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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Reblog- Healthcare Access & Disability

I wanted to share this post from Trailblazing with CP about disability culture, and disability-inclusive healthcare. Amelia does an incredible job of articulating the importance of disability-inclusive healthcare, and how the social definition and medical definition of disability affect how she views her experience as a disabled person.

Access to good quality, disability-inclusive healthcare is a hot topic these days in the disability community, and for good reason. It’s hard to find. A lot harder than you think. Why? Well, a multitude of reasons, honestly. In my opinion, it boils down to a lack of adequate disability awareness training in medical school, a […]

via Healthcare Access & Disability — Trailblazing

Watching Your Family Members Age

Last year my Grandmother was diagnosed with Late-Onset Alzheimers. She is now 77 and her memory has gotten significantly worse in the past few months. Recently, she forgot to take her blood pressure medicine for two days and ended up in the emergency room with crazy high blood pressure. Watching your family member age is not an easy thing.

My mom is having the hardest time with it, and rightfully so as she is her daughter. I’ve never been very close with my Grandparents, so while it is sad and hard to see her struggling, it doesn’t affect me the same way it affects my mom. Her condition became much more apparent to us after my mom visited her a few weeks ago. My Grandparents volunteer to lead a church service at a nursing home in their town and since my mom was visiting them, she went with them to help. My grandmother can no longer play the piano, because she’s forgotten how, but she also forgets that she can’t play anymore. She gets really embarrassed when she tries to play and then realizes she cannot do it anymore, which unfortunately happened on Sunday. She also introduced my mom to the same person three times, one of which she introduced my mom as her son, and my grandmother only has four daughters.

We try to remember that 77 is quite old, and is lucky to have made it this far before the Alzheimers became a major issue. My Grandfather, who is 78, does a great job of taking care of her, but he is also old and is just beginning to deal with some typical forgetfulness that comes with old age. It’s become clear they may need extra help sooner rather than later. I feel like people don’t talk about how difficult dealing with aging family members can be and how difficult it can be one those who are aging, but maybe that’s because people my age tend to not to have to think about that.

Although the validity of the testing has been questioned quite a bit, I had genetic testing through 23&Me done about six months ago (My PCP wanted me to do this to see if I had a certain gene that affects how you metabolize medications, but that’s beside the point). Nothing too interesting came out of it, but it did say I had an increased risk for late-onset Alzheimers. It’s not shocking, but it’s also not something you want to happen. It actually freaks me out more that my mom might get Alzheimers than it does for me to get it. I’m used to having health issues (and I won’t be old for like a reeeeaally long time) but I just can’t imagine her forgetting who I am. That’s a scary thought. However, there’s no need to fret about that now since it’s not happening in this moment.

I do worry about my Grandmother, and my Grandfather. I know it kills him to watch her slowly slip away. They’ve been married for nearly 60 years, and have been together since they were 18. She’s obviously struggling too, but she doesn’t notice when she tells the same story repeatedly or recognizes someone incorrectly. In some ways it’s better that she doesn’t know for her sake, but it only makes it more heartbreaking to think about for everyone else.

I’m learning aging isn’t  fun for anyone involved.

 

Day of Silence 2018

TW: Brief mention of suicide and mental health

GLSEN’s Day of Silence “is a student-led national event where folks take a vow of silence to highlight the silencing and erasure of LGBTQ people at school.” The Day of Silence was created by a group of students at the University of Virginia in 1996.

“Nearly 4 in 5 LGBTQ students don’t see positive LGBTQ representation in their curriculum, nearly 9 in 10 experience verbal harassment, and almost a third miss school for feeling unsafe or uncomfortable. The Day of Silence is a national movement to highlight the silencing and erasure of LGBTQ students in school, which demands that school leaders take action to be more inclusive.”

I have never had a teacher speak about LGBTQ+ rights, or even acknowledge that someone they were talking about was a part of the LGBTQIA+ community in my entire life. I never learned about the Stonewall Riots in school, or the AIDs epidemic. I never read a history book that acknowledged our presence. Queer history is so important, and yet it is completely silenced in our education system. This is just one of many issues that leads to silencing and erasure in schools.

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“Safe Schools For All”

In my high school we had a GSA, but I never got up the nerve to go. Just a few weeks after I had come out to my family, an “advertisement” was played on the school announcements  for the GSA. Afterward, the boy who sat next to me laughed and said, “It’s so sad that we actually have one of those.” I felt gutted. Other kids laughed and they continued to make homophobic remarks. Was this a direct attack on me? No, they had no idea I was gay. Did it make me feel ashamed, outraged, and embarrassed? Absolutely.

