Wednesday, August 6, 2014

Day 158...My Emotional Mount Everest

Keep on keeping on...
I read on someone's blog that they're sick of hearing everyone in TSW complain and to just suck it up already.  While I respect this person's opinion, I also know that this "complaining" we do is in a safe place.  It's a place TO complain so that we don't weigh our loved ones down with these emotions that are so hard to keep positive and keep in.  With that being said, if you don't want to hear "complaining" and talking about emotions, scroll on because I'm struggling a bit today.  Losing a bit of my resolve and I got a lot to get off my chest...

When my journey started, I was super positive and happy because I'd finally discovered what had been plaguing me..KILLING ME... for years and years of my life.   I was OVER THE MOON to put this wild goose chase to bed!   I'm still very happy to know!  I'm still remaining positive, but days upon days of facing suffering and discomfort are truly difficult to digest.  I've been finding unhappy moments more frequently as time wears on and it's hard to not get sucked into bitterness and frustration.  Depression maybe?  Post Traumatic Stress?   Either way you dice it, this trauma has me trying to deal with emotions, being disfigured, and in pain... on top of still being a mom and a wife full time.  Good Lord, do I just want some rest.  Some days of nothingness.  Days where my 4 year old doesn't shadow my every move... But I digress.  In a nutshell, the last 5 months has stripped me of my pride and dignity and replaced it with pain and exhaustion.  I was quite aware of the physical, but boy did I not see the emotional until I went to the doctor, so i'll start there.

Last week I finally  made a doctors appointment to get some sleeping pills (Klonopin was a fail, btw... totally made me cuhRAZY in the head).  Leading up to last week I'd been trying to go out more and more... brave the word with my new, awful skin and plummeted self confidence. I'd made a few trips to the grocery store and some family functions when my skin wasn't hideous from a few feet away, so I felt like the ice had been broken for facing humans.  I was still getting unexplained anxiety in all these situations, but nothing I couldn't forge through.   I got a sitter for my girls and headed to my appointment alone.  ALONE!  (Angels singing)  I really thought it was going to be great...a big step back into the world!  I was excited  and happy to go alone!   As SOON as I started filling out paperwork, though, the palpitations started.  Out of nowhere, without even a negative or panicky thought.   "Oh, come on..."   Rocks formed in my stomach and grew heavy, cold, and uncomfortable.  Sweating.  DEEP breaths.  "Jen, you're FINE... You were FINE in the car." Shaking hands.   Loss of focus.  Mindlessly filling out paperwork.  I contemplated leaving.   I knew my body was remembering something and signaling a fight or flight response without my consent, but I truly had no clue why.  Even being cognitively aware of that didn't change what was happening.

As soon as I got called to the office, it went from bad to worse.  I'll spare the grizzly details of not being able to finish a sentence without a deep breath and intermittent sobs, and being looked at like I was NUT, and I'll just say that the reality of how bad my social anxiety had gotten in the course of 5 months of a horribly painful, isolating,  and disfiguring disorder came barreling at me like a freight train in that tiny, sterile office.  I was a HOT A$$ ME$$.  Truly.  I'm still not sure of what I said or what she understood, but I remember a few things vividly.  1.  Her telling me that this "wasn't normal" and 2.  Her implying I needed some "help" psychologically.

After a nearly unbearable 30 minutes, I left with a script for a benzodiazapine and a whole lotta what-the-hell-just-happened.  I held my breath until I reached the sunlight, put my sunglasses on and let go.  I cried all the way home and after I got home.  I cried for what I had just gone through and for what I had already gone through.  I cried for myself, my poor skin, my emotional fragility, my family.  I cried at the realization of what I was about to face....the assessing and fixing of my broken spirit and terrified emotional soul.  I had been so busy climbing the fierce, wild, and unrelenting PHYSICAL mountain of TSW, that I wasn't even aware of the EMOTIONAL mountain that had yet to even be SEEN.  I was scared.  And tired.  And OMG, "WHO AM I ANYMORE?"

