I apologize, I forgot to put a trigger warning before. I do mention suicide.

As a chronic pain patient/advocate who is newish but oldish to the game, I have learned that the argument of addiction is the reason people in pain are not getting proper pain relief. And if you are lucky to get pain relievers, it comes with a big, red scarlet sticker saying the medication “can cause dependency” on the bottle... well, think about it: if you have daily pain, you will need daily relief if you hope to live a normal life.

But there is a major difference between addiction & dependency:

Addiction is an insatiable desire for the medications immediate “euphoric” effects, aka “chasing the dragon” which typically lasts all day. The patient may end up over using/taking much more or all of the prescribed amount within a shorter time period.

Dependency is when the person needs the medication to sustain a decent quality of life. The patient is taking their prescribed medications as directed so that their body can function properly.

An example of dependency is a diabetic patient needing insulin so that they can live.

The problem is that addiction is in everyone, and everyone has some form of addiction that is waiting to be ignited. It is a basic human condition to “want more” and it can be a result of MANY things including a traumatic experience, or even the dreaded “peer pressure” during a high-school party. It can happen with gambling, sex, exercising, even food… It is a spectrum. And it is up to the person to determine their path.

We have reached a new stage of our awful human evolution. Being thin is a societal influence, something that people will kill them-selves for, and we now have everyday people using the diabetic prescription drug “ozempic” as a way to lose weight.

Diabetic patients who are dependent on this type of drug are unable to fill their prescriptions because of the high numbers of non-diabetic people using this drug for their personal gain- pun noted.

To be blunt or a bit dramatic, we could say they are abusing or misusing a diabetics drug.

A person in pain asking for medical attention is shamed, mocked, reported, harassed, and some extraordinary nurses have even taken it far enough to record their rejected “drug seekers” walking out from the hospitals as they’re laughing in the background.

We have been waiting for justice for what seems forever, and some pain warriors have even decided death is better than endless pain… there are so many. It’s not just pain patients either, an ER doctor Dr. Steve Ortiz committed suicide, because he was unable to help his patients. He was continually harassed by the ones who made these fucking rules. He wanted to bring light to the corruption with his death, leaving behind his wife and children in hopes for justice.

And now pain patients everywhere get to watch our society do exactly what they claim to hate us for: abusing someone else’s medication…

Self reflection is free, and everyone should use it daily.

I was diagnosed.

I was diagnosed with amplified musculoskeletal pain syndrome when I was 15, I had been in pain every day since I was 13. I was diagnosed with functional neurological syndrome and chronic regional pain syndrome shortly after the amps diagnosis.

I was diagnosed with post orthostatic tachycardia syndrome at 16, almost 17 in a few weeks. A day later it was confirmed that I deal with chronic fatigue and extreme brain fog.

I'm going under testing to determine if I have Hypermobility Ehlers Dohlers syndrome, as well as mast cell activation syndrome.

Sometimes I wish I wasn't surrounded by the diagnostic process and wish I didn't have to battle to get diagnosed in the first place.

But then, I sit back and realize that I'm not defined by my diagnoses. I am so much more than my disorder, than my disease.

I am creative, and intelligent.

Compassionate and kind.

Resilient and optimistic.

Beautiful and wise.

When you let yourself be defined by your diagnosis, that's when you lose the battle to it.

new GP

I'm in the process of switching GPs because I'm not happy with the old one, and I had my first appointment with the new one today. After I told them my medical history, they looked at me and said: "How on earth do you manage to work 40 hours a week?

I almost started bawling then and there. First appointment and I already feel like a medical professional finally understands how much of a burden it is to be neurodivergent, have three chronic pain illnesses with lots of symptoms besides only pain, plus all the other chronic shit that I have, and yet have to function like a neurotypical, perfectly healthy human being.

I have a physical next week so we have a baseline to work off of (blood tests, EKG, etc.), but the new GP is already sure that they want me to go to pain rehab to get a condensed, comprehensive picture of my overall health, because only then will I be able to get the proper treatment and also go to the state relief organization to apply for a higher disability rank—which, best case scenario, might make me eligible for financial help from the state so that I wouldn't have to work that much anymore.

I know that all of this won't happen overnight, especially since I started a new job in May and won't be able to take time off for rehab until December (at the earliest), but the thought alone that here there is a doctor who is actively trying to help me, instead of just passively issuing pain meds to me, feels like a huge relief!

