Finally Having a Diagnosis

After visiting the Mayo Clinic, I finally have a diagnosis for my chronic health issues. I’ve been waiting six years for a diagnosis, but the experience of actually receiving one has been quite different from what I imagined. Maybe this is because I was diagnosed with so many things all at once, which quickly became overwhelming. I’ve definitely learned a lot in the past two months, and have had many things to contemplate.

Receiving a POTS and Dysautonomia diagnosis was in no way surprising. I’ve been tasking Doctors to test me for autonomic conditions for two years. After I did the autonomic testing, I received a phone call the following week to tell me the results, which did in fact confirm the diagnosis. I instantly felt relief. There was no more guessing, and no more begging doctors to listen. I also love being right, so I felt quite smug although this is not the kind of thing you want to be right about. I was relieved to know that I didn’t need to have an ablation or a pacemaker.

Then frustration hit, because dysautonomia is not something that is easy to treat, and there just aren’t many options. I’ve already taken every medication used to treat POTS when they thought I just had inappropriate sinus tachycardia, and they all failed. I’m trying to have hope that a few lifestyle modifications will help, but realistically I know that many people still struggle after making those changes. I made as many changes as possible right away, and so far I’ve only felt worse. I do think (or at least I want to believe) that some of these things will help at least a little bit, but it’s going to take more like six months to see any results.

The gastroparesis and pelvic floor dysfunction are two things I definitely didn’t think I had. I had always associated gastroparesis with a lot of vomiting, and since I rarely vomit I didn’t think it pertained to me. Now that I have the diagnosis I can recognize quite a few of the lesser known symptoms that I have, but never thought much about. I also didn’t realize just how many of my symptoms corresponded with eating until I started paying more attention to them. When your body is constantly doing weird things you don’t always voice all of them. When I do bring up a new symptom to my parents, they always say, “When did that start?” and I’ll be like,” well it started like six months ago…” because if I told them everything that my body does that it shouldn’t do I would never stop talking.

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Leaving school because of all of this has been really hard. My education is so incredibly important to me, and to have to pause it once again has been difficult. I also hate being unproductive, but many days I just don’t have a choice. I am planning to return to school in the Fall, and maybe even take a Summer course online. I don’t know if this is foolish, since I’ve only gotten worse in the past two months, but I need something to look forward to and to work hard for.

When I was undiagnosed, I never knew what the future held. That was both terrifying and relieving. It left a tiny glimmer of hope that maybe this would all end one day. Now that I know it won’t, it’s not the easiest thing to cope with. Realistically my life will probably look a lot like it does now forever. I’ll have good days and bad days, I’ll flare and I’ll have months where I’m able to be around 60% functional. I’m still trying to figure out what I should do about my career path, knowing my body cannot handle a job that requires me to do much physically and that I cannot work long hours.¬† However, there’s always the possibility that things will truly get better, so I don’t want to hold myself back.

I try not to think too much about the possibility of things getting worse, but it’s always kind of hanging around in the back of my mind. Having a diagnosis hasn’t necessarily given me much peace of mind, but I am glad that my treatment options can be tailored towards the cause of my problems instead of just guessing. I’m still working on the whole “positivity” thing. It doesn’t always come naturally to me and I think I just need some more time. Overall, I am grateful for the answers I have received. I have spent too many years begging for any answers, so to have figured out quite a few of my issues has been indescribable. It’s still hard to wrap my head around the fact that we know what’s wrong. For so long I was a “head-scratcher,” a “difficult case,” and a “medical mystery.” I’m still just a girl trying to figure it all out, but at least this girl has some explanation for it all.

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Life Update: Withdrawing from College

This semester has been incredibly rough for me.

Some of it I have shared with you, like documenting my journey at the Mayo Clinic, but there’s been a lot going on that I haven’t talked about yet. My health has been very poor since around the last few weeks of Fall Semester, and has been continuously getting worse. This was one of the major reasons I chose to go to Mayo in the middle of Spring semester. Unfortunately I missed a lot of class before my trip, and then a whole week for the trip (my first trip was during spring-break so I didn’t miss any class for that). While I was successful in obtaining multiple diagnoses, the treatment options are very limited.

As of right now, they are mainly focusing on the lifestyle changes; things like exercise, following the gastroparesis diet, and eating tons of salt. These things may or may not work, and if they do work it’s going to be months before I see any improvement. Since returning from my trip, I’ve only become more symptomatic and much less functional. I’m honestly not sure what to do right now, since I know if I contact the Mayo doctors they will probably tell me to just keep trying to do these things since it hasn’t been long enough to see results, but at the same time my body is incredibly weak and doing simple life tasks can be very difficult.

Missing this much school has seriously affected my grades. Some of my professors have been great, and others have been awful. I have disability services, but they aren’t very helpful and professors have found loop holes that essentially disregard any accommodations I’m supposed to have. It’s crazy how little legal protection disabled people have, but that’s a whole nother can of worms. I made the decision to withdraw from college, since my Spring semester grades were going to tank my GPA. I really wanted to only withdraw from the two classes I was doing poorly in, and stay in the two classes that I had nearly perfect grades in, but that isn’t an option at my college.

