I have finally finished one full day! I have been off Prednisone for one day as well as my topical steroid and boy oh boy am I full on itchy! Wow, it takes no time to come right back full force. I slept from 11:30pm until about 3:30am and tried to go back to sleep for about an hour and did so on and off but the itching was too much and I figure I end up doing more damage lying there scratching then I would just getting up and being tired. So here I am at 5:30am still really itchy but trying to keep my mind off if it.
You can already see a difference in how my skin looks The glass like look is fading away and my skin looks more like actual skin but it is bigger, if that makes sense. It is “swollen” in a way. As if each tiny bit of skin is larger then it should be. That’s how it looks anyways. My arms are the itchiest. Forearms and upper arms as well as the top of my back. I have bits of skin scratched off so I have scabs already and bleeding from the scratching and its only been one day.. That’s crazy!
I took my antihistamine last night before bed (11pm) and took my probiotic in the morning and at night. Drank about 10 glasses of filtered tap water. Adam (my boyfriend) and I went for a walk on the beach the other day and I had a scare that night. After my shower my face and chest were really red. I thought oh no! Its back already but it turns out it was a sunburn.. That’s how my TSW can look though like a nasty sunburn. I am going to try and get some more sun, not too much but at least a bit more so my whole body can get some vitamin D which is something I haven’t gotten much of in my recent years so I need to make an effort to get more.
Sometimes when I really can’t sleep at night or start out really itchy Adam will spoon me but also half lay on me while spooning me so that I feel secure and can’t scratch as easily. It usually helps me at least to fall asleep so that is at least one thing that helps a little bit. And when you are that itchy, anything that proves to assist, even just a bit makes a huge difference. I’m not frustrated yet. I am tired and wish I could just sleep but other then that I am hopeful still and looking forward and confident I can do it and feel better and be better and healthier, begin being 25 and 2015 properly for once. Better late then never.
This evening was nice, I had a 1.5hr nap at 7pm and at 9 me and Adam went to the beach for a nice quiet walk in the water for an hour and a half, it was really nice and peaceful.
My skin is getting itchier every moment.. So that sucks. My arms are the worst, the corner of my mouth has a lot of dry skin. My eyes are swollen and red and under my left eye is red. And my chest is red and raw.
I am still very much motivated though. So far other then itching and a headache its been a breeze. I really hope my skin starts to look better soon though! Just have to keep my eye on the prize, TSW here I come!
Well it is 1:30am the morning of my 4th day and I can’t sleep. I went to bed at about 10:30pm and Adam was snoring so I woke up at 12am. My skin isn’t crazy itchy but it is really red and blotchy. My face, neck, chest and arms are the worst. My eyelids are getting a bit swollen and I have lots of dry skin all over my face. My scalp seems fine so far so that’s nice but my headache is still there a bit but its getting better for sure. Just trying to drink a lot of water while I am awake. I seem to always sleep so much better during the day. Not sure why that is. I feel bad for those people that are around me..
Well it is the very early morning of the 5th day. And I mean it just started. I had a soothing bath tonight it was:
1/2 Cup Organic Apple Cider Vinegar – with the mother
1/4 Cup Baking Soda
7 tea bags
I definitely felt my heart rate speed up and I stayed in it for 20 minutes. After the bath I used castor oil and also organic Argan oil. My skin looks as bad as ever. It is awful! My chest is raw and red and blotchy, my face is swollen and red, my whole body is crazy itchy. The only thing keeping me going is knowing this is the TSW process? Right? Ugh, I am trying to keep the motivation and keep the positivity and keep away from doubt. Doubt is your worst enemy when you are going through TSW.
I am sleeping on the couch tonight to try and get at least some sleep. Haven’t gotten much the past few nights and I know that doesn’t help with healing. Hard to fix though when you are too busy scratching your skin off to sleep.
Today I did a lot, I walked a few blocks to get a few things done. My legs are hurting! A lot, they are throbbing and I was exhausted after I got home but still couldn’t keep still long enough to sleep. It is very frustrating but hopefully tonight will go better! Here we go. Bring it on!
