Category Archives: Miscellaneous

Asthma Medication Rant

Like many other ‘eczema’ sufferers/atopic individuals out there, I also have asthma and have had it since childhood.  My asthma is very well controlled with the help of the wonderful pill Singulair.  I almost never have to use my rescue inhaler and my daily activities aren’t limited – I can generally do high intensity exercise with no trouble breathing.

Singulair used to only be available in a brand name form, but recently (within in the past year), drug companies have been given the green light to go ahead and produce this medication in a generic form, with the same active ingredient, montelukast sodium.

This past fall, I received the generic and when I tried it, my eczema got worse and I got puffy eyes.  When I stopped taking the medication, these effects went away.  I don’t think this was just a fluke because I then tried it again and got the same results.

At the time, I filed a claim with the FDA and also called the drug manufacturer to get a list of the ingredients.

This is what is in generic montelukast sodium tablets:

Each 10 mg film-coated montelukast sodium tablet contains the following inactive ingredients: hydroxypropyl cellulose, hypromellose, iron oxide red, iron oxide yellow, lactose monohydrate (128.6 mg), magnesium stearate, pregelatinized starch, sodium lauryl sulfate, sodium starch glycolate, and titanium dioxide.

Basically mostly a bunch of colors and fillers, but the one thing that worries me is seeing Sodium Lauryl Sulfate, or SLS, in the list.  According to the Environmental Working Group, SLS is suspected to be an environmental toxin and has strong evidence of being a human irritant.  I don’t have the focus to get all science-y in my blog like one of my overseas TSW buddies, Miss Kitty Fantastico, although I’m sure this subject is just begging for some graphs and diagrams, but hell, let’s briefly give you a bit more evidence why this SLS stuff probably sucks for all of us.

Let me present a few studies to you where healthy controls were compared with atopic controls being exposed to SLS.  Atopic folks were found to have a statistically significant response with irritant dermatitis.  Here is another article that is pretty comprehensive and cites other scientific research.

So, okay, these types of studies are all over the place, we know that SLS isn’t the greatest thing to be using in our products like shampoos and hand soaps, ESPECIALLY if we have a compromised skin barrier due to eczema or contact dermatitis.

But if I’m actually ingesting this stuff, how does that bode for me?  I find it very ironic that, on the Material Safety Data Sheet for SLS, it says, “Hazardous in case of ingestion.”  Then we read under the Toxicological Information, in part:

