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)!

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.

Autoimmune + Low-Histamine Diet: Days 1-8

As I mentioned in my last post, I am trying to help my body heal faster (and more completely) by following the low-histamine version of the Autoimmune Protocol (AIP) as outlined in Sarah Ballantyne's book The Paleo Approach.   I am hoping that this diet will not only help me to heal from TSW more quickly but that it will also eradicate my original issues with eczema which led me to use steroids in the first place.

In some ways this isn't an easy diet to follow as it requires a lot of cooking. At the beginning of my TSW, I wasn't up for cooking very much (if at all), but after seeing some improvements and having read through The Paleo Approach, I was excited to dig in and start controlling the healing process myself (instead of just waiting around for healing).  Now, I'm not only willing to cook, I'm actually feeling excited and empowered by the nutritious and healing properties of the food that I am eating at every meal.  I've gotten used to the fact that I need to cook all 3 meals every day and it's not feeling overwhelming or stressful at this point.  It just feels like part of my day-to-day schedule now.

Down below is my day-to-day food intake.  As you can see, I've only included the ingredients, not the method of preparation (besides "juice").

In red, I've highlighted the foods that caused a severe & definitive reaction (as you can see, I got off to a rough start the first few days).  These severe reactions (bumps, itchiness, hypersensitivity, etc) appeared within 20-40 minutes of eating and completely ruined my entire day after eating. These are foods that I am avoiding completely at this point.

In yellow, I've highlighted foods that I think caused a minor issue--including small patches of bumps, sudden onset of minor hypersensitivity, itchy mouth, sneezing, etc.  All of these reactions having appeared within 20-40 minutes of having eaten.

Day 1 (April 24, 2014)

8am - 2 eggs (mostly yolks but left a little white)

1pm - 2 rice cakes, butter (comfort food....these foods are not acceptable on the diet)

5pm - yam, coconut oil, apple

7pm - juice: cucumber, apple, carrot, cauliflower leaves

8pm - chicken thighs, cauliflower, garlic, coconut oil
*was not able to go to work because of my reaction to the eggs

Day 2

8am - avocado (I must not have read the histamine list very closely because it's high in histamines!)

10am - apple

1pm - juice: celery, pear, cucumber, carrot ; beef cubes, cauliflower, garlic, c oil

4pm - apple, coconut manna

9:30pm - chicken thigh, butternut squash, onion, garlic, c oil
*went to work and suffered all morning during reaction to avocado.  Did not teach piano lessons this evening because of the reaction.

Day 3 

7am - leftover squash (onion, garlic), yellow carrot, beef cubes, garlic, c oil

11am - apple

12pm - juice: cucumber, carrot, beet, pear ; butterhead lettuce, microgreens, sweet potato, garlic, c oil

7:30pm - haddock, butterhead lettuc, red lettuce, microgreens, bok choy, carrot, beet, shallot, garlic, pork lard, EVOO

Day 4

8am - haddock, shallot, garlic, carrot, parsnip, beet, onion, c oil

12:30pm - apple, unsweetened coconut flakes

4pm - apple

5pm - seaweed snack (olive oil, salt)

5:30pm - beef cubes, garlic, c oil

8pm - chicken, broccoli, cauliflower, garlic, beef lard, c oil ; juice: cucumber, carrot, apple, celery, cauliflower greens

Day 5

7:30am - beef cubes, garlic, c oil, coconut flakes; juice: cucumber, carrot, kale, celery, apple

10am - apple

1:45pm - beef petite tender, broccoli, garlic, c oil, butter head lettuce, red lettuce, shallot, EVOO

3pm - juice: cucumber, celery, carrot, kale, apple ; coconut flakes

6:30pm - coconut flakes

9pm - yam, onion, garlic, c oil, EVOO

Day 6

9:30am - coconut flakes (slightly burnt but ate anyway), pear

12:40pm - chicken thighs, broccoli, garlic, c oil

9pm - leeks, carrot, parsnip, EVOO, garlic

Day 7

8am - juice: cucumber, celery, kale, carrot, apple ; chicken thighs, broccoli, EVOO

1pm - yams, EVOO

8pm - roasted bone marrow, beef ranch steak, onions, garlic, pepper, beef lard, c oil, microgreens ; juice: cucumber, carrot, kale, celery, apple

