This post contains pictures that some may consider graphic. If you are here to see cute pictures of my daughter and do not want to read about my withdrawal from topical steroids, click away and check back tomorrow for something more lighthearted. Yes, I am nervous to post such personal pictures of myself.
The middle of March marked one year since I’ve gone off steroids and started this long (miserable) withdrawal process. And since it’s the last day of this lion of a month, I think I better an update on my progress over the past year.
It’s difficult for me to put into words all the thought and emotions that go along with this experience so far because my thoughts and emotions are all over the place. On one hand I’ve felt exhausted, scared, worried, downtrodden, depressed, cynical, envious, guilty, and anxious (to name few). But on the other hand, and sometimes at the same time, I’ve also felt hopeful, excited, relieved, lucky, lighthearted, joyous, and optimistic. You name it, I’ve lived it this past year.
I knew I wouldn’t be healed after one year, and if I had to guess (based on my withdrawal so far and my history with steroids) I’d probably say that two and a half years is my number. But I am hopeful that the very worst is behind me.
My withdrawal started off slowly compared to most people I’ve heard about. This is probably because I was still on the immunosuppressant that was supposed to help my skin back before I knew about TSA. When I did stop taking the drug in May, my skin rapidly went down hill. My worst months were July through October. I had a bit of a break with calmer skin in November and December before going through a rough patch again in January and February of this year. In March things started to calm down again, and now we are on the brink of April already! I’m hoping my birthday month is extra nice to me. 🙂
Here is my one year progress report through pictures:
As you can see, I’m looking better, but I’ve still got some healing to do. Let’s talk about that first.
A Work in Progress
The overall dryness and flaking. For me, this has been the most unrelenting and bothersome aspect of the withdrawal. The severity of it ebbs and flows, but so far “my best” is still pretty bad and nowhere near normal. It’s not like a peeling sunburn with large pieces of dead skin hanging off my body at this point (though it certainly has been at times), but rather an utter lack of moisture that seems to originate in the core of my body. No moisturizer fixes this. My body is just not producing oils to keep my skin smooth. As a result, there are fine lines covering most of my body, and my skin has a dusty, ashy quality. When I take my clothes off, I can shake out teeny tiny particles of skin that have rubbed off. It’s disgusting and probably TMI for all you readers, but it’s reality right now. Let me tell you, I do a lot of cleaning and vacuuming these days, so you don’t have to worry that my house is gross. Anyway, for this reason I still have to spend a lot of time taking care of my skin throughout the day, and mornings are typically stressful and rushed. I wear frumpy clothes every day because I don’t want all my moisturizers to ruin all the clothes I actually like. I’m waiting for Clinton and Stacy from What Not to Wear to ambush me any day now….
Itching. It’s strange because lately my legs have been itching me like crazy yet the skin there is better in every way than it is anywhere else on my body. Could that mean this late-stage itch is a sign of healing…? I don’t know. Nothing about this makes any sense. Everyone knows that dryness causes itchiness, so there’s that, too. At this point, I don’t even notice half the time I’m scratching. If you’ve spent any time with me over the past few years, I’m sure you’ve seen me in action. Luckily, itching rarely keeps me up late at night or wakes me in the middle of the night anymore. THANK GOD. That sucked.
Bedtime. I still struggle with bedtime because it’s a major source of anxiety for me. Even though itching isn’t keeping me up, I still have a hard time falling asleep at night and an even harder time waking up on in the morning. This is a mental thing. In bed is where I do most of my deep thinking, most of my worrying, most of my wondering will I ever ever ever get better? I’ve grown to despise and totally dread mornings because I hate the whole routine I have to go through to get ready. It’s not as bad as it use to be because my overall skin is better than it was, but waking up in discomfort and immediately having to deal with it in such a physical way is not a fun way to start a day.
Getting back to being Katy. I’m realizing more and more how much all of this has affected me emotionally. It’s crept into more parts of my life than I’d like to admit. I’m more anxious, more OCD, more withdrawn, more “hot and cold,” than the real me was. The last ten years haven’t always been easy for me, but the past 4.5 have really sealed the deal that I’m probably still going to be dealing with this emotionally even after my skin has healed. I’ll address that issue when I get there though.
Okay, so now for the positives. It’s much more fun to get the good news last!
My hands! Even when I was on steroids and all the drugs, my hands never looked much better than they do right now. Once the withdrawal process started, it was a rapid decline that ended up at their worst at the end of July. The ugly truth:
Look at the elephant skin! Look at the redness and peeling! Look at the swelling! I couldn’t wear my wedding ring for eight months due to all that swelling. But now my ring is back on and back to rolling loosely around my finger. (And my ring is a whopping size 4, so the fact that it’s loose again is a true testament to my healing.)
Here are my hands now, still looking dry and wrinkly, but no longer red, swollen, flaking, and itchy!
Sleep. As I mentioned above, I sleep soundly through the night most nights these days. This has been true for a while now actually. I would say around six months into my withdrawal is when I stopped waking up multiple times throughout the night due to the itch. I know many people struggle with sleep much longer than I did, so I feel pretty lucky in that way.
Mornings. Yes, I did just rant about how much I hate mornings. I still do, especially on work days, but not as much as I used to. When my skin improves, my mornings improve. As my skin is right now, it doesn’t take as long to care for each day and it isn’t painful when I wake up. I can move my face. It’s no longer unbearable. Annoying, itchy, frustrating – yes. Painful, tear-inducing, soul-destroying – no way. I’m getting better, and my mornings are, too.
Redness and elephant skin. I would say my skin tone has gone from tomato to pastel pink, depending on the body part. My upper body is pinker than my lower body, and this has always been true no matter what shade of red it’s been. People who don’t know me or just see me in passing probably don’t notice anything unusual about my skin. The elephant skin around my knees, elbows, and fingers is slowly going away, too. This is good because wrinkly knees made me feel 90 years old.
My legs. They are still a bit cut up, and like I said, they can itch like crazy, but the skin on my legs is smoother than anywhere else on my body. The moisture is returning there for sure (I am significantly less dry on my legs), and this gives me hope that it will spread to the rest of my body eventually, too.
Sun sensitivity. I’ve written about my extreme sun sensitivity here before, and I’m happy to say that those days are still behind me. I don’t break out in a rash the moment any light touches my face. If I have a reaction to the sun, it’s going to be a normal sunburn because I have fair skin rather than an oozing, spreading rash because I have a “sun allergy.” Dr. Rapaport says that the sun is wonderful for late-stage healing, so I am excited to use the sunshine for my benefit this summer. This aspect of my healing has truly been a life-changer for me.
Life, in general. My skin isn’t holding me back as much as it used to. I’m getting out, being social, and taking Charlotte to the park. I wouldn’t say it’s perfect yet, but compared to one year ago, life is good. If I never improve any more, I wouldn’t like it, but at least the thought doesn’t make me want to jump off a cliff or anything. I could still be happy person, at least most of the time. 🙂
(This was Father’s Day last year. As you saw in the pictures above, my skin was in an awful state, and I felt every bit of it. I definitely didn’t want my picture taken, but somehow Chris snuck me into this photo of Charlotte. I like it not because the distance prevents one from seeing what things looked like up close, but because my face shows that I had a really good day regardless of it all.)
Any questions about topical steroid addition and withdrawal or my experience? Leave a comment or email me! katherine dot bremer at gmail dot com.