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)!

Something is working right now.

It's been a while since my last post but that doesn't mean that I've been inactive in my search for more answers and more skin comfort!

In my previous post, I talked about the Autoimmune + Low-Histamine diet that I started near the end of April.  Even though I was keeping record of every morsel of food that I put into my mouth, I failed to update this blog with this information beyond my first week (laziness... I just didn't feel like typing it all out).  Well, I'm still on that same diet but, as of 2 weeks ago, I also eliminated the food group of FODMAPs (garlic, onions, etc.) from my diet.

I had been trudging through the Autoimmune + Low-Histamine diet religiously for over a month.  After an initial period of improvements, I plateaued.  The bumps on my chest/neck looked & felt about the same and, honestly, some days were still quite awful.  A few weeks ago, I was reading Chris Kresser's book Your Personal Paleo Code in which he recommends that people experiencing skin conditions either do a Low-Histamine diet OR cut out FODMAPs (in addition to an Autoimmune diet).  Since I was already doing the Autoimmune + Low-Histamine diet, I figured.... why not cut out FODMAPs at the same time?  (Seriously, you get to a point where you don't even care if you can't eat most foods.)  So, I've been doing that for about 2 weeks now.

I saw a small amount of progress the first week, but was still really suffering when I got overheated/sweaty.  This past Sunday morning, I went outside to pull some weeds from the front yard and started overheating after just 2 minutes of weeding.  It put me into a FULL-MODE ITCH ATTACK.  Immediately, I went inside and put a thick mixture of Zinc Oxide & Witch Hazel onto my skin.  The itching subsided after a few minutes and I ended up leaving the mixture on my skin for the whole day (didn't really leave the house that day).  By the end of the evening, I noticed that the bumps from my skin had started disappearing.  So I've been putting the mixture on my skin for the past 4 evenings before bedtime.

My skin is looking more and more radiant/porcelain-like every day.  In fact, I barely recognize myself with skin that looks this good!  And it's feeling much more comfortable (though not perfect quite yet).

So, is it FODMAPs?  The Zinc Oxide/Witch Hazel mixture?  Or is it that I've been drinking massive amounts of fresh bone broth every day for the past 5 days?  Or is it that I've also started taking Zinc & Selenium supplements over the past week?  Is it because I've started taking a new probiotic that Chris Kresser recommends for people with skin conditions?  I'm wondering if it's one particular thing or if I've finally hit on the magic combination for my skin?

Of course, I'm typing all of this out and still wondering if I'll actually keep improving beyond this point.  Am I getting ahead of myself right now?

Lots of love to everyone.