Ch-Ch-Ch-Changes

Ever since I was little, I have always been an incredibly decisive person. While my brother agonized for an hour over which video game to buy , and my mom became impatient in the Game Stop, I knew exactly what I wanted. I knew what I liked and didn’t, what I wanted and did not want, and more than anything else, I knew who I wanted to be and who I did not want to be. I am still very much this person today, but  when it comes to the age old question of , “what are you going to do with the rest of your life?” I find it incredibly hard to answer.

I have spent the last year as a biology major at a liberal arts college, planning to either go into medicine or nursing. I love all things medical, and have a curious mind for how the body works. However, the more and more I contemplate the logistics of it, I do not think it is going to work. My chronic illnesses are not conducive with the physical demands of these jobs. Honestly, that is an incredibly hard thing to accept. We are so often fed this narrative that disabled people need to “overcome” their disability and never let it “keep them” from doing what they want to do. While these ideas can come from a good place, they are incredibly toxic and fail to recognize that you cannot just turn disability off because you want something bad enough. I cannot yearn for normalcy and simply receive it.

Through high school, and my experience thus far in college, I have kept hoping that my illnesses would improve. After having the majority of my diagnoses for over a year now, I know that the possibility that I will improve to the point of being able to have a physically demanding job is slim with the current treatment options that are available. This does not mean things will never improve, but they would need to improve by miraculous standards in order for me to be successful at job like these. I have chronicled my trouble with this some here on Queerly Texan, and have mentioned that I applied to my dream school for their nursing program. Last week I found out that while I was rejected from their nursing program (with an abysmal acceptance rate for external nursing transfers) I was accepted into my second choice major: health and society.

It’s still a little surreal that I was able to be accepted into one of the best universities in the country. Going to the University of Texas has been my dream since I was really young. I love Austin as a city, and I cannot believe I am going to have the opportunity to live there. My education journey has been incredibly difficult, but I am so happy to finally be where I’ve always wanted to be. I wish I could go back in time to when I was getting my GED, and tell my younger self that things were going to work out. As of right now, I am planning on getting my bachelor’s in health and society, and then I am going to pursue a master’s in policy. This let’s me combine my interests of the medical world and public health, with my love for social justice.

I’m looking for an apartment this week, and have orientation coming up in a few weeks. Life sometimes has a weird way of getting you where you need to be. I’m excited to see where my life goes from here.

As usual, I hope you all are doing well.

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Finals are over, which means I’m back!

Hi!

It’s been a while (that’s how I start every post now, sorry!). I have not been super active on this blog for a while now. My spring semester of college is over! The biggest reason why I haven’t been on this blog much is that this semester has been incredibly difficult. My health has been bad, and one of my family members had some very scary health moments at the end of January that were quite traumatic for all involved. Needless to say, life has been stressful and I barely had it in me to complete my school work let alone use any energy to blog. On the bright side, this is the first time in seven years that I’ve completed two semesters of school in a row. What a huge win! It may have been quite difficult, but I did it and I’m very glad it’s over.

This summer is going to be quite busy for me; I’m leaving for vacation in less than two weeks, I’m having surgery in the beginning of June (more on that later), I’m taking summer classes, and then moving in August. I’m not sure how this is all going to play out since I haven’t been doing well, but I’m hopeful that things will work out. I am also still waiting to hear back from the colleges I applied to transfer to, but should hear before mid-June.

I appreciate everyone who continues to follow my blog during my absences and those who have reached out to me over the past few months. I’m planning to be more active on here this Summer, and can’t wait to catch up on everyone’s posts that I’ve missed. As always, I hope you are all doing well!

 

 

 

Revisiting My 2018 Goals

At the end of 2017, I made a post about what my goals were for 2018. During the entirety of 2018, I never went back and read them until now. To be quite honest I had forgotten what most of them actually were, which made revisiting them kind of fun.

My first goal was to keep my grades up, or more specifically, maintain my GPA in the spring semester of 2018. Now I’m not sure whether to say I met this goal or not. On one hand, I actually ended up having to drop out of spring semester due to illness, so I didn’t receive any credits for the work I did at all. However, I did maintain my GPA for the fall semester when I went back to college. Technically I did keep my grades up, just not in the spring semester. I’m gonna call it a win, even though it is on a technicality. 🙂

My second goal was to transfer to a university and I did that! I didn’t end up at the school I thought I would go to in that post, but I did in fact transfer to a new school.

The third goal I had was to get my pharmacy technician license. I did not do this, and it is also no longer a goal of mine. I changed my major and getting a pharmacy tech license isn’t as relevant to my future as it once was.

My fourth goal was to be more involved in my community.  This year I did a few new things to be more involved like participating in the March for our Lives, and voting in my first election. My community also changed some, as I moved forty-five minutes away to go to university. I joined a few clubs/organizations at my university, one of which is a volunteer organization where we do blood pressure screenings for people dealing with homelessness and poverty.

