First day of Month #2! 1 month is officially under my belt and it feels good to have made it this far. Even though I am still in the early stages I am proud of myself for not giving up because believe me there were many times that I thought I couldn’t continue. But with a pep talk from my boyfriend, myself, or the realization that I have no other option I got this far.
Well, today isn’t my worst day! It’s not my best day but I am feeling better than yesterday. Although I don’t think it is possible to feel worse than yesterday. But I am sure TSW will prove me wrong about that as it always seems to show me that I can handle more than I ever thought I could. My face is still very dry and flaky but it is less swollen and there are some bits of my face that are actual skin rather than flakes or ooze. Before I either had shedding skin or under the shedding skin was oozing skin. Now (mostly around my mouth) I have actual skin showing through. The best thing that I have done for my face in this time is limit my washing it, not using moisturizer, and leaving it be. As much as I wanted to pick all the flaky skin off, and I must admit there were times I did pick) but leaving it be was the best because now the skin is shedding as it is ready to come off which limits the oozing and is much more pleasant. There are marks or ooze or scabs where I did pick the skin before it was ready so I have learned my lesson! It is nice having tiny bits of my face showing through.
I started all my supplements about 3 days ago I believe so not sure if that has helped my skin or if this is just part of its natural process. I still have my eyebrows and haven’t noticed much of them shedding even though most of my flaky skin is under my eyebrows or around them. So I am quite surprised and thankful that I still have my eyebrows and eyelashes. My forearms are still quite scratched up and itchy. The skin is still thick but fragile and ooze if I scratch. Not quite as itchy today though as they were yesterday. My fingers are itchier and cracked more and the top of my hands get itchy. my stomach, back, and legs are pretty much the same as yesterday and getting quite a few red bumps on the top of my feet. Only normal parts on my body are the tip of my nose the palms of my hands and the bottom of my feet. My chest is more flaky today but less raw so that is nice. I absolutely hate it when my chest is raw, it hurts to move when it is like that!
I had a pretty good sleep again, went to bed around 11pm woke up at 3 for an hour and a half and then slept until 8 so broken up a bit but got about 7.5 hours. My ears are less oozy so it helps me be able to stay comfortable while sleeping. I still miss being able to sleep on my stomach though. I used to love sleep! Love it! I was able to sleep 9 hours at night wake up, go to work, have a nap after work for 2 hours and then go to bed as per usual. I loved it! Then when this whole thing started first in January I would dread bed time because it was a horrible itchy mess. Now that I don’t have the stress of work added its not as hard for me at nighttime. I just accept when I can’t sleep and don’t worry about it. I think this has allowed me to actually get more sleep because I don’t stress about how much sleep I get. When I am tired I sleep, if I am not then I don’t and if I can’t because I am uncomfortable then I don’t. Makes bed time less anxious when I don’t have anything to be up for in the morning.
My face is also less swollen and my eyes don’t have yellow discharge today its more of a clear/white discharge. Still gross but not as gross as yesterday! I am still in pain, still itchy, still oozy, and still a bit raw and swollen but it is nice to at least feel a tiny bit better then the day before. I have to pay attention to all the upsides no matter how small so that I can continue to get through this.
I met up with a fellow TSWer and it was so refreshing! I knew it would be nice to meet up face to face with someone near me who is/has gone through what I am but I didn’t realize how amazing it would feel to have a conversation about it all and not feel crazy! You can talk to someone who has never been through all of this until you are blue in the face but they will never ever understand what it is like or sometimes what your even talking about! The looks I get from people are frustrating sometimes because they just don’t understand. So it was so nice to have someone not stare at my grossness! Yay! It made me feel so much better and have more hope for healing and like I have even more support out there if I need. People on the forums and on facebook and even on here are amazing! I am so appreciative of anyone and everyone who offers me words of encouragement, advice, someone to talk to. It is the only way I get through each day, but having someone in the same city is wonderful too. Just adds to my support pool and you can never have too much support, especially in a time like this where its a constant battle of wills to keep going.
I even found myself joking around and laughing with my boyfriend and he said “it’s good to hear you laugh” which made me think of just how miserable I have been I feel bad because it directly affects him too. I don’t mean to not laugh or smile but honestly my face has been so swollen and dry that I haven’t even been able to open my mouth to eat let alone smile. I find my mouth a lot better since using Paw Paw ointment on my lips I can at least smile and laugh now without it ripping and cracking my skin. I am hoping tomorrow will be even better! Here’s hoping but even if I don’t I guess I have no other option but just to get through it as best I can!
