Month 7.5

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7.5 months down. It’s amazing how time can heal the body. The last pair of photos of my face/neck (below) are the most drastic change I’ve seen. My neck and face were incredibly raw. I had to keep it covered in various ways to avoid infection and allergens. Those red areas in the Before picture were oozy, open, linchified wounds now coming down and healing up. I was barely leaving the house back then – I was too itchy and raw. I try to use a light scarf around my neck to conceal my neck, which is my worst problem area. Something with a loose weave that’s breathable and non-abrasive. Kinda like this…

Loosely woven, soft scarves are nice for summer

HOT WEATHER. The weather lately has been so ridiculously hot (45C /112F) that I haven’t really bothered with a scarf in this heat, but I was sporting a scarf in late June when it was in the high 20’s (Celsius, or high 70’s/low 80’s F).  I was anxious about the outdoor concert (Tegan & Sara) I went to a couple weeks ago, but managed fine. I took off my very light long sleeve and wore a sleeveless tank. It felt a little weird at first but got over it quickly. Regarding body temperature regulation, I’m tolerating the warm weather more normally. In late May, I was heating up too quickly in 21C degree weather (69F) and flared. Though no human would tolerate 45C well, I was handling 27C (80F) fine. So no irregular body temperature issues. That seemed to be a thing of the early stages of TSW and addiction.

Remember: I used to use steroids only once (1 week course) every 3-4 months, so I was probably withdrawing as I was using it. I would overheat in 19C (66F) very easily and needed a fan on me whenever possible. I believe that the lack of body temperature regulation in the past is closely linked to steroid use and addiction, as I have seen a dramatic difference in how my body tolerates warm temperatures, and will be studied in the future when the bulk of the medical community recognizes (and acts upon) steroid addiction.

SUN BEDS. My face doesn’t seem to show obvious signs of TSW. Though I there was some minor ooze above my upper lip over the last couple weeks, as I stopped sun exposure for a month. I went into the sun bed for 5 mins and the wounds are closing up. Before you say anything, I am NOT recommending sun bed or tanning salons. I am using it to my own discretion. I’ve never used sun beds regularly and am generally anti-tanning. But given the medical situation I’m in, I am using sun beds minimally and cautiously. I was going 5 mins every 2 days, but this ended up being too much. I was becoming dark quickly after 2 weeks of that.

So I will be doing 2 mins twice a week for the next little while to see how that goes. Sun beds work for me because going out in this incredible heat for too long is just crazy, and I want to keep my perioral area in check as it has helped to close those open wounds and stop the oozing. I was going for UVB treatments at a dermatology office, though it was becoming inconvenient (a 2-hour bus ride roundtrip, every other day).

Dr. Rapaport recommends light sun exposure in the later stages of withdrawal. Listen to the ITSAN teleconferences or read the transcripts to learn about Dr. Rapaport’s view on sun exposure. I started getting some sun around month 4-5. At first, I experienced resultant itching afterwards though that is no longer the case – though it is difficult to pinpoint what causes some itching. I did not use sun exposure when I was raw and red, but when the redness was down.

SLEEPING. I’ve been sleeping regularly… as in my 36-hour long days are over. Yes, I was staying up for 36 hours at a time because the itching was so intense; I simply could not rest even after taking antihistamines. Benedryl seems to be my drug of choice. I was prescribed Atarax (a recommendation by my doctor and Dr. Rapaport), but didn’t fill the prescription for reasons unknown. Sleep has never seemed so precious after experiencing itch-induced insomnia. Existence was miserable. Now, if I sleep a regular 8 hours, I usually feel tired by early afternoon. Lately, I’ve been sleeping heavily and for longer hours (10-11) now that I can rest calmly. There seems to be a consensus amongst TSW-ers that they become fatigued easily and need rest more than healthy folk.

