Tuesday, December 30, 2014

1 whole year!!!

I can't believe I've been going through this for an entire year. Well, a year and week now because I'm a bad blogger. As soon as I get a little better, I try to forget about my skin altogether and therefore dont update the blog as often. Anyway, I flared big time over Christmas. Christmas Eve was my 1 year anniversary and I started flaring a couple days leading up to it. I was actually flaring on/off since my last post but it got pretty bad during Christmas. It could have been a number of things that caused me to flare. 1, there's the infamous "1 year anniversary flare" that everyone talks about but I'm not sure I believe in that. How could everyone flare exactly 365 days into withdrawal? Realistically, it just doesn't make sense to me. With that said, it's still a possibility. 2, stress!! This one I know contributed. Having 5 people stay at my house AND hosting Christmas took a bit of a toll on me. I haven't moved around that much since before this thing began. I was tuckered out for days after Christmas. 3, food flares...in the beginning of TSW, I wasn't sure if my diet affected my skin but I would say that FOR ME, diet definitely plays a part in how my skin looks and feels. For the past couple months, I have been really good with my diet - eating pretty strict paleo style (though I prefer to just think of it as "real food" rather than some fad diet). That means everything organic, no grains, very little sugar, lots of veggies, etc. I also stay away from nightshades. Well on Christmas, I threw all that to the wind. I ate mashed potatoes (nightshade), gluten free stuffing (grains), and lots of dessert (sugar). And let me tell you...I have not been that itchy in MONTHS. That bone deep itch which I had so gratefully forgotten about returned with a vengeance. It reminded me of how far I have come and why I need to fully commit to a healthy lifestyle. Alot of people think that diet has no part in healing but I believe that if you make your body a healthy place, that would obviously be conducive to faster healing. Or at least not stall healing. But since cutting those things out of my diet again, the deep itch has gone away. 4, pure chance. I mean, TSW is essentially just a roller coaster of flares that should eventually die off. I'm hoping, PRAYING, that the worst is behind me. I've said it before but seriously, it couldn't possibly get any worse than it's already been. Even with this past flare, I didn't ooze. So thank God for that!!! Now what I'm left dealing with is the weaning off of medications which is difficult in itself. Some days I feel fine and then sometimes I'm hit with a wave of such deep hopelessness, its shocking. Luckily, I'm able to rationalize during this time and know that it will pass (usually within hours). But those few hours are pretty dark. All of a sudden, I'll feel SO sad for NO reason. It really fuels my disdain for drugs and conventional/western medicine. I can't wait to be rid of all medications and their side effects. As for the medication weaning, I'm on about 2.5mg of vicodin a day (down from a peak of about 11mg) and 300mg of gabapentin (down from 1200mg). I should be done withdrawing from these within the next month at which point I will start weaning off the valium and ambien. The past couple of nights have been plagued by terrible sleep so that worries me a bit but I'll deal with that as it comes. Trying not to stress about every little thing!

I haven't been taking as many pictures so here are just a few.

My hands from about 2 weeks ago. They're pretty much in the same state. Can't really use them for much because the open skin makes any contact painful. Bearable though.

Back of my knees (mainly the left one) are a constant source of pain and itchiness. At least the wounds are not that deep anymore.

Lastly, my face and neck. Neck is actually pretty sore though you can't see much. My skin is dry and cracked around mouth and nose but much better than prior months. My forehead looks like I have acne but I don't care. When I was flaring, it was very red, blotchy and hot. Now my temperature is back to normal. 

So there ya have it! One year down and I'm guessing one more to go. But I'm finally functional!! So all in all, life is pretty good right now. Wishing everyone a HEALTHY, happy, and healing 2015!! 

Thursday, November 27, 2014

11 month anniversary & happy thanksgiving!

It's actually 3 days after my 11 month anniversary and honestly, I'm feeling better than I have all year! I've seen incredible healing in the past few weeks alone. I attribute this fully to the sun I've been taking. Time having passed is obviously a factor as well. "Time heals all wounds" takes on a literal meaning now! I've been getting out more - going grocery shopping, having play dates, and finally am able to wake up with the baby! I actually feel pretty NORMAL. And unlike other times that my skin has gotten a bit better, I feel like my skin is really healing this time.
It's amazing!!!

