It has been a long time since I posted. Again, it is good news, because there is not much to post. My skin is pretty much the same. A little itchy, a little dry, eczematous around the elbows, forearms, and shoulders.
I wanted to post for one specific reason though. C has always wanted to go to New York City. She is such a California girl and hasn’t been many places away from the West Coast. But she has been wanting to go to NYC during the holiday season for years. My parents go to NYC pretty often and usually go during Christmas. My mom has been saying for years that we will meet up there and give C the chance to experience NYC during this time.
Two years ago, I spent Christmas in my parents house, basically bedridden and unable to move. Last year, I had my last bad flare during Thanksgiving. We talked about booking a trip, but my recovery just seemed to much in question. Could I really handle cold, dry weather? I was already in pain, my skin was still shedding, and going through those stages where every other day it was like I was wearing a layer of skin that was one size too small, and then would crack, pop, and peel.
So this year, we decided to go. No fears about my skin.
And we had the best time!! (pics below).
My skin did get more eczemateous. My skin was much dryer than usual and my arms and lower legs got really itchy. But, my skin never held me back. I think that is the beauty of my life post-TSW. Even when using steroids, my skin held me back. Anyways, one day back in LA and my skin is pretty much the same as before I left. I still wonder if what I have is eczema that I will always have or the last little minions of TSW. I suppose time will tell.
I know this is a really hard time of the year for folks going through TSW. My first Christmas going through it was horrible. I missed every holiday party. I stopped going to work 3 days before I was supposed to go home for Christmas because I was in so much pain I could not put clothes on. On Christmas day, I was on a cocktail of pain medication, and in a blur of a day, went to a family function where people were holding back tears and grasping on to me, telling me they loved me and to be strong. That was a terrible year – not only for me- but the people who loved me who were so afraid of what I was going through. I was a shell of myself, covered in red, oozing sores, and unable to move more than a few steps because of the pain. My family, who was used to me being an outgoing, energetic person, was very alarmed by what they saw. For those of you going through this now, MOST LIKELY, it will be MUCH BETTER next year! Hang in there.
And here are a few pictures from our trip to NY 🙂
Well, here I am, a month further along in my withdrawal process. My skin is better than it has been in years. It is better than it ever was on potent and super potent steroids. My arms are still a bit rashy and they get itchy from time to time. But they are better now than they were when I had “eczema” and I was using steroids to control the rashes. I think this area is still repairing from all of the years of heavy steroid usage. Hopefully some day they will be completely clear!
I have been thinking a lot about my steroid usage and what my skin looked like when I was on steroids. When I look at my skin now, I can definitely say that it is better than it has been since at least 2007. I was given my first tube of prescription topical steroids in 2005. My rash started spreading in law school, so between 2006-2009. Unfortunately, I don’t have any pictures of my eczema skin. Any pictures that were taken of me while I was on steroids were taken in such a way to hide the eczema patches. I would put my hands/arms behind my back or pull my shirt to cover up my neck eczema. I had this one chronic patch underneath the right side of my mouth. I would make funny faces instead of smiling, because I felt like it obscured the eczema. So it is hard to find any pictures from before. But, I have found a few.
This picture is from March 2012. This was after my first round of prednisone for my skin. I had a reaction that my doctor described as anaphalaxis. I was prescribed a second round of prednisone. My wife posted it on facebokk, and I actually left a comment on the picture that said “Wow my steroids haven’t helped my neck yet”
This picture is from August 2012, one month before quitting topical steroids. I have posted this before on my blog. My mom was in town and says she remembered looking at me and wondered what on earth was going on with my skin.
Here is my neck today..You can see there is a tiny bit of rash. But significantly less than both of these pictures from two years ago.
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.
Here we are, another week, another day, another hour down. My mom came into town this week to help out because that nerve pain really knocked myself onto my knees and I needed some extra support.
Skin is doing better.. ooze is down, nerve itch/pain isn’t 24/7 at a 10 in intensity. Pain/itch is at about a leave 5-6 most of the time but still is about an 8 at night.
I also wanted to take a moment to talk about why I am doing this. Why have I made a decision to make a public blog discussing what I am going through in very great detail? Last week, I got my first hateful comment from a complete stranger. It really upset me. I don’t know why it upset me so much… I usually handle that kind of stuff well and usually would just let it roll off me. She basically called me an attention whore and told me that I need to keep it to myself and my family. She also said this is the same as blogging about IBS.., so my pictures look like shit??? So, I have been thinking about why I share so much with the world. here are three reasons I blog about my stuggle with topical steroid addiction and withdrawal/red skin syndrome.
