I decided to start a series of posts entitled "Living with Lupus..." and specifically focus on one aspect of life. Since I'm currently in a flare and school is my biggest concern...that is the focus of the first post.
I was diagnosed with APS when I was 16 and over five years later, my illnesses still aren't under control. So how have I managed to finish high school (missing around thirty days my senior year) and do well in college for the last three plus years? I've had a lot of help.
Gotta give mad props to the Americans with Disabilities Act for applying to education as well as employment. How does it apply? Basically teachers/instructors/professors are legally obligated to make accommodations for people with disabilities. Of course, these disabilities have to documented by the educational institution. Instructors must be informed of these accommodations...not going to lie this is usually awkward. The school that I currently attend has a Disability Office which I visit once a semester to meet with one of their advisors. We go over my class list, talk about the previous semester's accommodations, and what we might need to change. My accommodations haven't changed for the last three semesters which is nice. The awkward part comes when I have to approach my professors, tell them I have an illness and work with the DO, and nicely inform them I might miss multiple classes. My accommodations include extended absenses, extended time for tests/assignments, and a copy of the notes if I am gone. Not that bad right? still no one likes to hear that but I haven't run into any problems at school so far.
High school was different, mainly just because of the paperwork. We had an amazing school nurse who is one of the most caring women I've ever met. I basically had to fill out a 504 plan which just informs teachers what to do if I was gone for a significant period of time. It was hard at points but I got everything done.
My mom...bless her heart times about a million. I have been lucky enough to live at home all through college. I couldn't live in the dorms...things are too inconsistent. Lupus is all about balance...I'm walking on a tight rope every day. I worry about school and that's it. I don't have to deal with food or anything like that. I'm not completely dependent! I clean, do my own laundry, blah blah blah. But the idea of cooking dinner every night plus homework etc seems too daunting. I would probably just skip dinner (and weigh less).
Now, another thing that has helped me in school is Vocational Rehabilitation. I did not even know about this program until the nurse I mentioned earlier (the wonderful one...remember?) told my mom about it. Voc. Rehab has essentially paid for half my tuition. In the last three years, it has made it possible for me to not have a job. Me + job = disaster! I simply can't juggle a job and school and do well at both. Believe me, I've tried....Voc Rehab is a life line for me!!!
And the last thing that has helped me survive college with chronic illnesses is myself. I work hard. I work through pain and frustrations. I work ahead of peers in case a flare does spring up. (Thanks to my illness) I don't go out...I stay home and do school work. So see not everything about illness is bad! Cheer up buttercup!
If anyone has any questions about different programs or specific tips for college life with chronic illness, let me know and I will try to help!
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