Dear Friends,
You probably don't understand why I told you that I am Autistic. You probably don't get why I told you that I have issues with comprehending people or certain things.
Here's the thing: I did it because "comprehension" is what gets me into trouble. I tend to lose friends because of it. It can cause issues with communicating and understanding things in general. I tell people so they are warned that I don't do these things on purpose, it's just a part of who I am and I have to work around it but it's very hard to do this. I do my best, but sometimes my best isn't good enough.
I get things mixed up, sometimes I don't even know I do it till it already happens and the person has walked away. I ask that you please try to be patient with me. I am trying. Please remember that it's not you, and it's not entirely me- it's how my brain works. Unfortunately, there's not much that I can do to change it but I ask that you please be patient with me. I try to be patient with myself but it's harder when my friends aren't with me. I am sorry for whatever happens, I am deeply sorry ahead of time but it doesn't mean that I am not trying to be a good friend.
Sincerely,
Your Autistic Friend
Saturday, August 27, 2016
Saturday, August 13, 2016
I am Determined
I am determined...
I am determined to not let my illnesses control my life. Oh how difficult it is! Its got a tight grip on my life and I have not given it permission to have such a grip! But what am I supposed to do, when I must think about how something may affect me. How a trip to the store may make me hurt, how working might make me lose the very thing that allows me to have my medication, how I can't take classes on a college classes, I don't want my illness to control my life--- but how can you not when so much is at stake? No, I don't allow it to control how I feel about myself, I don't allow it to destroy certain opportunities. I hate that I have to all it to control what I do on a daily basis, that I have to question everything I do. But what can you do when the choice is hurt or not hurt?
I am determined to not let my illnesses control my life. Oh how difficult it is! Its got a tight grip on my life and I have not given it permission to have such a grip! But what am I supposed to do, when I must think about how something may affect me. How a trip to the store may make me hurt, how working might make me lose the very thing that allows me to have my medication, how I can't take classes on a college classes, I don't want my illness to control my life--- but how can you not when so much is at stake? No, I don't allow it to control how I feel about myself, I don't allow it to destroy certain opportunities. I hate that I have to all it to control what I do on a daily basis, that I have to question everything I do. But what can you do when the choice is hurt or not hurt?
Thursday, August 11, 2016
To the Man Who Verbally Attacked Me at the Local Store:
Dear Store Manager,
About a month ago, my service dog, caregiver and I walked into the store you managed. We only went in there to get some much needed items as I had just been through a small kitchen fire the week prior and was staying in a hotel. I had no food for my dog nor I, and very little money so we went to your store. As I was in there, my service dog got very sick and made a mess.
I honestly didn't know what to do nor did my caregiver as she was new. Sir, I am Autistic and suffer from PTSD and Autoimmune Diseases/Conditions. I was so stressed that I froze. I disassociated from the world we live in. I decided that getting the food and hygiene items was more important than asking for help from you, so quickly and quietly I bought my things and left your store and for that I am deeply sorry about.
I know I shouldn't have just left the mess, I know that I should've asked for help but it was impossible for me to ask. Being Autistic and having PTSD, it makes it hard to do such tasks when you are stressed as it is. I didn't make anymore of a mess and I didn't make a scene, I just bought my items and left.
But you decided it best that you follow me to my car, wait till I was in the car, and verbally assault me. When told what was really happening, you didn't care. You made it known by telling me so then banning me from your store.
Sir, do you really understand what you did? Do you have any understanding of what you have done?
No? Let me break it down.
Someone who was already distraught, someone who felt that nothing was going right, who really didn't know which way to turn, who was sick with worry, anxiety and strife, who's PTSD was badly triggered by the fire, walked into your store to get items like a tooth brush and food because you're a cheap store and she could afford it.
She didn't realize, however, that her service dog was sick. He isn't a robot, she can't just say HEY don't be sick! She didn't realize this and when he got sick, she did her best to not make anymore issues. So, embarrassed, scared, and already disassociating, she spent money her parents gave her AT YOUR STORE and left.
You decided that you knew better than others, whether you were wanting to impress or you thought you were better than her, you rushed out and yelled at her. Pinning her in her own car with no way to get out. You called her names, you demeaned her, you humiliated her in the middle of the parking lot, you not only triggered her Autism but you triggered her PTSD and thus putting her in a worse situation than before. She did nothing but apologize and say that she was sorry for not asking-- but could you blame her? She's already scared to death and you just made it worse, making it to where she may never want to ask for help again. By the time you were done, you tore apart what little left of her world she had. She did nothing to you, yet you attacked her. Furthermore, you then banned her from your store once you heard she was disabled. She cried and you laughed at her pain, how evil can you be?
