Monthly Archives: March 2013

The Second Flare Is Harder Than the First

“When will I know if I’m in the second flare?”

This is the question I asked myself a few days ago.  One post from Louise’s blog has been pretty helpful in breaking down the overall typical pattern of TSW and I have referred to it often, while still understanding that everyone is different and that my own personal healing (or yours) may not follow that trajectory.  I’m at 66 days in – 2 months down and entering the third month – so I knew that another flare was probably going to come at any point.

“Am I in the second flare?” I asked myself, while my nearly healthy looking elbow creases from the weekend began to redden and itch and the back of my hands developed a bunch of tiny scabs.

“Could I be in the second flare now?” I mentally wondered, while scratching wildly at my legs and thighs, sending a torrent of tiny flakes to the floor swirling like snow.

“Maybe this is the second flare”, I stated, as my previously-improving neck began again to get very very dry and tight and uncomfortable.

“Yeah, this is probably the second flare”, I agreed yesterday, while ripping off layers of clothing in the car while driving in order to scratch everywhere.

So it dawned on me.  This IS the second flare.  It was kind of insidious, like my improvement over the weekend slowly slipped away and reverted.  This is why I wasn’t sure if I entered another flare state because it didn’t come on suddenly.  The second flare is not harder PHYSICALLY because I am used to dealing with it – –  and there IS a bit of improvement this time around, like I have barely any oozing and I don’t have such a burning sensation – – but it’s harder psychologically, emotionally, and mentally.  To see your skin make vast improvements in a few days and then go right back to its red self is so disheartening.  I’m sick of scarves and sweaters and concealer.  I’m sick of flakes getting everywhere.  I’m sick of not smiling and laughing because my face is too uncomfortable.  You feel like you’ll never heal and will be trapped in this red, dry body forever.  Lying in bed last night seeing my red self in the mirror, I couldn’t stop the tears from sliding down my red, Vaseline-coated cheeks.  I pleaded with God to find me a way out from this.

I mention faith and God more often in this blog now because sometimes it’s all I have to lean on.  I don’t bring it up to alienate any readers of this blog that have different beliefs as that’s not my intent at all, but for me my faith has been the one saving thing in many, many instances where I felt I couldn’t deal with this anymore.  There is a passage in the Bible from 2 Corinthians where a man named Paul is given some sort of affliction, a “thorn”, a “messenger of Satan” sent to torment him.  We don’t know what that affliction was.  It could have been any physical or mental illness.  It wasn’t TSW since there were no steroids in Bible times, but certainly could have been some kind of skin affliction.  It could have been constipation for all we know!  Paul says that he pleaded with God three times to take this away from him.  (I’ve pleaded with God probably about 2,793 times to get me out of TSW, lol).  God told Paul, “My grace is sufficient for you, for my power is made perfect in weakness.”  Paul realized he was glad for this weakness because it reinforced that he needed God and he actually “delighted in difficulty”.  (Go you, Paul, I’m respecting anyone that delights in the spawn of Satan that is TSW – I can stay optimistic for the most part but there’s no way in hell I could delight in this).  The section ends with Paul announcing “When I am weak, then I am strong”.

Going through TSW has certainly brought me the lesson of humility, and maybe that’s the exact lesson that God wanted to teach me.  Even before TSW, eczema itself kept me humble, which was a good thing.  When I used to have clear and predictable skin years ago, I do shamefully remember instances where I would see people and think I was better than them.  There’s no way that I should be doing that as I’m no better (or worse) than anyone else.  This also reinforces that I’m a weak person, I’m human, I have foibles, and I need God.  I need God more than ever now!!  I have to just keep going – I have no other choice.  I know I’m going to emerge from TSW with a reliance and trust in God greater than I had when I was healthy-skinned and naive.  I just have to keep taking it one day at a time with the faith that God will bring me through.

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Things to Say if You Are The Spouse/Partner of Someone with TSW

First a quick update.  64 days and counting.  My rashes came back a little bit from this weekend when I was doing much better, and the oozing is back again, but not so bad.  One symptom that I’m really glad to be rid of (and I hope it’s gone for good!) is when the skin around my eyes gets so dry and tight that it’s uncomfortable to blink or open my eyes wide.  So far I’ve had a good 5-7 days or more without that happening!  I wonder when the second flare will come or if it will come at all, maybe I”ll just stagnate and gradually get better.

I’ve noticed recently some hair loss/thinning.  Some TSWers note that their hair thins out or they lose their eyebrows.  Thankfully my eyebrows haven’t gone anywhere, but I do notice that any body hair is growing back slower (like when I shave my legs) and that the hair on my head is really getting fine and limp.  I had relatively fine, straight hair to begin with, so now it just looks stringy and disgusting to me.  Plus it’s a terribly grown-out version of one of those punky haircuts that’s longer in the front and spiky in the back, now it’s just sort of a shapeless short bob.I’ve been saying I’ll go back to short hair when I am seeing vast improvements in TSW because then I won’t feel I have to hide, but having really short hair is so much easier and there isn’t that much more that I can hide with my shapeless mop at the moment, as it doesn’t cover my neck and only goes down to my chin at the longest part. So maybe I’ll go back to having something like the below pictures, a la Halle Berry or Victoria Beckham.  The only problem with having hair that short, as a female with average, non-movie star looks like me, is that you really have to wear a bit of makeup and somewhat feminine clothing to help people understand you’re not a little boy (at least for me).   Basically I just don’t want to look like the same tired  sickly version of myself with a bad haircut… LOL.  But, you get to the point where you don’t care what people think anymore, and I’m at that point.  Comfort and convenience is going to trump vanity here.  I WILL be getting a short haircut, it’s just a matter of when I can find the time.

Short-spiky-pixie-haircut

HalleBerry-spiky-hair

Victoria Beckham

 

 

 

 

 

And now – If you are the spouse/partner/boyfriend/girlfriend of someone going through Topical Steroid Withdrawal, I’ve amassed a list of helpful, caring, loving things you can say to make that person’s burden a little easier!

“I don’t mind you itching all the time, but why don’t we hold hands or hug so then your hands will be distracted?!?”

“Don’t worry about all those flakes in the bed, we can vacuum those.  I don’t think they’re disgusting at all!”

