Monthly Archives: February 2013

Now He’s Just Somebody That I Used To Know

So in my current life, not only am I working full time at a fast-paced job, attending school part-time for my Masters degree, dealing with eczema and TSW, but I’m embroiled in a bitterly sad relationship struggle with my husband – he wants to divorce, I don’t.  I still have hope for our future and love in my heart for him – he doesn’t.  And this came as quite a shock.  To him, the relationship is OVER.

Now that I’ve been living apart from him and living at my parents’ house for a week and a half, I have to say it was extremely helpful removing myself from the emotionally toxic environment that my own home had sadly become.  I come home to kind people that love me, rather than someone brusque that tries to avoid me and who told me recently that he could no longer be ANY sort of emotional support as I go through TSW (!!!)

Having some time to think things over and being husband-less, barely communicating with him except some emails and texts here and there, I kept coming to the conclusion that although it may be better, albeit initially much more painful, for me as an individual to go and be set free, I STILL LOVE HIM.  Of course!  What can I say – we’ve been together for 10 years and being without him for 10 days made me miss him terribly.  Or maybe I should say, made me miss the way things WERE when he loved me back.  I got really, really sad on Monday and almost lost it at work (very atypical of me) because I kept thinking I would never get to hug him again – at least not as his wife.  I just miss the simple things – we were very affectionate people and used to hug all the time.  Being around him at its best was infinitely comforting, basking in the warm glow of being near the one you love.

I sent him a very emotionally neutral text today with a funny/cute picture of a bear, since we both really liked bears.  I was just sending it as a friend and saying “This made me think of you, I thought you’d appreciate it”.  When, hours later, my phone beeped back with a text, my heart leaped a little bit.  Maybe this text reminded him of the way things were!  Maybe he didn’t respond right away because he was carefully phrasing his text asking me to come back and that he misses me and that he’s so sorry he put me through this, he was wrong and we really can maybe try to work things out, that he still loves me.

I click the text, begin to read, and then my heart drops, I break out into a cold sweat and begin to subtly shake all over.

Marriage eggParaphrased, the texts read that he has signed divorce paperwork today with an attorney.  The process takes 60 days at minimum.  (Swell, I have a spring birthday, so for a celebration this year I guess I’m getting the gift of losing a husband.  Nice.)  And that I should seek legal counsel if I haven’t already.  He thought it was better to get it moving and move past our relationship as fast as possible.

My state is a “no fault” state, meaning that neither party has to prove anything amiss for divorce to happen.  In essence, he can divorce me without my consent, and clearly he’s starting on that path since I had NO IDEA he was going to go through with paperwork that fast.  I didn’t even have time to find my own attorney or lawyer yet!  And just a few weeks ago, when we still lived under the same roof, he assured me that he wasn’t going to go through with anything for a few months until I graduate from school.

divorceSo much for that.  All of these experiences are teaching me I have strength and endurance beyond what I thought possible.   I just keep waking up day to day and moving through life as best I can.  I need to win the friggin’ Oscar award for Best Individual Building Character Among Life’s Tribulations.

But he didn’t have to cut me off
Make out like it never happened and that we were nothing
And I don’t even need his love
But he treats me like a stranger and that feels so rough…
…Now he’s just somebody that I used to know.

 

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Six Things That Help TSW and Eczema

Warning!!!  Two more photos of eczema/rash/TSW ahead.  If you don’t like looking at this stuff, then don’t.  Many people have said incredibly kind words commending me for posting photos.  To be honest, it was seeing photos from OTHER people that really helped ME, so hopefully this will help others going through it too.

The flaking and peeling and oozing is a pretty typical sign of TSW.  This picture really seems to demonstrate that this is probably what I have.  It’s very prominent here under my nose and under my lip.  By the end of the day, my skin in some places is so dry and tight that the top layer begins to crack and flake.  Then these flakes, if they are peeled off carefully, reveal new red skin underneath.  And then the next day, the cycle starts all over again.  It’s like I have a friggin’ dandruff mustache and beard!

You can call me Little Miss Frosted Flakes.  Except the flakes around my mouth are unfortunately not delicious and made of sugary goodness.

You can call me Little Miss Frosted Flakes. Except the flakes around my mouth are unfortunately not delicious and made of sugary goodness.

Then when I posted all my photos yesterday, I realized I didn’t take any body pictures, only my face mostly.  I took a couple of my legs, but they didn’t really turn out well, so here is one of my arm.

Left elbow crease.  Hurts like heck.  Trying not to pick at it.  Now I know what other TSW people mean when they said your skin feels like it's been sunburned and is horribly uncomfortable.

Left elbow crease. Hurts like heck. Trying not to pick at it. Now I know what other TSW people mean when they said your skin feels like it’s been sunburned and is horribly uncomfortable.

Now…. SIX THINGS THAT HELP ME, PERSONALLY.  Disclaimer that maybe these things wouldn’t work for everyone, but I’ve found them worthwhile enough to share.  In no particular order:

Avene tolerance extreme

Avène Thermal Spring Water (57%). Avene Thermal Spring Water (Avene Aqua), Glycerin, Mineral Oil (Paraffinum Liquidum), Squalane, Carthamus Tinctorius (Safflower) Seed Oil (Carthamus Tinctorius Oil), Cyclomethicone, Glyceryl Stearate, Sodium Carbomer, Titanium Dioxide.

1. Avene Tolerance Extreme Cream.

I don’t remember the kind blogger that told me about this one, so forgive me if that’s you reading this (shout out to you if so!!), but I took your recommendation and I’m glad I did!  This stuff is NOT CHEAP but after seeing that almost every single person that reviewed it on Dermstore.com gave it a full 5 stars, with some of them saying their face was a red mess and this cream was their savior, and seeing that it had only 9 ingredients (and no crazy long chemical names or bad stuff like fragrance, parabens, etc)., I decided to spring for it.

While I’ve read conflicting things about mineral oil (some people believe you shouldn’t use it, as it isn’t “natural”, and others say that it’s very mild and the skin is quite unlikely to react to it), I figured this product was worth trying.  After all, many TSW and eczema sufferers (myself included) use stuff like Vaseline in huge quantities, and that isn’t “natural” either.  (I would love to switch to purely some kind of natural oil, but an oil by itself isn’t moisturizing enough right now).

