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!

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Queerly Texan Turns Two!

Today, two years ago I started Queerly Texan!

I never would have thought that I would still be blogging two year later. Queerly Texan has been an incredibly important part of my life over the last two years. It’s helped me connected with other queer and chronically ill people, which I wasn’t getting in my real life. I have documented so many of my triumphs and difficulties on this blog and I wholeheartedly appreciate everyone who has taken the time to read any of my posts, left a comment, or followed this blog. It means more to me than you could imagine.

I hope I can return the favor and help other people looking for community online to feel a little less alone, at least for a moment. Thank you to everyone who has done that for me.

Love,

Alyssa

Lonely: A Poem

I am suffocated by loneliness

The silence is ear-piercing

as my soul desperately searches for some sort of noise

 

my social life is solitary confinement

and my shackles are isolation

even within my seclusion I feel companionless

like I am the only one who has ever felt this hollow

 

my dreary existence never gets easier

another day, month, year passes

and yet the abandonment I feel only grows stronger

 

they say humans need one another to stay alive

so is that why I feel lifeless?

Plan Z : A Poem

Plan Z

 

Plans have never worked for me

All the color-coded lists are only figments of control

These pens in my hand have no power

 

Balled up paper on the floor tells my life story

Constantly rewritten

Red pen marks everywhere

 

Mid-Sentence stops because the plan didn’t even make it that far

Before whiteout was needed

Because once again things have changed

 

My hand hurts from re-writing

And each edit makes me feel like I’m losing another part of myself

Plan C felt doable

But that was so long ago

 

Plan Z is less promising

I’ve learned to start writing in pencil

Leaving the page blank feels like giving up

But I’m tired of erasing

 

 

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.

Mayo Clinic Days 3-6

Day three was pretty simple. The only appointment I had was to see the electrophysiologist. Essentially they confirmed what I have believed to be true for the past two years. They think I have dysautonomia and postural orthostatic tachycardia syndrome, and had me do autonomic testing to confirm the diagnosis. I do not yet have those results, but from the numbers I saw during the test, I think it’s going to be confirmed. Since this is an autonomic issue, they’ve referred me to an autonomic neurologist. Unfortunately we couldn’t get into see her this week, so we will be returning to Mayo later next week. They reiterated to me how difficult it is to treat dysautonomia, and how since I’ve failed every medication used to treat POTS already, there isn’t much they can do. It’s incredibly discouraging, but not surprising. My electrophysiologist here in Texas wanted me to have a complete ablation of the sinus node, but given the statistics they quoted me, it definitely isn’t on the table right now, since it has a greater possibility of making me worse or doing nothing at all than helping.

On Thursday, I began my GI transit test, which is basically a gastric emptying scan only they look at the whole GI tract. I had to eat a breakfast of two eggs, a pice of toast, and a glass of milk in ten minutes, which made me really sick. Then for lunch I had to eat a sandwich made with butter, mayonnaise, 5 ounces of turkey lunch meat, with a whole bottle of water and a container of jello all in 30 minutes. I ate as much as I could, but I had to stop when I started violently retching, because throwing up could have altered the scan. Friday morning I had more x-rays to do for the scan, and then I had my autonomic testing done.

Friday afternoon, I had my follow up with the gastroenterologist, and frankly its been hard to digest (no pun intended) the news he gave me. Essentially I have gastroparesis and pelvic floor dysfunction, neither of which was I expecting, let alone two separate GI diagnoses. Gastroparesis is also something that is not easy to fix, and knowing how severe it can get for some people really scares me. At this point mine has progressed to moderate (out of mild, moderate, severe) and they’ve recommended I eat mainly pureed and soft foods. Following a gastroparesis diet is going to be a complete 180 for me, since the main things I eat are fruits, vegetables, and brown rice and I’m no longer supposed to eat any of those. As for the pelvic floor dysfunction, I’m not emotionally ready to try and treat that yet. It involves very invasive physical therapy, that I do not feel is necessary, and I definitely want a second opinion about before I do something so drastic.

The cardiologist thinks I also have fibromyalgia, and the GI suspects endometriosis. When I go back next week I’m seeing a gynecologist for the first time, and also the fibromyalgia clinic, as well as a dietitian to learn more about how I should change my diet. This has all been incredibly overwhelming, but I finally have some answers after six hard years of looking. I’m going to try and go back to school on Monday, but I honestly can’t even imagine going right now. I feel as if I’ve been living in an alternate universe, and being thrown back into daily life feels so odd. Even though I was only gone for one week, I feel like I’ve been gone for a solid month, but as I’m writing this I’m curled up in my own bed with my cat, and some level of normalcy feels restored. I apologize for being MIA, and a lot less active on here for the past two months, I hope you can see a lot has been going on in my life! I will continue to keep y’all updated through my Mayo Clinic experience when I travel back next week.