I don't care what your position is at the store, I don't care who you're trying to impress, I will say this: you had no right to attack me and do what you did. I apologized, and although I should have asked for help, I couldn't. I am still working on that part of myself. I am still trying to change it, but you put me further behind in the process.
I am sorry I had to call your company, what makes me feel even worse is that you had to learn the hard way by losing your job that you can't do this to people. I truly hope you have learned that no matter how upset you are, it's not ok to attack someone and even moreso not ok to discriminate a disabled person. I feel horrible at how this turned out, at the fact you were fired but I couldn't stand by and allow this to happen. What if the next person wasn't as strong as me? What if at the moment they had decided to give up on life? And you did that to them? What if the next person didn't have a voice to speak up against you and you kept doing this for years? You needed to learn and I am sorry that it had to be this way. I do not like to see people punished, but if I stood around silent worse may have happened.
I hope next time this occurs both you and I know how to handle it better, I know I am working on it and I hope you are as well.
I learned a very important lesson from this situation though, that you can't be quiet about these things. You can't just sit there and ignore what happened because then the world will never change. As my therapist says "the squeaky wheel is never ignored!".
Sincerely,
A Disabled Advocate
About a month ago, my service dog, caregiver and I walked into the store you managed. We only went in there to get some much needed items as I had just been through a small kitchen fire the week prior and was staying in a hotel. I had no food for my dog nor I, and very little money so we went to your store. As I was in there, my service dog got very sick and made a mess.
I honestly didn't know what to do nor did my caregiver as she was new. Sir, I am Autistic and suffer from PTSD and Autoimmune Diseases/Conditions. I was so stressed that I froze. I disassociated from the world we live in. I decided that getting the food and hygiene items was more important than asking for help from you, so quickly and quietly I bought my things and left your store and for that I am deeply sorry about.
I know I shouldn't have just left the mess, I know that I should've asked for help but it was impossible for me to ask. Being Autistic and having PTSD, it makes it hard to do such tasks when you are stressed as it is. I didn't make anymore of a mess and I didn't make a scene, I just bought my items and left.
But you decided it best that you follow me to my car, wait till I was in the car, and verbally assault me. When told what was really happening, you didn't care. You made it known by telling me so then banning me from your store.
Sir, do you really understand what you did? Do you have any understanding of what you have done?
No? Let me break it down.
Someone who was already distraught, someone who felt that nothing was going right, who really didn't know which way to turn, who was sick with worry, anxiety and strife, who's PTSD was badly triggered by the fire, walked into your store to get items like a tooth brush and food because you're a cheap store and she could afford it.
She didn't realize, however, that her service dog was sick. He isn't a robot, she can't just say HEY don't be sick! She didn't realize this and when he got sick, she did her best to not make anymore issues. So, embarrassed, scared, and already disassociating, she spent money her parents gave her AT YOUR STORE and left.
You decided that you knew better than others, whether you were wanting to impress or you thought you were better than her, you rushed out and yelled at her. Pinning her in her own car with no way to get out. You called her names, you demeaned her, you humiliated her in the middle of the parking lot, you not only triggered her Autism but you triggered her PTSD and thus putting her in a worse situation than before. She did nothing but apologize and say that she was sorry for not asking-- but could you blame her? She's already scared to death and you just made it worse, making it to where she may never want to ask for help again. By the time you were done, you tore apart what little left of her world she had. She did nothing to you, yet you attacked her. Furthermore, you then banned her from your store once you heard she was disabled. She cried and you laughed at her pain, how evil can you be?
I don't care what your position is at the store, I don't care who you're trying to impress, I will say this: you had no right to attack me and do what you did. I apologized, and although I should have asked for help, I couldn't. I am still working on that part of myself. I am still trying to change it, but you put me further behind in the process.
I am sorry I had to call your company, what makes me feel even worse is that you had to learn the hard way by losing your job that you can't do this to people. I truly hope you have learned that no matter how upset you are, it's not ok to attack someone and even moreso not ok to discriminate a disabled person. I feel horrible at how this turned out, at the fact you were fired but I couldn't stand by and allow this to happen. What if the next person wasn't as strong as me? What if at the moment they had decided to give up on life? And you did that to them? What if the next person didn't have a voice to speak up against you and you kept doing this for years? You needed to learn and I am sorry that it had to be this way. I do not like to see people punished, but if I stood around silent worse may have happened.
I hope next time this occurs both you and I know how to handle it better, I know I am working on it and I hope you are as well.
I learned a very important lesson from this situation though, that you can't be quiet about these things. You can't just sit there and ignore what happened because then the world will never change. As my therapist says "the squeaky wheel is never ignored!".
"You don't just give up. You don’t just let things happen. You make a stand. You say "no." You have the guts to do what's right when everyone else just runs away!"
~Rose Tyler (Doctor Who; Steven Moffat~
A Disabled Advocate
((GIFS FOUND ON GOOGLE))
Thursday, August 4, 2016
A Letter to the Doctors Who Don't Care...