Right now it is rare to find a product that doesn’t feel irritating or sting-y going on.  This glided on, helped my skin feel moisturized, and my skin actually looked better the next day!  I’ve only been using it for 2 days so far since it had just come in the mail, but I am really liking it.

 

 

2. Eucerin calming body wash EUCERIN CALMING BODY WASH.

This product contains omega oils and is made for
sensitive skin.  My bathtime routine includes soaking in either dead sea salt, baking soda, or oatmeal (to
soothe and stop itching) and then I use this wash over
any really itchy spots.  It isn’t drastic, but it does seem
to help calm my skin a little and lock in some extra
moisture when I get out of the tub.

 

 

 

3. VANICREAM SHAVE CREAM.

I could be the Vanicream poster child, I’ve purchased and/or used at least 7 or 8 of the products they make (not all of them worked well for me, though).  I use their Free and Clear shampoo religiously, and somewhat recently I sprung for their Shave Cream.Vanicream shave cream  Again, it’s not very cheap (about $8-10 a tube) but it lives up to its claims as being made for sensitive skin.

If you’re expecting the huge foamy stuff that sprays out of a can, that’s not what you get with this – it’s literally a cream, kind of the same consistency as conditioner maybe, but not as slick.  I would love to just let my legs go and grow hair, but I don’t like feeling like Sasquatch.  It’s not the most ideal thing to be scraping my already-irritated legs with a razor, but if it has to be done, the Vanicream shave cream leaves them feeling soft and smooth.

4. RUNNING TIGHTS.

Running tights Normally I was always one to sleep in shorts.  I didn’t like typical “sleep pants”, as they would either make me too hot at night or wind up all twisted and bunched up around my legs.  I wouldn’t have changed my shorts-wearing habit, except I discovered that I tend to claw at my legs at night while I sleep, and shorts leave them bare and accessible to this damage.

So one day I got the bright idea to don an old pair of running tights instead.  This was a great idea – they’re tight enough where I cannot get at my legs and breathable enough where I stay warm but not TOO warm.

 

5. ANTIHISTAMINES.

Antihistamines have been mentioned by many, many people, but I didn’t develop a unique appreciation for them until the last few weeks when taking them provided me a blissful, nearly scratch-free, zonked out slumber.  In the throes of feeling like you cannot stop itching and feeling like your skin hurts all over, they are a godsend.  I try to take them sparingly though, as I don’t want to develop a tolerance if that is possible.  And the great thing is that they’re cheap!  I bought a store brand and I think I spent about $3.

6. EXERCISE

Yesterday, I was being a big whiny baby, internally.  My legs hurt so very badly that it was uncomfortable to change positions and walk.  One of the symptoms posted on ITSAN is that the skin can be raw and painful, feel like a bad sunburn and be sensitive to the slightest touch.  Yep, I’ve got that!  It’s particularly exquisitely painful because the worst parts are in the creases of my knees – areas that need to bend anytime you want to stand, sit, or walk.  I’m over here hobbling around and lowering myself into chairs and toilet seats with the slow deliberation of a senior citizen.  So today, it feels about the same, but I decided I must stop feeling bad for myself and try a bit of exercise at the gym.

Exercise habits are one thing that TSW has “robbed” me of.  I used to be a pretty avid runner – now I haven’t ran a single step in over a month.  I used to love high-impact, sweaty exercise – now I’m reticent to sweat and move that vigorously.  I’ve been just doing varied incline treadmill walking now a few times a week, and sometimes some weight training.  One day I will get back into my beloved running and Zumba and kickboxing.  So anyway, once I actually got on the treadmill today, I was pleased to find that the very act of walking and listening to music was enough to distract me from most of the itchy and painful bodily sensations.  Even though I was reluctant to do it at first, I’m glad I did, and I have to remember to keep doing it regularly!

What other things would you add to this list as “must haves” for eczema and TSW?

TSW and Eczema in Pictures

Although I still don’t want to post a full-on picture of my face and reveal my identity on this blog, I wanted to give a pictorial synopsis of the past 6 months or so.  So many eczema and TSW bloggers have been very courageous in posting ALL KINDS of photos, and I want to join that ranks as these types of blogs can be so helpful to others going through the same thing.

I’m not one to whine and complain (okay, I guess technically I am, as that’s the whole nature of having a blog about a chronic disease, LOL).  Maybe some of you reading this blog who have had it REALLY bad are looking at some of the pictures and saying “So what, lady?  I had a face that completely peeled off and oozed noxious substances with my TSW.  You’re not all that badly off.”  So I’m not here to say “Oh, poor me, feel sorry for me” – not at all.  These are just MY pictures from MY experience – me, as a 26 year old white female who didn’t use the strongest steroids nor used them for a long, long period of time, and also one who got plenty of exercise and followed a mostly clean, near-vegan diet  (I’m hoping that will work in my favor to help with healing faster).  Maybe one could term this “moderate TSW”.

Me, around June of this past year before the whole mess started.  My eczema ALWAYS gets better in the summer to the point where it only has a minimally intrusive effect on my life.  Here, I had a little bit of face rash going on, but nothing huge.  Note the short shorts and tank top - almost no limb eczema!  (at least nothing you can see here).

Me, around June of this past year before the whole mess started. My eczema ALWAYS gets better in the summer to the point where it only has a minimally intrusive effect on my life. Here, I had a little bit of face rash going on, but nothing huge. Note the short shorts and tank top – almost no limb eczema! (at least nothing you can see here).  This would be amazing now… can I rewind a half-year and go back to this?

September 2012.  How things started.  I don't know if this was from TSW or using a product with aloe or what, but I had a few patchy rashes in specific places: around my eyes, on the side of my face, and on my neck (you can see the slight redness in this picture).  No huge deal, but it wouldn't go away.

September 2012. How things started.  Very mild. I don’t know if this was from TSW or using a product with aloe or what, but I had a few patchy rashes in specific places: around my eyes, on the side of my face, and on my neck (you can see the slight redness in this picture). No huge deal, and this was on a good day, (plus you can’t see my eye, which had red all around it) but it wouldn’t go away.  I had made all kinds of dietary changes, environmental changes, facial product changes, etc.  Around this time I sought out a naturopath.  I actually took a big turn for the WORSE after taking her remedy, so it was no help.