Well, I have had a couple of decent days. I am still in pain and super dry and flaky and gross but I haven’t been getting worse. My whole first months felt like every day was worse than the one before and the past couple days have felt like I am either staying the same or even feeling a little bit better. My face is still a flaky mess but it is not as flaky and not very swollen. I have been seeing even more real skin on my face. Not as much oozing either! My forearms still are quite finicky. They go from being very think and smooth to thick and flaky, to itchy! Then back to thin. My neck goes from being ok to being itchy! To being raw. I had white and red bumps come up on the bottom of my thumb and they are still there but some of them have turned into pimples. Its really weird looking.
I find it hard to not be able to do much. It’s hard for anyone not going through this to understand (as seems almost everything) I am home all day and sometimes I can’t even do a load of laundry or make dinner. I feel so lazy and I feel like I look lazy. But some days I cannot muster enough energy to do these things or i am in a lot of pain so all I can do is stay on one spot and not move in order to not have a total break down. Its hard sometimes feeling like you have to defend why you do these things but I find it impossible to explain all of this to someone not going through the same thing. I just hate feeling lazy! On the other hand I don’t want to push myself in hopes that then I can heal faster and be back to work and contributing. Hopefully not having any stress will help!
I am so thankful for having a bit of a calm moment. Through the first month I never thought it would let up. I thought it would just get worse and worse every day until I died. This tells me that I won’t in fact die, that I can handle a lot more than I ever thought I could, and that I have to take advantage of the times where I don’t feel awful and worse. I have been getting more sleep at night but I have noticed that it is completely dependant on my drowsy anti histamine. Which I am ok with right now, its just so refreshing to only wake up 2-3 times a night than waking up 10 times a night and crying from being so tired but so itchy and raw. Ugh! Such an awful feeling. This is the first time since January (11 months) that I have improved without the assistance of Topical Steroids or Oral Steroids. That is a nice feeling, makes me feel like I am doing the right thing and that this is the cure. I think it helps my family see that this might be the answer too, because trying to explain to them that this is the right move and then all you do is get worse and look worse everyday they get concerned and question whether this is helping. So its nice for everyone to see some progress. I don’t seem to count every moment of everyday. The whole first month I felt like time almost stopped and everyday was so long and awful. That was by far the longest month of my life. I think its been about 4 days where I haven’t been looking at a calendar and waiting and hoping for the next day. I am so happy and excited to be feeling a bit of relief. I know that I have another flare coming but I feel like because I have a break it gives me new motivation, new hope, and reassurance. I will be thankful for as long as this break lasts and I will be ready for when the new flare comes. Prepare for the worst but hope for the best.
Also excited to report that I still have hair! And I haven’t been loosing it in clumps. I know that it is still early of course and I am trying to prepare myself for if I do lose some hair but I am just happy that right this second I haven’t. Fingers crossed! I have still been freezing! All the time!
Well, I just had a bath/shower and I am getting better at that hole song and dance! Thankfully, it couldn’t have gotten much worse if I am honest. The emotional breakdowns I used to have were very tiring so something ha to change. The whole event is still quite painful and emotionally draining and requires a whole routine but I at least know how to keep myself calm and to just take things slow and prepare for the pain.
My skin feels like if you were to take a rubber band and stretch it to the very max it can go, now imagine it left there. That is how my skin feels all the time when I am just sitting and not moving. Now imagine somehow stretching it beyond the point that you thought the rubber band could go. That is my skin when I move. It is such an awful feeling and it almost makes me nauseous. I have gotten somewhat used to it in the fact that I actually will move now but it still hurts everytime. I still have a very dry and very flaky face but i put a little bit of a thin vitamin e oil on it and it takes away the look of all the flakes. At least until it dries.
I am still too scared to look at my hair to see if it is falling out or getting thin. Ugh! Can’t deal with that right now. My ear has been excruciating, today I put olive oil, apple cider vinegar, and tea tree oil in my ear for about 5 mins and it took the edge off a bit. Soothed it a little bit and I’ll take all the help I can get!
