Wow!! What a journey it has been. So much has happened and when I look at pictures of me from my first month I feel like it was a lifetime ago. At the same time it feels like just yesterday. Is that possible? I don’t even know where to begin, so many ‘feels’ happen when I think of how far I have come. If you had asked me in my first month if I would make it to month #4 I would have said no because I thought for sure I would have killed myself by now. Extreme I know but I had some pretty dark days that were just full of unbearable, excruciating pain and even though I knew people get better I didn’t know… if that makes sense. I had to have blind faith that I would be ok and only now can I truly say I believe I will be fine. I see so much healing in my skin that I can’t believe I didn’t go through this sooner because of how damaged my skin actually was. I had no idea so much of me was broken! Now that I realize the reality of it I am so thankful that I have found out about Topical Steroid Withdrawal because I can feel my health coming back to me. I am still angry that this has happened to me and it is so frustrating because it was completely avoidable and unnecessary! But, having said that, if I have to go through something well, there is a lot worse out there. I can’t believe I am saying these things!!
I still have quite a journey ahead of me still but having true visible hope, helps so much! Even when the flare ups come I know they will pass and I know they are my body healing which makes it a lot easier to get through the tough times. I still have bad insomnia, scratching fits! oozing, flaking dry skin, water still is hard to handle but nothing is as bad as that first month and second flare. I will take this over that any day! I feel ready and prepared for the rest of the journey and cannot wait for the day that I am healed and can just look back on all of this and remember it as a time where I learned a lot of things and found strength I didn’t know I had!
Day # 96
I am still in a calm period so I am very thankful for that and trying my best to live life during this time but also trying not to over due it and let my body rest and heal as much as possible. I think that has helped a lot in not having to work and have that stress to deal with and just let my body focus on its healing. It could very well be a coincidence but I found a big difference in the dryness and flaking of my skin especially my face when I drank a lot of water the last few days. I am terrible at keeping up my ”good” fluids and the other day I had a major head ache, which is very rare for me and usually means I need more water. So I drank and drank and drank! And the next morning my face looked a lot better and less dry and over the past couple days of drinking a lot I have seen improvements. Now this could just be the course of my skins healing but water is always good for us so why not! I still have dryness and flaking and oozing but its a lot more bearable then the past 3 months so I will take what I can get.
Through having some improvements it seems no matter what I have insomnia. Always with the insomnia, very difficult but really makes me appreciate not having to work right now.
Day # 108
Past the 100 day mark!!! Wow, this is amazing. I feel like such a tough chick to get this far haha. No one has any idea just how much we all go through with TSW and I am just so proud of all of us for the strength and perseverance we all show every single moment of every day we go through this. There is no way that any of us will be the same after this. I have realized just how much I need to just trust my body and trust that it knows what its doing and trust that it knows what its doing. I feel like for so long I have always thought of myself and my body separate and that I know whats best, or that I can just hush what my body is saying because I don’t want to do what it needs or listen. Problem with that it that we are one in the same. Everything I do to my body directly effects me. Silly concept I know, but I feel like our day in age is all about ”do what you want” and that usually consists of things that arent that great for your body so just use medications to hush what your body is saying. Well, as we have all learned, you can only hush your body for so long. And I know that thats exactly what steroids do, they quiet your body from it telling you what it needs. Thats how it worked for me anyways and now that I have given up trying to quiet it and have been forced to listen I have never been so good. I see so much healing and things that have always been an issue are healing now. Its amazing!
Last week was Valentines day and I am so thankful and happy that my skin held out and allowed me to have a lovely day/evening with my sweetie. I have a whole day planned and I just really wanted to show him and remind him that I am the same girl he fell in love with, under all the ugly skin, moods, crying, and depression, I really am still me. I couldnt quite do my hair and makeup like I would have before tsw and gone all out and a cute outfit, but I did attempt. My hair is so thin and flat and dry it got me quite emotional trying to make it look pretty because it just isn’t the same as it used to be and my hair means a lot to me. So I ended up pinning it to the side and attempting to curl it. I was able to put some makeup on my eyes which is a lot more then I have for a good 4 months now so that was nice, the whole time I was worried thought because I had to put coconut oil on my face to calm down the flakyness so I was worried I would turn into raccoon eyes. My outfit was a bit weird. I tried to just out together nice things but things that would be ok on my body lol. I think he appreciated the effort, it was more I have done for my appearance since this started so it felt good to somewhat fit in to normal society and not have people staring at me. Cant wait for the days I can shower, get dressed, get all done up, sleep without worry or stress or anxiety, or pain! Will be amazing!
I still have many problems with my skin and so much more healing to do but I feel so much better everyday when I notice more and more that is changing and in a good way. I know
that at any time a flare can pop up and I am trying so hard to be prepared for that but not let that fear get in the way of me living my life. I want to appreciate every day that I am able to move around and be myself and have hope for the future and that I will one day soon be completely healed. I cannot wait for that day!!!
Well, I feel like my face skin has been progressively getting worse the past couple days. Just so so so dry and flaky and itchy now.
Scratching does not help at all as the skin feels so fragile but I can’t help it at times. Forget what normality feels like or looks like. I look so gross all the time and my skin is so flaky all the time that its awful to have to talk to people because every time I look at my face some parts of it are flaking off and its just so gross.
I miss feeling like a girl, I really do not these days, Cant shave well, anywhere, because I have some sort of rash all over my body. I dont want to make anything worse so I just dont bother shaving. I want to encourage my body to sweat and so I try not to wear deodorant as much as I can get away with. I’m sure the people around me don’t enjoy that. I try to bath as minimal as possible, just cleaning the essentials as when i come out of the water I feel so dry and like all my natural oils are stripped away. My hair has what I call a TSW haircut. It’s wear you have no control over the ”layers” caused by breakage. The left side of my hair permanently sticks straight out as its so short it won’t go back into a ponytail anymore… My right eyebrow is starting to come back so its all sticking straight out as well as it grows in. My face is just so flaky and just ugly!!! I want to feel like a girl again. Just missing the old days and missing feeling like a human and am sick of it all I am 25 years old and I want to get going with my life! I feel I am in a stand still and I hate it because there is so much I want to be doing right now. Oh, the things I will do with life once I get it back!! There will be no stopping me and I will always take this with me as a huge lesson.