9 weeks off Protopic or 2 months done! However you want to put it. Haha I am entering my third month of TSW (topical steroid withdrawal)/Protopic withdrawal and at the moment things are okay. The last couple days I have not been as flaky on my body. I am still really dry, but the flakiness seems a bit better. My face has been pretty flaky the last few days though. Also I think my neck has healed a bit. I can scratch and although it does still weep, it does not weep as easily as it did a few weeks ago, and it just feels smoother, although it is still very tight by the end of the day. My boyfriend called me a robot one night because I couldn’t move my neck at all. Lol I have had two people tell me yesterday that I look better. I have to say that gave me a confidence boost even if I don’t feel it that much. My legs at the moment are very red and swollen. Lots of scratch marks on them, but behind the knees which have been very flaky the last few weeks are currently smooth. It could also be that I have been very careful to file my nails right down so I can’t do too much damage, but I just hope that it’s my body healing. I do realize that I can still flare again, I just hope if I do that it won’t be as bad as my first month. I think I would lose my mind. When I started this whole process I honestly thought I would be healed by three months! Lol I now realize how unrealistic that is. I am sure it will take me at least a year to be fully healed, possibly longer but I hope not! I don’t think my ears are weeping much this week either which is nice. That was really gross, having them stick to my pillow. Ugh. My arms are looking much better. I have lost a lot of hair on them though (which is fine by me ha!) but my hands have been crummy. There is a split on one of my palms that keeps trying to open up. It hurts! So I have to keep it moist all day long. I am still cold. I shiver all day long. That’s about six weeks of shivering pretty much all day, every day! I will be so glad when this part goes. I try to wear layers and drink lots of hot things. At home I just sit on the couch under a blanket all day/night. At work I have a big sweater and keep drinking hot chocolate or even just hot water.
Anyway I just want to thank God! I know He is healing me even though it is excruciatingly slow. I have pled to Him many times over the last few weeks to ‘just please heal me’ and to ‘heal me faster’. I do believe He just wants me to be patient and trust Him. This is a lesson to be learned. Take better care of my body for one! I only get one body in this life and it sucks to be so miserable in it! I have decided once I am healed to switch over to all natural creams and make up and shampoo. I won’t switch now as I haven’t been wearing much make up and don’t want my skin to react to anything. So I will wait till I’m more healed. I also believe He is teaching me to trust Him more! I keep saying I trust Him, but I actually have to trust He is healing me! I have to stop doubting Him. I TRUST YOU LORD, I DO!!!! I have to put my full faith in Him. I need to lean completely on Him! Going through this has made me realize how much I do truly need Him. I have been making an effort to read my Bible every day (although I forgot yesterday, oops.) and to spend time with him every day. He is an AMAZING God and deserves our COMPLETE devotion. He deserves all of me and that is all I can really give him even though it is not enough! I know I am truly blessed even though I am going through this and one day once I am healed I will be able to look back on it as just a trial and that He brought me through it and that it made me closer to God.
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!
Well, I am 40 days off Protopic. My skin definitely went downhill compared to last Monday when I had a nice break. Not sure if it is from the homeopathic medication, my period coming, or just flaring again. I have had oozing neck, ears, stomach, legs, and back. Last night I woke up through the night and tore my skin to pieces! I am all red today and have a ton of scratch marks. I also now have eczema on my toes. I feel colder today, which could be from my skin being worse or maybe because it is easier to keep warm at home over the weekend. My skin is very dry and flaky. I have to reapply cream to my face and neck several times through-out the day. I don’t really reapply it anywhere else but anytime I move my skin burns, so I try to just sit in one place. The elephant skin has gotten worse on my feet too and I still have it on my hands and also my thighs now. My eyes are still very dry and constantly have yellow gunk in them. I have to put eye drops in first thing in the morning and pick the crust off around my eyes. I have also noticed my eye color has darkened a bit and the white part of my eye is a bit yellow. I have edema in my legs and feet pretty bad and get it in my hands too. I need to remember to drink more water! I have been very emotional. I think I am getting some anxiety about having to work two jobs. I can mostly get through my full-time day job, even though some days I am rather distracted, but the thought of then having to go to my part-time second job has really been upsetting me and bringing me to tears every time I have to go there. I can’t quit this job though, as much as I want to. I have too much debt that I am trying to pay off (and not doing very good at it) so I have to keep it for now. One thing that this whole mess has taught me is that I must get my debt paid off quickly. I do not want to have to work two jobs. It is just too hard on my body. Anyhow today I’m feeling okay though, despite my worsening condition, but my moods change hour to hour, so in a couple hours I could be in tears about my skin again. Also I notice if I don’t get enough sleep I am way more emotional too. Since my skin is so bad today I am determined not to pick or scratch. I will take Benadryl all day if I have too. I am worried about getting infections, so I just want it to heal. I am also thinking of pick up some Epsom’s salts but that means I have to clean the bathtub! Haha I hate doing that but it must be done. I am still exhausted and even now am almost falling asleep in my chair (its noon). I have been taking one Zopiclone to sleep and then two Benadryl’s and two Ibuprofen’s to help me sleep and concur the itchiness and skin sparklers. Seems to work for now but I am almost out of Zopiclone and I will have to go back to the doctor to get more, which I am dreading.
Just for anyone wondering what I am using on my skin right now, for cream I use Cetaphil cream (in the tub) and then Vaseline on top of that. It only lasts a few hours. The Cetaphil does sting me a bit though, so I would maybe like to try something else but im kinda afraid to. I am also using Zinc Oxide cream on my hands and toes for the tiny blisters.
Well the weekend was good. I generally felt like all the rest I got had a good effect on my body. Seemed like I was improving. Skin was less dry. Down to two showers a day and yesterday, Monday, I only had to reapply moisturizer once. Although last night I did scratch my neck and it got super itchy and then started weeping(oozing) and continued to do so for most of the night. Today my face feels drier. It’s now about 1 pm and I feel like I need to apply cream again soon. Also my constant shivering and being cold had died down yesterday, but today it seems to be back slightly. Friday I went and saw a homeopathic doctor. He started me on some homeopathic medicine which I just started yesterday. He did tell me that it could get worse before it gets better. I need to just get through the short term pain for the long term gain is what he told me. Yesterday I was feeling really positive with my skin being less dry, but alas today with it being dryer I am feel down again. My emotions seem to be all over the place since I started this journey. I just don’t want it to get bad again. I know I am better than when I first started but I was so encouraged by my skin getting better these last few days. I don’t know how I will handle it going downhill again. I wish I could quit both my jobs. It is so hard to focus on anything but my skin these days. I’m falling behind, but part of me doesn’t care. I am just so focused on my skin nothing else really seems to matter. I know there will be up and down days and maybe today is just a down day. I have to remind myself to trust God. He led me down this path and is with me. Please Lord give me strength to get through this journey and through today.