Well, today is not a good day. It is currently 7am and I have not slept longer than 15 mins collectively. I don’t even know where to start. Had some added stress lately but nothing I couldn’t normally handle but seems that with all my energy tied up in TSW I don’t have any for much else. I’m just so tired. Tired of looking like shit and everyday I seem to be able to find a way to look worse. And I know looks aren’t everything and I know that it’s ok to look like crap blah blah, but I want to be able to wake up, jump in the shower, do my hair, put on my makeup, put together an outfit and go out, do something where I don’t have to look at the ground and keep my head down as to not scare little children with the site of me. I’m tired of the pain. The constant horrible pain. I get to a point where I can cope with it but if anything happens or if it gets at all worse I just can’t handle it and have a break down. So now, not having any sleep, doesn’t help much with the coping. I am tired of the weeping and oozing of well everything! I’m tired of the itching, I’m tired of the tearing skin and open wounds. I’m just tied. Period.
To add to my pain, because apparently I am not experiencing enough already my knee dislocated this morning. Sadly, this isn’t an unusual occurrence. My knees have never been very strong and have dislocated a few times over the years and because of that it makes it easier and easier to dislocate as time goes on. Especially being bed ridden mostly right now doesn’t help with strengthening the muscles. Anyways, through my tears of pain as I re-located it I almost had to laugh. Just thinking to myself “alright, what else can we add on here.” Like could we just maybe do one thing at a time? Is that too much to ask? It’s times like these that I feel like God must be a bored kid with a magnifying glass and us being the ants. I know this isn’t true but it is just so hard to understand the point of all this pain and suffering. Seems like it is so unnecessary. But I know that whatever is hard has the best reward and all that crap, but at the moment I don’t care about the “reward” all I care about is somehow getting through the next day.
I think it is safe to say that my break might be over. Just hoping this flare isn’t as bad as the first one. Still not sure how I made it through that first month of agony. The roller coaster continues.
Well its not going so well. yesterday and today have been quite trying. My forearms are so painful. They itch and they burn and they flake and they ooze all at the same time if you can even imagine that. The itching is so bad and so deep but the skin is so fragile that any light scratch tears my skin apart and makes it bleed and ooze instantly. At the same time it is still very dry and flaky. Ugh! My neck has been a new symptom, the front of my neck and chest have always been an issue the new part is the back of my neck. Where my neck bends at the crease it has been very swollen and oozy. When it oozes it makes my neck itchy and then when it is scratched it makes it break and start the cycle all over again. The makes it hard to sleep because it is so uncomfortable. I found the only chance I have at getting some sleep (even just 15 mins) is to pile blankets up and prop my pillow on top and sleep mostly sitting up lying on my back with towels draped around me.
My legs, out of nowhere, started just watering. I have no other way to describe it but that they just started pouring water! It freaked me out a bit to be honest. I didn’t think anything else in this process could surprise me but this sure did! I have no way of knowing what temperature it actually is lately so I asked my boyfriend and he said it was really hot in our room but I felt cold! I thought maybe it is sweat?! So I put a fan on even though I was freezing and it dried it all up. Ugh! So gross. I first thought it might be ooze but it wasn’t the usual thick and sticky ooze that I have around my ears which then led me to think about it maybe being sweat. Hard thing with the sweat is that it burns my skin and makes it so raw and itchy! Imagine sweating on an open raw rash! Ouch!
I never have a clue what my body is doing or what it is going to do next. It can be stressful at times having so much going on and changing all the time. Trying to remember all the things for all the different symptoms and having the comforts change all the time. One thing will work and somewhat help for a moment and then it stops helping or makes it worse the next moment. It is so frustrating and hard to keep u[ with everything all the time. My face is still so flaky and I am so sick of my face looking this way! I feel like I could live a somewhat functional life if my face wasn’t so freaky looking! I bought sunglasses yesterday and I just chose the biggest ones I could find. Didn’t care if they suited me or not or how they looked I just found the ones that would cover most of my face!
I am still having quite a hard time dealing with this and coping. I am thankful that I had a few days where the symptoms weren’t getting worse but it just hurts so bad right now and got right back into feeling like crap that it doesn’t feel like it was much of a break. I find it hard thinking about my plans and what I want to do because one moment I will feel like life isn’t so horrible and then 2 seconds later I am finding it hard to cope and not have a total breakdown. So it is really hard to think of planning anything because it is so much more of a let down when the flare or bad day comes back full force.
