I am 5 1/2 months off steroids. Tomorrow is 24 weeks.
I have had quite the wake up call. I have been feeling a lot better for about two weeks now. Since the big change happened, I’ve had a taste of what life is like. I’ve been working more, going out more, trying to help out more around the house. The old type A Leslie is starting to come out.
Yesterday, I had another 8 am appearance. I woke up at 530 to get my bath and Vaseline time in. I went straight to work when I was done and stayed until 5. 6 months ago, that would have been fine. I felt like the old me.. Moving too fast, trying to accomplish too much in too little time. I didn’t eat for hours because I didn’t have time and got really cranky as a result. That was a huge problem I had before all of this happened. And then, because I was feeling up to it, C and I went out to dinner. I felt great and was really happy to go out. But that was a really long day.
This morning I was not feeling good. My nerves were stinging and I was itchy. Yesterday I felt great. I was chatting with someone at work about it today. She said to me- “Think about how good it feels to feel good. Do you want to lose that? If you don’t slow down, you are going to get worse again.”
It hit me- all of the lessons I’ve learned about myself and my newfound emotions completely went out the window. I just wanted to get back into my life as fast as possible, completely disregarding my health again.
I have felt like everyone is controlling me and babying me. I’ve been very frustrated with C when she tells me not to get up and do things or when my boss tells me I need to leave the office. Obviously, I can’t be trusted to regulate myself. But then again, how will I ever learn how to know when to stop and slow down without doing it myself. Other people aren’t controlling me, the illness is controlling me. But, I guess I went into denial about the reality of my health. I started projecting on to other people, feeling like they were controlling me. It’s easier to just blame it on other people, rather than face the music.
So now what? I need to set up some boundaries. I need to cut back down to 25 hours a week at work. I need to only do one thing every weekend and spend a full weekend day resting. I need to let C help me. I need to know that my friends will understand if I can’t make it to their party. Just because I’m feeling good doesn’t mean I need to go out and overdo it. I need to find the balance between slowly rejoining the world and allowing myself to heal.
Finding balance has never been my strength. I’ve always been a person of extremes. But I am now at a crossroads where I must decide to make my health first.
To be completely honest, I am feeling spread very thin. Trying to work almost full time in a high stress job where I have a lot of responsibility in addition to keeping up with both of the ITSAN forums, my blog, responding to emails from people who have found my blog and have questions, starting to get exercise, starting to get some sun, helping out a home and seeing my friends has been too much for me. It has been really overwhelming.
So it’s time to take a little breather and get some rest and regroup. I’m still not sure what that entails. I am really glad that I realized all of this before I got myself into a mess like last time. I know I would have had my big flare in December no matter what. But I do feel like it was brought on by my refusal to slow down and accept the reality of the situation.
Anyways, I have some pictures from this morning. I’ve shed a few layers and my skin was looking good this morning. I scratched a lot after these were taken so as I write this, I’m not looking great.
Yes, that’s right folks. Another fully body red flare. The only thing spared so far is my face and neck. So hey, that’s a good thing.
This flare is so weird. After such a great Saturday, I was prepared for a Sunday of more activities. C and I took the dogs on a walk at around 12 and I wore a short sleeve shirt to get sun. We were making plans, but C had a migraine and wasn’t doing too well so we decided to take it easy.
Fast forward a few hours.. I looked down at my skin and thought “fuck! I’m flaring again”. I got progressively more red throughout the day and this morning I woke up completely red. I haven’t had a real red flare in quite a few weeks.. So I’m trying to get used to the idea. When I realized I was flaring, I panicked, got upset, yelled at C, cried for about 30 seconds and then gradually calmed myself down. So it seems like my hard work is paying off.
Today, I went to work for my average day of 6 hours. I sat with clients for two hours to prepare them for a hearing. I was uncomfortable, but surprisingly felt more comfortable than days when I’m not flaring. Maybe because my skin isn’t soooo dry. Or maybe the oils are coming back. Perhaps the flares are just getting more mild. Or I’m getting used to them? It’s all speculation over here. But definitely so far, this flare is pretty mild (knocking on wood).
Maybe this is my cycle.. 2 weeks on, 2 weeks off. I thought I was going to be one of those people who cleared up at around 6 months and then it comes back with a vengeance at 8 or 9. But maybe ill just have to deal with going through the cycle over and over again. Maybe it is easier this way.
The strangest thing happened to me this evening. I went to the grocery store in the center where I had my first big breakdown. I needed to pick up a few things.. Toilet paper..tampons..yogurt etc. I haven’t been doing much of anything at home so this is a pretty big deal… Especially because I casually stopped at the store after work. Until recently, my drive home consisted of me crying, hyperventilating, scratching all my skin and tearing my clothes off. I know most of my neighborhood and surely seen my boobs because sometimes they itch so much I just pull them out to get a good scratch on.
When I checked out at the store, the young female checker asked me if I liked shaving my head because her friend just did it and really liked it. For some reason, when I’m confronted without any warning, I get really emotional. Fighting back tears, I said “well I cut my hair off because I’m sick an it was falling out.” We had a conversation for a few minutes and in the end she came around the check stand and hugged me and told me that God doesn’t give us things we can’t handle. Well I’m an atheist, so I don’t believe in God, but I appreciated her kind words and the message behind them.
I took a picture of my legs just now in the tub. The first picture is my legs just yesterday. The second is from just now. It’s just so crazy how things can change soooo fast! I suppose that means things can get better that fast as well.
Yesterday was essentially a normal day minus the three baths, a few domeboro tags for a tricky oozy spot on my forehead, a few itchy panic attacks, and some nerve zingers.
I woke up, had my normal AM bath and my friend I havent seen since before I started TSW 23 weeks ago came by to give me a really funny book about unlikely pairings of animals.
