Trans Day of Visibility 2018

Today, March 31st, is Trans Day of Visibility!

This years theme, hosted by Trans Student Educational Resources or TSER, is “surviving, thriving.” Aiming to acknowledge all of the wonderful accomplishments made by trans people in the past twelve months.

We are not only surviving the Trump regime but we are making strides to transform how people think about gender around the world. In the increasingly transphobic global political climate, we must use our newfound visibility to mobilize trans people against oppression. Speaking out, taking direct action, and educating others is critical to our safety and wellbeing. This recognizes that while visibility is important, we must take action against transphobia. (TSER)

Since I am not trans, I want to highlight some amazing trans people whose content I follow!

Youtubers:

Ash Hardell: Ash is a non-binary, pansexual youtuber who creates educational LGBTQIA+ content. They also wrote a book called the ABC’s of LGBT, and are a fierce ally for the whole LGBTQIA+ community.

Jackson Bird: Jackson is a bisexual, trans man, who creates youtube videos covering a wide variety of topics, including books and being LGBTQIA+. He also has a very successful series called “Will it Waffle?” where he puts different foods on a waffle iron to see what happens, and his reactions are always priceless.

Stef Sanjati: Stef is a trans woman who makes videos about style and beauty, as well as documenting her journey transitioning. She has also recently become vocal about her eating disorder, and is an advocate for those with mental illnesses.

Podcasts:

You’re so Brave: You’re so Brave is hosted by Chase Ross and Aaron Ansuini, both of which are tans men. Their podcast talks about tans issues and the trans experience in general. Chase also identifies as pansexual and Aaron identifies as asexual.

How to Not: How to Not is a podcast where Kaitlyn Alexander and Rob Moden read Wikihow articles and discuss the nonsense that comes along with them. Kaitlyn identifies as non-binary and queer. This is one of my favorite podcasts, because it always makes me laugh and puts me in a good mood. Kaitlyn also makes youtube videos, including a web-series that they wrote and starred in, and they starred in the web-series Carmilla.

WordPress Bloggers:

Color it Queer: I had the honor of having Jess from Color it queer guest post on my blog a couple of weeks ago. She is both queer and disabled like myself, and blogs about a plethora of things including being LGBTQIA+, disability, and activism.

Almost, Almost: I really love the blog Almost, Almost! They are non-binary and post about LGBTQIA+ representation in books. They are the reason I read Dress Codes for Small Towns, which is now one of my favorite books, and they always inspire me to read more Queer YA fiction.

I hope you all check out some of these amazing trans people! Leave some of your favorite trans content creators below, so we can all support even more talented trans folks!

tdov 2018

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Mayo Trip 2: Day 3

Day three at Mayo, I started off by seeing another cardiologist. I wasn’t given a reason for why I was seeing him, and he wasn’t so sure either. Essentially it was unnecessary, and all he said was to stop taking digoxin and gave me a tapering schedule. He asked me if medications have helped my symptoms or if I mainly just push through, I responded by telling him medications have never worked very well for me, so I mainly push through the symptoms as best I can. After praising me for coming to that realization, he gave me a fifteen minute lecture about how so many people are way more disabled than I am, and so I should just push through and not “let my illness define me.” Then he tried to use Stephen Hawking as inspiration porn, which made my blood boil, but I did my best to keep a pleasant face and my mouth shut. I am very happy there is no need to see him again.

I got my results back from the norepinephrine testing and it was normal, so no hyper-POTS for me. They also did a urinalysis to get a base line of my sodium levels, and the autonomic neurologist told me I drink too much water. It’s kind of ironic that I’ve been lectured about drinking lots of water over the years and now I’m being told to decrease my water intake by .5-1 liter. I did drink more than normal that day, because I wanted to make sure the results didn’t make me look dehydrated, and it seems like maybe I went too far. What can I say, I’m an over achiever! 🙂

I saw the fibromyalgia clinic and they were super nice. To be honest I’m a little confused whether I have fibro or not. Apparently I meet all of the 1990 criteria, but it’s questionable if I meet the 2010 criteria. However, she believes when I’m in more of a flare as far as the joint and muscle pain goes that definitely do meet the criteria. Plus I meet the criteria for chronic fatigue syndrome. In her report she wrote “probable fibromyalgia” but the way her nurses report was written it sounded like I had it for sure. Basically I’m supposed to follow suggestions they make for fibro patients, but it’s unclear whether or not she gave me an official diagnosis. I think she did, but it was confusing.

