College Life Update

I’m sorry I was a little MIA in September, it turns out college takes up a lot of your time!

In my last update I had just moved to college and was having a rough time adjusting, but I’m happy to say I’m at the end of my seventh week of school and things have greatly improved home-sickness wise. Being a biology major is a lot of work and the classes can be pretty difficult, but I’m really enjoying my biology class. Right now the only thing I’m struggling with is chemistry, which is probably because I didn’t take it in high school, so I’m learning everything for the first time. My first chem exam didn’t go great, which is disappointing, but I think the next one will go better now that I know what to expect.

I’ve tried out a couple different clubs, but I’m still trying to find my people. Being a transfer makes it a lot harder to make friends, since you aren’t in a dorm where everyone is desperate to find friends like freshmen are. I’m hoping that it’s just going to take some time, and as I meet more people through these clubs, I’ll find people to hang out with.

On a health note, things have not been easy. When I started classes I wasn’t feeling well, but I wouldn’t say I was doing awful. It’s currently the seventh week of school (out of 16) and it’s become increasingly more difficult. My health tends to follow a pattern of doing it’s best around late-august and then declining until it’s worst which is usually mid-december until sometime in the summer. This isn’t set in stone, it has strayed and done something different before, but this is a very common pattern for me. It’s frustrating and discouraging to see my body continuing to do this, but I want to be at college and be successful in my classes so bad that I’m pushing so hard to stay here and do well.

Pushing yourself when you’re sick is a damned-if-you-do damed-if-you-don’t kind of situation. I often push myself too hard for too long and end up losing all progress I’ve made and go back to not being able to function at all. However, if you don’t push yourself you won’t succeed in the first place. I’ve been forcing my body to do so much that it has repeatedly told me it can’t handle that I’m afraid the current repercussions are only the beginning. For now, I’m going to keep trying my best and doing as much as possible while attempting to think positively.

I started seeing a new GI since my last GI, who I loved so much, gave me the “I don’t know what to do anymore” speech. I didn’t love the new GI right away, I felt like she didn’t really listen when I was speaking and she made me try a medication that I explicitly told her not only didn’t work for me in the past, but also made things worse.  Surprise, surprise it made me horribly ill again. My GI system is beyond messed up and the list of foods I’m able to eat in dwindling down rapidly. I have my second appointment with her at the end of this month, so I’m hoping we can come up with a better plan then.

I also started Xolair shots for the mast cell issues, and received my second shot earlier this week. So far I have yet to see a difference in my symptoms but this medication can be one that needs to build up in your system before it will work, so I’m hoping to see improvement after the third shot. The allergist wants me to cut down on the amount of antihistamines I take, but because I haven’t seen improvement I feel like I’m going to be miserable without them. I’m going to try to cut them down this weekend, so if things go bad then at least I won’t have to worry about going to class while being so itchy and rashy.

I’m also supposed to get my genetic testing results back at the end of this month to see if I really do have hEDS or if I have another type of EDS. I’m slightly nervous for the results, but overall I’m pretty sure I have hEDS and would be surprised if the results said something different. These past two months have been quite the whirlwind, but I feel lucky to even be experiencing the things I’m experiencing.

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National Coming Out Day 2018

Today, October 11th is National Coming Out Day!

Rather you’ve been out for years, recently came out, or are in the process of coming out, today is the day to celebrate that experience! October 25th marks three years since I came out and honestly it feels like I came out way longer than three years ago. Coming out was one of the best decisions I’ve ever made and I’ve felt so much more free ever since that day.

Coming out is not a one time deal, it’s something that happens over and over again. Thankfully, for me at least, it feels easier and easier every time. Becoming comfortable with who you are doesn’t happen over night and doesn’t happen just because you came out. Just know that where ever you are in the process of coming out, figuring out your sexuality / gender, or just simply embracing your LGBTQIA+ identity things get so much better.

If you’re coming out experience was / is negative, there is a huge community of people ready to love you and welcome you with open arms. You are not alone, and you will be okay. If you’re not ready to come out, don’t worry and don’t rush it! Come out when you want to and when it’s safe!