Dear Very Misled Doctors/Therapists,
Hello! Your clearly suffering patient here! I am writing this letter because you need to hear me out, you must listen! I am writing this because I PAY YOU to listen and help. I don't pay you to ignore me, thus making my health worse. I don't pay to be told lies or be told sugar coated twisted words. I pay you to find whats happening to me.
If I tell you HEY I'm having issues and need to talk, or HEY the pain is getting worse, can we do something about it? or HEY I need assistance moving, can I have *insert device*? HEAR ME OUT. Don't just ignore me! I am doing my best to live my life like any young adult, but being told that you can't or won't help me stops me and makes it harder to do so.
I need your help. We must work together to make things better, we must work together to find answers. A Doctor, Patient relationship must be both sides working together not just one doing it and the other not listening. Things won't get accomplished unless we both put our heads together and find the answers, I can't do it on my own but you can't either. You must put your pettiness aside and hear me out. If I say that the meds aren't working, then lets find another. If I am fearful of lowering something without adding another, please hear me out. Most likely there is reason to that fear. If I tell you that my pain is horrible, please believe me. Just because I am not crying, doesn't mean it's not there.
All I ask is you to listen. That's it. Have a heart. It's not all in my head (my pain) and I'm not faking (my pain and PTSD). Please hear me out and help me. It's hare as it is to deal with this, but even harder when those who are hired to help me won't.
Sincerely,
A chronic Illness Patient
Hello! Your clearly suffering patient here! I am writing this letter because you need to hear me out, you must listen! I am writing this because I PAY YOU to listen and help. I don't pay you to ignore me, thus making my health worse. I don't pay to be told lies or be told sugar coated twisted words. I pay you to find whats happening to me.
If I tell you HEY I'm having issues and need to talk, or HEY the pain is getting worse, can we do something about it? or HEY I need assistance moving, can I have *insert device*? HEAR ME OUT. Don't just ignore me! I am doing my best to live my life like any young adult, but being told that you can't or won't help me stops me and makes it harder to do so.
I need your help. We must work together to make things better, we must work together to find answers. A Doctor, Patient relationship must be both sides working together not just one doing it and the other not listening. Things won't get accomplished unless we both put our heads together and find the answers, I can't do it on my own but you can't either. You must put your pettiness aside and hear me out. If I say that the meds aren't working, then lets find another. If I am fearful of lowering something without adding another, please hear me out. Most likely there is reason to that fear. If I tell you that my pain is horrible, please believe me. Just because I am not crying, doesn't mean it's not there.
All I ask is you to listen. That's it. Have a heart. It's not all in my head (my pain) and I'm not faking (my pain and PTSD). Please hear me out and help me. It's hare as it is to deal with this, but even harder when those who are hired to help me won't.
Sincerely,
A chronic Illness Patient
Tuesday, August 2, 2016
Take Advantage of What You're Given
One cold Oregonian morning of February 2015, I woke up to my entire body feeling heavy because of this, I couldn't move to get up out of bed. My sister/best friend had to pull me out of bed, strip me and throw me in the tub with epson salt. It helped a little bit, I was fortunately able to move but it was painful and slow. This was what started my journey to finding an answer.
I have had joint pain, tolerable, since I was young. I can't remember not having it. The doctors just shrugged it off and thought I was faking. It was whatever but when this happened to me, I knew something was wrong so I immediately went to my doctor.
The first misdiagnosis I received was fibromyalgia but I was going downhill way to fast. They ran tests and poked me a lot. God they loved my blood! Haha! Anyways, when my half sister told me she had the same thing happen and they found out it was lupus, I told my doctor and she immediately sent me to the rheumatologist.
The man was heartless, or otherwise just plain rude. He never listened to anything I said and continually put my health at risk. Although, he claims to have found Rheumatoid Arthritis, I think there's other things wrong. I asked my doctor to send me to our local and best teaching hospital in Oregon and now I am waiting on my appointment.
I have gone from needing no assistance to a cane to a walker in a year. I have gone from needing only some help, to a caregiver to help me clean and get errands done. I am now immunosuppressed -- don't have a proper immune system now.
There's days where I can't get out of bed, where I can't leave my house because I need the bathroom close. There's times where I can't eat. Times where I can't dress. Times where I can't shower.
People take so much for granted. They call these big answers from God blessing but what they fail to realize is, the small things are the best blessing. Everything from waking, to eating, to being able to walk without assistance is a blessing. One day, you can be like me and wake up with those blessings gone, regretting that I didn't think that they were indeed blessings.
Don't be like me. Don't be the person who realizes when it i too late.
I have had joint pain, tolerable, since I was young. I can't remember not having it. The doctors just shrugged it off and thought I was faking. It was whatever but when this happened to me, I knew something was wrong so I immediately went to my doctor.
