Why “I’m just not very political” is an Ignorant Statement 

Few phrases get under my skin as much as, “I’m just not very political” does.

First of all, if you don’t care about politics you’re probably incredibly privileged. If it doesn’t matter who’s in power to you, you’re probably not the one getting your rights taken away, or having to fight to have rights in the first place. Even if the majority of politics “aren’t going to effect you” you should still have an ounce of humanity in you to care about other people, and how politics might affect their lives.

Most people don’t get the choice to not be involved in politics. They have to fight for basic human rights and to continue to have the right’s they’ve already been given. Being complacent isn’t an option. Minorities having been fighting the same fight for hundreds of years, and know that they can’t back down even when they’re tired or its inconvenient.

“I’m not just that political” is such a cop-out statement. As if not caring about politics excludes you from having to care and making decisions that effect other people’s lives. For example, I know a lot of people who refused to vote in the last election because they didn’t like Trump or Hillary. Choosing not to vote does not mean that you aren’t responsible for the outcome. Voting is your civic duty, and if you are able to vote and chose not to, then you are part of the problem.

Many people who claim they “aren’t very political” seem to feel a sense of moral high ground, as if caring about politics is wrong or stupid. I think not caring about politics is wrong and stupid. Attempting to exclude yourself from politics, does not make you a better or more mature person. I would actually argue that it’s incredibly immature to not participate in politics. Hard decisions have to be made, rather you like the candidates or not, and is the last election it should not have been a hard decision. No matter what country you are a citizen of, you should always be actively trying to make it a better place. If you are lucky enough to live in a democracy, then you ought to play a part in politics, and put your ballot where your mouth is. Also, if you chose not to vote, you have no right to complain about politics. You had a chance to better our country, and instead you sat idly by being complacent.

Everyone should vote.

Everyone should care about politics.

Everyone should want to move forward and better our country.

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Weight Fluctuations Due to Chronic Illness

I wrote a post all the way back in May about my journey with weight fluctuations due to medication. At the time I was going to the gym 5-6 days a week, and eating incredibly healthy. So, what’s happened since?

I started trying to lose the weight I gained on Gabapentin back in April, and since then I’ve lost a little over 30 pounds! Honestly I can’t believe I’ve lost that much, and I never really believed I’d be able to do it. As I mentioned in my original post, I’ve watched multiple family members struggle with their weight, which was discouraging. Now that I’ve lost the majority of the weight I gained, I feel so much more like myself. After the weight gain, my body didn’t feel right and I felt uncomfortable all of the time. I don’t think we should equate beauty or self-confidence with weight, and I recognize some of these thought aren’t exactly body-positive. However, losing the weight has lifted the uncomfortable feeling that was dragging me down.

As of right now, my health is no longer in the place that I can work out as much as I was. The combination of school and declining health, doesn’t leave much time for anything else. I’m hoping once I get my IST under control, I’ll be able to work out again. I’m still eating pretty healthy, but I’m not as crazy strict as I once was. Every one in a while you’ve gotta live a little, ya know? Plus, you can only eat so many scrambled eggs and apples before you go crazy.

It will be a year in November since I stopped drinking any carbonated beverages or caffeine. While I wasn’t losing weight at the time, I do think that decision has made the whole process easier. Plus now that I’ve been doing this for a while it’s much easier. Even though I’ve loosened the reigns some I’m still continuously losing weight, and trying to live as healthy of a lifestyle as possible. Right now my main goals are to lose around 10 more pounds, and hopefully be able to workout again soon.

Chronic illness makes weight loss/gain super difficult, but not always impossible. If you are currently trying to lose or gain weight, don’t feel discouraged! It may feel incredibly slow, but the fact that you are trying your best is all that matters. If you’ve been working hard but your health gets in the way, that’s also okay. Sometimes you’ve got to take a break, or slow down in order to take care of yourself.

Do you have any experience with weight fluctuations due to chronic illness or medication?

I hope you are all doing well!

Gastro Appointment and Action Plans

I had a super busy week last week at school with quizzes, exams, and a lab for biology. I felt way less prepared for these tests than I did for my first round of tests, but luckily I actually did really well on everything. On top of all of the school stuff my health is continuing to spiral, and I’m having near syncope episodes where I become disoriented everyday, and they’ve gotten more severe.

One positive thing that happened last week is that I finally saw a new Gastroenterologist! I really liked him, which to be honest I wasn’t expecting to, since I saw two other doctors in that practice when I started to become chronically ill, and they thought I was faking it. He however, was very kind and had a few ideas on where to go next. He thinks I might have post-infection IBS, since I had some weird blood work five years ago that said I had a parasite. I thought this was a false positive since the parasite mainly lives in Africa, but apparently although possible it is incredibly uncommon for that to happen. If i did in fact have the parasite, then it may have damaged my GI tract causing the IBS.

I’ve actually never been diagnosed with IBS, even though all of my gastro symptoms fit the definition. He wants to do a few more tests before calling it IBS, since IBS really is just a nice acronym for “something in your GI tract is messed up but we don’t really know what.” I had some blood work and an x-ray, that I should be getting the results about at the end of this week. If everything looks good, we’re probably going to do an endoscopy since he thinks I might have systemic mastocytosis. I’ve done the tryptase test for MCAS, and it was negative but apparently the best way to diagnose it is by a biopsy of the small intestine, if you have gastro symptoms, or a bone marrow sample. Since I have a ton of gastro symptoms and doing an endoscopy is much less invasive than a bone marrow biopsy, we’re probably going to do that. If the regular endoscopy also fails to bring any good information, we’re considering a capsule endoscopy to make sure I don’t have any disease activity in the part of the small intestine that you can’t see during a colonoscopy and endoscopy.

