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

•July 3, 2015 • Leave a Comment

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
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TSW: day 27 fighting fire w water

•July 2, 2015 • Leave a Comment

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

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

•June 26, 2015 • Leave a Comment

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.

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.  But my face still feels dry, dry, dry.   It’s a long drive and I can only hope that my skin will behave so that I can enjoy my friends wedding.

jnet

TSW:  day 20 – what is worse getting bit by fire ants or dealing w tsw

•June 26, 2015 • Leave a Comment

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 until dry spot becomes troublesome again.

I was only barely gaining wellness and was slowly growing less well.  Despite, leading a relatively fit life, my face had its troublesome dry areas that made me not look like myself. Gym six days a week for weight training (it was meditative and feeling strong is good)  Low carbs.  Vitamins.  Cheat foods only on a specific day.  Yet, I would get skin flare ups and asthma days.  My moody skin put me into the habit of disappearing for months thinking that perhaps I needed to slow down (they say eczema is a stress reaction).  I took a break from dance, the rigorous rehearsal schedule and performance.

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

•June 19, 2015 • Leave a Comment

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 aren’t 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 out 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 topical steroids

•June 15, 2015 • Leave a Comment

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:  week one – is my head on straight?

•June 14, 2015 • Leave a Comment

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

 
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