tsw: day 66 two steps forward one step back

 

My skin is trying to roar. I had a few really good days where I felt happy in my skin. I thought I was strong enough....

To enjoy some jojoba oil.

Boy, am I glad I wasn't ambitious for lotion and makeup.

I'm keeping my skin at bay staying away from moisturizers (again) and taking immune system building supplements that seem to be helping. I didn't schedule a Bax treatment this week. I thought I was feeling better and could taper off. Blast.

I must note too that I ate some "novel" food that mom brought over. It tasted so good and I was in better spirits thinking I was getting all better. I sat at the piano without pain. My friends dropped by for a visit. I indulged a root beer.

I was feeling better. It was a "better" that had me feeling stunned and happy. I want that again.

Now. If not now... Tomorrow?

Hello universe. Do you hear me? I loved that feeling...of feeling happy in my skin. 

Two steps forward, one step back.

 jnet

tsw: day 62 - am I on the right path?

I don't have the patience to suffer a year let alone several years of TSW.

Before TSW, I was working towards weaning myself of TS.

My flares always won.  What I didn't know was that I had to QUIT using TS completely and not buckle when the tough got going.  How did I miss the anti steroid conversation after years of internet surfing for answers? I got distracted by this diet, this supplement, this magic skin application.  Life was a just barely manageable roller coaster and I couldn't figure out my triggers.  Was I allergic to the weather, something I ate?

My skin went through an intense first month of TSW.  Every week, I felt like I had a new misery to add to my list of angry reactions my skin was having.  Sometimes ice relieved me and other times hot compress.  By the end of one month, Benadryl and Ibuprofen stopped helping me feel better.  And true to TSW bloggers' own experiences, my monthly hormones promised a nightmare.  My skinned cleared up right after. Down was my first TSW month and I enjoyed a calm complexion week at comic con.

That was the one week I missed a Bax treatment.  I tried to schedule one immediately returning from my trip and found my chiropractor had gone on vacation.  Noooooo!!!!!!  My skin suffered, the pain escalated and I was up to three showers a day to calm the pain.  I was put on antibiotics after I made a strong argument against taking steroids and was happy to not be put on prednisone.  Been there.  Done that.

After a week, I completed my script of antibiotics and started to worry. That time of the month was to return.  After a couple of Bax treatments, I felt a bit more stable but had a sense of dread.  My skin was starting to turn red and angry again.  It was a slower simmer to angry this time though.  I had adopted the NO MOISTURiZER stance that I had read on several blogs.  I was soaking in Epsom salts and letting my skin dry out purposely.  The pain was less but still zappy.  I was also using natural pain / anti inflammatory medicinal options that enabled me to reduce taking ibuprofen and Benadryl.

Honestly, I now can't remember when I last took an ibuprofen.  I still take Benadryl and melatonin though.  Sleep is critical because that is when your body goes on full throttle mending mode.

I've also stopped carrying ice packs wherever I go.  My skin has cleared up significantly and I'm at a calm that has me blinking.  Is this real?  I'm not wearing makeup but I wore a pretty dress yesterday and didn't feel compelled to hide under a rock.  Something is different.

More thoughts at the next post.

jnet

tsw: day 57 watching the clock

I've run out of benadrly.  I've run out of bananas.  And I'm hoping tomorrow will be a good day for me to run errands.  Today, I woke up to dry, blotchy red skin that was having a paper cut party.  It's a weird and miserable experience that calmed down after a shower and a few ice packs.

I'm doing the NO moisturizer regime.  After I shower, I put nothing on to 'seal the moisture'.  No emollients, lotions, etcetera after I pat myself dry.  After reading several TSW blogs, I noticed there was great debate over whether to moisturize or not.  Moisturizers are seen as crutches that interfere with healing skin learning to be strong.  Many believe that suffering a short period of discomfort will open to a smoother roller coaster ride.  Skin will still be temperamental but less angry.

After last weekend's struggle to be comfortable enough to sleep an hour soundly, I'm keen to not have a repeater.  Pain is stupefying.  Sometimes, I feel like I dare not move.  Today, I wondered why I couldn't cry.  I must be too tired to bother or perhaps a part of me thinks that pain feels even worse if you cry.

You would think that reaching for an ibuprofen and melatonin would be second nature by now.  No, and I don't want reaching for medicine to feel normal.