If you missed my last update, I talked about how I tried corlanor for my IST and it really didn’t go well. This past weekend my doctor had me try it again, but now he only wants me to take it once in the morning every other day. I tried this on Saturday and it made me feel really crappy again, so I definitely won’t be taking corlanor anymore. The electrophysiologist also doesn’t want to see me anymore (even though I only saw him once) and is referring me to the research hospital that is attached to a med school in the city. His office has yet to send the referral, so I hope they hurry up since my heart is becoming quite an issue on a daily basis.

I’m sorry this is quite a Debby-Downer post, but it’s just reality at the moment! I am feeling positive about the new gastroenterologist and I’m hopeful that the referral for a new cardiologist will be helpful. I’ve been pushing myself so hard to make it to school, and get really good grades, so I know my blogging hasn’t been the best. Being chronically ill and being a student feels nearly impossible the majority of the time, so doing anything extra has been out of the question, especially the past two weeks. I’m hoping to post more regularly soon!

I hope you all are doing well!

National Coming Out Day 2017

Happy National Coming Out Day!

For those who do not know, National Coming Out Day began on October 11th, 1987 when half a million people marched on Washington for LGBT Rights. Since that day, October 11th has been used to celebrate coming out and being out. Many people also use this day to come out for the very first time, or come out to a new person/group.

I remember when national coming out day came around while I was still in the closet. I felt a sense of urgency to do it that day, but got nervous and waited some more. National Coming Out Day is not supposed to pressure anyone to come out when they’re not ready, so if you’re in the closet and don’t feel ready – don’t come out today! This day did give me a little nudge to bit the bullet and tell my parents. I think it was beneficial to me to have national coming out day take place during the time I was deciding when to come out.

Part of me feels like we shouldn’t have to “come out” per se. We should be able to just start seeing someone, or have it come up in conversation. A big dramatic “let’s sit down and cry moment” isn’t always necessary or wanted. If that is your experience, there isn’t anything wrong with that, coming out to my parents was mildly dramatic, but if that’s not the experience you want then it doesn’t have to be that way.

For me, being out is liberating and incredibly important. I always try to be the “out person” that I needed when I was questioning my sexuality. Being out for me can also be very political, especially right now. Having out role models is crucial for people in the closet. It’s also really important for everyone else to see that LGBTQIA+ people are not some far off distant idea, but rather are your neighbors, friends, colleagues, and family members.

I hope everyone has an incredible National Coming Out Day, and is able to celebrate being LGBTQIA+!

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!

Repost- Let’s Queer Things Up: Toxic Masculinity

I really enjoyed this post from Let’s Queer things up. I think their perspective on toxic masculinity is really interesting, and found this post incredibly insightful. Definitely worth the read!

This community taught me not only what toxic masculinity demands of men and masculine people, but also the possibilities that exist outside of it.

via 4 Things the Queer Folks in My Life Taught Me About Resisting Toxic Masculinity — Let’s Queer Things Up!

Gender and Chronic Illness

Most abled people assume that if you get sick there will be a doctor there full of empathy and ready to save the day – this however is not the narrative of many people who have chronic illnesses.

While I personally have never been straight up told I’m faking it, it’s been implied and stated multiple times that I was being dramatic or “just had anxiety.” I feel like it’s important to note that every time this has happened, it was coming from a man. I came to the realization a long time ago that a lot of medical professionals see me as a teenage girl who’s over dramatic and just wants to get a few days off school. This profiling happens before I open my mouth and once that decision has been made in their mind it is nearly impossible to change it.

Many people who end of being diagnosed with endometriosis or ovarian cysts are told that it’s “just their period” and that they need to learn how to deal with cramps.Women and feminine presenting people are disproportionally targeted when it comes to doctors disbelief of their symptoms. Men and masculine presenting people on the other hand often try to “tough it out” and don’t go to the doctor until long after it’s necessary due to being afraid of not “taking it like a man” ; or they do go to the doctor and the doctor essentially tells them to “man up.” These gender stereotypes are incredibly harmful, especially within the medical world.

Back in February of this year I had an electrophysiology study, and the experience was less than pleasant. After the study I had a reaction to the medication they gave me to speed up my heart rate, and my whole body began to tremor. A rapid response team was called and all of the nurses were visibly concerned, and knew something was wrong. The doctor who came in however, was super nonchalant about everything and left the room while I was still having the tremors.

Later the next morning when my doctor (at the time) came to see me he said he thought I had anxiety and that’s why the whole incident occurred. Obviously that was not the case, and he just didn’t want to figure out what is actually wrong with me. There are two conclusions I’ve drawn from this situation: 1) because I’m a teenage girl he thought I was being dramatic, 2) it was going to take time and testing to figure out what’s wrong with my heart (plus I’m considered a “complicated care”) so my situation would not be easy money for him.

This is just one of many events where men downplayed my symptoms / disability and reduced me to “just an anxious teenage girl.” Not all chronic illnesses are created equally and not all experiences with chronic illness are the same. Gender and Sex can be a huge factor is getting a diagnosis, even when your illness has nothing to do with either of those. Have you ever had a bad medical experience due to your gender? Did gender or sex affect your diagnosis process?