Corlanor and Other Frustrations

Last week was the roughest week I’ve had in a while. My migraines have returned, my stomach has continued to be a hot mess, and my heart is becoming a major problem again. What a great mix!

I saw a new electrophysiologist on Friday, and he confirmed my diagnosis of Inappropriate Sinus Tachycardia. I was diagnosed with IST back in February after an electrophysiological study, but due to a terrible experience with that doctor I hadn’t done much about it since then. I’ve tried metoprolol, verapamil, and propanolol to slow my heart rate, but all of them failed to do so and caused side effects. Although I actually really liked this new electrophysiologist, he made big promises; promises he should have never made.

He started me on Corlanor, and told me verbatim this would be a miracle drug. As a skeptic with an asshole for a body I didn’t really believe him, but I was hopeful. I hadn’t done much research on IST, surprisingly since I love to research things, but now I have a million questions, most of which probably don’t have answers. Here are my questions, so if for some reason you have answers or have IST I’d love to hear them!

  1. Is IST a form of Dysautonomia?  The internet is giving me mixed signals
  2. What are other treatment options if beat-blockers, calcium blockers, and corlanor don’t work?
  3. How could this affect my laundry list of symptoms that no one seems to have an answer for?

Unfortunately my body is not liking the corlanor at all. My pulse is all over the place, sometimes “normal” around 75, and other times I’m still very much tachycardic at 120. It has also caused me to become extremely fatigued, hypotensive, and dizzy. Pretty much all day Saturday and Sunday I couldn’t do anything because I was so out of it. I started to get super disoriented (which does happen to me sometimes without medication) and couldn’t formulate sentences or comprehend anything I was trying to read. I’m on the lowest dose of this medication so I don’t think we can make this work.

I decided to stop taking it Sunday night, because I have a busy school week this week and I definitely won’t be able to go to school with all these side effects; It’s also not safe for me to drive when I’m so out of it. As far as I’m aware this is the last option I have to treat the IST, which is incredibly frustrating. I can feel my body progressively getting worse and returning to a dysfunctional state, which really scares me.

So far in the six weeks I’ve been in school I’ve only missed one class and it was for the electrophysiology appointment. I’ve been pushing myself incredibly hard and studying a ton, but if my health gets worse I’m afraid I’ll go back to missing school all the time. I just really don’t want to lose the progress I’ve made or have to leave school again. Maybe I’m thinking about this too much, but it’s really hard not to. We’re going to call the doctor today and see what he says about the side effects; I’m supposed to have a follow up on November 3rd, but it looks like I may need to see him sooner. I also have a gastroenterology appointment on October 18th with a new doctor, so hopefully that will bring some answers for my GI problems.

As for the migraines and daily headaches, I’m not sure I’m ready to go back down that road again. I’m feeling really emotional right now and the lack of control I feel over the situation is getting to me. I know that I can handle this because I’ve done it so many times, but honestly I just really don’t want to feel like like crap all the time and not be able to function. All I can try and do is hope that the electrophysiologist will have some ideas and the gastro appointment will go well.

I hope you all have a good week!

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My First Pride Experience 

This past weekend I went to Pride for the very first time!

On Saturday my sister and I went to the festival which consisted mostly of booths and they had a stage where different people performed. I got to see Alyssa Edwards ( a drag queen from Rupaul’s Drag Race Season 5) perform which was so cool! I’ve been wanting to see a drag performance for a while, but since I’m still a minor there aren’t any places near me that I could go to.

The festival was really fun, and it was cool to see a community of people being so unapologetic while living in a conservative state. We’re lucky that Dallas is one of the more progressive areas of Texas, but the state as a whole is still very conservative. Lots of great organizations like GLAAD, HRC, ACLU, and Equality Texas had booths, as well as some really cool queer owned companies!

Sunday was the parade, which is what I was most excited for. I was planning to just go with my sister, but last minute my parents decided they wanted to go too. To be completely honest I was a little apprehensive about having them come, because as open as they are, there are some things I thought they just wouldn’t understand. However, I was proved wrong and they had a great time!

It was SO hot on Sunday and right before the parade started I got really sick. My stomach began to hurt, my heart started racing, and I got that impending sense of doom that let me know I was going to pass out. Luckily there was a Walgreens just right there so I was able to stumble in and sit in the air conditioning for a few minutes, and got some Gatorade to try and bounce back. In around fifteen minutes I felt sooo much better and was able to enjoy the parade. It’s crazy how quickly things turn South for my body and how quickly they can bounce back!

Although a lot of the parade floats were catered more to gay and lesbian people, most of them celebrated the community as a whole. I saw a ton of trans pride stuff, and a decent amount of asexual pride stuff as well. Hopefully in the future Pride will become even more diverse, because everyone deserves to proud of who they are, especially when they aren’t one of the more well-known genders or sexualities.

I can’t wait to go to many more Pride events in the future. Next Pride I’ll be old enough to participate in a lot more, so that’s exciting. I feel so incredibly lucky to have such a supportive family. Maybe next year I’ll even have a good friend group I can go with!

