#scleroderma is making me suffer right now

[ferretly]

*

[comradepreet]

As a kid I grew up really quiet

As soon as I was born there was problems

I was not a boy I was a girl

I was showing symptoms of Asperger’s

I was non verbal & lashing out as a kid

Grandma would joke around saying I was a lot of work & trouble

I was biting kids because I didn’t want to play with them I was getting bullied, because I couldn’t talk

I was forced to stop, grandma feed me hot chilli’s to stop me from doing that, I have acid reflux now

I was not verbal her joke of hide & seek was neglecting me then yelling at me for hiding in a suitcase I was 4

More lashing out, I loved visitors they always had treats n gifts only time I got it was my birthday

I think I was assaulted by all the men in my family because I was born a girl.

Deprived of food, care, just basic human needs & rights

I wonder pretend to be a cartoon to deal with this trauma i don’t want to look at those pictures anymore

They make me dizzy to think about it

They hit me when I lashed out instead of taking me to a doctor or scolded me or deprived me of food until i behaved properly like the stray dogs they brought in

It’s really disgusting to think about it I was á curious quiet kid they kept forcing me to do things I didn’t want

When strangers were over, they would shut me up

Hit me scold me talk over me

I’d here them talk about me like i didn’t exist

Relative’s never did anything or notice something odd

I was á really sensitive kid

I wanted to make things and learn

Every time I wanted to I was stopped

My entire life when I tried to establish my independence & own identity along from gaining any health coping mechanisms

They took me to pray it away i instead of the doctors, weird baba on these trip

I was always uncomfortable in my skin

It continued until I got my first migraine and puked in front of my aunt’s house

I was near death diagnosed with scleroderma, rheumatoid arthritis, mixed connective tissue disease effecting my lungs, liver, digestive system so much acid reflux I could eat probably after my treatment still can’t

I document this because I don’t feel safe

I’m trying to change my circumstances genuinely & people never believe me it’s been my entire life

They prevented me from seeing a counsellor n therapist chose to discipline me instead

Especially in high school

I was a bright kid

I’m trying to heal but it seems really Impossible when they are around me I need to leave

They all new stepped in I’ve fell through the cracks constantly & blocked from help regarded as dead weight once my purpose was served

I was pretty much their person slave to make money of off and Pimp

I get angry at men for this reason & people who support these men

And the systems that maintain these structures, healthcare systems, hospitals, mental health care

People don’t see use as human we are commodified machines to program to their command

I want to change it so bad, I’m suffering & been

Trying to look for the right community to fight these injustices with

But it lead me to be homeless, broke, severely disabled n sick again

I dissociate a lot, I have a lot of unexplained scars all over my body

I was pretty much tortured for not being born the standard to breed & pass wealth through the patriarchy standard

Not a man

I’m neither a woman

Im a person with Asperger’s severely traumatized to the point I’ve developed

All these disorders as a coping mechanisms & it’s rearing it’s ugly head

I see patterns everywhere, I make the write connections put it in to my art at times

And post on social media to document my abuse & trauma link it to the major institutional issues as journal

But I didn’t want to be constantly taken advantage of

No one gave me money to leave this place

I’m still withering away I think they are slowly trying to kill me

Idk maybe I do deserve it

They hid so much that I only had pictures of my time there but wasn’t given any context until I heard stories

It would conjure up these bad experiences I’d get do suicidal because I had no way out

No one listened, my entire family full of narcissists only cared about the money they could make & show off

I know it’s alot but if you really want to help me i really need funds

I’m unable to work

It’s getting difficult to get up & be motivated n not just wither away they leave for that wedding soon

They have been spying on what I’m doing because they forget I hate weddings i have trauma from it

But they kept pestering, i dont want to get myself killed honestly

They have weapons

I just want to make art & survive

No one helped but only helped themselves.

