When the Future is Uncertain

I officially made it through the semester! I’m home, which is really nice.

Of course, one of the first things I did when I got home was try a new medication. I was switching out my Celexa for Cymbalta, a medication which sometimes helps with chronic pain. Due to hearing some negative reviews, I was really worried. That, and I knew from experience that withdrawal from antidepressants is hell.

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Shaking, feeling sick, sadness, and anger? Withdrawals.

Despite knowing that I wasn’t going to feel too great, I took the Cymbalta. If it helps my pain, it’s worth trying, right?

The first day, I felt dizzy, and I felt irritated at every little thing. I knew the moodiness was from Cymbalta, though.

The second day, I still felt dizzy and nauseous, and got out of the shower to find that one side of my face was bright red. I repeatedly texted and called my mom, trying to convince myself that my throat wasn’t going to close up.

“I think I have a rash on my face? I’d know if it was going to mess with my breathing or something, right?”

After being reassured that it was fine, but that I was allergic, and shouldn’t take the medicine again.

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Hard to tell here, but this was me with a rash on my face that night (I wasn’t pleased).

I’m back on Celexa now, which means I can walk without being super dizzy and don’t have to worry about my mood. Antidepressants are a weird thing.

Now comes the question of what next? I don’t really know. As far as medications, I’ve tried everything (as far as I know) other than opioids, and I have some concerns about those. I know opioids are effective for some people, but I also know that there’s no cure for chronic pain. (I try not to dwell on that, because it sucks.) I’m going to keep searching for answers and remedies, medicinal or non-medicinal; massage therapy is next on the list of things to try, which sounds lovely to me.

Since I was woken up at 4:45am by pain, I’m hoping I can sleep in a bit tomorrow. The rest of break will probably fly by, but I’m trying to enjoy it while I can. Another semester down, just one more to go!

I hope everyone has a restful holiday season!

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Breathing Room

Ever since I became chronically ill, I have constantly been moving. I became unwell in high school – I remember getting sick before my IB English exam and then going into the library to meet my teacher and give an oral commentary – and I was just trying to do my best to get out. Then, once I graduated high school (on time, thankfully), it was time to look at college.

In between semesters, I’ve volunteered and interned, and I’ve learned so much from these experience. A blessing that has come from these conditions is that I have found my passion in advocacy. I want to help others when they feel as if no one is listening. I want to say, “Hey. You’re not alone. I’m here.” I want to write to change the way people view chronic conditions.

The past few weeks have been rough. I nearly cried in a professor’s office just because I was stressed, and the other day I felt like I needed to lie on the floor while attempting to read Middle English. I can’t count the number of times I’ve called my mom crying (God bless her, seriously, she’s the best). I’ve felt like I was drowning in school work while my body screamed STOP STOP STOP, TOO MUCH, THIS IS TOO MUCH.  Except, I can’t stop. My brain is not wired that way. I like to get things done, preferably as soon as possible, and I want my work to be the best it can be by the time it’s done. Trying to quiet your mind when your body is rebelling is difficult.

The good news: I’m 95% done with my big projects for the semester. I still have work to do, of course, but it’s mostly downhill from here.

The news-I-don’t-know-how-to-feel-about-just-yet: I’ve decided (with my family) to take time to focus just on my health after college for a few months. That doesn’t mean I won’t be writing or possibly interning/volunteering during this time, but if I don’t have the energy, I won’t. I’m so, so lucky to have the ability to do this, I know. I’m lucky that my family is willing to support me while I try to get my body in the best possible state. This may mean trying new medications, trying acupuncture again, going to a pain clinic, etc. It’s hard for me to think about all of this sometimes when I hear peers talking about their big plans after college (or, even if they don’t know what they’re doing, I know they’re not worrying about their health). Again, though, I recognize this as a really great opportunity to try and do whatever I can for my body.

The scary thing is, I don’t know what that means for me afterwards. I worry (because I love to worry) what it will mean for me if I still can’t hold down a part-time job. If I needed disability benefits, I’m 99% sure the people running that would laugh in my face, at least judging by all the horror stories I’ve heard. I’m not at all saying I’ll need disability benefits – I’m hopeful I’ll find a job that involves editing, writing, advocacy work, etc. with relative ease, even if it’s part-time, which it likely will be at first – but I think every disabled person worries about it at some point.