MOOD. I seem to be moving back into my same ol’ self. I’m starting to think about my academic future again and have been debating when that should resume. The infamous “Second Flare” that all my fellow red-skinners (others who are also experiencing Topical Steroid Withdrawal) experience seems to happen around the 8-10th month mark, so I am feeling apprehensive about going back too soon… My self-esteem is bouncing back from zero to some. I have a feeling it has to do with getting out more, seeing friends/family and frankly… being able to wear makeup again. It can camouflage my skin/face fairly well.

See!

My summer has been good so far. I’went to the local Sun Fest, which is a summer festival celebrating ethnic food and music. I saw Tegan & Sara in Toronto (though I would not recommend the VIP tickets for Downsview Park!) and had some good fun. I’ve been hanging out with friends and spending hot days indoors. 7.5 months feels like a comfortable spot. My need for baths are lessening – once a day for an hour, though that sometimes ends up being more like 1 bath every other day. I should be better about it, but the bathtub gives me the creepy crawlies.

Now for the update pictures. Some of these are pretty graphic, so Viewer beware if you haven’t seen what TSW looks like.

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Kisses Again

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It’s 2:30am, awake with the itchies… Thought I’d be able to pull another night off without taking antihistamines. The last two nights I did without. I was just too tired that I didn’t bother. I did have to get up a couple times because the itch was bugging me, but went to sleep soon enough albeit with less ease and more emotional distress. 

The bulk of June has been pretty good. I started getting a lot of sun, which seems to really have helped open wounds close up. The perioral area has improved vastly as a result. Compared to last few months of oozing, redness and hyper-sensitivity, the area above my upper lip has been the best it’s been for a very long time. The way I evaluate this ultimately is the Kiss Test.

I haven’t been able to really kiss Kris for the last 1.5-2 years  of our relationship because of the amount of sensitivity I’ve had. After even a touch of kisses, the skin will break with soreness and oozing, and will need at least 1-2 weeks to bounce back. Despite Kris’ efforts to keep his facial hair to a minimum, even the most minute scrape or touch against my skin would immediate tear my skin.

I’m happy to it’s changed and can kiss like a normal person in a relationship. Yay! I might experience some sensitivity like probably most people but NOTHING like how it was before. This is a new era of healing!

I remember last October 2012 was the worst point. I had rubbed that area and soooo much ooze resulted. I had a thickass crust of dried yellow plastic over my upper lip. It was distressing and terrible to look at. I almost wish I had taken photos of it just to show you have bad it was. I was crying, wondering if my existence would always revolve around my dysfunctional skin. I wondered if I’d ever experience a kiss again. I felt and looked disgusting. And am forever thankful that I found Dr. Rapaport’s medical literature on eczema.

It’s been nothing short of life-changing. 

I went away with my boyfriend for a day trip to Niagara Falls. We wanted to get away after his stressful week of work. So off we went to our favourite close-by destination. I survived the heat at 30-ish degrees Celsius. Luckily we were in and out of a/c’ed buildings but still am pleased that my body didn’t over react as soon as I stepped out in the heat and humidity. I was pretty warmed up but within my comfort zone. I wasn’t sweating either. Still  waiting for the sweating stage of healing to kick in and actually looking forward to it even. Here I come, sweet, sweet sweat.

Month 5 + Juliana’s Healed Story

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I’ve pat down another month of healing. It’s gone by fairly quickly – more quickly than previous months! I remember in Feb and March feeling like a single week felt like an entire month. It was very slow going and wasn’t sure how I’d make it through, but my time perception has changed greatly and feel like I’m just trucking along until I can finally feel close to 100% again. May has been a month of improvements, as well as back-tracking. I’ll give you the bad first…

The Bad:

Had a pretty big flare after drinking a glass of wine. Not quite there yet! Perioral area has worsened (mainly the region around my mouth) has been raw, sensitive, red and flakey. Nightly itching is a regular occurance. Still taking antihistamines to put me to sleep. Otherwise, I’m awake half the night. Skin still looks pretty gnarly – deep fissures and wrinkling, especially on my arms and neck. Also still pretty dry… but who isn’t in a time like this? I have rough linchified areas on my inner calves, neck, lower back, wrists, below the navel and arms.  Anxiety still pretty high. Not nearly as bad as it was just a couple months ago when I was experiencing a feeling of doom before laying my head to rest. The increasing temperatures and humidity of summer has caused flaring, so I’ve been avoiding the outdoors. Taking the bus is still very difficult as the waiting periods are long enough for my body to heat up in warm/hot weather, so i’ve been taking taxis to go places. Also, I’ve had a noticeable B.O. this last month for no apparent reason and wonder if it has to do with what I’m eating or the withdrawal. I’ve read about many people having the same issue going through TSW. Has anyone found out conclusively if it’s caused by TSW?

The Good:

My skin is feeling and looking better. My face looks near normal. My thighs look untouched by TSW. My bum feels pretty darn smooth! The itching usually only ever happens during the night. Daytime itchies are common, but not as distracting as the night time ones. Still using apricot oil (was using the heavier grapeseed oil) but feel like I’ll soon be moving on a lighter oil soon. Coconut is next! Confidence is gradually reappearing. I notice myself smiling and laughing more 🙂 Able to tolerate cosmetics/makeup, so I can leave the house with eyebrows and lipgloss. Yay.

I went to Fabricland yesterday to pick up a couple different silky fabrics to get some summer scarves made. I’d really need to learn how to sew myself and have a few to choose from. Most of the current scarves I own now are too heavy for summer and want something to just cover my neck since it’s the most damaged/raw area.

I had a chance to meet Natasha from the ITSAN forum in Toronto. She was lovely and a pleasure to meet. Her strength and composure was inspiring and gave me something to hold on to. Hope to meet you again, Natasha!

Impressed that I’m able to slap on some makeup and run around outside. It feels good to finally go out on a regular basis. Oh, right – I also just started working again! I’m working at a retirement home as a “Companion” for en elderly woman, part-time.  Hands down, it’s the best job I’ve ever had. It’s kept me on my toes and surprisingly has given me a new appreciation for life.

My birthday is right around the corner. I’ll be turning 27 on June 25th. I think about how quickly time has passed me by and how great life can be when I’m healthy again. I’ve been thinking more about my career path and travelling I’d like to do next year. I guess that’s another post.

There’s news of a recent Healed Story by Juliana! She had it pretty rough. If you look at her photos and read about her experiences with TSW, it’s amazing to see how much happier and healthier she’s become. I believe it’s taken her 2 years to come to this point. The body truly does miraculous things and can heal. Another beautiful testimony to Topical Steroid Withdrawal and how these prescription creams can do more harm than good. Congratulations to you Juliana!

Sending warm healing vibes to you, xoxo.

Night Itchies and Cortisol Levels

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The itching that inevitably comes with Steroid Withdrawal seems to amplify at nighttime is a regular visitor, although unwelcomed! It was much worse in the earlier months, but is still very present in my 5th month. The itchiest spots are the folds of my arms, wrists, neck, inner calves & inner thighs, ears and jawline. These are also my worst, most damaged areas. The itchiness was so intense before, like down-to-the-bone deep down itching. I’m not sure if the term “itching” gives the horror of the experience justice. The only thing I could do was scratch to give myself some relief. I attempted to push through the itching and not scratch for a few minutes in hopes it would pass. I couldn’t do it for more than 3 minutes — and this took all the will power I could muster. I’m entirely grateful those days are gone.

The itch at present is still pretty bothersome. It’s been getting worse as the warmer days of summer are coming. I have been using 3/4 sleeves and light scarves to mask my skin. I guess the good news is I think that I think things are looking better than they do. I’ve left the house with short sleeves thinking it’s no biggie and then realize how ragged it really looks when I’m out and about. I also get itchies when I’m stressed out, so keeping myself in check with deep breaths helps me regain control. I try to keep the itching at a minimum at night in a couple different ways. 

