tsw: day 66 two steps forward one step back

•August 7, 2015 • Leave a Comment

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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?

•August 4, 2015 • Leave a Comment

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

•July 29, 2015 • Leave a Comment

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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

•July 19, 2015 • Leave a Comment

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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 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

 

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

 
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