My story psoriatic arthritis story starts in elementary school. In elementary school I was the tallest girl my age. I physically matured faster than anyone in my grade. Around this time my knees started to swell and become painful. My pediatrician chalked it up to growing pains at first. When it persisted for most of my elementary years he later called it osgood-schlatter disease. There was another student in my elementary class who said he had the same disease. We would often sit on the sidelines of gym class together, unable to play due to pain. Except when recess came around he was able to at least go play. I on the other hand sat and watched from the bench. Each month the other student spent less and less time on the sidelines and started to participate in gym more; however my pain was increasing. The pediatrician kept repeating that it would go away when I stop growing. I knew this pain was abnormal. The other kids would isolate me calling me a fat retard who had dandruff. I was teased mercilessly. At school by my peers, and at home by my sister. My mom bought every dandruff shampoo available but nothing could control the itch and the quarter sized flakes in my hair. Eventually this warranted a trip to the dermatologist. By this time I was in middle school. The dermatologist biopsied a piece of eyelid and sent it to the lab. I had psoriasis all along, not dandruff. I was given cortisone shots on the scalp and some topical steroids to apply to the scalp and eye area. The psoriasis proceeded to spread despite the topicals. The physical pain also increased. In the 8th grade my mom happened to mention my ongoing pain to the dermatologist. She suggested that it could be psoriatic arthritis and that I should find a rheumatologist. After searching online for a pediatric rheumatologist my mother found one at the reputable Schneiders Childrens Hospital in New Hyde Park, NY (later renamed Cohen). After they ran tests they confirmed my labs were abnormal and showed extreme swelling. They confirmed what my demonologist guessed, that I had psoriatic arthritis all along. They put me on multiple medications which dimmed the pain a bit, but not enough. At around 14 years old I confessed I didn’t feel the treatment was working because I was in such severe pain in multiple joints. They gave me cortisone shots in my wrists, ankles, knees, toes all in one short stay. I was later wheelchair bound for almost a month. The steroids worked somewhat but not enough. As I voiced my pain they told my mother that I needed a psychiatrist because I am making up the pain. Even though my labs were still elevated beyond normal capacity. They also told me that I would not make it past age 30 because of all the mediations I have been on and will be on. I felt so depressed and really believed that maybe I was making it all up like they said. However my mother always believed me. After they flagged my mother for child abuse, I begged my mom to find another rheumatologist. Because I was underage it was difficult to find a rheumatologist. The only pediatric rheumatologist in our area at the time had been the one I was seeing. My mom pleaded with a rheumatologist who only treated adults to take me on as a patient. I was 16 that time. After pleading with the doctor she finally agreed to take me on. However we had to pay out of pocket. My mother agreed. After reading my labs she said my pain was justified. And switched me from Humira to Enbrel, and changed my methotrexate to a different nsaids and pain relievers. I had already changed medications numerous times from when I was 14. This doctor urged me to start remicade however I refused because I was too young to start such a heavy medication despite the pain. During the school year I woke up one morning to get ready for school unable to lift my head. I could not lift my finger or wiggle my toes. I felt completely paralyzed. My boyfriend at the time asked me “what the hell is wrong with you just lift your head!”. He didn’t understand if I could have I would have. My mom was an emergency room registered nurse at the time. Therefore she was the queen on calm. I cried for her to come in my room explaining that I could not move. She and my father made a make-shift gurney out of my sheet. He then lifted me up and brought me to the couch. I remember crying on my father’s shoulders telling him to stop, that he was hurting me as he carried me into the living room. He wasn’t even touching me and I was in so much pain. Because of the pain and my absences from school my school demanded me be homeschooled. I was so upset. First my mobility now my social life, and normality. I hated being homeschooled. My friends stopped visiting, and eventually stopped talking to me. I was devastated. However my mother and I forged a bond during this time. She became someone I could look up to as a mother, and call upon as a friend. Because I didn’t leave the house and wasn’t fond of television, I threw myself into my studies. I graduated with and overall GPA of 3.8 and got accepted into multiple colleges with partial scholarship. The year prior my academic advisor told me that my grades weren’t good enough to achieve what I wanted. Since 2011 I have been attending college. At first I worked full time and went to school full time. I pushed myself to try to lead the “normal” college life. The next year I had to take medical leave because I had pushed myself too hard. When I returned the next year I decided it was best to go to class part time. Since I dropped to part time, my scholarship got taken away. Since then I have fought to get disability benefits and use that money to help pay my parents a fraction of the bills and also for my college tuition (curse sallie mae!). I am still working towards my major which is special education. Hopefully I can help children who have faced hardships and make their experience a tad brighter. Unfortunately because I’m part time I feel as if I will not graduate until I’m old and grey. I’m still in pain daily; I struggle with the exhaustion that it causes me. Sometimes I will sleep twenty hours or more. I’m worried that one day I will be completely confined to a wheelchair. At least I’ll be able to feel the wind in my hair. I also worry about the ability to have and raise children. Am I fertile? Will I be able to play with my children? Is it morally reprehensible to have children given my condition is hereditary?
