A.S. Face 2205: Aerilyn

My name is Aerilyn and I was diagnosed with AS in 2014. It took 8 years of medical barriers to get a diagnosis. I’m a University Graduate, Child and Youth Practitioner, and a Disability Consultant. I want people to know that there is no shame in having Ankylosing Spondylitis and that it’s ok to ask for support whenever it is needed and that it’s ok to use whatever assistive device whether it be a cane, rollator, wheelchair, ect because it can improve your quality of life significantly. Be patient and kind with yourself, and you are your own best advocate.

Ontario, Canada

4 Responses to “A.S. Face 2205: Aerilyn”

Thank you for believing in me and being a part of Faces of AS.
Cookie

Cookie Has A.S. said this on May 30, 2020 at 12:37 pm | Reply
- Thank you for sharing my story, it means the world to me
  
  Aerilyn said this on May 30, 2020 at 3:26 pm | Reply
Hi there Aerilyn i noticed in your story that you are a Disability Consultant. Maybe you don’t know the answer but I’m wondering why I can’t get disability. I’m 60 years old now so I’m thinking it’s basically to late. I worked on and off in my younger years. I live in Wisconsin and don’t have enough work credits to qualify for disability because they changed the laws. My body has been a host for multiple ailments. At first doctors thought I had juvenile arthritis. Through the years I was passed around to many different doctors. Back then they didn’t know what A.S. and U.C. was. Many misdiagnoses. Bone cancer that did a big time number on me.
I could go on and on. I’ve tried 3 times to get disability and the 2nd time I was told….”oh just wait till your 62…..it’s only 7 more years (at that time) ! “ I actually have no right hip joint and walk with a cane. I have 2inches added to my right shoe to even my balance out. I have other ailments that knock me on my a•• and put me in bed for days. Sick as a dog. No way could I ever work feeling that sick. I’m lucky if I get broth, crackers or 7up to stay in me.
I’m going to stop complaining and maybe this is toooo much info for you. Just because A.S. doesn’t look like a broken arm or something that can actually be seen , doesn’t mean it doesn’t exist. I just tried last November for disability. My doctor is behind me 💯 percent.
Turned down again and she was really dumbfounded. What do people do that get into some kind of accident and then receive permanent disability ? It would be many pages long if I went through with you what’s all wrong with me. My husband and I live on his retirement plus he has to work basically till he dies because we are on such a short income.
Do you know why people with A.S. and other ailments can’t receive disability ?
I’m sorry you have it and I sure hope you live a much happier and fulfilled life than I have.
I feel like I’ve just been a guinea pig for the doctors with all my different issues.
Even if you don’t know, that’s ok.
I just thought maybe there was a loop hole I was missing.
I know it’s not easy. I know MANY people don’t understand it. “Well you look just fine “ is a response I heard many many times in my early years 👎. I truly hope there is a Heaven where there’s no more suffering.
Take care. Remember your not alone. You could be my daughter and I sure hope you don’t have to suffer through what I have.
☮️ Audie

audieann said this on June 2, 2020 at 11:42 am | Reply
- Hi Audie, I am so sorry that I didn’t see your message until now. I am so sorry you’ve been turned down again. i believe you are in the United States and unfortunately I only know Ontario, Canada’s guidelines and how to get onto ODSP. But I see you and I hear your pain and you are valid. Mostly from what I know of in the USA is that you need a lawyer to get on to Disability. I am so sorry you are suffering and I hope you know that you are not alone either. Please reach out anytime. You can reach me at oarcidservices@gmail.com
  
  Oarcid Services said this on May 26, 2022 at 12:43 pm | Reply

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