A Recap of Everything

Since I'm restarting this blog after a 3 year hiatus, I feel that giving a quick recap might be useful.


Here's a barebones rundown of my TSW history:

• Sept. 2011: Prescribed steroids for skin rashes on my back, arms & legs. Started with orals (Prednisone), then was prescribed topicals (Triamcinalone). After just a few weeks on steroids the rashes spread all over my entire body.
• March 2012: I began a brief TSW of 3 months duration, however I didn't stick with it because I had only used steroids for a short time and didn't think I could possibly be addicted to them already.
• June 2012: Began using steroids again. Used Topicals, Orals and was also given shots (Cortisone).
• January 2014: Began my 2nd TSW, which lasted almost one complete year.
• December 22, 2014: Used Topicals (Triamcinolone) for 2 weeks because my skin had become so terrible and I still wasn't actually certain that I was going through TSW or if I had some other type of issue. Worst mistake of my life!
• January 2015: Began my 3rd TSW (my worst TSW yet).

That brings us all the way to today (approaching three years since starting my 3rd TSW).

I'm back

Hi there, TSW community.

It's time that I write a follow-up to my last blog post and update everyone on how things have been since Sept. 2014.

To be honest, this is a difficult post for me to write. I've known that I would need to write about it eventually but have been putting it off out of fear and embarrassment. And emotional fatigue.

First, I should say that my life is certainly in a better place now than it was back then. But, if I left it at that, I would be leaving out a lot of important information.

The truth is that, after my last post (1 full year into TSW), I ended up using steroids again for 2 weeks. I used them around Christmas (December 20-31) 2014 because I was suffering immensely with my skin. It was a choice that I made out of desperation. My skin had taken a huge turn for the worse during the fall of 2014 and I was forced to quit my part-time office administration job. I also had to take 6 months off from teaching piano. I was in such severe pain that I could no longer function.

Unfortunately, my decision to use steroids again was a huge, disastrous mistake. I then went through yet another withdrawal that was 10x worse than the previous. And I even had to live with my parents for a month or two.

I am still not fully healed. I have good months and bad months even still. Good days and bad.

____

Writing these words is deeply difficult for me. I believe that it's difficult for me to write because I'm still trying to comprehend and make peace with the fact that this is (and has been) my life for such a long time.

Although I've experienced a lot of personal growth and, quite honestly, am thankful for the difficult journey, I feel a very real sadness when I stop to think about how it's still dragging on even now.

My journey through severe eczema and TSW has taken up the majority of my adult life so far. I've been struggling immensely for 7 years now and, although I've experienced some healing (especially from my very worst times), it is still a daily battle.

I am hoping that blogging about it will perhaps be a form of therapy for me again. At this point, it's difficult to talk about my issues with others because I feel like it's extremely old news to everyone else. However, I think that it would be healthier for me to have an outlet to process my own thoughts and emotions surrounding this. More soon, hopefully.

Stagnant.

Things have been pretty stagnant for a while now.  Besides a few flares, my skin has looked basically the same for 5 or 6 months now.  I'm starting to get very frustrated with things.  Back in April, I was ecstatic to be looking and feeling this good because it was so much better than the first couple of TSW months.  But 6 months of feeling/looking this same exact way.... it's too much.

I have had a handful of "good days" (days where my skin wasn't a huge bother during the day & I felt energetic) but, for the most part, I've had a pretty constant run of "bad days" (in which my skin was nearly-always a bother, constantly on my mind, & low energy) for a while now.

What confuses me is that I only used steroids for about 1.5 years.  They say that healing from TSW should only take about 10-30% of the time that you used steroids.  So why am I already at 8.5 months and still feel like I have at least 6 months until my skin can recuperate fully?  Perhaps it's because I had a course of oral steroids and 3 steroid injections on top of the topical steroid usage (all within a year and a half)?  Perhaps these are the reason that it's taking my body so long?

