One Year down. One FUCKING Year of HELL! I know that I should be thankful for the progress that I have seen in my daughter’s skin. I should be thankful that she will be cured and that this isn’t a terminal disease. I should be thankful that my daughter is able to go to school and spend time with her friends and not in a hospital. I am thankful for all of those things but I am so angry and tired that I just can’t see that most days.
If you are just starting TSW please don’t let this discourage you. In some ways, this is the best thing that ever happened to us. We finally figured out why our daughter’s skin was suddenly getting worse. We could tackle this problem instead of having no clue what the problem was. We now know why her skin was deteriorating. We have something to work towards.
So, where are we now? The itch is insane at night – every night. Sometimes antihistamines help her sleep but sometimes they don’t. We try to use them only when absolutely necessary. Certain antihistamines don’t help with anything. I don’t think that anything has ever touched the itch, they just make her comfortable enough to sleep or they make her drowsy.
Her skin is showing improvement. She still has the same problem areas – Face, Neck and Lower Back. Her wrists have been bugging her a lot the last couple of weeks. She rubs them and then the skin breaks open. They are much better than a few months ago though. Her hands and ankles as still pretty thick and dry but are so much better than they were. We have seen slow and steady progress with some set backs thrown in. Her energy is better. She said that if her face looked better she would go back to gymnastics. She doesn’t want to go to the gym looking the way she does. I can’t say I blame her. She has been more active. She has even been wearing her leotard. Other than bath time, dressing time and the one time she swam at Disney, I haven’t seen her skin exposed since February of 2013.
The air only bothers her oozy spots, which are only on her face and neck now. She is still super dry and flaky in the problem areas. She said that her skin still hurts all the time, which makes me very sad. The end of this month has brought us terrible sleep and some depression. She has been so sad that it breaks my heart. She is so uncomfortable with the way her face looks and I am just at a loss. Ever since the set back in Week 33, her face has not been doing well. One day it will be bright red and the next day it will be fair but super dry and flaky. The oozy spots are getting smaller but she rubs so hard sometimes that she creates new ones. We have tried using apple cider vinegar on the oozy spots on her face to see if maybe that will help a little. I don’t notice a difference since we starting doing that but it certainly isn’t hurting. I think she just needs time and rest. ARGH!!!!! I just want to scream!
So here are some pictures to show where she was in this 12th month of tsw. I am not sure if you can tell but her arms, legs, back and feet are getting back to her old color. Our daughter is half Jamaican and half German, so she used to have a beautiful light caramel complexion. We haven’t seen that color in years but it is starting to come back and I forgot how gorgeous it is. Those areas are very soft and smooth.
Week 52Exactly 1 year
I still can’t believe that it has been a year and I can’t believe that I am going to say this, but it went faster than I expected. I think because I was preparing for the worst, it seemed faster. The days were long and it seemed endless but we survived. I don’t know if that makes any sense. Considering how little sleep I got in the past year, I am surprised if I ever make sense. The frustration is setting in though. My daughter just wants this to be over already and so do I. My husband is angry and frustrated that he can’t help her. We all seem to be at each others throats lately. I just wish there was a way for me to speed up her healing. We no longer try anything new though because we know there is nothing that will speed this up. We just keep doing what makes her comfortable and hope the next year brings us a completely healed daughter.