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!


What It’s Like Currently Being a Student in America

I’ve grown up in a post-Columbine world. The talk of school shootings is not something new to me, I’ve been taught how to prepare for one my whole life. I’ve spent hours siting in dark classrooms, huddled in the corner with my classmates praying it’s only a drill. As of February, there have been a total of 18 school shootings in 2018. The latest, taking place at Marjory Stoneman Douglas High School in Parkland, Florida, where a gunman killed 17 people.

As a current student, this terrifies me. Many days I wake up wondering if I could be next. I’ve made action plans for every classroom I go to, in case I find myself in an active shooter situation. When I see students walking with their hands in a hoodie, I wonder if they’re concealing a gun. When I hear screaming in the hallway, I immediately think “where should I hide?” The worst part about all of this is that it is a preventable issue, yet our government just won’t do anything to prevent it.

I don’t want to be the next victim of a school shooting. I don’t want to see my classmates be victims of a school shooting. I don’t want to see anymore children die in school a shooting. We’re required by law to go to school from the time we turn five until we graduate from high school, and yet we are not safe there. I may now be in college, and have made the decision to be in school, but I still deserve to be safe. No students will be safe until we have gun control, and no students will be safe until our government stops taking money from the NRA.

It is not too soon, now is the time to talk about this. April 20th, 1999 was the time to talk about gun control, December 14th, 2012 was the time to talk about gun control, February 14th, 2018 was the time to talk about gun control, and yet we didn’t. We’ve become so numb as a nation that we get over mass tragedy is a few weeks. We don’t even remember the details of all the recent shootings, because there have been so many. The victims of these horrific acts of violence deserve to be remembered. They deserve justice, and that can only come when we, as a nation, make sure this never happens again. People my age and younger, like Emma Gonzalez, are having to step up and lead a movement. Children, and people who are barely adults, should not have to constantly tell grown-ups that our lives are worth more than your right to own an automatic weapon.



Contemplating Societies Response to Murder Victims

David Sherrard, a Texas police officer, was killed last week after responding to a disturbance call, where he was shot. Later that week his funeral was held, and I just so happened to be driving on the highway that his funeral brigade was being led down. At first I didn’t realize what was going on. There were tons of people sitting on the grass next to the highway, and at least 75 cars pulled over on the shoulder. Finally, when I saw all of the first responder vehicles and tow trucks holding massive American flags, I understood what was happening.

It was tragic and beautiful at the same time. So many people came out to pay their respects to him. I may not be a fan of the way our justice system is run, and I 100% condemn the actions of the racist police officers who continue to target and kill people of color. However, in this situation an innocent man was murdered when trying to respond to a disturbance call and protect the neighborhood. He left behind a wife, two daughters, and countless other friends and family members. The response to his murder brought tears to my eyes and sent chills rushing down my body.

I in no way mean to down-play the severity of this situation or the massive loss his friends and family members are going through, but it made me think about how we respond to other murder victims. When police officers are the victims, hundreds of people gather and make donations. We hear news stories for weeks, and hold huge candle-lit services. However, when the victim is an unarmed black man, who was murdered by the police during a traffic stop, the majority of our society is silent. The victims community steps up, and black people continuously call out the injustice, but the world does not respond in nearly the same way. Where are the hundreds of people waiting to pay their respects to them? Why do we value some lives more than others?

I’m not saying that the response to Sherrard’s death is wrong or unwarranted, I just believe we should have a conversation about why we don’t respond to other victims the same way. We should be even more outraged when the victim is a civilian, let alone a civilian killed by police. It is a tragedy when anyone is murdered, and we should respond in the same way. First responders lives are not more valuable than civilians lives. Every human life has value, and the loss of anyone, especially when they’ve been murdered, should evoke a strong feeling in all of us to pay them respect, and make sure we can do everything in our power so it doesn’t happen again. I want to see hundreds of people gathered to pay their respects to victims of police brutality. Yes, some cases do make it in the news, especially in the last few years, but so many others go unknown. These people deserve the same response and respect that police officers get, and above all they deserve to be treated like their life had the same value.


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.