I have been extremely concerned. My skin is so so so so so bad I can’t even describe to you how awful everything is right now. I have lots of ear wax, cracking on the top crease of my ears, my whole face aches and burns and itches and feels tight and is hard to move or make expressions. My neck and chest are all really swollen and red and itchy and hot and burning. My fingers are itchy and cracking in the creases, my arms are one consistent red. It looks like a bad sunburn all over the top of my body. My stomach is itchy but surprisingly not too bad as far as redness goes. Although my stretch marks that were once white and “healed” are now bright red as if they were bran new. The scar under my chin that has been healed since I was about 7 is now dry, red, itchy, and burning. My legs are itchy but not overly red or dry, and only really itchy if I touch them or something rubs against them. My legs still ache but not as bad as yesterday. I keep going from hot to cold. My skin is burning hot to touch but I am feeling cold. I cut my fingernails short so it would keep me from itching. Sadly when TSW itches it doesn’t matter if you have nails or not you WILL scratch! Now the joints in my fingers hurt from pressing down so hard when I itch and I have a butter knife that I use to scratch for me now. That’s how bad the itch gets sometimes. I also have bruises everywhere from all the pressing.
I am frustrated and scared if I am being honest. How do you know that this is indeed what they call TSW? What if it is just my eczema getting worse? That is why I googled more about TSW and it explains that everyone feels the fears I am feeling so that made me look at it a bit better. But I have tried just about everything else and nothing worked so this is really my only option left so it has to work.. ? Right? Its definitely hard to stay positive and motivated when you start questioning what is going on. I really have to just trust. Trust that my body knows what its doing and it knows how to heal itself and that I don’t always need to step in.
I still know this is what is needed and I have to keep going even if it looks impossible so that at least I will know and can say that I did it. I owe it to my body to give it this chance and treat it better, clearly my body is pissed and done with whatever I have been doing to it in the past and now I have to give it up and stop being selfish and give my body a chance. I am only 24! I never want to deal with this again so I might as well do it right and keep with it and see where it takes
Nothing is harder then having to go into public when you have rashes and flaking skin all over your body especially your face. Something about having your face disfigured really does damage on self esteem. No matter what my weight has ever been I have always been able to find a way to be ok with myself and when I went in public I don’t think people could tell that I ever had any issues with my body. Having a rash and dry flakes everywhere and covering my face it is impossible to find it inside me to be ok with how I look. People look at you like your a leper and you are contagious. They use caution around you and you can tell they are trying to be polite but you can see it all over their face that they hope they don’t get what you have. Or they offer advice, the amounts of advice that I have received I could write a book on that alone. “use tea bags on your knees 20 minutes before you crack your knuckles; that’s how my friend’s cousin’s daughter cured her eczema” huh? That’s usually how it sounded. Or that’s usually how helpful it was. I know people try to help but when all you can do is try and forget that you look disgusting and all people do is bring it up it gets exhausting. No one knows what it is like unless they have been through it. All day everyday all I do and all my energy goes into me not breaking down. I am so close to having a breakdown its not even funny. I am so devastated that this has happened and I know that there are so many things worse out there in the world and that gives me some comfort but this is definitely one of the most difficult things I have had to go through. Its the not knowing if what I am doing is helping or hurting. How long will it take? I am looking worse and worse every single day and how do I know that I am doing the right thing? How to I know that this is TSW and not just my eczema getting worse and worse? I don’t. I won’t know until I try it and give it my best shot for as long as I can.Sometimes I just want a hug without having to ask for it and sometimes I want to be told I am beautiful. Stress…stress…..stress…. That’s all I feel right now. It hurts to walk, talk, make expression, move, sleep, lay down, sit up… It hurts to just be and that is very taxing when every minute of everyday you are trying not to focus on it but that’s all you can feel. My body is either covered in eczema rashes, pimples from the small amount of skin that is ok but overloaded with creams and lotions, or bruises/scabs from pushing and scratching so much. So sexy… I can’t stand to look at myself. Just when I think that its feeling a little bit better I get a glimpse in the mirror and its a hard reminder that oh no actually I look worse than I did yesterday.