My problem areas are still the same, just lesser. My face is healing, neck is almost completely healed, hands and arms are a bit better...behind my knees hurts the most and my ankles/feet area are still quite thick and scabby. The itch is not nearly as bad as it once was and aside from the area behind my knees, I have next to no pain. My biggest problem by far is weaning off all the medication I've been taking to handle all these crazy TSW symptoms. I'm currently down to 3/4 of a vicodin a day and down about 200 mg of gabapentin (from 1200 to 1000). It'll probably be another 2 months until I'm fully off these and then I can start weaning off valium and then ambien. I am worried about the sleep but I'm just taking it one step at a time. I have to say, though, this weaning process is alot harder than anticipated. I am IRRITABLE, all the time. I feel a little crazy. Sometimes alot crazy! LOL. It's not funny, actually, because when it's happening I tend to take it out on whoever it around me which is usually the hubby. But then when I'm feeling okay, I'm able to look back and laugh at myself and how crazy these drugs are making me. I get a migraine type headache if I don't take my medicine at exactly the same time every day. Sometimes I cry for no reason. It's definitely taking a toll on me emotionally but I know it's temporary, just like my skin. I'm actually starting to plan things for next year whereas 2 months ago I was assuming I'd still be housebound in 2015.

I will post more pictures in a few days but right now I have some Thanksgiving cooking to do!! In keeping with tradition, I will share what I am most grateful for. I think it is obvious... but I am SO grateful that I am finally healing and feeling better and even more grateful to everyone that has supported me throughout this incredibly difficult year. I love you all!! 

Wednesday, October 29, 2014

10 month anniversary

Today marks 10 months that I have been off topical steroids! Actually 10 months plus 5 days because I wrote this last week and never got around to adding pictures and posting. It's been a very difficult road so far but I think I may just be turning a corner. My last flare was not as bad as prior ones. FINALLY. I've read that during TSW each flare is supposed to be less intense than the prior one but that has never been the case for me. I've basically been flaring since this whole thing started. I'll have "calm" days but no definitive breaks. I haven't had clear skin in 10+ months. My personal opinion, and I hope I'm right on this, is that I'll now continue to have my premenstrual/menstrual flare (honestly - it lasts 2 weeks, so half of every month im flaring and then the other half is a toss up) but that it will not be as bad as it's been these last 10 months. And then I think it will just teeter off. While my face is still not healed, it is WAY better than it was a month or two ago. My problem areas remain (face, neck, hands, arms, behind knees, groin, feet) with the latest addition of behind the ankles. The behind the ankles area is weird because 1) I never used TS there and 2) Dr Rapaport said it looked "eczematous". What is the difference between eczematous skin and addicted skin? Does that mean I will still have eczema once this withdrawal is over? He assured me that I would be completely clear but how can he really know? I've prepared myself for the worst; the worst being that I do in fact have eczema at the end of this. Or maybe the end of TSW will just be so long that I will be one of those cases that takes 4 years (yes, there are people at 4 years still flaring - Joey, for example) but that I'll have clear-ish skin and be functional yet not know if I'm still in TSW or if I have eczema. If I do still have eczema at that point, I will go hardcore on my diet, as I believe it can be cured that way. When I first started this process, I was diagnosed with hypoglycemia, leaky gut, and on the border of having hashimoto's. There were other things but I can't remember. Hashimoto's disease is essentially when your immune system attacks your thyroid and I 100% believe that was from the steroid use. So then I'll have the leaky gut and hypoglycemia to deal with. I have the tools to cure these things (diet, supplements, exercise) I just haven't had the motivation to do it during TSW. Actually, I take that back. I did attempt to be super healthy in the beginning of this but found that I flared regardless of how healthy I ate. So I instead opted to be comfortable (ie eat comfort foods) during this horrific process and if I have to fight my eczema afterwards, then I'll address it at that time. Mind you, I'm still gluten and dairy free. But eating gluten free out of a box is not much healthier than eating gluten, in my opinion. I think eating whole foods, REAL food, not prepackaged bullshit (google thug kitchen cookbook and watch the video lol) is the only way to be healthy. That can come later, though. One thing at a time.

Speaking of one thing at a time. I'm weaning off of Vicodin, though it's proving to be a much longer process than anticipated. After Vicodin, I'll cut out the Gabapentin (nerve pain med) and then wean off Valium. Then HOPEFULLY I can wean off ambien and be able to sleep on my own. That part is scary because as far back as college, I've had to take a sleep aid. I'm hoping my sleep issues were due to the topical steroids messing with my adrenals. Oh ya! That's the other thing I was diagnosed with - stage 3 adrenal exhaustion. I also believe this is 100% from the TS. Anyway, I had been taking 1.5 Vicodin a day and am now alternating between 1 and 1.25 every night. So I guess it'll probably be another month or 2 on Vicodin, and that is because I experienced withdrawal symptoms when I tried to just stop. But I'm taking it all as a good sign because it means less pain! I sometimes forget to even take the dose and hubby has to remind me (I start to get a little coo coo crazy if I dont take it). Before, the pain reminded me to take the medicine. I also stupidly started taking less valium. I obviously didn't learn from my vicodin experience. For the past 3 weeks, I've felt like crap - insane headaches, body aches, insomnia, sweats - and thought it was from a cold. No! Turns out it's because I cut back on the valium. Stupid stupid stupid. I went back to my regular dose last night, per my doctor's recommendation, and today I finally feel better!! So one at a time is definitely the way to go from now on.

