The Medical World Has failed

This post should really bother you, if it doesn’t….

 

The medical world has failed horridly for people with chronic illnesses, they have failed us. I as someone who has multiple chronic illnesses I know. Because as the doctors talk to you like you are either stupid or like you are suppose to understand everything. I have health issues and the doctors they act like I’m suppose to put up with being in pain and being sick because they have no fucking clue how to live with chronic illness, when I go to the doctor and I say well I had one good day last week and then I say “I only threw up twice all day.” Yea thats a good day, I’m fed up with doctors treating people with chronic illnesses like its our fault, and oh they do.

in the medical world you sometimes have to wait nine weeks to nine months to a few years to get to see the only doctor who has any clue what they are doing, people are either misdiagnosed or they are called insane and sent home, or better yet put somewhere like an mental hospital when they have a physical illness that needs to be treated by a doctor who will listen.

Living with an illness is hard but personally what’s harder is hearing the words “It is all in your head” “You are already on the treatment” “the medicine I put you on is suppose to help”

My sarcastic answers to these questions are much easier for me to say then really dealing with another doctor and another treatment that didn’t work. The medical world is not helping because out of the 7000 rare diseases there are only 200 that have cures and most of the rare diseases don’t have treatments, theses diseases are unknown and so most of them are undiagnosed so you have a ten year old child whose body parts body out of place and everyone just says she is loose jointed and then they go on and act like this is fine and then when she is 15 her body hurts and other weird things keep happening but what happens when that same girl gets in a car crash and she is rushed to the ER and she is talking and all is fine but then she dies her heart burst because she has EDS and it wasn’t on any of her paperwork and she didn’t even know, because no doctor put all the pieces together, what happens then?

They die, okay lets go back a little, sometimes doctors want to put us into small little boxes when in reality some of us have multiple rare diseases, and we don’t fit into the boxes of us, well the people with EDS might be able to fit into small boxes but not health wise. The medical world needs to admit they failed the people with chronic and rare disease.

It needs to change, we don’t need to be treated like we are insane every time we walk through the door, my stomach when I throw, I just throw up like a gush of water, if you didn’t want to know that then I’m sorry, but it seems the doctors they don’t want to know either, because as soon as they come into the room, they have made up their minds, when are blood test show we are normal, maybe you aren’t doing the right blood test, maybe its you doctors, because every chronic illness person thinks its there fault, and I don’t know where doctors got this idea that everyone is making up their illnesses, but they aren’t. Maybe five people are but most of them aren’t and you need to deal with the fact that maybe you doctor have no clue what is wrong but do tell me that you know something is wrong, tell me you believe me, even if you can’t help me, just be honest with me and say you can’t because as the person with the illness, I’m not just trusting you with my illness, I’m trusting you with my life.

We have illnesses, we aren’t fakers, we are sick, so dear medical world right now you are failing the people with chronic and rare illness/diseases, and we know that we may never get better but we want some help. So please help us.

  As always I might be a spoonie for life but I just hope I’m not always in pain.

Health is amazing!!

when you get diagnosed with anything, you have some options, you can make up your mind that you are going to just “deal” with it. You can try and find a cure. Or you can make up your mind that you aren’t just going to “deal” with it or try and find a cure but you are going to have this disease or syndrome or allergy or other health issues and say “Welcome to my life.” It’s not that you want this illness or whatever to stay and hurt you, but you aren’t just going to “deal”

No I’m not battling any illnesses, I’m living and I’m blessed to have problems, I know I sound like a Pollyanna (overly glad person) but you can’t let something, like a health problem or something like food allergies and things that could possibly kill you.

Tomorrow I could go to the store and not purposefully touch a walnut on my way to the restroom and pass out from anaphylactic shock in the restroom and die. Thats a possibility. Its something that could happen. Life can kill you or it can make you scared to live or you can just live. You can live with anything.

WE as humans can adapt to anything, we will learn to be happy without anything. People die and we have to keep going on.

So you’ve been diagnosed with something that in time will either kill you or you have a possibility of dying from it. Think of it like this

Yesterday morning your great-grandma who was 105 years old passed away, you have to feel sad and go and lie her body in the ground. After you have lied her in the ground you have a strange choice, you can either go on or just sit and cry, so take a moment and remember what life was like with them and then get up and go on.