It's 4am.  It's day 57 of TSW.  My sleep schedule is weirding out.  I'm looking forward to beginning a new day.  I'm trying out a new supplement whose reviews were impressive.  Tomorrow will be a new day to figure out and hack my wellness.  Good morning and goodnight.

jnet

TSW: day 46 i'd wear a veil if I could rock it

I'm looking my worst to date. And the pain is pretty intense. Yesterday, after taking two benadrlys, I was finally sleepy. I had not slept the night before due to the sparky electric like storm on my face. You would think I would just collapse into bed. Nope. The discomfort was so intense, I decided to stand in the shower (for the third time of the yet so young Saturday afternoon). It's the only place I don't feel awful.

My boyfriend called me his Barnacle Belle.  I laughed and it hurt.  Despite feeling like I look like a monster, he did not want to cancel our movie date night. I dressed up cute and wore a hat to hide underneath.  I'd wear a veil if I could rock it but fabrics near my face don't feel nice.

New thing, I'm on antibiotics this week.    Boo!  My face has a different thing going on and the pain has been more intense that I spent most of my time doing pain management than having time to consider eating or sleeping as a possibility.  My body didn't even fit in a hives breakout.  Yay?  And another tiny detail came to mind. Before TSW, whenever my allergies/eczema/asthma would flare up, my eyes used to get super duper incredibly dry.  I needed to use a steroid eye ointment.  Along with being able to breathe better than ever since TSW, my eyes feel happy.  Go figure.

I wish my face would feel happy.  I'm brainstorming for outside the box options. I'm not keen on riding a withdrawal roller coaster.

jnet

tsw: day 44 - a week of calm during comic con

My skin was relatively calm while on vacation.  It had some dry spots but the pain was at an all time low. My skin decided to go crazy after vacation ended.

I'm considering going to urgent care at the moment.  New thing: I'm breaking out in hives which last a couple hours and goes away on its on.  My right hand and arm has something going on.  Minor.  I can put lotion on my arm and it doesn't sting.

My face is another story.  I felt the discomfort start brewing Monday night.  Tuesday, my face felt like paper cut central.  Wednesday, I had a small and different rash along my left cheek.  Thursday, I found myself finding comfort by having a constant warm soaking.

I'm up to three showers a day just so my face doesn't hurt. Last week feels like a dream.  I hardly had much concern over my skin. Is it environmental?  Is it LA?

Comic Con was awesome by the way.  I hope to write of it.

jnet

tsw: day 31 where are my allergies?

Happy 4th of July. So I molted last night last a freakish butterfly. My face seems to have calmed down to a blotchy red. It took me a long while to fall asleep though. My wonderful melatonin failed me. After reading Juliana's research on sleep and how lack of sleep increases inflammation, I got up and took two benadrlys to knock me out. I woke up at 11am.

I don't recognize myself.  I'm taking photos but I'm not brave like other bloggers to post them.  So I take pictures of Ukee in place of myself.  This above is a photo of Ukee and my latest discovery, a natural air purifier.

What does a rock lamp of solid salt have to do with TSW?  Well stopping steroid meds makes me a bit concerned about asthma and breathing issues.  I don' t want to inhale steroids to breathe when steroids are having a not so great effect on me.  I discovered that Himalayan salt is the non steroid inhaler that is getting great reviews.  Since breathing problems seem weirdly not an issue, I opted for the air purifier instead of the salt inhaler.

Consider checking out Himalayan salt inhalers if you think your breathing issues are more prominent in you during TSW than my experience.  A month having quit topical steroids, I've not breathed easier.  No difficulty whatsoever not even the asthma "cough" that used to bother me.  Pretty air purifier lamp it is!

As for controlling the pain, still working on that.  I hurt.

jnet

tsw: I’m planning on feeling great tomorrow but….my skin has it’s own moods

I made an appointment for Bax 3000 when my skin was doing well earlier this week. By appointment time, 48 hours later, my skin was really really dry and angry. By evening after the appointment, my face calmed down considerably.  The next morning was dedicated to pain management and brainstorming how understand the ever changing condition of my skin.  My face looked relatively fine but the electric thunderstorm was in waves I did not like.  Imagine having a bunch of paper cuts smarting on your face.