“Let me help you put together your most comfortable outfits, so that you can feel good and not itchy.”

“I don’t think you need any more stress in your life, so I’m going to help with most of the housework.”

“You know, red is the new black this year.  I hear it’s highly fashionable.  You just happen to be fashionable head to toe!”

“You really need to keep your strength up with healing from this TSW.  Why don’t I buy you dinner from [insert favorite place here].”

“No, of course I don’t mind that you just want to stay in the house all day like a hermit!  Let me keep you company and we can watch a movie together.”

“Let’s go for a walk/run/bikeride together.  Being in the fresh air and exercising will help you forget about your skin for a bit and de-stress!”

“Your skin is looking better today!  I promise you that probably no one is noticing it!”

“I admire you for persevering through this – you are a warrior!”

“I never mind you complaining about your skin.  It must be terrible and even though I can’t understand it first-hand, I’m always here if you want to vent.”

“I know YOU may not feel beautiful, but I know you are.  It will just be a matter of time before you’re just as beautiful on the outside again as you are on the inside!”

“Of course I still find you attractive!  TSW doesn’t mean you’re not sexy anymore.  And if you prefer, we can make love with the lights off.”

Did I miss anything on this list?  What else would you like to hear from those that are supporting you in your TSW journey?

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2 Month Revisit: Topical Steroid Addiction Symptom List

Even though I’m now writing this blog as mainly a TSW blog (it started as an eczema blog, clearly, but eczema and TSW are very different in things like their care, affect on life, moisturizers needed, etc) I still sometimes had this horrible thought:

“What if I don’t really have TSW?  What if I just haven’t found what I’m sensitive to, and will never find out, and am doomed to live with dry, painful, red, markedly imperfect eczema skin forever?”

It’s hard not to think that sometimes.  Even with all the concrete evidence out there, the firsthand accounts and the marvelous stories of people healing, TSW is just so wacky that it’s easy to get a little crazy trying to wrap your head around it.

Then I think of all the things I tried that did not make any noticeable difference in my eczema.   I think of the pictures online from other sufferers that look so much like me.  I think of the ITSAN forum and how I nod in agreement and identify with so many posts there.  I think about my history with steroid creams and things always coming back worse after the latest rounds this winter.  I fit the description to a pretty good tee.  I bring myself back to calm reality by thinking about Dr. Rapoport’s studies on TSW, all starting with eyelid dermatitis (which is, incidentally, where MY rashes also started as an adult and was the first place I ever used steroids).  EVERY SINGLE PERSON in his study that stopped all steroids was eventually cured.  That’s a 100% success rate.  You cannot beat that.  The only people that were not cured were….. the ones who kept using steroids.

So about 5 weeks ago, when I was less than a month into Topical Steroid Withdrawal, I wrote this post discussing all the symptoms and noting which ones I have.  I’m no TSW marathoner in that I’ve only been at this for just over 2 months, but my answers to the symptom list have markedly changed.  If I wasn’t convinced I have TSW from my answers to this list before – I am now.

(The following symptom list is courtesy of ITSAN.org).  I am putting my responses to the answers in bold after they are listed.

Q: What are the most common symptoms of topical steroid withdrawal?


These symptoms occur after you stop using topical steroids. You may not experience all of these symptoms, although some people do. You may start experiencing some of these symptoms within days of stopping topical steroids; other symptoms may take longer to occur or may not occur at all. You may experience some of these symptoms throughout the entire time or you may only experience them during flares.

  1. Red burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. It may take weeks for the red arm/white palm to appear as the redness spreads.
    Guess what.  I do now have the red skin that stops at the wrist.  It is pretty faint, but I have it on both arms.  You can clearly see the demarcation in the picture below and the tiny strip of “normal” lighter colored skin just before my palm starts.  The skin is also red on the tops of my hands.  Some people have an entire red hand, fingers and all, but my fingers are pretty much spared, at least on my left hand.   I also definitely had red burning skin.  My elbow and knee creases specifically would burn and feel like they were sunburnt, making it painful to move them.DSC00746

 

  1. Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. 
    YES!  Oh my goodness.  I scratched clear through the skin some days and turned it into an oozy mess.  You could have pointed a gun at me and I still would probably be itching.  Sometimes it felt completely uncontrollable.  I actually had my hands cramp up many times because I was using them to itch so much!!
      This is getting much better though.

 

  1. Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off.
    Last week I had a first.  I had to vacuum out my bed!  There were so many flakes in there that I figured it was the best thing.  If I wore dark-colored clothes to bed, they would be covered in flakes when I woke up.  This is getting better too, but I still am reluctant to wear a lot of dark clothing.  At work during the day I often escape to the restroom and scratch to my heart’s content, leaving little flakes in my wake.  I liked the image from PinkLikeaBeacon’s blog, who said something like “The cleaning lady probably thinks I’m eating saltines in the bathroom stall due to all the white crumbs all over the floor”. 

 

  1. Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.
    This is really the only symptom that I haven’t had (yet – anything could happen).  My fingers and hands have felt stiff sometimes, but have not swelled.

 

  1. Oozing skin. Ooze may seep out of skin or form in small blisters (vesiculation). You may find a hard crust over your skin – this is ooze that has dried.
    The worst site for oozing was my groin.  At peak badness, I also had mild ooze on my neck and my face (forehead and around eyes).

 

  1. Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.
    Why yes, yes, I had that.  Please see above, #2.

 

  1. Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.
    Absolutely yes.  Sometimes my skin felt exactly like a sunburn.  Again, the worst parts for this symptom were elbow and knee creases.  On the worst days, the simple sensation of clothing touching them was aggravating.  I can see how some TSWers just laid around naked when they could.

 

  1. Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin.
    I did have and still have spreading rashes.  I mean, the rashes I have currently are no longer spreading, but when everything exploded, things spread to places I had never used steroids or only used them maybe a handful of times, like my groin, stomach, and lower back.

 

  1. Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.
    Absolutely.  I would get these ‘shaking chills’ where I was cold and could not stop shaking.  I always have had cold feet for the last 3-4 months at least.  I would wrap them in towels warm from the dryer, but STILL had trouble getting warm, and they felt like ice.  I attributed it just to winter, but come to think of it, yesterday we had nights that were 20 degrees F, like very winter-like, and my feet were not especially cold.  This could be another sign of improvement that my body temperature can regulate better.  I haven’t had the ‘shaking chills’ in a couple weeks and it has been just as cold around here.

