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December 2019

Lyme disease can F off. There I said it.

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functioningtired

This has been the loneliest year of my life, and t

This has been the loneliest year of my life, and that’s okay. I’ve spent my whole life trying to avoid being alone. I didn’t grow up with a stable support system and so I tried to fill that hole through other places in my life. I’ve cycled through friend groups and relationships in a desperate attempt to never be left alone with my own thoughts for too long. I made sure to never have too much down time. If I filled my time with projects and people and events, I rarely had to stop and think about all the feelings I was running from. Truthfully, I was terrified of what that looked like. I was scared of being forced to face my pain alone. I didn’t think that I could handle it. ⁣⁣⁣
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Humans are wired for connection. We’re not meant to be alone. I found myself forced into a position last year where I had no choice: I was by myself in a new city, mid global pandemic, living in toxic mold and too sick to stand up many days. Losing my fucking mind from the mold getting to my brain and undiagnosed PTSD. ⁣
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There were a lot of moments where I really thought I couldn’t do it, moments that I thought would break me. Laying curled on the floor convinced the loneliness would eat me alive. Wanting nothing else in the world but human connection, someone to hug me and remind me for even one moment that I would not be alone forever. Wanting it so badly it was a physical pain in my chest that made it hurt to breathe, hurt to be alive. ⁣⁣⁣
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I was finally forced to face my biggest fear, and I survived. I connected with parts of myself that I hid from for so long. I stopped avoiding my feelings. I let myself be miserable and lonely and I was okay. I found meaning in small moments and slowed down for the first time in my life. I learned that stillness can bring joy, and peace, and healing. Sometimes, we are much stronger than we think🤍⁣⁣
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Image description: girl in jeans, multicolored striped top, and black jacket with arms thrown out to side and closed mouth smile standing in yard with trees and grass in background.⁣⁣
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photo dump of various random photos and videos follow.

“The difficult thing is that vulnerability is th

“The difficult thing is that vulnerability is the first thing I look for in you and the last thing I’m willing to show you. In you, it’s courage and daring. In me, it’s weakness.⁣
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Vulnerability is about showing up and being seen. It’s tough to do that when we’re terrified about what people might see or think.”⁣ ~ Brené Brown
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I’m extremely vulnerable on here. There’s only a handful of people that I know from my personal life who follow me on here. It’s easier to be so open to strangers, but it’s still hard. I still second guess every post, sit and obsess over the wording. I wonder if people are judging me, if this is actually helping anyone or if I’m just whining on the internet. To me, my vulnerability is scary. To many of you, my vulnerability is brave. (your messages keep me going, more than i can ever put into words💜)⁣
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Finding the confidence in yourself is hard but being vulnerable is a huge strength. I have people open up to me ALL the time and constantly tell me “wow i never talk to anyone about that.” My ability and willingness to be vulnerable and open makes other people more comfortable being vulnerable. That is a strength. And always remember that absolutely *everyone* has something.⁣
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Image description: blonde girl wearing blue jeans and yellow crop top leaning against stone bridge and looking back over her shoulder smiling at camera with green bushes and trees in background⁣

This is for any person on a dating app who has bee

This is for any person on a dating app who has been rude about my medical conditions 🖕🏼😜⁣
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I’m joining @Healp.co and @Unhidden_Clothting’s #HotDisabledSummer campaign. I’m meeting my body where it’s at and enjoying the sunshine ☺️☀️

I don’t feel like I’ve ever had a huge problem

I don’t feel like I’ve ever had a huge problem with fomo (fear of missing out). If I don’t want to do something or go somewhere, I usually say no and don’t have a second thought about it. I’ve never been the person sitting at home wishing I had actually said yes or the person who forces myself to go to things because I’m anxious about what I’ll miss. ⁣
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The feeling I’ve had lately isn’t exactly fomo, but I don’t know how else to explain it. It feels like fear of missing out on my entire life. It’s the suffocating feeling of not having anything to look forward to. No light at the end of the tunnel. ⁣
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I can’t make plans that are further away than next week because my illness dictates my life and my plans. I can’t plan vacations, events, outings, or even an appointment to get a massage (can we talk about 24 hour cancellation policies?)⁣
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I can’t drive anymore. I’m stuck staring at the same walls all day every day and having no idea how long it will last. Watching opportunities and moments pass me by and having nothing to look forward to day in and day out. I want to know when I’ll be able to live again. I want to know when I’ll stop feeling so fucking trapped by my own life. ⁣
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image description: iv line in arm with bandage over it, “bloom” tattoo with flower peeking out from underneath bandage, sea band on wrist, blue shirt and grey shorts

