Week 24: Redness, and Bumps, and Itching, Oh My!

5.20.13 Day 163: Arms are Flaring with a capital F. Red, itchy, dry, awful. Its like my skin decided to give me a break for graduation and wisdom teeth and is now back with a vengeance.

Right Arm

Left Arm, band aid is to cover where I broke the skin

and here is my neck which has been giving me grief lately

5.21.13 Day 164: I swear its spreading up and down my arm from the crease. Trying to stay in the air conditioning so that I can wear long sleeves :( To make it better, some complete stranger at work looks at me and says "omg you are SOOO tan!" Now if you have seen a single one of my pictures you would know that I am as white as it gets and this was obviously a poorly executed insult on my appearance. So I am dealing with a flare, my face is STILL swollen and hurting, and now I have this girl making fun of me to my face. You really just can't win with people. Well girl that is so tan its gross, being white means that I'm NOT RED, so screw you. K, that was my rant, I promise I'm done. :)

upper right arm

lower right arm

lower left arm

On a happy note: My Dad's new book Sometimes Jennifer is available in paperback or download on Amazon! I am only about halfway through so far but I can vouch that it is awesome. Here is the link:
http://www.amazon.com/Sometimes-Jennifer-Terry-W-Combs/dp/1468147285/ref=sr_1_1?ie=UTF8&qid=1369200823&sr=8-1&keywords=sometimes+jennifer

5.23.13 : poor arms... 

Also here is a wonderful video that itsan just released of Dr. R discussing topical steroid addiction vs. eczema: 

http://m.youtube.com/#/watch?v=Y3Q5REkAKck&desktop_uri=%2Fwatch%3Fv%3DY3Q5REkAKck I will embed the video once I'm on a real computer instead of my phone :) 

Song of the Week: "Come on skinny love just last the year. Pour a little salt, we were never here...I tell my love to go and wreck it all. Cut off all the ropes and let me fall. My, my , my, my, my, my, my, my, but right in this moment, this order's tall. And I told told you be patient, and I told you to be fine, and I told you to be balanced, and I told you to be kind."

Week 23: Wisdom teeth are for Chumps

4.12.13 Day 115: My sister, mom, and I went out for pedicures to celebrate mother's day. So thankful to have itch-free, redness-free, and elephant skin-free legs! Now for my arms and neck to heal.

Mother's Day Pedicures :)

 4.14.13 Day 157: Hands are looking less red and more dry/wrinkly. Yuck :(

Right Hand

Left hand

 5.15.13 Day 158: Wisdom Teeth Removal Day! I mentioned in a previous post that I had to request a steroid-free surgery (there would have been steroids in both the IV and the post-surgery prescription). The surgeon said it was not a big deal BUT I would probably have a lot more swelling with out the anti-inflammatory steroids. This VERY unattractive photo of me post surgery does absolutely no justice to how swollen I was. I looked like they took out my teeth and replaced them with golf balls.

5.16.13 Day 159: Still on a diet of smoothies and mashed potatoes...but skin is hanging in there!

5.17.13 Day 160: Still extremely swollen, not much chewing going on.

5.18.13 Day 161:  Real food today! I'm so hungry. The swelling has gone down on one side and turned into a nice yellow bruise on the other.

Song of the Week: "Your hope dangling by a string, I'll share in your suffering to make you well, to make you well. Give me reasons to believe that your would do the same for me and I would do it for you." - Gone,  Gone, Gone, Phil Phillips

Week 22: Graduation!

5.6.13 Day 149: Wrists and hands are flaring. They are red and covered in tons of bumps. The skin feels thick, leathery, and itchy, but hurts when scratched. The wrinkling when I flex my wrists is painful.

5.7.13 Day 150(!!!): Hands have toned down SLIGHTLY, but the crooks of my elbows and forearms are flared with the bumps too. I had to pull out my long sleeve shirt that is tight at the wrists so that I could't scratch in my sleep. I haven't had to use this in quite a while. :( The pictures really aren't doing the bumps on my arms justice.

5.9.13 Day 152: I graduated Cum Laude from Arizona State University with a B.S. in Tourism Development and Management, and a certificate in Meeting Planning and Convention Sales! So thankful I did not let withdrawal push my graduation back a semester. The previous hand/arm flare had also faded away by this day :) Also, wore makeup and didn't die!

Look at that amazing flake/redness free face!

Started itching in the million degree Arizona oven 

5.10.13 Day 153: Went to watch Ethan graduate this morning (Cum Laude, B.S. in Biochemistry and minors in Biology and Antrhopology! I'm so proud!) Then I went into a CHLORINE POOL and DID NOT DIE! Just a little burning on my forearms and some flaky dryness after. Then, I wore makeup for the second day in a row! This would have never been possible at all during the last five months. It was a day full of milestones. :)

Photo evidence that I did indeed get into the pool

if you look closely, you can see that my hands are still super wrinkly 

5.11.13 Day 154: Wore makeup for the third day in a row and my skin was fine. This is a new record.

Song of the Week: "But she learned to day, but she learned to dance, you can learn to dance, in this world when there's no tomorrow" - Learn to Dance Andrew McMahon

2,000 views and starting month 6, here's my advice

My Advice for anyone thinking about withdrawing from topical or oral steroids:

• Do it, start today, don't wait. Honestly, there is no good time for withdrawal, and the longer you wait, the worse it is going to be. 
• Don't feel pressured, stay strong. Your doctor may try and pressure you, talk down to you, or guilt you into using steroids again. Your friends and family may not understand or full believe/support what you are doing. Stay strong, you know that this is the right thing to do. 
• Take a picture of all of your steroids so you can reference the name/potency, then get rid of them. If you were on a diet you wouldn't leave chocolate cake lying around, so why would you keep your steroids. You will be tempted. Take that temptation away. 
• Document your experience. It may be painful to see yourself in the mirror, let alone in photographs, but you will be happy that you have them. Take pictures of yourself before withdrawing (areas with and without eczema) and often through the withdrawal process. I regret not having day one photos, or photos from when I was at my absolute worst. You really do forget the severity of everything as soon as you are feeling/looking better so it is nice to be able to go back and see. 
• Join the itsan google forum and facebook group. Having a support system full of people who completely understand what you are going through makes a world of difference. 
• On that note, do your research. Read the research on itsan.org. Read blogs. Understand what is happening to your body. It is a lot to take in at first, but will make more sense as you go along. 
• There is no timeline, don't stress if someone on the forum has a flare at two months and stops oozing at three, and your symptoms are not the same. Not everyone has the exact same symptoms (I only oozed a little, while others a lot, and some not at all) and everyone is on their own timeline. Just stay in the moment and know that you are going to be a healthy, active person with great some day soon!
• Finally, don't buy into the extra "stuff" (expensive supplements, special diets, etc). There is no way to speed this up or make things happen. Your body will heal on its own, on its own schedule. Do what makes you comfortable and happy in the moment. If that means staying in bed and eating only Doritos and queso dip for a few days, then so be it. Don't beat yourself up about it. Although, if you can, rest and healthy foods will give your body the energy it needs to heal. 

                Happy Healing! Love, 

                      Taylor

Week 21: Feeling Close to the End :)

4.28.13-5.4.13 Day 141-147: 

• Face: gets visibly dry less and less often, forehead, eyelids, and cheeks less often than around mouth. Current dryness is only visible up close :) The redness on my eyelids has faded to a light pink and they do not feel as raw anymore. 
• Neck: not very dry, just itchy. I can fully turn my head in all directions but it makes my neck itchy and uncomfortable. I am using shea butter and taking Atarax at night again for this. 
• Arms: My arms have changed a ton this week. I started using a new tanning lotion (which did not burn on my skin at all! Woohoo! This would not have been the case a month ago.) Anyways, I think I was allergic to something in it because I had little raised bumps all over my arms the next few days. This could be tsw related but this has happened to me in the past with tanners so I'm going with that. After I switched lotions, the bumps faded away but now I have little red dots where I scratched the bumps. The creases in my arms have gone from just redness, to pink/dry/flaky/itchy. I'll consider this progress. 

Still not wearing makeup every day but I think I will have that option soon. At the gym I have to rinse off my face and put on lotion mid workout or else I feel dry. I am using shea butter only on my neck/face/creases of arms/hands and everywhere else I am using Johnson and Johnson Oatmeal Baby Lotion (not sure of the official name). Other than being a little itchy in a few places, tsw is no longer intruding on my life :)

Left Arm

Right Arm

Eyelids are less red

Hands are getting better but still wrinkle when bent

Song of the Week: "We were dancing with the ashes falling, we were singing by the open flame. Let it burn, let it burn, Tomorrow is a new day. The wave comes sweeping, the cold bloods sleeping in your veins, your veins, after the fire. The sun came crashing through a cloud so black and full of rain, of rain, after the fire. I swear one day you will forget them locking us away, away, after the fire." After the Fire - Andrew McMahon 

Week 20: Just Another Week

4.21.13 - 4.27.13 Day 134-140: Not much to report this week. Skin is looking less and less red. My arms were doing particularly well on the day I took these pictures. The creases have normally been more visibly red/pink.

Starting to look normal in between dryness cycles. Notice the lines on my neck still 

Face is looking less and less like a TSW face

Eyelids are obviously still a problem

Right Arm

Right hand is slowly improving

Left Arm

Left hand, much less red, still a bit wrinkly

Neck is still a bit pink and has visible crease lines

Week 19: Did you know that NJ has a state dinosaur? It's theHadrosaurus!

4.14.13 Day 127 - 4.20.13 Day 133: This week is one big mash-up because I was too busy vacationing in NY/NYC with my Dad to make any detailed notes :).

This week I: 

• Wore makeup...A LOT...and LIVED!!!
• Used the same lotion that normal people use (aka jergens) and only used the nice shea butter on my face/neck 
• Met with the wonderful Jonathan Root to film an interview about my experience with topical steroid addiction/ withdrawal. 
• Went a whole week without taking any Atarax before bed :) 
• Only started having skin problems at the end of the week. This was probably due to drinking copious amounts of coffee/beer and no water the day before. I woke up the next day dry, flaky, and uncomfortable. 

Here are some pictures from the week:  

Setting up for my interview for itsan with Jonathan Root!

Giant coffees and ham and cheese croissants. Breakfast of champions 

With makeup you cant even tell that I'm still withdrawing!

At the Jersey Boys Show