On August 7, 2014, I stopped using topical steroids. I’m charting my progress here.
A New Blog for TSW
I am in the process of accepting that this whole TSW thing is going to take a lot longer than six months. I’m laughing/crying about that. Anyhoo, I moved all of the following posts over to a new blog here: skincracklepop. Enjoy. Will update with a six-month post shortly.
I’ve been hesitant to write this post because month five was actually very tough. The last two weeks of December, something went horribly wrong. I just burned and cracked every day and the pain was nearly unbearable. I would wake up, shower, and then meditate lying down until I could talk myself into getting up for the day. I had the crazy chills/fever/nausea cycle all day every day. It really felt like I was back in the early days. So upsetting. Then, on January 1st, the fever broke and I had three days of no pain. It was amazing. And I was so grateful for the break from it all.
Since then, I’ve been better, but still with a fair amount of pain and discomfort. The fever/chills/nausea has continued, but to a lesser degree. My skin is still cycling through redness, cracking, and shedding, but it now feels only 1 size too small instead of 3 sizes too small most of the time. So that’s improvement.
We have a trip to Hawaii planned the last week of this month. We’ve considered canceling it because it’s hard for me to imagine doing a six-hour plane ride. I haven’t been away from home for more than 6 hours. I’m afraid I’ll just be in pain the whole time and totally miserable. However, there’s also a chance I could have several days of no pain while I’m there and be able to enjoy myself. It’s just so unpredictable. So we are currently devising strategies to deal with all the potential situations we might be confronted with. Lots of weather-checking, clothes inventorying, sunscreen-buying, etc.
Current major problems continue to be my hands, my neck, and my backside. Still some days of oozing on my backside, which is so gross. The rest of me is pink. Sleep has been improving, for sure. My post-bathing-hell time is about 30 minutes now, instead of an hour like last month. I’ve gone back on the Vaseline because it really does help me feel the most comfortable, and at this point, I NEED comfort. I just have zero resiliency and stiff-upper-lip left after five months of this. I’m always a few seconds away from a crying jag.
I had hoped to go back to my office job for full days by now, but that is just not happening. Maybe next month.
What’s helped immensely this month is meditation. If anything good has come out of this ordeal, it’s been my ongoing and deepening practice of meditation these past few months, out of necessity for dealing with pain. These have been the most helpful so far, all of which I’ve listened to on audiobook:
- Jon Kabat-Zinn, Full Catastrophe Living
- Jon Kabat-Zinn, Meditation for Psoriasis, and this article does a great job explaining the medical study about this
- Rick Hanson, Meditations to Change your Brain
- Anything by Pema Chodron
Hoping next month is much better!
Recent pics of hands:
I hope all those exclamation points convey my elation at having four months of this bullshit behind me now. Pardon my French, but it feels warranted here.
I was talking to a close friend of mine about the trauma of going through something like this. I don’t think I truly understood the nature of life-altering accidents, illnesses, and so on, before experiencing one myself. It changes you. My doctor told me that another of his patients that went through this has PTSD from it, and that sounds about right. I know that over time I will totally get over it. But I also don’t want to ever forget how incredibly precious my health is. And in the future when a friend or family member experiences something like this, I really want to be there for them. I’m not sure I got that before going through this.
Currently my issues continue to be sleep, my hands, my neck, and my backside. The hour after bathing continues to be just torturous, wayyyyyy stinging all over. I’ve returned to work in the afternoons, which is working out fairly well. My max time away from home/tub is averaging about 6 hours right now.
What’s helping some is massive amounts of almond oil. It keeps the cracked skin from feeling like I’m a glass window breaking as I walk. I’m also doing twice daily heat packs with almond oil on my hands (put the oil in a plastic sandwich baggie, slather up my hand in it, wrap the whole bundle in a towel, and then hold it against the dog’s heater for thirty minutes).
I’ve been mentally collecting descriptions of how certain things feel at the moment:
- During the night, my neck sweats and stings from about 3 a.m. to wake-up time. It feels like an army of biting ants or fleas in the crease of my neck. Almost impossible to sleep through. Ice packs help.