I started to figure some things out as I replayed the whole scenario.  Piece by piece who I had become fell into focus.  The paralyzing reality of not having my security blankets (my kids and husband) to distract people's eyes and my emotions gave me great distress, and being in a TINY room with only my emotions and ME to look at was my greatest fear realized.  It triggered me into fight or flight.  I'd been a beast in my castle for SO long that I'd become feral and  cagey.   "I don't want them looking at me!!  I don't want to face how I feel!!!"  I also started to understand how I'd gotten so emotionally damaged.  Having seen my face go through hell over the last months...what it felt like to see a different, hideous face in the mirror every day was traumatic.  I lost a hold of reality and self.  It was horribly TRAUMATIC and I had no idea.  On top of that, I couldn't take care of my wifely and motherly duties for months and was just barely getting to the point of taking on what my husband took off my plate.  I'm gonna stop here because you get the point.  It was a lot....

After facing the emotional mountain and assessing it's rocky and tumultuous terrain, I have started packing my bags for the trek.  The mountain no longer looks scary, but just hard.  It no longer looks uncharted because I have my tour guide (my UHmazing counselor.)  I'm moving forward and feel a new sense of strength and purpose.  And yet, even with this huge sense of self realization, I still am not getting ANY breaks on the flare and sleep front of TSW.  The show must go on...

So, today, why am I in such a rut.?  Well, I'm just coming off of a big flare and my neck and wrist are hell...and it looks like I'm going into another one.  I also feel at a loss for what to do with my stupid skin?!  It feels better when I use nothing (for the most part) but it looks like hell! And my neck does NOT care what I do, it still wants to give it to me.  I've tried moisturizer withdrawal on my neck, and sometimes it works, but sometimes it gets SO dry and irritated that it becomes so itchy and stings when I try to sleep. Icepacks work wonders, but get warm and sweaty after a few hours which cause itching and I have to get new icepacks.  It's really, truly unrelenting.  And even though I KNOOOOW TSW is a roller coaster, it STILL makes it hard to experience the weekly setbacks!  It's like I'll never get used to it.

I also haven't slept longer than 2 hour increments for a month or so and only got 3 hours total last night.  Somehow I have NO cold icepacks right now and my neck is SO hot and inflamed.  Like, I literally have like 8 ice packs and I can find 3 and they're all warm.  Where are the rest of my icepacks??  For real.  No clue.  Sigh.  Because I've gotten very little sleep, my mind can't stay focused.  Where my mind goes, so does my house.  To hell in a hand basket.  I also heard someone say one time that cleaning with a toddler is like brushing your teeth while eating oreos.  That person was right.

Anyway, the wrist is a b, too.  The worst part of my whole body and it is showing NO signs of getting better.  Everyone keeps recommending salt baths, but my neck and face are the worst parts and that's impossible to soak.  Plus, our water is SO terrible here in TX, that you can literally smell the chlorine.  EVERY time I bathe or shower it's a huge setback.   In all, I'm struggling with not knowing.  Moment to moment I have no idea what to do with my skin.  "What worked yesterday doesn't work today" seems to be the theme.  That and "Everything makes it worse... nothing makes it better..."

If you've made it this far, give yourself a pat on the back and maybe even a glass of wine.  I really needed to just vent, so thanks for listening.  I'd LOVE to hear what your complaints are!  Misery LOVES company!

Until next time.... :)


  1. Hi there! I am so sorry you are struggling. I wish I could give yiu words of wisdom it some great advice but really I am struggling too. At 11 months I thought id be so much better. Yesterday I spent the whole day trying not to bawl my eyes out and pretend to be happy in front of ppl. So mostly I just want to say your not alone!!!!! And vent as much as yiu need as well as cry. It's good for us to get it out. We WILL get there someday and be healed and whole again but right now all we can do is take it a day at a time. Much love to yiu!! Xx

  2. Hey Jen,

    Totally can understand the social anxiety and insecurity. I haven't left home much for over a year and have not interacted with anyone new. I feel that all eyes are on me whenever I am out, eroding whatever little confidence left. School is starting next Monday, and I wonder how will I respond to being around so many strangers after one year in isolation. Rant all you want and do whatever to make yourself happier or comfortable. This shit will become history. May I know what is your steroid history like?

  3. Oregene92.... I commented on your last blog post!

  4. Hey Jen!

    Looks like we are quite similar in our usage. I used about 10 years of mild corticosteroids infrequently before withdrawing unknowingly for about 6 months before heavy usage for about a year. I too used Bethamethsone Valerate 0.025% and then 0.05% heavily twice a day during that final year. You might want to try out dead sea salt baths on top of moisturizing withdrawal as recommended by one of our fellow skin warrior Dan. I think it can really help with the withdrawal process.