It was not an ice pack day.  It was a hot towel spa day.  It was a miserable day and the pain had me at my kitchen table constantly cuddling a little wet face towel.

Why do I feel less discomfort when I'm teaching or with my friends?

Doing the dishes, while washing a knife, I actually thought that cutting my arm would feel less painful than my face.  That's how miserable it gets.  It comes in waves.  During the respites, I try to be productive; clean, pay bills, read other blogs on how others have found comfort.  I played the piano and was able to escape for a bit but found myself back to heating water to make more hot towels.

I didn't cancel my weekly dinner with my best friend, N.  Though I was a total turtle putting dinner together, I did manage to bake bread and make dinner.  I fought my body all afternoon to claim my dominance.  If there's anything I want to be a master hacker of, it's my own mind and body.  N. arrived and made salad.  My boyfriend joined us.  I felt better.

There's somethings that can't be bottled and applied.

As much pain I may feel, it's less sharp when I'm with someone who cares about me doing something that takes my mind away from the consuming misery.  After hearing that I felt better when I was not alone, my boyfriend told me to gather my things so that I can get some rest at his place.

I fell asleep by midnight.  It was good to not watch the sun rise.

Next week my boyfriend's brother arrives from Texas and we head off to comic con.  I'm planning on feeling great.  My skin may have its moods but I'm committed to figuring it out. I'm a negativity slayer.  I'm going through TSW and I know I will be okay.

jnet

tsw: day 27 fighting fire w water

My boyfriend bought me a set of glasses where the hearts turn red when the drink is cold. It makes drinking water fun.

Today is not a good day.  I had a terrible time trying to fall asleep last night.  I feel flat.   I wish I could be upbeat.  It's my roommate's bday, the weather is perfect and I have no students scheduled for today.  But I don't feel zippy.  I feel zappy experiencing a weird sharp zappy pain shooting across my face.  My face is feeling dry and inflamed, my lips are swollen like I've eaten something I'm allergic to and I'm tired.

I'd stay in bed but I'm forcing myself to keep drinking water.  I go between sitting at my piano bench to the couch in the living room.  I'm within 10 paces of my kitchen for a water refill and another 10 to run to the bathroom.

Yesterday was a better day.  What did I do right?   What did I do to affect this change?  Did I drink too much water?  Drinking water seems to help me with lessening the swelling and redness.  I still manage to feel thirsty even after 8 pints though and my skin is still dry. Tomorrow I will journal everything I eat and drink.

My face hurts today.  It's red and affected below my cheeks and along my jawline.  It's stinging with an electric zappy sort of pain.  I think the nerves in my face are freaking out. It's a tiny bit swollen and feels warm to the touch.  I don't want to put ice on my face nor any sort of emollient.  I'm afraid it will just add to the pain.

Any good news?  My neck doesn't feel like elephant skin.  It feels soft and smooth.  It feels 90% normal.  I can lie down comfortably.  I'm also still breathing free and easy.  No sign of asthma. Despite my bit of misery, I believe I'm getting better.   My friends, family, and my students and their families are so sweet.  I guess the kids know that the ice packs means I'm taking care of a boo boo.  A parent told me to feel free to ask for anything to feel better.  She noticed that I come prepared with ice packs and ibuprofen.

I scheduled a Bax 3000 appointment with my chiropractor for tomorrow.  I'm hoping to feel much clearer before the weekend.

 jnet

tsw: day 23 how I feel depends on the hour ….. literally

N:  "Jnet, your skin looks good this week.  Complexion looks clearer and even."

J:  (nodding in agreement). "Your face looks better than the last time I saw you."

Jnet: "J, you saw me yesterday."

J:  "Was that yesterday?"

This conversation was from Thursday evening, AFTER my Wednesday Bax 3000 treatment with my chiropractor.  It's Friday and I'm en route to San Diego for a wedding.  I'm drinking at least a dozen pints of water in hopes that I can drown out the baddies and wake up with better skin.

My skin is happier but not thrilled.  I'm holding a cold compress or ice pack to my face while my boyfriend drives.  He also patiently gets off the road and looks for a decent place for me to go to the loo.  We've stopped at three times and we've not traveled one hundred miles.

R:  "I'm glad you're drinking a lot of water.  I need to drink more myself."

He always finds something nice to say.

