quality of life

It pains me to feel this way sometimes. I lose my motivation for short spurts that seems like lifetimes. But the truth is the truth. And people with a skin condition struggle immensely and our overall quality of life is affected deeply.
Literally everything we do includes the skin. There is no checking out from this pain and exhaustion. You cant hide it from yourself or anyone that glances your direction. You are humbled every morning you wake up and walk to the mirror or touch your skin first thing and already feel like you have no control of over yourself. You’re humbled when strangers at work or the grocery store catch a glimpse of the burning red wrist or neck and look back to your eyes with concern and confusion. Most likely, we look down. How does that affect our brain? Always looking down and being small. Feeling defeated. Helpless. Tired. Uncomfortable. The body and mind connection is real and this is a sick cycle that I am have been curious about breaking for four years now.
Perhaps it’s stronger than me and everyone else going through it, and maybe it’s done with you when it decides it’s done with you. Until then, stop fighting it. You won’t “win”.

I have red skin syndrome. I don’t have cancer and at least I have my legs. But regardless, anyone else going through this and myself included can probably state that this seems like the hardest fucking thing to ever go through. It is the cherry on top of everything stressful in life reminding you at the end of the day you are at the mercy of nature and your frail body.

It’s not giving up. I’m just having a moment of complete surrendering and stillness in the moment. Here I am. Hot, swollen, stiff and defeated. I am falling apart. And there is a silver lining because when I reach this dark place, what follows is always lighter.

Point is through out all of this is that now it’s out of me. A little bit. And it’s here on my blog to offer a chance for someone to reminded that they are not alone in their suffering. In my vulnerability, we both heal.

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There is no cure in the up and down.

Chogyam Rinpoche said that. “There is no cure in the up and down.”

Here I am four years later, completed kundalini training, teacher training at Sukha following teaching there for three years, massage school, yin yoga training, a year of college at Texas State, I got engaged and over a year of therapy that stemmed from the trauma from my skin. SO MUCH has happened.

I feel like I should I know how to treat it this time around. I should be ready. I should embrace it and not resist or shame myself. I won’t be embarrassed and I’ll ask for help when I need it.
But it seems like deep down I haven’t grown at all. All those things are still present for me.

I am ashamed. I am embarrassed. I don’t want help even though I feel myself slipping every day. I am definitely resisting my current experience. I have horrible self denigrating thoughts again. It’s so difficult to do anything. I don’t have a solution and I don’t know what to tell people because what I used to tell people was that I already went through TSW. So what is it now?

Does it literally take four years to clear from your system?

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I think we have to rest in the unknowing. Which in our case, is the most uncomfortable, scary feeling. I’m exhausted from fighting my own energy lately so I don’t have much to share.

If you are going through TSW, just please drink lots of water and take deep breaths and don’t obsess over what will fix it. We don’t require “fixing”.

High on mountain life.

Recently I went on an eight day road trip to Santa Fe, NM and Pagosa Springs, CO. We had a couple stops on the way there and the way back. It was so marvelous to be out on the open road with no real schedule or obligations. No obligations. No responsibility. That was something I really have been indulging on lately not knowing the consequence. 
If you're reading this because you googled topical steroid addiction or withdrawal, just know that too much of ANYTHING is bad. And that moderation isn't a skill we are born with either, it's a practice we must engage in daily. 

After my skin reached a level of healthiness that allowed me to go out in public and not shrivel in pain or embarrassment of a flare; I haven't stopped attaining new goals. I have had new jobs, been attending massage school, finishing up my basics at the local community college and teaching yoga at my favorite studio in Austin. But all that, all the time, every day is a lot. I wasn't giving myself enough time to totally decompress and fill back up.

I was experiencing burn out.
Common condition in our culture that is usually treated with more caffeine, pharmaceutical drugs or quitting/blaming. Lucky for me, I have about two and a half years experience of NOT checking out or quitting and healing the ultimate burn out. 

During the learning process of TSW, I learned how to care for myself. I learned the importance of relaxation for our bodies and minds. I knew it had gotten bad recently when my neck started to flare three days before the trip and I was developing a sore throat with blisters. I was finishing up a research paper for my online history class, organizing my career project for massage school, working extra shifts for money and teaching classes literally the day before I left. In a frenzy packing for the trip, I packed my planner, binder and some textbooks because I was so stuck in the pattern. Work, work, work. Accomplish, accomplish, accomplish. Succeed, succeed, succeed. 
FUCK THAT. Ugh. It took me about two days on the road to truly decompress. It was hard to remember how to calm down on a deep level. But that's what got me through TSW and it's what is going to continue to get me through life. 
We have to let go every now and then. We have to remember how to have fun and be in awe of life and be grateful. I had to stop "looking" around for something fun or relaxing on the trip and just be in wonder by all the beautiful nature and new scenery. When we can respond to life from a state of peacefulness, we realize nothing is as bad as we make it out to be. Our minds create most of our problems and they also even exacerbate our mental or physical problems. We can even begin to realize all the beauty that goes unnoticed when we fall into that pattern of busy-ness.
So driving on the road being on the go ironically reminded me to stop and slow down. 