I hate reading about other peoples success stories. Does that make me a bad person? Reading about how sally “gave up eating celery and now she is all cured”… Ugh great for you, i am so happy for you, why can’t I get my cure?! Why does everyone around me have their cure and I don’t have mine? What’s the deal? And another thing that pisses me off is seeing people who don’t do anything and just have gorgeous skin! I would do anything to have beautiful skin! I was always known for having smooth, soft, even, skin with no effort at all. I miss it so much, almost forget what that is even like.
I woke up today from a short sleep as usual about 4 hours sooo dry and covered in skin particles. So gross, so I had a bath right away. When I am in the water that is the only time I get any relief. So I had a soothing bath and then I drained the water and I added fresh water and Organic raw cold pressed coconut oil to the bath so I could get some moisture from that. Mostly I did that because I am almost out of the argan oil I bought 3 days ago and it costs $40… Coconut oil is a lot cheaper so I am hoping maybe I can mix between the two. Castor oil is good but I find that it can be hard to spread on my body and it smells strong. Argan oil is lovely but expensive!
I feel just as discouraged as I did before I slept sadly. So getting some sleep didn’t help my confidence. I just wish you could know that you are doing the right thing and heading in the right direction. I have to take a huge leap of faith and jump in the discomfort on just faith that my own body knows how to fix it and is working on it. Having never before been in tune with my body this makes it hard to all of a sudden have faith in it. I have no idea what it can do I have never let it. So I am really trying to give my body a chance and hope it knows how to heal.
Usually when my symptoms of “eczema” came back after a dose of prednisone ( believe me the symptoms always did come back!) my back was the first to get itchy but my back, for the most part feels good and moisturized right now. Its weird but my chest is the worst and most painful then my face and then my arms.
It is very difficult to know that at any time all I have to do is go take prednisone ( that I have in my cupboard) and all of this will go away. Ugh! I want that so bad! Problem is it comes back as fast as it disappears too. And probably worse on the inside of my body and more damage. Trying to keep my head up and keep my positivity and have faith!
Well needless to say I think today was the worst so far and hopefully the last bad day? Too hopeful? I am so sick of crying, any little things that happen, where in normal day life I can handle just fine, but because all my energy is used up right now I have no extra for anything else. I am an emotional wreck and it doesn’t take much to set me off. I am so sick of seeing all the skin fall off me every time I move or touch my “skin.” I want to peel my skin off and just start from scratch. I want to be put in a coma while I go through this process so I can just sleep through it and be unaware of all the pain.
I don’t know what I would do without the people in my life who do support me. My friend Jeff always being there and available if I needed him. Just knowing that someone is there for you is sometimes all the help you need. My boyfriend who sometimes has a lot going on in his own life to deal with, working all day and I can’t even be there for him. I want to be able to make him dinner when he gets home from a hard day at work supporting me but I am not strong enough right now. So he has to deal with his own things on his own and he has to deal with my things as well. It sucks being so selfish but I feel like I have no other choice. I can’t handle taking on anything else for anyone else right now. No matter how much I want to I don’t have that option.