- My skin feels three sizes too small for me, so I’m busting open all over, like papercuts on every single inch of me.
- Sleeping feels like sleeping in sand, so many skin flakes in the sheets. So disgusting.
And here are some pics from this morning:
Really looking forward to writing my five months post!
Week 15, Hallelujah!
Today marks completion of fifteen weeks of TSW. Woooooooo! Yesterday I had my first half-day back in the office at work (after which I raced home to the tub), which was pretty manageable. Everything and everyone seemed to be moving at warp speed. Downtown felt so huge and vast.
Last week my backside and hands finally stopped oozing. I was afraid they would start again, but so far, fingers crossed, they haven’t. That means nothing on me right now is oozing. Massively awesome. Now both areas are peeling up, cracking off, and shedding, and my fingers are very swollen now. I’m glad I took that picture of my hand at week 11 because it’s helping me see the progress.
Sleep is still not-so-great. I tried Ambien, even doubling the dosage, and it did nothing for me. I guess it doesn’t work for everyone.
I’m occasionally still having temperature swings and body chills. I noticed this especially after trying to do some yoga the other night. My skin is strangely delicate and not used to being stretched. I’m trying to get out for a short walk every day.
I feel most broken these days for the hour following my showers or baths. I take a hydroxyzine then just to mellow out.
On the whole, moving in a very positive direction and finally starting to get some of my life back. YAY!
And just to show some other progress, check out how my elbow fold looks today:
Week 11, The Worst is Over, Right?
Really hoping so. My main problems now are:
- the ongoing disturbed sleep issues
- my hamburger-meat and still-oozing hands
- my hamburger-meat and still-oozing backside, which makes sitting pretty uncomfortable.
The rest of my skin is not horrible, just super dry all over and splotchy red in places. I realized that the only parts of me not affected were the tops of my toes. Everything else was Chernobylized. Did I mention that three moles peeled off? Poof. Gone. But here’s to hoping that I’ve suffered through the worst and I won’t go back to the truly horrible times.
This past weekend I went out both days for a couple of hours. On Saturday I went to the fruit stand to get quinces, and on Sunday, The Man and I went out to lunch. Both felt like a triumph! Unfortunately I had a weird re-surge on my backside mid-week that’s making me unhappy, but I know it’s just part of the two-steps-forward-one-step-back nature of this whole shitstorm.
Speaking of, now that the pain is no longer deep in my skin, I’ve been able to have a much better day-to-day life, which has greatly improved my outlook and mood. Bring on week 12!
Week 8, Trying to Manage
I’ve completed 8 weeks. Yay for time passing. I’m now on day 11 of no moisturizer. Current symptoms:
- Hot/cold issues. Can’t maintain my body temperature and constantly damp as a result of going back and forth between freezing and sweating. Massive night sweats. Yuck.
- Stinging all over. So wrong.
- Itchy! Skin is still very crusty and pulled tight, especially on face, arms, hands, shoulders, and calves. Some healed spots under breasts and on belly.
- Oozing sores. Still having on/off oozing on ears, neck, elbow folds, and butt. Gross and uncomfortable.
Things that have improved:
- I’ve had some days where there was no oozing.
- I’ve had better sleep than the first month.
- No more gunk coming out of my eyes.
- 80% less swelling overall. Still have some in my calves and ankles.
- 70% less redness overall.
- Lymph node swelling (groin and neck nodes) 50% reduced.
- Maintaining a positive attitude. It’s difficult to be in such extreme discomfort for so long and not be able to leave the house and live a normal life. I’m so grateful for being able to work from home during this time because it takes my mind off things and I’m able to earn an income. But I haven’t gone to the grocery store or walked more than ten minutes outside since this started. Oy.
- Understanding what the long-term implications are. My doctor seems to think we’ll have a good picture of what my eczema (atopic dermatitis) will look like after six months off steroids. But so many TSWers claim there is a full cure of eczema two years after quitting topical steroids. I’m not sure what to think about any of this.