    I had to endure flare after flare despite having really good skin in between which I thought was near healed. It is really sad to see good skin turn bad. I tried dead sea salt baths initially and thought that it was really good. But I got lazy and eventually stopped. Plus I hate contact with water. You might want to give it a try.

    Hope you will heal better than me! Take care.

  5. Hi Jen,
    I wish this was all over. My boys have been steroid free since May and so its almost 4 months. Man, has this been hellish. I see Chase being attacked by the itching, the ooze, the dryness, the lack of sleep. He screams in the middle of playing on the ipad and I know he must want to jump out of his skin! This is just pure insanity. I keep saying "well, it could be cancer" or something else terminal like that, but I have to admit to myself that this is REALLY REALLY bad too. The only place Chase goes now is to the gas station with his dad on Sat mornings to get a Monster drink. And poor thing has to wait in the car most times, cause his skin has blood scabs all over it.
    I dont post that often cuz I often dont know what the freak to say to anyone. I had a lump in my throat reading your blog and everyone's story makes me want to cry, but comforts me since Chase isn't alone in the world going through this insanity. The videos on you tube and the healing stories and their before and after pics gives me hope. You will be healed too. Until then, thank god there is itsan! Thank you for sharing your story Jenn. It means a lot.

  6. Hi Jen,
    I found this so hard to read, I hate to think of anyone suffering this much :( TSW is such an emotional rollercoaster, with way more downs than there are ups. you're such a positive person and that comes across when you talk to people in the community, your positivity shines through.
    I hope you manage to get some sleep soon, once I started to sleep properly I found I came on leaps and bounds emotionally.
    Sending lots of love <3

    Sarah x

  7. Hi Jen
    Good on you for going to the doctor and trying to get sleeping pills. I was told to get some as well, but I am scared of having ANOTHER GODDAMN person think I'm stupid for going off steroid creams.
    I'm not surprised you had such a strong emotional reaction in the doctors office. I have had similar reactions at random times throughout the day (though not as bad as yours).
    Thanks for sharing :)

  8. Just wanted to comment and say you are SUPER MOM!!! I applaud you. Honestly. It's SO difficult caring for little ones while going through this. I think we will all be completely different people when this is over - strong, resilient, beautiful, confident, HEALED. We will get there!!

  9. Hi Jen, So many of us undergoing TSW are right there with you. Physically, emotionally, spiritually... nothing about this journey is easy. I feel like I'm "lucky" in TSW because my skin hasn't looked nearly as bad as some people that I've seen.... but I'm still struggling big time. I'm still struggling to get through every day (sometimes every hour) intact. Like you, I was more positive at the beginning of TSW, but, the longer it goes on, the more I'm struggling with depression. I haven't been to a doctor in a while, but I had a few very similar experiences with doctors at the beginning of my TSW journey.

    So far as the chlorine in your water... look into the "Sprite Shower Filter" on Amazon:

    It's a very good quality "generic" form of the Berkey filters (which are amazing filters).... in fact, I think it's actually the same filter but without the brand name label. I live in Philly and also have TERRIBLE water and this has made a huge difference. When I take DSS baths, I fill the tub with the water from the shower filter so the bath is chlorine-free.

    I'm humbled by people like you who have children while undergoing TSW. I can only imagine the difficulties of having to take care of a child while going through this. You are an inspiration!

  10. You are not crazy! This is a really hard withdrawal. And being that it is not common, doctors really do not have a good feel for it. I see that the anxiety from going out is so common. maybe someone on the forum can do a thread on this subject. We started small. Walks around the track at the local park.. a couple of classes that put us out there around others for a few hours a week. We have been surprised by the does get better. It will surprise you too. We have a shower filter and it does take out the chlorine however we started using Aurstat which has a chlorine base. Its quite expensive through insurance but there is a nice coupon online. It seems to help us. I say go ahead and vent. Sharing is so important here. This TSW is so obscure that having others who "know" what you are going through is encouraging. Check out Juliana's blog for a great post today! Big Hugs.