TSW day 251 - picture update

Well, our vacation did not go as planned. It turns our my worries about bathing were well founded, though misdirected. I'm 5'8-5'9" tall and it seems too big for standard size tubs. But the tubs at my mother-in-laws' were not even standard size. Apparently the people who lived there before were really short and the house was made accordingly. Even the countertops in our bathroom were really short. How did I never notice this before? Probably because I never actually took baths before this whole ordeal. So this is how it went... Arrive at house. Put baby to sleep. Go to clean tub. What? Tub only comes up to my shins. How is this going to work? Whatever, let's jump in and find out. I can only extend my legs if I'm sitting up straight. If I want to submerge my neck/face, I have to curl up in a ball. This wouldn't be a problem if I wasn't flaring because when I'm flaring and I stand up in the bath, any open wound is brutally attacked by the air. So I essentially had to bathe in sections which meant that every open wound was assaulted about every 60 seconds because I had to wriggle around the tub to submerge every body part. I quickly pick out any lint that is stuck in my wounds, as that is what I do in the tub, because if I dont then when it dries it will bother the heck out of me and I will rip it off along with any skin that has adhered to it. So doing it in the tub is better, less damage. The next morning is the same routine except now I'm aware of the torture that lies ahead (okay, I'm being a little dramatic but that's what it felt like). I decide to shower instead. Big mistake. HUGE. The water pressure is amazing at the house and usually I love taking showers there but you can imagine how that feels against a million little cuts and open sores on my skin. I was literally covering my mouth and screaming in pain as I quickly did my thing. Within 2 minutes my husband ran in the bathroom asking if I was okay. I was sobbing. How did he hear me?? I thought I was covering it up pretty well. I guess in older homes, you can hear through the vents so he heard me and came in to support me. Aw. So now showers are out. Later that day, I went to the bathroom and started to panic about the bath I would have to take later. Later that night, I DID panic after that bath. I think I had a legit panic attack. I was crying hysterically and felt like I was breathing out of a straw and sounded like a dolphin gasping for air. I really did not want to bathe in there again. Ugh, why am I so high maintenance? The next day we checked into a hotel. And guess what? The tub there was not that much bigger. Luckily, it was 2 inches taller so it almost came up to the bottom of my knee. At this point, I would take anything but the tub at the house. But now I was in a full body flare. Wonderful. And because I had to bathe at night and the baby was asleep in the living part of our hotel room, I had to creep in there in the middle of the night and hope that the bath I had filled with scalding hot water before he went to bed is still somewhat warm. And no, the bathroom was not attached to the bedroom. Needless to say, all the above equaled one stressed out Karina. I believe that was the cause of my full body flare. I mean, I'm like hypersensitive right now so of course this would stress me out. My skin was weeping again, was in incredible pain, and I would rip it apart every night. I remember on the flight over to NY thinking that my skin seemed to be healing. Damn.

I cried alot this past week. Like 2-3x/day. My skin felt like it was worse than it had ever been. For the first time during this whole withdrawal, I doubted myself. I doubted what I was doing. Luckily, my husband is completely supportive and told me just what I needed to hear to remind me that what I was doing was the right thing. That in the end, it will all be worth it. Thank God for him. Anyway, we ended up leaving early because I was just a hot mess. I had intended on toughing it out but on the 4th night, I had a bath so bad that I knew I couldn't take it anymore. I couldn't do that for another 2+ weeks, 2 times a day. So my wonderful, amazing husband took me home. OMG, I missed my tub!!! I never realized how big and beautiful it is. Oh, I love that tub. LOL. So now I'm home and my skin is SO much better. It's crazy how quickly it changed once the stress was removed. Yesterday was a good day. If I had to quantify, that would be the 4th good day in the past 6 weeks. Which is not so good. But it's okay. The full body flare seems to have receded and I'm left with localized flares in the regular spots. Above my lip, chin, neck, wrists, top of my feet, back of my knees. Unfortunately, I'm about to enter my premenstrual week where my skin always gets worse. But at least yesterday was a good day and today seems to be a good day. I need a good day here and there to remind me that my skin is capable of healing.  Anyway, here are some pics of the past week and a half.

Oh, look what I found at the house in NY! I refused to touch them. Made hubby collect & trash them. This wasn't even all of them. They kept popping up everywhere. 

This picture is blurry but shows how wet my face was

These little splits hurt way more than seems possible

And today. As you can see, less red, less open, less wet. More happy :)

Oh, and a couple days ago was my 8 month anniversary off topical steroids! Hoping the next 8 months are not as bad as the first!!

