MeadowSystem

I have consistent nervous breakdowns over knowing this is my life. But yet I know many have no idea about the things I'm about to tell you.

Cyclic vomiting syndrome itself is not truely life-threatening but the complications that it creates can be.

I'M BEGGING FOR HELP!!

They do not provide enough accessible treatment. For complications I face from this rare disease.

I am unable to keep a job as I cannot work during vomiting episodes. Lasting anywhere between hours to days. Not including the recovery time needed after the episode is finished.

IT IS DEBILITATING.

Workplaces refuse to hire me when accomodations are asked due to this disability making me "unreliable". If you don't tell your employer and you miss too much work, your let go for being "unreliable". Finding a workplace who will accommodate you and provide consistent wages ... is unobtainable.

Accessing proper insurance coverage needed to make this rare disease manageable is unobtainable due to the plethora of needs we require to have met. Even when on welfare or disability.

Those who are not able to manage the triggers are pushed out of the workforce and forced to fight to get disability. Often unable to obtain federal disability as it isn't "as bad as cancer" as I was told... even with my other plethora of diagnoses that made my doctor feel it was my best course of action.

Not only dose this rare disease have complications of dehydration, damage to the esophagus and tooth decay. Most with this disease also suffer from other conditions (comorbidities), particularly other functional issues. Some of the common functional comorbidities to CVS include migraine headache, chronic fatigue, irritable bowel, gastroparesis, depression, anxiety, POTS and/or other forms of dysautonomia as well as neuromuscular disease include intellectual disabilities, autism, seizures, and/or hypotonia. As well as mitochondria dysfunctions

Incase you don't know mitochondria dysfunctions means your body cannot efficiently turn sugar and oxygen into energy, so the cells do not work correctly. This can affect different parts of the body: the brain, kidneys, muscles, heart, eyes, ears, and others. Organ dysfunction can be a very real possibility. Organ failure is organ dysfunction to such a degree that normal homeostasis cannot be maintained without external clinical intervention.

I have been diagnosed with 8 and counting of the comorbidities. These comorbidities have their own comorbidities that have also been added to my list.

Many doctors are under educated on CVS. Often those with CVS are not properly diagnosed, even with symptoms at a young age.

Many doctors tell us to figure out our CVS triggers to manage the disease. In my case I have so many triggers due to my plethora of diagnoses/comorbidities that my CVS is incredibly difficult, even unrealistic to manage even with proper medical support. (So many overlapping, environmental, situational, medical, life triggers... so many triggers not on this list and still more unknown triggers)

THIS IS MY LIFE! THERE IS NO CURE.

They're are only underfunded small individual research/studies. They have not found a cure. We don't have proper support and thus we suffer. Look at this link ... the lack of information

https://rarediseases.info.nih.gov/diseases/6230/cyclic-vomiting-syndrome

I SUFFER.

My disadvantages have been continually coming to light. My realization I likely won't be able to achieve basic life milestones has been heartbreaking.

Medically assisted suicide is easily achievable even in even minor cases of CVS. While there is little to no support and even less accessibility.

What options do those with this disease have?

Suffer or give up ...

I'd also like to finally note the journey to diagnosis is horrendous. Doctors diagnose cyclic vomiting syndrome based on family and medical history, a physical exam, pattern of symptoms, and medical tests. Your doctor should perform medical tests to rule out other diseases and conditions that may cause nausea and vomiting.

-add on the factors of age, ethnicity, gender, life style, fashion choices, preconceived assumptions ... the list goes on ... the journey to diagnosis often feels unbearable-

If you have read this please comment, I need some validation.

I never understood how others could do such things to animals.

Now I'm not vegan by any means. But I think there is a safe sustainable way for us to do so ethically.

But not even in regards to this it's also your everyday pet owner. If your not taught to raise a child you would get educated. Be it a book, google, YouTube or classes ... to get the best results knowledge is key.

But why would we not treat these pets with the respect and care they need, but also deserve. Not providing for their needs is not okay.

Having animals in environments that are unhealthy for them is cruel. How can they justify putting an animal who cannot speak for themselves in a position where your chancing death.

Beta fish in tiny containers while they require a much bigger tank. Fish with medical issues who die because owners don't know how to properly care for them. Wales at marine land, they swim in oceans great distances and we expect them to live in a tank that is so significantly small they bang their heads on the walls in a suicide attempt. Animals who are so stressed they kill themselves. Starvation, bad living conditions, lack of proper treatment...

We need to do better.

I don't understand how people ever thought the treatment of animals didn't have to be up to par with our treatment of humans. Who decides these mindsets ... honestly look at history.

The thought that people still believe all bully breads are bad and scary. While their some of the biggest teddy bares.

How could you stand by while watching this trauma?

When will this end?

We need to hold those who deal with animals be it aquariums, zoo's, house pets, pet stores and shelter... so many people who sat nothing. How can you not stand up for anyone when something is happing that shouldn't be...

Breathe just breathe.

I feel like a kid waiting for Santa to come. Heart racing, butterlys, not able to do anything but wait.

