Saturday, June 29, 2013

Challenge accepted: June 29, 2013 - day 2 without showering

My mom has been hassling me about using water.

When I was a kid, I had pretty severe eczema in all my creases (elbows, knees, knuckles...) and my mom was reminding me about how she used to use Cetaphil gentle skin cleanser to wash and moisturize me. 

My shower has kind of been a torture chamber recently where I just stand, moaning and groaning while I scratch every inch raw. "This is how we cured your skin before" she kept repeating as she looked at my skin shaking her head. I kept telling her this is different than before! I just need time but all her tsking was getting in my head. Finally, my mom's nagging got the best of me and I said fine! I'll try it! 

Took my last shower at around 4:30pm on Thursday and since then, I've been coating my skin with Cetaphil gentle skin cleanser every 8 or so hours and gently scratching the dead skin off. I use an old t-shirt to wipe off the excess with all the dead skin. Then I follow that with another coat of the cleanser, let that sink in and then cover it with Cetaphil advanced lotion to keep my skin kinda moist.

I am coming on 48 hours of not showering and so far so OK. My skin is still burning at this point but at least I am avoiding the skin moisture stripping shower. 

I don't really know if there is a benefit to not taking showers but perhaps maintaining the moisture level in my skin will help it heal faster? Here's hoping. My skin is still red as ever as evidenced below but it feels less dry and scratchy at this point... 

Have any of you all tried not showering and did it hurt/help? 

Thursday, June 27, 2013

Going nowhere fast: June 27, 2013 progress pics

I am 1.5 months into this TSW thing and I  feeling pretty hopeless. As the days go by my skin just becomes more itchy, more red, and I just feel more and more anxious about being out and about. 

My sleep is completely whacked out at this point. I have stayed up till 3, 4, even 5 am and not waking up till noon. I have trouble staying asleep and my first few hours in bed are an itch torture chamber.  Luckily I took the last few days off of work but I know things won't get better as I jump back into work. I am exposing more and more raw spots as the days go by. 

Have been trying yoga lately to calm my mind and burn some energy. I noticed some crazy sweating (or weeping?) from my neck which was quite unexpected. I couldn't tell if it was weeping or sweat and it did give me quite an itch on my neck. 

My neck has a few raw spots now as evidenced in the photos below that don't stop weeping especially when I'm sleeping. 

This whole self pity thing hasn't done much for my friendships as I feel more self indulgent and moody, perhaps annoying people unintentionally. Big Sigh!

Well I shall buckle down and hang in for the ride. Must keep reminding myself that  I will heal! 

ick. red and itchy all over. Neck has open skin now 

upper back is the worst. back of neck continues to bother me. 

Friday, June 21, 2013

Progress pics aka My skin is trolling me: June 21, 2013

Sigh. I guess I was feeling too comfortable or something. 

Two nights ago, I was feeling pretty good about my skin perhaps making a turn around. It was flaking but not really super red. I hadn't been sleeping on my regular schedule but I still was able to get my hours in. Just decided to go to work late.

Then BAM. My skin up and decided it woudl be great to keep me up all night to the point where I woke up with scratch marks all over. I scratched my jawline raw on both sides and some parts of my shoulders. I rolled around all night and any tiny sound would jolt me awake.

Yesterday at work was pretty rough as my skin just felt like it was falling off under my clothes. I had to break it to my coworker about the misery that my life was. At least he had experienced eczema and was sympathetic but said, yeah. He could tell I was not 100%. Poop.

Then this morning, to my dismay, all my redness was back in full force. It also felt in the shower like way more skin was shedding. I know shedding is a sign that my skin is turning around but that metallic bloody smell just irks me and I can never shower it off! 

At least it's the weekend and I don't have to worry about going to work for the time being but man, FML. 

Oh, the devastation. Redness back everywhere and bumps back on my tummy. ARGH. 

First progress pic of back. It looks worse than it has for the first month. 