I then went and met up with another friend and went for a short three mile hike and then hung out for a little bit. I got some sun on my arms neck and face which are the most improved on my body.
I came home, took a bath and THEN went out to dinner with other friends.
All of this sounds like a normal day. The most normal day I have had in 23 weeks. I just cannot believe it. It is so crazy to feel like I’m coming out of this crazy thick fog.
My arms look great. They are a teeny tiny but cut up but they are my red, the skin is soft, and barely any scales. They still look a little rashy, but compared to 2 months ago, this is a huge improvement. My legs are also looking good. They are still really itchy but I don’t cut them up as much and they only really scale after a bad scracth attack.
I am sweating! Just a little but it is great progress.
Every night, the nerve zingers hit me rely hard. Usually about 9 pm, I start getting deep deep itching in my back and face. If I give in and touch either, it feels like someone is trying to stab their way out. Sometimes it is more like a jolt that makes me jump. I start frantically scratching, physically unable to take my hands off my skin. I start hyperventilating and have to calm myself and take lots of deep breaths. C usually lightly rubs my back for hours. She is so sweet 🙂
I have very little ooze now. I don’t think my ears are oozing. My neck still oozes a tiny bit at night. And of course my shoulders and upper back but that’s another story.
My upper back and shoulders are continuing to be a pain. They are slowly getting better but we have to remember “first in last out”. The last place to flare is going to take the longest to heal and going to give me hell until the end of this. I still have a tiny crusty red spot on one temple, but everyday is shrinking.
Anyways, that’s what is going on over here. I’m so excited about the progress and changes coming! I’m still being very careful to not over do it as overextending myself has already shown to make me flare.
Bathtub pics because C has a migraine and is in b
Thank you for reading 🙂
My “homework” last week in therapy was to pick a future date when I am pretty likely to be healed and write about it. I chose March 2014, because I will be 18 months into TSW. Based on my usage history and age, I should be close to 100% healed.
So I’m sharing what I wrote.. (Sorry Mom about the sex part!)
It is March 2014 and I am 28 years old. I am wearing clothes that are not 100% cotton. I am wearing tank tops and shorts and even sandals on the random warm days we have! I M wearing black all the time. My hair has grown back and I don’t have to go out in scarves and hats.
I wrote about this yesterday but I had a little realization earlier today. Yesterday was the first time in probably 4 months that I felt like I was getting better. I feel like I am healing. I am still covered in TSW related stuff and my back is still red and oozy but I feel the progress. During the good times I’m a little uncomfortable, but it is tolerable. I can pretty easily go to work for 7 hours and be out of the bath for 8-9 hours. These are all huge things. I just feel better overall.
It feels like the good is getting better. The past month or so, the bad seemed like it was getting worse, but less frequent. But the good hadn’t really changed much in quite some time, if that makes sense. Now, the good periods, which are more frequent, are becoming better.
Someone on the forum wrote about the stages of grief. I think that I just entered the acceptance phase.
Part of accepting TSW is accepting the fact that although things are better for right now, they can go back to being terrible at any time. Also, we have to accept that we don’t know when we will be healed. All plans are completely tentative. I can’t really make any definite plans until I am completely better because I have no idea what will be going on with my skin tomorrow, next week or even next year. I’m working on developing a balance of realistic optimism with respect to my TSW. I need to be optimistic that things will get better and are on track. At the same time, I must understand that things could get worse and really accept that but not dwell on it or let it keep me from enjoying any of the good periods that I have.
Here’s a face picture with my newly buzzed head. My face is definitely clearing up.. even the little wet wound on the side is slowly shrinking each day!
Well, TSW is like a roller coaster and it never ceases to amaze me. I had a good weekend- I went to a graduation party (during the day) and went with C to get her hair cut. I was out of the bath a good 9 hours or so and enjoyed myself. Our hairstylist decided to buzz my head since it was turning into a major mullet with the bald spot on the top and the hair growing in the back. It is so funny how something like shaving my head would have devastated me in the past.. but now it doesn’t even bother me. Guess we have bigger fish to fry over here.
My skin has been pretty good the past few days. Yesterday I had lunch with C and a friend in the middle of a work day. My friend hasn’t seen me too much through all of this.. he saw me in the hospital in my first week of TSW, in November for his birthday and in January right after I got back from Texas. So everytime he sees me, quite a bit of time has passed and he has some pretty good insight into how I’m progressing. He said I seemed like my normal self yesterday, which is sooo great to hear! It sucks having people describe me as “not myself” “obviously super uncomfortable” “visibly in pain”. Thats not who I am and it SUCKS that is what I am projecting and that is my reality.
My upper back//shoulder area is still giving me hell. Still oozing every night and then scaling during the day. It is just so itchy so when I scratch the scaly stuff that is not yet ready to come off, it either bleeds or oozes. C has been taking pictures of my skin as I’m getting in the tub for my evening bath and they are quite different than the pictures I take in the morning fresh out of the bath. I’m working on saving them all and I’m going to post them so you can see what I “really look like” as C says.
My arms and legs are doing great. Sorry for the overkill on the arm pictures, but my arms have not looked this good in a really really long time!
Here is my wrist about 6 weeks in.. Look at the progress!!!
Today I feel like the first time in a long time that things are getting better. This morning I washed some dishes and cooked lentils.. something I haven’t felt up to doing in 5 months.
I know I will flare again and have to keep telling myself to soften the blow when the red does come back. People in ITSAN talk about the “first flare” which lasts the first few months of TSW and then the “healing period” which is after the nasty red, oozy stuff is over with. This is when we feel like our bodies are healing and making steps to repair all of the wrong that has happened. I think this is where I am headed.