I have not been enjoying myself the past few days. Mostly because my ability to sleep at all at night is gone again 😦 I sure was enjoying that luxury in between my flare. My skin amazes me with how many cycles it goes through all the time, I swear every time I look at my skin its doing something completely different. Its been very fragile lately that whenever I touch it it just tears apart. I look like those babies that need mittens because they scratch themselves to bits! My forearms are the worst, I think it has a lot to do with the fact that the most topical steroids I used were applied to my hands and wrists. I find my hands to be very swollen and painful but I think I am so used to them being that way as it has been a good couple years of broken knuckles and cracks in my fingers and wrists. People used to ask me if I was in a fight because my knuckles were all torn apart and my hands looked so rough. I always thought, “do I really look like someone who would just be punching people on weekends!?” I sure hope not! But I have a really hard time with my forearms as this pain and discomfort is completely new to me in that area.
Sometimes I find myself getting into a scratching fit where I feel like I just need to be moving and scratching, I don’t care what I scratch I just need to be touching my skin and moving. It is so weird, but I figured out that when that happens rather then scratch my chest raw (which doesn’t take much) or wreck my forearms I go straight to my legs. They are sore and swollen and painful but I find they can handle a lot more of a “beating.” I only used topical steroids on any part of my body other than the corner of my eyelid or hands/wrists for about 4 months so I think that is why my legs aren’t quite as bad and can handle a bit more. Also I find the skin a bit more durable. Who knows though TSW is full of surprises and so many ups and downs that this could just be a phase. I could have a lot more to experience when it comes to my legs.
So far my legs have gone through oozing, red/burning, edema but I find they cycle through a lot faster then other parts of my body that one minute they ooze and a few hours later they are dry again. The best thing through all of this is to just be prepared for anything. Easier said than done but I find its going to happen anyways so freaking out or stressing isn’t going to help anything. The one are I have the hardest time with this is my hair. I usually keep it in a pony tail all the time (which is a big no no being a hairdresser!) I just put it back and forget about it and try not to touch it much. It was getting a bit matted so I finally brushed it today and just about had an emotional break down with the amount of hair that came out. It was alarming. I still have hair and can’t quite see any bald spots so that’s good. I try not to think a bout it much because that’s a very hard area for me.
My last ear ache went away (on my right side) after I put the oil mix in it twice. It worked really well and felt great and now my other ear is starting to act up. Makes it even harder to fall asleep (the few times I actually can). Well, here is hoping I can just keep handling things and just rest as much as possible!
Day # 57 (8 weeks done)
Well, I am a bit reluctant to say that I am doing ok. I am torn between wanting to celebrate every moment that I am not feeling like hell but also concerned about preparing myself for a flare. I want to be hopeful always but at the same time ready because TSW is a nasty thing that can flare at any moment. Don’t get me wrong I am thankful for feeling better and I am so glad that I am having a break but I just want to be ready for anything! I am 5 days from starting my third month and a lot of people have mentioned a 3 month flare. I know everyone is different so its hard to say but I just want to be prepared for it if it comes. If there is one thing I have learned is that TSW is going to do whatever is needs to whether I worry about it or not so I am trying to just let it be and let it go and just take it day by day and whatever happens happens. Easier said than done of course but I am working on it.
Another point of concern for me is that I have just found a cold sore. I am prone to get them so this is nothing new. I don’t get them very often but once and a while and I can only imagine the physical/ emotional/ mental stress doesn’t help keep cold sores at bay. The concern I have is what they call eczema herpeticum.
Eczema herpeticum is a rare but severe infection that generally occurs at sites of skin damage produced by, for example atopic dermatitis, burns, long term usage of topical steroids or eczema. Some sources reserve the term “eczema herpeticum” when the cause is due to human herpes simplex virus. It appears as numerous umbilicated vesicles superimposed on healing atopic dermatitis. it is often accompanied by fever.
Basically my understanding of it is a cold core that spreads due to all the broken and damaged skin around it. So where it would usually stay on your lip it now spread to anywhere it comes in contact with. Ugh! Yet another thing to worry about. I am trying to just leave it and not touch it and use a lot of soap on my hands and just keep away from it and let it run its course? I will be keeping a very close eye on it and at any sign of it spreading I will be going to the doctor immediately. I am really hoping it won’t come to the if I can just leave it as thankfully the skin right near it is not looking too damaged or broken so we will see.