Special Remarks on other Toxic Effects on Humans:
Acute Potential Health Effects: Skin: Causes mild to moderate skin irritation. May cause allergic reaction (dermatitis) Eyes:
Causes moderate eye irritation. Inhalation: Material is irritating to mucous membranes and upper respiratory tract. May cause
allergic respiratory reaction. Ingestion: Causes gastrointestinal tract irritation with nausea, vomiting, hypermotility, diarrhea,
and bloating. May also affect behavior (ataxia, somnolence), and cardiovascular system. Chronic Potential Health Effects:
Skin: Prolonged or repeated skin contact may cause allergic dermatitis. Ingestion: Prolonged or repeated ingestion may affect the liver. Inhalation: Prolonged or repeated inhalation may cause allergic respiratory reaction (asthma).
Oh great!  Nausea, vomiting, diarrhea, and bloating?  Not my idea of a fun evening.  Maybe I should be glad I *only* had puffy eyes and rash.  And does anyone else find it ironic that in the last sentence it mentions this chemical may cause asthma, but it’s an ingredient in the very medication used to TREAT asthma??  No wonder you can find accounts all over the internet of people that took the generic Singulair and had their asthma actually get worse.  Do I believe everything I read on the internet…. no, but one can certainly see why lots of people might be reacting to this medication.
My insurance recently told me the lovely decision that “We no longer will cover brand-name Singulair because of the cheaper generic version available.”  After spending enough time on the phone to grow a couple gray hairs and insisting to every customer service rep and pharmacist that the brand name is medically necessary for me and that my doctor is aware it’s a drug that needs to be D.A.W. (dispensed as written – meaning, Don’t give me the generic stuff, this girl needs the real thing), the only thing I can do now is file a letter of appeal to the healthcare company.
If the letter of appeal has no effect, I have two choices.  I can pay out of pocket for brand-name Singulair, which by my calculation, is over $3.00 for a pill PER DAY.  At this rate I could be forced into poverty, but boy, will my lungs be clear and healthy, which will bode well for me when I become homeless and have to live under a bridge on the freeway and be subjected to repeated onslaughts of car exhaust.  [Please keep in mind this post is written slightly tongue-in-cheek, so don’t feel like I’m a charity case with a “poor me” attitude… I’m not 🙂 ].  My other choice is to simply stop taking ANY pill form of asthma medication and just rely on my inhaler if I need it.
I’m of the mindset “If it ain’t broke, why fix it”, and being that I’ve taken brand name Singulair for nearly 10 years, I’m naturally suspicious of what could happen if I cease taking it.  Now back relating to TSW, I have read some hopeful things on the forums and such about people whose asthma got MUCH better once they healed from their steroid usage.  I believe this is perfectly credible.  I saw my own suspected food ‘sensitivities’ and seasonal allergies completely disappear now that I’m healing nicely from TSW.  However, I had asthma well before using any sort of topical steroids, so for me personally, I feel like they are not intertwined, but who knows.  Maybe the only way to tell is to do a test for a week or more where I take ZERO asthma pills, and then go back to the Singulair while I still have the buffer of about a month’s supply left, which is likely what I’ll do.
I’d love to hear anyone else weigh in if you’ve reacted to generic montelukast as well, if you’ve also experienced the hassle of trying to get insurance coverage for Singulair, or if you just have any thoughts or recommendations on this situation in general!
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5 Months Down… What’s Next?

As of Sunday I passed the 5 month milestone and I am now officially in the 6th month.  I have been battling (and winning!) with TSW for all of 2013, but I do not think it will continue into 2014!

I don’t know if other people do this, but sometimes I think about how we have especially “good years” and especially “bad years”.  I vividly remember in 2009 I had a really good year.  Among other things, I got into a nice higher-paying role at work, I walked the runway as a model in a fashion show, my brother got married and his wedding day was so much fun, and then I got proposed to, and all the excitement that comes with anticipating a wedding and future in love.

2013, being that it’s half over, will go down in history thus far as a pretty abysmal year.  School stress, work stress, TSW, and divorce plus all the things that come with it, like losing your home and your in-law family.  But can I just say?  DIVORCE SUCKS, HUGE!  Being lied to and betrayed by someone that held my heart for 10 years is actually worse than TSW, I think.  My skin is healing.  I think it’s only going to take me a year or less.  But in 2014 and onward, will my heart be healed?  I no longer talk much about my divorce on this blog since it’s mainly just for TSW and eczema.  I thought about starting a whole separate blog for working through all the issues of my divorce, but I didn’t want the extra work of another blog, and I ultimately decided I didn’t want my most fragile emotions and feelings vulnerably displayed to the public.  Anyway, before I get back to talking about skin – for anyone going through your own personal difficult times, if you’re reading this, we just have to convince ourselves we are stronger than we know.  Everyone who’s “been there” keeps telling us it will get better, and we have so much trouble believing that.  Will it ever get better?  Will we ever feel healed and whole again?  When it feels hopeless, we have to keep the faith that yes, it will get better.  Many days I don’t believe it myself, but seeing my skin heal has been a good metaphor.  If my outside can heal and I thought it never would, I suppose my shattered heart and soul must be able to do the same.

“We either make ourselves miserable or make ourselves strong.  The amount of work is the same.”  – Carlos Castaneda

So yes, I HAVE been working on making myself strong again.  I turn to God an incredible amount, I’m doing a lot of workouts for physical strength, I’m creating artwork which is incredibly therapeutic, and I’m reading empowering books like there’s no tomorrow.  🙂

To the skin updates, with pictures…

Here is my left arm, looking pretty normal and almost healed.

