6 month anniversary

Last night marked my 6 month anniversary of being off topical steroids! And I still look like shit! Lol. No but seriously...I wonder how long this is going to take. I've been in communication with Dr. Rapaport for the past few days. I went ahead and paid up for a consult, which is actually more affordable than one might think, but you can get all the information free from me! The consult was $500 for 2 hours of his time and we've only emailed so far (I sent him a detailed history of my eczema along with loads of pics) so I can't imagine I've made too much of a dent into those 2 hours. But considering most psychiatrists charge around 200-250 per session, this is pretty much the same cost. So this is what he's told me so far:

1. First of all, he does not believe in any alternative methods such as diet (gluten-free, dairy-free, like me), dead sea salt baths, tea tree oil, bleach baths, etc to treat TSW. This I disagree with, obviously, as I believe diet plays a major part in our skin condition. It may not affect TSW directly but it definitely affects MY eczema, which leads me to believe I may still have eczema once this is all over. I also believe the dead sea salts are super beneficial, so while I appreciate his advice, I'm taking it with a grain of salt. No pun intended.
2. He recommended 3 tepid baths a day at 30-40 minutes each "without fail"!!! There is no way in hell. I start getting itchy after 15 minutes. I have been bathing every other day and the days I do take baths on, it takes me hours to recuperate. His reason for this is that since the steroids have caused major opening and dilation of our blood vessels, the only way to counteract this is to get the skin blood vessels to constrict with cold water and ice packs. But then he said that baths are also a means of relief from the burning and itch. I no longer suffer from the burning and the itch is actually not that bad since doing moisturizer withdrawal so I'm on the fence about whether or not I should increase my bathing. Hubby recommended trying to up it to once a day and see how I feel. Lastly, when I expressed my concern to Dr. Rapaport regarding all this bathing, he said he believes I may still be in the BEGINNING of withdrawal since my skin hates water so much. If this is true, I will die. He gave me an estimate of 1-3 years to be healed based on my total usage, with functionality occurring much before I am fully healed .
3. Speaking of moisturizer withdrawal, he did recommend moisturizing but said it was not necessary.
4. He recommended getting prescriptions for drugs I already had (gabapentin for nerve pain and atarax for itch)
5. Lastly, sun will be super beneficial but he believes my skin is not yet ready for sun exposure.

This does not encompass everything we discussed but covers the major points. I will update more as I get more information. At the moment, I am to check in with him in 7-10 days with updated pictures as he cannot tell if I am getting better or worse. I feel my skin has been stagnant, with some flares in between and very little healing but am told by family that I look better. I certainly don't feel it but will keep on keeping on in the meantime.

TSW day 176

As usual, skin has been up and down. Past few days have been okay while last week was really bad. Per my husband's insistence, I am scheduling a consult with the famed TSW expert, Dr. Rapaport. That's all I really have to report for now! Excited to see what the consult will teach me, if anything. Then in one week will be the 6 month anniversary off topical steroids. Woohoo! Can't believe it's been that long already. Hoping the next 6 months are a bit easier.

Revisiting Month 1 & 2

I found old pictures!! For months, I was wondering where all the photos from my first month were. Well, they were on hubby's phone and boy, did I forget how much pain I was in back then! Hm, it's kind of annoying that the pictures don't do it justice. I was so much redder than it shows. 

Jan 31 - Just over 1 month into withdrawal

Feb 5 - my neck was basically purple

Feb 16 - about 7 weeks in. If I put my neck down, it would have been completely wrinkled like a 90 year old lady. At this point, I had severe hot/cold flashes, continuous oozing/drying/crusting cycles, and was in complete and total pain and discomfort. I would cry every single day and night, showers felt like acid, and I was essentially bed ridden. It was at this point I decided to do moisturizer withdrawal out of sheer desperation. 

Lately, I have been wondering if I should put some kind of moisturizer on my upper lip because it keeps crusting and turns into this thick, sticky, disgusting crust that I just can't stop picking off. I wonder if I keep it moisturized if that will stop me from picking it. But now, looking back at how my skin was before moisturizer withdrawal, I'm not going to do it. At least for now! :)

Flaring

Obviously because my period is coming, I'm flaring. I started taking Gabapentin again for nerve pain that I didn't even realize was nerve pain. My wrists have been hurting really badly and my husband recommended I try taking one to see if would work and it did. For those that don't know, Gabapentin in a nerve pain med given to many tsw patients. I'm also taking klonopin & ambien to sleep. Ambien alone doesn't work, nor does melatonin. Supposedly I have insomnaphobia so that's what the klonopin is for, to calm me down and allow the ambien to work. Even taking these, I still wake up a couple times a night. But at least I'm not terrified of the nighttime anymore. Still, I have to take 2 rounds of these pills because 1 dosage alone doesnt work. So I take them when Im ready for bed and if I still havent fallen asleep an hour later I take the other round. I hate that I have to take so many pills because I know they all have side effects. I just hope I'm not replacing one "addiction" with another. Looking back, I've had problems sleeping for almost 10 years and I wonder if it all had to do with the topical steroids ruining my adrenals and cortisol production. Anyway, back to the flare. It started 4 days ago. (Although I feel like my last flare never ended.) It was accompanied by lots of crying, itching, and extreme fatigue.  It's so weird because today I feel fine. I mean, my skin's beat up but I had some energy to get things done which was great. 1st pic is 2 days ago and 2nd is today:

Not as red but the problem areas remain. Yesterday, I did try out some bentonite clay that I read about on a fellow blogger's page. She had great results in closing up some stubborn wounds using it just once but I wasn't so lucky. I'm going to keep using it though and see if it improves in time. I'm also really trying to eat better. I really want my skin to clear up for this wedding I'm going to in 6 weeks. I see my functional medicine doctor this week so hopefully she has some tricks up her sleeve. Will report back. Hang in there peeps.

5 months down!!

Today is the 5 month anniversary of the day I quit topical steroids! Yay!! 5 months closer to being healed. I had a pretty bad itch attack last night (mainly hands and wrists), lasting about 2 hours but then woke up feeling okay! So no complaints here. I'm going to try and get some sun today as I feel it would be beneficial. Sometimes I know it would make my skin feel worse but today is not one of those days. I also am going to try and eat alot better. I've slacked on my juicing and supplements so I'm going to be better about that, too. Today is a good energy day. A few days ago, I was basically useless and laid on the couch ALL day long. So I'm going to try and be as productive as possible today! Hoping everyone else is having a good day too :)

Why am I oozing??

Two days ago I woke up with swollen eyes and had to peel my face off the pillow again. Haven't had to do that in a while. My skin is hurting as if Im back in month 3 of my withdrawal. Why is this happening? Is it because my 3 week liver detox ended and I reintroduced all the yummy things I had been avoiding (sugar, mainly)? Is it the Hand Foot Mouth disease working its way out of my system? Is it the residual stress from my baby's ER visit? I'm thinking it's a combination of all of the above, with diet sitting at the top of the list. Ugh. My hands are hurting the most. See pics below.

Im just so dryyyyyy. As if I just started moisturizer withdrawal. I thought it was supposed to get easier after that? Why am I still in so much pain, daily? 

In an effort to cheer myself up, here are things I no longer have to deal with:

Red, BURNING skin

Inability to regulate body temperature

Keeping my hair off my neck 

Oozing and sticking to sheets, for the most part

Crying every day, multiple times a day, in pain. Now I only cry a couple times a month.

I just want to get to a point where I feel comfortable going out in public. And can sleep without a slew of medications that are doing God knows what to my insides. The other day, my pharmacist questioned if I really needed ALL these meds to sleep? "YES, FOOL!" No I didn't actually call her a fool but like HELLO obviously there's a doctor who is specially trained in this kind of situation who called these in. If I don't take the meds, then 1) I cant fall asleep before 5-6am and 2) I hover in REM sleep, not really feeling rested when I wake up. Actually, #2 happens regardless. Will I ever sleep normally again??

Day 145 (almost 5 months down!)

Ugh... I jinxed it. Last time I wrote that things were okay. Of course things have since taken a dive. Turns out I have caught my baby's virus after all. It's called hand foot mouth disease (not to be confused with hoof and mouth disease). I didn't realize it at first, I just thought I had a little cold consisting of a headache and sore throat. Then 2 days ago I was really tired, more tired than usual. As I was taking my Dead Sea salt bath, I started inspecting my skin, as usual. I was feeling flared up and noticed these bumps on the palm of my hands but chalked it up to my eczema. I thought I could have been flaring from stress (had just returned from my first ER visit for my baby, unrelated to the illness).  Or it was bc I had eaten some junk food for the first time in a few weeks. Either way, I was flaring again. Over the course of the evening, the bumps became painful. By the next morning I realized that those bumps were not eczema at all but blisters from the virus. Of course!!!! Of course I would get this. I also have the bumps on the back of my throat which is what's causing it to hurt so bad. On the plus side, I took a 3 hour nap that day that felt AMAZING. So even though my skin feels disgusting, my psyche was okay.

Here I am 3 days ago...

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And then 2 days ago when the flare hit. Post-picking of course

It always seems we're taking 1 step forward, 2 steps back in this withdrawal game. For the first time recently I got a 2 day reprieve. Then this past week I had a 2-3 day reprieve. So far those are the only ones to date I can recall. I know I will continue in this pattern until eventually I have more reprieves than flares. I just can't wait until that actually happens. Yesterday was bad though. Psyche no longer so good. It felt like I was right back in the beginning of this process where my skin hurt like hell, felt so gross and I just cried. Sometimes you just have to cry to release the emotion caused by all this suffering. After a good cry and a good nap, I felt a bit better. I vegged all day, slept a broken 6 hours last night and am feeling okay today. Hopefully this thing is clearing out and I can start to see some healing again.