Tuesday, June 18, 2013

Progress picture of my neck, the bane of my existence: June 18, 2013

My neck is my trouble spot. It's really hard to keep that area dry, especially at night so it seems to be the slowest to change. Whether I sleep on my stomach or my back, it always ends up wet. Here, I'm just showing what it looks like before I shower and after because it's so stark but it really exemplifies what my skin is going through on a daily basis.

Right before shower. Uh, can you tell this is a problem spot? Skin flakes. Yum.

Right after scrubbing skin off in shower. Redness right under hairline is where weeping is worst. 

Currently, just applying zinc oxide ointment from CVS to the area under my neck before I head off to work to keep it as dry as possible but even as I'm typing this now, it seems a bit humid back there. 

Monday, June 17, 2013

1 Month of TSW - changes

Yesterday was my first official month being on my Topical Steroid Withdrawal (TSW) journey. 

I suppose I should update on this past month and reflect though at this point, I'm still feeling pretty ambivalent about the whole thing. I suppose feeling this way is better than my initial despair and elation roller coaster. 

I've had to adjust my lifestyle quite a bit to adjust into the TSW lifestyle which I anticipate will be my state for at least several months. I’ll try to cover the negative first just so I can end on a positive note. 

(1) Daily schedule: 

Because my skin is so finicky, I can only be “out” for about 8-10 hours before I really start feeling anxious and itchy. “Out” can be for work, shopping, etc. Before I go “out” I must shower, moisturize, and choose appropriate clothing which normally is a long sleeve and long pants. The long sleeve should be soft enough as it doesn’t rub against my skin and generate flakes because as I’ve learned more times than once, it can disturb my schedule since I feel like I have to tear my shirt off to scratch my dead skin off. 

In addition, I can only go “out” to familiar places because driving new routes where I may feel nervous makes my whole skin tense up. Ever see a yellow light and have a moment where you’re not sure what to do and get a chill in your spine? Now, I feel that chill in all of my skin. 

(2) Sleep:

My bed is where I used to find solace at night. Now, it’s something I get a bit nervous about because I anticipate itching. In order to make my bed the most comfortable place it can be, I have bought new sheets so that I can wash my sheets approximately every 3 days and have a new set each time. 

Now, I can’t just wear any old pajamas to bed, but only a freshly laundered long sleeve shirt. I’ve experimented with sleeping in my birthday suit vs wearing a shirt and have found that if my clothes move with me, they protect me from feeling the dead skin cells whereas in my birthday suit, I feel like I’m rolling in a bed of flakes. 

The sheet set I settled on. That's not actually my bed but it does look quite serene :)

(3) Doggy: 

Sadly, I had to give my dog to my mom for the time being. I realized early on in TSW that I couldn’t hangout so closely with my dog anymore as she shed quite a bit of hair and it just added another thing that could exacerbate my skin. At first, I tried to just let her sleep by my bed in her own doggy bed but soon I realized she was getting depressed as well :( Also since I was not moving as much she was just lazing about most of the day and I could tell she was getting antsy to go out. Because of all this, I decided to let her go live with my mom where she could roam a bit more free and hang out with my mom’s dog. 

My doggy. This was her longing to be pet :T

(4) Physical activity: 

I used to be a gym rat. I’d spend 4-5 days a week at the gym. My health really started to decline this year and I got sick for a few months followed by the burn on my leg. Finally, I decided to start TSW as a part of getting healthier but unfortunately it comes along with living a life of a shut in for the most part. I learned quickly that doing a lot of physical exertion was not possible with TSW as, just like with the yellow lights, any stress could be felt throughout my skin. 

Instead, I opt for movies, computer games, listening to stand up or podcasts. On weekdays, it’s enough to keep my mind off of my skin for the few hours before bed. But, on weekends it gets quite tedious toward the afternoon. 

Lately, I’ve been trying to integrate low intensity yoga or short walks outside into my daily routine. The yoga really helps me relax and unwind and the walks allow me to get some fresh air but I still have to be wary of the sun as after a few minutes of exposure, my skin does start to feel like it’s burning. 