Meanwhile I would get weird sporadic rashes.  This photo has been posted before somewhere in another post I made, but I had this crazy armpit rash during the fall.  I was using the same deodorant I always used, so I didn't feel like it was a contact dermatitis thing.

Meanwhile later that fall, I would get weird sporadic rashes. This photo has been posted before somewhere in another post I made, but I had this crazy armpit rash during the fall. I was using the same deodorant I always used, so I didn’t feel like it was a contact dermatitis thing.

My facial rashes kept slowly getting worse, but I would have a few blessed days of respite.  I remember having one in mid-October where I was doing a big event for school and I was SO THANKFUL that I didn't look weird.  In this picture it was early November and I had a job interview.  A few days prior I was all rashy and getting depressed about showing my red self at this job interview.  I was so happy to have completely clear skin on this day.  I even got to wear some lip gloss which I don't normally wear since I would often have perioral dermatitis going on.

My facial rashes kept slowly getting worse, but I would have a few blessed days of respite. I remember having one in mid-October where I was doing a big event for school and I was SO THANKFUL that I didn’t look weird. In this picture it was early November and I had a job interview. A few days prior I was all rashy and getting depressed about showing my red self at this job interview. I was so happy to have almost completely clear skin on this day and barely need any concealer. I even got to wear some lip gloss which I don’t normally wear since I would often have perioral dermatitis going on.

November 2012.  When I discovered I was allergic to aloe.  I had used pure aloe vera gel the night before on some spots on my limbs.  I woke up with my eyes almost puffed shut and my face scary inflamed and red almost all over my face and neck.  This picture does not do it justice.

November 2012. When I discovered I was allergic to aloe. I had used pure aloe vera gel the night before on some spots on my limbs.  Those spots became extremely rashy, plus I woke up with my eyes almost puffed shut and my face scary inflamed and red almost all over my face and neck. I don’t even want to think what would have happened if I had put the stuff directly on my face.  This picture does not do it justice, especially since I refused to reveal my sad little puffy eyes.

November 2012.  Two days after the aloe rash incident, and the dermatologist had given me mometasone furoate, a medium potency steroid to clear up my rash.  Just two days of using the stuff and it was like magic.  Too bad steroids can be the devil incarnate.

November 2012. Two days after the aloe rash incident, and the dermatologist had given me mometasone furoate, a medium potency steroid to clear up my rash. Just two days of using the stuff and it was like magic. Too bad steroids can be the devil incarnate.

The neck rash that developed very soon after starting the candida diet, and stopping topical steroids.  It looks like two very large red angry hands wrapped themselves around my neck.

The neck rash that developed very soon after starting the candida diet, and stopping topical steroids. It looks like two very large red angry hands wrapped themselves around my neck.  It made me want to develop a winter wardrobe consisting mainly of turtlenecks and scarves.

My face earlier this month, in the throes of what seems to be TSW.  A red, dry, sometimes flaky rash covers everywhere I've ever used topical steroids.  You can see that there is a very clear demarcation between the large areas of red skin, and the areas of normal skin where I never used steroids (like my nose and part of my cheeks).

My face earlier this month, in the throes of what seems to be TSW. A red, dry, sometimes flaky rash covers everywhere I’ve ever used topical steroids. You can see that there is a very clear demarcation between the large areas of red skin, and the areas of normal skin where I never used steroids (like my nose and part of my cheeks).  My face looks like a globe showing a map of the world – the rash is the continents, and the normal skin is the sea!!! My eyes were also extremely puffy and nearly swollen shut.  Because the eyelids are so thin, they absorb more steroid than other parts of skin.  This is my theory as to why my eyes were so bad.  It is shiny under my nose because I had Vaseline on that area.

Same day as above, just a view of the other side of my face.  There's a very clearly outlined rashy patch on my cheek and you can still see my red, rashy neck in this picture.  I find it interesting how there will be portions of unaffected skin right next to red skin.

Same day as above, just a view of the other side of my face. There’s a very clearly outlined rashy patch on my cheek and you can still see my red, rashy neck in this picture. I find it interesting how there will be portions of unaffected skin right next to red skin. Again, the shine under my nose is from Vaseline, it was very dry and flaky there.

So right now after one month off steroids, I still look mostly like the above two pictures.  Those were taken about 2 weeks ago, and since then thankfully the redness has gone down a bit and is more blotchy than solid colored.  My neck has been looking noticeably better and is not so crazy red.  I will plan to post more pictures as I make more progress!

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30 Days Without Steroids

One month without using steroids!  Let me recap and just give a little bit of my brief steroid history, because if what I’m going through is TSW (and I think it is), I wasn’t a long-term nor hugely habitual steroid user, so my pattern of healing may be different (quicker?  I hope!) than some of the other personal accounts online.  In a following post I’m going to put up some pictures that will give a better visual demonstration of this.

I first remember being prescribed steroids around age 19-20 when I had some eyelid dermatitis/eczema.  I had always had somewhat sensitive skin and had eczema as a child on my limbs, but it was never treated with steroids at that time as it was moderate to mild.  I’m not sure what caused it, but it could have been a makeup allergy… anything really.  I was given Desonide compounded into a cream ‘safe’ to use around the eyes and I used it for probably a few weeks – my memory is fuzzy at this point.

The next few years I don’t remember very well, steroid-wise, but I wasn’t in too bad of shape as I don’t remember being hyper-focused on my skin’s state like I am now.  Somewhere along the way I must have had some itchy patches though, as I was introduced to Protopic (not a steroid in the sense of the others) and Mometasone. I used these here and there sporadically – I habitually had red, rashy skin under my nose, so I would sometimes use a dab of them here.  In retrospect, I think the red skin was probably from perioral dermatitis and using some lip product like chapsticks with beeswax.