Did you go to Pride? What was your first Pride experience like?

 

Older Siblings Leaving for College

I have two siblings, one brother and one sister, both older.

As of recently I have now watched them both leave for college, and have experienced the  being the much dreaded left behind younger sibling. Both experiences felt different for me, but it’s always tough to watch your siblings move on in life without you.

My sister went to college when I was starting eighth grade. Her last two years of high school she took on a lot of responsibilities and was really busy, so I didn’t see her a whole lot. I was also really sick and spent most of my time in my room, so that contributed to the situation as well. My sister and I are polar opposites and butt heads growing up; the five year age gap also didn’t help. When she left I was sad because I knew life would never be the same, but it wasn’t particularly devastating since we didn’t spend much time together anyway. It was hard to watch her move on, but it was more jealousy than grief. Now that she’s gone we have a much closer relationship and communicate with each other more than we ever have.

My older brother left for college mid August and this time things were different. He did two years at community college and lived at home, so we didn’t have the typical send off after high school was over. There were points in the past six months that I didn’t think he’d even try to apply to a university, let alone get in and decide to actually go. When the time came for him to move out it felt surreal. Now I was going to be the only child in my house. I spend the majority of my time alone and now that time will be even longer since he’s not around.

There’s a million selfish reasons why I didn’t want him to leave, but there’s also some concerns fueled by love. He’s a type one diabetic and the thought of him going so low he passes out and no one finding him or him not taking care of himself is nauseating. I may be his younger sister but I want to protect him and make sure he’s safe.

People often think of parents having a hard time when their children go off to college, but siblings can have a hard time too. Living with siblings verses just living with your parents is very different, and is a hard change to make. For me it’s also hard to watch my siblings move on, because I question if I will ever be able to do the things they’ve gotten to do due to my health.

I know so many people (especially people who only have one sibling who’s older) who had a really hard time watching their siblings go to college. It’s definitely a huge change for the whole family, and can be a rough transition. If your older siblings are leaving for college soon or just recently left, know that it will be hard in the begining but after a while a new normal sets in.

 

 

 

Starting School & Declining Health  

This week was my first week of being a full time college student!

I’m taking five class, which translates to 13 hours. Since this is my first semester (besides the one summer class I took) I’m taking the basics: Algebra, Biology and Lab, US History, and English.

This week has been a bit of a whirlwind. My health has been declining some, so I had a doctors visit on Monday after class. ( Warning TMI) She’s putting me on a new medication to hopefully help with a new problem I’ve been having-  passing undigested food in my stool. I really need to go see a gastroenterologist again, but I honestly just don’t want to. I know I probably need to do another colonoscopy/endoscopy and I don’t want to do that. For now I’m going to try the Colestid and see what happens.

Monday traffic at my school was TERRIBLE! I left my house at 9:15 and my class doesn’t start till 10:00, so I thought I had more than enough time. It only takes me 13-15 minutes to get there, so I had thirty minutes to park and find my class. When I got to the parking lot there were at least 150-200 people circling the parking lots looking for a spot. I honestly wasn’t really sure what to do. I circled every parking lot at least three times, and as the clock creeped closer to ten I got really nervous. Professors are understanding when people are late on the first day, but I still didn’t want to make a bad first impression, even if there were circumstances out of my control. Luckily I saw a guy come out of the school and I was able to stalk him and take his spot. That was at 9:55 so I had five minutes to walk tot the other side of the school and find my class. I made it to class on time though, which seemed like a miracle.

The rest of the week I gave myself an hour to get to campus and parking wasn’t really a problem. I had to walk really far, and wait around an hour for class to start, but at least I had a spot. My classes have been good, and overall haven’t given me very much work. I’m sure that will change soon though. Over the weekend I have some work, but since it’s labor day weekend it isn’t anything unmanagable, especially since I have three days to do it.

With my health getting worse, the reality of being in school and being chronically ill really hit me mid week. I’ve done the whole being chronically ill and going to school thing for 5 1/2 years and it’s getting old. I feel like I work so hard and get nothing in return. I’m trying to be positive and go into the new school year optimistically, but when things go south it feels more painful when I’ve been optimistic. Another big change is being around people the majority of the day. Since I’ve spent most of my time alone since becoming sick I’ve developed some social anxiety that makes being in public for extended periods of time emotionally exhausting (not to mention physically exhausting from everything else) and overwhelming.

Even if this is going to be a rough semester like the years before I’m grateful to be in a place at the moment that at least let’s me try to continue my education. Back in May there was no way I’d be able to go to school at all. It’s crazy how much my health can change so quickly. It declines rapidly and improves rapidly, I just never know which one to expect! Are you in school/ working? Do you have any Fall plans?

Let me know!

Lots of Love,

Alyssa

NYC Trip: Day 1-2

If you’ve wondered why I’ve been a little MIA this past week, it’s because my family and I went on vacation!

