TSW:  day 44 a week of calm during comic com

•July 15, 2015 • Leave a Comment

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

 

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TSW: day 31 where are my allergies?

•July 6, 2015 • Leave a Comment

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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

•July 3, 2015 • Leave a Comment

I made an appointment for Bax 3000 even though 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 to 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

•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

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

 
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