In the winter of 2011-2012, I had an annoying patchy face rash going on.   I was getting very self-conscious and desperate to heal it.  I had used CeraVe cream to try and make it better and it seemed to only make it worse.  However, this could have been a case of trying so many things to try and heal my skin, as it had been slowly and insidiously spreading and getting rashy after starting with a tiny patch under my left eye that refused to resolve.  The insidiousness also began with me noticing my skin was getting very sensitive and I couldn’t use products I once used, like Aveeno moisturizers.  Around this time, I remember being prescribed a new cream, Elidel (which didn’t seem to do anything for me and was very expensive).

Over the following months, my rashes were in a state of flux, sometimes okay, sometimes not so okay.  Again in retrospect, this could have been linked to using products with aloe, as I found out I was allergic (or perhaps I was NOT initially allergic to aloe, but developed an allergy from using it over time).  I don’t believe that I really used steroids during this time, except for maybe a tiny bit here and there under my nose again.

Over last summer I started getting really fed up.  I had these patchy rashes on my face and no matter WHAT I did, they would not go away.  Sometimes they would improve and sometimes not, but they were stubborn bastards.  I was starting to avoid people so I wouldn’t have to look them in the eye and have them notice my rashes.  My legs were also starting to get rashy in late summer.  I wanted to wear shorts around people, but I was self-conscious about it.  In a fit of desperation one day, I put Mometasone all over them – and woke up the next day with clear skin.  Scary how well, yet how terribly these drugs work.   I think I repeated that cycle with putting Mometasone on my legs one other time.  I had also had a round itchy patch on my knee that wouldn’t heal, and I used Mometasone on that.  Strangely, it only got worse and larger (from about the size of a quarter to the size of maybe a pop can diameter).  Maybe that should have been my first clue.   In September I saw a naturopath and her remedy also made things worse – I had horrible puffy eyes and red skin.

This started a cycle where, although I wanted to avoid steroid creams,  I used Desonide on my face sporadically if things got really bad, as a last resort.  It did seem to improve things, but not too much.  I began seeing a holistic doctor, who thought the cause was my liver or thyroid and had me buy all kinds of supplements that did not end up helping and were a waste of money, in my opinion.

Then in November I had the whole aloe allergy thing.  The dermatologist took one look at me and prescribed Mometasone again, but this time to use on my face, and then Protopic to use once most of the rash had cleared up.  I used the Mometasone for about 4-5 days and then the Protopic sparingly.  Over the next few months, although I KNEW it was bad to use the Mometasone on my face, I did use it a handful of times – one time I had a random rash act up under my eye, and the most recent time my face got completely red and dry when I was sick with a cold and bronchitis.  I also started to have rashes crop up on my body, like on my stomach and back.  My legs looked wrecked all the time and I had given up on them.  I used a little bit of Mometasone to heal my body rashes and I thought maybe it really worked for good, but the rashes came right back after about a week of not using the cream.  The very last time I touched steroids was in January where I used Mometasone on my face for one day when I was sick and I got very red and dry.

Pretty much just a few days after using the Mometasone for the last time, my skin got even worse (this was last month).  This was also the time that i started the Candida Diet in another attempt to heal myself as it made sense to me that I might have Candida (had used antibiotics and birth control in the past, both contributors).  The first/second day of the Candida Diet (where I was eating only vegetables and broth), my face got even redder and my eyes were puffy.  This seemed to either be a ‘rebound reaction’ from using then stopping the steroid, or some kind of detoxing from the Candida diet, or both.  I read a very interesting post the other day from Eczemancipated re: diet and RSS/TSW which may have explained what happened to me.  I had done the Candida diet for about three weeks and didn’t notice any skin improvement (in fact, worsening), although I FELT really good internally, albeit sometimes deprived and hungry.  Diet-wise, because I didn’t see any improvement and because now I recently am under the stressful change of living with my parents and undergoing separation with my husband, I kind of scrapped the true Candida diet.  I can’t cook as many special foods when I’m sharing a small kitchen and fridge with my parents, and the stress caused me to turn to comfort foods like toast and cookies because the stability of my living situation got abruptly uprooted.   I also felt that being a stickler for the diet might have been causing more stress than it was worth in the face of having lots of stress already.   Sure, I probably should have stuck it out for longer to see what happens, but I still AM taking the supplements, like probiotics, eating lots of fresh vegetables, eating minimally processed foods for the most part, trying to avoid sugar and fake sugar for the most part, and still avoiding fruit, dairy, chocolate, and nuts.  Avoiding gluten didn’t seem to make a difference in my skin, so now I do have some toast or crackers every day, but I don’t go crazy with gluten and eat it at every meal.

So.  Now that it has been a month, how am I doing?