Embracing Life with Chronic Pain and Discomfort: A Journey of Resilience

Shaina Tranquilino

December 20, 2023

Living with chronic pain and discomfort can be an incredibly challenging experience, one that affects nearly every aspect of our lives. Whether it stems from a long-term health condition or continues to persist despite medical interventions, the daily battle against pain may seem overwhelming. However, by adopting certain strategies and making necessary adjustments, it is possible to find a renewed sense of hope and live a fulfilling life amidst the struggle. In this blog post, we will explore some practical tips on how to navigate life with chronic pain and discomfort.

1. Educate Yourself:

Knowledge is power when it comes to managing chronic pain conditions. Take the time to research your specific condition, including its causes, symptoms, available treatments, and self-help techniques. Understanding more about your condition will empower you to make informed decisions regarding your healthcare while enabling effective communication with medical professionals.

2. Adopt a Multidisciplinary Approach:

Consulting with various healthcare specialists can provide different perspectives in managing your chronic pain. Consider seeking help from physical therapists, psychologists, nutritionists, and alternative medicine practitioners as part of your overall treatment plan. Different therapies might contribute positively to your well-being by addressing physical limitations, emotional challenges, and dietary concerns.

3. Establish a Support Network:

Living with chronic pain can feel isolating at times; therefore, surrounding yourself with supportive family members, friends, or joining support groups can offer comfort and understanding. Connecting with others who share similar experiences provides an outlet for sharing frustrations and obtaining valuable advice.

4. Prioritize Self-Care:

Self-care activities are crucial for maintaining overall well-being while living with chronic pain. Focus on incorporating practices such as gentle exercises (e.g., swimming or yoga), meditation or mindfulness techniques, adequate sleep routines, proper nutrition, and stress reduction strategies into your daily routine. These lifestyle choices can help minimize pain levels, boost mood, and enhance your quality of life.

5. Pace Yourself:

Accepting that you may need to adjust your daily activities can be challenging but is essential when dealing with chronic pain. Prioritize tasks, delegate responsibilities, and break activities into manageable segments. Practicing pacing ensures that you do not overexert yourself, avoiding exacerbation of symptoms while still accomplishing necessary goals.

6. Embrace Alternative Therapies:

Incorporating alternative therapies such as acupuncture, massage therapy, aromatherapy, or heat/cold treatments into your pain management routine can provide additional relief alongside traditional medical interventions. Experiment with various approaches until you find what works best for you, always in consultation with your healthcare provider.

7. Celebrate Small Victories:

Living with chronic pain means there will inevitably be good days and bad days. Instead of focusing solely on the challenges ahead, celebrate each small victory along the way. Whether it's completing a simple task without excessive discomfort or finding moments of respite from pain through effective coping techniques, acknowledging these triumphs helps maintain a positive mindset.

Living with chronic pain and discomfort is undoubtedly an arduous journey; however, it does not have to define who you are or diminish the joy in your life. By adopting a multidisciplinary approach to treatment, educating yourself about your condition, prioritizing self-care activities and surrounding yourself with a supportive network, you can navigate this path with resilience and hope. Remember that every step forward counts – embrace the journey towards living a fulfilling existence despite chronic pain!

popped my shoulder this morning n it still hurts

I haven't forgotten. Since my last post, my sister boxed up all my stuff from my parents house so she can move in there, and under the cover of night without a word to me, dumped 5, yes FIVE, SUV carloads of my stuff in my driveway. And when I called her out on how shit that was to do without texting me, she sends this whole effing diatribe on how me being on a single income isnt her fault, me being a hoarder isnt her fault, me being LAZY isnt her fault. Apparently, leaving my stuff there when I was forced to move into a TENT was TAKING ADVANTAGE of my parents. I started moving stuff into a storage unit and even though Dad told me not to and that it could stay, I still did move out what I could fit in the storage unit. I continued paying board for MONTHS after I left because my stuff was still there, until Mum DEMANDED I stop. But yes, I'm 'taking advantage'. She decided she wanted to move in by the end of July but renovate first and I told her straight up that I had my first house inspection June 28th and couldnt move anything before then, I was still unpacking and cleaning my new house right up until the moment the agent arrived for the inspection. I even called in sick the night before and worked through the night to have it ready. My fibro and arthritis make me epically slow. I try my best but I cant just try the pain away.

Anyway, she 'gets' that I have pain but that doesnt excuse me 'making other people wait until I can be bothered'. I dont have a problem with her boxing up my stuff. So its out of her way. I dont have a problem with her bringing it over. I have a big problem with her not saying a word and sneaking over in the middle of the night to leave it all in my driveway. The driveway of my rental, on a main street where my landlord could drive past at any time. Just a simple text it would have been fine and she could have saved both our backs by not bringing the stuff that was to go in the trailer for the tip ( a trailer I couldnt fill with my stuff myself because it was still full of HER stuff).

