2 Years, 24 Months, 733 Days off Protopic

2 Years! Wow. When you are in the beginning stages, you feel like this marker is so far away. Its finally and here and so worth all those tears and pain. I am doing so much better than those early stages. I hope I will never take for granted having nice skin again.

So how are things today? Well I have some slight skin issues, just a bit of normal eczema on my palms, neck/chest, inside of my lower arms, thighs, and lower legs. These spots are a bit eczematous but it hardly bothers me. I don’t really think much about it. I am still seeing a homoeopathic doctor and he believes that these spots are due to hormones. I am due to get my period this week, so we will see if these spots clear up in the next week or two.

I even started going to the gym again and working out with a personal trainer and can sweat like crazy with hardly any problems.

I sleep great. My itching is about a 1-2 out of 10 depending on the day. Even when I do scratch, it is a normal scratch. It is itchy, I scratch it, and then that’s it. I no longer have the hour long scratching sessions. No flaking, no oozing, no pain. My life is 100% back to normal. It feels great! I thank the Lord everyday for bringing me so far and healing me so much. It is truly a blessing from Him.

Do I think my TSW is over? I am not sure. You really never know with this beast. So for now I think I will just say lets wait and see how things play out over the next few months. But for those in the early stages take heart, you will not always be suffering.

If you have any questions, please ask. 🙂 Take care.

23 Months Withdrawal

Just a quick update, I am 23 months TSW, Protopic withdrawal.

My last flare lasted only a week or two. I went on vacation for three weeks and had an amazing time with hardly any skin troubles. In fact, I have a beautiful tan! My first tan in quite a few year! Currently I am really having no skin issues. My legs have finally almost healed with just a few tiny spots, but unfortunately I now have to wait for the scars to fade. Oh well, I wont complain about that.

See you next month!

22 Months Protopic Withdrawal

Okay, so 22 months. Well I am flaring up again a bit. It started a couple weeks ago. I noticed I was getting some occasional hives, which I haven’t had in a long time. I also had a couple of sleepless nights, but thankfully I have been sleeping great in the last week. In fact I have been rather tired the last week. Last weekend I noticed my neck staring to get the small flares on the sides of it again, which had been clear for a while. Then I started to get some eczema on the backs of my hands last week, just a few small spots, which today are almost gone already. My palms started flaring up again. No cracks, but some of the little blisters. My left inner arm started flaring a bit last week too. It’s a bit rashy and a bit itchy. Nothing too bad. The picture below makes it look better than it is.

My neck was red and angry looking yesterday. You can see the picture below. I only seem to scratch it through the night while I am sleeping, but it has been VERY hot here. It was 32 Celsius yesterday. I put some zinc on it last night and it’s a bit less red today, which you can see in the second picture (with the purple shirt on).

  

Oddly I have still been getting pimples and my forehead is a bit oily. My face has been relatively unaffected so far, except my eyes which have been dryer and a bit more leaky than normal.

Legs are still their same scabby selves. Nothing has changed there.

I leave on Saturday to go on a three week vacation in another province. It will be my first vacation since I started TSW. I have been planning this since January. I was doing so well, I am bummed that I am flaring, although I do realize that it’s not too bad. I just worry about if it will get worse. I will be staying with family who don’t even know I have gone through TSW, and I don’t want to have to answer questions about my skin.

I am just going to trust God, that He is in control, and pray it won’t get worse and this flare will be short lived.

19 Months

So 19 months off Protopic. I am happy to report that last flare only lasted maybe 3 weeks. It never got too bad. Below are some pictures from today.

Neck is still a little pink but the rash and itch are gone again.

Arms have a couple little spots that I have been scratching a bit but they are better too.

Palms, as you can see they are doing really well, but still a couple little tiny spots that are itchy. That circled area is where I am still getting a bit of the tiny blisters so it gets a bit itchy sometimes.

Overall though things are still chugging along. Legs are still the same. I am not sure why they take so long to heal.

I have now gone three days without needing my sleeping pill to sleep! Yipee. I have been slowly weaning off since December. It feels great to not need it. I started taking it about one month into my withdrawal and have not gone a night without it since so this feels amazing!

I have been trying to get sun. I sat outside a couple weeks ago when it was about +12 celcius for about 30 minutes and I got sun burned! That was not a fun night haha but it felt great to be in the sun and I really feel like it helped me out in the long run. It got snowy and cold again after that so I could not get outside much, but last week started to warm up again. +16 on Friday so I sat outside for 15 minutes and it felt so good. I am going to keep trying to get in the sun as much as possible.

