Update: Month 4 Symptoms

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Today marks the beginning of Month 5! I am finally starting to see improvements – thank God! Although my skin physically looks bad from dark pigmentation, linchification and “elephant” skin, it’s starting to normalize, regaining some smoothness and normal skin colour. Deep wrinkles are flattening out and beginning to slowly disappear. Hair continues to grow in where I had bald spots (although eyebrows are still pretty non-existent). Makes me wish I took photos earlier on to show that improvement, but I still have much improvement yet so I will get on it very soon!

Itching. The itching has gone down considerably. For the last couple weeks, the itching only happens around bedtime and in the middle of the night. Now that summer is approaching, the rising temperatures seem to aggravate flare-ups, so wearing long sleeves and scarves has been challenging in this T-shirt weather.

Sweats/Body Temperature. This is one of the symptoms that have almost completely disappeared this month. Until recently, I was experienced extreme body temperatures. I was either too hot or too cold. Prior to TSW, I had always been too warm, sweating and loved the cold. I remember in February, I was out with Sara (who is always on the cold side) having brunch at a small diner, and she took off her sweater while I was shivering in my winter coat. Sleeping on my bed was also challenging as I would sweat where my skin met the bed, so I had to rotate every couple minutes to stay comfortable and keep from itching. At the same time, I felt cold on the inside and my feet needed slippers to keep warm. This discomfort kept me awake many nights. Now that it was almost disappeared, I can sleep much better through the night.

Dryness. My skin is still very dry and requires regular moisturizing, although it retains that moisture for much longer. I can wake up moving about more comfortably, not feeling any “pull” while walking or turning about. I still require long baths which is just fine. I don’t have as much anxiety as I used to in the bath, which is a huge plus. I absolutely hated going into the bath because I knew my skin would flare up and I would be fighting the itch for hours. Looking back, it seems like a necessary evil. I continue to use Epsom salt (2 cups) for a full tub. They have been a huge help to me despite what many people say (including my own family). I can physically feel the difference between regular tap water and the softening effect of Epsom salt in the water (and consequently, my skin). Its effects are so obvious to me, it’s not worth the argument. By now, I know my own skin and know what feels good for it.

Sleep. Sleep time is much better. Although I continue to use antihistamines to help me sleep, my anxiety has gone done a lot. It felt awful getting ready for bed, as though there was “impending doom” awaiting me – which usually just meant struggling with the deep-down itch while trying to fall asleep. Most nights just a month ago was like this. I spent many nights (and days!) awake from the discomfort of my body. I would spend all night scratching and itching. Now I seem to consistently wake up once or twice for 10 minutes or so. This seems like a HUGE improvement. The next step will be not having to take Benedryl every night for sleep!

Elephant skin. The wrinkley, extra, loose skin on my neck, stomach, chest and thighs have come down a bit. It was bothering me most on my neck as the extra skin creating thick folds that sat on top of each other, which made the area irritated as skin just rubbed against each other and made me my wet/moisturized skin very very irritated and itchy. The skin between my boobage and underarms is still elephanty and can be pulled away from my body – eww, haha sorry TMI, but I want to be able to look back at this post and see how far I’ve come!

Perioral issues. The area around my mouth, especially above my lip and below my nose, has been in bad condition for the last few weeks with cracking, open wounds, redness and oozing. I’ve been able to manage it by using big globs of Castor oil over it. I woke up a couple weeks ago with a large yellow dried crust over the area (and my right cheek). This happened after Kris attacked me with kisses, even though we thought we were being gentle. Others from the ITSAN forum have had the exact same issue (even if they didn’t use steroids directly in this area) and have seen gradual improvement in their later months). Hope!This perioral issue has been ongoing for a very long time now (since age 12, now 26) and has worsened over time with steroid use. This has meant that I haven’t been able to freely kiss my boyfriend of 3 years since June 2012. Huge bummer. If there’s one thing that needs to heal, it’s this!