1. To raise awareness. I’m sure that this woman who left me a nasty comment will NEVER overuse topical steroids on herself or her children. If she found my blog and pictures to be disgusting, I am SURE that she won’t smother superpotent steroids all over her face, baby, etc. (Also, let’s remember that many people going through TSW were relying on their doctors instructions to ignore the warning label and that it is “safe enough for a baby!”)
I want to raise awareness about TSW so people will stop overusing and abusing steroids. I want to inform people about TSW/RSS so that they will be able to make informed decisions when they have a rash and go to the dermatologist and receive topical steroids. I want my pictures to pop into their mind as they get the prescription, fill the prescription and use the topical steroids. I want my friends with children to think twice before using topical steroids on their babies. I want my friends who are in medical school or are new doctors to think about me before writing a prescription for topical steroids for a mystery rash.
2. To share my experience with other sufferers. Although awareness about TSW/RSS is growing, it is still not recognized by many people in the medical community. I am in the very small percentage of sufferers with access to a supportive doctor (and I see the MOST supportive doctor!) People are very scared and alone and only have the ITSAN resources to get through this. There are a lot of scary symptoms and a lot of fear in the beginning because things take a few months to reach their worst. And then there are late flares to deal with. There are a few early bloggers that posted tons of pictures and detailed information that really helped me. I have found the blogs with pictures to be the most helpful because seeing the symptoms on others is an important part of understanding the healing process. That is why I force myself to put these pictures up. Does anyone really think I like having pictures of my oozing, shedding, red face?? Of course not!! I’ve come a long way in dealing with my vanity.. but I’ll be honest.. some of the worst pictures are on my phone and have never been shared. Maybe some day I will be brave enough to share.
3. To track my progress. When I start feeling frustrated with my lack of progress, I open up my blog and read blog entries from the early days. Sometimes I read blog entries from two months ago. There are days when I just feel so damn depressed and stuck. Sometimes things are so bad, I just can’t see out of all the shit. I forget how far I have come and sometimes I need a little reminder.
Anyways, I hope this explains a little bit more about my motivation behind this blog. YES I AM SEEKING ATTENTION!!! I am seeking attention for ITSAN and the harm that topical steroids do on the body.
Here are the pics. Look at how lovely my back looks! It hasn’t looked this good in weeks.
This weekend C and I decided to get away for a night to our favorite place in Southern California – Palm Springs! It is C’s bday tomorrow and we wanted to spend it on our own, without the stress and drama of trying to arrange a party. We booked a hotel on Priceline and had some really nice friends watch our pups. It was a great little trip, the only problem was that it was too short! I swam in the salt water pool, got some sun, and tried to just relax.
Before we left, I SHAVED MY LEGS. I have only shaved once during withdrawal- right around Halloween. It only took two razors.. But look how nice my legs looked after! And my arms were looking great too.
Here we are celebrating her birthday!
I got loads of sun and it is really helping. I do think the sun and heat irritated my back and neck, which I tried to keep covered up.
Today my skin is a little red and irritated, my back especially. But, things are of course way better than they were in the past.
Hope everyone is having a tolerable day. I know how hard it is in the beginning- just click back to December and look at my pictures! It does get better, it just has to get worse before it gets better.
I decided that I was going to take some time off from obsessing over topical steroid withdrawal and what the future holds. I took a vacation from work, from home, from my dogs, from life, really. Topical steroid withdrawal was really starting to take a toll on my mental state. In the beginning, things were so bad, I was in survival mode. I was always in a hyper-state, trying to just make it through the day, through the excruciating pain, through the bone itching, through all of it. But once things turned around, I had to change my point of view. Things were bearable at about 5 months. I started working more, making court appearances, going out to dinner with friends, exercising and doing yoga, and getting a little sun.
I don’t think my skin got any worse between 5 and 7 months. It was manageable, but still bad. I still had flares, albeit much more minor. I was still terribly itchy with nerve pain. I still had to have two baths a day. Waking up in the morning, my skin was so dry it ripped open and cracked off. I decided to work on being positive and focusing on the positive changes this has brought in me. C started having some minor but painful health problems. Because I was doing better, I decided to work harder to take care of myself, our place, and our dogs. I told myself, I’m better than before, so I can do this no problem. All of that pretending that I wasn’t still miserable started to wear me down. At 7 months I was just worn down. It hit me like a ton of bricks. I realized, I’m not OK. I still feel like shit, I’m still sick, and this is going to take a long time. I was so tired and thinking, I might have to go through another year of this??? The thought of that was just totally overwhelming.
