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 ;)

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.

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! 

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?!