I needed that vacation of driving far far away from home so I could come home to my body/mind/soul. 

Since my return, I have been reminded daily to >

1. NEVER stop my daily meditation practice.

2. Trust the universe. (this one is hard)

3. Have fun in life. Or perish. 

4. I still want to move to Colorado one day. As of now. 

Until next time warriors :)

 

The flare subsiding on day three in Santa Fe. 

The flare subsiding on day three in Santa Fe. 

Hardest hike of my life to Ice Lakes outside of Silverton, CO.

Hardest hike of my life to Ice Lakes outside of Silverton, CO.

Boyfriend. Me. Cousin/Best Friend. Her Fiancé. <3

Boyfriend. Me. Cousin/Best Friend. Her Fiancé. <3

Relatively easy hike to Treasure Falls outside Pagosa Springs.&nbsp;

Relatively easy hike to Treasure Falls outside Pagosa Springs. 

We don't require any fixing.

This journey is especially hard when we feel stuck and hopeless. All the creams, diets, and supplements don't do what we want. They don't "fix" it.
But what if what we needed wasn't fixing? What if all we had to do was just sit with ourselves, take good care of ourselves and love ourselves exactly where we are right now? It sounds easier than it is, sure. 

But I remember getting lost in each flare up and what caused this one and what new trick was going to hurry up and get rid of it. All the while life was still passing me by, hard as shit sometimes and I was fighting this skin disease. No, it had me in a choke hold actually and I wouldn't tap. 
You are fine just the way you are right now. The universe led you down this dark, bumpy path to show you something indestructible within. 

I want to apologize to anyone that has sent me emails in the past 6-7 months. It was being sent to an email I no longer check but I recently changed it so my blog sends the emails to my current address. I still want to connect with people and answer any questions and soothe any anxieties the best I can. I still go through mini flares on my arms and neck and low and behold, the rituals I count on clearing it up is cleaning up my diet and DECREASING MY STRESS. Epsom baths, meditating, quality time with loved ones, colorful food and lots of water. We are not on this path alone. Don't be afraid to reach out for help. 

I will post pictures soon. I cut all my hair off so it can grow back healthy so the next set of pictures will debut my pixie cut :) 

After I began to prostrate.

Day 60-something of Kirtan Kriya and a week into a new meditation with my cousin. Here I sit in a coffee shop in a TANK top with no sweater and no pain. My skin isn't perfect but it's pain free and gaining softness again. The angry swollen red phase has passed for now.

Praying became essential. 
I had exhausted all avenues. I amped up the healthy food and juices, stocked up again in the good vitamins, made time to take savasana naps in the middle of my day, drank LOTS of water and then I finally fell to my knees and just prayed to God. I prayed to grant me the serenity of the things I cannot change, the courage to change the things I could and the wisdom to know the difference. I cried and prayed every morning and every night. I sang chants in the car and sang chants while making breakfast. I prayed during yoga, during epsom baths, when I taught yoga, after studying, anytime I had a second I prayed. It began to feel good. I began to feel good, better. 

Just like last time I experienced healing, it happens so quickly I don't even notice at first. I become to busy taking care of my self that all of a sudden I have more time to take better care of myself because I don't spend all of it curled up in pain and fear. 

Two kinds of prostration, I have practiced both. Both have made me stronger and more resilient. 

I promise to continue to pray for myself and all beings. Especially all you warriors out there reading this. 
You are so strong for going through this, I bow to each and every one of you <3

Prostrate- 

 

verb

  1. 1.

    lay oneself flat on the ground face downward, especially in reverence or submission.

    "she prostrated herself on the bare floor of the church"

    synonyms:throw oneself flat/down, lie down, stretch oneself out; 
    throw oneself (at someone's feet)
    "he prostrated himself on the altar mat"
  2. 2.
    (of distress, exhaustion, or illness) reduce (someone) to extreme physical weakness.
    "she was prostrated by a migraine that she could scarcely get up the stairs"

I will post more soon, I need to study! 

Yin/ Yang

I have been off balanced lately. I haven't introduced enough Sukha into my life lately. Sweetness. 

Only effort and pushing myself. Going going going, FLARE. I have done almost everything in my power to heal except rest. Taken all right herbs and vitamins, drinking enough water, not drinking anymore alcohol, all of it. Except just chillin'. Shit. 

I deemed today my official day off in over a month and it feels super good. Slept most of my day so far and I will be honest and say I TRIED to go study somewhere and then attend teacher training but the skin persisted I stay. My cheeks and neck are tight and dry and swollen. My arms are tender and raw thanks to my insomnia other half who tears away at any healing my body achieves. My mind and spirit are exhausted but grateful for the rest. I need more of this. 