(5) Nutrition:

Out of necessity, I’ve really started watching what I eat. I’m opting for anti-inflammatory choices with my go-to’s being salmon, kale, sweet potato, spinach, and anything else with omega 3s. I haven’t really noticed an effect of eating poorly as I still do have random fast food runs but the switch really couldn’t hurt right? 

In addition to choosing healthier foods, I’m also taking a fish oil supplement for added omega 3 fatty acids. This is one of the more positive things that has come out of this whole adjustment. It’s really not all that difficult for me to eat whole foods with healthy compounds and I was always dragging my feet to adopt this lifestyle but if my health demands it, I have to find a way to do it. 

All in all, my life has become so regimented that I feel like I’m a robot going through the motions. I think it’s helping me to stay balanced as I go through this journey. When I think things are getting a bit too monotonous, I try to remind myself that after this is all over, I will have all the time in the world to do whatever I want with a new healthy layer of skin. 

As far as my skin goes, it seems better. I’m pretty sure my initial flare is over. Thank goodness for the reduction in redness, but my skin still itches and sheds like hell. So does that make me a pale skin now?

Friday, June 14, 2013

Sleep, progress: June 14, 2013

The past few days it feels like I am in a limbo. 

I have been mainly focused on improving my sleep habits as inspired by Jitka on the ITSAN forums. My plan is to sleep at 10:30pm and wake up at 6:30. 

First couple of days I took 2 benadryls at about 9:30 then hit the sack by 10:30pm. The first night I had a ton of trouble falling asleep and rolled around in bed for a few hours. My poor dog was also antsy as she has been adjusting to not being allowed on my bed since I began TSW so I could hear her walking around until I don't know how long. I finally went to sleep and forced myself to get up at 6:30 when my alarm went off. 

The second night was a bit more successful and I watched TV in bed until I nodded off around midnight, though when I woke up I felt super groggy. 

That's the thing with taking benadryl. The sleep is not necessarily the best rest but at least it is an escape from my current reality. 

Last night, I tried ZMA (short for zinc magnesium aspartate) which I used to use to promote sleep and healing for my weight lifting days. I was able to get a good 7 hours of sleep with the added crazy dream. Think assassins fighting assassins. 

So why limbo? 

Well, my skin doesn't seem to be changing all that much. I wake in the morning and shower, scrubbing as much dead skin off as I can. Then olive oil and Vaseline. Then I go to work and try to keep my hands busy until around 4 or 5 when my skin really begins to crawl. I frantically drive home, starting to scratch my itches and when I get home, I strip off my clothes and see that my skin is shedding. Inside of my clothes are dusted with dead skin and the surface of my skin is all lifted with dead skin. I look in the mirror and think, it doesn't look THAT red. Then I plop on the couch, watch TV and movies, play some video games and go to sleep. 

Next morning I feel hopeful that my redness is gone but after I shower and oil up, I look practically the same as the day before. 

I am learning to cope with the symptoms day to day and trying to dampen my short term hope. Almost feel like a robot these days but I guess it's better than my initial feelings of desperation. 

Neck still looking bad? How can it be.

Torso less red perhaps. Seems the same to me. Even belly button has tiny hives in it.

Tuesday, June 11, 2013

Progress post: June 11, 2013

Today started fine enough. Used only olive oil which didn't sting the skin and aggravate redness. A friend even mentioned I didn't look as red.

Skin fold under hairline always oozing still. I have been picking back there =_= Looks a lot better than a few days ago though.

Torso looked less red upon post shower application of olive oil 

But the rest of the work day was difficult. Rushed to bathroom at lunch hour and again at 4pm to remoisturize with olive oil from the cafeteria D: My skin was shedding and crawling like crazy and bone dry. I think it was because my shirt was ribbed cotton and rubbed up my shedding skin all day. Retiring that shirt for the time being! 

Tonight I will start trying to adjust my sleep pattern to 10:30-6:30 if possible as inspired by Jitka on the ITSAN forums. 