Anyways, I’ve been thinking about TSW and the various aspects of suffering we must endure. The ITSAN group is inundated with newbies and is growing rapidly today. So, I want to take this time to write about what I think people can expect in TSW. At 7 1/2 months, I’m approaching becoming a veteran, and I’ve had a moderate, full body withdrawal (in severity).
1. TSW becomes bearable once you realize what it entails and how long it will take.
Almost every single person who finds the ITSAN group believes and hopes that they will be one of the lucky ones who will be healed in 6 months. The truth is that almost no one heals that fast. Since I have been in the ITSAN group, I can think of only one person who has healed in 6 months and she was a very very short term OTC hydrocortisone user.
I think for the vast majority of people going through topical steroid withdrawal, the minimum time to healing is 1 year. I would even venture to say 18 months.
Withdrawal is terrible for every single person. Sure, some people have a less severe withdrawal than others, but every single person goes through absolute hell. If you used mid-strength or potent steroids, took pills, got shots, or used steroids on your eyelids for years, you are going to have a really tough time.
Accepting this process and what it entails doesn’t usually come until you reach your peak (or rock bottom, whichever you prefer :)) The beginning is so scary, you read all of these terrible things on the forums and blogs and just hold on to hope that you have already gotten as bad as you are going to get. And it takes a long time for it to get worse, often months. You hold onto hope that at least you only used for 5 years rather than 30, or that you never took prednisone, or that you never got an injection, or you never used it on your face, etc. Of course those things are factors in the process, but like I said, no matter what, it is going to be absolute hell.
2. It has to get worse before it gets better.
I hit my rock bottom at 3 1/2 months, which is fairly common. The first three months of TSW were terrible for me. I was so sick, beet red, oozing, shedding, the works. I remember cups of skin falling off of me in my office.. going into the bathroom and scratching for 45 minutes, tearing up my skin, crying, and flipping out. I thought it was absolutely terrible. And then one day, I think a few days after my three monthiversary, I couldn’t get up. I couldn’t wear clothes. All I could do was sit in the bath and cry. I flew to Texas in a terrible flare. My face was oozing, I hadn’t worn clothes in a week and I was really afraid of having to wear a shirt. I completely drugged myself, and tried to sleep. Things got worse for a few days in Texas. I went to my family’s Christmas totally drugged and in horrific pain. It took everything for me to not just start sobbing.
After this period, I have never gotten that bad. I’ve been progressively getting better. I’ve had flares but never even close to that period. What I didn’t understand until I got to that point, was that it had to get absolutely horrible before I could get better.
3. Having an altered physical appearance is the least difficult part of TSW.
It was really hard to look so bad in the beginning. I had to go to court, see clients, and see friends. I was embarrassed and humiliated about the crust on my face, the flakes falling off of my scalp and getting stuck in my hair, the swelling, hair loss, ooze soaking through my shirts on my back, the list goes on and on. But once I was so sick, I stopped caring. Being in excruciating physical pain for weeks or months on end will really teach you about what’s important. I truly realized and fully understand that beauty and appearance are fleeting.
I think accepting a temporary altered appearance is another thing that takes time. I think it only comes once you reach your peak.
After going through TSW for 7 1/2 months, I really think that looking ugly is the easiest part of this. Yeah, people stare, and it pisses me off, but in a few months, I’m going to have beautiful, perfect skin. Having struggled with my skin a lot the last few years, that is huge! I will be able to wear tank tops, backless things, etc. These are things I had to worry about before TSW.
At this point, I’d trade looking bad with feeling better in a minute. I’d rather look as bad as I did in the beginning, but not have to wake up first thing in the morning and do a frankenstein walk to the bath because my skin is so dry it is tearing open. I’d trade my clearing up face to not have stabbing pains in my back and itchy bones. Being ugly or unattractive is a hell of a lot easier to deal with this than the terrible symptoms.
4. There are positives to TSW
Going through TSW will show you how strong of a person you are. To get through the physical and emotional pain for such a long period requires that we gather every ounce of strength we have. It also forces us to be vulnerable and just break down sometimes. It will teach you what is important – health, family, and living life to its fullest. It makes you appreciate the small things in life, like going out to a restaurant with friends, walking your dog, sitting outside on a beautiful day, being able to wake up feeling good. It will teach you who is a good friend, and which friends can’t be relied on. You will value your partner, parents, kids, and anyone who has supported you through this. You will learn to SLOW DOWN.
Most importantly, you will learn to appreciate and love everyday of your healthy life.
I think everyone is on their own TSW journey, both physically and mentally. I don’t think you can accept all of these things until you experience them. So maybe someone in the early period will read this and later on in the process, think back to this and realize they have come full circle and accepted the reality of the journey.