Monday at work I had an anxiety attack that really scared me. It also scared the pride right out of me. Like an untamed parakeet desperately trying to get out while hitting all the windows and finally finding that exit. Who am I trying to impress now? Pride will NOT help me in this journey. The ego has a time and a place and I'm not ready for it yet. Right now I need my soul to heal so my skin follow. 

I scheduled my first appointment for therapy next week. Reaching out for help has already made me feel stronger. 

lazy dayzz

lazy dayzz

My wooby

I realized the past two years, my "wooby" or safety blanket is shutting down and hiding out. I am sick of facing people when I look so insane. I fear that people are disgusted, that they think this is something I have had my whole life and will continue to have, or that maybe they even think it's contagious. Writing that out I realized that I obviously care too much what people think anyways. Another reason I hide out is because when I am around my friends, I don't want people to feel super sorry for me because I will just cry and act like a baby. I would love to just get hugs and be told everything is going to be alright; but some part of me won't let that open up. Like I wont be strong if I do that. 

What I think about this whole ordeal is that it's absolutely the hardest thing I have ever been through and sometimes I want to give up. I am in pain most of my day and completing tasks and working and trying to enjoy life only induce more pain. How am I not depressed yet or addicted to painkillers? I dont even like taking ibuprofen in fear of adding another chemical to my body. I feel like I am going crazy but my body and mind have just adjusted to this sickness. Waking up flaky and tight every day, talking to people when I feel a pulsing throbbing in my face and neck, wearing long sleeves in a Texas summer. This is my life right now and there is nothing I can do to change the situation that I am in except my perspective. 

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Looks better than it feels.

The past recent flares have been absolutely utterly excruciating. Of course they have been happening during extremely busy times of my life; road trip with boyfriend, busy work day at the cafe, yoga class to teach; it never fails. 

I was thinking that this HAS to make us stronger to continually endure pain so often and so intensely. Showers make me grimace and cry, turning my head causes a sharp needle like nerve reaction down my neck and back, stretching my arm out tears the skin so I shrug my shoulders all day to compensate. Taking big bites of food hurts and the skin is so tight it pulls down on my eyelids when I yawn. 

Yet with all that pain, it doesn't look as bad as it used to. But feels the fucking same. 

red spot on cheek that flakes and scabs continuously over and over again.&nbsp;

red spot on cheek that flakes and scabs continuously over and over again. 

PS&gt; I cut all my hair off due to the large amounts I was losing...

PS> I cut all my hair off due to the large amounts I was losing...

flare during roadtrip

flare during roadtrip

The second flare on my road trip was probably one of the top three most painful experiences in my life. I questioned everything, if this was really TSW or I had some terrible disease, if it was because I had enjoyed recreational marijuana in Colorado and I need to change my life around, and then I finally wondered if for some reason I deserved this misery. Shit got real that night in the bathtub for me. My mind was spinning out of control and my face, neck and arms had a throbbing pulse to them that shot painful needles  to the area and surrounding area every time I moved or took a deep breath.  

The second flare was this morning before working at the cafe on Labor Day. I wanted nothing more but to crawl back in bed and sleep it off until the afternoon where I would then sink into a bath. But instead I worked one of the busiest days I've worked there and consequently the longest.

I am about 26 months in; a little over two years. SO much has changed yet I also feel like nothing has since the first flare. 

Dear Universe, 

   I have genuinely had enough, I want my normal life back where showers didn't feel like battery acid. 

Sincerely, 

Little Red Sol SIster 

Flake city.

Right now I can barely keep my hands off my skin to write this blog entry. My face feels swollen and tight and  am trapped inside this flakey body. 
My arms are horrible and despite the 104 degree weather outside, I walk out of my house everyday with a long sleeve shirt on. 
To look up cracks my skin open. To take a big bite, to smile, to turn around, all of it feels uncomfortable. 

I have been trying to make plans to make it to more yoga classes, but I just cant. Everything is so fucking hard and this flare is draining me. I feel wiped out in my body and the more stuff I try to fill my plate with; yoga classes, running, cleaning the house even doing my laundry is a task that I want to ask help with. 

It's spread to my nipples, my underarms, my scalp, and even a spot on my fucking hands. 

I am finding it very hard right now to be angry and frustrated. For about a decade, I was using steroids, getting shots and not one doctor told me the risks. 

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There are flakes everywhere, I want to clean all the time but instead I just end up resting in my bed. I want to go outside and tan and run and take yoga classes any chance I get, but again I just usually end up resting in my bed. 
I am tired. I am losing hope after two years when I think about how much longer I have to possibly endure this? I also am sorry if anyone following my blog who was looking for hope and inspiration didn't find it today. I am overwhelmed with my responsibilities currently and I want help or a break.