  • RED.  My face and neck are still about as red as ever, but the redness SEEMS to very slowly be fading.  It’s more blotchy than all one color, which seems promising.  It’s not as prominent as it was a few weeks ago.  I still have to wear concealer if I want to look normal, as I’m scary looking otherwise, but thankfully it seems to be improving.
  • ITCHY.  For the most part, I’m itchy most of the time, but it isn’t something that is completely uncontrollable, and I can usually distract myself, like if I’m at work.  However, a few nights ago I had a huge horrible itching attack where my face and neck began to itch.  My face and neck always seems to get somewhat itchy in the evenings, just after the duration of the day and probably getting dry.  Knowing what would happen (an inevitable itch cycle), I itched just a little bit and hoped that would settle things down.  I should know better ’cause it never works.  An uncontrollable itch began to start and spread all over my face and neck.  After trying to ignore it for about the longest 30 seconds ever, I hightailed it to my bedroom, shut the door, and began the blessed relief yet curse of  mercilessly itching my face and neck.  I keep my fingernails short so I didn’t do much damage, but it was like the itch to end all itches.  I thought it would never stop.  I was entering the horrible itch realm.  The realm of begging, pleading, “PLEASE GOD MAKE IT STOP”.  What does it feel like to be a person that doesn’t itch?  Or one that can just itch a single spot normally, and then be done?  I haven’t known that feeling for years and feel like I’ll never know.
  • OOZY.  Some people with TSW wake up in a state of ooze.  They are exuding crazy amounts of liquid.  I didn’t use steroids long-term, so thankfully I don’t wake up soaked or anything, but I did have a few spots that did this.  I had a random itchy oozy patch on my upper leg near the groin, and then my earlobes (which have been very flaky and dry for months) will sometimes ooze and crust at night.  Nothing huge though thankfully.
  • DRY.  I felt like my skin would never make its own moisture again over the past few weeks.  It was so dry that even slathering it with olive oil and then putting Vaseline on top didn’t completely help things.  I got gleefully excited the other day when I finally had a small pimple, as this meant my skin seemed to finally be manufacturing oil.  I sometimes feel like I should use NOTHING on my face at night and let it try to learn to ‘make its own moisture’, if you will, but it gets too dry and uncomfortable to use nothing.  I seem to be very, very slowly getting better regarding dry skin, but by the end of the day, my face is tight and uncomfortable – around my eyes especially, which is very annoying as I constantly feel like they are puffy and half-closed, because the skin on my eyelids is so tight.  It prevents me from making full facial expressions or genuinely smiling if it’s really bad.   If I look closely by the end of the day, the upper layer of skin has become flaky (notably in the places I used steroids most – around the eyes and around my mouth), and I can go through a cycle of peeling off these flakes which then repeats itself the next day – moisturize, dry/tight, flake and peel, repeat.  After I moisturize, my skin FEELS soft to the touch, but still looks red.  This is encouraging to me as it wasn’t always soft to the touch!
  • SKIN SMELL.  I mentioned my skin had a weird smell in a previous post, kind of like wet paint, but very faint.  The oozy parts did have this smell, but it seems to be dissipating.  Healthy color also seems to be coming slowly back into my skin, notably my legs.
  • PUFFY EYES.  When I started the Candida diet around a month ago, I would frequently wake up with puffy eyes.  I had to get up earlier than normal to put ice on them before work.  Although I still wake up with *somewhat* puffy eyes, they are overall better in that respect and I haven’t had to ice them for a few days.  I’m also hoping that after all of this nonsense heals, my eyes will have their Dennie-Morgan lines fade and become less prominent.  (These are lines under the eyes, also called ‘atopic pleats’, that are markers of allergies and dermatitis.  Other people might not notice them, especially if they aren’t right up close in my face, but I feel like they make me look older and more tired, hence I get self-conscious of them.  I always HAD them very faintly since I was a kid, but they got more noticeable when my eczema got worse.)
  • MISCELLANEOUS.  Other bloggers have talked about non-skin symptoms like sweating, temperature regulation, and hair loss.  For whatever reason, my eyelashes seem to be getting more sparse and less lush.  With body temperature, it’s not anything drastic, but I’ll have sporadic days where I feel warm and cold at the same time, or instances where I just can’t seem to warm up.  It IS February in the midwest, so the near-zero wind chills have not been helping.
  • BODY RASHES.  My legs, stomach, and lower back seem to be slowly getting better.  A few weeks ago they had widespread scattered rashes, which have now scabbed up/dried up and seem to be slowly, slowly healing.  They are also not as itchy, even though it’s still tempting for me to itch and pick at them.  My elbow creases, shoulder area, and wrists all have rashes too, but these also don’t seem to be getting any worse – they’re unsightly (I have sometimes even been using a little bit of concealer on the backs of my hands at work so the rashes aren’t as noticeable), but seem to very, very slowly be drying up and scabbing off.  Sometimes the dryness is very painful and feels like a sunburn.  I was limping the other day because the area behind my knee was hurting when I bend it, or it will hurt to bend my arms because of the dry rash in my elbow creases.  I know I could go through another flare with the cycles of TSW, but I remain optimistic that a few more months of healing will bring me right into spring and summer and by then I’ll be able to wear mostly whatever I want again… I HOPE!  😀

 

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The Exodus, and TSW Symptom Checklist

THE EXODUS

An EXODUS is defined as a going out or a departure, usually of a large group of people (i.e., a “mass exodus”).  Today, I had an exodus.  What happened exactly was this.  In the throes of all my marital difficulties, I decided I was going to secretly move out and not say anything to my husband, and do this at a time he was gone so that he wouldn’t know.  Let him worry, let him figure out why I didn’t come home.  Let him get lonely when he has to get into an empty bed.  He’s probably going to figure out that I’m now living at my parents’ house temporarily, but it gave me a sense of control to plan this behind his back, I was actually kind of gleeful about having a secret.

The perfect opportunity presented itself this afternoon when he went to go to dinner with his parents – I sprang into action, hurriedly throwing food into bags, clothing into a hamper, and all my many toiletries into a crate.  Before I drove hell-bent over to my parents’ house, I gave him the kind parting gift of washing the bedding and changing the sheets.  I really don’t know if I truly have RSS/TSW or not, but my skin has been crazy shedding over the past few weeks.  We have dark colored sheets, so I can see every bit of skin that’s been scratched or rubbed off during the night.  I’m like the Human Dandruff Maker.  Although a vindictive part of me wanted to leave the sheets, skin flakes and all, I decided to be the bigger person and not do that.  Bits of dead skin all over the place are probably not what I want him to remember me by!

WHAT GOES AROUND

Earlier that day, I was at the gym and listening to a mix of songs, when on comes Justin Timberlake’s “What Goes Around”.  I nearly stopped short on the treadmill…. what a perfect song for my current situation with my husband.  (Lyrics slightly edited).

Hey boy, you were everything I want in a man
You know I gave you the world
You had me in the palm of your hand
So why your love went away
I just can’t seem to understand
Thought it was me and you babe
Me and you until the end
But I guess I was wrong

Don’t want to think about it
Don’t want to talk about it
I’m just so sick about it
Can’t believe it’s ending this way
Just so confused about it
Feeling the blues about it
I just can’t do without ya
Tell me is this fair?

Is this the way it’s really going down?
Is this how we say goodbye?
Should’ve known better when you came around
That you were gonna make me cry
It’s breaking my heart to watch you run around
‘Cause I think that you’re living a lie
That’s okay baby ’cause in time you will find…

What goes around, goes around, goes around
Comes all the way back around

Now boy, I remember everything that you claimed
You said you wanted to move on now
And maybe I should do the same
Funny thing about that is
We made a promise and I took your last name
Thought it was me and you, babe
And now, it’s all just a shame
And I guess I was wrong

Don’t want to think about it
Don’t want to talk about it
I’m just so sick about it
Can’t believe it’s ending this way
Just so confused about it
Feeling the blues about it
I just can’t do without ya
Can you tell me is this fair?

