Officially starting month 3! Wow, I know I am still in early days but I can’t even believe I have made it this far. If you had of asked me during the first few weeks of TSW if I would make it to month 3 I really would have said I am not sure because it was so unbearable! The second month still had very tough times and a lot of pain but I think I learned how to deal with the pain better or just got used to it. Whatever happened I am glad because it made time go by so much faster than in the first month. I still wouldn’t wish this on anyone it is such a tough thing to go through because it tests you every minute of every day. I can be doing great all day and feeling strong and positive and then out of nowhere I can have just one weak moment in that day and break down. You have to keep your guard up all day everyday which isn’t always possible.
Sleep is still very difficult for me. I can be so exhausted and still not be able to sleep either from the pain, discomfort, or scratching! Its times like those that I am so thankful I don’t have to get up for work in the morning as most days I can only go to sleep at 9 or 10am. It is amazing what sleep can do though. I can wake up with a completely different body. I am so amazed at what my body can do. I really never knew all that is was capable of but I am very thankful!
To recap on my symptoms as of now : I still haven’t really looked at my hair much as it stays in a bun most of the time. I am still not ready to inspect and see if I am losing lots of hair or not. My face has made a lot of changes it is less swollen and oozy but it is still flaky and dry mostly in the areas that I used TS which is top of my eyes and around my mouth. My forehead skin is very flaky and sensitive and I only ever used Protopic there and only for about a month. I had to stop using it because it would burn and itch so bad and make it so much worse. Not nice stuff! my neck still gets oozy and flaky and dry and itchy, mostly when I sleep or when I just wake up. My neck is the cause of most of my discomfort while I am trying to sleep. I have started to sweat more and not be as cold and less shivering which is mostly all I did during the first month so that’s been nice. My sweat mostly smells kind of sweet if that makes any sense. Weirdest thing ever! My forearms are probably the hardest to deal with and most painful. Up to my elbow they are very thick, dry, flaky, itchy, red.. all the good stuff! My hands and wrists are cracked with deep cuts that ooze and bleed constantly. My hands are very painful but they don’t bother me quite as much and I think it is because I have had hands and wrists like that for about 2 years now since I started working in the barber shop in 2012. My upper arms aren’t too bad. The skin is very fragile, similar to my forehead so any scratch leaves a mark but they aren’t overly raw or itchy. My stomach gets a bit itchy but nothing too bad. My legs can get quite itchy and have a lot of scabs on them from all the scratching but they don’t ever really bother me or keep me from moving.
I think my forearms and hands will take the longest to heal as that is where I used most of my prescription TS such as Dermovate.. ugh! But I am very grateful that I didn’t even use one tube as it didn’t help at all! My hands and forearms are a struggle everyday. I have yet to have a moment of relief from them but I can handle them being painful. What I find very hard to handle is when my entire body is extremely painful. I am curious and nervous to see what my 3rd month has in store for me I hope that I can just stay positive and just handle everything that comes my way. I can definitely see progress though. People look at me funny when I say that because I still look like I am dying but I can tell my skin is healing and not just getting worse. I went through withdrawal in January last year without knowing it and scratched my legs quite a bit and they were covered in scabs very similar to how they are now but 7 months later I used TS and Prednisone and it took all my symptoms away but I notices that the spots where my scabs were wouldn’t heal. The itching and pain and scab went away but there was still a purple like spot left all over my legs. It looked like a piece of frosty glass was put over it and almost like there was a wound in the distance. I don’t know if that makes any sense but it is the only way I can describe it. Now I still have scabs and pain and itching but I can see that my skin is starting to look like actually skin and not thin and see-through. The smell of my body changes so often some for the good some for the bad.. When I was on the steroids I could see so many veins and it just wasn’t skin!
Through this whole experience it has really opened my eyes to the fact that I think my symptoms started long before my full body flare ups. I have often had weird body temperature issues mostly where I am freezing! Weird sweating in weird areas that you wouldn’t think would sweat and would stay moist all the time. I would get pimple ish bumps in weird spots that would never go away. I always had pimple bumps surrounding my armpits and I never really sweat THAT much. I would have one to two showers a day and always use deodorant and no matter what I tried I always had both of my armpits full of clusters of pimple like bumps. Since going off steroids all of that is clear and gone and I usually go a few days without bathing due to the pain of water and I don’t usually use deodorant. Not sure what to make of that just yet.