I was supposed to go to a class on fibro today, but it lasted for 8 hours and I’m honestly just so ready to get out of here. I feel like after hearing her recommendations and hearing the autonomic neurologists recommendations that I know what I need to do, and the class may not be all that helpful. Mentally this has been very taxing and at this point in time I think I just need to go home, rest, and assimilate back into daily life. We’re leaving this afternoon, and have no more appointments. I have a lot to process, but I feel very privileged to have been able to go to Mayo and overall I had a very positive experience here. Cross your fingers I don’t have to see the inside of the Rochester airport for quite a while!!

Mayo Trip 2: Days 1-2

I’m already back at Mayo and a few days into my trip! I flew into Rochester on March 22nd, and had appointments on the 23rd. The flight went smoothly, but walking through the airport takes so much out of me. On Friday I had two appointments, one with a gynecologist to have a consult for the possibility of endometriosis ,and one with an autonomic neurologist to talk about / confirm my POTS diagnosis.

The gynecologist visit went fine, but was super inconclusive. He didn’t think I have endometriosis but had no explanation for my super irregular periods. The only way to truly know if you have endometriosis is to have a laparoscopy, but he kind of beat around the bush when I asked if that was something I needed to do. At this point I’m probably just going to continue tracking my periods, and if it’s still an issue later on go see another gynecologist for a second opinion, but endometriosis isn’t a huge concern of mine right now.

I absolutely loved the autonomic neurologist! He confirmed my POTS diagnosis, by evaluating my autonomic testing results, and doing a very thorough neuro exam. He thinks I have hyperadrenergic POTS, and had me do a weird blood test to test my norepinephrine levels. First they place an IV, which took them over 30 minutes and 3 sticks before they got it, because my veins sucks. Then you have to lay completely still in a quiet, dim room for half an hour, in order to simulate what your norepinephrine levels are like while you are sleeping. After that, a nurse comes into the room very quietly, and you cannot speak to them or move while they draw the blood. When they’re done, you have to walk around for 10 minutes (or at least sit up in a chair if you can’t walk) to raise the norepinephrine levels, and finally they draw your blood again. I’ll get the results back from that by the end of this week.

The neurologist went over all of the “lifestyle changes” that are supposed to help with POTS, like eating tons of salt, drinking a lot of water, exercising and wearing compression garments to keep your blood from pooling. I thought it was interesting that he recommended wearing compression style shorts and a shirt under your clothes, because I’ve seen a lot of people with POTS use thigh-high compression stockings. According to him, the blood pools in your thighs and abdomen mostly, so those stockings won’t be as much help, unless you get the ones that go all the way up above your belly button. I really hope making these changes will be helpful, but I know they don’t work for a lot of people, or at least aren’t enough to make them functional.

He talked about putting me back on corlanor if after I try these non-pharmaceutical things, and they aren’t enough. He believes that it might work better for me, when I have a higher sodium level in my body. I hope all of this helps, because I have not been doing well at all. The gastroparesis has caused me to be widely nauseous and not able to eat very much, and the POTS has made me so incredibly tired and light-headed. Add traveling to the mix, and you get one very exhausted spoonie. The neurologist thinks I have mast cell activation syndrome as well, but since I have so much other stuff going on right now, we’re going to hold off on doing more testing for that. Given the dysautonomia and my symptoms I most likely have it, and the reactions have become more frequent. The past five days alone I’ve had a reaction to a new t-shirt, makeup that I’ve worn for over a year now, marijuana smoke (thanks a lot to the assholes smoking in our hotel), and one every single time I’ve taken a shower. Needless to say, Benadryl is my best friend.

I also saw a nutritionist, but she wasn’t very helpful so there’s not much to say about that. I still have a consult with a different cardiologist this week, as well as an appointment with the fibromyalgia clinic to see if I have fibro. I really want to go home, but I’m grateful to be here and I know I need to be here. This post was kind of long, so thanks for sticking around for the end. I hope you all are doing well!

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.

The Intersection of Queerness and Disability: Guest Post- Color it Queer

I’m excited to share a guest post with y’all from the wonderful Color it Queer! She is a blogger who, like myself, is both queer and disabled. The intersection of our identities is not spoken about enough, and is very underrepresented. Sharing stories, like Jess’, is so important in order to bring awareness about our experiences. Jess has a great blog where she talks about being queer and disabled, and she also works with marginalized queer youth, which is super cool. Be sure to check out her blog, and post below!

