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!

31 Days + Tuesday's dermatologist appt.

One month has already passed since I stopped my steroid usage.  Thank goodness!  That's one month closer to healthy skin!  It's already felt like a huge emotional roller coaster thus far and I'm praying that I can continue to push through this battle with strength and a positive attitude.

Tuesday's appointment with the new dermatologist went basically as expected--no new insights or answers. She does, however, seem to be more caring/understanding than my most recent dermatologist and is open to me making the decisions about which steps I would like to pursue within my own healing process.  So that's comforting.

Although she gave me a prescription for a stronger steroid and for ProTopic, she said (numerous times) that it is completely my choice if I want to get the prescription filled or not.  She said that she understands if I decide to push through without steroids or immunomodulators.  In addition, she did say that she thinks I'd be a good candidate for Phototherapy, which sounds like something I might like to pursue.  (If any other TSW-ers have tried this, would you mind sharing your thoughts on phototherapy with me???)  The other options that she presented (steroids, immunomodulators)..... no way.  Must not/will not mess with any more drugs and prolong the inevitable.  I must let my body heal itself.  I'm not interested in those "quick fixes" and will stay the course that I've embarked upon.

That's basically the news on that front.

Sunday blues.

Well, it's Sunday and I'm feeling pretty depressed this morning.

My sleep patterns haven't been too great this past week.  I haven't been able to fall asleep until 2 or 3am every night.  I've also been particularly itchy during the evening hours this whole week and it doesn't feel like the Atarax is helping anything right now.

So far as my skin goes, today, my face is looking pretty good again.  My neck & chest are so-so.

My arms, however, are much worse and very densely populated with bumps again.  It makes my arms look like I have red, textured sleeves.  There's very little good skin showing on my arms at this point.  The bumps are just so weird and mysterious to me.  Some of the bumps have a tiny white head on them, like pimples but very very small.  If I press on them gently with the tip of my fingernail they expel a tiny amount of clear liquid.  I can't tell if squeezing them makes things worse or not.  I have a feeling that I shouldn't get carried away with popping them (even though it's always tempting to pop things), so I'm withholding.

My legs are also starting to become rashy.  Over the past few days I've watched them go from almost perfectly clear, to patchy in areas.

I'm starting to get worried that my whole body is going to be covered pretty soon.  I was really hoping that the patches would stay sectionalized.  I was hoping that I could still have really good, healthy skin in areas, but it seems like it's not going to stay that way.

Up until this point, my scratching wasn't tearing my skin apart..... but it's starting to, especially on my arms.  I have a few cuts on my arms due to overzealous scratching.

Gah.  I'm just feeling so down right now. I've spent pretty much the entire weekend in our bedroom, trying to stay still.  I'm already dreading the week ahead of me--it's a busy week and I don't feel capable of getting through it.  Every hour, every minute is a struggle right now.  Perhaps I shouldn't think of the whole week all at once.  I should just focus on today--the next hour or two.  I think that's probably all I can handle at the moment.

I don't mean to sound so depressing, but that's my reality at the moment.  It's a difficult day.  Hoping for a better one tomorrow.