As I said before, the sun has been super beneficial for me at this point in the game. In fact, last week was rainy and overcast here in S Fl and my skin got a worse from not being able to get my rays. The sun has since returned and my skin has gotten better. I think once I have a year of TSW under my belt, I may actually start to be functional again! It just sucks that I now have all these other medications to "withdraw" from. Though in hindsight, I wouldn't change taking them because I absolutely needed them. So it is what it is.

Anyway, pictures below.

Thursday, October 9, 2014

TSW day 290

I wanted to do another quick post (sorry, no photos this time). Last time I mentioned feeling quite a bit better lately and I think that is directly related to my sunbathing. I've been trying to get around 15-20 minutes a day, though it's hard because I live in South Florida and it is HOT. This is what Dr. Rapaport has recommended to me, though I am overdue for an update to him.

What I really wanted to discuss is another type of withdrawal. Alot of people going through TSW, myself included, take painkillers to ease some of the symptoms. For the past 2 or 3 months, I have taken Vicodin every single night. Like clockwork, by 7pm everynight, I would start feeling a burning pain in my neck. That's when I knew it was time to pop a pill. After the first 2 weeks, the dosage I was taking (5mg) was not enough. My doctor upped it to 7.5mg. That also worked but I told him that I really felt that I needed more sometimes. He was hesitant but agreed to let me take an additional half when needed. Well, that eventually turned into every night. Mind you, I was not over-medicating. I never felt high. It was definitely necessary. So anyway, for the past 2 months, I've taken about 11mg of Vicodin a night. But in the past week, I've noticed that the pain hasn't been as intense so I decided to cut back a little. 2 nights ago I only took 1 Vicodin and then last night I only took 1/2. WELL, let me tell you...that was not a good idea. I didn't even think about the possibility of experiencing withdrawal symptoms, though I knew from the beginning that I would have to deal with it so I'm not sure why I didn't think of it. After speaking to my pain doctor today, he confirmed that the symptoms I described were in fact withdrawal symptoms and that if I wanted to avoid them, that I should taper down. So that is what I intend to do and I hope the pain doesn't come back so I don't have to take any more painkillers! In case you're wondering, here are the symptoms I experienced: EXTREME irritability, (unfounded) anger, outbursts, headache, insomnia, major sweats, etc. I mean, it was so ridiculous how emotional I was last night that I would literally be sobbing one second, snapping at hubby then next, and then laughing hysterically at how crazy I was being a moment later. My husband thought I was a crazy person. And I was indeed! LOL. Anyway, I just wanted to let others know that you should definitely consult your doctor before making any changes in your medication! I know alot of us suffering through TSW have a distrust in doctors because of what we are going through but in most instances, doctors are well-trained and certainly know more than us. Unless it is dermatologists and topical steroids we're talking about ;)

Saturday, October 4, 2014

TSW day 285

Just a quick update. The last few days have actually been okay. My skin is somewhat calm, though I feel a flare coming on (my premenstrual flare). Emotionally, though, I've been feeling so much better. I obviously feel better when I look better. A lot of people get "breaks" in which their skin clears for a period of time until the next flare or cycle. I've never had one but I think I get emotional breaks instead. It's like God knows just when I'm at my wits end and decides to cut me a break. It's usually only ever a few days at a time but you know what? I'll take it. It's just enough to remind  me that I WILL get better.

Saturday, September 27, 2014

Things I can't wait to do once healed

In no specific order...