Day 8 (May 1, 2014)

8am - carrots

10am - coconut flakes, apple, carrot juice

1pm - coconut flakes, apple, carrot juice (remainder from earlier)

2:30pm chicken legs

9pm - zuccini, golden beets, onions, pepper, duck fat, beef stock (freshly made, with carrot, onion, celery, pepper)


***all meals on this list were prepared with either Himalyan Pink Salt and/or Celtic Sea Salt

So far as my skin goes, the first few days were absolutely awful--I had bumps all down my face/neck/chest.  I had a lot of healing to do after those first few days.  But, by the end of the week, a lot of the bumps had gone down in size and many disappeared.  The skin on my face wasn't peeling off everyday (like it had been) and the red/pink coloration in my face also started subsiding a bit.  I actually went to sleep & woke up fairly itch-free a few times however evenings have been/are still my most difficult times of day in terms of itchiness/hypersensitivity.  Wanted to see larger improvements already but I realize that this was only week 1--so I'll take what I can get.  The improvements that I saw were/are enough to keep me going with hopefulness!

Beyond TSW : Autoimmune Protocol + Histamine Intolerance

Since starting TSW in January, I have had a sense that I need to do more for my body than simply "stop steroids."  Not only does it make sense that the human body will heal faster, and more completely, if given the correct fuel (food!) but, considering my own story, I've still been trying to pull the puzzle pieces together to find an exact cause/remedy for my original skin issues.

As I've mentioned in previous posts, I've always had minor skin issues, but things really spiraled out of control about 2.5 years ago (at a time when I had not used steroids in years!).  I was not a "regular" steroid user until these unexplained (and terrible) rashes starting appearing in my adulthood.  For this reason, I am not satisfied that I will heal completely from stopping steroids alone.  For me, it's just Step 1 in a process.  As I've been undergoing TSW, I have been in a constant search for more information about how to heal my skin issues and also heal all of the other damage that the steroids did to my body (besides the skin).  I believe that I am finally starting my journey down the correct path to healing my body completely!

To preface, I had previously started experimenting with the GAPS diet, but found myself having horrible reactions to leftover broth/soup, so I abandoned ship.  I know now that my reactions were histame-related (more information on this below).  Although the GAPS diet did not work for me, specifically, I still believe that it could be an excellent approach for healing for others.


Instead, I am embarking into:

The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, by Sarah Ballantyne, PhD (her website: The Paleo Mom)

For those who know me, they know that I've eaten a mostly Paleo diet for over 3.5 years now (by mostly I mean 90-95%).  My diet has been fairly clean for a long time now, so parts of this approach are nothing new to me. However there is A LOT of information that I a.) did not know, b.) now understand the importance of incorporating for my own specific healing process!  On the whole, her approach is a bit more strict than "normal" Paleo, but for good reason!

Here's the rundown:

Besides the normal NO grains, NO legumes, NO dairy, the diet also excludes:

• eggs
• nuts
• nightshades
• coffee (of all the foods I am avoiding this is actually the saddest part for me)

Now that I'm not medicating myself (with steroids and only using antihistamines when absolutely necessary), I am also learning that I have a very severe histamine intolerance.  (Interestingly, The Paleo Approach also has a section about histamine intolerance outlined in the book!)  The great thing about not medicating yourself with drugs is that you can actually listen to your body and what it's telling you about the foods you eat.  

Therefore, I am also excluding the following foods (which are allowed on the normal Autoimmune Protocol, but should be avoided if you have histamine intolerance):

Veggies:

Spinach

Avocado

Fruit:

bananas

grapes

oranges

pineapples

strawberries

tangerines

Fermented anything (meats, sauerkraut, etc)

Leftover meat (histamine levels rise A LOT once a meat is cooked/leftover)

Pork

Certain Fish (there's a whole list of types of fish to avoid due to histamine content)

Green Tea

All alcohol

Christopher made this list for me as a guide (it's hanging on our fridge).....

One thing I need to change about this list (besides the Green Tea that I crossed out), is Chicken.  Chicken is allowed, but shouldn't be as much of a staple as red meat which has a better balance of Omega-3's, etc.

