingers, and the back of my hands used to be affected too and now it is only my palms! Trying to see the positives. 🙂

Otherwise the rest of my skin is doing pretty good. The insides of my arms look a bit bumpy/splotchy but they don’t bother me. My thighs have been a bit itchy, but I am still not putting cream on them and they are fine. My stomach and back are completely fine. Ankles are a bit itchy but again not too bothersome. Ears don’t bother me at all anymore.

Now to some interesting news. A couple of weeks ago I finally did that saliva hormone test that I had been talking about doing earlier this year. I just got the results back last week. It interestingly showed that my cortisol levels are below normal throughout the whole day, becoming less and less as the day goes on. Makes sense for what were going through since the body has to relearn how to make it again on its own. So my homeopathic doctor has decided to try me on some new things to try to get all my hormones at normal levels. He basically told me I was on my way to being hypothyroid. Probably a problem lots of us going through TSW experience. So he put me on an adrenal supplement and thyroid supplement. Both completely natural. All it does is try to get them working again on their own. We will see if it helps or not. I just started them yesterday. He thinks it will help my energy levels too since I am always exhausted.

I cannot believe I will be a year soon! I have to be honest. I am a little scared to come up to my year mark. I have been reading about lots of people lately who flare up badly around that mark. I guess only time will tell. I will be praying hard that I won’t!

8 Months and 2 weeks, 260 days of Protopic Withdrawal

Sorry for the delay in updating! I am already two weeks into my eight month! Crazy crazy. Cant believe it has been that long since I used Protopic. Time is flying by. I am still enjoying my break from ITSAN. Honestly it has been nice. I needed it. I am enjoying my life right now, which has been very busy. I am on day 10 of working 14 days in a row, and not only have I been working all day, this week I have been busy every night. So I am pretty tired. I have been reading people blogs though. 🙂

So, my skin is still very stagnant. The same spots are still mildly flaring. My lower legs, ankles, palms, neck, and the inside of my arms.

I came to realize last week that my thigh area (basically knees up) were completely healed. No flaring there at all and the skin is soft and supple, so I stopped putting cream on it. So far it’s the only spot I am not using cream, but it feels so liberating! Lol I think it’s a sign of things to come with the rest of my body. 🙂

Also I should mention my hair stopped falling out at the end of March. So it lasted about 4 months! I lost 2/3 of my hair, which thankfully was thick before so you could not tell. Now I am just waiting for it to grow back.

My lower legs are still in the scabby stage and its only on the inside portion of my legs. It seems to take forever to heal. They occasionally get itchy, but nothing too bad and it does not last long.

My hands are still a bit cracked with the tiny blisters. Its frustrating.

My neck is still red and blotchy. The skin has been flaking up a bit at night the last month, which it hadn’t done that in a while. It feels rough to the touch and is still my itchiest spot. But to be fair the itchiness has gone waaaay down. I used to scratch for up to an hour and a half at my worst, now it is lasting 15-30 mins at most, sometimes even less. If I scratch too much I may have a tiny bit of oozing, but nothing serious and its only usually one spot and dries up in a few minutes.

The inside of my arms are actually not too bad right now. Just a bit itchy. A little red on the crooks of my arms. Again nothing too serious.

That’s about it. Everywhere else is doing pretty good. Just frustratingly stagnant. Wish I had better news, but I am sure it will come soon. I am doing well however!

Stagnant

180 days into my withdrawal from Protopic. Almost into my 7^th month. I have not been posting much lately because things are just pretty stagnant. My last flare lasted a week or two. It was nothing too bad, just annoying really. Since then my skin just goes up and down. I am still dry and itchy, a little bit flaky. My neck still hurts a bit at night. I get hives. My hair is still falling out. My face must be a bit red again because I got asked the other day if I had been in the sun. Nope, it’s -25 here today! No sun for me. Hopefully it will start warming up soon. I feel like I need to get sun for my skin to keep healing. I need to get back to the gym to, but im just so tired all the time. I have no energy so it is hard to convince myself to go to the gym.  I think right now my worst spots are the insides of my lower legs, my ankles, my hands, the insides of my arms, and my neck and chest. So basically the same spots for the last couple months. Everywhere else is pretty eczema free, just a bit dry.

