TSW -Month 8 – Roller Coaster!!!!!!!!

Month 8 of TSW has been a whirlwind.  It started out great and then she was slammed!  I guess it is to be expected but that doesn’t make it any less painful for her or for us to see.

We started the month with a trip to Disney World.  We had to cancel all our vacations earlier in the year because of tsw and were hoping that she would be ok for this one since she would be in month 8.  We were lucky and she was fine.  Our doctor recommended that we get a wheel chair for her so that she doesn’t over exert herself.  We tried to do without the wheel chair the first day and she was fine for a while but she got so overheated, started to sweat and got the crazy itchies.  All I could think was “FUCK!!!!  Why didn’t I listen to the doctor?”  Luckily I brought an emergency stash of antihistamines which helped once they kicked in.  We also took her scarf and soaked it in cold water and put it on her forehead and on the back of her neck to quickly cool her down.  Once she cooled down she felt a little better but wanted to go back to the room shortly after that.

The next day we got a wheel chair and a Guest Assistance Card and that helped a lot.  The Guest Assistance Card basically said that she needs a shaded area to wait.  For those of you that don’t know Disney World, they have Fast Pass lines.  Most of the people at Disney allowed her to go on those lines so that she didn’t have to wait long.  That was extremely helpful.  I don’t know how the hell we will ever go back and have to wait on lines!

It was brutally hot the whole week but she was such a trooper.  When we went to Hollywood Studios she did not want a wheel chair and she did fine.  It is much smaller than the other Disney parks so it was manageable.  The highlight of the trip (for me) was that she went in the pool!  She was super scared but she did it.  It stung at first but then she was fine.  I was so happy that I wanted to cry.  She missed swimming so much and it warmed my heart to see how happy she was.  She was going down the water slide and having a blast for over an hour.  Then the itch hit so we got out.

Swimming 2

Overall, the trip was a success.  She got to go on every ride she wanted to (she is a coaster fiend) and was finally tall enough for Aerosmith’s Rock ‘n’ Roller Coaster.  We stayed at Animal Kingdom Lodge, which she loves.  She swam and she had a great time.  Everything was great.

Bacterial infection hits! We were home 2 days and next thing you know she can barely get out of bed.  She didn’t have fever but she was exhausted.  I thought maybe she pushed herself too much but it was probably just a flare.  We have never really been able to tell what a flare is because she is always so raw and itchy but this was really bad.  She barely moved so she missed a bunch of school again.  She was sleeping about 15 hours a day and was so uncomfortable.  She could barely walk.  We carried her from her bed to the couch, to the bathroom and back to bed at night.  She kept saying that her skin hurt and that it felt like it was tearing open.  The only thing that helped was Motrin and sometimes it wore off way before it was time for her next dose.

Elbow 9-29-13Knees 9-25-13

It turned out she had a bacterial infection.  I wouldn’t have even taken her to the doctor because her body was doing a good job of fighting it.  I could see awful areas clearing with nice skin underneath but it went to her eye area and I didn’t want to play around with the eyes.  Be prepared these pictures are not pretty (especially the messy hair!).  Here is her eye area and forehead area.

Forehead 9-22-13 September 22nd not bad at all

Forehead 9-25-13 2September 25th – 3 days later her eye brows are oozing and crusting up.  The white is zinc oxide.

Forehead 9-25-13September 25th evening – it is clearing up without anything other than zinc oxide and coconut oil.

Forehead 9-26-13 2September 26th it is clearing but it is now raw from the crust cracking off.

Forehead 9-29-13September 29th before starting antibiotics

As you can see it was clearing up on it’s own but it started to clear on the eye brows and got closer to the eyes so we took her to the doctor.  It was a bacterial infection – No shit!  I hate antibiotics.  I truly believe that your body can fight off most infections without them.  BUT we really didn’t want to risk this moving closer to her eyes so we gave in and started her on antibiotics and boosted up her probiotics to counter act it.  Her doctor actually suggested it, but we had already planned on doing it.  It is nice to know that her doctor doesn’t take the antibiotics lightly.  

SIDE NOTE: Did you notice that she has some eyebrows growing back?  If they weren’t so crusty I would have counted them.  I never thought I would love body hair!!!!!!

Here are some pictures of the lower part of her face.  I swear her body fights this shit naturally.  It amazes me every time I look at the pictures.

Nose and Mouth 9-24-13 September 24th Not so pretty but the worst is yet to come.

Nose and Mouth 9-25-13 2 September 25th – What the hell?!?!

Nose and Mouth 9-25-13 September 25th evening – It is starting to go away.

Nose and Mouth 9-29-13September 29th – It is no longer yellow and crust and the skin that is peaking through looks very healthy.

I wish I had pictures from the days in between but she was not happy about me taking pictures.  The poor kid would not even look at herself in the mirror.  It broke my heart how sick and sad she was.