Here is my left arm, looking pretty normal and almost healed.  I would be fine with wearing short sleeves and revealing this arm.

Here is my right arm, full of scabs, looking like I'm a drug addict.  (Well I guess actually I WAS, though topical steroids aren't usually considered on par with injecting heroin.)

Here is my right arm, full of scabs and red, looking like I’m a drug addict. (Well I guess technically I WAS, though topical steroids aren’t usually considered on par with injecting heroin.)  This is what keeps me from wearing short sleeves to work or around people.

 

 

 

 

 

 

 

 

 

 

 

But, the outstanding thing is that my arms and shoulders actually saw the light of the sun this weekend, for the first time in over half a year.  It was over 90 degrees here and I wanted to go outside and get some of that healing sun while I went for a run on a local public trail.  It would have been completely unreasonable to wear long sleeves, so I wore a tank top and figured, to heck with it.  And, I think the sun exposure really did help my skin a little.

I love being warm, so sweating it up running under the blazing sun didn’t bother me, but as I began to sweat, the backs of my knees began to itch wildly and I just HAD to stop and claw at them.  This was a little damaging:

DSC00814

Also went in the pool this weekend, which was another milestone.  I thought I would never be able to wear a bikini again due to all the rashes.  Now that my rashes are localized to just my limbs, I’m ok with it (plus the fact that no one saw me in my swimsuit except my mom, haha.  I’m not romping around bikini-clad in public just yet.).  I don’t know that I would recommend swimming in general for people with TSW.  The chlorine stung the cuts behind my knees and that area felt really dry later.  Then I kept experiencing a burning feeling in that area while I was trying to sleep at night.  If there are no open wounds, it could be okay as long as you rinse off and maybe use some moisturizer if you prefer.

Anyway – Happy healing everyone, hope you all are having a good week!

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Turning “No Ones” into “Someones”

We all engage in negative self-talk, but in my experience, this has become way more prominent during my TSW and divorce.  I’m cognizant that, even though now I have stable self-confidence again, I’ve been catching myself making a lot of mental “blanket statements” that can be really defeatist and depressing.  The good thing is that I’ve started recognizing them right away before they become my inner reality.  And there’s really no reason for my mind to keep making these statements.  If we take the real biggies of TSW and divorce out of the equation, life is good.  I have a lot of people that love and care about me, I have my health, I have a bright future ahead, and I have the faith in God that I have to be destined for some pretty amazing things.

It dawned on me last night that some of these generalizations running through my mind begin with “No one”, and if I just replace that “No one” with “Someone”, the statement becomes a whole lot more affirming and hopeful.  It’s no coincidence that statements starting with “No one” can start to make you FEEL like you’re nobody, but statements starting with “Someone” serve to remind that yes, you ARE someone – someone unique and talented and not like anyone else.

Let’s look at some of these types of extreme statements and see how much better they sound when I turn these “No ones” into “Someones”.

“No one understands what I’m going through.”  –> “SOMEONE understands what I’m going through.”

“No one grasps that my divorce was completely unfair and not my fault.”  –> “SOMEONE grasps that my divorce was completely unfair and not my fault.”

“No one is left in the world that is not evil, but truly kind and loving.”  –> “SOMEONE is left in the world that is not evil, but truly kind and loving.”

“No one will think I’m attractive and want to be in a relationship.”  –>  “SOMEONE will think I’m attractive and want to be in a relationship.”

“No one will fall in love with me again.”  –> “SOMEONE will fall in love with me again.”

I encountered the principle recently that the reality we make for ourselves doesn’t depend on the facts, but how we view them and react to them.  For example, if you’re going through TSW or a breakup or a move to a new place, or some other kind of life change where you’re forced to spend a lot of time alone – this is a fact.  You are spending time alone.  But is this a gift or a curse?  You can view this as “Everyone else has a ‘normal’ life, I’m all alone and this is awful.”  Or you can view it as, “Here I am alone, what a great opportunity to really take some much-needed time for my own hobbies and interests.”  One viewpoint is clearly going to emerge with a positive view on their reality!