Here’s a pic of my elbow fold on a recent good day (meaning a dry day):
Week 7, Crusty
Just want to give a brief update on my progress. Mostly I’d like to complain a whole lot about how unbelievably difficult this ordeal has been. Weeks 5-6 were some of my worst, mostly having to do with my inability to cope emotionally with week after week of pain and horrible sleep. Lots of losing my shit out of the blue and being reduced to racking sobs. This was surprising because I tend to think of myself as a strong person. Funny what weeks of this can do to a person.
Around the beginning of week 7, I started trying to reduce my Vaseline usage. The first few tries were just unbearable, and I had to use it again. But I kept trying, and right now I’m on day 3 of no Vaseline. All I’m using on my skin is the daily Epsom salt bath. My skin is like a dead snake, just scale after scale after scale. You would think underneath all of these scales would be fresh, beautiful skin, but instead there are just more scales, or blood. My skin is pulled across my face like a drum. It’s ridiculous. But I’m trying to manage. I read around a bunch and just decided to give it a try. If it actually does lessen the time I’m suffering, then I’m all for it.
I’m not sure if others have experienced this, but in the past week I’ve lost two long-standing moles. One was a seborrheic keratosis mole and the other was a cherry angioma mole. They just dried up and peeled off. I’m amazed.
To deal with the extreme dryness on my hands, I’ve been using white cotton gloves spritzed with water. This helps so much. My skin stays reasonably soft throughout the day.
I’m not really sure what else to say. This whole thing sucks and I can’t wait for it to be behind me. I’ve never wanted time to pass so quickly. I am feeling better, but that is so relative that I almost hesitate to say it. Here are some pictures I just took:
Week Five, Overwhelm
I just finished my fifth week. Weeks 3 and 4 were the worst I’ve had so far: many horrible days of white-knuckling through the pain, oozing, and lack of sleep. Looking back, I’m not sure how I got through it and I really hope it never gets that bad again. One thing I think TSWers should do is ask their doctors for vicodin. I just did and I can’t believe it took me so long to think of that. There just comes a point where the pain and suffering feel overwhelming and cause their own problem of soreness and exhaustion. Here’s to hoping a good painkiller will make those “surging” days a little more bearable in the next month.
Otherwise, I’m still using the Domeboro, Epsom salt baths, Vaseline, and hydroxyzine (antihistamine). I’ve been able to rely a little less on the ice this week, which feels like progress. My skin is still weeping in spots (inside of elbows, neck, chest, and eyes), though there are less of them and they are weeping less intensely. The swelling has gone down by about 50%. Overall my skin feels and looks like red sandpaper. It’s extremely hard not to scratch the itch, even when I know all the reasons I shouldn’t. It’s a constant battle.
I went out for a ten-minute walk yesterday at noon, with a hat, sunglasses, and covering clothing. It felt good to move my body and be outside. I think on my good days I need to make sure I do some basic stretching because I feel so sore and stiff all over. I’ve noticed that because of the pain, I try to find a comfortable position and then hold it as long as possible. So when I’m sitting on the couch, for example, I don’t move. It keeps me comfortable, but then later I feel broken as a result.
The other thing I’ve been trying to do is take my mind elsewhere. That can be sooooo hard when you’re burning, oozing, and itching! A few times it’s been so painful that I’ve taken some sleeping pills and slept off the worst hours. I’ve watched a lot of movies and listened to a couple of audiobooks. I’ve been trying to practice a basic form of meditation (just focusing on my breath) to calm down and keep from scratching, but I feel like I haven’t been very successful at all with that. Must keep trying.
Week Three, Domeboro
This week was all over the map, two steps forward, one step back, and all those other mixed metaphors. I can see the healing, but it once again felt non-linear from one day to the next. So while things are improving, I’m still having:
- Very bad sleep
- Weepy, gross ooze
- Fiery skin
- Red rashy bumps
- Nerve stinging on the back of my hand that keeps me awake some nights
- Dry flaking skin
This ordeal is kind of kicking my butt, I must admit. At first I was all peppy and like, no problem. Now I’m like, okay, wow, this is ridiculous, and it might go on for a while. Oy!
