Saturday, May 24, 2014

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 :)

Friday, May 23, 2014

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??

Sunday, May 18, 2014

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...

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. 

Wednesday, May 14, 2014

Doing okay

It's been 2 weeks since my last blog post. Alot has happened since then. As usual, leading up to my period I flared horribly for 2 days with lots of crying and despair. I always feel like I can't take one more single second of this torture during that time of the month. It feels like it will never end, I will never heal, and all of this is for nothing. But then my period leaves and I feel okay again. Skin is SLOWLY healing since then. Those 2 days were brutal though. Elephant/lizard skin with uncontrollable itching and no sleep whatsoever. Nonstop crying. Sobbing. Ugh. I hate it all. Now I would pinpoint my worst areas as my face (specifically, above my lip and each side of my chin) and my hands (specifically, my wrists now). My neck is healing, though still itches daily. I need to start taking some sun but it's so freaking hot outside that it irritates my skin too much. I should try the early evening time.

Anyway, things that have improved: itching overall has definitely lessened since doing moisturizer withdrawal. I had a bad week when experimenting with Dr. Fukaya's clofibrate ointment and wonder if I should give it another shot eventually but for now, Im sticking with MW. Redness is definitely better. Skin is now a blotchy pink. Overall, I think the worst of this process is behind me. That doesn't mean that I don't have some hard times ahead of me yet but at least I know when to expect them.

Oh, besides my menstrual cycle, STRESS makes me flare. I mean sometimes I can definitely link my diet to my flares. But stress makes me flare immediately whereas diet is kind of a guessing game bc of the time difference between eating and flaring. My most recent experience with this has been my son getting a case of Hand, Foot, Mouth disease. It started with a fever last week and turned into a full body rash complete with blisters and major crankiness. As soon as I felt the heat on his forehead, the itching started (for me, not him). My poor baby. He's such a champ. He can take pain much better than mommy. So we're still dealing with that and for a little bit, we were worried I might catch it. It is mostly a children's disease lasting about a week but adults with compromised immune systems who haven't had it before stand a chance at catching it. Luckily it seems I haven't but I did get the headache & sore throat portion. Sigh. It never ends. Oh well, we're all champs around here so we'll get through it.

On a positive note, have I mentioned how grateful I am for life in general? I know one day this will be behind me but I will be left with gratitude. Gratitude for the people around me with whom I have been blessed, grateful for my health, and just grateful for all the little things that I once took for granted. Before this, I would have looked in the mirror and considered myself an average looking girl, even called myself fat or gross at times. But after this, I think I will be able to appreciate my beauty and my body for being amazing and just mine. After all, if given by God, how could it not be beautiful? That's another thing. I want to get closer to God. Like alot of other people suffering through topical steroid withdrawal, I have spent many sleepless nights or crying itching fits praying to God to rid me of this poison. And if it is not His will to do so yet then PLEASE give me the strength to get through this. And so far, He has. I'm here, aren't I? So after this, when I'm actually not embarrassed to leave the house, I'd like to join a bible study and start attending church. Actually, there are alot of things I want to do when this is over! Yoga, beach, take my baby boy on fun adventures every day, and let my husband sleep in again! Oh boy, I can't wait.

On a less positive note, I missed 2 baby showers and 1 bachelorette party these past 2 weeks. Bummer. I have another baby shower and bachelorette in a few weeks and a wedding the month after that. I really really really want to be able to attend ALL of these. But at the very least, I must attend the wedding. So I'm hoping at least my face clears up by then. If only I could just stop picking the scabs!!! Does anyone out there have tips on how to avoid the picking?

Will post pictures next time. Happy healing!

Thursday, May 1, 2014

TSW day 128 (I think)

Okay, so the clofibrate was a fail. I guess what works for one doesn't necessarily work for another. I used it for 5 days on my fingers, top of my hands, and about an inch of my wrist. On the last day, the application burned so bad that I though "F this"!!! If I hadn't noticed improvement yet, I didn't expect to and might as well go back to full MW. Unfortunately, the next few days my hands hurt like crazy. I definitely learned my lesson!
On top of that, my energy levels have returned to normal (low). I'm going to try and look at it in a positive way and just assume that that's what I have to look forward to in the future. I'm guessing I'll have a few days here and there where I feel really energetic and eventually there will be more of those days than sleepy ones. All in God's time.
Also, I'm doing the liver detox per my functional medicine doctor. Can't say I've noticed any difference, good or bad. The shake I have to drink is disgusting and I have to add so much fruit & stevia just to get it down that I almost feel like it defeats the purpose. I also start my week of vegan eating tomorrow. Not exactly looking forward to it, though the prospect of eating lots of carbs is exciting. That also means I have to drink this shake 3x/day....yuck.

Here are some pics of the last few days. My hands have the texture of sandpaper and good ole elephant skin.

I can't stop picking the scabs above my lip!! So now I've taped gauze over it in an attempt to let it heal.