Is this the way it’s really going down?
Is this how we say goodbye?
Should’ve known better when you came around
That you were going to make me cry
Now it’s breaking my heart to watch you run around
‘Cause I think that you’re living a lie
That’s okay baby ’cause in time you will find

What goes around, goes around, goes around
Comes all the way back around
TSW SYMPTOM CHECKLIST

Now!  It’s time to stop my whining about marital difficulties and get back to eczema.  I’m actually really curious if my eczema will get better while living at my parents’ house, since it only got worse about a year after I got married, and I really NEVER had any significant eczema issues while I lived at home.  If it does get radically better, I can either blame stress or some environmental pollutant in the home I shared with my husband (we do live by a really suspect plot of land where toxic chemicals were dumped…. hmmm).

Anyway, I was on the ITSAN site looking at common symptoms of steroid withdrawal.  Here they are directly from the site.  I will comment after each symptom on my own experience.

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.  I don’t really seem to have this – I’ve seen the ‘red sleeves’ pictures of people who have it very badly.  I DO have areas that are red and burn, but they are not large areas.
  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.  Well, the very nature of eczema is that you’re always itchy.  But, I’ve read this itch is crazy bad.  People will be on their knees begging it to stop.  I can distract myself from itching if I’m doing something with my hands like typing or working.  My itch is no more intense than the constant itch of eczema.
  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.  I DO have this, hence the mention above of being the ‘human dandruff maker’.  Also, I’ve been experiencing peeling skin around my eyes, under my nose, and under my lip.  This skin will gradually get very dry and tight as the day goes on (no matter how I moisturize) and will be ready to peel by evening.  Using Vaseline actually helps the peels of skin come off better, so I use that at night (not during the day tho, too greasy and shiny).
  1. Edema. Swollen skin; swollen body parts containing fluid. Hands often swell during TSW.  Nah, no swollen skin.  Then again though, I didn’t use steroids for very long periods or use high-strength steroids.  It makes sense that I wouldn’t have all these symptoms.
  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.  I DID have some ooze/crust under my nose for a few days.  I know, gross.  What a blog, I’ve talked about skin flakes and now oozing.  What’s next, my bowel habits?  They’re great, in case you’re wondering, haha.  The candida diet works magic on keeping people regular and feeling sleek and un-bloated.
  1. Itchy skin. The itch is unbelievably intense and feels like it originates under the skin.  Hmmm, ITSAN already mentioned this one.  I guess they REALLY wanted to emphasize it.
  1. Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch.  I DO have this, especially in my elbow creases.  It’s very red and shiny and it just hurts and is uncomfortable, even though I’m not picking at it or itching it.  It’s also painful and raw behind my knees and can make walking uncomfortable at its worst.
  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 think this is a yes too.  The places that I used topical steroids THE MOST were on my face, and then on my wrists/elbow creases/shoulders, and behind my knees.  Now I have rashes on my neck, stomach, and lower back, and my legs.  I also have very very dry skin.  My skin had kind of an unhealthy color (notably on my legs), but the healthy color seems to be coming back amidst the existing rashes.  I noticed this over the past few weeks.  I don’t know where to mention this but my skin has also had a very faint yet odd smell for a long time – probably noticed it around the time I started this blog and my eczema was getting worse, like September.  I thought it smelled a little like wet paint, but someone else mentioned a ‘skin smell’ on their blog (I think it might have been Pink Like a Beacon’s blog) and so that makes me think it’s connected to RSS/TSW. 
  1. Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills.  Kind of, yes.  I was always cold this past winter (I don’t know why I’m talking about winter in the past tense, as it’s still here and I still get cold).  My feet are always freezing in bed, so I developed the habit of putting towels in the dryer and then putting them around my feet in bed.
  1. Exhaustion.  Ehh, I don’t know about this one.  I wrote a post about being tired, but I got better with that and I don’t think I’m any more tired than the average person. 
  1. Insomnia or difficulty maintaining a normal sleep schedule.  See above.  I never have trouble getting to sleep, I used to have trouble getting going in the morning, but that got better too.
  1. Loss of appetite.   Nooooo.  Today I ate a whole box of cookies, for example.  They WERE allergy-free special Whole Foods cookies, but I guess that doesn’t make me any less of a glutton.  Following the candida diet has not been so diligent on my part in the past few days, can you tell??
  1. Very, very dry skin that has the look and feel of plastic.  I do have ‘shiny’ very dry parts of skin, like above my eyes and under my nose.

Anyway…. I hope everyone is having a great weekend!

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Three Terrible Trials

This is a quick update on the progress of my skin and life in general over the past few weeks.  I’m an optimistic person, so I’m not sitting at my computer downcast crying salty tears into the keyboard and messing up all the internal electronics, but things have not been easy.  Here are the three trials I have been dealing with:

1. POSSIBILITY OF TOPICAL STEROID ADDICTION, aka red skin syndrome (RSS). 

Multiple helpful bloggers have commented on my blog that my history and current rash/dermatitis sounds awfully like it is RSS.  I had read about RSS before, but was reluctant to believe that I could have it, as I didn’t have any of the symptoms like stabbing pain, uncontrollable itching, burning, weeping, oozing, etc.  I also had never used steroids long-term, but did use them sparingly over the course of a couple years.  However, what I DID and DO have is a rash that would not clear up, spread insidiously, and for the most part is ONLY in the places where I’ve ever used steroids.  And, I also CANNOT link it to anything concrete like diet, environment, etc., even though I’ve been trying for a good year or more.  Oh yeah, and it always came back worse after I used steroids, even though it would take 7-10 days.  The very last time that I used steroids (and the last time I intend on ever using them) was a few weeks ago when my face flared up like crazy along with having a cold and then bronchitis.  Now I know that the crazy rashtastic rash on my body, and my face, was probably a rebound reaction after using steroids.

