TSW Month 12

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.

Forehead 1-28-14Week 51

Forehead 2-7-14Week 52

Forehead 2-11-14 Exactly 1 year

Nose and Mouth 1-28-14Week 51

Nose and Chin 2-7-14Week 52Nose and Chin 2-11-14Exactly 1 year

Neck 1-28-14

Back 2-8-14

Back 2-11-14

Chest and Stomach 2-11-14

Shoulder 2-7-14

Shoulder 2-11-14

Arm 2-11-14

Arm 2-8-14

Hand 2-8-14

Hand 2-11-14

Wrist 2-11-14 2

Legs 2-11-14

Back of Legs 2-11-14

Legs 2-8-14

Back of Lower Legs 2-11-14

Feet 2-8-14

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.

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About Junk Lover

I am a lover of junk. I love to craft and sew and re-purpose old crap. My mind is a scattered mess with too many ideas running through it so I don't always focus and get my projects done. BUT, I usually have fun trying.
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20 Responses to TSW Month 12

  1. Kayla's parents says:

    Thank you so much for sharing. Our Kayla (turning 8 in April) is about to finish her first 7 weeks of TSW but thanks to people like you it helps us to prepare us for what is ahead. After much consideration we decided to keep her in school as well, she dreaded the thought of having to repeat the school year more so than the alternative of staying home. Her skin is very similar as your daughters, lots of scratches and bleeding everywhere, dry oozing on top of her lip, and the thickest rash is on top of her foot. I know what you mean about night time being uncontrollably itchy. Bathtime she screams murder, and she goes through depression at night and can’t even look at herself at all.

    Much healing thoughts to you, thank you again for sharing. You’re right it helps us get through it all. Stay strong, we will pray for your daughter.

    Best wishes, Kayla’s parents

    • tanddi says:

      My daughter won’t look at herself either. She won’t look in the mirror and when she does accidentally catch a glance, she gets very upset. Bathtime was horrible for a while but is much better now. Baking soda helped with the itch in the bath but I also think that there is a time when the water is just painful. We would give her Motrin before the bath at that point and it helped a little. Hopefully that phase will pass soon.
      I really hope Kayla has a mild withdrawal.

  2. ahfaye says:

    1 year!!! congratulations!!! it’s great ur daughter has improved. it’s nice seeing her origin skin colour right! hold onto those victories you guys have fighted so hard, u will eventually win the battle! hope school is still going well for her. i know it’s hard on her self-confidence and self-esteem but look at the long term gold pot. ur daughter will be such a amazing strong women once she is out of this TSW shit. my toddlers were driving me nuts these few days, i just couldn’t handle the littlest things, i was losing my cool a lot dealing with TSW on top. i knew i had to control my emotions as my toddlers were just being toddlers! then i came across this article. it struck me deep and a lot of the quotes in the article related to TSW somuch. please have a read when you have time
    http://www.mindbodygreen.com/0-10250/11-things-i-wish-every-parent-knew.html

    • tanddi says:

      Thanks so much. She missed a lot of school again at the beginning of the month but the last week and a half she has been so much better. I don’t know how you take care of children while going through this yourself. I don’t know that I could do it.
      What a great article. They really hit home.

  3. GAh! She is so strong, YOU ARE SO STRONG! Don’t forget to appreciate yourself in this mess! I hope she continues to get better by leaps and bounds!

  4. Nicole says:

    Your daughters strength amazes me. I want to stay positive but this isn’t fair…you have come so far yet it is still heartbreaking, frustrating and upsetting that she has to endure more of this. You guys have been so tough and I’m praying that this is the end of TSW and this year brings complete healing. I’m glad you are looking at the bright side, and thankful for people like yourself and your daughter who are leading the way. She’s brave like her mama!

  5. Alisa says:

    Wanted to check on your daughter….mine is also going through this and I always check on the other girls her age. 🙂 She is in our thoughts 🙂

    • tanddi says:

      Thank you so much. She is doing much better, getting back to her normal activities. Her skin still has a long way to go but it is slowly improving. How is your daughter doing?

  6. Chi says:

    She is such a brave girl!!! She inspires so many out there. Thank you for all your effort, I think you are both are amazing! I cannot wait to see her all healed one day in the near future!! x

  7. Esscee says:

    Thank you for sharing your story….the ups and downs …the frustrations. It breaks my heart to see your little girl going through this. I’m going through tsw as well. Dropping a note to share that I’m using drwheatgrass shots and super balm as well as drinking fresh wheatgrass juice everyday which is certainly an acquired taste. It seems to work for me where it shortens each flare and helps normal skin peek through faster after each flare. It doesn’t stop tsw but to me it’s been my savior together with extra virgin coconut oil. I’m also thinking of getting dr.fukaya’s hyaluronic acid in due time( cost factors) to help with healing.Wish your little warrior and the rest of us quick complete healing.

    • tanddi says:

      I am so glad that is working for you. I haven’t been on here in so long. I hope you are doing well. TSW is such a struggle but we will all get through it.

  8. nancy says:

    Hi!
    How about your daughter’s skin now? Hope she will be fine. I feel very sad for what she suffered.

    I am waiting for you new blog since there are so many same symptoms between your daughter and my daughter.

    Thank you a lot for you post!

    • tanddi says:

      I am so sorry I didn’t respond sooner. I just found some old messages. I haven’t updated the blog in so long. I really should get on that. She is just starting month 26 now and is living a normal 11 year old life now. She has some bad spots still but nothing that stops her from doing what she loves. She doesn’t have to take antihistamines much anymore, just occasionally now. She still doesn’t like to put anything on her skin except for her face.
      How is your daughter doing?

  9. Rosemarie says:

    Tanddi,
    How is your daughter doing? your blog helped me so much when we were in the early days with my son.
    Rosemarie
    http://www.beyondtheitch.wordpress.com

    • tanddi says:

      She is doing much better but still not healed. I really need to post an update. Getting her to let me take pictures now is so hard. She is living a normal life now.
      I am so glad this helped. Seeing that others were going through the same thing really helped me and my daughter, especially at the early stages.
      How is your son doing?

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