I couldn’t handle going to work either. I guess it’s weird being tuned in enough to my body to know what I can and cannot take on. In the past I usually haven’t had the option and now that I do I have no choice but to listen to it. It is very hard being in a relationship and dealing with this. It has its ups and downs. I find it so hard to look in the mirror and when I do I just feel so ugly and gross and it breaks my heart that I hate being looked at by my boyfriend. I feel he must see how ugly I am and he must think I am ugly. He gets mad at me when I say that because he assures me he doesn’t see what I see and he doesn’t care. It is so hard to believe him when I know how I feel looking at me. It is hard to forget too because of how uncomfortable I am all the time. It might be easier to forget if I didn’t feel so gross too. Everything hurts all the time. I don’t feel like myself either. He tells me he loves me for who I am but who am I? I thought I knew before all this happened but now I forget. I can’t remember what it feels like to be secure and sure of myself anymore. All I do is doubt myself now and I am not sure of anything that I am doing. My life consists of trying to sleep, baths, moisturizing, and drinking water, and trying not to break down. What kind of quality of life is that
If I try to think logically though without the emotion and base it on all the things I think I know to be true I don’t see how one day, out of nowhere, my body just starts to attack itself for no reason. It doesn’t make sense. I don’t believe that your body just does something for no reason at all. I believe that my body got over taxed with steroids and was so used to having the steroids on my skin that it lost its ability to do it’s normal functions. Also now anytime there is anything even if its normally not a big deal or normally not an allergy for me now my body has no extra energy to deal with those things and my skin is so fragile that the protection it is meant for isn’t there right now so it seems like anything and everything flares me. There doesn’t seem to be any one thing that makes it upset or flare up life seems to make it flare up. All I can do is believe in myself and my own abilities to know what is right for me. All I can do is have faith and continue. That is the only way I will know for sure and find out for myself what will work for me as an individual. On the bright side I got a full 9 hours of sleep today. Yes that’s right I said today. For some reason I can only sleep during the day.. Today it was from 10am-7pm. But I’m just happy that I slept!
It is almost 5am and it seems I am stuck in a rut of not sleeping at night. I don’t know why my mind just races and I can’t seem to be able to calm myself down long enough to sleep. Or I do sleep but only for a couple hours. It doesn’t make things easier because I am not getting good sleep generally and its hard for me to do things during the day because that’s when I do get some sleep.
Well when I cover my face in castor oil it doesn’t feel like its going to rip apart so that is a plus. I also am using paw paw ointment on my lips, they are so dry! My neck and chest are really red but my chest isn’t as flaky as it was before but my neck is really flaky and the scar under my chin is really flaky too. My stomach is starting to get more red and the stretch marks are really red and itchy. My thighs are not looking really bad on the inner thigh which is where my “eczema” was on my thighs but the rest of my thigh is getting blotchy looking and the crease at my knees are itchy. My calve are ok, they get itchy once and a while and are red and a bit blotchy but overall not the worst on my body. I have a lot of bruises on my legs mostly though because of how hard I press down on them to scratch. I have retired my knife though, was doing more damage than good but boy did it feel good! My neck and chest continue to be the worst but my back and butt seem to be quite nice actually. But when I was at my worst in Canada and working and eating whatever I wanted I wouldn’t sleep because all I did was scratch. I would bleed and ooze from every part of my body because all I did was scratch it raw. My skin is itchy but it isn’t the unbearable itch like I had before. I also had a cat so don’t think that help as I am allergic. I used to scratch so much all the time that I would just start crying from how much it hurt and how awful it was to not be able to sit still without scratching. When I worked at the bank everyone knew my wicket because there was skin all around the spot I worked at the end of the day… I had to constantly wipe down the desk I worked at because there was skin everywhere. It helps me to know where I was at the beginning of this year and know that I have been through worse but I think because I have been battling this for nearing a year I am tired. I don’t have the energy to deal with it like I did when it first started. But thankful its not as bad as before.
I can’t wear makeup because my skin in red and patchy and dry but I wish I could wear mascara at least but I can’t because I have so much creams and oils on my face that it just comes off all over my face.. I love putting makeup on! It was always the favorite time of day and me time and I don’t have that anymore. Sucks!
Well I managed to get 45 minutes of sleep when I woke up from so much scratching. I felt so dry so I went and had a bath and didn’t have baking soda but found some Epsom salts so I used those. I still feel really dry on my face and chest. My forehead and chin are really bad and my neck is so dry. I sure hope my face starts to feel better soon, that would really be nice to be able to make expression again without it hurting. I am so uncomfortable and no matter what I do it follows me everywhere. I can’t even sleep to get away from it. I am so tired but can’t sleep. I don’t have a headache anymore and my legs don’t throb like they did before so that’s good. Just wish I could be able to get comfortable.
Today my fingers on my left hand have been a bit numb and tingling.