TSW day 241

Feeling better since my last post. My skin has stopped weeping for the most part. My "mustache" area remains somewhat raw but it was like that before too. It was one of the areas where I used the most topical steroids so it's to be expected. I feel like the detox from moisturizing is over and that I'm just experiencing residual effects from this last flare. I still feel super dry after a bath but it doesn't feel like I'm being stabbed by 1000 knives when I stand up in the tub. It no longer burns intensely when I submerge in the tub either, unless I went crazy itching somewhere immediately before. I still feel pain but it only gets really bad towards the evening (no idea why but it happens like clockwork). My neck, of course, is the worst area pain wise. It's the only area that hurts consistently throughout the day. Other areas, like the top of my feet or back of my knees, get really sore but only if I go crazy scratching them. My neck, though, hurts even when air touches it. It's weird bc cold air hurts it but an ice pack soothes it. Why is that?? Also interesting - I no longer feel so hot that I need to keep the house frigid. In fact I am usually the one raising the temperature a degree and then cuddling under a blanket.

I'm still finding comfort from my 2 baths a day. I think this is a contributing factor as to why I was so uncomfortable the first time I did moisturizer withdrawal. I would bathe every other day but felt so stiff and dry. Then I would itch like crazy, ooze, dry, crust, and develop thick scabs that I would pick at only to reveal raw, unhealed skin underneath. With my 2 baths a day, it never gets to the point of building a thick scab. I know a lot of people benefit greatly from letting their skin dry out by not bathing every day. I am not one of those people bc when I have scabs or dried ooze, I feel dirty and get really grossed out and feel the need to "even out" my skin by scratching off the scabs. So I'm just going to listen to my body and continue bathing 2x/day until I find it unnecessary. Another improvement as of today - I'm able to crack my neck OUTside of the bath. Ahhhh freedom. Mobility is really taken for granted until you don't have it anymore.

In other news, I'm gearing up to travel again. My brother-in-law just returned from Afghanistan so we're heading up to NY to welcome him home. We are so thankful that he returned home safe and sound. Since I've already travelled once during TSW, I'm not really worried about doing it again. The only concern I have is having to share a bathroom at my mother-in-laws. I'm admittedly kind of high maintenance. Thinking about other people showering in the same space I have to bathe really grosses me out. Obviously I will clean the tub before each use but still... Here at home, I have a tub separate from the shower. Whatever, I'll get over it. I'm excited to see my family up there and a few friends hopefully. Obviously only the close ones that are aware of my condition and willing to leave the city to come visit me in the burbs :).

EDIT: I wrote the above yesterday morning. Since then things have gone downhill again. Jeez, this is such a roller coaster of emotions. I had 2-3 good days at least. A good day right now consists of having a good nights sleep the night before with only one wake up, and then several hours of productivity (house chores) accompanied by little to no pain, and lastly a bath that doesn't hurt like crazy. Even on these good days I ended up napping for an average of 2 hours each day. And then I'm kinda done for the day bc the earlier productivity used up all energy reserves.

So there ya have it. Back at square 1 for now. Too tired to post pics, will do so next time.

TSW day 236 / MW day 28 - picture update

So I'm flaring like crazy. Last time I mentioned the nightshades and thought that was the cause of my flare that night. But now I realize that couldn't possibly be since I have been flaring every night since then. It's like nighttime hits and my skins decides to start weeping. Literally, dripping ooze. It smells and feels disgusting. I feel like a sticky, gooey mess. I've been waking up every day with swollen eyes and tons of gunk in them. My sheets get covered in ooze and have to be changed daily. Because of all this, I'm an emotional wreck right now. I don't understand how a person can sustain this kind of life, day after day of pain and discomfort. Even worse, I don't know how long my husband can deal with it. He is basically my lifeline. But that's alot to put on someone else's shoulders. He maintains a successful business, takes care of his ailing mother, takes care of our rambunctious 2 year old, and on top of it all, takes care of his sick wife. He is a fucking saint. As I write this, I'm crying. I don't want to do this anymore. It's only been around 7.5 months and I could potentially have another year or more to go. Jesus, help me.