A11, welcome to our forum. Unload all you want! We get all this stuff, especially the difficulty in getting a diagnosis. As someone with limitations imposed on you by this disease, you will have empathy for students with difficulty.
You’re right: this has slowed you down, but you are learning all kinds of valuable things about yourself an others along the way. As for graduating when you are old and grey, that may be true. But y’know, you’re going to be old and grey whether you graduate or not. So keep up the good work!
We’re glad you found us, A11, and I hope that you will be too.
Seenie
PS Did your Mom really call you A11? That’s really original. 
Yes my sister’s name is a12. Very systematic mother 
What to say, eh? I’ll echo Seenie’s words, you offload all you want. This is a horrendous history, I’m shocked. But what a wonderful mother you have, she emerges as the hero … after you, that is. You stated in the title that you were offloading so I’m sure you know what is evident to me reading it, that this appalling struggle will have made you strong in all sorts of ways and that you clearly have a life now, and a future. I’m old and grey and still playing catch up, still trying to achieve certain things … IMO it’s the best way! Looking forward to hearing more from you.
My mother is and has been my greatest ally. In high school the administration refused me to park in the handicap spot even though I had a new york state handicap permit. My mother cited the nys law that it is illegal to deny me access to handicap parking. The next year they made 2 additional handicap spots in their student parking lot. Earlier there was none for students. My mom is my hero. She has been along with me through my hardships. I honestly adore her.
That’s just insane. Who on earth did they think the handicap spots were for? Visitors only? You’ve got a good mom on your side.
They told me it was only for staff. I feel bad for those who don’t speak up. How many countless people would just accept that.
A11! Thank you for sharing your story. Many of your experiences resonate with me as another young person with PsA, especially the morning you woke up not being able to move. This happened to me about a year ago and my boyfriend thought I was dying. He had to carry me to our ER across the street. Turns out I was just so inflamed in my chest/lungs/ribs I couldn’t get full breaths in my sleep. Absolutely terrifying for us both to this day.
Your story about the handicapped parking has piqued my interest. I am a current graduate student at a public university and enduring the same situation! They have made the ADA spots “ADA Reserve Only” meaning I must pay $1,800 for a regular parking permit to park in the accessible spots, in addition to my state issued permit. Definitely a legal gray area. Do you have any information on how your mother contacted the administration and how they responded? Do you know of any citation or legal assistance she used? I am trying to change this policy! Not only for myself but for any person with a disability! It is complete BS in my opinion. Thanks.
Hi north,
most all universities and colleges have an office specifically devoted to services for students with many kinds of disabilities (often labelled office of disability services or similar). These offices seek to improve all types of accessibility for students, including physical access to campus. In your shoes I’d start there. Good luck!
Yes you are absolutely right! Unfortunately, student accessibility services have no motivation to change nor workaround a policy at this university. This is a policy created in affiliation with their office and is a revenue source. They are fully aware of the issues it presents on this particular campus. I am currently participating in outside legal counsel.
yikes! I’ve worked at a large university for well-over 20 years and I can’t imagine them not taking seriously an accessibility (physical access) complaint. . It sounds like pressure from an ADA compliance attorney may be what’s called for.That or a phone call to your local news affiliate.
It is very frustrating and distressing. I have been a student and employee at this campus for almost seven years and this is a new policy. The state I live in has very little resources regarding accessibility, let alone awareness and implementation of policies meant to protect or assist those with ADA needs. I am a law student; the irony is killing me!
that’s some cruel irony. and ADA is federal so your state better get down to business!