I hope I start seeing more healing soon. I start to wonder if my skin will always be this way, but I know it wont. I just have to be patient. This is a long journey I am on. I cant wait to feel normal again.

100 Days – Protopic Withdrawal

Wahoo!!! I am into the triple digits! Haha And officially done my third month and into my fourth! I can’t believe how fast it is going. When I first started down this road it seemed to drag. September was my worst month thus far. It was so hard to picture coming this far. However I do still have a long way to go to being healed. I have seen some improvements. Like the edema in my legs and feet going down. It does come back occasionally but it is much better than it was. The redness on my legs is also going down a bit. My eyes have far less goop. Even my ears seem to crack and weep less often. I feel less cold, although still cold most of them time, I am not constantly shivering anymore, which is nice considering its -25 here in Alberta! And just overall I FEEL better. I can’t put my finger on why exactly but I just feel better than I have been. The other night I even contemplated not taking my nightly shower because the only place I really felt like I needed more moisture was on my face and neck. I did decide to do it anyways because I was flaky on my neck but it was a good feeling to know that I probably could have gone with only one shower a day. I will see how I feel over the next few days and maybe I can get it down to one shower a day. That would be awesome. I have been showering twice a day for over a year now, even before I started TSW because I was still so dry all the time. So that would feel amazing to only shower once a day. Haha It truly is the little things.

My neck and face are still really dry and sore. I would say my face, neck, and hands are my worst spots right now. On the weekend my skin on my face and neck was actually peeling off like plastic or snake skin. It was rather weird. The other night I woke up to my neck oozing and this morning I kept getting hives on my chest so I still have a long way to go to those areas being healed. As for my hands, well I thought they were getting better, but my palms are covered in tiny blisters. UGH. I find it rather distressing to get eczema on my hands like that. I have to keep them moist because I have cracks there and it makes it really hard to use my hands. So I keep coating my palms in polysporin and wearing cotton gloves on them. I am going to try putting some coconut oil on them though. Putting cream on them just makes them itchy so I try to avoid that. Hopefully this gets better soon.  I have also been having a really hard time sleeping. I find as soon as I lie down, my face and neck gets itchy and I start rubbing it and cant sleep. So I end up getting up for a while to read until I am sleepy. But I am working two jobs, so not getting to bed until 330 is not okay! Hopefully I can get a handle on this soon. I am exhausted and actually had to call in sick to work on Monday. I ended up having a really nice relaxing day just watching TV and sleeping on and off all day. I needed that!

I saw my homeopathic doctor last week and he seems to think my healing is going in the right direction and I agree. I don’t know for sure if the stuff he has me on is helping or if it is just time but I like to think it is. Lol.

Looking ahead I hope I keep going in a healing direction, but I have to be aware that I could have my second flare coming up. Hopefully it won’t be any worse than what I have been dealing with, but who knows. I trust God to get me through it.

I hope everyone reading this is doing well. For those of you who are new to TSW my advice is just to hang on and find something to focus on and just know that it WILL get better and you WILL heal. I still have to remind myself this daily but I know the first few months are so hard. What gets me through the hard days is my faith in God. I trust Him that He is healing me. Even if you don’t have the same beliefs I would say just try to find something that you can focus on, to pull you through those hard days. Like your family or even just knowing that we will one day be HEALED and have beautiful skin again!!

