I would have posted this yesterday, but I was home sick again. Darn flu. Think I finally kicked it though. I am posting this photo because I just want to be honest about my topical steroid/protopic withdrawal journey. The night after I posted that beautiful picture of my neck, I scratched the heck out of my neck that night. Woke up the next morning and it was all red and splotchy and sore. Thankfully I had cotton gloves on so I was mostly just rubbing the heck out of my neck.
Already though, within a couple hours of being up it was calming down and today it is looking much closer to the previous picture. So things are still very much up and down, but I seem to heal pretty quick from the minor damage that I have done. I am still very itchy, especially my neck. I actually saw my homeopathic doctor yesterday and he said that the itching would probably be one of the last things to go. He is very happy with how well I am healing though, as am I!
I also told him that I was loosing a lot of hair, and he thinks it could be something to do with my hormones and would like to get them checked out. If I did this test it would also check my thyroid, which I did actually check a couple months ago, via a blood test (and it was normal), but his is a saliva test, which he thinks is much more sensitive. So it would be better to tell me if something is not right and could be causing the hair loss. I know hair loss seems to be very common in topical steroid withdrawal, but it still scares the heck out of me! One kind person on the ITSAN forum said to have the thyroid checked, as hers turned out to be low causing many problems. So I am thinking I will probably go ahead and get this test done. Not only for that reason, but also to make sure everything else is going okay.
Another thing I wanted to talk about today was about a devotional I was reading the other night in my bible. Now I realize that not everyone believes the same thing and I fully respect that! But I do think this devotional I read speaks directly to those going through TSW. It was from the book of Exodus and was about Gods people who were wandering through desert, and how they were given just enough food from God each day to get by. How the Lord gives us just enough strength each day to get through that day. I did not realize it until last night but this really relates to TSW. We need to just take it one day at a time. We should not worry about how our skin will be tomorrow, or next week, or even next month. There is no point in stressing ourselves out more than we need! I know especially in my early TSW days I could not even imagine how my skin would be come January. I thought I would be in pain and miserable forever, but I have come so far and it has gone so fast! I know its hard not to think about how our skin will be tomorrow, or how long this darn flare will last, but there is nothing we can do to control it. So I think we just need to try to take it one day at a time and for me personally I try to trust that the Lord will give me enough strength to get through today. 🙂
I hope you are all doing well!
146 days of protopic and topical steroid withdrawal
I have to say I am pretty happy today with my skin condition. It is of course nowhere near healed but today is just a good skin day. In my last post I said I thought I was coming into a flare. Yep, I was. It thankfully only affected my arms. It lasted about a month, which is quite long, but it was not severe and quite livable. I tried to get a picture but it just doesn’t show up properly, but my arms were very dry, red, itchy, rashy, bumpy, flaky, and I even had some nerve pain, which I have not really had much of since early in my withdrawal. I also kept feeling like my arms were going to sleep randomly, even though I would not be in a position for them to be going to sleep. It seems to have finally cleared up, although it is still a little red and rashy, but much better.
This past Sunday I got sick with the flu. I was up all night and ended up sleeping all day Monday. Now my skin has not been flaking too much lately, but my face and neck has just felt rough. Monday I woke up and it was all flaky! I rubbed it off in the shower and the skin there is soooo soft. It is so nice. It is still kind of red and splotchy and it is still itchy, but it feels so good. My neck has been my worst spot for so long and was raw for a few months, so it is so nice to feel this smooth skin. Also my palms were looking more healed too and less red. I have no idea if being sick helped these spots along, but it is definitely weird that things got better after me being sick. I did not take anything for my flu either. Has anyone else found there TSW skin got better after being ill?
Some pictures today of my skin
My skin is moisturized here and you can see it it still splotchy but the skin is smooth! I do have some flaking today around my nose and lips though.
The redness has really gone down and my palms continue to heal. They are a bit shiny, as I have polysporin on them at the moment.
Happy New Year! I hope everyone had wonderful holidays! Mine were great and I got lots of much needed rest. It sucks to be back at work. Oh well. Well I am officially into my 5th month of TSW! I have definitely noticed some changes since my last post, good and bad…
- Good. No more oozing anywhere! For now at least. Lol My neck and leg were the worst for oozing. The skin on my neck is now much stronger and I can scratch it to my heart’s content without any oozing! And the oozing on my leg healed up too.