My original rashes (pre-steroids) appeared on my legs & back about 3 years ago.  (The rashes only spread to my other areas after the oral & injection steroids.)  Well.... these original areas have been mostly-healed for MONTHS now.  It's my face, neck, chest & arms which are still my worst areas.  (As a note, my arms/hands are the least bothersome for me that I hardly ever mention them... even though they're not pretty).

Well, enough talking about things.  Here's some pictures taken over the past few months.

This is what my neck typically looks like during a flare.  Lots of bumps under the surface of the skin.

Very sensitive.  Even the smallest hair touching my face/neck drives me up a wall!

This is a normal day.  Just a really flakey face and a pink neck/chest.

I considered this an okay-looking day.  But I remember feeling extermely hypersensitive this day.

This was a flare.

Looking paler/smoother.

I miss having smooth skin on my hands.  They used to look feminine.

This is a typical day of what my arm looks like.  Still have a "pink sleeve."

My hands usually look like this.  Sometimes they look worse but it doesn't usually last very long.

This was a good day.

Not a good day.

I was happy that my chest was looking paler, but upset that my face was so dry that morning.

This was a really good day!  My face was dry but my skin didn't bother me very much at all!!!  We actually ate brunch at a restaurant!  I was able to find "acceptable" food on the menu!

This was two days ago.  One of my piano students asked if I had gotten sunburned. :-/

 Meh.

Currently

I've had a rough go of it lately.  For 3 months now, I can count perhaps 3 "good" days.  The rest of those days I would describe as agonizing--full of itching, burning, stinging, flaky, dry, painful, nerve "zingers" and more.  I wish the good days would have been more plentiful during this time but I'm making it through somehow.

I feel like my first 2 months of withdrawal were awful, then I had 2 months of feeling "okay-ish" (not great but tolerable) and now the past 3 months have felt like hell again.  Is it actually worse?  Or am I just tired and feeling it more?  I just can't tell.  I haven't slept well in weeks.

My arms, which looked nearly healed 2 months ago are covered in thick, patchy, dry skin.  Pink and irritated.  The entire surface of my face has been peeling constantly for months without pause.  The crooks of my elbows and knees looked completely healed up for a few weeks and then they broke out in thick, dry, pink rashes and have shown little sign of clearing up.  It all hurts so badly.  And so constantly.

One of the worst problems that I'm having right now is sweating or getting overheated.  Sweating is incredibly painful right now.  Sweating brings on a very intense "stinging" feeling and feels like hundreds of tiny pins are prickling my skin.  And then it brings on a very intense itch attack after that.  The main areas that this is happening is on my neck, chest, in the crooks of my arms & legs.  Even the smallest amount of physical exertion brings it on (like carrying the laundry upstairs).  Or just a couple minutes out in the sun.  Laying my head on a pillow to rest causes heat and has thus been making it difficult to sleep.  I wake up ever few hours with an itch attack from my neck overheating.   Even emotional anxiety can set off the sweating.

While teaching piano lessons, I've noticed myself getting overheated when I'm trying to come up with different ways of explaining concepts to students.  I wouldn't say that I felt emotionally anxious during these times--perhaps just thinking intensely--but I feel a very drastic change in my body temperature.  Then, BAM, I'm suddenly super itchy.... and distracted by my skin while I'm trying to teach.

A few days ago, one of my 9 year old students said "you look red today."  All I could say was "yes, I am red, aren't I?"  This particular student is always asking when my cats are going to come home from "vacation."  (Our cats have been staying with family while I heal--have I mentioned that recently?)  She draws pictures of my cat Sneaker and gives them to me.  She asks if I've gone to visit the cats.  She asks why it's taking so long.

I keep asking that last question, too.

I've felt quiet.

My heart and my spirit have felt so quiet lately.  No words seem adequate for anything.  Sometimes it's an overabundance of joy that leaves me speechless.  Other times it's an overwhelming sadness.  Even contentment and comfort have kept me in a quiet place.