Mum and Dad are putting the house in mine and my sister's names with a granny-flatting clause, so we can inherit the house while they are alive, not have stamp duty or capital gains tax on it, but we have to keep a roof over their heads the rest of their lives. It doesnt have to be THAT roof, we just have to house them. It surprised me when my sister said she wanted to buy ME out because she had always been clear that she didnt want it. But I'm glad because I could no longer live with Dad and wasnt in a position to buy her out. She asked if she could not pay me out until next year when she came back from Japan and I was like "hey thats fine" she was putting a lot of money to the renovations before moving in so why not have her being able to live rent free for a few months to save up for a nice holiday before having to buckle down under a mortgage. See, once the house is in joint names, if one of us is living there, the other is entitled to their half of the rental value. But she's my sister, I wasn't going to ask her to pay rent to me just because my name is on the title. Besides, I knew it would take me a long time to finish getting my stuff out. I even offered to leave the bed, TV, and a couple of cabinets, so my old room would already be set up as a guest bedroom. She never said no thanks, she actually said "ok, cool." Then, when she dumped everything here, it included those things, things she KNEW were never coming here. But I digress. Half rent for my parents' place would be about what I'm paying for rent in the tiny house I'm in now. It would make my life so much easier. I would be able to afford the physical therapies that I haven't been able to in a long time. It would do wonders for my life and my health. But it was money I wouldn't have had anyway, so I could wait another year to get my health back on track, if it made it easier for her. My only sister.

She doesnt think she's done anything wrong. And is now saying she doesnt want to move in there and she'll tell our narcissistic father that I'm coming back. I dont think that apple fell far from the tree. I cant get it through her head that ALL SHE HAD TO DO WAS TEXT ME TO ASK WHAT TO BRING AND WHAT TO PUT IN THE TRAILER INSTEAD OF SNEAKING AROUND. Now, according to my father and her partner, I'm the one in the wrong. Because I said that's shit and disrespectful behaviour and if she doesnt have enough respect for me to send me a simple text message, why should I give up a year of rental income that's almost as much as I earn in a year. Oh that's right, because it's not HER fault I'm poor.

You know what, happy Disability Pride Month to everybody who is always the youngest patient in the waiting room at your specialists' offices.

My back is absolutely killing me!

I've been trying to avoid heatpads, so I've been using a hot water bottle, but it doesn't stay hot enough and this pain is too much!

So I've ordered heatpads, but they won't be here til next week.

I'll just have to deal with it until they arrive. Being in pain 24/7 is beyond exhausting!

what you are is beautiful

Doctors take an oath to do no harm.

Choosing not to help someone…

isn’t that doing more harm?

i don’t know how to describe what the past few weeks of my life have been like. i don’t know if it’s physically possible to put into words just how much i’ve been dealing with.

i’ve been in a terrible flare since the weekend before my birthday. and i feel betrayed.

i feel betrayed by the american medical system, by the lack of compassion i’ve witnessed first hand. and while i’m no stranger to the judgment and gaslighting that’s in the medical community, seeing as i fought for two years for my pain and voice to be taken seriously before i got my amps diagnosis. i fought and fought, went to doctor after doctor, pleaded and begged, and only until something horrific happened to me did they take what i had to say seriously. and i don’t know if it’s the humanity in me or the hope that resides deep inside of me that thought this time would be different, that the doctors would take me seriously, that they would put in the effort or at least give me options on where to go or what to do to help me. but once again i was proven wrong.

i feel betrayed because i know that i can’t live a healthy lifestyle right now, i physically can’t do the things people my age can. and it’s frustrating and devastating because i know somethings not right with me, and i’m pretty sure i know what it is just through my own personal research and communities i’ve found during all of this, but everytime i go to my primary doctor she writes me off. in fact i was in such severe pain i screamed my head off the night prior, was convinced one of my collar bones had gone out of place, and was terrified. but when i showed up the the pediatrician she didn’t even look me in my eye, gave me the fastest work up ever before dismissing my concerns, and telling me and my mom that i should visit a pain clinic place that is a deep rooted sense of trauma for me. for they prescribed me so many medications that messed with my head and gave me horrific side effects. she also told my mom i should see a psychiatrist. basically saying idk what the deal with you is you’re probably just crazy.

the problems i’m dealing with, subluxations, joint pain, rashes, welts on my skin, gi issues, and a lot more i don’t feel the energy to share right now, aren’t symptoms a psychiatrist can help. i’m not crazy. i’m not insane. i’m not making this up. you can watch my collar bone move back into place after it subluxated. you can see the welt on my skin appear after i rub it. you can see the blood pooling happening in my feet and hands everytime i sit down or stand up. i’m exhausted and while my flare is calming down, i’m drained. and it’s disappointing that no doctor cares.