Still not really sleeping at night but have been getting a few hours every night. My skin is feeling a bit less itchy. Sometimes I have moments of really bad itch but they are fewer and far between. Not like when I have been at my worst and all I could do was scratch all day everyday. The smell was so gross too. It would smell like if you rubbed one spot of your skin to the point where its the underneath part where its glossy and puss like. That is how my whole body smelt especially my chest. It was so gross and all I could smell all day, It has a metallic like smell to it. And my whole body would puss and ooze from the scratch and it was so raw that every scratch hurt sooooo bad but I couldn’t stop. It helps me to remember those times because It helps me know that I have been worse and I made it through that so I can make it through this too.
I am also trying not to get my hopes up too much while also being positive. My skin feels a bit more smooth and dare I say less red? I don’t know though if I am just searching for things to be better so all I can really do is wait and see what happens. I have had moments of being absolutely freezing and I cannot get warm and it is 34 degrees out! Crazy.
Day # 20
Well who knew it would be so hard to keep up with this journal thing. Its hard when things are only getting worse and worse and its hard enough to see but when you write it down its almost like reliving it and it is really hard to force myself to sit down and just write. Well I am finding it very hard not to get depressed. Very hard. My birthday is in 4 days and all I can think is that man 24 was absolute shit. Don’t think I can handle another year wasted to this horrific rash. I have never been so uncomfortable, discouraged, unhappy, not myself, frustrated. Just when I think I might be seeing some improvement my skin gets 5x worse. Its almost like “oh, your getting some happiness in this despair? Well, let me fix that by giving you a worse rash.” Its such a beat down. I am dreading my birthday because I can’t imagine another year like this. I don’t even want to enter being 25 like this, so depressing. My skin has been pissed! It got so hot and red and itchy! Because of the reaction I scratched all my skin off and seem to be back to square one. The only relief I get is my baths but then as soon as I get out it goes right back to feeling tight and awful so it sucks. I really feel like I am at the end of my rope and I don’t know what to do.
I have an appointment with the naturopath on Wednesday (my birthday) to go over my blood work results so we will see if anything shows up on there but I’m not holding my breath, so far “the experts” have been less than helpful. I go from being freezing to absolutely burning up. Still don’t sleep. Like what is the point of all of this? I always believed that everything happens for a reason but this? How could this be happening for a reason. My quality of life is gone. I have no purpose other than just trying not to have a mental break down. That’s my purpose right now. That is shit, I am almost 25 I have so many life events coming up, so many things to look forward to but I can’t because all I think about is my rash. What is the point of all of this!?
Currently I have my rash bad all around my lips, forehead is dry, neck, chest is raw and itchy, ears are cracked, stomach, stretch marks, legs hurt to bend or walk, top of my arms are raw and itchy and flaky, wrists are itchy and scratched raw and bleeding, top of hands, fingers, back is now getting big patches and butt.
Day # 26
Imagine with me. Ever experienced some sort of pain on your body? Maybe you have had a bad headache or migraine before, or perhaps a bad back ache, so picture that pain and remember what it felt like. Let’s take the back as an example it hurts and aches and its hard to find a way to get comfortable, but eventually with taking pain killers and maneuvering on the couch you find a way to make the pain bearable. So now picture that pain that you feel and put it all over your body. Literally from the top of your head to the bottom of your feet. The biggest organ on your body, what everything you are is encased in. Now picture there being no remedy for it and no matter what pill you take it doesn’t go away. Also picture that there is no amount of maneuvering that can give any moment of relief or comfort. Now imagine yourself being told that you will feel that way for months if not years and the only way to get better is to grin and bear it. That’s what Topical Steroid Withdrawal feels like. It is day after day, moment after moment of pain and agony and just when you thought you couldn’t handle any more pain you wake up to experience 10 new more horrific symptoms. Ever thought you were a strong person? Thought that you can stay strong through anything that life brings? Well TSW has broken me to my core. I have never been so devastated in my entire life. I have had bad things happen in my life that most have taken a psychological toll on me rather than physical pain. TSW makes you experience both at the same time. I feel like every moment my emotions are dedicated to trying not to break down. This generally goes with no avail as I am finding myself constantly crying and “losing it.” My mind, body, and spirit are all in despair. I can’t remember who I am, at one time I was fun, energetic, and confident. Now I am the ugliest I have ever looked and there is no remedy. My body is broken and my mind constantly plays games. The doubt game is the biggest one and most damaging. I have never felt like such a weak person. My boyfriend says that I am brave but is it brave when you don’t have the choice but to go through it? And if given the choice I would immediately say no. Is that what makes someone brave? I don’t think so. And is someone brave when they cry about what they are going through every chance they get? I know he is trying so hard to make me feel better and show his support as best he can but I don’t feel brave I feel weak and broken.
