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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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?

 

When Misogyny Kills

September 10th, 2017 Meredith Hight and seven of her friends were shot and killed in her home by her husband who she was divorcing. She filed for divorce back in July and hadn’t seen him much since. This past month he came to pick up some of his things while Meredith was home. He saw how happy she was and how much she was thriving without him, which led him to murdering her and her friends.

While this particular news story has layers of conflict and multiple issues going on, the thing that really stands out to me is how he decided to kill her after seeing how happy she was without him. It became obvious to him that Meredith didn’t need him, and in fact was doing better on her own and that enraged him.

How dare she live a fulfilling life without a man by her side?

How dare she stand up for herself and speak out against his abuse?

Domestic violence is not the only way the misogyny kills. Systematically our health care in America constantly mistreats and under-diagnoses women’s health issues and belittles them. Rape culture and toxic gender roles can be another way misogyny kills.

In a lot of these situations the combination of hyper-aggressive men, due to toxic masculinity and gender roles, and misogyny is what leads to the actual murder of women. The hyper-aggressive side leads to men feeling angry, entitled to women’s bodies, and makes them controlling as well as manipulative. The misogyny adds to the outrage when women don’t behave according to their standards, and reinforces the feelings of dominance.

Misogyny is not just an inconvenience or something “man hating women” made up.

Misogyny is real and it claims the lives of too many women.

 

Domestic Violence Help:

US: 1-800-799-7233

Canada: 1-877-336-2433

UK: 0808-2000-247

 

 

Here’s To You – Reblog

I really enjoyed this post from ashelylillyblog as a response to everything going on with DACA. Immigrants make our country great, and we should be recognizing their contributions instead of condemning their origins.

[The American Dream is an illusion. We cannot pretend the United States was founded on dreams and morality. In fact, it was founded on murder, slavery, and theft of entire regions of land and valuable pieces of Native culture. It was founded on the oppression of people of color, women, and anyone who did not […]

via Here’s To You (a love letter to immigrants) — ashleylillyblog

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.

 

 

 

The Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?