10 weeks – 76 days off Protopic

Well I am into my third month. I will start with the positive; the swelling finally went down in my legs and ankles! Yay! My legs now have started to ooze very easily in some spots though. They are also still red but the redness does seem to be broken up with some normal looking colour skin. And there is lots of flaking going on in the spots where it is oozing. The skin also feels softer. So hopefully this is all signs of healing! The negative, if you can call it that, is that nothing else much has changed. My skin still cycles through being very flaky to just being very dry. I had a few days off from work because of my birthday and woke up last Friday thinking I was getting worse because I was sooo flaky. It was crazy how much I had to scrub off in the shower. But by Saturday I was much less flaky, just very dry. My neck is still my worst spot. By the end of the day I am in significant pain because of it and can barley turn my head. It does still ooze a bit if I scratch too much but it does seem like the skin is getting stronger. My hands seems like they are healing. There is less blisters and it is very flaky. I am trying to just keep a glove on my worst hand, as it seems to help keep it from splitting open. I still have all my other symptoms. I am cold and tired. A couple weeks and I will be into the triple digits of Protopic withdrawal. I am hoping I will start to see some significant healing soon. It was rather depressing waking up on my 28th birthday feeling this way. Next year’s birthday will be better though. I just have to keep toughing it out. I am just weary of this trial. I am tired of having to take two showers a day and constantly applying moisturiser. I am tired of being so flaky and dry. I am tired of being in pain. I am tired of not sleeping. I just need strength Lord to keep going. I don’t have any other options anyways. I can’t go back to TS or Protopic. So I just have to keeping going down this path.

 

Now, if you are reading this and have eczema that seems to just be getting worse even while using topical steroids, please check out this website. http://www.itsan.org/ Your “eczema” could just be steroid induced and can be CURED, yes CURED! This is the road that I am on. I also find lots of comfort from the Forum. It is nice to know there are other people out there feeling exactly the same way.

Oct 22 – 55 Days off Protopic

Well, things are pretty much the same. I don’t think I am any better, but also no worse. I have a bad crack on my palm which I have to keep moist or it hurts, it’s trying to split open. I thought my neck was getting better. It does seem to be oozing less, and it did seem less dry last week, but then yesterday was painfully dry again. The last few nights my ears have been oozing through the night. Not sure if I am scratching them or what, but then they end up sticking to my pillow. It is gross. One thing that is better is the skin sparklers or pins and needle feeling that I was getting in September. I have not gotten too much of it this month. Hopefully it will stay like that. I am still really cold. I have been shivering every day for the past month. It’s crazy! I will be happy when this part goes. The itching is still about the same and I still have edema in my legs and feet. I still cannot sleep without taking something and even then sometimes they do not work, which was the case Sunday night, so I ended up staying home yesterday. I must have scratched my face and neck a bit through the night too because they hurt too much to put under the water in the shower. So right away it was like nope, work is not happening today. Lol I am still working with the homeopath. He switched a few things when I saw him last week. So I am now taking a few new things. He said it could make things a bit worse again for a bit. We will see how it goes. I do know when I look back at September that I am much better than I was, even though I still have a long way to go. My eyes were flaring a bit last week, but seem to be better again. Just the usual gunk coming out of them. I am still very red in the face, hands, and legs. People ask me if I am okay. Lol I just try to give them the shortest response I can. Skin is still very dry and flaky. I have to vacuum my bed each day and after I shake out my pjs in the bathroom, sweep up quite a pile of skin. My skin also still smells weird. I cannot put my finger on what it is, but I know other people going through this report the same thing. My mood is really good though. I spend most of my days happy even though I’m going through this. Thank goodness that depression is gone. I do get the occasional moment of sadness but it usually doesn’t last long. So all in all, things are the same. I hope things start improving soon though. I cannot wait to be rid of this eczema!

Protopic the Horrible

After doing much reading online today, on the ITSAN and elsewhere on the internet, I have decided to try giving up Protopic to see if that could be cause of my never ending eczema. I have eczema head to toe and currently even small blisters on my hand. Something is not right in my body. I have used it approximately since summer 2009, so that is now about 4 years. I used it this morning so my first day off it will have to be tomorrow. Hopefully this is the answer to my many prayers to Lord about healing my body. If I am right, this could bring on a full fledge withdrawal called Red Skin Syndrome or RSS. I believe I went through something similar last year when I went off my birth control for three months. It was hell and I should have stayed off the BC but did not know at the time what was going on and so went back on and my skin got better. At the time I had severe dry skin, itching, weeping, severe insomnia, and constipation. Tomorrow is day 1!