Instead of feeling overwhelmed by the list of "Foods to Avoid",  I am feeling empowered by the "Foods to Eat" list!  It's limiting, sure, but there are a lot of delicious foods that I am allowed to eat so I'm focusing on those!

So far, I'm almost a week into this diet.  I had a few mess-ups during the first 2 days (both histamine-related) so I got off to a pretty rocky start.  Hopefully I've gotten the mistakes out of my system so I can proceed with the healing.  Within the next few days, I'm going to try to post my day-to-day diet on here to start creating a log of my food intake.

To wrap things up, it feels really good to take your health into your own hands.  Everyone undergoing TSW probably understands this at least in part (we're all going against the advice of our doctors to try to heal ourselves, aren't we?!).  For me, gaining my health back does not simply boil down to "stop steroids," I believe it's going to take more than that (especially if I want to avoid having to visit ANY doctors' offices for a long, long while).  I never understood the desire for "true health" fully before--even when I was eating Paleo prior to my skin condition!  Health has so much more meaning for me now than simply "being skinny."  And now, it's even taking on more meaning than "clear skin."  I want to take care of my body and not abuse it in anyway; I want to help my body function at it's highest levels.  For me, it's taken a debilitating circumstance to knock me upside the head so I can learn about real health.

More soon!

sad face weekend.

Big Flare #3 happened this weekend. I had a bunch of plans for the weekend but ended up staying at home almost the entire time.  It hit me hard on Saturday morning when I woke up.  My face/neck/chest was broken out in those curious little dots again, the texture was quite rough, the color very inflamed and it stung like crazy to even move my neck in the slightest motion.  Thankfully, the rest of my body wasn't effected.  Saturday felt the worst, Sunday was a tiny bit better and today I'm a little better yet, but not quite out of the woods yet.  Last time, if took about 4 days until the flare disappeared entirely and it left me with even nicer skin than I had prior to the flare.  Fingers crossed that my skin is even more beautiful yet in a few days!  Overall, I can't complain, as each flare feels less intense.  Even though I hate the flares because they mess up my plans, it's a great reminder that ultimate healing IS COMING!  My body is doing it's job really well and is trying to get me back into a state of healthiness!

It seems that my large flares coincide with my menstrual cycle.  My 2 previous flares happened a day or two before my cycle started; this time it happened a day after it started.  I guess it's good to see a pattern starting to happen.  We'll see if that trend continues.

One other issue that made my weekend even a little more sad.... my closet shelf fell in the middle of the night (and right after I had ironed 4 of my dresses).  What can ya do.

95 Days: no huge complaints. just little ones.

95 days already?

Overall, my skin has shown a general improvement since the beginning of my TSW.  The texture of the majority of my skin is generally soft and smooth (it was formerly very roughly textured).  Somedays my skin sheds & flakes a lot, other days not so much.  I still have a general (and unnatural) "pinkness" to my coloration--some days it's worse, somedays it's not so bad.  Although I feel like things are continuing to look up, I'm not seeing any dramatic improvements like I saw last month; I seem to have hit a plateau.  Most days my skin looks/feels pretty much the same.  I guess that's a good thing?  But I'm still craving the dramatic improvements.

Despite all of this, the itchiness has been uncontrollable lately.  I'm constantly crawling in my skin even though it looks/feels generally better.  It's so awful.  At least my itching no longer rips my skin apart, as the skin is quite strong. I'm taking a 10mg hydroxyzine pill every couple days to cut down on the itchiness.  But the itchiness is actually waking me up in the middle of the night now.  Although I was very itchy before, the itch actually seems much worse now?  I don't understand.

I did have 2 more bouts with herpes recently.  Two weeks ago, I had a few sores appear on my chin, which went away within 5-6 days with the help of an antiviral.  Then this week, I had some appear right around my left eye lid.  That seems to be under control again, thankfully.

Ehhh.  The itchiness makes me want to stop writing.  I'll try to update again soon.

The difference of a few days.

Just wanted to post a quick update with a photo to show how quickly the skin changes when you're undergoing TSW.

Compare this photo to my photos from just a few days ago when I was flaring...

Not nearly as bad!  Woohoo (for now at least!)!

Rough, itchy week.