I wish they did more they always made excuses

I’m hungry sometimes it’s extremely hard to sleep because I’m up night but idk why

Just don’t tell them I posted. I DONT WANT TO ENGAGE. I WANT TO THROW THINGS AT THEM WHEN THEIR AROUND THEY RUINED MY ENTIRE LIFE WTF

0$ to my name now how’s that a story for a starving artist

~ Preet

[andyaliao]

Wisdom Wednesday: Autoimmune Diseases

If I could resolve one world problem, I would find cures to autoimmune diseases, ranging from alopecia areata and scleroderma to Crohn’s disease and gout. As a person who has had an autoimmune disease, I can attest to how emotionally draining it is treating them. Many autoimmune diseases such as alopecia areata are enigmas of their own. In response to both physical and mental stress, my own immune system started attacking my hair cells, falsely believing that my hair cells were foreign bodies invading my body. What was strange was that having alopecia areata did not physically hurt me or physically give me discomfort in any way. There are a multitude of treatments out there for patients with such diseases to try but based on my own research from personal experience, none of those treatments ever have a success rate of over 90%. I tried over seven courses of treatment before finding one that finally worked. With that being said, the ideal goal would be to completely rid the world of autoimmune diseases, but even I know that this goal is too naive. A more realistic goal would be to increase the chances that treatments are successful, so that patients suffering from such diseases do not have to try too many before finding the right now; and to raise awareness on how to prevent acquiring such diseases.

First and foremost, according to Dr. Bilstrom, Director of the International Autoimmune Institute & Bingham Memorial Center for Functional Medicine, in the United States, autoimmune disease is a rising health crisis. He states that “Today, 50 million Americans -- 80 percent of whom are women -- suffer one or more autoimmune conditions.” This is a common trend around the world as well. Factors such as change in economics, environmental factors, the way and types of food people eat, and changes in toxicity levels all come into play when affecting the rates of autoimmune disease at an international level. For example, Europe and Scandinavia now have the same rates as the United States, with Asia and Southeast Asia falling not too far behind. Evidently, autoimmune diseases are becoming a worldly problem that needs to be addressed and tackled before the problem festers.

One way to address this problem and increase the chances that treatments are successful is to find ways to combine treatments that have about a 70% success rate into one collective treatment or simultaneously get two or more treatments (provided that there are no harmful side effects to doing so). For example, for alopecia areata, what finally worked for me was combining consumption of peony extract and intake of licorice extract, in addition to receiving weekly acupuncture. Furthermore, I would want to make an impact on the world by raising awareness about the issue and discussing about the leading factors that cause such conditions to develop. I would stress the fact that the body can effectively heal on its own, so people do not have to maintain a perfectly healthy diet, but they should definitely watch what they eat and minimize intake of legumes, processed foods, and dairy products (all of which cause a leaky gut and can cause and exacerbate autoimmune conditions). Furthermore, I would inform people, especially those living in known toxic environments, to be especially aware of the water and food that they consume.

References:

https://www.healthline.com/health/aip-diet#foods-to-avoid

https://www.binghammemorial.org/Health-News/autoimmune-diseases-around-the-world

http://pubs.sciepub.com/ijcd/3/4/8/

[chemochronicles]

The Day That Happened. Gas station poop dilemmas and other stories: A Day in the Life with severe Chronic Graft vs Host Disease.

This is my gas station poop story. If you can’t handle it, I warmly invite you to stop reading.