The last goal I made was to continue blogging, and I think this post is proof that I did in fact do that. I would like to blog more in 2019. This year was so crazy for me that my blogging slowed down towards the end of the year, but I would like to post more often in the future.

What goals did you have for 2018? Were you able to accomplish them? Let me know in the comments! I’d also love to hear that your goals are for 2019. Look for a post of my 2019 goals coming soon!

 

Turning 19, Finishing my First Semester at a University, and More Life Changes

Ya’ll! It has been far too long since I’ve properly sat down updated / spent time on this blog in general. Finals are over (hallelujah) and it’s officially winter break. I’m going to try to rapid fire catch ya’ll up on everything.

Back on November 17th, I turned 19! It feels really weird to say I’m nineteen, as it sounds both far too old and too young at the same time. My birthday was on a Saturday, so I went home for the weekend and celebrated with my family. My older sister couldn’t come that weekend, so she came the weekend before to my apartment and we had a lot of fun hanging out. She lives four hours away from me, so I don’t get to see her as much as I’d like. We went to a queer coffee shop in the city my university is in and played Drag Queen Bingo, which was really fun!

School has been a whirlwind. I can’t believe this semester is already over. As a whole, I had a pretty good semester. I took Biology II with lab, chemistry I with lab, and Spanish II, which totaled to 13 hours.  Chemistry was HARD! Since I didn’t really go to high school, I practically didn’t take chemistry, so everything was new to me. However, even all the other students who had taken chemistry previously also struggled; I guess it’s considered a “weed out” class for a reason. I managed to pull out an A, but there were definitely times that it felt like I was holding onto that A by a thread. I’ve never studied so much in my life for one class, but I feel very proud that I was able to do it. I’m very pleased I was able to keep my 4.0 this semester!

After many conversations and months of internal conflict with my college major choice, I’ve decided to change my major to nursing. I think the nursing approach better envelops my ultimate goal of taking care of chronically ill patients and being their advocate, than the general approach of being a doctor does. I do however still want to be in a provider role, and plan on getting my masters to become a nurse practitioner later down the road. It took me a long time to get to this conclusion, but I’m really excited about it. Realistically I knew Med School would never work out anyway with my health issues, but I didn’t feel peace about letting go of that dream until recently. The only downside is that my university does not have a nursing program, so I have two options: 1. finish my prerequisites at my current school and then apply directly to nursing school for Fall 2020, 2. transfer next fall to a school that has a nursing program to finish my pre-reqs there and then go to that universities nursing school afterwards. I am planning on re-applying to my dream school because they have the best nursing program in the state, and if I don’t get in then I’ll just finish up at my current school.

I’m a little bit sad about the possibility of me leaving my current university. Although this semester has been tough, I do really like the school. On the other hand, the school I’m applying to has been my dream school for so long and it’s in the city I’ve always wanted to live in. I have not made the friends I was hoping to this semester, so the idea of starting all over again is both intriguing and terrifying. I’m really hoping I make some friends next semester, as I’ve been incredibly lonely.

Overall I am really grateful for this semester, and everything it has taught me. Thank you for sticking with me, even with the lack of posts these last few months. I’m hoping to be able to post more in 2019. How has your life been? If you are in school, how did your semester go?

I hope you all have / have had a very happy holiday season!

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!

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.

Dear Body,

The Dear Body Project was started by Ari Fitz. She asked some of her friends to join her in writing love letters to their bodies to promote body positivity. Since then, many people have started writing letters to their own bodies and posting them as videos, letters, and photo captions on social media. Here is my love letter to my body.

 

Dear Body,

Wow we’ve been through a lot together. I often find myself blaming you instead of recognizing how much you’ve been through. For many years, it felt as if I as a mind, were fighting you as a physical being. A battle I felt you always won, yet somehow we both lost in the end. Together we’ve gained weight and lost weight, gained confidence and lost confidence. We’ve struggled to stay alive, and we’ve celebrated living life to the fullest.

When people talk about disabled bodies they often say, “You are not broken, you’re beautiful,” but I believe we are both. Beautifully broken. Not that every aspect of you is always beautiful, but I’ve learned it doesn’t have to be. Thank you for doing what you can, even when I feel like you aren’t doing enough. Thank you for teaching me that my value does not rely on others traditional measurements of success. I’m sorry often I don’t believe you.

I don’t appreciate or praise you enough. I want you to be perfect, look perfect, and work perfectly, but those aren’t fair expectations. I promise to try and not make perfection the goal, but you know how meticulous I can be. I am learning perfection is subjective, and you are perfect at doing what you are able to do. Thank you for continuing to fight for me, not against me, even when it feels like the world is fighting against us.

Love,

Alyssa