On another plus side I have been able to get some good rest during the day. I seem to be able to get close to 8 hours but it has to be during the day.. so weird! I notice so much healing when I get a good sleep, my skin usually looks very different when I wake up. I am still very itchy, been oozing in spots, watering sometimes mostly on my legs, my sweat smells weird (almost sweet) and I seem to sweat in weird spots and a lot and I stink! Skin is very dry and flaky but compared to my first month of symptoms they are far less severe right now. My forearms seem to be the worst and most difficult to deal with and I think they will be like this for quite a while and probably the last to heal. I am guessing this because that is where I started to use the actual doctor prescribed topical steroid in 2013. Using it mostly on my wrists, fingers, and top of my hands. I didn’t use topical steroids much anywhere else so I imagine the arms will take the longest.
I have read so many good things about the sun and how it helps TSW so I have tried to make an effort to get more of it. I am so lucky to live in Australia and for it to be summer here right now (December). Seeing as I could have very easily stayed living in Canada where it is very dark, cold, and winter right now! I count myself very lucky to be in such a beautiful country with lots of sunshine and warm weather! One problem though is that I do not enjoy the sun! I don’t know how some people just sit and sun bathe for hours. I don’t tan as when I am not going through TSW I have very pale skin so maybe this has something to do with my avoidance of the sun. So this is actually a challenge for me but of all the things that come from TSW this is a very minor inconvenience that I can definitely handle. My boyfriend loves fishing and there is a big lake right out front of where we live so the other day while he was fishing I was trying to get as much sun as possible. It was nice though because it allowed for some downtime of just relaxing, bonding with my boyfriend, and soaking in some sun.
One good thing that has come from TSW is that it has killed a lot of insecurities for me. And of course if you have or are going through TSW you ask how is that possible! Well, this is by far the most disgusting I have ever looked. Any attempt at looking better just goes to waste as there is so much shedding skin everywhere and its just nasty. I can’t wear nice clothes as they itch or are too tight so I have to wear baggy sweat pants or a baggy over sized shirt and usually with no bra. No makeup of course, my hair is always pulled back in a bun and there is usually a smell surrounding me or ooze all over me or dead flaky skin everywhere. Through all of that I have HAD to just let go. I have no control whatsoever over how I look right now and trying to control it is just a huge waste of time and energy. I am forced to not care what people think and just hope that the ones that matter will stick around through this. A lot of insecurities that I had (which now seem very minor) have gone away. They seem like such small things that I should never have worried in the first place. I usually HATE! my arms and legs. I don’t remember the last time I would go out without something always covering my arms and legs. Doesn’t matter if it is winter, summer, Australia, Canada you can bet that I am covered up! I really don’t care as much now and feels a little bit like a weight has been lifted. There are not many good things that come from TSW but this has been one of them.
Day #59 (New Year’s Day)
Wow, what a year is all I can say. It is so hard to sum it all up because this has been a very eventful year for me and not in a good way. It has been one year since my Topical Steroid Withdrawal started for me. I never knew that at 24 I would be facing some of the hardest things I have ever had to face. My 2014 year started with a rash on my chest that spread like wild fire eventually covering every body part. I will never forget being so scared that the doctors didn’t know what was wrong with me and the things they were prescribing (steroids) weren’t working. It is such a devastating feeling to be hopeless and uncertain of what is going on with your own body! I tried everything I could think of to deal with it but nothing worked. I felt stressed, lost, scared, and isolated. Those feelings lasted for 10 very long months until I stumbled upon the ITSAN website and video in November. As soon as I watched that video and saw pictures of people’s skin while going through topical steroid withdrawal I felt a weight lift from my shoulders. I immediately knew that that was the problem with me! Such a relief to finally know what was wrong with me.
Don’t get me wrong it is still very scary but thanks to ITSAN I don’t feel so isolated. It is by far the hardest thing I have ever had to go through and looking back at 2014 I can honestly say that I am thrilled it is over. I worry about how 2015 will be. I am so early into my TSW and I know I still have a long road ahead of me. All I hope to gain from 2015 is my health back. I have realized that if you don’t have your health you don’t have anything. I am only 25 and I don’t want this to be my life anymore. I have so many things to look forward to and so many things ahead of me that I need to get healed. I have really learned a lot through this process already and I know it has a lot more to teach me but I hope that soon this whole thing will just be something to look back on as a learning period in my life. I wish for 2015 to be a year of healing for everyone!