Dr. Rapaport has attributed the night time itch to lowering cortisol levels. In general, cortisol levels are at its peak around 9am and is at its lowest at midnight. This change throughout the day and night is caused by the amount of sunlight our bodies are receiving — aka circadian patterns. Here’s a chart showing this:

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Cortisol levels are highest during the daytime when our bodies are synhesizing UV rays for its production

The actual episodic bursts throughout the day correlate to our eating patterns (amongst other things). Levels increase soon after we’ve eaten, so snacking throughout the day is also a good idea. 

I also use something called Licorice Root. it’s a herb that prolongs the half-life of cortisol — or in simpler terms, keeps up your cortisol levels up. A naturally-occuring chemical found in Licorice Root called glycyrrhizic acid that prevents the breakdown of cortisol, which is done through enzymes (don’t ask me what kind of enzymes!). I’ve tried Licorice in tea form, pill form and tincture form. Pill form is the easiest – just pop ’em in and go. I don’t enjoy the taste of licorice so tea is a slow and painful way of getting it, although you can blend it with another herbal tea. Tincture is probably the best way to digest it, as tinctures are the most readily processed way to consume herbs for medicinal use. It has more “bio-availability.” I take LR throughout the evening. I start as early as 4:00pm and as late as 6:00pm depending on how I’ve been snacking and how bright it’s been outside (and well how mindful I am). 

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Licorice Root helps to keep up cortisol levels at night

Rapaport recommends antihistamines, particularly Atarax, to reduce itching and help with sleep. I personally use Benedryl, which didn’t work until month 4. Before that, I’d take it (more than the recommended dose) and I’d feel drowsy, but still too itchy to settle into bed.  Often I’d be up for 35 hours at a time. Those were the most bleak of times. I wasn’t sure how i was going to get through it. Now, I can manage sleeping at regular hours, but only with antihistamines. I’ve gone without a couple times and it was a total fail. The itch kept me up for most of the night. So for now, I will continue to use Benedryl alongside Licorice Root and regular snacking throughout the day (no problems with that!).

Even though I take Licorice Root, to say that I don’t itch at all would be false. Much of the itching happens when I get a deep nerve itch and I tend to it. Tending to it (ie. scratching) and applying pressure to the skin to relieve it produces a reaction in your body creating histamine and causing further itch.  However, I have noticed an overall pattern of more intense nerve itching when I’ve forgotten to take LR. 

Happy healing and less itchy days! xo.

All About Our Eczema Ointments

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Interesting post from Zi Zai Dermatology.

Zi Zai Dermatology's Blog

[This post was originally written on request for The Eczema Company who now carries our EczeHerbal™ Ointments in Canada]

Traditional Chinese Herbal Medicine is the most comprehensive and well-organized system of herbal medicine known to humankind.  It has developed from thousands of years of observing and recording the medicinal use of thousands of natural substances to improve human health.  This ancient system of herbal medicine continues to evolve in our modern world.  All of the products made by Zi Zai Dermatology are formulated according to the theories and practices of Traditional Chinese Medicine (TCM).

OUR HERB AND INGREDIENT SOURCES

We hand craft all of our products ourselves in very small batches so that we maintain the highest level of quality.  We do not outsource any part of the manufacturing process and every product is made from scratch with only the finest ingredients.

Jin Yin Hua (honeysuckle flower)The official Traditional Chinese Herbal Pharmacopoeia lists the…

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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!

Dear BGLow,

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Patient undergoing TSW sees improvement in hair loss over time

Patient undergoing TSW sees improvement in hair loss over time

I wanted to share this photo with you showing how Steroid Addiction can lead to dramatic hair loss. I personally have lost at least 1/2 of my hair (head and body) over the last 3 years while I was on Clobestol Propionate, a super potent steroid. I’m only about 120 days into withdrawal, but am starting to see little hairs grow in my hairline (where I lost a lot of hair).

I found this photo from the ITSAN (International Topical Steroid Addiction Network) forum. This individual shows how his hair growth improved over a year after withdrawing from steroids. So you see, BGLow, there is hope for you! You will regain your health and hair once again! Stay strong, hun. xo