Today I am not red and swollen.  It's a long drive and I can only hope that my skin will behave so that I can enjoy my friend's wedding.

jnet

tsw: what is worse getting bit by fire ants or dealing w tsw

I battled fire ants yesterday at my students' house. That was seriously yucky. I rushed home and went straight to the shower.  My skin felt better yesterday before the fire ants and despite them.  I almost felt like a normal person...a normal person that can't wear anything unless it's super soft to the touch. Getting ready for the day is frustrating deciding what to wear that won't hurt. If I feel better tonight, I think I will make a project of taking off the tags. The tags on the collar alone irritate my skin.  I'm wearing my pjs inside out because even the stitching doesn't feel comfortable.

I woke up to a red swollen face that felt like it had an electrical dermis storm going on.  It took a few hours of ice packs and cold compresses to calm it down to a pink.  I'm drinking ginger root steeped in my French press with hopes that I can drown out the baddies.

Its day 20 of not taking any topical steroids for eczema and allergies.  Normally, if I used a topical steroid, the dry irritated areas on my face may calm down to a smaller patch of dryness, maybe not.  I would encounter some breathing trouble at some point and would add breathing in steroids (asthma medicine).  My "allergy flare" would calm down for a couple of weeks and I would repeat after a week or two.

But I was only barely gaining wellness and I was slowly growing less well.  I've become less sociable and have fallen into the habit of disappearing for months thinking that perhaps I needed to slow down (they say eczema is a stress reaction).  Seriously folks, I have made it a lifestyle to be a negativity slayer, working toward taking things in stride, defusing drama and staying away from toxic people and situations.  I think if I was a Buddhist monk, yogi master or nun, I'd still be struggling with flare ups.

Topical steroids have stopped working.  But wait!  Despite the misery of the red face electrifying dermis storm, I'm breathing free and easy.  I'm petting my students' cats and not sneezing at all. That's weird.

It's as if a part of my "life with allergies" has whisked itself off to fairyland.  My asthma buddies are lamenting allergy season and I'm standing alone with no need for inhalers.  Can it be that the asthma/eczema medicines were giving me asthma?

I'm reading up on non steroid ways to handle allergies.  Wow.  There's a whole world out there that I didn't know of.  Himalayan salt.  Who knew?  Google it.  I plan to write on it eventually.

So fire ants or topical steroid withdrawal...which feels worse?  TSW.  It takes a lot more to feel better if you are going through TSW.

jnet

tsw: day 16 - if only life was a day at the beach

The violin teacher thought I was sunburnt.

That's how red I was....am....

Wednesday I woke up to a balloon face.  The fancy word is edema and it means I puffed up. It began earlier this week and it seems to be my "thing of the week."  I had plans to get loads of things done like laundry, play the piano, but even eating seems like a luxury.  I found myself needing to choose between making food or cuddling an ice pack.  My ice pack won.

I scheduled a biofeedback appointment that took the redness and swelling down a smidge and then braved going to trader joes.  H told me the only reason she recognized me is because she knew me by how I walked and carried myself.  She wouldn't had known me by my face alone.

A:  "You don't look as scary as you think."  My roommate assured me.  Depending on the hour, I feel and look different.

My face is swollen. I haven't slept well all week.  Antihistamines arent getting me remotely sleepy.  And my ice pack is my teddy bear of comfort.  Despite my plastic tight feeling face, I have good news.  I'm not struggling with any allergies whatsoever.  No breathing problems and no itchy eyes.  I'm breathing free and easy and I'm petting my student's cat without breaking out in hives.  Go figure.

I'm thinking all these years of "allergies" and breathing problems have to do with using medicines that kept me slightly feeling well with occasional downward spirals of un wellness.  I never got ill ill.  But I got occasional flare ups where my skin would break in rashes or hives, my eyes would be itchy and I would have an inhaler in the ready.  Sometimes I had to break out my nebulizer.  Topical steroids....even steroids for my EYES as well as breathing them in as asthma medicine kept me "in check."   If I had a performance and had to look stage ready, I used oral steroids.

I've been working at weaning myself off of steroids for several years.  This is the first time I've gone off it cold turkey and committed to not return.  Thanks to my late night insomnia inspiring google searches and YouTube surfing, I found out about topical steroid addiction and withdrawal.