following the visits with my pediatrician, i was in such pain from the car ride and the movement that i was in hysterics that night. the pain in my collar bones and shoulder and neck were unbearable. it felt like my spine wasn’t being held properly together, it felt unstable, if felt terrible. i almost collapsed in the kitchen as i was in so much pain as i screamed and begged for any kind of relief. the next morning we went to the emergency room just to make sure everything was in the right place. and thankfully it was, but the er wasn’t really helpful other than that. they gave me some meds that made me sleepy and that helped distract my mind from the pain, but that was it.

we also reached out again to the cardiologist that’s been helping me with pots. and while the medication he gave me has extremely helped significantly lessen my pots symptoms, he was no help either. in fact we called multiple times over the course of multiple days and received no reply. only to find out, he was planning on sending me to that same pain clinic that i still am severely traumatized by. even though we specifically have mentioned that we cannot go back to that place.

me and my family have been left alone to figure out how to deal with the daily struggles i have experienced without any medical help. we got a shower stool so i don’t faint in the shower, we got a cane so on my rough days when my hips pop in and out i can still somewhat walk around, heating pads and pain patches to try to relieve the pain the best we can, tylenol and advil around the clock.

my body and mind are exhausted from being in a constant state of fight or flight from the pain. this flare was extremely rough. but i survived.

when you’re in so much pain that your body goes into a state of shock, you can only focus on pain. all you can feel is pain, all you can sense is pain, all you can breath is pain. it feels like you’re trapped in an eternal loop of never ending pain. the days seem longer, the hours seem to go on forever, the minutes feel like months. it’s almost impossible for your mind to comprehend that the pain will lessen at some point eventually. this time, it took over 3 weeks for it to lessen. but it did. and i survived.

i’m not alone in the betrayal of the medical community ignorance. my family has been betrayed as they are forced to witness me deal with all of these issues and receive no useful information or help. thousands of others with the same disorders and conditions i have, have been treated exactly as i have. i know this. i know not to get my expectations up when i see someone ina white coat. but i just wish one doctor could care a little about me. because all they see is the chart. they see my medical history, my files. but they don’t see me.

they don’t see how creative i am. they don’t see how compassionate i am. they don’t see how unique and intelligent i am. they don’t see my artwork. they don’t see my stories. they don’t see my voice. they don’t see me.

i wish they would though. because my symptoms and my pain has been limiting my ability to do the things i love. it’s pulled me out of school, which i love. it’s limited my writing abilities, which is my passion. it’s limited my ability to shop, which is my favorite thing to do.

even though i’m dealing with way more than most 17 year olds are, i know one day i’ll be able to say wow i did that. and i got through it. my story is chaotic and unpredictable to say the least. but it’s not over, i won’t let these disorders write my story for me. i will. this chapter is just darker than others will be.

if you take anything from me, don’t write off a person because they look “healthy”. or what society has painted the idea of what healthy on the outside looks like anyways. you never know what someone is dealing with. your words matter. they hold power. they can heal, but they can also damage. please be compassionate to one another.

My sister... I won't get to see her smile ever again...

@barrenclan hi again

Who in the Chain pays taxes?

Twilight - Twilight has helped finance two separate businesses, one of which is right under the castle’s nose. There’s no way he can play the “I don’t have money” card. But he’s also from Ordon, which seems to be its own semi-autonomous region. So I suspect he pays some village taxes but Dusk keeps him from having to pay Hyrulian taxes. She also hired someone to audit MaloMart so it evens out in the end.

Warriors - He definitely pays taxes. Taxes, in turn, pay his salary.

Time - Time does not pay taxes and complains about taxes often. Malon actually is the one paying.

Wild - Pre-Calamity he paid taxes like Warriors. Now, there are no taxes. It’s better this way.

Four - Pays his taxes but sends them with a bill for all the swords he makes the Royal guard which is always, curiously, about twice the amount he just paid in taxes. Picking up the refund is an excuse to see Dot. He uses the fact he pays taxes as evidence he’s an adult when people mistake him for a child.

Hyrule - I am convinced that Hyrule doesn’t really understand money. He does not pay taxes.

Legend - He would not pay taxes except the Hylian equivalent of the IRS has been side-eyeing Ravio’s shop a long time, so to avoid an audit or raid while he’s away, he pays both of their taxes and hates every second. Ravio has never paid taxes in his life and won’t start now.

Sky - You don’t have to pay taxes if you’re married to a goddess~

Wind - In spite of being a literal child he is wanted for tax evasion.