 

  1. Exhaustion.
    Oh yes.  Some days I was completely pooped.  That was why I had to go back to coffee here and there.

 

  1. Insomnia or difficulty maintaining a normal sleep schedule.
    Affirmative here too.  Things have gotten a LOT better from a few weeks ago, where I would lie awake until the early hours and I just could not get to sleep.

 

  1. Loss of appetite
    Oh, besides the edema, this was another one that I didn’t have.  I like my food.  Good thing I have a decent metabolism and now am feeling up to exercising again, because I feel like I am always hungry and always eating now!  Who wants to come with me to the all you can eat buffet?? 🙂

 

  1. Very, very dry skin that has the look and feel of plastic.
    I get the “plastic-y” skin around my eyes especially.  It will be really shiny and dry and feel like there is this layer of skin that I need to break through in order to get to the healthy, living skin underneath.  Sometimes I can pick off this layer in little peels like you would peel off a sunburn.

For the TSW friends out there…. when were you convinced that you had TSW?  Did you have most, if not all, of the symptoms on this list, and which ones were your worst?

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2 Month Progress Pics!

Today is exactly 2 months from the very last time I used (and will EVER use) topical steroids.  I have had many low days, but in the last few days I’ve seen measurable healing!  For anyone that is going through this and just starting out, I encourage you to TAKE PICTURES to document your progress.  Healing can be such a slow process that it’s easy to get discouraged when seeing how far you have yet to go, but with pictures you can see how far you have come.

(The following are pictures of my elbow creases.  I realized they’re not all from the SAME elbow crease, but the condition of both of them was pretty much the same.  For the record, the ONLY thing I ever put on this area while going through TSW was plain ol’ Vaseline after I got out of the bath at night.)

Here was one elbow crease on Feb. 25.  About 1 month in.  Very painful, red, burning.

Here was one elbow crease on Feb. 25. About 1 month in. Very painful, red, burning.

Elbow crease, on March 8th.  About 6 weeks in to TSW.

Elbow crease, on March 8th. About 6 weeks in to TSW.  Very itchy.  Still had that ‘sunburn’ feeling where it hurt to bend my arm.

Elbow crease on March 15, about 7 weeks in to TSW.

Elbow crease on March 15, about 7 weeks in to TSW.

Elbow crease this morning!  8 weeks in.  It is barely red and only has a few little scabs.  It no longer itches or burns and feels nearly normal.

Elbow crease this morning! 8 weeks in. It is barely red and only has a few little scabs. It no longer itches or burns and feels nearly normal.

 

 

 

 

 

 

 

 

Pictures of my right hand (my right hand was always a lot worse than my left, maybe because I’m right handed and touch more stuff with that hand?  not sure).

Right hand on March 3rd.  It was actually a lot redder and itchier looking than the picture shows.

Right hand on March 3rd. It was actually a lot redder and itchier looking than the picture shows.  Middle finger knuckle is very dry and wrinkly looking.  I had used steroids there a lot.  Scabs and roughness are prevalent but it hadn’t started getting super red yet.

Right hand on March 15, about 7 weeks into TSW.  Looking a little better but I still was really self conscious about my hands and always tugging my sleeves down over them.

Right hand on March 15, about 7 weeks into TSW.  This may not be a very good picture to demonstrate but you can see the blotchy redness covering almost my whole hand and wrist.   Looking a little better but I still was really self conscious about my hands and always tugging my sleeves down over them to hide.

Right hand, picture taken yesterday (3/22) at almost 2 months in.  It is definitely smoother and less red.

Right hand, picture taken yesterday (3/22) at almost 2 months in. It is definitely smoother and less red.  In this picture it looks almost normal!  In person, my hand is still a bit red and rough, but much better.

 

 

 

 

 

 

 

 

 

 

 

I have had other measures of progress too!  All the oozing on my groin and thighs has dried up within the past 2-3 days and is now just mildly dry and flaky.  My skin in general feels a lot softer.  I still do itch, but it is MUCH less intense.  It’s more of a just “my skin is dry” itch than the uncontrollable overwhelming itch.  The red areas on my face and neck are, for the most part, looking way better.  I have a long ways to go, but seeing all of this is really encouraging.

Yesterday I was also really pleased with another thing.  It is said that diet doesn’t have too much of an affect on TSW – and that we shouldn’t go crazy trying to avoid foods.  The skin is so sensitive during this time that it might react to things that it normally doesn’t react to, which gives kind of a “false positive” when it comes to food intolerances.   I had pretty much given up dairy over the past months for my eczema as it seemed to make me more itchy, which was perfectly fine for the most part – I don’t like milk, yogurt, or ice cream, and I can pretty easily stay away from cheese.  I had also tried to stay away from any tomato products as they seemed to give me perioral dermatitis.  However, there was free pizza and cheese-breads at work due to this event we had.  Pizza is my problem child, I absolutely love pizza.  I don’t eat it very often, but if it is around, I find it hard to resist.  So I figured this would be a good “test” to see if eating a bunch of dairy/tomato sauce made me itchy.  I had a couple slices of pizza and a few cheese sticks and I felt perfectly fine later and didn’t itch any more than normal and didn’t wake up with any aggravated symptoms.  This seems to support the case that my skin reacting to everything was really TSW, since a few years ago I could eat whatever I wanted; and therefore the point that I had NO reaction seems to further confirm, yes, I am healing!

I am really curious to know what pattern my healing will take from here.  Will I continue to just get better with a few minor itchy red setbacks?  Will I go through another couple rounds of big flares?  Should I expect the trajectory of taking an entire year to heal, or will I be almost normal by summer since I didn’t use strong steroids nor use them over a very long period of time?

No matter what, even if I do regress and have a setback and go through flares again, seeing this healing was exactly what I needed, knowing that my body can heal just fine when left to its own devices without steroids.  I am wishing all of you fellow TSW warriors out there continued and speedy healing!