The bright spot in this week was one night of good sleep and discovering Domeboro. Wow. You should all run out and by some. Basically, it’s an astringent and it really dries out the weepiness and little blisters. I’ve been soaking a washcloth in it and then using it as a compress for fifteen minutes twice a day on my chest and neck.
And here’s a pic I just took:
Week Two, Endurance
I meant to post a week 1 update, but alas, I was too busy packing ice onto my burning flesh. All I can say about the first week is: pure misery. Here are some highlights:
- Absolutely no sleep
- Gunk coming out of my eyes like crazy
- A clear goo oozing out of the rest of me
- Burning, burning, and, oh, more burning
Here’s how I looked at the end of week 1:
Foolishly, I thought I would be above average in this whole healing experience. Why? Because I am upbeat and positive, and naturally the Universe would want to reward me for that, right? Wrong. A couple of days after this picture was taken, the “red sleeves” came on and the red bumps spread out to my back, butt, and legs. I was going backwards, not forwards.
I had been hoping that healing would be linear, that every day I would improve just a little. Wrong again. This going-backwards interlude ended with a serious crying jag because I hadn’t slept in days. Oddly, it seemed like my eyes would not actually produce tears. I’m hoping I was imagining that.
Fast forward to the end of week two. Better. Improving. Marginally. I slept through the night for the past two nights, one of them without ice packs. Massive victory! I’m drying up and shedding skin all over the place. My eyes and lips have little cuts all around them that make living unpleasant. And I generally feel gross and awful and like I still have the worse sunburn ever in the history of the world. But, I am trying to stay positive. I figure I’ve got nothing but my shiny attitude.
I haven’t left the house since this whole thing started except to go to the doctor. It’s August and bloody hot, so I’ve been hiding in the temperature-controlled basement. I’ve been fortunate enough to be able to work from home, thank goodness.
Here’s how I look today, at the end of week two:
The Beginning, Much Wow
So, yes, I did have a “rebound” reaction after stopping the topical steroid I’d been using the past year (clobetasol). My face swelled up so badly that I went to the ER, where they put me on a course of prednisone for two weeks.
The bad news is that after I tapered off the prednisone last week, the face swelling and rash came raging back. I’ve been off the prednisone now four days. My eyes are so swollen that one of them actually sealed shut yesterday while taking a nap (has since re-opened, thankfully). My face is splotchy with red patches and I have a pretty bad rash across my neck and chest, inside my elbow folds, and on the backs of my hands. When I woke up today, I felt like the elbow folds and the backs of my hands, while still rashy, had improved. Progress!
Naturally, I spent all of Saturday reading up on topical steroid withdrawal. Horrifying! Apparently, this can take anywhere from six months to two years to clear up. Quelle horreur! In particular, I found the academic articles posted here on ITSAN (a nonprofit trying to raise awareness about topical steroid withdrawal) to be very useful. My inner scientist always loves a good peer-reviewed article.
I see the dermatologist tomorrow for a follow-up, so we’ll see what he has to say about my situation. I’d really like to stay off of the steroids at this point, but I’m guessing he’ll take one look at me and want to put me right back on them. However, I’ll give the guy a chance since he’s the one who told me about rebound reactions in the first place.
The good news is that there are a ton of blogs out there detailing people’s experiences with this condition. I appreciate this one, this one, and this one. After reading them, I feel like a pretty typical case: atopic dermatitis for years treated by stronger and stronger topical steroids. Turns out that will catch up with you eventually. Sadface. Literally.
I’m basically just trying to keep up my spirits while making a Plan. Sounds like this is going to be an uncomfortable ride to say the least. I’ve been hiding in my basement the entire weekend (too warm upstairs), sitting on the couch with ice packs on my face and neck. I’m definitely unfit for public viewing and moving around isn’t so easy. Oy!
I don’t have the guts to post a full picture of my face. Here’s a partial instead. Wish me luck is all I can say.