This is by far the worst day I have experienced so far. I actually seemed to get some sleep last night, from about 11:30pm until 4:30am I was up for 3 hours and then slept for another 2 hours. That’s considered a massive amount of sleep for me! I got some new sheets and a new duvet so maybe that has helped. I now sleep with 1 sheet, and two full duvets and my feet were still cold but I wasn’t shivering all night so that was nice. It’s gross to sweat a lot! but still feel cold at your very core. I got tan colored sheets as to not be too dark and show every bit of skin flaking and not too light to show all the blood and puss from all the scratching. I am in agony today, everyday since the first day I stopped taking prednisone and using topical steroids has been progressively getting worse and worse every moment and day 1 was no picnic.
My symptoms to date are:
Itchiness! Never in my life have I felt so itchy, and it is an itch that no amount of scratching will help and it feels like the itch is under my skin, feels like I need to scratch my skin off and then keep scratching to have any chance of getting at the itch. But sometimes I do scratch it that much and still there is no pleasing that itch!
Thin skin it doesn’t take much for my skin to break from a bump of a scratch so I can tell my skin is just really thin and fragile. Looks more like actual skin though as before when I was on oral and topical steroids my skin looked see-through and glass-like. No way was that normal!
Oozing This has been so gross. I have read about this symptom but until about 2 days ago didn’t experience it, but here it is! Its clear and doesn’t really smell though, it’s not like puss, it seems more like water. Yuck!
Edema My legs go from being so swollen and tight to back to “normal” all day long. Sometimes it aches to stand for too long (too long being about 10 minutes)
Swollen Face My face is so tight and swollen that it is hard to eat because opening my mouth is excruciating. If I touch my lips it doesn’t feel like I am on the other end it just feels like I am touching an object because they are so dry and tight. It is hard to move my eyes as they are so puffy and huge
Flaking Skin This is a very frustrating one for me, I hate seeing the mess my skin leaves everywhere and the “snow” that falls every time I touch my skin anywhere! Every part of my body is flaking
Redness This has actually calmed down a bit since I went through moisturizer withdrawal. My skin is very very dry and is still red and not normal but not as red as I have been in the past.
Cracking Fingers This has been very painful. My skin on my fingers just break and crack. Big holes appear on the creases of my fingers and the skin separates every time I moved my finger. Makes it difficult to do much
Depression I try so hard to stay positive but it is so hard when the light at the end of the road seems so far away that your not even positive it is there. I cry a lot! I don’t feel like it is due to an imbalance I think that this process is very very hard and taxing and depressing. I know that positive thinking is key to this process but it is so hard to find it in myself sometimes. Generally I go up and down every day along with the symptoms. I can;t even get the only good thing that comes from depression, when you usually just sleep away life. If only I could do that! Maybe then I would be unaware of the horrific constant pain. In fact I hate waking up, I go from being in a peaceful state (if only for a few hours) to feeling that horrendous pain again.
Freezing Sweating That is the only way to describe it, I don’t get how you can be so cold but so sweaty and gross at the same time. I move my head from my pillow and it is soaking wet and I get confused because How can I sweat so much when I am so cold all the time!
Weird Smell My sweat doesn’t smell like normal sweat. I can’t even describe it to you, all I can say is that it is not a normal person sweat smell.
Good luck to others going through this or who have been through it. I have such a respect for all of you as going through this takes an amount of strength I didn’t even know what humanly possible. Apparently this is all the healing process.
Ear wax I have so much ear guzz coming out its so gross, and the oozing behind my ears is crazy!
