Sunday, March 2, 2014

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.


Friday, February 28, 2014

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.

Thursday, February 27, 2014

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.

Monday, February 17, 2014

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:


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!

Saturday, February 8, 2014

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!

Friday, February 7, 2014

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.  :)

Thursday, February 6, 2014

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!