The past 2-3 weeks or so have been hell for my skin, especially my face.  I’ve wanted to use steroids so bad, but I know that I’m taking steps toward healing by not using them.  All last week and the week before, the skin on my face was ridiculously dry and red, and around my eyes would become so tight that I would be very uncomfortable as the day progressed.  I’m happy to note that I appear to be entering a healing phase and look/feel much more normal.  I’ve left so many flakes of skin in the bed and all over the house, but when it peels off, the skin underneath is closer to being healed.  I’m certainly not totally healed (my hands and elbow creases are wrecked, for example… did I use steroids on these areas in the past?  you bet), but I’m confident in my body’s ability to heal, given time.    I’m also hoping that because I did not use steroids long term, the healing phase from them will be quick and maybe I can look reasonably clear-skinned again in a few months by summer.

2. CANDIDA DIET

Yes, I’m still on the candida diet, albeit a slightly looser version.  I still have not had any caffeine, soy, dairy, gluten, or… hmm, I am probably forgetting something else.  Today is day 18 and I’ve mostly gotten over the sugar cravings and feeling of deprivation.  I have entered the stage where I completely feel as though I could adopt this diet for life if need be.  I started to ‘cheat’ a bit a few days here and there (nothing big – I had a few foods with minimal added sugar, like sunflower seed butter, Rice Chex, and organic chicken sausage), but it didn’t seem to affect me.  I also started eating some corn, i.e. corn chips and Corn Chex, as well as beans (which you are not supposed to introduce until stage 3 when you see noticeable improvement).  So my current approach is the Mostly-Candida-Diet.  I’m honestly afraid to have something outright sugary like a dessert, as I feel like it would cause havoc.  However, if I really do have RSS/topical steroid addiction, diet may not play a big role in what bothers my skin.  I guess the Candida Diet isn’t that terrible of a trial, but in the throes of a food craving, it isn’t very fun.

3. RELATIONSHIP TURMOIL.

I wrote about this in a previous post – the current strain on my relationship with my husband.   So even though we’ve talked and discussed and been respectful of each other’s feelings, my husband is truly, totally convinced that we need to separate/divorce and that “I’ll thank him later”.  WTF?!?  Does he picture that I’m going to rush up to him a year from now and be like, “Oh, thank you, thank you!  You broke my heart, I’m so grateful for that!?”  I’ve written him a lot of angry/sad/spiteful emails to him over the past few days as I just don’t understand his reasoning behind wanting to leave someone that has been a devoted and loving companion for the past TEN YEARS (we started dating when I was 17! and have been married for almost 3 years), even though he insists that he’ll always love and care about me and that we can still be friends.   One of his most hurtful and selfish statements was that he wanted to separate so he can start fresh and have a family, and that he wanted to spend time being single.  So basically this implies, “I want children, just not with YOU” and “I want to run around and not be committed to anyone”.  I’m not the biggest child-wanting person, but I was absolutely willing to sacrifice and compromise so we could have a family together.  The threat of knowing he wants to leave me makes me want that even more strongly – I don’t want to be set adrift alone in the world and have to find someone else to love.  I’m not here to rant about my husband, or someday ex-husband (ugh, I hate writing/seeing that phrase, it seems so sad – imagining me being a divorcee’ at the tender age of 26 😦 ), but this, as you can imagine, has been a huge source of stress and turmoil.  It’s particularly awkward as we still live in the same house, but I don’t even want to talk to him as it’s the same repeated thing, he’s convinced we’ll be better off.  I can’t move out yet because I’m still going to school, but if things get really bad, I’ll move back in with my parents.  I still pray that it could work out, and I believe it could.  He is absolutely convinced otherwise.  I’m not going to cling to a sinking ship, so I just have been praying for God’s guidance and peace and hoping whatever’s out there in my future will more than make up for all the anguish so far.

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How Eczema Hurts Marriages

couple-breaks-up1

I was eating dinner the other day, picking at my bland millet and disgusting chicken breast (getting acclimated to eating meat regularly is the hardest part of the Candida Diet for me, I was used to getting my protein from plant sources) when in comes my husband.  My beautiful husband, with his smooth skin and athletic good looks, like the kind of guy you see on the Abercrombie shopping bags.  We’re an ill-matched looking pair right now; let me tell you – Mr. Handsome and Ms. Rashy Little Red Lobster.

Fixing me with a serious look, I could tell immediately that something was on his mind.  After almost 10 years of being together, I know his ways so well that I could tell this exact look meant he was about to say something very serious, yet something that I wouldn’t want to hear.

He opens, “I’ve been having some stupid thoughts lately…”  What are they, I probe.  “I don’t know”, he says, which is My-Husband-Speak for saying that he knows all too well but doesn’t want to come right out and say them.  My mind immediately, yet surprisingly calmly jumps to the worst-case scenario.  He’s leaving me!  He found another woman…one who’s beautiful all the time and not afflicted with eczema.

Through careful conversation and encouraging him that I want to hear what’s on his mind, no matter how bad or hurtful it might be, the truth comes out:

The winter is getting him down.  It’s very depressing.  I talk about moving south to a warmer climate all the time and he doesn’t want to hold me back.  Maybe I should just do that if I want to, without him.  Our routine has become stale.  Get up, go to work, come home, and spend the weekends just getting by from surviving the hectic work-week.  Every day is the same.  We need a radical change.  The most radical change he can think of is separation.  That’s right, going our separate ways.  Not that he wants to do that, but he thinks about it sometimes.  We have all these separate neuroses and we’re so closely linked that they are rubbing off on each other.  If we parted, he would always love me and be my best friend, and we could talk whenever we wanted, but life is a funny thing.  It’s not like he’s found another woman, but maybe we’re ill-suited together.  Please don’t hate me for saying these things, he says.

By this time I have grabbed the nearest Kleenex and filled a good half-dozen of them with anguished tears and sniffles.  In a twisted way, it feels good to cry and be sad.  I’ve felt numb for so long that I actually welcome these despondent emotions.  But even though I kind of suspected he was going to say something like this, hearing it in the open still hurts terribly.  I understand, I say.  I know you had to be thinking these things.  You’ve become secretive when you’re on the phone and I KNOW you’re talking to your [male] friend about us and our relationship or maybe lack thereof.  I can’t stand that you’re married to someone with a seemingly uncontrollable disease that’s taken over her whole life and stealing all her confidence.  I hate that we haven’t had any intimate contact in months because of my very un-sexy eczema having me in a constant funk.  You’re too good to let my chronic condition drag you down.  I hate that you might want to split, because I love you more than anything in the world – I would give everything for you and die for you in an instant – but if you feel you have to go, I understand.