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An Attitude of Gratitude – Being Thankful for Thankless Things

“Be joyful always; pray continually; give thanks in all circumstances…”
(from the Bible, 1 Thessalonians 16-18)

Seeing the ‘silver lining’ or the bigger purpose in things is a very powerful tool toward optimism, hope, and having control over your handling of your existence.  Joey on the ITSAN forum has a great quote in her signature – “It’s not what happens to you in life, it’s how you respond”.  So today I am making a list of some negative things in my life, and why I am actually thankful for them.  Don’t get me wrong, I’m not dancing in glorious jubilee with having to go through TSW and all this stuff, but if I have to go through it, at least I can appreciate that there may be inherent benefits to things that, on the surface, are pretty thankless.

I’m thankful that TSW and my divorce are happening simultaneously.

These are clearly the two biggest emotional stressors in my life right now, but the same basic tenant applies to handling them.  Do what you have to do to make things as right as you can for yourself.  Try to minimize stresses from them.  Utilize other people for support if needed.  When you feel like you can’t deal with this anymore, just keep living one day at a time, or even one hour at a time.  Always have something small to look forward to in order to get through the day, even if that just means finally going to bed.

The initial shock of having all these trials at once plus a very stressful time with work and school has strengthened my ability of pure, raw perseverance.  Inside there’s a little spark burning that cheers, “I’m doing it!  I’m handling all these things with grace and determination!  I did not give up and I WILL not give up!”  I feel equipped to handle almost any life event that comes my way in the future now because I was plunged into handling so many at once.

And I think the effect of handling both at once is ultimately better than if they were to have happened in succession.  Plus, when I get done with both of them, I’m going to emerge a new and better person, with healed skin and a stronger sense of identity and purpose.

I’m thankful for my itchy, red, oozing, TSW-terrific thighs and groin.

(I know, gross.)  What?!?!  How can I be thankful for that?  Well, if I had to pick a place to have my crazy worst TSW symptoms, this is really the best place.  No one is going to see it.  If I had this crap going on all over my face, you best believe I would be hibernating in a cave like a bear and not coming out for the next year.  This is still horribly annoying and itchy, but I can deal with it.  No close-up pictures of this, sorry, the one I posted before of my thigh was pretty tame.  I know you’re all sorely disappointed.

I’m thankful for winter.

Anyone that really knows me personally will know I’m a vehement winter-hater, so for me to say this is a huge departure from the norm.  Here in the Midwest, winter is hanging on with a vengeance, but this year I’m actually glad for it, as I can stay swaddled in my big sweaters and scarves for a while yet and have most everything covered up until my TSW skin gets better.

I’m thankful for TSW because it increased my school productivity.

I had tons of deadlines and projects especially these last few months with school.  If I hadn’t had TSW, I would be my normal distracted self – able to get work done, but often getting derailed by stuff like exercise, reading, and cleaning.  On days when my skin hurt all over and I didn’t even want to walk from one place to another, at least I could sit still at the computer and work on projects for a while (while of course still itching constantly).  And living with my parents means much less housework – I’m living out of one bedroom instead of being responsible for the upkeep of an entire home, which definitely used to cut into free time and school time.  Speaking of living with parents…..

I’m thankful for living with my parents.

So I guess in a warped way, I must also be thankful for my impending divorce because otherwise I never WOULD have ended up living at my parents.  But living with my parents provides a less-stressful environment for undergoing TSW.  I started my withdrawal in late January while still living with my husband.  It was pretty abysmal – he wasn’t too helpful around the house, I was red all the time and ashamed to let him see me that way, I was dry and itchy so I was absolutely no fun, I just wanted to stay in the house all the time.  He also wasn’t very understanding of my condition, advising me to see a doctor (Hello!–Been there – they’ve been no help) and getting terribly frustrated with all my weird dietary kicks like Elimination and Candida.  In retrospect, he was a piss-poor emotional support for me with TSW, as in non-existent.  (One of the very last days I lived there, the last sincerely tender loving gesture I remember him doing was to crawl into bed next to me as I was dozing off in my red state, hugging me tightly and saying he felt bad for me because “you looked like you were dying”.  Wow, I knew I looked bad, but on my deathbed?  Geez.)  However, in some ways, I don’t blame him, as any spouse or partner would definitely have their moments of getting fed up with everything revolving around the other person’s skin and how they feel.  I get it.  He didn’t have a “normal” wife anymore – he essentially had a patient on his hands who was very sick and needed much more care than he understood or was willing to provide.

So being out of that environment and with my parents seems to be good for TSW.  Certainly I have the minor gripes of living out of 1 bedroom, having to share a bathroom with everyone, not getting to cook whatever I want whenever I want, and feeling stuck in this weird quasi-adult/child state where I’m a grown woman with a full-time job but come home to Mommy and Daddy.  However, the benefits quite outweigh this – I barely have to do any house cleaning, I’m saving money on bills, I’m mostly left to my own devices, they don’t mind in the least that I became a TSW hermit who likes to just stay in the house as much as possible, and most nights I even get a home cooked meal for dinner.  Plus being around my parents is generally calming and soothing – they’re quiet people and are there to be supportive if I need it, but are non-intrusive.  I really can’t thank them enough for all the sacrifices they’ve made to allow me to live back with them again.

I’m thankful for TSW because it enhanced my sheer appreciation for all the beauty in the world.

When I’m covered in rashes, it’s easy to be hyper-focused on all the bad things.  You know how there are stunningly beautiful girls out there in the world that are super obsessed with ONE tiny facet of their appearance, like they think their ears stick out too much or something?  I have so many ‘flaws’ going on that I can’t even be obsessed with one thing anymore, I’ve transcended that whole vanity thing in many ways.  I am what I am; I make no apologies for my shortcomings, in the grand scheme of the universe I’m just a little tiny blip on the horizon, here to live out my days as vibrantly and peacefully as I can.  Life is short and it’s not all about what we look like.  That’s a big part of our self-esteem and it’s easy to get hung up on it, but I try really hard not to.  I need improvement at this, because if I look bad, I feel bad, but I still try.  So if I don’t feel beautiful, I start to revel in the beautiful things I DO notice.  Flowers.  Clouds.  Bright colors.  Luxurious smells.  And I’ve learned, through this experience, to notice the beauty in every person.  Everyone is beautiful!  It’s not just cosmetic!  I don’t care if you’re overweight/depressed/disfigured/whatever and feel terrible about yourself, I will probably notice you have really nice hair/skin/personality/kind heart/whatever… and even if I don’t notice, SOMEONE will.  Some of the most beautiful people are that way because of their actions, not because of their looks.  Remember… “To the world you are one person…but to one person, you are the world!”