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our Attitudes.”  – Charles R. Swindoll

The Itchy Germaphobe Takes A Trip

This week I happen to be a few states away at a professional event thingy.  What this means is that I’m staying in a hotel in an unfamiliar city away from my creature comforts of nice things like my bathtub, my bed, and all my various skin implements and creams.  Don’t get me wrong, even though my skin looked good in the pictures the other day, I still have a lot of rituals and there are still parts of me that are nowhere near healed.  My arms, shoulders, and upper back this week have continued to be itchy and scabby, and develop occasional pimply bumps that hurt and ooze clear fluid when they are poked.  My chest also has some bumps and scabs but not as pronounced.  I tried to take photos of these things but they didn’t really turn out.  I do remember hearing in the newest ITSAN video the other day that people who used TS on their eyelids will have the rash spread to their upper chest, which is interesting since this is exactly what happened to me (and I HAD used a decent amount of TS on my eyelids).

I hadn’t taken any sort of overnight trip in quite some time, let alone a trip with going through TSW, so this stay is making me realize how different I may well be from the “normal” person, coupled with my neuroticism over germs in public places…..

…I walk into my assigned hotel for the week, toting my suitcase, my backpack, a tote bag of snacks, another tote bag of toiletries, and my pillow.  I look like I’m running away from home for good, rather than staying a few nights.  But you never can tell with TSW.  I have no idea how I’m going to look or feel or how my skin is going to hold up with the stresses of being away from home, so I have a bunch of different outfits packed to ensure that I always have a few comfortable choices to pick from every day. 

Am I staying here all by myself?  You bet I am.  Even with perfect skin, I wouldn’t want to spend the night in a hotel with anyone but an immediate family member or my ex-husband (when we were married, that is).  With TSW, staying alone is a necessity.  I couldn’t fathom having to explain to someone why exactly I need to sit and soak in the bathtub for so long to decompress, why I take forever to get ready in the morning, why the night is still spent obsessing and peering and picking and trying not to scratch at my skin.  I’m having trouble sleeping in this strange place anyway.  I’m not sure if it’s the TSW, the stress of being out of my element a little bit, or the palpable reminder that now I really am alone.  This hotel room has a peculiar resemblance to the last one I stayed in, but that time it was with my husband back when I assumed we were happily married and would always stay so.  So taking up an entire bed by myself isn’t an indulgent luxury, but an eerie, unsettling loneliness.

I have brought my own pillow and pillowcase from home, as well as my own washcloths and face towels.  I have no idea what kind of harsh detergent the hotel uses, and I’m not about to find out the hard way by rubbing their linens on my face and winding up with some potentially worsening rash.  I don’t go so far as to bring my own full bath towels for the body, nor do I bring my own bedsheets, but I have entertained the thought of doing so if it didn’t take up even more space in my luggage.

The first thing I do when I set my stuff down in the room is to take a disinfecting wipe and swab down all commonly touched surfaces that might be harboring germs, like the toilet flush handle, the door handles, and the TV remote.  (About a half hour after I have done this, I realize there are other surfaces I missed, like the sink handle and a few light switches.  I briefly feel panicked and grossed out that I might have missed some germs, but I try not to think about it).

Speaking of germ surfaces, I am immediately annoyed to find out that this hotel has valet parking, and not only do they WANT you to use it, you MUST use it so that they can file your car away in the proper spot per their hotel protocol.  I am extremely particular about my car.  I regularly wipe down the steering wheel, shifter, etc., with a disinfecting wipe so that it’s always clean.  No one else is allowed to drive it because I don’t know what they’ve touched.  I just wiped it down for this trip, and now some valet is going to put his grimy paws all over my clean steering wheel.  My mind gets flustered at this thought and I make a mental note to immediately wipe ALL the car’s surfaces down again as soon as I get it back. 