First things first: a small update. I don’t have energy to write a full one, but this has been the hardest physical month of my life living daily with chronic GVHD thus far. I had a few different separate bad reactions a few weeks ago which put me in the ER, unable to open my eyes or mouth in all severe pain, or move my body without severe scleroderma skin hardening/tightening/cracking pain nonstop for around 5 days. My team wanted me to be an inpatient for two weeks for pain management and IV nutrition but they didn’t have any beds available. Thankfully it’s much more comfortable for me to be at home though with all of my autoimmune relief protocols so it worked out better. I’ll share a better update when I have less going on… the good news is though, I am seeing small results from the photopheresis blood treatments, my skin is improving little by little. Which means that they’re working for now, and we hope to see more improvements as the months pass! Please keep praying! I also had a little accident where I lost the first layer of my eye and now have large (not visible) wounds on the outer later, the last few days I haven’t been able to open them at all but thanks to the help of a friend I was able to get this finally put together! I am waiting to get an appointment to have these special PROSE (prosthetic) eye contact lenses made, as well as special blood serum tears spun from 30 viles of my own blood from the only clinic in California who offers this technology, in Irvine. What a blessing that I have this accessible to me! My eyes are so dry they’ve been unable to heal, and I can’t open my eyes at all without heavy pain killers. So please pray that my eyes would miraculously heal quicker than we expect, or that all of these processes would be expedited.  All of my issues are very specific and require specialists who book out pretty far in advance. 

Back to my story! 

The day that happened. 

The morning started off better than usual. My acupuncturist who has become one of my favorite people in the world lent me her very own healing mini biomat. She has a full sized Amethyst Biomat in her office that is amazing if you go 2-3x a week for chronic inflammatory health issues. But she wanted to see if using a portable size one at home each night might make a difference with all of my severe symptoms, so she let me borrow her personal one to try sleeping on and using whenever I have time at home during the day for two weeks. God is so kind to place so many sweet people in my life who are going out of their way to help me!

Not gonna lie, I was skeptical. I have tried many wellness tech devices in clinics and at home and didn’t expect much more of this one. But my goodness, does that thing make a world of a difference when you’re using it consistently for insomnia, chronic pain, chronic fatigue and so much more! I could sing it’s praises and would love to learn more about this technology so I can share more and help my other chronic pain suffering friends!

SPEAKING OF WHICH! Kathleen and I put together a little Spring Seasonal discount for my friends and readers, if you’re interested in trying the full sized Amethyst Healing Biomat that she has available to reserve for 30 minutes in her space. She’d like to extend a little discount to you as well as a free acupuncture consultation to those who are interested. She has helped me reverse many of my food allergies, other environmental sensitivities, and helps me SO much with my other severe symptoms as well, which all in turn has helped me along this path. She works a lot using acupressure with kids, helping them reverse their health issues by balancing out their allergies! She’s a wonderful resource that I’d be selfish to keep to myself! I love it when my friends are able to both be helped and also supported by the people who’ve helped me! I’ll share details at the bottom! ♥️

Anyways. I was pleasantly surprised and a complete believer after using it every day for two weeks. So when most mornings I wake up feeling like I got hit by a train until I wait for pain relief to kick in, I woke up feeling better than I had in months. I was only in 5/10 pain as opposed to the usual 7/10. My sandpaper eyes were still glued shut but once I finished my two hour morning biohacking wellness routine I was ready to leave the house less tempted to have a bad attitude, which is everything for me these days!

Earlier that week a sweet friend dropped off the most amazing Julia Child worthy home baked rotisserie chicken, to which I used the leftover bones to make some pretty incredible broth! I was feeling blessings surrounding me from every side in the midst of all of those storms raging. I hadn’t been able to eat solid food in over a month or two and haven’t been able to function (eat / drink / talk / + constant sharp pain caused by ulcers, scleroderma hardening & tightening limiting the ability to swallow and also meanwhile thinning of the mucous membrane lining of my cheeks and tongue and other inside skin, causing severe sensitivity to even water) without lidocaine for a few weeks. So any taste of flavor without tears was a major win! My mom came and picked me up around noon to leave to see my natural doctor. She’s 90, and a naturopath with PhD’s in nutrition and biochemistry and is also a super sweet believer who works within the field of energy medicine, along with analyzing blood work and balancing the body using Russian astronaut biofeedback technology. (I could nerd OUT about wellness tech, guys. All day LONG!)