By the time we started the antibiotic her body was doing a great job of fighting it anyway.  I do have to admit that the pain went away after the antibiotics were started and her energy started to come back by the 3rd day.  Now we just had to get her back to school and caught up on her schoolwork.

SCHOOL: She started school after missing a total of 3 weeks.  Luckily her tutor is amazing and has really done a great job of keeping her somewhat caught up.  She was only able to have the tutor 1 out of the 3 weeks but she will continue to come until she gets caught up or they stop sending her.

For those of you in the US check with your state to see what you are entitled to.  We didn’t know that we were entitled to 1 hour of tutoring for every day that she misses.  She missed 23 days last year and we had no clue so we lost all that time.

END OF MONTH 8: We went apple picking and she was amazing.  She was exhausted afterwards and slept the whole way home but she climbed trees (got yelled at from the groundskeeper) and ran around with her friends and had a great time.  She even managed to make it through school for 1 full week but boy did it wear her out.

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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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6 Responses to TSW -Month 8 – Roller Coaster!!!!!!!!

  1. oksana says:

    wow what a strong girl.Thank you for the great post, for the last 8 month we are following each other child progress and it make s me so happy watching your girl getting better.I do not know how you do it:vacation, school. After reading your post , I am wondering if I should push my girl more. How are you doing that. I mean make her go to school, see her friends, just go out of the house?Hope we can all meet one day and just have FUN, without worrying about skin, itch, and heat…

    • tanddi says:

      I wish I could take credit but it is all her. She wants to go to school because she wants to see her friends. We gave her the option of home school until this was all over but she said No Way! She probably just didn’t want me teaching her. I am not a very good teacher. It would be great if we all lived closer. It would help the kids to see others like them, plus we could all use the support. Thank God for the internet or we would feel so alone!!!! I think for you, having a teen is so much harder. She is dealing with the regular teenage problems on top of this. It has to be overwhelming. Maybe some gentle pushing could help but when I was a teen I wanted to hide under the covers for any silly problem so that might be what she needs right now. I am sending you both big hugs.

  2. ahfaye says:

    Thanks for the update super awesome mum! i’m so happy for ur daughter and u that she enjoyed the swim much. it warmed my heart too! i hope she gets better day by day and can enjoy all the things all over again. much love to u guys xxx ahfaye

  3. Dan says:

    Hi, just read most of your blog. So sorry to hear this has happened to your daughter. I’m afraid this may be happening to millions of unsuspecting people every day. It just pisses me off beyond imagination that these doctors are so uninformed about topical steroids. I’m writing because I feel there is information out there that you should be aware of, especially on the effects of moisturizing. Please do yourself a favor and review my blog when you have time. Especially the comments from other people who have tried tsw without moisturizing. My blog is relatively new and I don’t have a lot of comments yet, but after reading my blog I think you will know a much better way to help your daughter. Please feel free to link my blog to yours too. Good luck!

    http://topicalsteroidsurvivor.blogspot.com/

    Also, be sure to review the Skin of Rose blog on the recent Japanese conference if you haven’t already. Highly informative!

    http://skinofrose.blogspot.com/2013/09/tsw-event-report-from-japan.html#comment-form

    • tanddi says:

      Thanks Dan. I will check you blog out and link it here. We tried not moisturizing a while back and her skin was cracking and bleeding. She wasn’t able to straighten her legs so we started using coconut oil again and vaseline on the really stiff parts. We don’t use vaseline anymore. She prefers the white petroleum jelly or Non-petroleum jelly. She goes a few days without using anything pretty often but then seems to need something because the skin on her joints gets really stiff. We use the coconut oil more as a way to keep infection at bay since her skin is so open. I will definitely read your blog so I can learn more about this. Thanks!

  4. Dan says:

    tanddi, you’re very welcome! I understand the cracking and bleeding all too well. But, you have to get through the first couple weeks of no moisturizers before the skin can heal those open wounds completely. Many try it for a day or so and go right back to moisturizing due to the increased pain, not realizing if they just had toughed it out for a couple more days, they would be in a state of bliss compared to the state they were in prior to MW. Most who have done tsw have used moisturizers throughout most of their recovery so there isn’t a whole lot of information out there yet on this. Or, should I say information available on Itsan, where most people go to for information on tsw. MW is severely painful for the first few days but well worth it. After a week or two, when the old skin peels off (don’t help it peel), any remaining or new skin splits or oozing areas can be healed with continued daily dead sea salt baths and evening applications of Tea Tree oil and/or witch hazel. Sun exposure too if you can get it. You will find that she will be much more comfortable and no longer at high risk of infection as a result of not using moisturizers. I believe she will also heal a tad bit quicker as well by supporting the skin. I cover all of this in much detail in various posts in my blog. Others are posting the same results as I had too. I hope you find it useful.

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