I put on a brave face for all my friends. My family sees me break down though. Yesterday, 2 of my girlfriends came over with their kids so at least my kid could socialize a bit (he obviously doesn't get out much). One of them had a newborn and was of course super tired from being up all night with the baby. I made us all brunch and just that bit of exertion rendered me useless the rest of the day. I wanted to help her with her older child who also needed attention but every time she asked her mommy for something, I couldn't move. I have NO energy. And it's not from lack of sleep because thanks to my slew of medications, I'm able to sleep at night which alot of TSW sufferers are unable to do. But not only do I sleep at night, I sleep in the afternoon and sometimes in the evening too. I sleep SO much. Maybe you're thinking "well, all that sleep is making you more tired." No. There are days, though few and far in between, where I have energy and don't need to nap or sit motionless on the couch for hours. On those days, I'm able to do the dishes, laundry, cook dinner, change diapers, etc. I never know when these days will come and they seem to be coming less often. I feel like I'm getting worse. According to research, each flare/cycle is supposed to be less intense than the last one. This has never been the case for me. I have never had a break (a period of calm skin) like others have had. I'm starting to see other cases like my own. People who get worse over time. I write this blog in order to look back and see how I have progressed but also for others to find and hopefully find solace in. I try to find people who are further in the TSW process than myself, that their skin looks like mine, to try and make myself feel better. "See, Karina, they looked like you and they're getting better." I'm starting to freak out. I know this is just part of the ebb and flow process. One step forward, two steps back. But what if I'm a rare case that takes 5 years to heal or something crazy like that?!?! UGH.

Okay, here are some pics of the last few days. I only take pics of my face and hands because that is the only part of my body that is not covered. But most of my body is covered in eczema. My arms, feet, ankles, and back of knees are bad. Ill try to takes pictures of those areas for my next post.

This is my face AFTER a bath. It always looks better after a bath. I look like the Joker from Batman. :(

Neck. After bath.

Sausage fingers! But the swelling finally came down enough that I could get my wedding rings off. I had been using my ring to scratch so I really needed to get it off. It would leave gashes of broken skin. Mind you, I could get my rings off during my entire pregnancy but couldn't get it off for months during TSW.

I use the front of my hands to scratch because they're so rough. Better than my fingernails. Though take a look at my nails, they're really short, yet they still cause massive damage.

The palm side of my fingers are perpetually wrinkled and dry.

My sheets after ONE night. This is embarrassing but must be documented.

My face is my biggest issue. Obviously, the ooze needs to stop. OOZE, YOU ARE UNWANTED. BE GONE!!! Lol. But seriously. It's been months and my mustache area remains raw and unhealed. Throughout the day it scabs, collects lint, and then by nighttime is wet and dripping ooze. At that point, I can literally roll off the lint and dead skin. Dr. Rapaport said it's not infected but then when will it go away?! 

TSW day 232 / MW day 24

I guess I'm starting to calm down from my monthly menstrual flare. I say "I guess" because I also got nightshaded so that could have aggravated my skin. Nightshades are a group of vegetables that include peppers, tomatoes, white potatoes, eggplant, and goji berries. It is a rare allergy/sensitivity but more common in people with eczema. I had always suspected I was sensitive to nightshades so have avoided most of them (except for tomatoes about 1-2x/month) for this whole TSW process. This past Sunday, I had family over and my grandmother unknowingly added some green pepper to the rice & beans my mom was cooking. Later that night, I was in a great deal of pain, had a crazy itch attack and was dripping ooze from my face, neck and arms. I thought it was strange because typically during my monthly menstrual flare, it starts off really bad but then tapers off as my period comes and goes. I had already went through the worst part of this flare when I had the crazy itch attack so I called my mom and asked her if she put any peppers in the food (I found half of one in my fridge which I hadn't bought). Turns out I was right so nightshades are definitely out for the foreseeable future. The reason I call it getting nightshaded is bc thats how I refer to when I get "glutened" - when I unknowingly ingest gluten or food that has been cross-contaminated with it. And I always know when I've been glutened bc I usually fall asleep within 30 minutes. It's like all of a sudden I'm so tired that I must sleep immediately. And it's usually a short nap. So weird... maybe that's why I slept for 2 weeks after the wedding. Because if a mere cross-contamination leads to a nap, an entire slice of pizza could have resulted in weeks of fatigue. Whatever, who knows. This whole process is speculation, really.