She has saved my life SEVERAL times over the last 8 years in some seriously hard times when the field of medicine wasn’t able to! So the morning was GOOD! It took me an hour and a half on the drive there to drink my bone broth with small bites of fresh soft sourdough with ghee on top for lunch. It only hurt maybe 4/10 instead of the usual 8!!! But I FINISHED it! It was the first meal I completed since I couldn’t remember! I played Oh Happy Day and rejoiced at that win for a few minutes.

The appointment was wonderful as always but super long because she invests time and care into each patient. I was drained. And by drained, I mean I couldn’t open my eyes, mouth, or lift a finger. When I say drained, I mean debilitating exhaustion caused by adrenal failure (what happens when you take steroids for too long, but that’s also how they TREAT GVHD! So. It’s a pickle that I’m in! We were parked on the freeway at 6:30pm. My GVHD of the GI tract decided to take its vengeance out on me at this pinnacle moment… we stopped at a Starbucks just in time… it’s hard to move because scleroderma has hardened and tightened the skin on my body from the neck down, and sometimes that causes people to eventually be in wheelchairs or on oxygen because of the loss of mobility. So I’m fighting hard against that with physical therapy and everything else… but the struggle is real!

We get back on the freeway, and sure enough, I feel another rumble. We hurry off to a well lit gas station. I hurry in and ask the Lord to please help me NOT recreate any dumb and dumber scenes. I guess this is my life now. This is fine. Ugh, do I have to start wearing depends? Does this mean I can’t wear my beloved leggings anymore? Who am I?! All these thoughts keep running through my mind. This is not my home.

This. Is. Not. My. Home.

A grizzly looking man with an eye patch and a reflective neon yellow vest with the bathroom key walks past me into the bathroom. He looks at me as he closes the door with a dirty looking gender neutral sign hanging on the back. I look nervous. He looks like the kind of man who might intentionally miss his aim. Excellent.

I’m dizzy so I lean against a magazine stand, close my eyes and continue to pour my heart out to my Counselor through each tummy grumble… in that moment, when life just felt unbearable… I was just so done. I love Caleb. I adore him. I would give absolutely anything to make him happy. My love for him and my fear of God are what keeps me motivated to stay alive and fight every minute of the day. And it’s a true driving motivation.

But in that moment… I was selfish. It was cold. My joints have been getting severely painful in the cold, it makes me shiver and have trouble breathing and then I start to panic. I was begging God to help me not have an accident right there on that gas station store floor. I asked God to please help me not catch any of these nasty germs that I was unable to fight off in this dirty bathroom. Asking Him to give me strength to breathe through the cold, strength to breathe through my anxiety, through the scleroderma breathing issues and grant me enough range of mobility in my skin during those few cold steps to the bathroom without crying from the joint, skin, lung, ulcer, eye, mouth and tummy pain. So in that moment… and in light of all the thousands of moments each day perfectly mimicking that one… I begged God to please, just let some crazy psycho come in and just shoot me in the back of the head really nice, painless and fast (Don’t worry friends I’m not remotely suicidal).

It’s funny the things you start to pray for when your body is failing.

It seems trivial now to pray for things like my finger nails to stop falling out, my hair to grow back, to be able to wear jeans and heels again… To attend church, to serve, to live, to be a mother someday… when in the same breath each minute, I’m also asking God to grant me the strength to help me take another step, another breath, and help me to chew and swallow an entire meal in without a single tear or regurgitation.

Life is a funny thing.

And I also say that, with 100% peace, assurance, confidence and joy. I am rejoicing in HOPE in JESUS through every impossible step.

Guys, I’m THIS low, there’s no confident end in sight. This is just my life now. I don’t know if I’m going to have to suffer with this for another long and painful 50 years like Joni Earickson Tada has had to endure, if I’m going to happily die and see my Savior’s face next year or if I’m going to happily heal and God will use Caleb and I mightily together here until it’s time to go to the comfort and glorious perfection of Home.

But in light of Romans 8, I have never been able to say more confidently that God is good. In light of THAT, I can truly laugh at the days to come! Proverbs 31:25. So if you’re truly a believer, stop complaining. You’re gonna be fine. Rejoice in hope!

