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!

Another small flare despite my best efforts.

Just wanted to update that I've had a flare up since my last post.  In fact, it started the same day that I wrote about how well I was doing!

It's already starting to subside quite a bit, but the skin on my face/neck/chest--which had recently been looking nearly-normal--broke out in pink spots & patches.  It was nowhere close to how bad it had been during previous flares, but still frustrating, nonetheless.  The itchiness & hypersensitivity felt unbearable even though it really wasn't any worse than anything I've already experienced. I think it just hit me a little harder on the emotional side of things, because I was really starting to think that I was coming up on the end of the tunnel and I thought that I wouldn't experience any more unbearable flares anymore.  Live and learn, I suppose.

I was racking my brain trying to figure out what might have caused the flare to happen.... but, truly, nothing about my diet or lifestyle changed.  I didn't make any slips from my diet, my stress levels were pretty low.... I can't think of anything that was different.  Perhaps it was a hormonal shift or something that I'm not able to realize.  Or, perhaps there is some truth to what people say about flares happening for no rhyme or reason?

Here's two pictures:

Despite the flare, I still believe that everything that I've been doing (diet and otherwise) is helping my body to heal faster & more completely, so I will stay the course.

Photo update: 176 days

I'm thankful to report that, since my last post, my skin is still hanging in there and continuing to improve.

Here's what my chest looked like in January....

Here's what it looks like now....

Here's what my hand looked like in January....

Here's what it looks like now....

You can see that I'm not completely out of the woods yet.  There's still skin discoloration on various parts of my body and I'm still quite itchy overall.  I continue to have minor issues from day to day, but nothing close to how it had previously been.

If I had to narrow it down, I would credit a few things for my fast-ish recovery time:

1. Dead Sea Salt baths/not showering/not moisturizing
2. Eating a very clean Autoimmune/Low-histamine/No FODMAPs diet
3. Drinking homemade meat/bone broth constantly (like it's water)
4. Getting lots of rest (though still trying to get out and do the things that I enjoy!)
5. Zinc Oxide/witch hazel mixture (stops itching when I get overheated/super itchy)
6. Prescript-Assist Probiotic

I can hardly believe that I'm already at 176 days.  The beginning stages of TSW felt like it lasted forever (like I'd never improve) but, anymore, the days seem to be flying by.  I feel so thankful for the recovery.... but I also feel thankful for the whole process (as difficult as it is).  What a learning experience this has been (and continues to be)!