I’m Jess, and my gender pronouns are she, her, hers. I’m queer and nonbinary and not afraid to be super open about it. You can probably tell from all the stereotypes I fall into, but my disability is invisible. However, you can kind of see it from the scar I have on my head.

I have epilepsy, making me a minority within a minority, a queer person with a disability.

Here’s my story:

It all started in third grade the day after Christmas when my grandma came in to check on me since it was late in the morning. I wasn’t sleeping in though, I had been having a seizure. My seizures were bad when I was young, where I’d have to go to the hospital to get them to stop. We eventually had my seizures under control with medication, but around the time I hit puberty, they started getting bad. By high school and into college I was averaging at about a seizure a month. These seizures were not “as bad,” where I’d literally be able to just go to class after. I had become “the sick child” where I’d constantly be getting more attention than my sister because my mom, who is a single parent, was always worried about me. For example, I couldn’t take a shower with her being home.

I graduated high school in 2013 and that summer, I started looking into brain surgery. It was always an option but something I think I saw as really risky and not worth it. My seizures were hard to deal with, but I was a “trooper.” I never wanted to miss a day of school or go home from a headache. I had been trying other things like tons of medication changes over the years, going gluten free, and even a diet that’s similar to the South Beach Diet. But eventually, I decided to look into surgery with my mom. After a bunch of tests to see if I’m a candidate (aka will I lose senses in my left-hand that I write with since my seizures are on my right side and the ride side controls the left?)

Months later, when I started college, I found out I was a good candidate and planned to have it the following summer so I could recover. Fast forward to the following May 29th of 2014 when I go into surgery that is two parts. The first part was the surgeon cutting open my skull to attach wires to provoke seizures and clarify exactly where the seizures were coming from. Luckily, they were only coming from one place and the second part was the surgeon taking that piece out. As for recovery, by the end of August, I was at an Ingrid Michaelson concert in Central Park and didn’t spend much time recovering, that I can remember.

Since I’ve had my surgery, I’ve only had one seizure, unfortunately, on a bus. That was 2016 I think. I have a horrible memory.

But you said you’re queer, right?

Yes! I didn’t come out until after my surgery. I had been questioning my sexuality, but didn’t come out and seek more professional resources (other than people saying you’ll figure it out, no worries) until my sophomore year of college. Well, actually, I came out to my mom as questioning and then that Spring semester started seeking support from my school’s Lesbian, Gay, Bisexual, Transgender, Queer Center. Then I came out as lesbian.

The following year of college, I moved onto campus into Stonewall Suites, my school’s LGBTQ/Gender Inclusive living community. This was awesome because even though my school was literally a 7 minute drive from my house, and my sister went there, I was there super often and didn’t drive, so it made sense that I lived there. I was finding so much community among other queer folks and got my first kiss ever that year. IT was very exciting time that included lots of new experiences at in my junior year, including starting my blog. Then my senior year, I really found my passion for activism when I became a peer educator at the LGBTQ Center. This connects back to the disability piece because along with outreach work, I facilitated a group called QBility, looking at the intersection of being queer and having a disability.

What now?

Glad you asked! Now, I’m still on medication and still deal with side affects that are a huge bummer, but I’m overall in pretty good health. And I also live across the country in Portland, OR. I moved here after graduating with a degree in Journalism with a minor in LGBTQ Studies for an AmeriCorps VISTA program with Veterans Services. I don’t recommend it (that’s another story–email me). I might be bias because my project closed after 4 months. Luckily, I have a rad job working at a youth home of LGBTQ Youth who are on probation/parole. I love it here in Portland, and the disability piece comes into play again with my lover. Portland has given me lots of firsts as a queer person, and it’s also where I came out as nonbinary. My lover and I have a rad connection around being sick. She taught me that some folks look at being sick as an “inconvenience” when she was diagnosed with mono and celiacs disease and worried that it’d change how I felt about her. But that’s far from the truth. It’s quite the opposite, as we bond over conversations of not feeling bad for being sick or just wanting to cuddle because I know where she’s coming from, and can still relate.

If you want to learn more about me or about the queer community you can check out my blog Color it Queer, here.

Mayo Clinic Days 1-2

This trip has been a whirlwind already!