Anyways. Icky grizzly man walks out and hands me your typical long black gas station bathroom key holder and key. They’re wet. And there’s no napkins in there. I’m still asking Jesus for help throughout this entire process because without His strength I, millennially, just “CANT EVEN.“

So there I am.

MINDING MY OWN BUSINESS.

LITERALLY. 💩

Thinking that the door is locked… because… I have the lock and key. And that’s how those things work.

So there I am… giving my body the release it needed… when BOOM. The door SWINGS NICE AND WIDE OPEN.

I’m not usually abrupt in that type of a situation when I know it’s an accident. But this girl, probably around my age lingered way too long with that door wide open for all to see so I yell at her, “CLOSE THE DOOR! I’m sorry! I thought it was locked! Please close it!!! CLOSE IT! PLEASE CLOSE IT! CLOSE THE DOOR!” Oh my gosh, does this girl not speak English? Hmm.. I’m trying to frantically remember Spanish (to which I failed in high school twice) and draw an unsurprising blank. Isn’t this common sense!? Can she not see and smell what is happening right now!?!?

This girl had to have been on something. Because she just gives me this entitled expression and says, “ummm I have to go!?!?”

I tell her again, “You need to wait! Close the door! CLOSE THE DOOR PLEASE! PLEASE CLOSE THE DOOR! CLOSE THE DOOR! GET OUT!”

Oh Lord help me.

Oh my gosh people. Meanwhile. REAL LIFE IS HAPPENING AND THE DOOR IS WIDE OPEN FOR ALL THE GAS STATION CUSTOMERS TO SEE MY EXPOSED SELF AND MY SCENT IS NOT REMOTELY RESEMBLING IT’S USUALLY BEAUTIFUL AROMA AND OH MY GOSH CAN LIFE POSSIBLY GET ANY WORSE RIGHT NOW.

The door swings wide open and closed maybe 10 times. She keeps repeating herself. Many expletives  are running through my mind but none seem adequate or appropriate to say out loud as I was literally just talking to Jesus like 30 seconds ago. I finish, clean myself up and try to exit the bathroom but she stops me at the door and gets in my face and says…

CAN I HAVE FIVE DOLLARS?!

And at this point I’m just GIDDY! I mean come on, this is COMEDY GOLD.

WHAT IS MY LIFE!?!? 😂

So I respond by saying… I AM SO SICK AND YOU JUST RAN ME OUT OF THE BATHROOM WITH DIARRHEA, NO, YOU CANNOT HAVE FIVE DOLLARS.

😂😂😂😂😂😂😂

But you guys, this entire day was worth it because of that moment. And that story. Because who else can say that they’ve literally been ran out of a gas station bathroom with diarrhea AND heckled for money at the same time!?

I win. 👍🏻

And that, my friends, is my gas station poop story. That was just another average day in my life! What else can you do but embrace the inevitable chaos? God likes slapstick potty humor too I guess, haha.😂.

The struggle is real. But so is Jesus.

The end.

PS.

My acupuncturist Kathleen and I put together a little Spring Seasonal discount for my friends and readers. If you’re interested in trying the full sized Amethyst Healing Biomat to see if it’d help with any of your chronic pain, inflammation issues, or just would like a nice, warm & quiet rejuvenating 30 minute self care treatment, she would like to extend a little discount to you guys! If you call her office which is in a shared wellness center in Canyon Country 661-252-4100 and schedule your first biomat session with Kennealley Acupuncture, mention me (Elisabeth Effinger) or my Chemo Chronicles blog. From March 20 through June 20 you’ll recurve a 30 minute relaxing, warm pain relieving biomat session for $20 instead of $35 and a free 20 minute acupuncture consultation. If you or any of your children or family members struggle with food sensitivities or unexplainable symptoms, she might be able to help you too. She is certified in an allergy elimination technique, she’s actually helped a LOT of kids and families in the SCV area by helping remove food allergies using acupuncture (or acupressure for kids).