- Good. The swelling in my legs has gone down and stayed down. My legs look normal size again. And the redness has gone down too. They are still a bit pinky/light red but much lighter than they were!
- Good/Bad. My arm hair is growing back, however I am still losing my head hair. I did do a coconut oil mask one day, which is very greasy! Took me three shampoos to get it all out! But I do feel like it slowed down how much hair has been falling out. I am still losing a lot but it seems to be a bit less. I am going to try to do another mask again this weekend.
- Good. My neck is less sore! Way less sore than it had been. It does still give me some grief at night but I can turn my head much easier than I could! My face is less dry too so it is a bit easier to smile. 🙂
- Good. My flaking is waaaay down. I don’t even need to vacuum my bed every night anymore!
- Good/Bad. My hands are healing. The cracks at least. They are not deep anymore and the peeling is slowly healing I think. The bad is that the backs seemed to have flared up a bit again. The swelling and redness had gone down for a couple days but is back a bit now. Maybe it will be like my legs, they were swollen and then up and down and now just normal. Hopefully that’s what it is doing.
- Good. The redness in my face has gone down! A few people have commented on how much better I am looking. Its really nice not to look so sun burnt anymore!
- Bad. I have been getting weird sweat attacks. I got them twice in bed and once during the evening. I had to take off all my clothes and lie in bed to let the cool air dry me off. It was like there was this film of water on my skin and it was really only on one side of my body. I could not wipe it off. I got cold lying there but could not cover up because those spots would stay wet then. So I had to keep everything off it to let it dry off. My back and under my breasts have been sweating a bit too, so maybe it is just my body trying to regulate that.
- Bad. I think I might be entering a flare. I noticed about a week ago my arms were getting very dry again. They had been quite comfortable for a while now so it is disappointing. My wrist on my left hand has started cracking again too. It was somewhat normal for a few weeks before that. I thought maybe it was because I was forgetting to take my fish oil, so I started taking that again but they are still getting dry and flaky. I know if I am entering a flare there is nothing I can do but hope it won’t be as bad as my first flare. Only time will tell.
- Bad. I am still itchy all over. Especially my neck at night.
- Bad. I am getting hives now. Mostly on my neck, face, and arms after scratching too much. I will get a little hive which if I can stop scratching it, will only last maybe 15 minutes or so, but they are super itchy! I used to get hives a lot before quitting Protopic, but since going through TSW I have not gotten any until now. I hate hives. UGH.
- Bad. My skin on my neck and arms and feet feels rough. There is probably some dead skin that needs to come off but I can’t seem to get it off.
I do really want to get back to the gym now that I am into my 5th month. I put on some weight over Christmas so I need to lose that. I get itchy when I get too hot or sweaty though so I would have to take it easy. Hopefully I can get to the gym this month. I also need to get back to being stricter with my diet. I try to avoid gluten and yeast, but ate lots of it over the past few weeks. I need to cut back on my sugar intake too.
One more thing I am thinking about trying is getting some sun, either tanning beds or talking to my doctor about going to a UVB bed. Sun is supposed to be really good for our skin and here in Alberta we won’t be getting nice weather for a few more months so I would like to get a jump start on that. I will have to wait and see if I am entering another flare though. I probably will not want to do any of this if I am flaring again. The next couple weeks for me will be pretty busy as I am on dog-sitting/house-sitting duties for my parents while they are in Mexico. It is tough because I am watching four dogs all by myself and I have to go back in between my parent’s house and my house daily. I will be so glad when it’s over. Overall lots of changes, like I said good and bad. My skin definitely looks much better than it has been. I really hope if this is another flare it won’t be as bad as my first. It has been coming on very slowly.
My arm. Looks okay but it has been very dry and uncomfortable to bend.
Cracks on my palm are not deep any more, but my wrist is flaring up a bit.
Swelling is up and down on the back of my hand, as well as the redness.
No more oozing on my legs! The skin is healing and much less red. Not swollen either!
Looking so much better!