My germaphobe neuroticism really takes a hit when it’s time to get ready for bed in the hotel.  Even as a little girl, I remember my mother telling me never to take a bath in a hotel room, that it was more sanitary to take a shower (because in a shower, only your feet are in contact with the tub floor, rather than your entire lower half with a bath).  I freeze at considering this quandry – Do I take a shower, which probably won’t be as good for my skin, since I have always taken baths with TSW – (I even brought a plastic container with my Dead Sea Salts) – or do I take a bath, and mentally deal with the fact that my legs, butt and hoo-ha are planted on the tub floor where probably thousands of people’s skeezy feet were?  I am momentarily rattled by this choice, even though the tub looks very clean and I am sure they must do some sort of sanitizing between guests, but I eventually resolve to take a bath and just not think too hard about it.

Of course I have other “rules” when I stay in a hotel room, TSW or not.  Bare feet must never touch the floor, hands must always be washed after coming in from outside or touching some surface that might not be clean, like the outside door handle.  Elevator buttons must not be pressed with bare hands – I either use my knee or the corner of my shirt.  And now that I’m writing all this, I realize I never sanitized my actual room card, and God knows how many germs are lurking on that.

I usually itch and pick at my skin more when I’m away from home, and I’m never sure if it’s due to the actual environment, or because of getting stressed out about all these potential germs.  So yes, I sound like a neurotic nut that wants to live in a little sterile bubble, and I’m okay with that.  This post is written for amusement value more than emphasizing how much I think about other people’s germs on a daily basis.  But then, today in my hotel room, my fears about germs came true in a very gross way.

See, I understand when you leave a hotel room and go out and about for the day, that they might come in and make your bed or give you some new towels.  But this is the first hotel I’ve stayed in where they start rearranging all my toiletries in the bathroom and some of my other personal effects.  The first evening I discovered this, I was a little bit unsettled, but I figured okay, fine.  If anything weird happens, like some of my panties go missing, I’ll be alarmed, but alright, this is their job to tidy up, it’s just a little beyond what I’m accustomed to.

But THEN today………

I opened my tub of Vaseline and I am so disgusted I’m not sure what to do.  SOMEONE took their finger and SWIPED IT THROUGH MY VASELINE.   I KNOW this isn’t from me because I’ve never, ever been in the habit of digging my finger through Vaseline.  I delicately take a little bit off the top and don’t make a giant frigging track in the stuff.

But I don’t even know if I feel like complaining to the front desk.  It seems so ludicrous to haul a $3.00 tub of Vaseline down to the desk and make a stink about how someone violated it.

The bigger question is – if someone manhandled my Vaseline…. WHAT ELSE IN MY ROOM HAVE THEY TOUCHED?  I guess I’m done using Vaseline for the week.  I can’t wait to be back home in my OWN BED among my OWN BELONGINGS that no one else touches!   UGH!

WHO DOES THIS?!?!

WHO DOES THIS?!?!

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7 Things I Love and Hate About Eczema, and a Song About TSW

This post comes courtesy of my blog-friend The Allergista, who wrote a post on 7 things she loves and hates about her allergies.  I thought it was such a great idea that I wanted to do my own post on it, while still crediting her, of course!  If you haven’t visited her blog, check her out!

HATE:

  1. I hate that my self-esteem and self-worth is often linked directly to the condition of my skin.  I can be confident and vibrant, but a lot of the time I just can’t see that if my skin isn’t letting me feel that way.
  2. I hate that I haven’t been able to donate blood in almost half a year, because I didn’t want people seeing my arms and elbow creases and thinking I had some horrible disease or was a drug addict.  (I’m getting there though!  Today they are almost clear!)
  3. I hate that I can’t wear whatever I want, whenever I want to.
  4. I hate that it takes a lot of planning to go anywhere.  (Will my clothing be comfortable?  Do I have the appropriate creams and lotions just in case?  Do I need to take an allergy pill in case I get itchy?)
  5. I hate having scars all over my legs and arms.  Hoping they fade some more with time, since I didn’t used to have them a few years ago before my eczema started getting worse.
  6. I hate having to be paranoid about reading ingredient lists on body products and that I can’t just try any new lotion or makeup that I want, for fear it will royally bother my skin.
  7. I hate that other people don’t seem to understand eczema and aren’t more understanding of the huge impact it can have on daily living.