I'm not alone.  It's been my comfort to read other "skin warriors'" blogs about their journey into wellness that I've decided to go for it.

It's not easy but it's doable.  I feel I look terrible but I'm finding people are really kind and sympathetic.  It's day 16 of no more steroids.  It's a rough ride but I'm realizing keeping a good attitude makes the pain feel less terrible.  I have a friend's wedding to attend next weekend.  Here's to clearing up a bit before then.

jnet

tsw: day 10 of no steroids

What was once a couple of troublesome dry areas on my face has blown into a full face flare up.  Even my eyelids and ears are dry.  My face is slightly inflamed and swollen.  It hasn't turned red or sunburnt looking.  The back of my neck feels the weirdest.  The rest of me seems to be fine .

 I'd like to think the Bax 3000 treatments are keeping my symptoms mild because I've gotten much worse in the past.  In the past, my face would get very inflamed and red.  I thought my skin reactions were due to stress.  My rehearsal schedule was demanding.  My director would look at me and ask what's wrong with my face.  I would be prescribed a topical steroid to get things under control.  Nearer curtain time if I hadn't cleared up yet, my dermatologist would put me on oral steroids.

 I would clear up and slowly decline back to having dry, red blotchy angry areas on my face....then my neck ...then my arms....then my back....Many times even my eyeballs felt dry.  It didn't matter if I drank five pints of water or fifteen pints.

 After two cycles of oral steroids and angry skin in a row, I decided to take an alternative route.  I found I couldn't afford my condition.  Futile appointments with doctors who only knew the steroid path was getting expensive.  And the medicine was too strong and dangerous to use long term.

My chiropractor introduced me to the Bax 3000 back in 2011.   It's biofeedback technology and it's perhaps too modern (it's not mainstream).  I wish it was more available.  If you live somewhere where it is available, do it.  Fortunately for me, the technology is available fifteen minutes away in Glendale.

My skin has been relatively calm since using the technology. But I had these dry areas that would annoy me.  Sometimes I would request a Bax appointment for maintenance and sometimes I would put on hydrocortisone.  Most recently I was resorting to topical steroids.  It was less expensive.

Tube of medicine less than five bucks versus single Bax treatment forty dollars.  The steroids won.

It took me a while to understand that I lost big time with that decision.

Fast forward a couple of seasons.  I added  Chinese medicine and acupuncture to the equation (they were covered in my health care plan) and still "eczema" was not under control.  I decided to take on Bax treatments again but not before finding out about ITSAN and a constellation of people around the world dealing with similar skin issues.

Stop steroids was the mantra.

 I'm on day ten of no steroids and I've had two Bax treatments to calm the withdrawal reaction.  My face is dry and peeling but not as intensely as before.  My skin is not as angry either.  It's a calmer inflammation.  And I'm hoping that with Bax treatments it will only bring on calmer healthy skin. Until then, I'm grateful for supportive friends and family.  It's not an easy transition but I am optimistic thanks to other bloggers who've shared their story.

Now off to ice my face before teaching...

 jnet

tsw: is my head on straight?

G: "ooooh wow. did you get a facial treament?"

I went to a Dodger game the other night. My friend's greeting gave me some perspective dealing with my funky looking skin. They were excited to see me and thought I went out and treated myself to some beauty time at the spa. What?!?!?!

I am walking and talking like a normal person. And people say hello and hug me like a normal person. But I feel far from normal. My face is currently dry dry dry. Moisturizers hurt to apply. The only thing I'm using is zinc oxide which is popular for sunburn and rash and does not sting. I hold an ice pack to my face any bit of time I can get away with it.

Smiling and eating takes effort. I can smile with my eyes; claim that my spirit will not be trumped by my outer flaking and somewhat swollen layer.

As for food, it is after 5pm and I've not had a bite.  I think the corners of my mouth will crack should I repeatedly open it.  I'm saving my patience to eat for my evening meal.  Anyway, I've been meaning to drop a few pounds.

I have been reading several blogs of fellow skin warriors and it's encouraging to know that I'm not alone.  I am, however, doing something different that I've not read in any of the blogs or forums, utilizing neurological stress reduction therapy.

I guess it is a bit star trekkie.

It's helping and perhaps makes for a less miserable withdrawal from topical steroids.