Basically, I’m afraid of what the future holds. I’m excited, too. I think of things I can write, ways I can reach out to people. I am clinging to family, friends, and God at this time (because He definitely knows what’s up more than I do), and just trying to find peace. Work is important, but it’s not the only thing that matters. It is a very, very small thing compared to receiving and giving love.

Here’s to less stress and more laughter. I’ll be okay. (You’ll be okay, too.)

The Stress of a Pincushion

I’m home for the weekend (yay!) for a doctor’s appointment. I had the appointment yesterday and talked to my doctor about pain. He’s wonderful in that he says he doesn’t like the idea of a 21-year-old walking around in constant pain. Nor do I, friend.

So, we were talking about weaning off some medications, and he brought up trying cortisone shots.

“I’d be willing to do that,” I said. (I’d be willing to do just about anything if he said there was even a chance of it helping the pain.)

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I mean if you say shots will help…

I thought he meant we’d do them later. Oh, no, he meant then. I got four of those: two in my upper back, two in my lower back. It won’t necessarily help my joints, but I’m hoping it’ll help the muscular pain. I also got a flu shot today, so I’m feeling a bit like a pincushion. Super achy and extra fatigued, but hey, par for the course.

I’ve had to start thinking about what to do in the future. Like, after college. It’s daunting enough to think about without dwelling on your pain and whether or not you’ll be able to work. There are way too many ‘what ifs’ for me, someone who desperately tries to control and plan everything, but, I’m working on planning with my family.

Now’s not the time to talk about details concerning the future; that’s a post for another time. For now, I’d like to get through the next few weeks without having a meltdown. Lately, it’s felt like this:

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My profs throwing everything ever at me

I literally started tearing up in a professor’s office a week or so ago. It was super embarrassing, and I booked it to the nearest restroom, freaked a girl out by crying, and had one of my best friends (shout-out to Michelle for being a saint) help me out. I calmed down enough to leave, and I do feel better now. Still stressed, but not nearly as badly stressed I was before. It’s frustrating when your mind moves faster than your body, and you are left at the mercy of what your body will allow you to do. I feel like emailing my professors and just saying ‘I’m sorry, I know maybe I’m quiet and don’t talk enough sometimes, and I know I could do better if my body let me, but, please, I am trying so hard.’ (But then they probably wouldn’t know what to do with me.)

Enough pity-partying, though. I’m so so so grateful to my friends and family for helping to pick me up when I am down. I’m trying to learn to give things to God more, to take a step back and say, ‘Your turn!’ It’s not easy. I guess it’s not supposed to be. We’re all learning, right? I’ll get there eventually.

(P.S.: Any well wishes for one of my other best friend, Christina, who is in the hospital now, would be appreciated!)

Advocacy

Sitting on the table in the doctor’s room, the doctor says you are anxious. Your symptoms aren’t real, and it’s all in your head.

This scenario is a reality for many patients, unfortunately. It’s so frustrating to respond to someone like this, especially if you’re talking with a doctor who is seen as an authority figure. It’s easy to feel small, and sometimes it’s tempting to listen to doctors who say they know best.

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They don’t. Not always, at least. You know your body best, and you’re going to have to speak up sometimes when you live with a chronic illness.

There are other examples that I’ve experienced that have forced me to advocate for myself. I’ve had to argue with a professor about an accommodation–but how long could I stand up, since I was standing right then, couldn’t I stand for a bit instead of sitting, wasn’t it unprofessional to sit, we have to make this look natural–and it was hard. I was annoyed.

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Are you seriously fighting me on this, prof? Really?

I insisted that I needed to sit. I honestly didn’t care that much about how natural or professional I looked, but I didn’t say this. I ended up sitting on top of a chair (which was idiotic) in a dress (fun times). However, I was sitting.

School is about to start. As a senior, I’ve gone through the routine of passing out my list of accommodations, called access plans at my university. I briefly explain to my professors what I need. I don’t legally need to say anything more, but I’m generally fine if they have questions. It’s awkward to feel like your disability is being pointed out, but it’s important to advocate for yourself in the beginning in case any questions come up later.