Well, it happened. The day I have been dreading since I started my withdrawal. I took a good long hard look at my hair… Ugh! It was a very difficult thing to do but I knew it was something I had to face sooner or later and seeing as I am now in my 3rd month well, now is as good a time as any I suppose. My boyfriend had to wash my hair for me because my hands and fingers have such deep cuts on them it hurts so bad to touch water. I think he thinks I use it as an excuse to not do the dishes 😉 but he is very supportive and when I tell him my hands are too painful he has no problem and does the things for me that I can’t. I am truly so thankful to have him here with me as my rock. I know that this stuff isn’t fun for him and this isn’t what he signed up for but he still sticks by me.
I told him I was going to brush my hair and take a look at it and I told him that I was going to try not to cry or have a breakdown but I can’t promise. He just sat next to me and had his hand on my leg and caressed me to show his support while I brushed out my hair and had the clumps coming off my brush. Ugh, that was tough. It’s hard to know what is from the TSW and what is from my hair constantly being in a bun and rarely being washed or touched. Either way it is never a fun time looking at clumps of your hair coming out in your hand/brush. I did it though and I got through it I didn’t even cry! I lost a lot of hair but don’t seem to have any bald spots yet. My hair has always been on the thinner side so that doesn’t help. It is a bit scraggly at the ends and I think that it constantly being tied up with an elastic doesn’t help with the breakage. This really hits home for me because I have been working on keeping my hair healthy and growing it out for about a year now and it just makes me sad to know that all that work was for nothing. I know its just hair and it all grows back and it is not the end of the world at all and there are many worse things out there but as a girly girl I do love my hair and want the long luscious locks and its hard to cope with big hair changes. Oh well, we’ll get there one day.
My hair is also very faded and grown out now.. not a nice look for a hair dresser. My natural is a dirty blonde and I had it dyed an all over dark red with blonde highlights. And now well.. it’s a mess but there is no way that while I am going through all this skin pain I am going to put hair dye on my skin.. I am just going to leave my hair be as much as possible and hope for the best possible outcome and try to be prepared for the worst.
Here it is, flare #2… Hell! Ugh it has been just awful. My amazing boyfriend took me on a trip to a place called Mount Gambier here in South Australia for a Christmas holiday. I was so excited but also a bit nervous to go as I had all my comforts at home for my skin but i was feeling pretty good so all was well! He rented a car and away we went on our 6 hour journey and it was a blast! We always have such a fun time on road trips it seems. We got there and we were both pretty tired from a late night the night before so neither of us had much sleep and adam drove the whole way. We arrived and saw a couple sites and had dinner and relaxed and had an early night in the hotel. The whole day I had a symptom that I had back at the very beginning of my withdrawal where I would get a pretty intense itch and so I would scratch it and then a few seconds later my skin would almost bite back. Its hard to describe but I would finish scratching, not even a big scratch, and feel like I satisfied the itch and a few seconds later my skin would bite back almost like a burn.Not a nice feeling and it happened anywhere that I would itch and the cycle would just go on and on so instead of itching I would have to just tickle or caress the area so that while the bite/burn happened It wouldnt be quite as sharp as the feeling is muted with my touching the areas as well. I think it might have been from being so tired but im not too sure. I amazingly got 11 hours of sleep… in a row… at night! I was so happy!!!! My skin felt so much better and you can just tell that sleep is the best way to heal the skin! I felt great, well as great as you can during TSW. Definitely a top day for me as far as skin goes. We got up and did a tour of the blue lake and did some shopping and just had a wonderful day together. We managed to pack in a lot in that day and had a lot planned for the next day but of course 2 good days is too much to ask for! That night I didn’t sleep much and my skin just got worse and worse and worse! I started getting raw over my entire body. My face went downhill and got raw and flaky. My ears started to full on ooze and drip and crack again, just like the first flare. My neck just started pouring ooze as did my entire torso, back, legs everything was oozing. And when I say ooze I mean it was pouring. So gross and the smell was so awful and just so so so awful and horrific. The smell was a mix between disgusting intense weird body odor and metal. The metal smell happened a lot especially after I would scratch. I can’t even describe it to you and just thinking about it makes e want to be sick. The entire day I just kept getting worse and worse and all I could do was sob. My poor boyfriend, here we are trying to have a bit of a break from everything and just relax and all I am doing is sobbing uncontrollably in our hotel room unable to move. Adam spent most of the day trying to comfort me and rubbed my back for hours letting me fall asleep on him so that I could get some sleep. So that was our second day and it was awful. I felt so bad like I had ruined our trip and was so disappointed. I hated that I felt so great the day before and almost in a way put my guard down just to have a horrible flare creep in. Just when I feel like tsw is bearable it proves me wrong.
