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.

arm

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).

neck 1  neck 2

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.
a

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

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.
c2

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.

14 Months Off Protopic

Not a whole lot of changes to report this month. Everything has been pretty much status quo. The flaking is very minimal. Last week my neck was feeling rough for a few days and then one morning I woke up to it being a bit flaky. I rubbed it off in the shower and it has been smooth since. Still dry, but barely flaky. Itching is minimal as well. I have maybe three or four episodes a day, but they are very short lasting, and I sometimes wonder if it just starts out of me habitually scratching my neck (still my itchiest spot). I will have to try to keep a closer eye on it. I used to scratch sooo much before bed, but now I go quite a few nights a week with barely any scratching in bed. It is sooo nice. I am still a bit red. It varies day to day, but I do think it is getting better. More pinky in color rather than bright red. My legs are still scabby. They seem to take forever to heal, but could be cause I have trouble not picking it. UGH. Bad habits I tell ya. Sleep has been decent. My hair has been falling out again a bit. I am not too worried about it yet, but hopefully it won’t last long.

One positive to report is that just this morning actually, I noticed on my right hand, that the skin splits, which had been open, split, and oozy for MONTHS, are closed up!!!!! The last two days I have been doing a strict no dairy diet, so I wonder if it is related to that? My last allergy test did show I was allergic to dairy and I have been eating basically whatever I wanted to for months, so I guess we will see. J It could just be a fluke though. So hard to tell.

It has been cooling down here now and the air is getting drier. I hope it won’t affect my skin too much.

Hope you are all doing okay. On to month 15!

13 Months Withdrawal

Well I can happily say that darn flare is OVER! YAH! My body is sloooowly healing now. Thankfully no more spreading or worsening symptoms though. Oh that was a horrible few months.

I have noticed that my neck and chest are finally flaking less. Still some but WAY less than it was. I just get a fine layer of flaky skin there overnight now. Compared to how it was the past year, a thick covering of dead skin, this is way better! And touch wood no oozing on my neck in a couple weeks. Of course every time I say I haven’t had oozing I end up having some lol so hopefully I won’t. My itching on my neck is also significantly decreased. I used to be sooo itchy every night before bed. Now I can usually go to bed with no or very minimal itching. I do sometimes wake up scratching my neck and chest though. Not sure if it is just I am too hot or what, but it is still not as bad as it was. My face and neck are still red, but I think it is calming down.

My eyes are less puffy, and leaking much less than they were. I don’t have to pry my eyes open in the morning. Still have a rash on my thighs and tummy but its not bad. My arms are healing. No more cuts on the crooks of my arms so I can stretch them again! No more walking like a T-rex. But they are still dry and flaky. Still have the red sleeve, but it think it is a bit lighter. My legs are healing as well. Much less scratch marks. Still red though. My feet are still itchy and a bit scabby.

Overall the dryness has improved. Although I am still dry, it is not as bad as it was. No more chills either!

So no dramatic healing yet, but I am doing much better than I was a month ago. I will take the slow healing any day over the flaring.

Keep going guys! We can do this!

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. 

 photo 1 photo 4 photo 2 photo 3