So, Friday I woke up not feeling quite right. On the way into work, I broke into hives all over my arms, legs and back. I got into the office and tried to pull it together, but I had the worst, most intense itching I have ever experienced. I went into a full blown panic attack in my office. I was screaming and crying in my office with the door shut. My boss had to come in to console me. How embarrassing.
I had a really important training for a position I have taken in my local bar association. I knew I couldn’t miss it. I went home and took a 20 minute bath and then put my clothes on so that I could go to the meeting.
I took the rest of the weekend easy. I still felt off on Saturday. And then BOOM, I turned bright red all over my body. The itching went to about an 8 out of 10. Red sleeves were back. At least I didn’t really ooze – just a little from my neck.
On Sunday, I stayed in the whole day. I don’t think I went outside once. C and I just watched 7th Heaven (horrible I know).
Today it is still raging. I thought it was going down, but I don’t think that’s the case. At least I’m not oozing, and my back actually seems to be the best part on my whole body. What a change! I am back on vicodin unfortunately.
Hopefully this one won’t linger too long.
Hello fellow skin friends and allies,
Things are steadily improving over here. I did have a really dry day and lots of shedding yesterday, which hurt a bit, but I really can’t complain. I’m still ooze and flare free.
I want to talk a little bit about mental health today. I’ve talked about my own struggles with depression, anxiety and the intense feelings of despair throughout my withdrawal. The withdrawal takes a lot out of us both physically and emotionally and there are days that we all feel so beaten down. The endless days of worsening or stagnant flaring takes its toll. We get angry at everyone- doctors who prescribed the steroids to us, our friends and family who are not supportive, the doctors who treat topical steroid withdrawal for not coming up with a better solution, other people going through topical steroid withdrawal who might have different opinions than us on diet, supplements, etc. The list goes on and on. I have been really angry at myself throughout this withdrawal because I knew steroids were bad and I questioned them, but I went against my better judgment and followed my doctor’s instructions to slather the steroids all over me. At this point, it doesn’t really matter what happened. There is only one way out of this addiction, and that is cold turkey withdrawal. I wish that there was a way to make it easier. Unfortunately, we have an iatrogenic illness that is not recognized by the medical establishment. I think things are changing though. Even the National Eczema Association (who is funded by steroid manufacturers) is acknowledging that long term steroid use may cause addiction. More and more people on the forums are talking to doctors and changing their minds. Some day, we will have warning labels on steroid creams. But for now, we have to work hard every day to change the way eczema and other skin conditions are treated.
Back to mental health.. I think it is really important that we all have someone to talk to when it all just gets too much to handle. I’ll be completely honest here- at my worst, darkest moments, I thought I couldn’t make it another day. There were days when I screamed, cursed and sobbed and wanted to just fall asleep and never wake up. I started seeing a therapist to help me cope with the intense emotions I was experiencing. I highly recommend this to people. I had to stop for financial reasons as my insurance wouldn’t cover it. But the 5 sessions I had with the therapist gave me some really great coping skills. I started meditating, reading Buddhist philosophy, and focused on my inner strength again. I think I have seen the hardest times, but I’m sure I have some hard days ahead of me. And I lived through the worst days, so I know I can face whatever comes my way.
If you are in the throes of withdrawal, I just want you to know that these feelings are normal. I’m pretty sure every single person going through withdrawal has felt them. If you ever need to talk, there are many of us who have been through some really bad days who can talk to you. And therapy can be super helpful. So take a deep breath, remind yourself that you can get through this, and if you need to scream and curse, go for it. We all have to do what we need to do to get through the hard days.
Hang in there skin friends. We are all going to see better days sooner than later.
I’m sure this video is already making the rounds on the TSA/W blog circuit, but I wanted to share it as well. Check it out!
Things are rapidly improving here. I’m not deluding myself into thinking I won’t flare again. I know that I will flare again and I keep reminding everyone else around me that I will. I think I will be devastated when I flare again because I am seeing so much progress and it will really suck to see it all go out the window again. But at least I am seeing the healing before my eyes and when I flare again, I know that it can and will get better.