We got up early the next day to come back to Adelaide. I basically had to cover myself in towels to keep myself from oozing everywhere. I didn’t move for the whole trip back and as soon as I got home I had a Apple cider vinegar and epsom salt bath. I literally had to peel my clothes off of myself because they had oozed and dried… Ugh! The bath felt nice and I stayed in for probably 45 mins. After the bath always sucks and during ooze is no different. It did help calm the really bad oozing a little bit but then it get so dry and tight. I felt like where I had oozed and dried the skin was more dry than it has ever been. It was an unbearable 2 days of just full body pain and was so awful I can’t even put it into words. Great timing 😦 After my bath is when I am usually in the most pain as my skin dries out and my poor boyfriend knows this and has to deal with me and my crankiness from the pain during this time (I do try not to be a total bitch! Sadly sometimes the pain takes over though) I came out of my bath to see my boyfriend had cleaned our room up and vacuumed and replaced all the sheets to clean ones and all the bedding was new that he bought for me and he put two sheets down for my oozing and had a new towel that he bought waiting for me. I am so lucky to have such an amazing man in my life and am so thankful for his help. I don;t know where I would be if he wasn’t here for me like he is.
Last night/today I got about 7 hours of straight sleep from 6am – 1pm so that was nice. I was wrapped up in towels and duvets as the shivers/shakes came back with the oozing. What a hell of a couple days. So much pain in such a short amount of time. I woke up today covered in flakes. face,neck, breasts, and arms are all one big skin flake. So dry and so painful and so itchy. All I am in those areas are flaky dry skin. My stomach and legs are still oozing though but not quite as raw as they have been. I have been getting some painful zingers in my boobs and boy are they painful!! Damn they take your breath away. Hasn’t been too unbearable as they don’t last long but they are a shock when they come. I wont be having a bath today as my upper body is so dry and unbearable as it is. Tomorrow if my lower half is still oozing I will have a lower body bath only.
While I was oozing my neck and arms got so itchy and I basically scratched all of my skin off. I am no joking when I say there was no more skin there. Especially my wrists, elbows, and neck crease. That of course made everything worse but there was no way on earth that I could stop scratching. Not even a remote possibility. On the positive side my fingers and tops of my hands are better. My fingers have made a complete turn around and are actually looking quite nice. The tops of my hands are still itchy and not looking that great but I can see some of the skin looking a little bit less swollen and not as much elephant skin so thats a plus. My hands got quite painful there for a while and seem to come and go with deep cracks in my fingers but for right now my hands are probably one of the only parts of my body that are showing some improvement. Even the bottoms of my feet got super itchy and raw… Such an awful process.
I am only 9 days into my 3rd month and it has been very very VERY tough. It is different for everyone of course but it seems for most TSW is it’s worst during the first 3-6 months. So hopefully I am either in my worst now or I am halfway done with my worst. Right?! Please!? I have not been enjoying myself not one bit. I have been extremely itchy, thankfully my skin seems to be a bit tougher so it can handle a bit more of my scratching rather than just tearing but it still hurts quite a bit. My neck got so itchy a couple days ago and I couldn’t even try and stop myself and I shredded it to nothing. I mean I was still frantically scratching when there was no skin left and it was just ooze. When people say to me “just stop scratching” or “don’t scratch so much” don’t you think if I had any control over it I wouldn’t scratch myself to the point of not having any skin anymore, especially on my neck? While I am in my scratching rage where I cannot control it I know that I am going to be in so much pain for days after and there is no way I can stop myself from the scratching fit.
So needless to say my neck has been so painful. It has been hard enough o deal with on good days where it is just cracking now it is cracking as well as there is no skin left just one big oozing mess. It is so hard to deal with and look at I feel so helpless to my body. Instinct is to keep your body clean and healed but what if you have no control over those things. It is so hard to handle not being able to do things that should be easy and natural. Because of my neck issue I have had to have more baths which I hate because they are so painful! I finally slept today though after about 3 days of not being able to lay down I finally got into a position where I could fall asleep and that is the only time I actually see a difference in my skin and actually see some healing. So not sleeping just makes for very long and painful days. I just hope this month can finish already! I can;t help but think of the movie Click with Adam Sandler where he has a remote where he can control his life. I would so use that right now and fast forward to when I am healed, I don’t care if that is 3 years from now I would fast forward past 3 years of life if it meant the pain would just stop!