Well, I got about 3 hours of sleep, then went back to bed for a nap and got another 2 hours so that was ok. An accomplishment for me today was that I woke up and didn’t start immediately crying! I am still in quite a lot of pain don’t get me wrong but somehow I managed to cope with it as I woke up. I hate going from the peaceful state of sleeping and then as soon as you wake up you realize how much pain your in. I find it overwhelming sometimes because it hits you like a ton of bricks! My face is so swollen and so red and puffy and flaky its so gross. Around my mouth is oozing because every time I smile or try to eat the skin around my mouth breaks and cuts causing it to ooze so that’s lovely. My eyes are swollen but especially my right eye it feels so swollen and puffy that the skin is no longer tight around my eyeball but lifting from it and my eye feels dry and any oil I put on to ease the pain goes into my eye, which doesn’t hurt but makes it hard to see. Also there is so much skin shedding from my face its ridiculous. There is skin every where and in my hair. Looks like I have dandruff. My neck and chest are still red and swollen but not quite as itchy and raw. My arms are quite swollen and puffy with a lot of scratch marks and scrapes from how bad they itch. My legs are quite raw from the scratching and the top of my feet. My ears are oozing a lot and quite flaky and dry.
Well, I didn’t cry as much today. Come to think of it I don’t think I cried at all today! Wow, that is the first time in 28 days I haven’t cried! That’s quite and accomplishment. I notice my weakest time is when I just wake up. I hate that feeling where you think you just had a nightmare but then you realize that its reality and you are still in it… Yuck! Anyways, I think I am learning to just stay calm after I wake up and I try and go right on to my computer so I can take the focus away from my skin and distract myself. Still very flaky, still itchy. Definitely have elephant skin on my legs and a bit on my forearms. My forearms are quite painful and the skin is soooo thick! It is thick but if I scratch it even just a little bit it breaks and oozes. My face is the most painful hands down. My eyes are still swollen and I have gross oozing around my lips and my whole face is really flaky and so dry! Very uncomfortable. Not to mention gross to look at. I avoid mirrors at all costs! My legs are very swollen and my feet look like they are going to explode. Neck and ears are still oozing whether I touch them or not. Trying to keep my fluids up as best I can. My fingers are quite sore and cracked and swollen. Very painful to wash them or get anything on them. Best things to get me through still are watching T.V./movies and sleeping.
Well, today was a very difficult one. I know I say this everyday but today was the worst so far. And it’s true because every moment of everyday gets worse. I had to go get registration for my car today and usually I try and avoid being out in public as much as I can because I feel and look awful but this I had to do and I had to do today. Well, needless to say everyone stared at me and couldn’t stop looking at me. Like grown ass people couldn’t look away from me, definitely makes me rethink how I have treated others. How hard it is to just be out in public and then add on top of that people looking at you like your a freakshow. I try and remind myself that there are people out there who have to deal with that their entire life and hopefully I will be done with all of this and have it behind me in a couple years. I have learned from this many things already but one thing is how I will treat others from now on.
I washed my face today, and by wash I mean I filled my sink with warm water and epsom salts and soaked my face for about 5 minutes. and ten I made the mistake of putting moisturizer on my face. Thought I would give it a try because my face is so dry and it is just flakes! Worst decision. All it did was make my face ooze more and so I decided to gently take the moisturizer off but of course all my skin came with it which made my face a lot more raw and oozy. So gross, so now its flaky, raw, and oozy. So I learned my lesson. Just hope my face calms down a bit soon, my eyes are so sore because of the swelling. I can feel my heartbeat in my cheeks. My neck has been very itchy so I have scratched it raw and my neck has been oozing. My forearms have been very sore and raw and flaky. I can’t stop scratching which makes them ooze and get more swollen and thick. My legs are still swollen but not quite as bad as yesterday. I can’t walk on them much because it just makes them balloon up! I am currently shivering and so tired but when I lay down I just ooze and it keeps me awake trying to manage all of my oozing body parts. So gross and so painful. Still no comfort or relief. I am hoping soon, even just for a day so I can get some strength up. I can tell it is all taking a toll on my boyfriend too so that sucks. My ears are still cracking and oozing a lot. It seems the only part of my body not affected by TSW is the tip of my nose. My back is not overly rashy but it is itchy. I am still scared to look at my hair in case it has been falling out! ugh, not sure I can handle that right now. I have also been taking my antihistamine because my eyes get so incredibly swollen, it doesn’t make a huge difference but at least I can still see.