My biggest update is that three nights in a row, I have worked really long days (10-11 hours.. my average hours before TSW), and HAVE NOT HAD TO TAKE A BATH. I have been taking two baths a day for at least 5 months. For a long time, I was taking 3+ baths a day minimum and I finally got down to two a day. Now I am at only one bath a day! This is huge! It might not seem like much to you all, but the bathtub has been my best friend but also my torture chamber. The less time I have to spend in there, the better.
My skin is doing really well. It is regaining its moisture. I was telling C last night that before my skin was bone dry. It felt like it was just completely devoid of any moisture to the very bottom layers. Now, my skin feels like normal soft skin in many places. The dry areas are still dry, but it seems more like “normal dry skin” rather than insanely dry skin that cracks open when I move. I still have pink rashy looking stuff on my arms and legs. I look a lot like I did when I was still on steroids. I wish I had taken pictures of my skin back then, but I was so ashamed of my skin! Man.. how things have changed.
Anyways, time for some pictures. C took some pictures of my back last night. You can see that there are some red spots. She said that it looks like when I had “eczema” and she would put clobetasol on the red spots. The flash makes it look a little weird, but you get the picture.
I hope everyone has a great, flare free weekend!
Yesterday, I completed 10 full months of steroids. Yesterday, I also had the most normal day I have had since starting my withdrawal on September 14, 2012. Actually, I have had the most normal weekend I have had in 10 months. How strange it feels to be “normal”!
My “normal weekend”:
On Friday, I had a bad day at work. My skin was looking great and I was so excited! Some stuff happened and my boss got really upset and has a hard time controlling her temper. It got me really worked up and I got so nervous it was pushing me into another flare. I held it together pretty well. C and I went out to dinner straight after work! Usually I have to run and jump straight into the tub after work because my skin is so dry.
On Saturday, I went to spin class in the morning with my friend Matt. This is something I did every Saturday morning and I have managed to go a few times during my withdrawal. The amount of sweat that came off of me was crazy. When I was on steroids, I never really sweated. I always wondered why people sweat on their arms, because I had NEVER sweated there. Well, for the first time in memory, my arms were sweating like crazy!!
I came home, bathed to get the sweat off, and decided to take it easy for a while. Then we went to a friend’s place for drinks and then went out to dinner. We got home around 11:30 and I went straight to bed without a bath!
On Sunday, C and I went to yoga on a rooftop at a fancy Beverly Hills hotel with a friend. In class, I really challenged myself and was able to hold positions I have never been able to hold. We went straight to brunch (no bath), then to this really weird dog festival (yes, we are that crazy) and THEN went grocery shopping! I finally decided I should take a bath because I was starting to get a bit itchy. After the bath, I did dishes(!) and laundry(!). It is so funny to be excited about such mundane things such as grocery shopping, dishes and laundry.. but these are things that have been difficult for me over the past few months.
The good: Everything is doing a lot better. My back has even been looking pretty normal! It has red areas and it gets itchier than most other places on my body, but the swelling is down and I don’t think I have oozed from my back at all in a few days. Although oozing on my back has been down for weeks, I have had a few persistent spots that ooze upon scratching. But no ooze here! I’m even wearing a white shirt today with no cardigan over it. I have always worn shirts with patterns or a cardigan over a shirt because I often would ooze through and I would have a huge yellow/brown stain on the back of my shit.
My skin is starting to regain some of its natural oils. It is still dry and cracking, but it I can feel some oils in there. It is still a little leathery/dry.
My arms and legs have the “full body eczema” look. They are splotchy with little spots of irritation. But I am not “red” anymore. You can see in my picture below, I’m wearing shoes in public that expose my feet! Haven’t done this since my legs blew up at about 6 weeks off TS.
Ankles, wrists, elbows, sides and neck continue to be the worst spots. It must have to do with the flexing of the skin.
My face flared up yesterday. I think it is irritated from sweating. Although my face has gone up and down quite a bit, it has been doing pretty well for a while. The skin there is just so sensitive! I still cant use anything on it but cetaphil cleanser and Vaseline. Everything else makes it flare. If I get a little bit of sun on my face, it flares. If I sweat, it flares! But compared to how bad it was 5 or 6 months ago, I really can’t complain.
Anyways, enjoy the picture update. Didn’t have time to do a whole full body picture session, but I will get to it soon.