Day # 74
Seems like there is a lot of changes happening. I have always said how supportive my family has been and how this all must be tough on them as well. It has proven to be too much for my family. Well, not as much my immediate family but my step mother. Quite sad really how it has all worked out but TSW challenges really show you who is truly there for you through thick and thin. My step mother and I have always struggled to get along but until now have managed to find a way. Recently she made a few comments about how I stink and how my room stinks, which believe me it does!!! Yikes I reek, especially when I am oozing and spend all day in my room it is quite awful and I find it hard enough to be in my own skin. Well, through this whole process I find it hard to be in my own skin! Sometimes the smell makes me gag and nauseous and even after I have a bath it takes about 15 mins for the smell to come all over my body again. Some days are worse than others but overall its quite gross for everyone. I guess it came down to hurting my feelings. I already feel like such a disgusting mess and I am so used to being done up and my hair done and makeup done and I can’t do any of that. I can’t work up the courage to wash my hair some weeks.. yes I said weeks. Because my hands and fingers are so cut up. I don’t feel like myself and there is nothing I can do about it and it makes me sad to feel trapped in this awful painful mess of a shell. I deal with this every moment of everyday and then when my own ”family” tells me I stink it just makes me feel even worse. Anyways, this whole thing brought to head all of our issues which has led to my dad taking her side and me being kicked out.
My dad is still helping me until my boyfriend and I can find our own place but this whole thing has really divided my family. I know how hard it is on family and can imagine even harder for a step parent to deal with because im not her kid but thats just another shitty thing about divorce. If my parents were still together and I was ill and needed their help neither of them would have ever kicked me out no matter how hard it got because I am their daughter. This has made me realize especially that just because you are brought into my family does not automatically make you family. I am glad I have realized this now as to not waste my time on another meaningless relationship.
You know when people are grumpy in the morning and others around them say ”oh, its just them, they get grumpy in the mornings” and people know not to take it to heart. I guess I thought my ”family” would be more understanding and supportive of my being in pain and just dealing with the stresses of everyday life. I can be very hard to deal with and handle but my boyfriend sleeps next to me and cuddles me despite my stench. My dad is there for me when he can be and it only seems too hard to handle for my step mom. Again, I think it comes down to family. I am disappointed that it has now divided my dad and I who have always had a close relationship as we seem to be very similar people! I think I was naive in thinking that even after divorce you can have a family but its not true, not in my case anyways. So my dad sticks with his wife over his daughter in time of need and my mom has her life with her husband and I guess that leaves me and Adam to be our own family.
It seems to be what my brother did and he seems to have accepted it a lot better than I have or at least a lot sooner. Him and his girlfriend already seem like their own little family. Adam is my true family now and whatever life we create we will do together and one day I will be able to have a true family of my own. It is sad that it has come to this but a lot seems to be expected of me right now but the truth is that this is the lowest I have been in my life and I just need to feel taken care of and empathized with and supported and to just feel like a daughter.
They have supported me for what will end up being 4 months and I appreciate it all and am very thankful. The first 2 months of withdrawal have been very difficult to say the very least and I don’t know how I would have gotten through that time without them. Now with these new stresses and challenges I just hope that maybe the worst is behind me.. eh eh?
Today, my hands were… ok? so I managed to wash my hair and boy, more hair came out this time then last time… I thought there was a lot last time! Just so hard to handle seeing these things happen to your body that are out of your control. On the plus side I am feeling a bit better. The flare I had last week was so hard for me to handle but it has been just over a week and I am feeling quite a bit better in comparison. My skin is starting to look thicker, in a good way. Like actual skin and is making me realize just how un-natural my skin was in topical steroids and Prednisone. It always looked clear and see-through and you could see every vein! So it is at least nice to see glimpses of healing even though I am still so early in my TSW. My neck is giving me the most grief at the moment and is hard to comfort that area of my body but am hoping it will subside soon. 2 flares down!! How many more to go!?!?!? Wish I knew but all I can do is take every day at a time.