I'm "molting" and my friends thought I'm recovering from a facial treament.  I guess that's cool.  Lesson learned this week - get my head straight on. I'm still huggable and it mostly only my face that hurts.

jnet

TSW: No More Steroids - Week ONE

I've spent the first half of this year feeling "compromised" and so I haven't written.

Compromised by allergies and temperamental skin, I'm up to the MAX amount of antihistamine I can take AND I'm not remotely sleepy.  A restless late night of surfing brought me to this video, giving me a direction in how to be a negative slayer to win my health back.

The people closest to me know too well how I wrestle with occasional bouts that come out of nowhere.  Is it an allergic reaction?  Is it hives?  Is it the weather? Where are my topical steroids?  Do I have an inhaler in the ready?  Where is my nebulizer? I never wrote about it because WHY immortalize a battle that has been going on FOREVER???

Watch this video.

I need to dash away to teach for the afternoon.  I'm inspired to write about this battle, which I intend to win, after reading blogs of other people who have suffered and triumphed the same path of topical steroids withdrawal.

jnet

otd: walking on rainbows

Once upon a time….

I lived as if jelly beans and champagne coursed through my veins.

Before you trip over figurative language, let me ask you…

Do you remember a time when you laughed, smiled and danced a lot? Thought the world was exciting;, the days welcome to wake to, the evenings a time to stretch hours?

You sprang out of bed and you felt compelled to stay up finding ways to extend time?

I walked on rainbows. You too?

I walked as some chose to leave as time passed. Different times. At nine years old, nineteen. After a milestone, new love or new job. Yet some chose to never walk off the rainbow, determined to adventure til they turned ninety nine and beyond.

I read my second post,“a happy thanksgiving with myself” and realized that I’ve not left the path I was on but rather I’m holding on to it from a different angle.

It’s not comfy. Imagine having your harness secure (support system ie friends and family) but your dangling in midair on your zip line because you’ve lost momentum.

That’s me.

Maybe you can relate too.

It’s a bit scary and embarrassing to not feel a wind on one’s sails.

On a bad day it’s a dull pain of thought and on a better day an urgency to go, fight, win hitting like a splash cold water.

I have a sense to want to pull myself upright and forward. Many days, slower than I’d like. Being discouraged and tired has now annoyed and frustrated me ….multiple times.

Do you know what scares me the most? 

The notion that I may forget how to be happy.

That is what compels me to write.

That…and being sick, tired and bored of how things are marching along. And like the beginnings of this blog, I am writing for myself. To help me make sense of anything that is good and right with my life, affirm my own existence and snap me out of my stuck on my zipline thinking.

And if it helps anyone who accidentally stumbles upon my world….. who relate to being midair. Reading quietly along so that they too may find their feet on the rainbow. Yay.

Jnet

outwitting the devil: awaking the sleeping warrior

Have you ever felt like you've woken up from a foggy nightmare only to realize that everything terrible that you've dreamed of did happen and that your waking moments were burdened by the weight of the experience?

Yet somehow, you had the tiniest bit of sense that you had to snap yourself out of a hypnotic, soul deadening way of being lest you lose yourself, living your days on a slow death march.

I used to.....

I can fill the blank with many many things.

I used to sing.  I used to dance.  I used to write.  I.........

My mind was filled with dizzying thoughts and fancies that I had to write, perform, do something to express that fervor for living.

And then I found myself silent.

Call it the fortress walls, the defense shields.  I placed all energy and trust into a protective system while I worked on restoring myself.  Time passed and I found that though I felt safe and parts of my world yet thrived; I was dying.

Wait... didn't my friends call me warrior?

Vague memories of bright yesterdays bank about a head that feels like swiss cheese.  I cannot rely on my friends or family to break the codes that will free me.  Loved ones are always there like guiding stars.  We all have our guiding stars.  Yes? And at the helm directing our feet forward and our thoughts beyond us, its simply you.

What say you captain?

What shall I tell myself?

I feel as brilliant as a brillo pad...and just as cute.

For now, I sleep walk.  Half awake, half asleep and weighed by a nightmare.

I don't remember how to be alive.

So I've returned to the beginning; to my first blog post.  Like a baby, I've put my feet upon the feet that knows how to walk.  I will use words that I once used so that I may find my voice again.

The future begins here....

I'm waking up...

JNET