But how could a poor me do this so, honestly I'm squeezing by ... but I can't push this off. Mentally I am not okay. Gripping to all I have left, carrying the weight because even though I will be uncomfortable/exhausted at times. The good times make it worth it.

Plan, plan everything down to the T you mustn't forget anything. For if you forget you might ruin the trip. Don't panic, plan ... you can't panic when you follow a plan.

Plan A, Plan B, Plan C ... you have no idea what could happen. Make a list, you cannot forget the list. Check it, check it again, and once more for good measure. Pack the car, check again make sure everything made it into the car. How many times does one bag get left behind.

Money, money, money. Have some cash for gas incase the card/machine doesn't work. Have extra for fun, enough to not worry so much and some for emergencies ... budget budget budget ... we can do this right?

Have the car looked over so it's safe to drive, likely an oil change too. Don't need to breakdown half way there.

Top everything and I mean everything up, window washer fluid, oil, coolant, gas ... make sure the car is ready.

Book for one night a pet friendly hotel. But where, should we splurge?

Medication human and animal.

Food/Snacks and animal food/treats.

Clothing ... but what will I wear l, how will I feel?

Emergency road gear who knows what will happen ... plan for everything.

Animal gear ... oh so much my babies!

Bathroom bag, can't be a pig. It's my birthday I want to be happy.

Map it out incase you don't have bars. Don't want to get lost. Anxiety.

Plan for the stops along the way. You'll get ants in your pants, hungry, exhausted, sore throat (from belting every song that comes on.) Everyone needs to pee!

Bedding (pillows a blanket or two)

Back ups, chargers... the list goes on

This can't be all ... details people details!

You can't forget, you cannot miss a thing. For if it isnt perfect there will be more struggle.

Anxiety

Burn out

I want this so bad, why is it so exhausting to be excited? I wish one day I will be able to just go and not stress.

I'm so mad and I just wish life wasn't so hard.

Truthfully I feel like I'm watching myself like a ghost lurking behind my body's every move. The unsettling horror as you know your at home, but when you wake up you feel as if your someplace else. Horrified by how you feel but also knowing the facts and things aren't adding up. The bight sunny room I woke up to wasn't sunny to me. But they told me it was just me and that the sun was out and it's beautiful outside. I honestly don't remember it this way. To me it looked like a filter where the edges we darkend, a filter one would use on snap chat. But this wasn't a sexy picture.

This morning I woke up and thought I must be in a dream because it has been wave after wave of being held down. I couldn't breathe. my biggest fear. After having someone to clarify some pieces, I infact was not dreaming and my life horrors are very real.

I'm doing the best I can but I feel like I've run in the wrong direction. Others tell me how good I'm doing but I don't see it. They see me fighting discrimination with cases and consistent open communication.

My communication has gotten better. I have enforced boundaries to keep myself safe. I begged those to be honest with me, as I cried. How have I gotten better but feel as if this life isn't worth it to me. I'm doing it but it doesn't feel any better.

Panic sets in

The world isn't safe for me. I carry this weight and still have a broken heart for everyone else going through darkness of their own.

Alone I stand

My life is breaking all around me. Fighting to know why I hurt so deeply for things that affect others. I don't fight for myself, I fight for others.

Begging anyone to tell me how to fix it.

We weren't prepared for being an adult in school. Who do I turn to? Who can help me?

I'm in chronic pain. The doctor thinks it's not so bad. Take a Tylenol.

I do have pain, there are days my body hurts so badly I pass out. Times my body has failed me leaving me stuck on the ground, mentally spinning ... later diagnosed with Fibromyalgia. My pain is real! My chronic pain often sitting at a 4/10.

All of the times I was told it isn't so bad, it's growing pains, your too sensitive, your too young to be in pain.

But of course that cannot be all ... since I'm not spicy enough.

The position I am in this country is not allowing for me to be better.

DID, PTSD, BPD, CVS, IBS, GAD, agoraphobia, Severe depression with extreme depressive episodes, Fibromyalgia, Arthritis, Soliosis, Autism, ADHD, Severe asthma, Bulimia, Binge eating disorder, more then likely EDS and who knows what else or if I have forgotten... add symptoms of disorders and side effects of medications.

Finally at this point trying to cope with all these disadvantages in a world like we have today.

This world of restrictions is incredibly ablesit. Getting fired for being sick to often, but I cannot get the help I need as I don't have medical coverage or financial stability.

I ask my parents why they brought me into this world.

"We wanted to have you, no matter how you came. We love you sweetheart."

Thinking about how I said to my therapist I wish I was aborted.

I grieve in my home alone for the system lied and failed me.

People can be incredibly horrible. The lies told in school have sheltered me while young, but when you grow up your told to figure it out. But who can I ask for help? How do I navigate how to survive?

I ask my parents, who do I talk to? Who can help me in this world where these disadvantages of mine prevent me from being able to work. The lack of work preventing me from having financial stability. The lack of financial ability to pay for the proper healing. The lack of financial ability for medical insurance. If only I could have the help I need to heal and cope in this world today.

Who do I talk to? How do I navigate these struggles?

My parents reply "I don't know".

What a slap in the face. You wanted me no matter how I came, but you were unable to care for me. My health on the decline.