LOVE:

  1. I love that I’ve found new style options (hello, scarves!!) that I may not have otherwise embraced.
  2. I LOVE that as my skin has healed, I have felt very renewed and thankful.
  3. I love that I have matured and realized that my beauty and self-worth doesn’t come solely from my appearance.
  4. I love the nightly ritual of soaking in my bath with my Dead Sea Salts.
  5. I love that I’m so much more aware of the ingredients in cosmetics and facial products and now I know what products really work for me and won’t irritate my skin.
  6. I love that I no longer feel imprisoned by my food choices and have discovered many new healthy foods, while still maintaining the balance of having something indulgent to enjoy every now and then (like pizza).  I tried giving up almost every food under the sun before I knew I had TSW and was convinced my skin was probably “allergic” to dairy, soy, tomatoes, and coffee, among other things.  Now I eat these foods carefully in moderation with no problems!
  7. I love the friendships and support and encouragement that I’ve gotten through this blog!  I have met so many wonderful people that I never would have encountered without having eczema and TSW.

Now for a song about TSW.  Another great blog-friend, Amanda over at Celiac and Allergy Adventures, had a post recently how a popular Linkin Park song was clearly about eczema.   I realized that the song “Forty-Six and 2” by Tool, one of my favorite bands,  is totally spot on with the process of TSW and being renewed.  Here are the lyrics:
My shadow’s
Shedding skin and
I’ve been picking
Scabs again.
I’m down
Digging through
My old muscles
Looking for a clue.

I’ve been crawling on my belly
Clearing out what could’ve been.
I’ve been wallowing in my own confused
And insecure delusions
For a piece to cross me over
Or a word to guide me in.
I wanna feel the changes coming down.
I wanna know what I’ve been hiding in

My shadow.
Change is coming through my shadow.
My shadow’s shedding skin
I’ve been picking
My scabs again.

I’ve been crawling on my belly
Clearing out what could’ve been.
I’ve been wallowing in my own chaotic
And insecure delusions.

I wanna feel the change consume me,
Feel the outside turning in.
I wanna feel the metamorphosis and
Cleansing I’ve endured within

My shadow
Change is coming.
Now is my time.
Listen to my muscle memory.
Contemplate what I’ve been clinging to.
Forty-six and two ahead of me.

I choose to live and to
Grow, take and give and to
Move, learn and love and to
Cry, kill and die and to
Be paranoid and to
Lie, hate and fear and to
Do what it takes to move through.

I choose to live and to
Lie, kill and give and to
Die, learn and love and to
Do what it takes to step through.

See my shadow changing,
Stretching up and over me.
Soften this old armor.
Hoping I can clear the way
By stepping through my shadow,
Coming out the other side.
Step into the shadow.
Forty six and two are just ahead of me.

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It’s Only After You’ve Lost Everything That You’re Free to Do Anything

Its only after

(Thank you to Wayne at this blog for the above quote from Fight Club.  Wayne stopped by my blog a couple weeks ago as someone else that had been through divorce, and this quote was one of the most helpful things anyone could have said.  It kept rolling around in my head for weeks and I knew I eventually wanted to do a post titled with it).

[And now by saying I’ve lost everything, I don’t want it to sound like I’m completely destitute.  I have a lot of things I haven’t lost.  Friends.  Family.  My health, apart from the bastard of TSW.  My job.  My faith in God.]