Are there “thankless” things in YOUR life that you’ve become thankful for?

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8 Weeks into TSW

The thought I’ve been rolling around in my mind is the possibility of taking a short leave of absence from work.  While of course this would be beneficial for my skin, I’m thinking of it more because of the divorce.  TSW causes a lot of wonky things and erratic mood swings might be one of them, but I’ve had days where I feel I simply can’t go on and have to go sit in the restroom multiple times a day just to calm down.

Yesterday was one of those days and by the end of the day, I was absolutely CONVINCED that I was going to bring up taking a leave of absence.  Actually thinking seriously that I could do that made me feel a lot better about things, giving me an ‘out’.  Today I’m at work and I feel pretty okay – no snuffling into my keyboard, no locking myself in the bathroom stall for 15 minutes to stare teary-eyed into space and compose myself before I completely lose it.   So I vacillate between “I can totally keep working, no problem, this is great, what a cushy job” to “I CANNOT CONTINUE OH LORD GIVE ME STRENGTH”, often multiple times in the course of a single day.

So there are pros and cons to taking a leave of absence from work:

PROS:

Duh – the biggest one – I get to have time off of work to just sort of wrap my head around things.  This will also benefit my skin.  I’ll be getting more sleep, won’t have to endure any work stress, can take time to do more relaxing things, etc.

CONS:

I’ll have to announce my leave (and why I’m taking it) to my boss and team.  Also, because I’ve worked here a while and am known by almost everyone in the office, people are going to wonder where I am and I could easily see this turning into the entire office of hundreds of people knowing my divorce status.  Which isn’t a big deal per se, but I don’t want people coming up to me apologizing, treating me differently, talking in hushed tones to me, etc.

If I take a leave, some of it is going to be unpaid.  I’m saving a lot of money by living at my parents, but I still have to consider the loss of income.  I think the time to regroup outweighs the loss in earnings, though.

It’s going to be super weird when I come back from the leave.  Everyone will ask where I am, and I don’t want to have to explain divorce a million times.

I could also see going pretty crazy with being able to sit at home all day and obsess about my skin.  I don’t itch a lot while working because it’s socially unacceptable to start scratching away and I can distract myself, but I itch out of habit ALL THE TIME at home.

And, I also wish I could foresee when the peak ‘badness’ of TSW will be – I would love if it coincides with taking a leave.  But I have the uneasy thought – what if I take a leave for a couple weeks, come back, and then my skin decides to explode?

Have you ever taken a leave of absence from work or school for mental/emotional reasons?  What was your experience with it helping you (or not)?

But, now I am 8 weeks in.  About to enter the 3rd month soon.  I’ve entered a new stage and that stage is resigned acceptance with this TSW thing.

I already went through the stages of doubt, denial, fear, and optimism.  But now I’m completely used to having crappy skin every single day.  I’ve had it for so long that it’s just a part of me.  But I’m a little nervous because from what I’ve read, the 3rd/4th months can be really tough where a flare ‘peaks’, so we shall see.  I’ve never had any concrete “peaks” so far, just periods where areas would gradually get worse and then gradually get better.

The bad news: Everything on my body is the same if not worse.  The rash is creeping around my torso and might be spreading downward from my neck to my chest, because my chest has been really itchy lately and has a few rash spots on it.

The good news: I don’t itch so badly in the evening.  The “itch attacks” I do have are less frequent and not so intense.  My face looks slightly less like “Tired-looking girl with terrible red skin affliction” to “Tired-looking girl with blotchy and uneven complexion”.  The skin on my face feels a lot softer, although by the end of the day it’s still dry and tight.  I don’t get the “chills” so much any more.  So I am glad to see those improvements!

New “symptoms” I’ve noticed, that I’m not sure if they are connected to TSW or not:
– I have had brief waves of really intense nausea for the past 2-3 nights.
– I have to think since TSW messes with so much of the body, it also affects hormones, because my monthly cycle is disrupted…it’s either going to be really late or not come at all.

But regardless – here is my optimistic thought for the day!  Happiness CAN coexist with life stress, TSW, grief, anger, loss, chronic disease, and whatever else anyone can go through… just have to keep convincing ourselves of that!

Being happy

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More Pics, and The Dangerous Ride

One big non-skin related complaint about TSW is the effect on sleeping patterns.  Whether this is from unconsciously itching at night or from something with cortisol levels, it’s pretty certain that your sleep will be disrupted in some way with TSW.  I’ve been no exception to this – during the weekdays while I work can be rough, since it will be near midnight (or later) before I finally doze off, and then I have to wake up around 5 am.  Taking an antihistamine can help knock me out earlier, but then I wake up really groggy.

During one day last week upon my morning commute, my eyes kept closing on the drive in, no matter what I tried to do (singing loudly, pinching myself, chewing gum).  Handling a speeding car at 70+ mph on the expressway while being about to nod off is pretty perilous.  I made it to work just fine, but recognized this is a problem.  Then yesterday, on my afternoon drive home, I didn’t even THINK I was that tired… until my eyes popped open just in time for me to be about to collide with the car in front of me.  (I didn’t even realize my eyes had closed!)  Instinct instantly kicked in and I quickly swerved the wheel to the right lane, narrowly avoiding rear-ending them.  I gave up all caffeine previously, but I simply had to go back to having a little bit of coffee here and there in the past weeks, to function and to keep me from not getting into traffic accidents, or worse yet, physically hurting or killing myself and others!  I didn’t want to do it as the adrenal glands are already stressed in TSW (you can read ALLLLL about different authors’ perspectives about caffeine and adrenal exhaustion and why we shouldn’t be slugging down this stuff all day here).  However, the overwhelming response seems to be that having it here and there is not overwhelmingly terrible, as long as you’re not having the stuff every day or becoming addicted, needing more and more (or sugary treats) to continue having a “high”.

What do you think?  Should caffeine be avoided at all costs with TSW?  Or is it ok to have it sparingly?

