My Experience Getting a Disabled Parking Permit

I’ve questioned if I’m “disabled enough” for a disabled parking permit for a long time. On the outside I look like your average eighteen year old girl, so people tend to downplay the severity of my chronic illnesses, and I was afraid to ask for help because I didn’t want to be laughed at or accused of exaggerating. Even though many people who have the same conditions as I do use a disabled parking permit, I was still apprehensive about asking for one.

My mom and I have been discussing this for quite a while, but when I found out I was going to college and living off campus, the conversation became more serious. The college I’m going to is very large and they have a huge parking issue. Even if I went to class two hours early to find parking there’s still no guarantee I’d find a spot, especially since students who live on campus are prioritized when it comes to parking. When I was going to community college I would get to school an hour early because the walk from the parking lot to the building, and then from inside the building to my class would take so much out of me that I would feel awful and needed time to rest to regain some energy.

Honestly, going through that routine everyday was incredibly tiring physically and very daunting every morning. Not even being able to get to class at a community college without at least a 20 minute break to recover was a reality check for how bad things really were. I would use all my energy to go to class, and then would crash and feel even more terrible when I got home, to the extent I wasn’t able to do anything at all for the rest of the day. Then things got even worse and I wasn’t able to do it at all.

I was really nervous to ask my PCP about the parking permit, especially since I just recently switched to a new PCP (my old PCP I had seen for six years and she ran out of ideas so I decided to get a fresh pair of eyes on my situation). However, she is pretty well versed with the whole Dysautonomia thing and everything that goes along with that, and she agreed that it would be beneficial to me especially in the school setting. Outside of school, I plan on only using it on really bad days. If I’m feeling decent then I won’t use it, or if the nearest available parking spot isn’t too far, I also won’t use it.

When we went to the DMV to actually get the permit I was nervous that they would think I was faking it, since I don’t fit the physical description of what most people who receive these permits fit. However, the man was very nice and everything worked out perfectly! I sat down while my mom stood in line, and then went up to the desk to give the man all my paperwork and my ID. I started to feel really terrible right after we got there, so when the man asked if I needed to sit down while he looked over everything, I was very grateful. My mom stood there while he looked over everything and got the placards, and then we were done! The whole process took maybe twenty minutes, which I was really thankful for since I thought it would be like the DPS where you have to wait for over two hours just to renew your license.

This is definitely not something I want to have to need, but I’m glad the process was easy and painless. I hope actually using it in the real world goes smoothly too!

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Life Update: Withdrawing from College

This semester has been incredibly rough for me.

Some of it I have shared with you, like documenting my journey at the Mayo Clinic, but there’s been a lot going on that I haven’t talked about yet. My health has been very poor since around the last few weeks of Fall Semester, and has been continuously getting worse. This was one of the major reasons I chose to go to Mayo in the middle of Spring semester. Unfortunately I missed a lot of class before my trip, and then a whole week for the trip (my first trip was during spring-break so I didn’t miss any class for that). While I was successful in obtaining multiple diagnoses, the treatment options are very limited.

As of right now, they are mainly focusing on the lifestyle changes; things like exercise, following the gastroparesis diet, and eating tons of salt. These things may or may not work, and if they do work it’s going to be months before I see any improvement. Since returning from my trip, I’ve only become more symptomatic and much less functional. I’m honestly not sure what to do right now, since I know if I contact the Mayo doctors they will probably tell me to just keep trying to do these things since it hasn’t been long enough to see results, but at the same time my body is incredibly weak and doing simple life tasks can be very difficult.

Missing this much school has seriously affected my grades. Some of my professors have been great, and others have been awful. I have disability services, but they aren’t very helpful and professors have found loop holes that essentially disregard any accommodations I’m supposed to have. It’s crazy how little legal protection disabled people have, but that’s a whole nother can of worms. I made the decision to withdraw from college, since my Spring semester grades were going to tank my GPA. I really wanted to only withdraw from the two classes I was doing poorly in, and stay in the two classes that I had nearly perfect grades in, but that isn’t an option at my college.

This also means I will not be able to transfer to a University in the Fall. I won’t have nearly enough hours after I lose these 14. Now, I’m going to have to do at least one more semester at community college, maybe two. I’m trying my best to remind myself that I’m only 18, so I’m actually ahead of my peers by at least one college semester, but withdrawing makes me feel so behind. There’s a lot of emotions to process, and I’m doing my best not to fall into a pit of despair, but it’s been really tough. I think hope and positivity are important when it comes to living as a chronically ill person, but I also think it’s okay to recognize that some situations just suck.

I’m planing to return to college in Fall, or even take a Summer class if I’m able to get my health under control enough. As difficult as this decision is, I know it is the right one. This is not the first time I’ve had to withdraw from school, as many of you know, I started this blog right after I withdrew from high school in November of 2016. It’s crazy to think that almost 18 months later I’m having to do the exact same thing. I’ve got to say it doesn’t hurt any less the second time around, but I know from the first time that it will get better.

But it looks cute! : Chronically Misunderstood

It’s been a while since I’ve done a “chronically misunderstood” post, but don’t fret strangers are rising up to the occasion and helping me continue this series!

The majority of the posts in this series are about events that happened a while back. This one however took place just a few weeks ago. If you saw my post about trying Corlanor, then you know this medication gave me fairly severe side effects. On the Monday after I started Corlanor I was a hot mess. I dragged my body to school since I had tests that week and needed to make it to class, but I looked awful. I had no make-up on, I was wearing an over sized jacket, and my hair was in a ponytail. Most days I slap on some make-up, straighten my hair, and trick everyone into thinking I’m fine, but I just couldn’t do it that day.

I got to my second class of the day, which is Algebra, and I needed to turn in my lab since I had missed Friday’s class to go to the Electrophysiologist. I walked up to my teacher’s desk and instantly everything went black and my whole body felt like jello. I grabbed onto her desk rather abruptly and slurred out enough words to explain what I was giving her. She looked at me like I was crazy, and I’m pretty sure she thinks I’m weird, but oh well. I made it back to my desk, and sat down, when the person who sits next to me asked an all too familiar question. “Is your face always this red?” I’ve gotten this question a lot over the years. Most people think I’m sunburnt or embarrassed, but it’s just my face and screwy autonomic nervous system. My face looked red because

1. I had no makeup on

2. I don’t regulate my own body temperature well and my face was super hot

3. I was trying not to pass out

I told him that no, I don’t always look like this, and I wasn’t wearing make-up or feeling well. I guess the look of exhaustion on my face made him think I was upset, so he started back-tracking and apologizing profusely. Honestly, I’m not offended by anyone asking, but I do think it’s rude. In the moment, I just really didn’t feel well and was too disoriented to have a whole conversation on why my face looked uglier than usual. The girl who sits next to him then said, “but it looks so cute! I wish my face looked like that!” Okay, cut the bullshit. I’m way more offended by you trying to act like I look “cute” than by some dumb guy essentially asking me why I look ugly today. It doesn’t look cute, it looks bad. There’s no need to act like it doesn’t. I’m not upset by it, it’s simply just something that happens and is a part of my chronic illnesses.

The girl then continued to tell me a story about when she had a reaction to a face wash in middle school. She ended with, “and yeah my face looked like yours.” There isn’t an eye roll big enough. During all of this I was still super disoriented and couldn’t form together enough words to respond. Oh the joys of chronic illness! I find it hilarious when people try to “relate” to my situation by telling me obscure things that have happened to them.

At least I look cute though, right?