I wish I could say that I stood up for myself and my community, but I did not. I was kind of scared and hurt, especially since it was all so new to me. Their laughter and bigotry made me feel as if I couldn’t speak up. However, I have had it so much easier than many LGBTQIA+ students; I’ve never been bullied or directly discriminated against. Hearing people say awful things, whether they realize it’s about you or not, is still hurtful.

Far too many LGBTQIA+ students suffer from mental health problems as a result of the bullying and general intolerance at their schools. We lose so many amazing kids to suicide, because of the abuse they face. Marriage equality didn’t end homophobia or transphobia, and it certainly didn’t make the United States treat LGBTQIA+ citizens as complete equals. We still have a long way to go, and we need protection of LGBTQIA+ students.

The Incompleteness of Being Single

In January, I read Rupi Kaur’s poetry book, milk and honey and one poem in particular really stuck out to me.

” you are in the habit

of co-depending

on people to

make up for what

you think you lack

who tricked you

into believing

another person

was meant to complete you

when the most they can do is complement”

When people are in relationships they often introduce their significant other as their “better half.” Before this poem I had never really contemplated how much society tells us we are lacking something by simply being individuals. We are not whole until we’re in a relationship, and a relationship is something we should always desire.

No one can complete something that is already complete. I like the idea of complementing each other. Your significant other should bring out the best in you; they are not the best thing about you. I feel like younger generations are becoming less interested in being in long term relationships and getting married. Independence has become valued over commitment. From a certain standpoint, I understand that. Co-dependence can be toxic, and it’s important to learn how to exist as an individual.

The line, “co-depending on people to make up for what you think you lack” is so profound to me. We should not look to others to “make-up” for anything, but should instead focus on how we can better ourselves. This definitely goes both ways.  I believe people shouldn’t enter into relationships with the mindset that they are going to change their partner. You should accept your partner for who they are, and respect who they are out side of the “us” that you’ve created. You are not the reason they are great. If they were great before you, then they will be great after you.

If you aren’t interested in being in a relationship for any reason, that’s perfectly fine! I find it so odd that the general consensus seems to be that if people aren’t married or at the very least in a long-term relationship by a certain age, then something must be wrong with that person. Having different goals in life is perfectly fine. It’s also fine if you want to be in a relationship, but just haven’t found the right person yet.  “Co-depending” on people to try and compensate for the things you hate about yourself is not healthy, nor will it harvest a healthy relationship. In my eyes, it’s much better to be single, then it to settle in an unhappy relationship, hoping the things you don’t like about them will change, and believing you lack something without them.

Have you read any of Rupi Kaur’s work? What do you think of this poem?

 

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.

March for Our Lives 2018

*Reposted because it accidentally got removed*

On March 24th, I had the privilege in participating in the March for Our Lives. I was originally planning to march here in Texas, where I live, but since I ended up being at the Mayo Clinic on the 24th, I Marched in Rochester, MN.

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“Our Youth are Our hope”

The high schoolers who put on the March did an incredible job! They gave fiery passionate speeches, and were able to organize around 2,000 people to march with them. For a town the size of Rochester, it was pretty amazing. This was my first ever march, and I’m glad I started with one on the relatively small side. Luckily, the March itself was very short, so it wasn’t too much walking.

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” I thought you were pro-life”

I hope we see real political change come from these marches. Even though I have no connection to Emma Gonzales, I feel so proud of her (as weird as that may sound). She is so unapologetically herself, and has stood strong even with all of the hate from republican politicians, while grieving her friends and processing an incredibly traumatic event.

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“ENOUGH”

My one criticism of the conversation to come out of the march, is the lack of conversation around police brutality and gun violence. You cannot ignore police brutality when talking about gun violence, as they are a major perpetrator of gun violence. Black peoples voices have not been highlighted, when they have been advocating for gun control for so long without any one listening. I get them centering the voices of kids affected by school gun violence, particularly mass shootings, as this was the main reason for the march, but gun violence goes so much deeper than that. It would have been nearly impossible to include all of these conversations in one march, and I think it was smart of them to focus the march particularly on mass school shootings, but I do think there should be more discussion about different types of gun violence.

I really enjoyed being able to March… but my body did not. The actual march was only like 0.3 miles, but my body went crazy afterward. I was so incredibly fatigued and exhausted that I could barely move for six hours, and it took me two days to get significant relief. Sometimes with chronic illness you have to chose when it’s worth it to “overdo it.” I knew I wouldn’t do well after this, but it was so important to me. I may have felt like hell afterwards, but the experience of being there and standing up for what I believe in made it completely worth it.