Plan Z : A Poem

Plan Z

 

Plans have never worked for me

All the color-coded lists are only figments of control

These pens in my hand have no power

 

Balled up paper on the floor tells my life story

Constantly rewritten

Red pen marks everywhere

 

Mid-Sentence stops because the plan didn’t even make it that far

Before whiteout was needed

Because once again things have changed

 

My hand hurts from re-writing

And each edit makes me feel like I’m losing another part of myself

Plan C felt doable

But that was so long ago

 

Plan Z is less promising

I’ve learned to start writing in pencil

Leaving the page blank feels like giving up

But I’m tired of erasing

 

 

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My Experience Getting a Disabled Parking Permit

I’ve questioned if I’m “disabled enough” for a disabled parking permit for a long time. On the outside I look like your average eighteen year old girl, so people tend to downplay the severity of my chronic illnesses, and I was afraid to ask for help because I didn’t want to be laughed at or accused of exaggerating. Even though many people who have the same conditions as I do use a disabled parking permit, I was still apprehensive about asking for one.

My mom and I have been discussing this for quite a while, but when I found out I was going to college and living off campus, the conversation became more serious. The college I’m going to is very large and they have a huge parking issue. Even if I went to class two hours early to find parking there’s still no guarantee I’d find a spot, especially since students who live on campus are prioritized when it comes to parking. When I was going to community college I would get to school an hour early because the walk from the parking lot to the building, and then from inside the building to my class would take so much out of me that I would feel awful and needed time to rest to regain some energy.

Honestly, going through that routine everyday was incredibly tiring physically and very daunting every morning. Not even being able to get to class at a community college without at least a 20 minute break to recover was a reality check for how bad things really were. I would use all my energy to go to class, and then would crash and feel even more terrible when I got home, to the extent I wasn’t able to do anything at all for the rest of the day. Then things got even worse and I wasn’t able to do it at all.

I was really nervous to ask my PCP about the parking permit, especially since I just recently switched to a new PCP (my old PCP I had seen for six years and she ran out of ideas so I decided to get a fresh pair of eyes on my situation). However, she is pretty well versed with the whole Dysautonomia thing and everything that goes along with that, and she agreed that it would be beneficial to me especially in the school setting. Outside of school, I plan on only using it on really bad days. If I’m feeling decent then I won’t use it, or if the nearest available parking spot isn’t too far, I also won’t use it.

When we went to the DMV to actually get the permit I was nervous that they would think I was faking it, since I don’t fit the physical description of what most people who receive these permits fit. However, the man was very nice and everything worked out perfectly! I sat down while my mom stood in line, and then went up to the desk to give the man all my paperwork and my ID. I started to feel really terrible right after we got there, so when the man asked if I needed to sit down while he looked over everything, I was very grateful. My mom stood there while he looked over everything and got the placards, and then we were done! The whole process took maybe twenty minutes, which I was really thankful for since I thought it would be like the DPS where you have to wait for over two hours just to renew your license.

This is definitely not something I want to have to need, but I’m glad the process was easy and painless. I hope actually using it in the real world goes smoothly too!

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.

Mayo Clinic Days 3-6

Day three was pretty simple. The only appointment I had was to see the electrophysiologist. Essentially they confirmed what I have believed to be true for the past two years. They think I have dysautonomia and postural orthostatic tachycardia syndrome, and had me do autonomic testing to confirm the diagnosis. I do not yet have those results, but from the numbers I saw during the test, I think it’s going to be confirmed. Since this is an autonomic issue, they’ve referred me to an autonomic neurologist. Unfortunately we couldn’t get into see her this week, so we will be returning to Mayo later next week. They reiterated to me how difficult it is to treat dysautonomia, and how since I’ve failed every medication used to treat POTS already, there isn’t much they can do. It’s incredibly discouraging, but not surprising. My electrophysiologist here in Texas wanted me to have a complete ablation of the sinus node, but given the statistics they quoted me, it definitely isn’t on the table right now, since it has a greater possibility of making me worse or doing nothing at all than helping.

On Thursday, I began my GI transit test, which is basically a gastric emptying scan only they look at the whole GI tract. I had to eat a breakfast of two eggs, a pice of toast, and a glass of milk in ten minutes, which made me really sick. Then for lunch I had to eat a sandwich made with butter, mayonnaise, 5 ounces of turkey lunch meat, with a whole bottle of water and a container of jello all in 30 minutes. I ate as much as I could, but I had to stop when I started violently retching, because throwing up could have altered the scan. Friday morning I had more x-rays to do for the scan, and then I had my autonomic testing done.