Sweet dreams all~

Monday, June 10, 2013

Another progress pic post

Today wasn't the greatest skin day again. I've started using olive oil instead of the Eucerin Professional Repair because it just caused my skin to sting way too much. Despite the rash from my makeup fiasco going down, I still have a ton of redness left as you can see below. 

One thing I am struggling with is sweating. Every time my skin is in contact with something it sweats and exacerbates itching. I am watching TV on the edge of my seat, literally! 

Red patches in my arm pit folds, they never get a chance to dry through the day.

Torso progress pic. In place of the rash are just a ton of little red bumps.

So hesitant to post a face pic. Sad red face. Upper lip is especially dry with cracking thick skin.

Today I slathered my face in Vaseline so that I could make it through the work day with some foundation on. I am using Chanel Vitalumiere and it seems gentle enough for my skin but I do look kind of like a grease ball. I lasted about 6-7 hours before my upper lip started to really dry out and I made my escape home to clean my face and reapply olive oil. 

Ah, to have moisture retention in my face again!

Sunday, June 9, 2013

Progress check -- Super allergic skin!

This morning, I woke up and instantly wanted to jump in the shower. Since I was going to see some people, I grabbed for a tinted moisturizer that I haven't used in a while, one by Chanel.

Bad idea! In a matter of minutes my face was swelling up and burning so I quickly removed it all from my face using some olive oil, but itching my face and touching the rest of my body spread the rash down. I peaked at the back of the bottle and found the culprit: Oxybenzone, a common sunscreen additive. 

My daily routine has still included using foundation as I am going to work but I should have stuck with my tried and true products and not tried taking a short cut!

Note to self: no more varying products for the time being. 

Sadly, my skin has not been kind to me this weekend. Here's some picture from my post shower fiasco. 

My neck has been burning all day! 

I just know eventually things will get better but I am terrified at the thought of being one of those slow healers! 

Friday, June 7, 2013

Skin history

I am one of those allergic people.

I suffered severe asthma and eczema from a very young age and in fact, I used to get prednisone shots weekly as a toddler for the asthma until my mom found a pediatrician who helped me get my asthma under control with a regime of Azmacort, Intal and Proventil for short term relief. On top of this, my skin was extremely allergic and prone to eczema. I suffered from eczema on my knuckles and in the folds of my skin (elbows, knees), especially during the summer and when these flair ups happened, hydrocortisone was used to battle as well as prescription moisturizer (I remember the tar smell but don't know the name). 

In addition to these drugs, my mom never let me use soap; only cetaphil cleanser. It was a constant battle until I reached my later teen years and it started to die down, but I always had my trouble spots flair up occasionally. The one that was most disheartening was on my upper lip which would get oozy and red and no matter how hard I tried, I felt that the world could see my struggles. A little melodramatic, yes, but I was a self conscious teenager and the skin condition didn't help. 

I began college without huge issues with my skin. At this point, my elbows and knees hadn't had a flair up in a while but my upper lip still continued to break out with eczema occasionally and I would treat it with a triamcinalone cream. 

One year, I became obsessive about diet and exercise and started eating "clean" -- low fat, mostly unprocessed food, and supplementing with fish oil and my skin was the best it had ever been. I attributed it to the fish oil as I took about 6000mg a day and my skin was soft and moist and had very rare eczema breakouts. But eventually, my habit died off and I went back to having dryer skin with occasional eczema issues. 

After I moved back from college, I was ok for a few years but when I reached my mid 20s, I started suffering from worse allergies, asthma and skin conditions again. I went to an allergist and he prescribed me with
(1) daily Allegra
(2) daily Singulair
(3) 2X a day Advair
(4) topical steroid regimen for my eczematic skin.

If I had a breakout, he instructed me to apply Clobatesol + Bactroban 2 times a day for 2 days, Desonide 2 times a day for 2 days, then hydrocortisone 2 times a day for 2 days. He said this was better than using a strong steroid cream for say a week straight.