It takes me 6 days to come up with a caption. I wa

It takes me 6 days to come up with a caption. I want my brain back so bad. Still fighting, I’m tired. ⁣
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Love u all more than i can put into words. Couldn’t be doing this without all of u supporting me and the sweet messages, even when i’m not able to respond💛 ⁣
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Image description: girl laying on large grey beanbag with french bulldog laying next to her, taking a mirror selfie in a large floor mirror

“Who are you? Try answering without your name, j

“Who are you? Try answering without your name, job, things you’ve done.”⁣
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When I was in school we spent so much time on the concept of an “elevator pitch.” 30 seconds to a minute summary about why you chose your school/major, work history, marketable skills, future goals, etc. Summarize yourself by your productivity. ⁣
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In support groups and doctors offices, I have a new version of my “elevator pitch.” My age, how long I’ve been sick, when I was diagnosed, what other conditions I have, what symptoms are the worst today. Summarize yourself by your sickness. ⁣
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Who are you? Somewhere between the work horse and the sick girl. Most days I feel lost, and for awhile I felt so much resentment over that. I hated feeling so purposeless, so blank. I was frustrated because I kept looking outwards to get the answers about who I am inside. I was measuring my worth in external factors and when those external factors were taken away, it felt like the person I thought I was had been erased and I wasn’t sure who was left. ⁣
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Being forced to sit in this stillness was really scary at first, but now it brings me peace and truthfully, excitement to be able to figure out who I really am and who I really want to be beyond my accomplishments. Instead of feeling resentment, I’m finally able to feel grateful that I have the opportunity to stop and figure out the answer to that question, because I don’t think it’s a question I ever would have stopped to ask myself before this happened. ⁣
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Image description: girl wearing ripped jeans, “recycled” t shirt, striped converse looks off to the side and leans against a wall with a tile mural on it that depicts flowers, one leg propped against wall

I wasn’t ready to talk about it earlier this wee

I wasn’t ready to talk about it earlier this week, but now I am.⁣
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I went in for my surgery on Monday morning. I have a decent amount of medical trauma. I felt comfortable going into this because my LLMD recommended my surgeon and so my surgeon sees a lot of lyme patients. When my pre-op nurse called me last week I felt even more comfortable as she told me about her daughter who had lyme and how getting this surgery made such a difference for her. ⁣
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Due to covid restrictions, I had to go in by myself. I was brought back, hooked up to an IV, and waited to meet with the anesthesiologist.⁣
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Let me just say that this is my least favorite part of any appointment. My med list is now long enough to have to be kept on an excel sheet and printed out. A hassle, yes, but I promise you it is more miserable to be the person swallowing 40+ pills a day every day than the person who only has to take 10 minutes to review them. The anesthesiologist felt it necessary to interject his opinions about my treatment - “you’re taking so many of these you don’t even know what they’re doing at this point” and scoffing when I answered his questions about the severity of my symptoms.⁣
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I’ve been gaslit by so many doctors at this point. I spent 15+ years being gaslighted and told that everything I was feeling was normal and I was a hassle to even question it. I am used to it, even if I shouldn’t have to be. I think I was so caught off guard at this moment because the entire team I had worked with so far had been the full opposite of that. Everyone had done so much to make me feel comfortable and taken care of and in a few moments it felt like that was all for nothing. ⁣
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This was enough to set my anxiety off full force and I started crying. When my surgeon made his final round and saw me, I explained what had happened. He told me how sorry he was, and urged me to just ignore the comments and people who speak out of ignorance. At my follow up appointment the next day, his PA apologized again and told me how truly awful he felt that someone made those comments to me. ⁣
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Continued in comments ⬇️⬇️

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