Now, here are some pics from yesterday – I am almost at the 2 month mark.  Honestly these pictures make things look better than they are… My skin is redder than the pictures reflect.  And even if it doesn’t LOOK too bad, it sure as heck hurts and burns and itches.  While the worst parts are the areas where I used steroids – (elbow creases, knee creases, back of arms, neck, face, around eyes) – I also have a very itchy lower back, stomach, and groin/upper thigh area.  I never used steroids here or just used them once or twice.   I don’t have TSW symptoms over my entire body (thankfully) but I am wondering if it’s going to spread to a full-body thing or not?  Hopefully not as I wasn’t a very hardcore user.  I like to look down at my good old reliable feet and see an area that’s always been smooth and clear and rash-free.  🙂

Pointing to a clear delineation where my red neck stops and my normal upper back begins.

Pointing to a clear delineation where my red neck stops and my normal upper back begins.  The lines in my neck are also more prominent because the skin is so dry.

Elbow crease.

Elbow crease.

Back of arm.

Back of arm.

 

Closer view of back of arm.

Closer view of back of arm.

 

Very blotchy groin and upper thigh.  The arrows point to a few "normal" colored areas.  This has probably been the consistently worst area in the past few weeks, with alternating between oozing and being dry and itchy but always being super red.  Sometimes I can feel the heat rising off of the skin.  This area is probably also bad because it can get sweaty or rub against clothing.  The lymph nodes in my groin remain swollen and are probably about the size of blueberries or small grapes.

Very blotchy groin and upper thigh. The arrows point to a few “normal” colored areas.  It’s like I’m polka-dotted down there!  This has probably been the consistently worst area in the past few weeks, with alternating between oozing and being dry and itchy but always being super red. Sometimes I can feel the heat rising off of the skin. This area is probably also bad because it can get sweaty or rub against clothing. The lymph nodes in my groin remain swollen and are about the size of blueberries or small grapes.

 

Very dry neck by the end of the day.  It is peeling and flaking and if I pick at the flakes, underneath there is a smooth red layer of baby-soft skin.  Too bad the process constantly repeats itself every day, but one day the baby soft layer of skin will be there to stay with no flakes!!

Very dry neck by the end of the day.  This is with concealer on my face, by the way, so I don’t look as red as I would.   It is peeling and flaking and if I pick at the flakes, underneath there is a smooth red layer of baby-soft skin. Too bad the process constantly repeats itself every day, but one day the baby soft layer of skin will be there to stay with no flakes!!

 

Close up view of dry, flaky neck.

Close up view of dry, flaky neck.  You can see the little tiny cuts in it from being so dry, too.

 

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Living with TSW – A Day in the Life of My Skin

This is an overall day in the life of my skin over the past 2 months, since I’m close to the 2 month mark of Topical Steroid Withdrawal.

Early Morning:
I used to love early morning – morning was my favorite time of day.  I still LIKE morning, but now it’s tarnished by the apprehension of what’s going to greet me in the mirror.  My alarm goes off and I gingerly run my fingers over my face and neck and around my eyes, tactilely assessing how bad the day’s flakes, dryness, and puffiness are going to be.  Wishing I could just stay in bed for days on end until my skin looks better, I drag myself out of bed and over to the mirror.  If I have puffy eyes, it is going to be in the morning, and if I have to put ice on them, my mood immediately dips a notch.  The left side of my face has always been more problematic than the right, and my left eye will get way more puffy or dry and make me look like a half-elephant.  I guess I should be glad that at least the other eye usually behaves, but the idea of looking asymmetrical, especially since I feel like everyone I talk to looks me in the eye and notices, really makes me self-conscious.  I can tell that I’m healing though, because in Month 1 of withdrawal I was waking up with puffy eyes every day, and now I don’t have to put ice on them in the morning.  My face is usually, actually not too red in the morning, but this is when it is super dry since I’ve rolled around restlessly during the night and probably rubbed off all my Vaseline I put on.

Later in the Morning:
I’m off to work after having carefully applied moisturizer and concealer and choosing an outfit that either hides my extremely red neck, or carefully applying concealer to that too.  I’m sure it would be a little better to just let the skin be free and not covered by makeup, but I’ve patch tested my concealer and it doesn’t provoke any reaction.  Also, if I don’t use any, I itch just the same, so I’ve come to the conclusion that for now, I use it in order to get by, although now I have to use it over almost my entire face.  There was a day early on before withdrawal when I was flaring where I barely used any concealer and all the people’s stares hurt my feelings.  So no more – I do what I have to do to feel human.  Now that I’m in month 2, my neck is red almost all the way around, the border stops where my neck ends and my back starts – where a t-shirt collar would start – my upper back has never had any eczema and has been a completely clear portion of my body (one of the few) throughout TSW – probably because I never applied steroids there.  Also, now my neck is so completely dry and flaky that any concealer looks really bad and emphasizes the dryness.  I either wear a high neck shirt or a scarf to work every single day.  I’ve developed a new appreciation for accessorizing with scarves – I have quite a wardrobe of them now.  They’re the only outfit accessories I can have since I had to stop wearing all jewelry – necklaces rub on my raw neck, bracelets draw attention to my rashy hands and wrists, my ears ooze and flake so earrings are out, and well, I don’t wear my wedding rings anymore since the divorce is underway.  I also have to choose shirts with extra-long sleeves since my hands are really bad.  However, this is a pretty good time of day – my second favorite time besides bathtime/bedtime.  I like being in the car driving to work, and I like arriving for the day and feeling productive, getting ready to get things done.  Because my skin has just been moisturized, it usually doesn’t itch and I’m able to put it out of my mind for the time being.

Midday:
I head to the bathroom to wash my hands before I eat lunch.  I am carrying my own bar of soap from home (Dove sensitive) because my skin can’t tolerate the soap in our work’s bathrooms.  My hands are ripped up enough already, they don’t need any more irritants!  In the privacy of the bathroom stall, I pull out a tiny mirror that I always carry in my pocket, checking my face and seeing how it’s holding up.  If my face starts looking bad, I have a little emergency stash of moisturizer, concealer, and tweezers back at my desk.  I almost never pull it out, because I don’t like to obsess about my face at work.  I’ve gotten used to it and so I leave it alone.