Speaking of which, I saw my psychiatrist today who prescribes me my ambien & valium. He started questioning the validity of TSW. I don't think he necessarily doubts it, he just stated that there are no actual medical studies that prove it. Okay, fine. But there ARE many case studies and research articles. Topical steroids were introduced in 1952 and was considered a great milestone in the dermatological community. It offered treatment to an otherwise untreatable disease, or so they thought. The first report of adverse effects of the drug occurred only 3 years later in 1955. Now, the NEA (National Eczema Association) has designated a task force to investigate the nature of TSW. I'm hoping that they will conclude that sufferers like myself do in fact have "addicted skin" and not just chronic worsening eczema and change their stance on the proper treatment of eczema. As of right now, their website says there is no cure and the only treatment is steroids. Change needs to happen somewhere, I'm just not sure how I can help it happen. I don't think all of us in TSW telling our derms that they're wrong is going to do anything. Nor do I think awareness alone is going to change much. So what will?? According to Dr. Fukaya (a doctor in Japan who has treated many patients with TSW), change will not happen soon unfortunately. See his post about it here - http://mototsugufukaya.blogspot.com/2014/05/aad-american-academy-of-dermatology.html

In my last post, I cross compared some of the side effects of the topical steroids to the side effects of TSW. Looking back, I realize I wasn't as descriptive as I should have been. The connections that I recognize immediately because I'm going through it may not be as easy to recognize to the layperson. So let me clarify a bit. The way these topical steroids work is to target the inflammation which causes the redness in eczema. It does this by constricting the blood vessels to appear smaller (vasoconstriction) and therefore appearing to clear the eczema. Think of it like a magic trick. The eczema is not actually going away, it only appears to. When the steroids are discontinued, the blood vessels become incredibly enlarged (well, they don't "become" because they already were, we just couldn't tell because we kept them at bay with the drugs), causing the redness I was referring to. At least this is my understanding of it. There are many additional side effects I left out because 1) I wrote it up quickly and 2) I don't intend for this blog to be misconstrued as medical advice. No matter how much research ANY of us do, we are not doctors and cannot advise others as to how to go about this process. Be weary of anyone trying to tell you exactly how you should handle your withdrawal process. Every single one of us have a different body chemistry and no 2 of us go through this in the same way. We may have similar side effects and experiences but that certainly doesn't mean that what one person does will work for another.

If you are interested in reading some of the aforementioned articles, please visit:
http://www.itsan.org/resources/research-articles/

Also, a very information e-book, written by Dr. Fukaya and featuring other doctors' findings as well, has been translated into english and can be found here:
http://topicalsteroidaddiction.weebly.com/

Side effects of topical steroids vs symptoms of red skin syndrome

I'd like to start off by saying I'm feeling alot better today. After I wrote my last post, thing went downhill even further... I had the most excruciating pain ALL day long. I was literally like a crackhead in withdrawal...my whole body was shaking violently, couldn't move, was freezing & burning up at the same damn time, and the pain was indescribable. The only pain I've experience that was worse than that day was labor. Seriously. And because my doctor said I could only take 1 vicodin a day, I waited all day long until I put the baby to sleep to take it. Once it finally kicked in the relief was amazing. OMG. Why didn't I just take 2 that day?!

Anyway, I'm angry that I'm going through this because of certain doctors negligence. I don't blame or distrust ALL doctors but I'm definitely more weary of them now. I had one dermatologist tell me that I could use this one particular topical steroid (class 1 - will discuss below) every day and be fine. I was always prescribed this stuff without being warned of their side effects. I'm angry that I'm still in pain from moisturizer withdrawal. (I think? Could just be coincidence and I was going to have the biggest flare yet but I doubt it.) And I'm angry I can't live a normal life. SO...I wanted to do a comparison of the side effects of topical steroids in comparison to the symptoms of Red Skin Syndrome (also known as Topical Steroid Withdrawal) to warn anyone that is currently using topical steroids, considering using them on themselves or their children, or are going withdrawal already. There are 7 classes of topical steroids with 7 being the weakest and 1 being the strongest and most potent. Class 7 is your over the counter hydrocortisone. For reference, I have used topical steroids from every single class and had been using Class 1 for YEARS. Thinner and more sensitive areas of the body like the face, armpits, or groin are supposed to be treated with mild topical steroids. Well I used my class 1 on my face sometimes which is probably why my face is so affected right now.