I haven't updated in a while primarily because things have, for the most part, been going pretty well.  For the past month, I've been able to live my life mostly normally with moderate comfort.  I haven't had to call off of work or cancel any plans and I haven't felt unwell enough to let my skin stop me from doing the things that I've wanted to do.

In comparison to how well I've been doing recently, I did, however, have a bit of a rough week this past week.  The itching, which had been fairly moderate recently, came back with a vengeance this past Monday and is still going.  Despite the itching, my skin looked pretty good for most of the week but really took a turn for the worse on Friday and Saturday (yesterday).  My neck/chest area has broken out in the same little bumps that I've experienced in varying degrees all along.  This time, however, the pus wasn't the same clear liquid that I had before.... it's more of a solid (like acne).  Gross.  WHY?!

Yesterday was possibly the worst day to look & feel so awful--I had a gig playing piano for a Purim celebration down the street.  I was front-and-center before the eyes of hundreds of strangers.  Ooooph.  I covered my neck with a big scarf to make my rash less visible and that helped me feel more comfortable, emotionally. 

Here's a few pictures from yesterday before I left for the gig:

Still trying to dress well despite the skin.

When I got home, I immediately started a Dead Sea Salt bath and hopped in the tub.  It felt so soothing after a long day.

So far today, I'm hanging in there.  I'm fasting this morning-afternoon to see if it helps my skin at all.  I also drank some edible clay to help detox a little bit.  Hoping these things will help relieve my current symptoms somewhat.  It's good for the body, anyway, so it's a healthy thing to do regardless.

This really makes me wonder about flares.  Is it just a natural cycle that happens regardless of anything?  Is it food related?  Is it related to the menstrual cycle at all?  These are questions that everyone undergoing TSW deals with.  Why are there no real answers yet?!

At any rate, I'm still very happy to be off of steroids.  At least now I can try to listen to my body's natural signals and figure out what it needs on my own.  Just hoping that this current thing settles back down a little bit. 

No more restaurants for a while.

Today I went out to lunch with some friends; it was so nice!

Sadly, however, I'm noticing a trend: every time I eat food at a restaurant my skin becomes very hypersensitive within an hour of eating and the little bumps on my face/neck/chest become inflamed and BURN!

Perhaps it could be the oil that they cook the food in?  I just can't say that I understand it at all, but it's happened too many times for it to be coincidence.  I'm just now realizing.

Sometimes the burning only seems to effect me for a few hours after eating, but sometimes it lasts for a few days.  I hope this isn't a long one.  I was just starting to recoup from eating out last Tuesday. :(

No more restaurants for a while.  Just good ol' home cooking for me.

Ouchers.

Feeling feminine by dressing with style amidst TSW

Throughout this whole TSW experience, I've been trying to stay as positive as possible (sometimes with more or less success).

One way that I've been trying to accomplish this is by dressing well.  It might sound silly to some folks, but I'm sure that everyone undergoing TSW feels self-conscious and even a little embarrassed at times because we don't look "normal."  My skin makes me feel anything but feminine, so I've been trying to compensate by wearing clothes that make me feel a little prettier but also feel comfortable for my skin.

Tying my hair up in a cotton scarf has not only helped me to feel more comfortable--no hair touching my face or neck--but it also makes me feel pretty depending on how I tie it.

I've mostly been tying it like this when I go out:

I usually tie it like this in the evening because it feels a little more sturdy on my head (also looks a little more house-wifey):

All of the clothes that I've been wearing are cotton. I've mostly been wearing dresses with leggings.  It's very comfortable but it also feels very girly.  Since most of my dresses are short-sleeved, I have a ton of cotton cardigans to cover the sensitive skin on my arms.  They also keep me warm during this cold weather!

In addition to the scarf wrapped around my head, I've also been wearing a scarf around my neck.  Double scarf!

A little Bohemian, perhaps?

On days that my neck feels less sensitive, I might try to go without the neck scarf.

(I guess my dress makes me look pregnant?  I'm not pregnant.)

Like I said, this might seem silly to some folks, but TSW is so difficult because we're not just dealing with the pain and discomfort of our ailment (which is awful enough!).  We're also dealing with our physical appearance being altered.  We neither feel or look like ourselves; both of which take a huge toll on our ability to cope.  I'm finding that it helps me mentally when I pay attention to dressing well, even when I'm feeling my worst.

