Today is 15 weeks. The last week has been very healing. I’ve been relaxing at my parents house, jumping in and out of the bath at my leisure, not wearing much clothes, spending a lot of time in the “superman position” on the floor, drinking tea, and watching lots of tv on my new ipad!
My skin is improving since the last “flare”. My back/shoulder area is healing up quite well. I wish I had taken pictures of it before, but what can I do! My whole body has been shedding like crazy. Every night my skin starts feeling tight and looks wrinkly. In the morning it feels like all of my skin is a size too small. After my morning bath, the first shed comes. Within an hour of the second bath, and equally intense shed happens. Then the shedding slows down and the skin starts getting tight again.
I was just looking at my skin and thinking, what is this skin and who does it belong to? It is so scabby, red, cut up, dry, thick… need I go on?
Emotionally, I’m feeling pretty worn down from all of this. But, we will get through. There is no other option. Steroids stopped working for me and made my rash spread.
Here are some pictures of my kin these days. I’m going to work on a day in my life showing the daily changes in my skin.
Happy healing skin friends.
I’m slowly recovering from the week of hell I’ve been through. Things are slowly looking up. I came to stay with my parents for a few weeks to rest and recover. I think that just eliminating the stress of having to go to work had been huge. Waking up, taking my time, putting on pjs, and hopping in the bath again if I need to, not dealing with rude neighbors complaining about my water usage etc has made a huge difference. My parents are amazing and c is getting a break too.
I cannot believe it has been 100 days! I thought I would have Been much further along with a lot more progress…. But I am definitely in the worst of it! My skin is still changing. It seems to go from white to red to purple a few times a day! I snapped some pics of my clearish skin. In the last hour it has already gone red/pink. Everything is still shedding scabby and dry.
I have had two major improvements.. My temperature has improved…I got the chills all the time in the beginning. Also, I’m definitely less red overall.
My back is the weirdest thing… In the beginning it didn’t give me much trouble… Now it seems to be the worst area. It is constantly oozing, itching shedding. From my waist to my neck is certainly the worst these days… Red itchy irritated oozy shedding.
Red swollen face and irritated neck.
Lets hope the next 100 days bring more healing!
I think I hit my rock bottom yesterday. Although from what I understand, you think you have hit the bottom, and then you find out you were wrong.
Yesterday i was still shedding the full upper body scab from the oozy weekend. I was at work and had to leave because I couldn’t deal. My whole body hurt- it felt like someone tore my clothes off and dragged me over a cement parking lot. At one point my arms were pulsating they hurt so much. I spent 3-4 hours in the bath and started sobbing uncontrollably because of the pain. I’ve never cried like that, there weren’t even any tears. Just kind of like wailing. Once I got out, I couldn’t wear a shirt because it hurt too much.
Today I feel slightly better but my face is weeping and I am still in pain. It is the office “Christmas lunch” and I don’t think I can make it. I leave on Thursday and I still have loose ends to finish up before my “leave of absence.”
Yesterday I was watching the coverage of the Sandy Hook shooting. It makes me feel guilty for feeling the way I do. There are such terrible things happening in this world and I am lucky to be alive. I am lucky I don’t have something terminal or even chronic. In 9 months I will most likely be almost healed.
This weekend brought more ooze and more red. My back chest and shoulders oozed like crazy yesterday and last night and this morning scabbed over and peeled off. The rest of me is so-so, more red than last week after my massive shed, but not as bad as my back.
Right now it hurts to wear shirts or move my arms. My armpits are split open again and my back skin is sore from the scabbing and peeling.
I feel like my skin is really changing. The first month my skin was up and down and not super red with two clearly defined flares. From about the 4th week to 11th week my skin was in a constant red shedding oozing itchy mess, but stagnant, not improving or getting worse. At 11 or 12 weeks, I started getting breaks, but the redness and ooze got worse on the bad days. And I had the first real huge shed. It seems like I’m getting the major ups and downs that some people get. This red and oozy flare was a little shorter than the last one and less extreme. Hopefully each one will continue to get less severe.
There are also about 5 spots on my head starting to sweat, so that is promising.
This weekend I spent on the couch watching tv, suffering and resting. back to work tomorrow.
Happy healing skin friends.
Today I get my 3 month chip. It has been thirteen weeks/three months. This week I chopped off my hair because it was falling out and getting matted. It was so hard to deal with because I had to wash it everyday. I feel liberated and so happy I did it. It sucks that I can’t cover up my ears/neck which have a lot of crust/flaking, but whatever. I think I have stopped caring about what I look like completely.
Here is a picture of my hair cut (taken yesterday). This is the virgin picture (without the Instagram filter) so you can see my red face.
I have been doing better the past few days. After my terrible day on Monday with the insane shed, my skin hasn’t been red (minus my face). I’ve been itchy and dry as the Sahara, but I’ve been functioning more than I have in a while. Today my skin started burning and stinging and I feel freezing/hot at the same time. I think I’m going back into a flare. I wonder if now that I am progressing, my flares will become more defined between terrible red oozing days and dry pink days.
I go home to see my parents next week and am considering staying an extra week or so to give everyone here a break from me and just relax and try to heal a little bit.
Anyways, the last three months have been hell but I have made it through! I wouldn’t have made it without Chalon. She is my number 1 and has been the most supportive person and has been tirelessly caring for me and trying to keep me together. My mother is number 2. I know it is so hard to see me suffering but it means so much that she is on board and supports me through this. Number 3 (a tie) goes to two close friends, Kelley and Cathryn, who have taken the time to talk to me everyday or a few times a week and understand what I’m going through. Cathryn has even taken it upon herself to read and do research on TSW/RSS. This is a very lonely existence.. once you drop out of life, people forget about you. That is something I have never experienced. I think all of this is just too much for people to handle. And there are days when people have called me or wanted to come by and I feel/look so terrible I can’t handle it. I can’t wait until I’m better and I can see people and go out and be a real person again.
At this point, I am trying to amp myself up to get through the next 3 months. I expect that I will suffer probably for 2-3 more months before I see significant improvement. Most people in the ITSAN group have their turnaround at 6 months. I’ve read a lot of people say their fourth month is the worst.. I’m glad I’m going home and taking a few weeks off from work so I can recharge and get through it. I’m feeling so burnt out right now with trying to feel strong and get through the day.
Happy healing skin friends!
Today I feel like I can and will make it through this. The last few days really knocked me off my feet and other than my recent hospitalization, I felt physically worse than I have ever felt. Emotionally, I must say, I felt the worst than I have ever felt. I won’t lie, the past few days I was taken to a very dark place and had thoughts that I couldn’t make it and that I wouldn’t make it. But today, I know that I will.
After my insane shed yesterday, I thought I was done shedding for a little bit. Little did I know.. my legs and arms would have another insane shed. This morning, as I was driving to work, I pulled up my sleeve and a scabbed layer of skin coming off. When I got to work, I went to the bathroom, pulled down my pants, and saw the same thing covering my legs, even on my butt. It is just unconceivable that this much skin can come off me… where does it come from???
Anyways, tonight my skin is nice. Still pink all over, a little red in some places, a little cut up, a little dry, but smooth. So smooth. My armpits are still split open, which is so painful, but they are healing up.
Anyways here are some pics I took tonight.