SOME of the possible side effects with long term use of TS (local and systemic):
1. Stinging and burning on application which is supposed to lessen over time
2. Thinning of the skin
3. Discoloration of skin (including redness, spider veins, bruising, and stretch marks)
4. Potential allergy development
5. Fluid collection in legs
6. High blood pressure
7. Bone damage
8. Cushing's Syndroms
9. Adrenal gland suppression
10. Enlarged blood vessels
11. Higher susceptibility to infection
12. Glaucoma

Symptoms of RSS (I have personally experienced 1-9 and have read about others who have experienced 10):
1. Uncontrollable, spreading, worsening eczema
2. Discoloration of skin - redness, specifically
3. Hot, burning skin
4. Oozing
5. Shedding, flaking skin
6. Raw, painful skin
7. Uncontrollable itching
8. Inability to regulate body temperature
9. Edema (swelling)
10. Cataracts

As you can see, some of the side effects of topical steroids are equivalent to the symptoms of Red Skin Syndrome. Hmm, imagine that!

Lastly, a photo of my flare 2 days ago. I look dryer now but pretty much the same.

TSW day 225 / MW day 17

I'm 7 months in and flaring hardcore right now. After the wedding, I basically slept for 2 weeks straight. I would sleep my broken 8 hours at night, then a 2-3 hour nap around dinner time like clockwork (I missed dinner with my family every night of those 2 weeks, nevermind I was supposed to be cooking it!), and then another nap around 9pm for another hour or so. Crazy amounts of sleep. But it felt so gooooood. Slowly it turned into one nap either before, during or after dinner time. That nap has stuck around for now. I obviously need it so Im not fighting it. During that sleepy time, my skin was bad but nothing compared to what it is right now. I have to remind myself that Im not even 3 weeks into moisturizer withdrawal and unlike many others who do moisturizer withdrawal, I seem to take a longer time to heal from it. It happened the first time and is obviously happening again. But now my period is coming and as usual with that comes intense flaring. This time around it's worse because I'm oozing and itching like crazy. Oozing so much that I literally have to peel my clothes off because they are sticking to my skin. Oozing so much that I have to peel my face off the pillow every time I turn over. My white pillowcase is yellow from ooze after just 1 night on it. I have to change my sheets today even though they were just changed yesterday. Ugh....it feels so disgusting to be so raw and have ooze literally dripping down my face into my mouth. And then not to be able to stop scratching the already raw skin. I thought my skin was on the up and up but that was clearly before the hormone change that accompanies my menstrual cycle. Actually, I know it was on the up and up because Hubby just told me that I had 2-3 days of good sleep, good energy, and good morale prior to this flare. It's always hard to differentiate between flare and non-flare because my skin never clears up in between. It's kinda of like...bad and worse. But anyway...it started 4 days ago. On my birthday. The pain that had slowly been decreasing returned with a vengeance. I cried at my birthday party. Twice. Because I was in so much pain and I just couldn't hold it in anymore. It's so weird but I never have severe pain in the mornings or early afternoon. It always starts late afternoon to evening time. It's mainly my neck that is in pain and when it feels like that, even the air hurts. Literally. Air is painful. So my current regime of meds is as follows. 1200mg of Gabapentin broken into 3 doses throughout the day (300 at wake up, 300 at dinner, 600 at bedtime). Haven't noticed any difference in upping the gaba but the pain management dr I'm seeing thinks it may help with the "burning pain". So far, it hasn't. 20mg of valium an hour or so before bed (though I usually take them as I'm getting in my PM bath) and 10mg of ambien when I'm ready for bed. Vicodin as needed at night though I've only managed to NOT take them 2 nights. And I just got an increase in the Vicodin bc it was barely taking any of the pain away. I explained to the doctor that if on a scale of 1-10 my pain was a 10 then the vicodin brought it down to 7-8. Not good enough. I do realize that at the end of all this, I may very well have a problem getting off all these meds. But I have weighed the risks and obviously decided it's worth it. I just need them to get through this time because I can't handle going through this without medicine. It's fucking awful. I can't even hold my son right now because it hurts too much. I don't let my husband touch me because it hurts. Our hugs consist of me resting my forehead on his chest because his touch feels like fire to my skin. I can't stop shaking either. I'm unable to regulate my body temperature again. One minute im burning up and the next im freezing. Or better yet, my top half will be on fire while my bottom half is freezing. My entire body is currently covered in "eczema". I even have it on my feet where I NEVER had eczema before, nor have I ever used topical steroids there. This withdrawal process is such a bitch. Worst areas in order of severity are my neck, face, forearms, hands, armpits, feet, behind knees and groin. Anyway, I don't feel like uploading pics. I don't feel like doing shit. That is all.