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!