1. Go to Vegas!!! Gotta make up for lost time
2. Go shopping for NON eczema clothes. In fact, get rid of all eczema clothes
3. Have a normal sleep schedule (ie wake up w the baby)
4. Get back into shape- running, yoga
5. Go on dates w the hubby
6. Go grocery shopping myself
7. Volunteer at my baby's new preschool (who knew I'd be so excited about PTA?!)
8. Start looking for homes to buy (or build!)
9. Take baby on fun adventures every day
10. Resume laser hair removal
11. Go to church
12. Travel somewhere awesome, take road trips around FL
13. Wear my hair curly
14. Get a massage!
15. And a mani/pedi
16. Go to the beach & lay out by the pool
17. Become a domestic goddess! Cook up some delish & nutrish meals, organize my house and keep it tidy - because I'll have energy, right?!
18. Maybe go back to school? Get a master's in holistic nutrition
19. And eventually, once I've lived it up a bit, get pregnant again!

I'm sure there's more but at least there are plenty of things to look forward to :)

9 month anniversary

Four days ago was my 9 month anniversary. Sigh. I could've birthed a child by now! And that's what I should have been doing before TSW came and ruined my plans. I definitely thought the worst would be over by now but it seems I'm still in the thick of things. I have become a recluse with no desire to see anyone but my husband or son most of the time. I definitely feel depressed alot of days. Now I understand when I've read about others having suicidal thoughts. I'm not suicidal BUT I did have one really dark night when my husband was travelling recently. I was having a really bad night and thought how easy it would be to just take all my (narcotic) medications and fall asleep and not feel any pain. Of course I would never do such a thing because I actually have a great life all things considered. I just can't live it at the moment and that's beyond frustrating. I hope I don't scare any of my family of friends who may be reading this. But I need to be honest for the others going through tsw so they know they're not alone if they're going through a similar phase. Damn this thing!! I dream of life after tsw.

My symptoms this past month: itch has picked back up lately, face has been redder and oozing a lot more, my feet and knees are crazy itchy and painful, fingers have been splitting a lot so I go through about 20 band aids a day to keep them covered, and of course dry wrinkly skin. I have been wearing my clothes inside out because the seams bother me. Places like my wrist/forearm, where I tend to rip off a lot of skin when I scratch, I've been wrapping tightly with cotton cloth. I've found that compression helps the itch for me. Sleep is okay, still waking up once a night but haven't been able to fall asleep until around 3am every night and that's with all my sleep medications. I tend to get tired for a nap around 4pm but sometimes try not to nap at all in an attempt to go to sleep earlier. Doesn't work. I've also been really cranky and irritable lately. Like all the time. I think I'm just getting weary of dealing with this every day.

On the flip side, I've come across a lot of other people that have it way worse than me. I hate to say that I find this comforting. Misery love company and all. But it makes me grateful that I don't have it as bad. I was reading about a BABY who almost died from renal failure bc of all the damage the topical steroids had done. That baby has since healed!! Isn't that amazing?! From being in and out of hospitals for infection after infection and being labelled failure to thrive to becoming completely healthy with clear skin. All by just stopping use of topical steroids. Which reminds me, I'd like to share why I decided to do this. I'm sure I've written this before but I want to reiterate it more as a reminder to myself. Within the past 5 years, I noticed the steroids stopped working. I tried everything but my skin just kept getting worse. I was always really tired. Every once in a while I'd wake up with swollen eyes, which I now recognize as a sign of TSA (topical steroid addiction). When that happened, I probably hadn't used TS for a day and my body started going into withdrawal. I now am able to look back and see the signs. There were a lot of them, I just didn't know what they meant. Another one is the burning itch. That would happen every so often but again, I had no idea that it was anything other than eczema. Finally, when I started tsw by accident, I saw how the rebound affected my body and became angry. I was like "F these steroids!!" Because if that's what happens when I stopped using them, there was no way I was going to continue to subject myself to their poison. If I had continued using them, I'd still be dealing with my worsening eczema with no end in sight. I'd never be able to bathe my children, never be able to go outside and play ball bc the sweat makes me break out, never feel comfortable in my own skin. I'd live a life of constant fatigue and adrenal suppression all the while subjecting myself to other illnesses because of my lower immunity.  I'd always be sick! So... I look forward to a life WITH energy, skin that plays no role in my decision to do things, and being able to live a normal life.

Lately, I've been going back and forth between wanting to advocate and raise awareness about TSA/RSS (Red Skin Syndrome) to not wanting to even think about it. Those within our little community knows that the NEA (National Eczema Assoc.) has created a task force to "research and review" this disease. Unfortunately, there is no way it will come out in our favor. They have big corporate sponsors who produce guess what?? That's right, topical steroids. They've already stuck information about it under the "myths" section. Assholes. Because if the medical community doesn't accept this disease is real, then it will only continue to grow and get worse. I don't think it's a coincidence that adult eczema only became prevalent after the introduction of topical steroids in the 1950's. Remember when eczema was considered a childhood disease?