Friday afternoon, I had my follow up with the gastroenterologist, and frankly its been hard to digest (no pun intended) the news he gave me. Essentially I have gastroparesis and pelvic floor dysfunction, neither of which was I expecting, let alone two separate GI diagnoses. Gastroparesis is also something that is not easy to fix, and knowing how severe it can get for some people really scares me. At this point mine has progressed to moderate (out of mild, moderate, severe) and they’ve recommended I eat mainly pureed and soft foods. Following a gastroparesis diet is going to be a complete 180 for me, since the main things I eat are fruits, vegetables, and brown rice and I’m no longer supposed to eat any of those. As for the pelvic floor dysfunction, I’m not emotionally ready to try and treat that yet. It involves very invasive physical therapy, that I do not feel is necessary, and I definitely want a second opinion about before I do something so drastic.

The cardiologist thinks I also have fibromyalgia, and the GI suspects endometriosis. When I go back next week I’m seeing a gynecologist for the first time, and also the fibromyalgia clinic, as well as a dietitian to learn more about how I should change my diet. This has all been incredibly overwhelming, but I finally have some answers after six hard years of looking. I’m going to try and go back to school on Monday, but I honestly can’t even imagine going right now. I feel as if I’ve been living in an alternate universe, and being thrown back into daily life feels so odd. Even though I was only gone for one week, I feel like I’ve been gone for a solid month, but as I’m writing this I’m curled up in my own bed with my cat, and some level of normalcy feels restored. I apologize for being MIA, and a lot less active on here for the past two months, I hope you can see a lot has been going on in my life! I will continue to keep y’all updated through my Mayo Clinic experience when I travel back next week.

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!

Would My Twelve Year Old Self be Proud of Me?

As I enter into adulthood, I find myself wondering if my twelve year old self would be proud of me. After some reflection, I have come to the conclusion that no, my twelve year old self is not proud of me, but I’m glad she isn’t.

At twelve, I had no concept of true struggle. I had just began my health journey, and thought everything would be resolved soon; boy was I wrong. I would have been devastated to know I would still be chronically ill nearly six years later. There’s no way I could even fathom everything I was about to go through at that age. I also would have been so disappointed in myself if I knew I was going to drop out of high school. Success in education has always been incredibly important to me, and I would have viewed leaving high school as a failure. Now, I can see that leaving was the best possible decision for me, and a smart choice. On the same topic, I would have been embarrassed that I go to a community college. At that age, I thought the only people who go to community college screwed around in high school, and couldn’t do any better. She would be proud of my grades though, so I guess that’s a win.

Obviously I was incredibly judge mental and had a very narrow view on life. Honestly? I’m incredibly happy that I am not the same person I was when I was twelve.  My twelve year old self didn’t know what was coming, and she sure as hell didn’t know how the world worked. Sometimes the dreams we have a children shouldn’t come true. Other times we learn that we can be successful and/or happy without completing those aspirations exactly as we had planned. One of the hardest parts about being chronically ill is mourning the life you planned for yourself. I’m processed a lot of the things I’ve lost over the years, but processing the things I may lose in the future is difficult.

I no longer view not my completing my childhood goals as failure. It’s taken me a long time, but I’m beginning to feel like I’ve truly just gone down a different path. Now I can look at my life and say, I completed my goal of going to college even if I’m going to community college, and I finished high school even if I got a GED. I actively have to chose to view these things in a positive light, because naturally they don’t feel like positive things to me. However, given everything thats happened to me I’m glad my twelve year old self wouldn’t be proud of me, because if I did everything she wanted me to do, I wouldn’t be proud of me now.

Do you think your twelve year old self would be proud of you? What are some of the childhood goals you set?

No I Don’t Care That You Know Other Queer People

“By the way my coworker’s best friend’s sister is gay.”

“… oh, um that’s cool.”

This is a conversation that takes place constantly. If someone knows I’m gay, they always love to tell me when they meet other queer people; as if we’re unicorns. Don’t get me wrong, there are nothing but good intentions behind it, it’s just a little weird. Would you tell me if you met another woman, or some else who had blue eyes? Probably not.

This is different from the typical, “oh you’re gay, do you know my friend Sam, he’s gay too?” situation. People don’t think you know them, they just want to let you know they know other queer people. My older sister is the main culprit of this in my life. She lives in a major city, so of course she knows/is friends with/ runs into a lot of queer people, and she lets me know. Every. Single. Time. Maybe I’m a huge jerk for not caring, but honestly it’s just not that interesting to me. I consume a lot of queer media, so I constantly see other LGBTQIA+ people. Plus, I’m in college, so I see a decent amount of visibly queer people in my day to day life.

Being able to see visibly queer people is so so important, and I do get excited when I see other people people just living their normal lives. I feel a sense of familiarity and kinship with other people in the LGBTQIA+ community. Someone telling me about how their barista is gay though, isn’t really something I care to know. What is the correct response to “Oh! I was meaning to tell you my waiter the other day is gay.” ? Do you want me to jump up and down and beg you for more details? I usually go with, “that’s cool” or “oh wow” which both come out sounding incredibly unenthusiastic, no matter how much I try and pretend to care.

I never confront anyone about this, because I know they are just trying to be nice. It in no way makes me mad, or even annoyed, I just find it incredibly odd and kinda funny. Does this happen to you? If so, how do you respond? I feel like this definitely isn’t just something I deal with!