Linchification and pigmentation. My neck and arms have suffered the worst of this, especially my neck insofar that I usually have to wear a scarf to hide it. I’m starting to see a little improvement in the neck area, much more in my arms. My arms and skin in general seem to be more resilient than before. Before skin would come off easily if I scratched it, whereas now it just kinda stays. These are the sort of little improvements I’m seeing that will eventually surmount to bigger improvements!

Mood. I feel like I’m in generally better spirits. Getting sleep has helped immensely. Easter weekend (first week of April) I made plans to join my family in a church event but ended up cancelling as I couldn’t sleep the night before. That has changed dramatically since then! And of course, the warmer weather and sunshine of Spring has probably helped too. I still feel self-conscious and withdrawn from social events and whatnot. I look forward to getting out more often in the future and feeling good about myself.

I did some spring cleaning in my room, did a bit of feng shui, so I’m feeling more upbeat in my room. I’ve also been walking Dexter more often too, which we always enjoy. I’ve been listening to more music, which usually means I’m in better spirits. At first, I was sort of forcing myself to listen to music. I would play my “World Music” playlist whilst in the bath, and would force myself to bust some moves while I did my hour-long moisturizing routine (it’s more like 40 mins now).

I still have many bad days – thinking about when this will all end and when I’ll finally feel normal again, but bad days seem to be a part of this TSW ordeal in general for many. It’s given me a chance to rethink about my priorities and how I view healthcare.

Overall, seeing these improvements over the course of a month has been encouraging and believe that finding ITSAN and deciding to withdraw from steroids has been the best decision I’ve made. I feel so lucky to have found out about steroid addiction at relatively young age as a steroid-free regime will give me a chance to live life more fully… Imagine a life without kisses! Can’t wait to see what sorts of improvements Month 5 will bring me!!!

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Recent photo, at a Starbucks with Kris. Photo updates coming up in a couple weeks!

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5 responses »

  1. Hey there Leizel, so glad you are starting to see improvements!!! I know you have suffered a lot with feeling alone and isolated and uncomfortable, so it’s great that things are getting better. Also helps that you have a supportive boyfriend and it will be great to get to the day where you can kiss and not be conscious of your skin 🙂 Seeing improvement even if it is small makes things more tolerable and hopeful! I have had a lot of the same improvements as you and I’m right behind you in withdrawal time, I am entering my 4th month. Already the really horrible days are a memory, although I don’t want to forget how “down” and despondent I was, as it makes me appreciate every moment where I don’t itch and feel good about myself. The sleeping and body temperature thing is so relieving to be more ‘normal’, isn’t it?!?! Your face looks good in this picture and not red at all. I am excited for both of us to continue healing! Keep that optimism, my fellow warrior friend!

    • Thanks Anna. It is pretty great to finally have breaks. Taking advantage of them and enjoying that time makes the next flare that much better. It’s so easy to fall into a rut and enjoying things as much as you can is so important to making this liveable. I’m happy that we’re through the worst of it and can start walking towards the end of the tunnel.

  2. I know pictures CAN be deceiving sometimes, but your face really does look good in this photo! Even and smooth! The area around my mouth is really a problem zone for me, too…whenever I’m flaring anywhere, it will pop up around my mouth for sure. So strange…but glad to know it’s not that unusual!

    • My face is less red and not so bad anymore – it’s just around my mouth that’s troublesome. Haha, the lighting and overall blurriness of my webcam is very forgiving!

  3. Your skin looks really good! I found your blog through Zi Zai Derm. I use to have really bad perioral dermatitis a few years ago (2009-2011 really). Luckily, the bumps and itching cleared up (I went through some minor steroid withdrawls too) and the redness has faded but it’s not completely gone. It won’t ever go away completely, but that’s okay. A life with no bumps or itching is fine by me, it was horrible for a while.

    Either way, stay strong! Skin issues are really the worst so I feel for you completely 🙂 You’re making great progress!

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