We sit there for a while, tears falling silently (by this time even he is getting misty-eyed), as I let that sink in and ponder the magnitude of what’s just been said.  “Wait a minute honey.  Where would we go – live back with our parents??” I ask.  We start chuckling through tears a bit, realizing just how ludicrous it would be to split up.  As we talked more later that night and again the next day, I grasped further the concept that we truly are so tied together that we experience almost everything jointly, the good and the bad.  They really did mean “in sickness and in health” when we recited our marriage vows; not just staying together with the person during those times, but deeply feeling their own pain, ambivalence, or joy.  When he had his own demons with devastating anxiety, sleepless nights, and panic attacks, I stood by, feeling helpless and depressed myself.  Now that I’m battling the demon of eczema with no seeming light at the end of the tunnel, he’s feeling the same way.

Are my husband and I really going to split up –I pray that we never would.  The conversation between us wasn’t meant to be a reality, but to bring these issues out in the open with the hopes that hearing and acknowledging them will help us on our path to healing.  I’m a strong enough person independently that it wouldn’t frighten me to be without a partner, but I don’t want to have to face the world with just myself and my own introverted, eczema-riddled neuroses.

I can’t help but think that we would never have had this conversation without my eczema, though.  I’ve tried not to buy into its selfish ways, like a needy child demanding “Look at me!  Itch me!  Pay attention to me!”  I’m not writing this post for sympathy, or relationship advice, or even attention.   This post isn’t even unique to eczema – it could be written from the perspective of someone with ANY chronic illness or condition – lupus, depression, cancer, fibromyalgia, etc.  I just wanted to get it out there that eczema and other chronic conditions can not only hurt your body, your psyche, your confidence, but the relationships with the very people that you need by your side to help you get through them.

 

 

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Candida Diet, Day 10: Is This Right For Me?

As of today, I am on the 10th day of the Candida Diet.  I started the Probiotics last week, and 7 days later (last night) I started taking 2 antifungals (oil of oregano and caprylic acid).  Heavy doubt is starting to be cast into my mind if this Candida diet was the right thing to do.   Clearly, if it in fact IS Candida, I didn’t develop it overnight, and it’s not going to clear overnight – I understand this.  I also know that I need to give the antifungals a chance since I just started taking them.  So, I know it’s only been 10 days, but here are some reasons:

  • My skin has not gotten any better, and in fact has gotten markedly worse.  For example, before I started the diet, I was able to wear short sleeves with little problem – my arms were quite free from eczema.  Now I have huge rashes in the crease of each elbow, rashes on my wrists, and tiny rashes scattered on my forearms and tricep area.  There is a rash stretching around my neck like two angry red hands grabbed me in a violent strangling attempt (maybe I’ll post pictures later).  I look like a domestic violence victim, which is probably why people at work were giving my neck weird looks.  The rashes on my legs are as persistent as ever, and the rash on my stomach and hipbone area (the one that I posted a picture of here) seems permanently here to stay.  I don’t know if this is just horrible die-off reaction and I was riddled with Candida and this is a good sign, or what.  I refuse to use steroids because there is also the thought in my mind that this is a ‘rebound’ reaction to having previously used steroids, or even a mild case of topical steroid withdrawal.
  • I am losing weight, and I don’t NEED to lose weight.  I feel completely awkward and weird saying this, since many people struggle with their weight, but at 5’9″ and being down to 130, my husband is starting to complain that I look “too thin” and “not healthy”.  I have an athletic build and normally hover more around 135 to 140.   The average model is 5’10” and 115 pounds, which is unbelievably thin, and inconceivable that someone like me would still be “too heavy” to walk the runway, rashes or not (Shaking my head at American media and their unrealistic ideas of beauty).
  • Speaking of my husband, this diet is putting a strain on our marriage (a separate post on this to come later).  My husband has expressed dozens of times that “this diet is stupid”, complains that my restrictive eating habits are affecting him as well (since I can’t eat anything from restaurants), and oh yes, constantly tells me that “I need to eat something”.  He also thinks that I’m not consuming enough fat which is drying out my skin.  Although I HAVE been eating foods with good fats like olive oil, plain grilled salmon, and pumpkin seeds, there could be something to this statement, I’m not sure.   His statements frankly hurt my feelings and provoked me to willingly cheat on the diet last night – the first time I’ve broken it – trying to find the highest-fat, vegan food I could locate in our cupboard, which happened to be a jar of natural peanut butter.  Three huge spoonfuls never tasted so good, but now I’m back on track.  I was worried I might react to it, but I didn’t seem to wake up any worse.
  • I am starting to crave foods that I never even craved before.  This diet allows no sugar (except stevia as a natural sweetener).  I’ve had a mad hankering for cupcakes the past few days, and I don’t even normally LIKE cake.  I feel like when I go off this diet, I’ll turn into a binge-eating monster, which also is not healthy.  I’m hungry a lot of the time, and even though I am trying to pack in as many calories as I can, they are all coming from gluten-free grains, vegetables, and proteins like seeds, chicken, and salmon – I may well not be getting enough.

I DID have the miscellaneous thought that maybe I am allergic/sensitive to eggs, as I have been eating them almost every day on this diet.  However, I did a ‘trial run’ weeks earlier where I abstained from eggs for a while, then ate about 6 in a 24 hour span, and saw no ill effects.

Basically, I feel very trapped.  I’ve been praying for a sign that I’m doing the right thing, and I haven’t seen one yet, LOL.  I’m scared that if I go off the diet and start to eat the “forbidden” foods again, my skin could go absolutely haywire.

But, because it’s important to see the positives in things, here are the good things about the Candida diet.

  • I’ve developed an appreciation for gluten-free grains like quinoa, millet, amaranth, and buckwheat.
  • I’ve developed an insane sense of self-control when it comes to food.

If anyone out there has further experience with the candida diet, please weigh in!  Am I likely to get better if I keep sticking it out??

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