Day 60 - Doing pretty well!

It's been over a week since my last update and things have been going really well, overall!

Although my skin is nowhere near perfect quite yet, it has improved to the extent in which I feel like I've gotten a large portion of my life back already!  I've actually left the house on multiple occasions "just for fun"; I made a trip to a thrift store last week, walked to a local coffee house and sat in the park for an hour this past weekend.  I even took a bus out to Harrisburg for a concert on Saturday night and met up with a good friend for dinner! All of this is PRETTY HUGE for me considering that, up until last week, I had only left the house for the necessaries (work & groceries, primarily).

I've still been very slow when getting ready in the morning; it's my most difficult part of the day.  Washing my hair and getting dressed still feels overwhelming and difficult but I often end up feeling a bit better afterwards.

I've stopped doing the Dead Sea Salt baths as described in the last post and have instead started taking "plain" DSS baths (without the oatmeal/oil).  Following the bath, dusting off with the corn starch brings a little extra comfort and seems to soothe the itch to some extent. (I should add that I'm using Organic Non-GMO corn starch.  I think that's important.)

I've also been going to acupuncture twice a week for the past 2 weeks and it's helping me A LOT already (and much more than I expected it to!).  Not only does it feel like it's starting to help my skin (little by little), but it's also helping me in other ways; I feel more energetic, more centered (emotionally & physically), less nervous & less self-centered.  I'm starting to get glimpses & feelings of my normal self again.  Some days feel great.  Other days are just okay.

In addition, some small things that I've also been doing: drinking a lot of water, eating a few teaspoons of Manuka honey everyday, taking Fermented Cod Liver Oil, probiotics, continuing to eat gluten-free & no processed foods, trying to get a lot of coconut oil, flax oil & ghee into my diet, drinking more herbal tea (I'm trying to drink less coffee, but I haven't been very successful).  Once a week, I've also been doing a short contrast shower to improve circulation (these are actually super refreshing and energizing!).


Here's a photo from 2 days ago:

Compare that to the beginning of January:

Despite the improvements in my physical comfort, sometimes I'm still feeling a little discouraged when I look at myself in the mirror so I've been trying not to look at it so much.  Don't get me wrong, I'm starting to look a lot better--I've noticed that I look almost normal in certain (dim) lighting--but I'm still longing for perfect, feminine skin!  This past Sunday afternoon, when I went to our little coffee shop down the street, I found myself feeling really self-conscious.  The place itself is very small and it was packed with people that afternoon; I was in very close proximity with a lot of people.  The sunlight was pouring in the windows with such strength (it was lovely) and, when I looked around, I noticed how beautiful everyone else's skin looked in the sunlight.  Normally, I would love the strong sunlight, but I was feeling exposed and embarrassed (not that anyone else was actually paying any attention to me!).  Since I was feeling this way, I took my coffee outside and went out to sit in the park across the street.  I felt fine once I was away from everyone and it was refreshing to be outside (it felt like spring this past weekend).

Tuesday was a particularly good day all around.  Christopher & I went out for dinner & a movie since we both just happened to have the evening off.  It was really nice to go out and do something normal for a change--and I felt good doing it!  I'm not sure if it was something that I ate that night or what (I drank half a glass of cider despite my fears that it might effect me negatively), because I've been struggling a little bit the past 2 days since then.  Nothing too major, just a little setback in my comfort levels (particularly the itchiness & hypersensitivity).  Two steps forward, one step back, I suppose.

That's all the news that I have right now.  My heart and prayers are with everyone who is going through TSW right now.  Much love.

New bath routine = finding MUCH comfort!

Last week, my 3rd cousin Jan contacted me when she heard about my skin issues.  Jan, herself, battled some terrible skin problems for many years and had some advice for me!  She told me told me to STOP SHOWERING & STOP MOISTURIZING!  And to do the following baths once a day:


DEAD SEA SALT BATH

1 lb. Dead Sea Salts
1 cup Oatmeal (instead of putting this directly into the water, I make a satchel so the tub isn't too difficult to clean)
1/4 cup Sesame Oil
Corn starch (to dust the entire body with after stepping out of the bath)

Here's what she said about the baths:

Adjust the temperature of the water so it is on the warm side of tepid. The Dead Sea salts rapidly promote healing. The oatmeal quiets the itch, and the sesame oil provides moisture. When you get out of the tub, gently pat your skin dry, and then dust your entire body in corn starch. The corn starch actually acts as a moisturizer by holding the moisture in your skin, but it also allows your skin to breath naturally. Throughout the day, if you get itchy, dust the area in more cornstarch, you will be surprised at how pleasant this feels. When you use liquid moisturizers you are creating a moist environment where bacteria and fungus can thrive. It is much better if you stop depleting your skin of its natural oils by stopping the hot showers. Stop using anything topical except for soaking in this salt, oatmeal, sesame oil solution and following with corn starch. I really do think that this will begin to provide you with some relief. If you are still experiencing inflammation itching after a couple of weeks, I will talk to my acupuncturist who helped me. 

It will also help if you incorporate olive oil, wheat germ oil, or fish oil into your diet. It will also help if you take a good pro biotic.

After just one week of following this bath outline......  I HAVE EXPERIENCED MUCH COMFORT!  And it feels like my skin is actually healing much faster now!   Last week, when I was looking down at my skin, I resigned to the thinking "It's going to take at least a year for me to heal from this.  Probably longer.  The damage is just too extensive to heal any faster than that."  But now.... after taking the baths (and not moisturizing*) for just one week, I'm predicting that it might take about 5 or 6 months to experience total healing!  I could be wrong, of course!  But healing already feels so much closer than it did just last week!

Today, I also have an appointment with an acupuncturist who was recommended directly from Jan's own acupuncturist in Pittsburgh.  (Can you believe that she actually asked her acupuncturist to look at my blog and see if he thought the acupuncture would help!?!)  I'm excited to go this afternoon--hoping that it will provide extra healing and comfort!

Thank you so much, Jan!  Words can't even begin to describe how thankful I am that you contacted me.

If anyone else in the midst of TSW tries these baths, please report back and let us know if it helps you too!!



*I have been using a touch of jojoba oil around my eyes (once a day) for comfort from extreme flakey-ness in that area.  It works beautifully!

Photo update - 40 days without steroids

Still red, still itchy.  (And still no voice from the laryngitis.)  Despite the visuals of my skin, I feel more comfortable than usual today.  No burning or stinging, just itchy and a little stiff.

Just for fun, this is a different way that I'm tying my hair back with a scarf.  Trying to be stylish.

Trying to stay positive!

TSW + laryngitis + a kidney stone?!

The title pretty much says it all.

I'm really being put through the ringer over here.  But, then again, all of us are in some way, shape, or form, right?

The laryngitis started just a few days ago (on my birthday, actually).  I woke up on Wednesday morning without a voice.  My voice is about 1/3 back to normal today.  Raspy and hurty, but I can squeak a few words out now & then.

The kidney stone came on last night right before bedtime.  The pain lasted about 4 hours.  It was really intense but it wasn't quite as bad as a few months ago when I had another stone and had to be hospitalized.  I was able to get through this one by myself at home.

The funny thing was that during this kidney stone "attack" my skin was so incredibly pale and wasn't itchy at all.  When I looked in the mirror (in a stupor), I looked like a normal person (albeit very weak & sickly looking)!  Even during the immense pain, I was elated to see pale skin!  It didn't last, of course.  As soon as the stone passed, my redness & itchiness came right back within minutes.  Grrrrr.

It's hard to say which I'd prefer--the kidney stone pain or the terrible skin discomfort....

I think I'd choose the laryngitis.  It's annoying but not so bad.  :)

Morning trials and tribulations.

Since starting TSW,  my mornings have been absolutely awful.  I've never been much of a morning person to begin with, so I can't say that it's really ruined my relationship with the morning hours.  No, it's just made something that was already bad into something much, much worse.

To start, the Atarax (hydroxyzine) medication, which I take for this insane itching, doesn't make me feel drowsy at bedtime (when I take it and when I actually *wish* that its drowsy effects would kick in).  Instead, I end up being awake for hours past midnight.  Not only am I sleep-deprived the next morning, because I stayed up so late, but it feels like the drowsy-effects of the medication are heavily upon me only then.  Trial #1.