Day 1:

Our flight took off at 8:30am, and it’s a bit of a drive to the airport, so we left at 6:30am. I can’t remember the last time I was up at 6:30! Airport security went really well. The TSA agents usually harass my brother since he’s a type one diabetic and uses both a continuous glucose monitor and an insulin pump, but this time they were really nice about it. The flight went well and we landed at Laguardia airport. From Laguardia it was about a thirty minute Uber ride to our airbnb, which was in Hell’s Kitchen.

Our apartment was 800 sq. feet, so it was a bit of a squeeze with four people, but I think we all managed pretty well. We landed at around 2:00 pm est. so we were pretty hungry and ate lunch at a restaurant called Vynl that was right down 9th avenue. We didn’t have anything planned for day one, so we decided to walk around and get a lay of the land. Me and my mom went shopping, or at least we tried to haha. We got lost and ended up walking for six miles. We did however eventually find the stores we were looking for and I got two new shirts for the upcoming school year. During our time being lost we accidentally ended up by Trump Tower, and given everything that’s currently going on I felt compelled to do this…

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That evening we ate Turkish food at a great restaurant called Istanbul. After dinner we walked to Times Square. Times Square was so different than I had always imagined it. It was basically just a ton of screens and thousands of people staring at them in a trance. Honestly I found it kind of odd, but I enjoyed seeing such an iconic place. We walked around some more and then called it a night since we were all pretty tired.

Day Two:

Day two began bright and early again because we had tickets to go to the Statue of Liberty and Ellis Island. We had planned to take the metro, but we walked to the wrong station and in order to get there on time we had to take an Uber. Liberty Island was really nice! I was shocked at how small the statue of liberty actually is; I thought it was at least twice the size. Either way it was cool to see a symbol of such a huge part of American History.

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Next we went to Ellis Island. The only thing there is a museum about immigration, so we walked around the museum. I always feel like the best way to visit museums is when you have lots of time and are in the right headspace. It was really busy there, so it was hard to get into it, but the time we did spend there was fun, and it was cool to learn about the history of immigration in the United States. They had some audio recordings that would play when you walked by certain parts of the set, in order to try and give you a taste of some of things immigrants heard when they first arrived in America. A lot of the recordings said things like, “Go back to where you came from.” It’s incredibly disheartening to know that this still happens to immigrants everyday in America.

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After we got back to the city we decided to take the metro back to our apartment. Since it was a Sunday afternoon no one was taking the metro, and it was really quiet. For lunch that afternoon we had NY style pizza at a little shop in Hell’s Kitchen. That afternoon we walked around more, (this is a common theme lol) and then got ready to go see The Book of Mormon on Broadway. The Book of Mormon was such a fantastic show! It was hilarious, but also touched on very real issues within religion. I highly recommend seeing it!

 

This was my first time visiting NYC and I thoroughly enjoyed it. Travel days 3-5 will be up soon!

Have you ever been to NYC? What was your favorite thing you did there?

Ragged Doll

I am a ragged doll

Dropped in the mud too many times

Beaten, broken, and stained

 

I am a ragged doll

Cast aside

Sprawled out in the bottom of the toy chest

Bending beneath the weight of better newer toys

 

Toys that haven’t been stained

Haven’t been dropped in the mud

Haven’t been broken

 

I spend my nights awake

Wondering if someone will ever want this ragged doll

This ragged, broken doll

 

Some days I appear to be new

My porcelain skin has yet to start crazing

When I shatter will you still pick me over the other toys?

 

I’d want a shiny new doll if I were you

These stains are off putting

And these chips are more trouble than they’re worth

 

In a sea of shiny toys

Who would pick this ragged doll

This ragged, broken doll

Living in the Moment

Living in the moment is something I often have trouble with.

Life these past five years has not gone as I planned by any means. I feel like I’m always looking to the future when “I feel better” or “feel happier” thinking life will better then. Instead of trying to enjoy this chapter in my life, I’m always looking ahead.

I started college this summer at my local community college, and it’s been hard to enjoy it. I can’t help but think about how I “should have” graduated high school and “should have” gone to a four year university right away. Those things just aren’t going to happen for me, and I know I need to get over it. I’m guilty of judging people who’ve gone to community college in the past. Always assuming they screwed around in high school and so they couldn’t go anywhere else. Now looking back I realize how prejudiced and rude that was, but I still push those stereotypes on myself.

I’m grateful that my health is in a place that let’s me be able to start college full time in the fall. I should enjoy this time I have feeling well, since I never know when I’ll flare again. Honestly I’m afraid of my next flare. As the fall school year becomes closer and closer, I’m scared I’ll flare right when classes start. I really want to go to school full time this year, and I want to be successful. Instead of enjoying feeling well, I’m often worried and thinking about all of that what-ifs.

Sometimes I just need to take a deep breath and remind myself of all the wonderful things in my life. Sure, there’s gapping holes that I’ve desperately wanted to fill for years, but I have so many amazing things in my life going on too. Even in these times when I’m feeling better I can’t help but feel the exhaustion of my past. I’m only seventeen, but living seventeen more years sounds horrendous. My life is supposed to be “just beginning,” but it already feels so long.

I want to live in the moment.  I want to enjoy the now.

It’s just a lot harder than I expected it to be.