Afternoon:
We probably have some kind of work meeting, and I start getting more uncomfortable and dry.  I covertly try to itch places where no one will see.  I constantly tug my shirt sleeves down over my wrists so that no one will see my hands.  It’s not that I care if people SEE them, as I no longer have much shame about looking bad, but I don’t want people asking stupid questions about my skin.  This is when boredom and annoyance hit, where I start to get fed up with sitting at my desk and want to go home for the day.  This is also the time when I begin to get a little bit itchy… or, well, a LOT itchy.  I escape to a restroom stall again and give my legs and thighs a good hard scratch.  Often I scratch until my skin gets raw and oozy.  I can’t control it a lot of the time.  This is also the time when, if my eyes are going to start bothering me, now is the time that they really start to annoy me.  The skin around my eyes has been dry and tight ever since I started TSW and on occasions before that, and it starts to get very uncomfortable as the day wears on.  It doesn’t help that my work involves staring at a computer screen all day either, since my eyes always feel better on the weekends.

Late Afternoon:
Oh thank goodness, work is over.  Even though I want to pick at my face and itch it, I can resist the temptation for now because it doesn’t truly itch, and I don’t want to get all flaky when I have things to do yet.  However, I can’t wait to get home as the first thing I’m going to do is rip off all my clothes and scratch everywhere.  It’s bad, but it feels so good to itch!  I worry that even when I am done with TSW, that I won’t be able to stop itching as it will be such an ingrained habit.

Evening:
Around 7 or 8 pm, I have a “skin curfew”.  Every single day around this time, without fail, my skin begins to itch in waves that do not stop and are not satiated until finally I have scratched until I am flaking and oozing a bit.  I am told this is normal for TSW and has to do with a drop in cortisol levels. This is the “please God make it stop” type of itching that I cannot distract myself from, no matter what I try.  There is no self-control or willpower on earth that could keep someone from this – I’ve tried!  Because I’ve been covertly itching the rest of me throughout the day, this “itch attack” mainly involves my face and neck.  I can somewhat divert this itch attack if I get in the bathtub and go through my routine early in the night.  Otherwise it’s a lost cause.  Very thankfully, I’ve noticed in the past few weeks that this “itch attack” has been minimized or even sometimes can be avoided.  For example I’m posting this at night around 9:30 and I managed to not go crazy clawing at my face and neck, I just itched a little bit along my jawline and then I was able to cut myself off and stop.  I consider that progress!

Bedtime:
Time for my routine of bathing, exfoliating, moisturizing, etc.  My face and neck are dry and flaky from having gone through the entire day.  I’ve hit upon the system of rubbing olive oil on and then using very finely ground oatmeal mixed with olive oil and water to make a paste on my face and gently rub away the dry skin.  Then I rub at the skin very gently with my fingertips and more little rolls of skin come off.  I go through my other rituals of washing and moisturizing, etc. and then give myself a last look in the mirror.  Although my skin is extremely red and patchy, it at least looks clean and smooth – right before I smother it in oil and Vaseline and get all greasy.  I love nighttime because I finally get to be in bed.  I’ve been looking forward to this all day, from the time I got up.  Bed is my “safe place”, my haven, my warm cocoon.  Here I can sit alone and not have to think about my skin.  Even though TSW has messed with my sleep patterns, leaving me with many nights of lying awake until early hours, here no one is looking at me or judging me, and I’m alone in glorious privacy to finally nod off, putting another day behind me, another day closer to healing.

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50 Days into TSW

Very quick update on 50 days in (making 7 weeks of withdrawal).

Monday was a pretty amazing day.  I actually went for a run wearing SHORTS (yes my legs were very far from perfect, but they felt good and no one was going to see them up close) and for a little bit, I forgot all about eczema and TSW.  My elbow creases were pink and smooth and save for the clear demarcation of color between the red of those and the paler color of the rest of my forearm, they were looking really healed.  I could have worn a t-shirt in dim light and probably looked fine.  The rest of me was about the same, but I was so thankful to be seeing signs of healing that I was pretty overjoyed at those small improvements.

Then…

I was reminded that this journey is often described as “two steps forward, one step back”.

Yesterday my neck had been itching for literally three of the last hours at work.  I used all the sheer willpower I had to not itch at it.  Then I had to go to my former house (my husband’s house – I guess I’m just going to start calling him my ex-husband) to get some things.  I could not resist the urge to itch anymore and promptly started ripping at my neck, leaving it scratched and oozing.  Well THEN I had to go to class, so I was less than thrilled by having to sit all evening in a lecture.  Oh, plus a classmate started telling me I look very tired and was I okay – so I gave him my explanation about how steroids poisoned my body.  He just kept looking at me so I felt the need to babble awkwardly about the topical steroids and that I would be okay in a while, it just takes time.  But then he just started asking a bunch of questions, saying I need a good dermatologist, and I didn’t feel like dealing with it.  I was actually going to skip school for the third time, but I figured I better go before I miss too much.  Being away from home for over 12 hours between work, ex-husband house, and school left my skin feeling stressed and unhappy, making me itch even more when I finally got home.

So I had a stressful day yesterday and I also had coffee.  Yes, I went back to coffee after giving it up.  I try to limit myself to 1-2 cups PER WEEK but with the whole adrenal suppression thing of TSW, intuition tells me that overworking my adrenals with caffeine is probably not what they need.  However, the double-edged sword is that it wakes me up and helps me function and also boosts my mood – all things that I really need with TSW.   Not sure if coffee had anything to do with my skin, therefore.

So today I appear to be starting another flare, since in the previous days I was doing better and getting some relief.  I need a moment to whine.  I am so done with TSW.  I have had it!   It can go away any time now!  I know other people have had it much worse off, and I know I should be thankful that at least I’m 50 days in.  But today I feel scraped all over, my face is tight and dry, my neck is stiff and itchy,  my elbow creases have gone from smooth pink skin to wrecked red scratched skin, my hands are raw, whine whine whine.  My face is SO red and I REALLY wish I could take a leave of absence from work.  Working 40 hours a week and doing TSW is no joke.  Even a week off work would help (of course then it would mean explaining to all my co-workers why I was gone), but the problem is that I would need a doctor’s note, and any dermatologist I see is NOT going to be understanding of TSW – I’ve SEEN probably 6-7 dermatologists in the area over the years and none of them really impressed me.