Waking up also means being aware of pain.  It's a difficult thing to wake up to, pain is.  I wish that I could sleep all day and forget about the intense discomfort all together.  When I wake up, I feel semi-okay if I lie perfectly still but, as soon as I move my body even the slightest amount, the itch & the stinging starts up with a vengeance.  Since I'm aware of this, I tend to take advantage of it, and stay absolutely still for as long as I can...but that often means that I'm staying in bed for an extra 30-40 minutes every morning. Trial #2.

Trial #3 is debating whether I should first (a.) make a cup of coffee (to help myself wake up from the intense drowsiness) or, (b.) take a shower and moisturize my super flaky, stiff skin as soon as possible.  It's always a really tough call, which adds a few extra minutes to my stay-still-as-long-as-possible trial.  Thankfully, when Christopher's home during these times, he'll always bring me a cup of coffee before I even have to ask. (Thank God for this husband of mine).

Trial #4 takes place after I shower.  Not only does it feel like showering takes 100X more effort than it would under normal circumstances, but since I moisturize my body with super-greasy stuff (post-shower), I have to allow a little bit of extra time before putting clothes on.  Otherwise my clothes end up getting very greasy and look dirty!  YUCK.  The longer I wait to get dressed, however, the less drive that I have to actually keep getting ready.  The bed looks particularly tempting during this 20-30 minute timeframe.  It's soooooo difficult convincing myself NOT to get back under the covers and just forget about the rest of the day and all of my responsibilities.

Once I finally get myself dressed after all of this, I look back at the bed one more time... And then I grab my coat, check my grease-level in the mirror and head out the door for work.  I'm usually a little late nowadays.  Thankfully the folks at work have been patient with me, even though they have no idea of the intense battles that I've already undergone before I sit down at my office desk.

I could probably keep ranting for a few more paragraphs--I haven't included every aspect of my morning trials and tribulations quite yet.  But I'm starting to feel like this post is too complain-y.  So I'm just going to stop now and feel good about having a small opportunity to vent about this aspect of TSW!

Flare (mini-flare)? + pictures

Last week was pretty difficult all around.  It felt like it might have been a week-long flare.  Since I'm new at this withdrawal thing, I'm only starting to get a sense of what a flare is like for me.  It could have been a mini-flare.  I hope not!  I hope that's the worst it gets!

I spent most of the week in bed, as it was difficult and very irritating to move my body even in the smallest or slightest motion.  I worked and taught piano lessons when I was feeling strong, but took time off when necessary (and tried not to feel bad about it).

Emotionally, it was probably the worst that I've felt since starting withdrawals.  I was depressed pretty much all week.  It's not that I wasn't feeling hopeful about the future--because I am hopeful and I know that I'm on the road to healing.  It wasn't that I felt sorry for myself, either--everyone in the world has issues and I don't have any feelings of "Why me?".  As it was, I barely felt like speaking or thinking, even.  I just wanted to be a vegetable--alive, but not required to do much of anything, other than exist.   

There were, however, a few good moments.  On Friday evening (when the following photos were taken), my wonderful friend Kelly came over with her husband and 2 girls for a visit.  For some odd reason, I felt like I was able to cook--so Christopher & I made the dinner together--and everyone enjoyed a nice meal together.  It was a nice distraction amidst a difficult week.  

Then my parents drove in from Pittsburgh and stayed with us all weekend.  They helped with some things around the house (we just moved to a new home last month and still have lots of settling to do).  Their help was so appreciated and it was nice to have them here for a few days.  I felt bad because I wasn't in the best of spirits during their visit, but they're my parents and thankfully they love me anyhow. ;)  Thanks, family!

FRIDAY, 1/31 (4 days ago)

Morning, post-shower.

In daylight.  The camera made my skin look smoother than it actually was, but you can still see the pinkness covering my face/neck/chest.  You can see a few spots of normal skin coloration (particularly on my nose, ear and along my hairline).

Later that same evening.

SUNDAY, 2/2 (last night):

Much smoother and temporarily stronger. Hope it lasts for a few days?!

My left hand and arms, however, look a little bit worse.

This was last week:

This was last night:

On a sidenote, I've discovered that I enjoy tying my hair up in a scarf.  Not only does it make me feel more comfortable--no hair coming down and touching my neck or face!--but it also covers up my hair (that is absolutely desperate for a cut) in a cute way!