Wow it’s sure getting up there. I cannot even believe that I am almost done my third month. Never thought this was going to be possible and never thought there would be an end in sight. Since January last year when all of this started it was so scary and shocking and I was told time and time again that I would just have to live with it I never thought that I would truly one day go back to normal or that it was even a possibility. I am by no means saying I am back to normal or anything close for that matter but I can see healing. Things are still healing that I didn’t even realize weren’t normal. Since my last flare at the beginning of my third month (the really horrific one) I can now see skin. I can see what it should look like. Patched of white and the feeling of something like natural oils coming through. Amazing! Don’t get me wrong I am still not sleeping at night, ugh! I am still itchy all day long! I am still so dry and tight especially after the dreaded bath! I still manage to scratch layers of skin off. But even with all this pain and what most normal people would look at and call gross I see healing. I see that I have been through worse and who knows maybe I have more big bad scary flares to go through but if each time I see healing like I have after this last flare well then I will just have to grin and bear it because it will all be worth it. I have had patches of ”eczema” on my skin since last January that I have not been able to get rid of, not properly even with steroids and now they are gone! Granted they might flare again but this is the first time in 1 year that I have seen any improvement without the help of steroids. Just me by myself. I am proud of myself for not taking what the doctors told me as my life now (mostly because I wouldn’t be able to live that way) and researching on my own by myself and finding the answer and applying it. I never knew I had all of this strength in me and I really didn’t know my body had this ability. Being able to see it work its magic all by itself is amazing and I definitely under estimated my body and what it is capable of.
I still have quite the road ahead of me but for the first time in 1 year I have actual hope in what I am doing and that it is the right thing to do and that I will one day be cured of all of this and be free of the TSW chains. It is so encouraging seeing improvement especially after so much doubt and uncertainty and just pain. This has opened my eyes to how I will go about treating my body and to trust my own instincts and not just take what is told to me as truth.
I would be lying if I said I wasn’t scared.. I am so terrified that I will get another flare like my last one the came on so suddenly after I was feeling so great and that just knocked me right down. Just the worst feeling I have ever had and now that I am having a bit of a break and feeling ok and not in horrific unbearable pain just makes me very aware that a flare could happen at any moment. I just try my hardest to stay calm and reassure myself that I can handle whatever comes my way as I have gotten myself this far. All I can really do is get through it and wait for the next break.
I was looking at my wrist tattoo today and I haven’t seen it that clear since pretty much when I first got it. My journey really all started when I had a reaction to cutting hair at the barber shop I was working at and my fingers were very irritated. So the doc gave me the Topical Steroids and I never really thought about it but then a little while later my wrists both started to rash really badly. The rash on my wrist started very shortly after I got my tattoo so my tattoo hasn’t looked nice or clear for a while. I remember scratching my skin so hard that I was sure my tattoo wasn’t going to make it out of this very pretty but I am amazed at the clarity and brightness it has.
I have learned through this last flare that sudocrem is my best friend in the whole world!!! Through this withdrawal I have really tried my hardest to use minimal help from other things then my body. I dont take any pain killers and I dont take anti histamines. I have taken some anti histamines but for the most part everything is natural and mostly just up to my body to heal BUT sudocrem is with me always. my neck has been such and issue for me and so painful and raw and now I put sudocrem on anytime before bed and I put a good layer around the base of my neck and drape a towel around my neck and sleep and my neck generally feels fine and I haven;t had a raw issue with it yet since I have done that. I highly recommend!!
ITCHY, ITCHY, ITCHY! That is the only way to describe the last couple days. Mostly my hands, wrists, and forearms are the worst. I expect that these areas will take the longest to heal and have the most symptoms as my hands and wrists are where I applied the most topical steroids. It’s a tough place to have pain and itching because I use them so much and for so many things. I am grateful though because I have been through way worse! At least my skin can take a bit of scratching. I remember not too long ago I would touch my skin and it would rip apart. I scratch so much that I have so many wounds from how long and hard I end up scratching sometimes. I hate it and get so mad at myself when the pain I am experiencing is from the wounds I have caused myself from not stopping scratching but it takes so much will power to stop and sometimes I just don’t have the strength in me to stop. I think of it like the movie Twilight… I know cheesy blah blah. When Edward is explaining that stopping drinking someones blood after they have started is near impossible and sometimes they can’t stop. That is exactly how I feel about scratching, once I start its almost game over every time. It is especially hard when I am half asleep. This is why I try and just wake myself up if I am tossing and turning or if I am scratching. Lately I have been finding this harder to do as I seem to stay in the hazy half awake stage so much that I don’t know whats going on until I have so many wounds that will take days to heal. On the other hand when I actually can get some sleep my skin looks so amazing after. It is the only thing that makes a noticeable healing difference and in such a short period of time. I try and get as much sleep as possible even if it is just 15 mins here and there its better then getting no rest. Last night I got an amazing 12 hours of sleep with only one break in between. My skin looked so much better when I got up its such a rare occurrence I am so so so happy when it happens. Haven’t had a good rest since the beginning of my third month. I’ll just keep trucking along and hope the itching calms down soon or I learn to better handle it!