A big/weird moment for me today was that I cleaned out my purse. I always carry all of my makeup with me, always have and thought I always will. You never know when you might need a touch up! But today I realized that I won’t be wearing any makeup for a while and it is stupid to carry it all around with me all the time so it is in a drawer in my room. That is crazy! I love my makeup, I am so sad and feel like I have had to give it up. It is so pointless to even try and wear any right now when my face looks like this so I had to let it go, perhaps another life lesson I suppose. Don;t think I have ever gone this long with no makeup at all since I was about 14. Seems that life does go on after makeup. Interesting!
Finally at the end of 1 month. The longest month I have ever been through that’s for sure. I am so glad 1 month is just about done because I am 1 month closer to being healed. I woke up this morning so swollen, my eyes barley opened because they are almost swollen shut. I have yellow discharge coming out of my eyes. I constantly have to wipe them so that I can see. It is so disgusting. Never knew my body could be so nasty! My neck is very raw, swollen, red, flaky, and oozing. Been oozing all night as well as my ears. I had to sleep on my back with a towel behind my neck and ears as well as a towel on the front of my chest and neck. I keep getting flakes of skin going into my eyes as well because of all the shedding. Weirdly enough my lips aren’t as dry as they were a few days ago. They are actually somewhat moisturized. I have been using Paw Paw ointment. Not sure if I should have or if it is good for them but they aren’t as sore as they were before and they are even a little bit plump. They look like they have some discoloration and some maybe scaring. When they were really dry and flaky I found I sometimes would pull on the flaking skin because it would get in the way of eating or talking or sometimes just be nasty to look at. I am hoping when this is all over they will go back to normal? We shall see I guess. My neck hurts so badly and keeps getting so itchy. It hurts to bend my neck or turn it at all because it starts to ooze. That is why I have to sleep on my back now, which I hate! I m used to sleeping on my stomach with my arms under my pillow and my face to the side. Mmmmm I miss that! Now I have to cover myself in duvets and towels to keep warm and to not ooze all over everything! Behind my ears actually drip they ooze so much. My ears are full of wax as well. I think I might scratch a bit while I sleep as well because my face has patches of dried ooze which looks like it is from scratching too much. Doesn’t take much though for my face to ooze. I don’t mean to look so sad/mad in my pictures but it is so hard to make any expression with my face being this tight. It is also hard to eat as my mouth can only open so far. Still too scared to look at my hair, I don’t want to see if I have any bald spot, no way! Ugh, I dread that day. My legs are still swollen, I am the definition of canckles for sure! no idea where my leg stump ends and my foot begins. I had to get flip flops the other day because there is no way my feet will fit into anything else.
My sleep has actually not been too bad, I get really tired at random times so I usually go to bed and end up waking up once or twice for maybe an hour or so, usually just to get the ooze under control then I wrap myself up again and drift back to sleep. I even slept passed my boyfriends alarm this morning and I am an extremely light sleeper. So definitely feeling exhausted. I am glad that I can at least sleep through some of this hell. Just wish I could sleep through all of it! Just wake up a year from now with beautiful skin! Sounds amazing. Not how life works I suppose, I have things to learn and whatnot from all this struggle. My stomach is pretty scratched up lately and my back is still not red or rashy but anytime I scratch it from being itchy it oozes right away, so guessing the skin is really thin. My forearms are quite flaky, raw, red, itchy, sore and any scratch I do makes them ooze as well which is weird because the skin looks really thick but its quite fragile. My legs ooze a bit if I scratch them enough but mostly they are swollen, red, flaky, rashy, and itchy. I am still having trouble bathing so I am hoping not to get any infections, fingers crossed!