Bad day in skin world – I’m going home and going to bed after work today!  I’ll be back next time with some more sunshine and optimism hopefully instead of complaints 🙂

 

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The Tiny Respite and the Voice of God

Skin update: I’m past the 6 week mark now.  I haven’t had any huge radical changes (good or bad) but I’ve had a couple positive ones that added up, so I feel like I got a bit of a tiny respite!

  • I’m sleeping better at night again!  Maybe this wasn’t even TSW related but more of a stress thing, but I no longer lie there in the dark for 2-3 hours trying in vain to sleep.  I can fall asleep pretty quickly and I STAY asleep.  This is a big relief.
  • My skin is trying little by little to make oil again.  I actually almost cheered for joy when I found two small pimples.
  • The swollen lymph node in my armpit went away.
  • My face is slowly getting softer and less dry.  I used to get all dried out by the afternoon and could barely smile or laugh because it was really uncomfortable.  This week I could smile and laugh freely most of the time and boy did it feel good to actually have a genuine smile.
  • I also seem to be a little less red in the face.  I may credit starting to take Turmeric capsules for that one – Heather from Eczemancipated told me it helps with the redness.  Thanks Heather – I think you were right! 🙂
  • Overall I am less itchy.  Sure, I still get the 2 pm, 5 pm, and 8 am itchy fits (does anyone else have a specific time of day when they get really itchy?) but some days I’m able to leave things alone for the most part rather than always itching every day.  For example last week I was really ripping at my neck every night – this week I was able to leave it alone for a couple different nights.  Don’t get me wrong… I still itch very much so, but the intensity and frequency is slightly down.

Other observations from the past few days:

  • I get these “shivering fits” sometimes where I just shiver and shake and am really cold, even if there is no REASON for me to be cold, like if I’m inside at home or work.  Or I’ll feel hot and cold simultaneously, I might have mentioned that before.  I’ve read about this on the ITSAN forum so I’m not real concerned.  Actually the more I read, the more I’m sort of relieved because all signs seem to point to me having TSW and it’s nice to finally put a name to everything and know I can be healed eventually.
  • My hands and wrists are slowly getting more rashy and red.  They look pretty chewed.  I tried to take a picture of them but it didn’t do the red justice.  I am wondering if this means I will get the “red sleeve” sign of TSW.  Since it’s spreading upward, blotchy and red, to the backs of my hands, I went out to Target and got some more tops with extra-long sleeves so I can cover them up at work.  (They’re cardigans which have the effect of making me feel like a frumpy librarian.  Nothing against cardigans as they can be sexy or cute, and the one I got was REALLY SOFT.  But when all this TSW is over with, I’m vowing to wear short sleeves almost every day even in the dead of winter and APPRECIATE having soft, smooth skin).  Normally I wouldn’t really care about my hands looking so terrible, but I work a desk job and talk to people or have to show them things on the computer and I don’t feel like having them notice my hands while I’m typing or whatever.

And now a few pictures:

Crease of my elbow.  Really it's redder than the picture shows.  It hurts like all heck, like a sunburn.  I definitely used steroid here, but thankfully it seems pretty localized, as my forearms are mostly okay.

Crease of my elbow. Really it’s redder than the picture shows. It hurts like all heck, like a sunburn. I definitely used steroid here, but thankfully it seems pretty localized, as my forearms are mostly okay.

 

Stomach and hipbone rash.

Stomach and hipbone rash.  Not getting any better.  Then again, it’s not spreading, and I’m only at the 6 week mark.

 

And Now…..I am going to say something in this post that is going to make me sound like a wack job.

Let me preface this by saying, now that I have accumulated many wonderful blog friends and readers, I understand that some of you are Christian, some of you are atheist, and some are somewhere in between, or have different beliefs entirely – you may ascribe to Hinduism, Judaism, or the Church of the Flying Spaghetti Monster.  This is all fine and good, I’m not going to judge you if your beliefs happen to differ.  However, I know our society can get a little squeamish talking about anything with a religious bent.  I’m Christian, I do believe in God, and I’m not ashamed of it.  If I didn’t believe in God and have comfort and faith to get me through things like TSW and this divorce, I’d be far worse off!

That being said, on Sunday, God communicated with me.  Not once, but twice!

It wasn’t like a giant hand reached down from the clouds, tapped me on the shoulder and said, “Hey you.  You there, with the red skin.  Pay attention.  I got something to say.”

The first one was such an uncanny coincidence that I can’t help but ascribe it to a higher power – in my case, God.  I was in the car with my parents, inwardly steaming and fuming about my husband and the divorce thing.  I cycle through moods of sadness, peace, anger, nostalgia, and pretty much anything else under the sun.  At this particular point I was very angry.  I kept thinking, “I want to hate him, but it’s wrong to hate him.  I want to hate him so much, but it won’t be productive.”  Basically I was mentally wrestling with the concept of HATE, turning it over and over in my head.  At that moment I looked up, I was passing a church whose marquee sign said, “IF YOU HATE, YOU CANNOT HAVE PEACE.”  Of course!  Hate is the wrong emotion to have here.  It’s very destructive and will only eat away at my self-preservation and prevent me from letting go and moving on.  These were wise words put in my path for a reason.

The second incidence happened later that night.  I was in the bathroom getting ready for bed, moisturizing my red and dry skin and just sort of mentally griping, why do I have to go through this now, why me, I look ugly, why must I be all red, is there a point to this, etc.  At that point, a voice in my head uttered a phrase.  This all sounds very strange, but it wasn’t a conscious thought – it was PUT there, as plainly as someone was speaking to me, though it wasn’t an audible voice.  Even writing this now, I feel sort of silly telling about it, as I tend to be quite logical and rational, but I can’t deny that this was a very unusual thing.  The voice said matter-of-factly, “You wanted to do great things.”

I immediately knew what this meant.  I was being put through all these trials at the current time so that I could emerge strong and vibrant and victorious and indeed, DO great things.  What those things are, I don’t know, but it was immensely comforting to be reminded that God has something in store for me and that these trials are happening for a purpose.

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