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I really enjoyed this post from Let’s Queer Things Up, about chronic illness and relationships. It’s so important that the people we let into our lives learn about our disabilities and how to interact with us in the context of our disabilities.

As much as I hate admitting this, these were lessons that I often learned the hard way.

via 5 important mistakes I made as a partner to someone with chronic illness. — Let’s Queer Things Up!

Safety in Femininity

In one of the many discussions I had with my parents before leaving for college, my mom voiced her concerns about people being hateful towards me due to my sexuality. Without even thinking I responded back, “well when you look like I do, people assume you’re straight.”

I found myself contemplating the dynamics of being a queer woman and femme presenting versus being a queer woman and masculine presenting, as well as why I personally choose to present femininely. The immediate thought that came to mind was presenting femininely is safer. I live in this weird dichotomy of desperately wanting to be seen as queer in order to meet more queer people, but also presenting femininely in a way that is most often read as straight because it’s safer. Of course the aspect of personal preference comes into play, but I also find myself wondering exactly how I would present if there wasn’t all of this societal bullshit tied to dressing a specific way. That is a question I personally still do not know the answer to.

I don’t feel uncomfortable in feminine clothing. In situations where I am even more femme than normal it can feel like I’m playing a character, but that’s not always a negative feeling, and usually that has more to do with the situations I’m in, than the actual clothes themselves. I do feel more powerful on the days I dress a little more masculine or androgynous, and I like the way I look in those clothes. In the past year or so I’ve started to dress in a way that’s more visibly queer, every once in a while. While I like the possibility of being read as gay when I dress like this, (although let’s be honest most people still think I’m straight) I find myself wondering if and when, it’s “too much.”

Internalized homophobia is a bitch. There’s no such thing as dressing “too gay” or being “too much” because of it. Also, my personal version of dressing more androgynously is still pretty femme and often continues to be read as straight. I would say internalized homophobia is the main influence that keeps me from dressing  more androgynous-leaning regularly. On the other hand, I do like feminine clothes, I enjoy wearing makeup and having longer hair. I think overall I just wish on the days I want to switch things up and dress more androgynously that I would feel comfortable to, without thinking “is this going too far?” or “is this too much?” I don’t think I have all the answers to these questions or this situation myself yet, but the process of figuring it out has been quite interesting. I’d love to hear anyone else’s story of how they came to find the way they like to present, and how that relates to their queer identity!

Sunburnt: Chronically Misunderstood

My face is red, in fact my whole body is red. The severity of the redness changes- sometimes it’s only faint, and other times I look like the human embodiment of a tomato. Most of the time I’m somewhere in the middle. This is not a new experience, I’ve dealt with severe flushing since shortly before the start of my health issues. After my recent diagnosis of Mast Cell Activation Syndrome, we assume that’s probably the cause, and it is sometimes exaggerated further by over-heating from POTS. No matter the cause, my face is red and people have a lot to say about it.

Everyone and their mom thinks I’m sunburnt, and also thinks it’s okay to comment about it to me. “Do you have a sunburn?” “Why are you so sunburnt?” “Do you always look like this?” “Is you’re face always that red?” “You should wear sunscreen!” “What’s wrong with your face?” I could go on, but I think you get the point. Every time this happens I use a response similar to, “No, I’m not sunburnt, this is just my skin.” and I stare blankly back at them.  That’s when things go to the next level of awkward. You’d think people would be embarrassed that they made that completely uncalled for and inappropriate comment, but they never are, not even the slightest bit. I usually get an uncomfortable look from them and another comment like: “Oh well I wish my skin was like that!” or “That’s weird that your skin does that without being in the sun.”

“Oh well I wish my skin was like that!” is my least favorite follow up comment. No, you don’t want to have skin like mine. It isn’t cute or pretty, and it doesn’t have to be. Do not patronize me by acting like it’s desirable. Not everything in life is pretty, and that’s okay. I’d rather acknowledge that it doesn’t look good then live in some fairy tale world where everyone wants to look like a tomato, because that simply isn’t true. The comments are abundant during the summertime, since that’s when the most people are sunburnt. For the record, I am not offended by these statements/questions, they are just really annoying.