Advocacy is a skill you learn. It’s hard, and awkward, and even if you feel nervous, it’s essential that you advocate for yourself. Sometimes, no one else will. Fake it until you make it, and remind yourself that you deserve to be listened to; you deserve reasonable accommodations, even if it means fighting for them.

 

School, Writing, & Not Panicking

School starts in less than a month. I’m excited and anxious; I keep dreaming that I miss deadlines for my Creative Writing Nonfiction class, which is stressful (and in my dreams, Jay, my professor, is always like ‘I clearly gave you a printed deadline and it says your things are due today??’ And then I wake up worried that I have something to turn in. Probably because I mentioned being sick on deadline days in my last post, and the fact that I’m constantly worried something will happen and my illness(es) will affect me in school.

I’m also anxious because this is my last year. I’m going to be a senior somehow?! I swear I just started school, that it was a little while ago that I was sobbing in Ashby 101, begging to go home. Luckily, I stayed. 🙂  I know, all college students are generally anxious during their last year. The future is terrifying, and I sometimes struggle to balance optimism and realism, the latter of which can turn into skepticism easily.

wHAT AM I GOING TO DO WITH MY LIFE?!

I’m fortunate to have a really supportive family who I know will help me if I need it, and I’m trying really hard to trust God to use me however He wants. I’m just really desperate to be independent and “good enough.” This is something a lot of disabled people worry about. Everyone worries about it, I think, but being disabled adds another element. (Cue annoyed rant about disabled people being seen as useless if we can’t work/be productive according to “normal” standards, and the fact that, even if you receive SSDI, that’s below the poverty line. Capitalism and ableism, man. An article for another time.)

I’m submitting articles to different online magazines (rejection’s going to happen, of course, and I’m fine with that) and trying to keep writing. Writing is something I can do to reach out to others. I’ve always believed in the power of words. If you couldn’t tell, writing is really important to me. I believe I’ve had one, if not two, professors of mine say that writing is like their religion. While I wouldn’t necessarily word things that way for me, personally, I understand the sentiment.

As the future approaches, I’m trying to just look up and keep writing. I’ve learned from my classes and professors that the best writers are the ones who keep going. There are going to be terrible drafts, lots of rejection, and not always the best pay. No matter what else you’re doing, you keep writing. My grandma, a former English teacher, continues to write; she’s experienced so much what I have in regards to chronic pain and fatigue, but for much longer. At the beach, her poems are framed around the house. I admire her endlessly.

In summary:I take myself too seriously. I’m super lucky to have the people I do in my life, I’m privileged to be at such an amazing university, and this next year will be an adventure. Things will work out. And I will keep writing.

Hiatus Over

So, it’s been a long time.

Like, a year.

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Whoops. I’ve taken to writing on tumblr, but it’s not quite the same.

The last year has been a bit of a whirlwind: chronic pain, finishing my junior year of college, going to the ER for the first time, two times in total (not a lot compared to many POTSies I know), taking some amazing classes at school, learning more about myself as a person, writer, and Christian, and interning at Dysautonomia International (!).

At the beginning of spring semester, I genuinely wanted to take medical leave. I was going through withdrawals from Lyrica, taking a later class, and desperate for relief. I dropped a class, got of Lyrica extremely slowly, and finished. I only missed a class all semester, and that was when my heart was skipping beats and I was in the ER, so that doesn’t really count. (Sidenote: I always have an issue on the day that I’m supposed to be workshopped in my creative writing classes. Creative Writing Nonfiction workshop day, thought I was having a heart attack but went to class anyway. Creative Writing Fiction workshop day, went to the ER.) I managed to make the best grades of my entire college career last semester despite the health madness?? Don’t ask me how.

Dragging myself through school

So, things have been hard. But, exciting things have happened, too. I’ve grown more confident in myself as an advocate for my health. I’ve grown closer with my friends. I’ve just finished the classroom portion of my internship, which is thrilling. I was overwhelmed at the papers and thought of 160 hours of interning in two and a half months, but I did it! Dysautonomia International’s annual conference has just finished, and it was so great. Exhausting, but wonderful. I presented and also helped my mom present. I feel so honored to be a part of such an important organization.

More posts to come! I’m going to make it a habit of posting once a week. I’ve missed writing here.

With love,

Emily