I arrived in Rochester, MN on Sunday March 11th in the afternoon, and had my first appointment the following morning. Walking into Mayo was unlike walking into any hospital I’ve ever been to before. For one, it’s massive and the sheer number of people walking around can be overwhelming. The employees are super friendly, and they have tons of staff whose sole job is to tell you where to go. It’s very easy to get lost, but when you do there is always someone to help. Most of the people there are old, which I guess isn’t surprising since the majority of sick people are old. I was definitely the youngest person at most of my appointments by a good 40 years, but there were a handful of people who were probably between 16-35.

My first appointment was a chest x-ray, which was started and completed before my appointment time. They are incredibly efficient, and don’t waste any time. I then had an EKG, which also went incredibly smoothly, and finished off my cardio tests for the day with the placement of a Holter monitor. I had done all of these tests before, so I’m not sure why they repeated them as they didn’t offer us any new information.

That afternoon, I had a gastroenterology appointment. I really liked the doctor I saw, but was definitely shocked by what he wanted to do. He thinks my GI symptoms are either caused by pelvic floor dysfunction or are a motility issue. I knew what pelvic floor dysfunction was from following some blogs here on WordPress, but I never thought it related to my issues. He ordered an anorectal manometry test, which I was incredibly nervous for and had a minor freak-out the night before over. If you don’t know what that is, google makes it sound way worse than it is, but it still is a very uncomfortable and degrading experience. I think my GI issues may be motility issues, given my autonomic dysfunction. I have a GI transit study scheduled for later this week.

I did the anorectal manometry test the following day, after some blood work. I had to do an enema prep before the test, and since my stomach was already not doing well that day, it made me really sick. The test itself went pretty quickly, as uncomfortable as it was. I don’t know my results yet, but from what I’ve read I’m pretty sure I’ve passed with flying colors and don’t have pelvic floor dysfunction. After that was over, I had an echocardiogram in the afternoon. I’ve also done this test before, so it wasn’t anything new. The woman who was the technician for my echo would tell me to “stop breathing” instead of saying “hold your breath” which I found very amusing.

All of the cardio tests are being reviewed today (Wednesday) and after more testing everything will be reviewed by gastroenterology later this week. I’ll keep ya’ll updated with everything else that’s going on this week. I hope you are all doing well!

So I Guess I’m Going to Mayo Clinic?

On February 22nd, I had an appointment with my electrophysiologist, and in the end we decided I am going to go Mayo clinic. Instead of spending my first spring break of college somewhere on a beach, I’ll be in Minnesota going to doctor’s appointments. Somehow that doesn’t sound as fun.

I’ve talked about my Inappropriate Sinus Tachycardia before, and how my electrophysiologist believes I should have a surgery to try and correct it. I am currently on the last medication available for IST, and it has failed. My IST is much more severe than most people’s, and my doctor believes my only option is to have a complete ablation of the sinus node (aka they want to burn the shit out of my heart). This will most likely leave me with a pacemaker. At this point I’m not super convinced I want to have the surgery. For a long time now I’ve thought that I may have other autonomic issues on top of IST, and from what I’ve read if that is true this surgery could actually make it worse. This is also a very controversial procedure, and only two places in the country perform more than a handful per year, one of them being Mayo Clinic.

Back in October of 2016, I applied to be seen by Mayo Clinic physicians, and was rejected. They didn’t give an explanation so I have no idea why that was. I’m glad I’m going to be able to go, because to be honest the past three week have been really bad. I started to decline around 10 weeks ago, but it’s gotten increasingly worse in the past three. I’ve been missing quite a bit of school, and I haven’t been able to function at all. This has been a major leap backwards. My last round of quizzes did not go well, and I have two exams as well as a lab practical next week over information I was not there to learn. I am so incredibly frustrated and very sad. I’ve been here so many times before, but it doesn’t get any easier.

I worked really hard last semester and I did incredibly well in all of my classes. My health was pretty good, until the end of the semester, which was a huge blessing. Unfortunately this semester started off bad, and has only gotten worse. It’s so hard to constantly give your all in school, and not reap the benefits because your health sabotages you. Not to mention none of my professors ever respond to my emails, so I have no way of catching up while I’m gone. When I do try and study, I’m not retaining any of the information and can’t concentrate due to brain fog. I feel stuck and powerless.

I am really grateful that I’ve been accepted by Mayo Clinic, and that I got an appointment pretty fast. I’m hoping I’ll be able to see gastroenterology and maybe immunology while I’m there, but I haven’t heard anything from those departments yet. I’m also nervous to go, since I have always felt that if Mayo can’t figure all of this out, no one will be able to. I’m trying to stay hopeful, and positive that we may have some more answers sooner rather than later. I hope you are all doing well!