The first misdiagnosis I received was fibromyalgia but I was going downhill way to fast. They ran tests and poked me a lot. God they loved my blood! Haha! Anyways, when my half sister told me she had the same thing happen and they found out it was lupus, I told my doctor and she immediately sent me to the rheumatologist.
The man was heartless, or otherwise just plain rude. He never listened to anything I said and continually put my health at risk. Although, he claims to have found Rheumatoid Arthritis, I think there's other things wrong. I asked my doctor to send me to our local and best teaching hospital in Oregon and now I am waiting on my appointment.
I have gone from needing no assistance to a cane to a walker in a year. I have gone from needing only some help, to a caregiver to help me clean and get errands done. I am now immunosuppressed -- don't have a proper immune system now.
There's days where I can't get out of bed, where I can't leave my house because I need the bathroom close. There's times where I can't eat. Times where I can't dress. Times where I can't shower.
People take so much for granted. They call these big answers from God blessing but what they fail to realize is, the small things are the best blessing. Everything from waking, to eating, to being able to walk without assistance is a blessing. One day, you can be like me and wake up with those blessings gone, regretting that I didn't think that they were indeed blessings.
Don't be like me. Don't be the person who realizes when it i too late.
Find the Person Who...
Find the person who compliments you. Who knows you are a beautiful mess but loves you cracks and curves and all. Find the person who understands you aren't perfect, but loves you anyways. Find that person who supports your choices, no matter what they may be and respects them. Find that person who fits with your type of weirdness. Find that person who, when given a challenge, takes it. Find that person who can be at your bedside when things go bad. Find that person who doesn't give up when things get rough, when you fight and think that things can't possibly be put back together-- find that person who picks up the glue and tries. Find that person who helps you with the hurdles in your life. Find that person who you can talk deep, intimate conversations with and learn from. Find that person who you can grow with.
DON'T find that person who doesn't compliment you. Don't find that person who yells at you and blames you. Who hurts you whether that be physically or mentally.. Don't find that person who tears you apart and makes you cry. Who doesn't support your choices, who controls your life, who uses jealousy as an excuse to betray you. Don't find the person who thinks only of theirself.
Find the person who brings out the best in you and helps you blossom.
DON'T find that person who doesn't compliment you. Don't find that person who yells at you and blames you. Who hurts you whether that be physically or mentally.. Don't find that person who tears you apart and makes you cry. Who doesn't support your choices, who controls your life, who uses jealousy as an excuse to betray you. Don't find the person who thinks only of theirself.
Find the person who brings out the best in you and helps you blossom.
Monday, August 1, 2016
When You Feel that You Aren't Enough...
Sometimes when you have a chronic illness, you feel like you aren't enough. Some of us have to have a caregiver, others our spouses help ton out, some of us can't even get out of bed in the morning or do what we wish to accomplish. At times, we feel like a burden to society rather than a normal human being. We feel like we take more than we should.
That's the thing, we are telling ourselves this. Most of the time, our family or those around us understand and help because they care OR if you have a caregiver, they are paid to help you-- so don't beat yourself up over it. I know that is easier said than done and that it can be hard when you've gone from independent to needing more help but THAT'S OK. You are still human, you are still worth it and you deserve to be treated as such.
We are own worse enemies. Half the time, we are the ones who treat ourselves as inhuman. We are the ones who think bad about ourselves. WE NEED TO STOP THIS THINKING. We need to realize that just because we need extra help or have a hard time doing things, that doesn't mean we're anything less than what we were before. We must push ourselves to see the beauty in things before the bad, beauty in ourselves. We need to see what we can do and grow on that than focusing on the things we can't do.
We are beautiful majestic human beings and we deserve to see ourselves in that light. You deserve it. You are beautiful, unique and awesome. You deserve so much in this world-- allow it to happen.
That's the thing, we are telling ourselves this. Most of the time, our family or those around us understand and help because they care OR if you have a caregiver, they are paid to help you-- so don't beat yourself up over it. I know that is easier said than done and that it can be hard when you've gone from independent to needing more help but THAT'S OK. You are still human, you are still worth it and you deserve to be treated as such.
We are own worse enemies. Half the time, we are the ones who treat ourselves as inhuman. We are the ones who think bad about ourselves. WE NEED TO STOP THIS THINKING. We need to realize that just because we need extra help or have a hard time doing things, that doesn't mean we're anything less than what we were before. We must push ourselves to see the beauty in things before the bad, beauty in ourselves. We need to see what we can do and grow on that than focusing on the things we can't do.
We are beautiful majestic human beings and we deserve to see ourselves in that light. You deserve it. You are beautiful, unique and awesome. You deserve so much in this world-- allow it to happen.
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