Walk the miles you want, do what you wanted to do before all this, but you will just have to do it differently, yes everythings going to change but its okay. Its good change. You will miss things you will cry moments of life will fall and you won’t get to be apart of it. But life can be fantastic.

Illnesses, health “problems” are just random things that happen, if you didn’t have this health thing or whatever you would have something else that would make you complain and make your life annoying. This isn’t going to be easy, I mean seriously nothing is easy. Which I personally am happy for.

It took me a long time to really understand how blessed I am to be able to understand people who have things that aren’t a bump in the road no they are a random hill thats really nice to have met along the way. I like my bumps, I like my holes, and I like the things that make my life hard because without them, I wouldn’t be Shay, I wouldn’t be okay with how much change can happen in a moment or a day or just a minute. Life changes everyday we have to deal with things.

 

I’m not right about half the stuff I say, but its what I think and what I think is what I think and no one else can think it for me, so if you don’t like it, then you don’t have to read it or hear it. I’m glad people are all different, I’m glad that we can life at stupid stuff that happens, remember that not everyone is out to get you. And that some are.

So welcome if you are newly blessed with a health issue, because this world is a beautifully artful place with randomness all over your face but it is amazing. Its just amazing.

Fantasticness of Stress

Some people handle stress fantastically, I have never met these people but I hear they are alive and well. I personally handle stress like someone has set me on fire while someone else is shoving rose coloured monkeys in my house which is full of bees. In simpler words, not so fantastically. You might think well maybe you should just learn to handle things better. Some things I handle well. Like death, and sickness, and being in hospitals, just being there for anything. I handle thoses things well.

But things like going into the bank to talk about money, total bee fest. And your boss yelling at you total rose coloured monkeys. I just don’t understand people. Me and humans don’t understand each other. Now give me a cute dog and life is all easy and good. Or  a small child. Things in those things are easy, but other times not so much. So maybe my problem is not stress maybe my problem is people. Huh, this could possibly be very true. I have panic attacks rather easily, or use to.

I haven’t had a panic attack in a while and I’m doing pretty good.. Anyway back to what I was saying is that stress and humans are a part of living a good and reasonable life. Its not easy but its a life. And its one that is worth living. Even through stress can happen daily and things badly can happen at any moemnt. People die and get ill and have bad days and things happen.

So how do you personally handle stress? I might have a panic attack or get mad but its strange, its when I started letting myself be stressed, feel the feelings I need to feel. When my grandma Rosa past a while back. Myself and my parents had gotten to my grandmas house at 4 in the morning and my aunt who took care of my grandma was there at the house and my grandma was at the hospital type place and at 6:45 am we got a call saying they had called 911 for my grandma so on less than 2 hours asleep we went to the hospital and I was stressed and tired, my grandma past that day it was a long emotional day, but how I handled it was strange. I just let myself feel sad. And feel the joy that she was in no pain. I let myself feel the happiness that I was there with her when she past. That I was there when she went from being here to being home. I was happy and sad and felt overwhelmed. But I let myself feel theses feelings and knew that it was okay, to feel this way.

That’s what I think is important in stressful life happenings, so if you lose your job, and if you let yourself feel the emotions of losing your job, the anger and the annoyness and the life over-ness and then tell yourself that you go this. I think thats how stress should be handled and thought about.

That no matter what you don’t know about life, we can live and learn to handle new things, life changes in the flash of a light that can send you into a seizure or it can send you to help someone or it can cause you to feel that the whole life is a hopeless place of worry and horror. But no matter how horrid things seem, learn from the stresses of life and move on. Just keep moving, stop for only seconds and remember, do not forget what has happened to you.

It might be the horror but let yourself remember the wonderfulness and beautifully fantastic things that happened that day in the sun or rain or when you fell and everything changed. Let yourself know how important everything in life really is. No matter how stressful we live life and no matter how easy center times can seem everything won’t always get better but we can make ourselves make things better. So I believe stress is an overload of emotion, don’t forget to feel the bad emotion and the good emotion. Let emotion in. AND feel it…