This also means I will not be able to transfer to a University in the Fall. I won’t have nearly enough hours after I lose these 14. Now, I’m going to have to do at least one more semester at community college, maybe two. I’m trying my best to remind myself that I’m only 18, so I’m actually ahead of my peers by at least one college semester, but withdrawing makes me feel so behind. There’s a lot of emotions to process, and I’m doing my best not to fall into a pit of despair, but it’s been really tough. I think hope and positivity are important when it comes to living as a chronically ill person, but I also think it’s okay to recognize that some situations just suck.

I’m planing to return to college in Fall, or even take a Summer class if I’m able to get my health under control enough. As difficult as this decision is, I know it is the right one. This is not the first time I’ve had to withdraw from school, as many of you know, I started this blog right after I withdrew from high school in November of 2016. It’s crazy to think that almost 18 months later I’m having to do the exact same thing. I’ve got to say it doesn’t hurt any less the second time around, but I know from the first time that it will get better.

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.

 

Advice for College Freshman

Since my first semester of college just ended, I thought I would share some of the things I learned. For reference I go to a local community college, I’m a biology major, and I got a 4.0 my first semester:

  1. It’s literally just lecturing most of the time

Maybe this is because I only look core classes my first semester (history 1301, biology 1406, english 1301, and math 1314), but all we ever did was lecture and test. In high school you do a lot of busy work and activities, but there is no free time or “fun” days in college. The only class that broke this rule was my English class, where we did a lot of group discussion.

2. Give yourself time in-between some of your classes

Monday, Wednesday, Friday I had History from 10:00-10:50, and then my next class, Algebra, wasn’t until 12:00-12:50. I used the hour in between them to study and do homework, and it was so helpful! It was a designated hour to just work, and it really helped me stay on top of everything. It can be difficult to work at home, and it’s easy to talk yourself out of staying after class to work, so making your schedule with breaks in between is ideal.

3. Take good notes

This sounds like a no-brainer, but honestly it’s so important. I basically spent the entire semester trying to figure out what note-taking strategy worked best for me. I would recommend doing hand written notes if you’re able to, because I definitely retain more info when I write something verses when I type it. I also really like the strategy of condensing your notes down to key information that you’re still working on learning before a test or major quiz. It’s much more effective to study the most important/most difficult information alone, than it is to study everything your Professor lectured over.

4. Take advantage of your resources

This is something I wish I would have done more of. At my college, we have a writing center, and free math tutors which I never used, but should have. Having free resources is something you will probably never get again after college, so take advantage of them! Also, if you have a disability like me, sign up for disability services. They may not be able to completely accommodate you, depending on your needs, but in my case they were super accommodating and happy to help.

5. Do Practice Quizzes/Tests

Taking practice quizzes and tests online is the main thing I used to study. Just reading and highlighting your notes if often not enough. My biology textbook came with a code for online study materials, which is what I used to practice. I like practice tests because you not only need to know the information for your exams, but you also have to know how to apply it.

 

These were the most important things I took away from my first semester in college, academically speaking. Are you in college? What are your tips for college freshman / college students in general?

Adapting with Chronic Illness

Sometimes friends and family members will see me and say, “wow you must be feeling better!” What they don’t realize is that some days I’m not doing any better than I was six years ago, I’ve just adapted. In the beginning it was so incredibly tough to even get out of bed. I was a child, and had never truly had to persevere before. At the time, I was trying my absolute hardest to function, but it was all new to me. Now I’ve adapted. I go to school and church with extreme pain and fatigue. I do homework as I run back and forth to the bathroom or grimace in pain. When I’m in a state that I’m able to force myself to function, I seem very “normal.”

This semester I’ve made it to class more than I ever have in the past six years. As of now, I’ve only missed four class periods total, and three of those periods were for doctor’s appointments. Part of this is because I felt decent at the beginning of the year, and so it was fairly easy to make it to class. Now I’m struggling more, but I’m still forcing myself to go to school. Just because I’m able to function, doesn’t mean it isn’t hard. Yes, some days it is easy, and I feel incredibly lucky to have easy days since so many people do not get them. I used to not get easy days, and it was so incredibly hard. However, some days I’m trying not to pass out in the middle of math class, or holding down vomit in history lecture. My body is still very broken.

I’ve also taught myself how to “pass as abled.” I can put on the makeup and clothes, do my hair, and paint a pleasant expression on my face. Most people aren’t very observant and buy it. By now I should have an Oscar for my performance! However, if you look really close you can see the exhaustion in my eyes and hear the slight pain in my voice slipping through. One thing chronic illness has taught me is to be observant. Things are often not as they seem, and if you really pay attention to people, you can pick up on so much. I’ve learned how to appear fine, but other people have not learned how to see through it.

In many ways, I’m so glad I’ve adapted! I’m able to handle everything chronic illness has thrown at me, and I have strength to continue to fight it. I’ve learned how to be more functional, and now I’m able to continue my education. Sure, I don’t do anything else but go to school, do homework, and recover from it all, but I enjoy succeeding in something. It does make me sad sometimes that this has become my normal. Pretending to be fine, when your body doesn’t work right is exhausting, and can be incredibly lonely. At times, I’ve felt angry that I even had to adapt, that I had to accept this life as “okay.” Chronic Illness is a constant cycle of grief and acceptance, and adaptation is a huge part of that.

 

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.