How can I survive? Unable to work, but also unable to get the needed help to get back to work. My parents remind me of all the money they spent helping me. But I didn't ask for this, I had no choice.

Others in my family say at least your parents have helped you...

Mom, dad, I'm in debt. I have been placing my $500+ monthly medical needs on my credit card.

My doctor said to take 4 months off then we would have it controlled enough to work... it's been almost 4 years now.

Still fighting

But momma said "I love you, God only puts you through trials you can handle. It's all for a reason."

If he loved me why would he test me, watch me in pain and struggle with no life raft in this world who is at war.

Bang

Silence. Carry everything you can. Drag it if you have to. Accomodations are only given to the financially blessed.

War

Quietly strangling the weak in their sleep. Only the strong will survive. Strength alone isnt enough. But money can buy all that is needed to win this war.

Bodies pile up, king of the hill becomes reality.

But how could you? How could stand so tall when others are being crushed below?

Others stand with the king. If they are worthy the king will give you all you need. But worthy stops when you are poor, disabled... different.

This isn't the life we were told. Growing up learning of our great country.

Your obligated to be here for those who love you ... but there is this lump in my throat feeling that just won't go away...

Why am I being told love is pain and that's okay because it's what you make of it.

The staggering disadvantage of being a person who struggles with disabilities...

I guess it's just been really bothering me that some people (the rich and greedy) can just watch others at this disadvantage regardless the reason, often at no fault of their own. Not have the same privilege, just because they were born to this family, with these traumas, financials, support or lack their of.

All because you are different, be it skin colour, gender, family wealth, trans, poly, disabled, unable to function in this world that has pushed for so many rules. We have changed, judged, decided so many things to benefit only one group of people... so many things we are not able to change as these disadvantages of your own.

Knowing we could be preventing so many problems if people could work together... if school was free and you could make a good living. I'm not talking just making ends meet or being able to enjoy some things... but to be able to live a good healthy life where you are happy (not greedy but not in a position where you can't enjoy life because your not up to this dumb bar in a world where the rich survive and the poor stay poor.)

Could you imagine being able to do what you want to do, be it building homes, gardening, inventing, caring for others... to be a benefit to our society doing what makes you happy.

Wouldn't that be worth equity over equality?

Knowing if something happened where you get hurt or struggle mentally or want proper education or need health care (and so on)... that you have the same opportunities and disadvantages doesn't mean your only option is assisted suicide...

Are we that selfish and greedy?

He was laid off today. The largest part of our income is gone and I still cannot work.

Disabilities I have suffered with worsening over my lifetime. The pain I feel from watching my healthy siblings conquer the world while I sit here in pain. The anger I feel that I am at such a disadvantage.

I'm doing all I can but it isn't enough.

Everyday I just say "give it one more chance". It can't be all this bad. Right?

But then I watch this disadvantage take over my life. With finacial barriers at ever stop. I can't get better even if I wanted to.

He sits next to me. Defeated.

We have taken turns holding eachother up. Through think and thin. Giving all we had to not only survive but I keep setting us back. My heart pours out and I take in those who need help.

I may have nothing to give but I have suffered more for those I love. Unfortunately love can only go so far when your disrespected by those you try to help.

Putting my own needs on hold.

I was once homeless. I too know how it feels. I too am in medical debt though I live in a country with "free" healthcare.

Who is to suffer. Without his insurance coverage through work we will struggle to pay for his medications for his disabilities.

We will be okay. We have to be.

But life is much harder than I'd wish on anyone else. Knowing many never experience this pain of disadvantage. But yet the ones who do are more open, empathize and care for our own.

We are all doing the best we can.

Midnight thoughts...

*trigger warning*

Growing up I always thought I'd be working hard, owning a home and having children by now.

Today it occurred to me I might never have my "dreams" come true. I may never have a child nevermind children. I may never own a home. I will miss out in the many joy's I was told about growing up.

Stop thinking about the future they say. You'll only stray away. Caught up in the "what if's" and "could be's."

But what do I have to live for now, what do I have to look forward to.

Broken body and mind.

Disabled

Treated like gum on the bottom of the most expensive shoes.

Homelessness

If your not able to "keep up" in this life you'll be left behind. No one will remember you, they sweep it under the rug.

Silenced

Hide in the shadows of our great country. You must reach the bar. The bar set so high, add the disadvantage of disabilities and kiss your life goodbye.

Mask

You cannot show weakness, but show too much strength and they will knock you down.

Down

Down

Down, until your voice is nothing more then a small bird. But when they close their windows the birds melody is no more.

Loneliness

Punished for doing anything differently even if it doesn't negativly affect someone else.

Struggle

Do not speak truth to those around you. If they don't know the truth they won't believe it. You only need to work harder. If you lack money to survive be better.

Darkness

Unknown to you or I. Don't go into the spotlight or the riches might consume you or blind the world from you.

Where to go from here?

How do I make things better with the world stacked against me. How do you live in a broken life while suffering.

Knowing that the lack of accessibility and lack of family wealth will decide my fate for me.

It is out of my control.

You were never given a choice. Without power and wealth you are at the hands of others.

Why do you treat disabilities this way?