But I’ve lost a lot of things with my impending divorce and TSW.  These things have robbed me of my husband – someone I dearly loved and someone who was my best friend.  I still love him and I still want to be friends, but the way he’s reacted to me makes it very clear that all love is gone on his end and seemingly all friendship too.  He told me he doesn’t want to hear any communication from me apart from what’s legally necessary.  I’m facing the stark reality that I may never see this guy again.  Someone that I shared so many things with has vanished, only kept alive in my life by photos and memories.  My wedding anniversary is coming up – a few months ago I THOUGHT I would be spending it taking a cross-country adventure together to celebrate our years of marriage.  This year I will be spending it in divorce therapy class – oh the irony.  My self-esteem has been taken from me.  The whole future that I had predicted for myself has been shattered.  My very self-worth and identity are often in question during this state of flux, as I sift through the pieces of who I was and who I THOUGHT I was, to get down to the inner core of my being and what I WANT to be and DESERVE to be.

When I got engaged and knew that I was going to take the vow of being with my husband until death do us part, I thought my life would take a certain planned trajectory.  Marriage, home ownership, perhaps some kids eventually, a few nice vacations, keep working at my job, get caught up in the general mundane doings of everyday life.  This trajectory was simultaneously comforting in its predictability, but now I realize it was also off-putting in its constraints.  Society and my family had certain expectations of me in my role as a wife, and these may not have been expectations that I was best able to fulfill.

I thanked God for my husband and my comfortable life every day.  I didn’t always verbally say “Thank you”, but there was always a general appreciation for being very fortunate.  I had someone to love, the money to live adequately, the resources to pursue higher education, the financial luxury of not ever being in need or want.

But just because something is comfortable and we feel satisfied doesn’t mean that it is the best thing for us.  It’s comfortable to sit on the couch in sweatpants all day and watch TV, but like this situation, comfort often means that we are stagnant and we are not growing and developing into the pinnacle of ourselves.  There have been DOZENS of days with TSW that I wanted to lay in bed doing absolutely nothing, but doing too much of this really wouldn’t be helpful.  It was more of a triumph and boost to my endurance that I persevere through going to work or school, even if it was uncomfortable.

When I look in the mirror and see my ravaged skin, the scars and marks on my body from what seems like a lifetime of scratching, scabbing, and shame, I see the potential in the person underneath.  I see what I was and what I can be.  Staring into my red, blotchy face, I see the same brown eyes that have looked out at the world for 20-some years.  They stare back at me bravely, wiser now, having seen loss and heartbreak and what feels like moving from a childish state to one of an adult.  The person I am has not changed.  I am the same Me behind those eyes.  I am a product of how I choose to react to the events around me and I choose to be an optimistic warrior.

A few weeks ago I was clinging to the shred of hope that maybe my ex-husband would change his mind; wanting nothing more than to get a text, email, or call from him saying, “I’m sorry.  I want you back in my life and my marriage; I love you; will you forgive me?”  Now I know that was delusional.  I have to be honest with myself.  I didn’t want to face the fear of being alone, so I clung to the happiness of the past like a drowning man on a sinking ship instead of just letting go and swimming into the abyss.  I was making up a new reality for myself that didn’t exist and would never have existed, because it was…. COMFORTABLE.

Now, even though I’ve been overwhelmed with all the soul-invading emotions of grief, sadness, fear, frustration, rage, and self-doubt, I’ve also been opening my heart to the welcome rays of hope that are Optimism, Perseverance, Faith, and Relief.  Now my life can take any trajectory it wants and honestly, that’s pretty exciting.  I’ve been making a mental list for myself of the kind of person I want to become – physically, mentally, emotionally, and spiritually.  I don’t need to cling to a husband or a failed relationship to become a whole person.  I may still regress and get sad and I may still long for the past, but I have a vision for myself and I’m ready to set forth on achieving it.

I close with a quote from one of my favorite books, Atlas Shrugged.

“Do not let your fire go out, spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet, and the not-at-all.  Do not let the hero in your soul perish in lonely frustration for the life you deserved and have never been able to reach.  The world you desire can be won.  It exists…it is real…it is possible…it’s yours.”

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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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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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