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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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?

 

Being Successful in School while Chronically Ill

School and chronic illness are two things that do not mix well. From the constant absences, and annoyed teachers, to the  piles of make-up work the whole experience can be really difficult, and quite overwhelming. The majority of the time I’ve been chronically ill (roughly 5 1/2 years) I’ve also been in school. Here are some of the things I do to try and be successful in school:

  1. Organize Everything

Having a planner or agenda is important for anyone in school, but is essential for those who are chronically ill. Having to keep up with regular due dates, make-up due dates, and study hall times can be overwhelming. If you have brain fog like I do, it’s also easy to forget things, so writing everything down is important. It also helps you prioritize certain things in your work load.

2. Email Your Teachers

Inevitably some teachers aren’t going to like you if you’re absent all the time. It causes them to have to do more work and they feel like you’re a nuisance. Emailing all of your teachers when your absent helps show initiative and helps you get school work even when you’re not there. I also find that telling them when you’re in the hospital is important so that they know you’re definitely not going to be in class for a few days. Keeping everyone is the loop is the best to make sure you’re not falling too far behind.

3. Push Yourself…

There will be days that are ROUGH. You know you have an exam, a quiz, and a group project presentation that day but your body is rebelling. Sometimes when it feels impossible, you actually can do it. It will suck, it will be painful, but it is possible. You probably won’t have a good day, but you tried as hard as you could.

4. … but not too far

There will also be days that it is impossible. Do not ignore big warning signs from your body just to make it to class for a test. Do not send your body into a huge fit (well a bigger fir than it already is) because of the inner and outer pressure to conform to societies ideas of “successful.” A fulfilling life does not have to include a formal education or a long career. Also missing a few days of school will not keep you from getting the things you want. Will it make it harder? Sure. Will it take longer? Probably. Doing what’s best for your body is the most important thing.

5. Take Advantage of Disability Services

There is no shame in asking for help. Although it will never be an equal playing field between you and your peers due to your chronic illness, disability services can help tremendously. They help especially when it comes to absence policies and dealing with teachers who don’t understand your situation. You have rights and your school cannot infringe upon them just because they want more money from the state. **

 

These are my five tips for being successful in school while chronically ill. Do you have any tips for other students with chronic illness? Let me know!

 

 

** Schools often have a 90% rule where you have to be there 90% of the time and if you aren’t you have to do make-up hours. They want you to be there that much because for every student that makes it to school 90% of the time they get a certain amount of money. Not only is it ableist to force students to stay before and after school if they are absent due to illness, it is also illegal.

 

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

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?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Why Do Doctor’s Offices Suck So Much?

This is purely a rant on why I hate the receptionists in doctors offices.

 

Today I had an appointment with a sleep neurologist. My PCP referred me to him, and since I’ve had so much trouble with sleep and fatigue, I thought seeing him would be worth my time. His office is in the city so it’s a 30-45 minute drive depending on the traffic, and we had an 8:30 appointment, so I had to be up way earlier than I normally am.

Fora normal person this wouldn’t be that big of a deal. My body however, hates being up early. Whenever I get up before my body is ready I feel nauseous and get a headache. It’s also inevitable that in the afternoon I’ll crash, hard. Since this appointment was important though, I was willing to risk it.

After driving 45 minutes down there, we arrive to find out they cancelled our appointment. Apparently they had been calling the wrong phone number to confirm the appointment. Everyone makes mistakes, so this wouldn’t be a huge deal, but they had already called my mom multiple times on the correct number, so they did at one point have the right number. We also confirmed the appointment on their online patient portal.

The receptionist also tells us that we’re out of network and they don’t take our insurance. They should have never agreed to see me if they’re out of network. She tells us we could see him, if we paid $250 out of pocket. No ones time, in my opinion, is worth that much for one doctors visit. Since they had taken it upon themselves to cancel the appointment though, we wouldn’t even get to see him today.

Now that’s all bad, but they apologized right? Wrong. Both receptionists said it wasn’t there fault and it must have been someone else. We left because there is no use in arguing with incompetent people. An apology would have made this situation much better, but even when my mom called to try and talk to someone else, they didn’t apologize nor did they care. They even said that they had never heard of online conformation. To which my mom replied, “well then it sounds like you have another problem don’t you?” which made me crack up. They also repeated back her phone number wrong to her three times, which means after going to the office and talking to the receptionists there, they didn’t even change the number in the computer system.

Unfortunately this isn’t the first time this has happened. It’s at least the third time we’ve gone to a doctors office only to find out they canceled our appointment/didn’t take our insurance/never made the appointment in the first place. I understand that it’s a boring job, and that people make mistakes, but this was a long series of mistakes (probably made my multiple people) and they way the handled it was incredibly unprofessional. “I don’t care we screwed up, sucks for you” was the general attitude.

The office manager did called call my mom, and was apologetic. He’s trying to get us in on Monday and is giving us a discount. More than wasting my time, waking up early, wasting my moms time, and making her take half a day off work to take me, not having answers is the worst part. I’m happy this situation seems like it’s going to have a positive ending, but they don’t all turn out so well in the end.

Ugh. What are your experiences with difficult doctors office?

Have you ever showed up to a doctors office only to find out you don’t have an appointment?