At first, it worked like a miracle. By this time, my face was having eczema spots not only on my top lip but also the edge of my jaw line. Applying the steroids cleared them up really fast and my skin went back to being soft and supple.

Fast forward to this spring, perhaps the worst allergy season I have ever suffered. Despite taking Allegra every day, my skin would puff up and itch and develop eczema patches a few days later. I started having to use the clobetasol regime every 2 weeks. By the beginning of May the allergies began to resolve and my skin was feeling better. 

Then the burn happened. 

Late one night, I was heating a microwave bowl of noodle and soup. I set it on the table and sat down to enjoy it but my finger caught the edge of the bowl and it spilled all over my naked leg (I was wearing shorts). I ended up being diagnosed with a second degree burn and the skin that the hot soup had touched started to dry up and later fall off. 

My whole body went into shock after that including the skin on my face. I got an all over rash on my face and upper torso (chest, back, shoulders). At first, I thought it was just my immune system being taxed by my leg's lack of skin and not being able to heal the rash. But the rash became oozy and in desperation I applied clobetasol to the rash. A day after, my skin was better and I was relieved. But as the days wore on, my rash returned. By day 5, it was full on red and itchy.

It looked different than what I was used to classifying as eczema. The skin peeling was a lot thinner and underneath, I could see the redness being caused by my tiny red veins being visible.

This is when I turned to the internet and learned about topical steroid withdrawal (TSA). I visited and when read the "Is this you?" section, I realized YES. This is exactly what I have.

The next day, May 16, 2013, I decided to begin my journey to a topical steroid free existence. 

Wednesday, June 5, 2013

Introductory post...

My name is Megan and I'm 28 years old. I had severe allergies including very allergic skin and eczema as a child. As an adult, I had moderate eczema here and there, especially on my face and used triamcinalone to treat, but eventually clobetasol. 

This spring, my allergies were INSANE and my face and upper torso reacted accordingly and eventually formed some eczema patches. I started doing my usual clobetasol treatment for 2 days and whereas before I could last almost a month without having to use it again, I started noticing that the patches returned sooner and sooner until I couldn't even go a week without using medication to treat it. 

My leg burn with skin fully healed

Then a month ago, I burned my leg really bad to where about a square foot of skin fell off. This seemed to be a trigger for my face and upper torso to have the worst rash yet. I went to the dermatologist and all she did was to prescribe protopic as a spacer drug but still suggested I use clobetasol or desonide as treatment. In desperation, I applied the clobetasol for 2 days, but like clockwork, 5 days later I noticed the rash coming back. 

Enter I read the site and I realized this is what was happening and I decided at that point to stop using steroids. 

My latest CVS haul
I'm now three weeks into my steroid free existence which has not been the smoothest trip. I've been visiting CVS constantly and testing moisturizers to treat my ultra dry skin. In addition, I have purchased more sheets so that I can switch my sheets every 3 days, bought fragrance free detergent, and started eating primarily anti-inflammatory foods. In desperation, I even chopped off my mid back length hair because it held too much heat against my neck. 

New sheets 

Kale, Spinach, Avocado, Sweet Potato, Blueberries and Broccoli

I tried Bikram Yoga, thinking that sweating would be good right? Wrong! After the 1.5 sweat session, my skin dried immediately into a desert. 

Salmon is my new best friend. 

I take morning showers and my skin cycle seems to be:

9AM: Post shower, pat dry and moisturize happy but red skin
10AM-5PM: Drying throughout the work day, I reapply moisturizer to key trouble spots
7PM: Dinner time, my skin has lost most its moisture.
10PM: Skin beginning to be bone dry despite moisturizing
Sleep time: Skin drying and starting to shed - I take benadryl to last through the night
8AM: Skin looks like a desert and is ready to be sloughed off
Shower and repeat

Now, my skin seems to be on the mend though. Every time I slough off the dead skin, I feel like my skin appears slightly healthier than the day before. I'm hoping that this is the case and I can look forward to healthier skin very soon.