I used to be super self-conscious about my skin, but I feel better about it now than I ever have before. I can chose not to wear make-up and still feel good about myself, which used to be something I couldn’t do. Most of the time I still wear makeup though, because the comments are tiring and I don’t want to answer questions about it. Although, even with makeup on, the redness in my skin is still very visible. When I was self-conscious, the comments definitely made me feel worse than I already did about my appearance. One of my least favorite things about the flushing is that when it’s the worst, I usually am feeling really terrible, and the last thing I want to do when I’m feeling sick is explain to people why my body does not look how they think it should look. Existing in public while feeling ill is worse enough, dealing with comments like these only adds insult to injury.

Moral of the story? Just don’t comment on other people’s appearances, don’t ask questions that are none of your business, and if you mess up don’t make it worse by making another dumb comment.

 

 

Remembering Claire Wineland

Claire Wineland was a pivotal member and advocate for the chronic illness community. She was a 21 year old with Cystic Fibrosis, who passed away on September 2nd, 2018, a week after she received a double lung transplant. Claire was everything I aspire to be as an advocate, activist, and human being. She was outspoken and honest, she was funny while always being very raw about the realities of living with a terminal illness. Claire didn’t sugar coat things or act as if living with a chronic illness was easy. One of my favorite quotes from Claire is:

“Death is inevitable. Living a life we can be proud of is something we can control.”- Claire Wineland

I’m not one to call disabled people inspirational given that we are constantly used as inspiration porn for the able-bodied, however Claire was an inspiration to me. When I think about the person I want to become, so many qualities that Claire had come to mind. I hope one day I can be as care-free as Claire was. She was a giving person who started Claire’s Place Foundation, an organization that helps support families living with Cystic Fibrosis financially. In her death, Claire continued to be a self-less person by becoming a organ donor.

My life has been touched by Claire Wineland, and I’ve never even met her or had any conversations with her. I cannot imagine the terrible loss her family and friends must be feeling at this moment. Claire will forever be missed by the chronic illness community, and we will forever be indebted to her for her advocacy and generosity over the years.

Moving Into My First College Apartment

On Friday I took the leap and moved into my apartment!

We had brought almost all of my stuff on the 18th, so I packed up my truck with the few things I had left and drove myself to my University. I’m not gonna lie, driving away from my parents and home was so hard. Luckily for me the drive is about 45 minutes to an hour, so it wasn’t too bad. I know I’m really close, but right now it feels super far.

I’ve barely been here and I miss home so much. Since I’m a transfer student there wasn’t all the events that new freshman have. They did have a few, but I would have had to leave on Monday to be a part of them, and I wasn’t ready to leave then. I’m spent most of my time putting together the last few pieces of my apartment, but I’m feeling super lonely. I know this will get better and is just a normal part of leaving, but boy does it hurt. I’m so close with my parents, especially because of all my health issues. I’ve been so isolated for the past six plus years that I truly have no one else besides my family. Dealing with not having friends is tough, but this is the most lonely I’ve ever felt.

For now I’m just trying to keep myself busy. My problem is that I can only exert myself so much before I feel sick and have to lay down, but when I lay down I’m less distracted from my sadness. I’ve been forcing myself to keep doing stuff even when I feel bad because at least I feel a little more distracted from being sad. I’m sure when classes start this will get better though since I’ll have a lot more to occupy my time with. Class starts Monday so logically I know it’s really soon and things will feel better then, but in this moment time is passing incredibly slowly.

I have a roommate but we’ve barely been spoken to one another. I’m hoping we can get to know each other a little more this weekend, and that things improve on that end.

I know I made the right decision to leave home and try to attend college at a University, but home sickness makes you question everything. Seriously, no one tells you it will be this hard.  Let me know if you have any tips for leaving home for the first time!