The longer my physical disabilities continue, the more quiet I have become.  I'm improving, overall, but the improvements are incredibly slow and sometimes wane from better to worse.  If I've learned anything through this, it's that physical disabilities can truly weigh heavily on a person's life and spill over onto their emotional and spiritual health.  Perhaps that's an obvious statement, but you truly feel the depths of it when you're dealing with chronic and life-altering issues.

I've also learned that I can't control everything myself, no matter how hard I try (and, oh, I've tried).  I had more words when I truly thought that I could control my own healing process by myself.  I've acquired many books-worth of information through reading and research and I wanted to share all of that information with others when I thought that I was the one in control.  But, truth be told, after many, many months I don't know what's helping or what's not.  I've had to adjust and readjust my course so many countless times.  I've experimented for days, weeks, months at a time and still I have no answers.  I'm tired of guessing and taking stabs (even "educated" stabs) in the dark.  I'm not giving up, but I'm done believing that I'm the one that has hold of the reins. I am certainly not in control of any of this.  My spirit feels quiet and humbled.

I am laid low in the dust; preserve my life according to your word.  

Psalm 119:25

Day 200

A milestone of numbers.  Today is Day 200 of my topical steroid withdrawal.

It's been a long road with continued ups & downs.

I'm keeping everyone in the TSW community in my prayers.  Every one of you is dealing with so many difficulties in life--physically, emotionally, spiritually.  No words could ever truly express all of the tortures that we are enduring inside of our bodies right now, but we can take comfort in knowing that it WILL end in time.  We will all get through this.  Our lives will keep going long after these struggles have gone.

Love.

A tough 3 weeks + herpes outbreak on neck

After my last update, my skin really wasn't so great for a few weeks.

The worst of it happened on mine & Christopher's anniversary weekend.  We went to Manhattan for a couple days and I ended up having a terrible reaction the first evening there.  We had gone out to see a play and I was feeling a bit itchy/sensitive afterwards (though it wasn't anything terrible at that point), so I decided to take a DSS bath when we got back to the house (it was a friend's house which is immaculately clean & beautiful). I believe that I reacted to a.) the chlorine in the water (because I became very itchy in the water), b.) drying off with a towel that smelled heavily of laundry detergent/fabric softner, c.) sleeping in a bed that was likely washed in the same detergent.  It was BAD.  Really bad.  I ended up scratching the whole top surface of my face off and wasn't able to sleep (or hold still) for hours.  The next morning, I woke up and the skin on my face was super tight and broke easily with the smallest scratch.  We ended up coming home early instead of spending another evening there.

From that point, the skin on my entire face continued to peel off every evening for, at least, the next week.  It would feel super tight (hard to smile without ripping the skin on my cheeks) every morning/afternoon.  By the evening, the whole surface would crack apart and peel off.  It's been about 10 days now and it's finally starting to get back to a more consistent state (though it's still peeling quite a bit, it's not nearly as bad as the whole surface peeling off at once).  I would love to avoid that ever happening to me again.  It's so incredibly painful.  And it's also super embarrassing to go out into public.  I didn't take any pictures of it while it was happening--I was just so down about it.

Last Monday, I also had an outbreak of herpes.  It was confined solely to my neck (I didn't get any sores on my lips, which seemed weird to me), so I think I was a little slow to realize what it was at first.  It took a few days for me to pick up on what it was.  Here's a picture of what that looked like:

It was difficult to move my neck in any direction for a few days until it cleared up.  I decided to take an antiviral medication (Valacyclovir) to clear it up quickly--I didn't want to take a chance that it got any worse.  Once the medication ran out, I continued using more natural "antivirals" (L-lysine among other things).  The herpes is no longer active but there's still a little healing that needs to happen for all evidence to fade away from my neck.

Oooph.  This stuff is so relentless.  If it's not one thing, it's always another.

Hoping for a good streak again!  Please!