I was worried that I was out of the blue getting eczema on the bottoms of my feet, which I have not had any of my entire withdrawal, but I am happy to say I think I was wrong. I am pretty sure my feet were really itchy one day because it had snowed and I stupidly wore holy shoes, and so my feet were wet for quite a while. Not my brightest moment. So my feet have been good since.

Well, not much else to report right now. I hope you are all doing well.

560 Days / 18.5 Months Protopic Withdrawal

Well I guess it was too good to be true? Lol I am flaring a bit. And I mean a bit. I hate to even post this cause really it is nothing compared to what I have experienced in the past but I want to keep everyone updated on what’s going on.

I kept hoping it would go away but it has been a week or so now. It is only my chest, lower arms, and a teensy bit my hands.

My hands are barley flaring. Only a couple tiny blisters, compared to the fact that I had none the last few months, but no cracks or anything.

Below are pictures of my neck and arm.

No ooze, very little pain on my chest. I can still turn my head good. It was burning a teensy bit this morning on my drive to work but it was very mild. I think some nerve pain, but again very mild, almost not noticeable. It is only a bit itchy at night, but I scratch for maybe 10 minutes and it is not the deep itch from before. I think I scratch it through the night while I am sleeping more though. It is hard to control that. Pretty sure it is because I get too hot.

Other than that though I feel great. Still sleeping great, a ton of energy. My skin still holds moisture completely fine. Plus I am also getting pimples. lol

I really hope it does not get worse. I am trying not to stress about it and just trust God. 🙂

18 Months Update

Technically I will not be 18 months until the 29th, but there is no February 29. Lol So I am updating today.

This is just a quick note to say that I am doing amazing. My last post I said I was worried that I was starting to flare because my eyes were goopy again, but that cleared up quickly after I got better from being sick with a cold. No issues since! 🙂 My eyes are back to normal. I really do not have much to say. Everything is still pretty much the same everywhere else. My legs continue to slooooowly heal. I hope I can wear shorts this summer!

One thing I have also noticed in the last couple months is how much energy I have again. I knew my energy was lacking during my first year or so of TSW but now that I am feeling great I really realize it. The first year of TSW, I never wanted to cook or clean or do anything. Basically I just wanted to sit on my couch and that was it. Now I am cooking again and I have a ton of energy to get my house cleaned. I can go go go. It feels great. I just feel normal despite having a few lingering issues, and I am hopeful that those will clear in time. 🙂

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. 

 

9 Months Protopic Withdrawal

Tomorrow is my 9 month anniversary.

Last night my neck flared up. No burning or anything. Just really itchy for about 15 minutes before bed. But I scratched really bad and even made my neck ooze. I then went to sleep but must have done more scratching in my sleep because my neck was really sore this morning and when I jumped in the shower, oh my sweet goodness that hurt! I have attached a picture. Basically its my neck, top of my chest, to the top and in between my breasts. The outsides of my breasts are weirdly not affected at all and have not been at all throughout this process. They are baby smooth. Cannot wait for the day my neck is baby smooth! You can see some of my normal skin colour creeping in there though! Exciting. 🙂

It is about 1:30 pm here now and my neck feels okay. Just a little tender to the touch and red. No oozing. It is shiny in the picture because there is cream on it. You can see my chin is a bit red too. It was also itchy.

The other thing is that we have finally had a few warm days here. I noticed while the rest of my body was okay, my neck hurt more when I was in the sun. I sooo badly want to get sun, as its supposed to be really good for us in the later stages, but I am so worried about making my neck worse. Anyone have any experience with this? I don’t have any burning or nerve pain. My neck is just red and itchy, but not nearly as itchy as it used to be. I guess I will just have to take it slowly.

Also attached is a picture of my leg. Still a bit scabby. I have some purple spots on my legs, where the scabs used to be and is still healing. I have a hard time not picking at my legs. Such a bad habit. I think that’s why they are taking so long to heal.

My ankles and feet are a bit red. They are a bit itchy sometimes too. I was putting Cetaphil cream on them and then Aquaphor on top of them to keep them moisturized. Well I am slowly starting to do moisturizer withdrawal to them. I just started this week no longer putting the Aquaphor on them, just the Cetaphil still. The skin there feels stronger already just doing that. I am trying this because I want to wear flip flops this year (I couldn’t last summer)! Anytime I try to not wear socks my feet get itchy. So I figure if I can toughen up the skin maybe I will be able to go without socks. So that is my current goal. I am easing into it.  🙂

Otherwise the rest of my body is still doing good and still the same as my last post. Hope you are all doing well!

Protopic Withdrawal

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.