Anyway, I hope next month I will have some improvement to share. If not, I know that eventually I will. This WILL end. Oh! That reminds me. Dr. Rapaport cleared me for some sunshine! He said that the abrasion around my mouth seems to be superficial. So maybe I really will have some improvements to share next time! :) Pics below of the last few weeks.

And today! 

Sunday, August 31, 2014

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!!

Thursday, August 21, 2014

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.

Saturday, August 16, 2014

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?! 

Tuesday, August 12, 2014

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:

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:

Thursday, August 7, 2014

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.

Tuesday, August 5, 2014

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.

Thursday, July 24, 2014

Month 7 - Moisturizer Withdrawal Again!!!

The day I wrote my last post, I had been waiting for feedback from Dr. Rapaport. I had sent him my pictures and explained that I was reacting towards the moisturizing (didn't include the fact that I ate gluten since he doesn't believe diet plays a part in this). Some of the side effects I experienced were some that I hadn't seen since the beginning of this process; red sleeves, intense burning on my neck, oozing, increased redness all over, and severely increased itching. I heard back from him the following day saying to cease all moisturizing, that my skin is just too sensitive for ANYTHING at all to be put on it. Arrrrghhhh!!!! I wish he had not advised me to moisturize in the first place. I told him I wasn't using anything because it worsened my symptoms. With all that said, if I hadn't moisturized, there's no way I would have been able to go to my friends' wedding. So in the end it was worth it. I'm just paying for it now. The past 3-4 days have been so incredibly painful, I don't even know how I've endured it. Actually, I do. I slept through most of it. I saw a pain management doctor the other day and he is upping my gabapentin (nerve pain meds) hoping that will help with the burning pain. I was already taking it on an as needed basis but he informed me it's the type of drug that needs to build up in the system. Whoops. I also got a script for Vicodin but I took one last night and I still had pain! Wtf?! I guess it just eliminates the most excruciating pain. I was hoping it would eliminate ALL the pain. Since I'm going through moisturizer withdrawal again, I'm experiencing lots of pain. Luckily, it's not as bad as last time (see my post labeled - Moisturizer Withdrawal day 15 under popular posts) but still really hard. On the plus side, I've already notice my skin start to heal quicker and toughen up a bit (it's able to handle more itching before breaking) and redness has decreased. I've been taking 2 baths a day, as recommended by Dr. Rapaport, and this time around, I'm liking it. When I did moisturizer withdrawal last time, I wouldn't bathe every day and my neck would get so stiff, my whole upper body would be sore from not being able to turn my neck. But this time around, Ive been able to gain mobility by more bathing. Also during MW last time, I'd have crazy thick, disgusting scab build up which lead to a constant picking/oozing/re-scabbing cycle. This time, my skin doesn't have the opportunity to build up the thick scabs because I keep my skin moisturized with bathing alone. I actually look forward to baths now. After getting through the first 5 minutes of intense stinging/burning, it starts to feel quite soothing. It's the only time I feel NOTHING. Ahhhh it's so good. I've also been using Domeboro 1-2x/day. Domeboro is an astringent that helps control the oozing. I use it on my upper lip area and anywhere else that I scratched the shit out of.

Anyway, enough complaining. Here are things I am grateful for:
1. MY HUSBAND!!! He has been so amazing during this whole process. I love him so much. He works so hard yet never gets frustrated with all the slack he's picked up when I'm basically an invalid (which is pretty much all the time lately), and is always there to hug me and comfort me when I need it. Even during my darkest hours, he can make me laugh. I would say we have a really good laugh at least once a day. Those of you going through TSW know how depressing it can be and sometimes it's hard to even smile so being able to laugh feels so good. It reminds me that there are good times ahead.
2. My husband. Lol. Seriously, he is the reason I am able to get through this.
3. My health. This is a funny one because obviously I am sick. I look in the mirror and I see a sick person. But I am not dying, I don't have cancer, my son is healthy, my husband is healthy, what more could I ask for? One day I will be done with this and I will be stronger for it.
4. ITSAN. I don't participate too often in the forum but I know it's there for me if I need it. What better place to get information than from other people going through the same thing?

Picture update:

These first 2 pictures are from a couple days ago after an itch attack. See the oozey part at the bottom of my neck? That's the part that has been killing me lately. It's weird how the places that hurt the most are barely visible.

The next 3 pictures are from today. Although it doesn't look much better, it FEELS better. No oozing! And that's all I care about right now!

PS- Today marks my 7 month anniversary since quitting steroids!!!