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December 2019

Lyme disease can F off. There I said it.

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functioningtired

every time i go to a doctor’s appointment and th

every time i go to a doctor’s appointment and they harp about how i really need to have more support systems to help me do things it drives me up a wall. oh yeah, sure, let me just pull some better family and a billion friends out of my ass???
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as if i have things this way by choice? as if i don’t have so many days where it fucking eats me alive knowing i will never have someone to fully take care of me and take that burden off of my shoulders? as if i’ve ever had anyone to do that, in my entire life? ⁣⁣
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And I know their comments are well meaning. I know they are concerned, because this is so, so hard even when you have a massive support system. This illness eats you alive. ⁣⁣
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but all that runs through my head is - ⁣⁣
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1. Why u gotta rub it in ⁣⁣🥲
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2. what if i just DONT?? that means i don’t deserve to ever get better? i’m here and doing it and until i’m unable to do so myself it shouldn’t be an issue⁣⁣
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3. It’s so unrealistic to ask everyone else to drop their ENTIRE lives for things i am still able to do by myself. no one needs to take 3 days off of work literally just to accompany me to an appointment in order to spectate. ⁣⁣
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i’m so thankful for what i already have😌💙 i have people in my life who are so kind and caring and have done more than they needed to in order to help me and that’s more than a majority of people in this situation even get. And we ALL deserve to get better with or without help. I see SO many of you on here fighting completely on your own and you are the strongest people I know. ⁣
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*this photo is in fact from last year i forgot to ever post it and then thought it would be weird with the christmas tree in the back so enjoy. moose is my best support system

I actually really like to travel. ⁣⁣⁣ ⁣⁣

I actually really like to travel. ⁣⁣⁣
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I love a beautiful view 🏞 I've never been able to say the same about the hike to get there lol. But before I got really sick I usually still had the energy to see and do enough to make a trip feel worth it. When people asked, "what do you like to do?" one of the things I would have answered was "travel."⁣⁣⁣
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Now when I meet people who say they love to travel and have photos of beautiful places, it makes me feel a sense of being.... lesser. I don't know. I feel like those people will never give me a chance. Like they'll see me as a bowling ball they have to carry chained to their foot on every adventure. ⁣⁣⁣
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I'm scared and insecure that the first thing these people see when they look at me is all of the things I can't do anymore. I can't hike long distances. I can't always just up and go with no planning. Long days are out of the question. ⁣⁣⁣
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I guess I didn't realize that I was also making those judgments towards myself😕⁣⁣
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@alexischangestheworld posted on her story awhile back and it has stuck with me. she travels all over with her husband and i love to follow their trips. she posted about how on trips when she is unable to do certain things because her lyme symptoms are getting in the way, sean will go by himself to get videos or photos for her to see so she isn't disappointed about not being able to see it. ⁣⁣⁣
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i think about this post a lot. i think sometimes we shame ourselves for things we can't control, like having an illness you never asked for. it can be really hard to remember that the right people will want to make you feel included, will think of ways to make it accessible for you, will hike to a waterfall in the rain because you wanted to see it but are in too much pain. idk. just on my mind today💛⁣⁣
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📸📸 image description: girl stands on suspension bridge facing the camera with bright blue sky, treetops, and snow behind her. She has both hands holding each side of the bridge and is wearing sneakers, leggings, a light blue denim jacket, a knee length long black winter jacket overtop, and a light grey baseball hat with a temple university “T” on the front

TW: food, diets⁣ ⁣ This morning I drank a soda

TW: food, diets⁣
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This morning I drank a soda. And last night, there was cheese in my dinner. Some days the only thing I can manage to get down is a bagel full of gluten. And truthfully, I don't give a fuck. ⁣⁣⁣⁣⁣
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There are many, many, many things I love about this community. I don't know what I would do or where I would be without it. But the amount of toxicity around food and diet is something that really disappoints me. ⁣⁣⁣⁣⁣
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There seems to be a general consensus here: 𝙧𝙚𝙨𝙥𝙚𝙘𝙩 𝙩𝙝𝙖𝙩 𝙬𝙚 𝙚𝙖𝙘𝙝 𝙖𝙧𝙚 𝙙𝙞𝙛𝙛𝙚𝙧𝙚𝙣𝙩 𝙖𝙣𝙙 𝙘𝙖𝙣 𝙢𝙖𝙠𝙚 𝙤𝙪𝙧 𝙤𝙬𝙣 𝙘𝙝𝙤𝙞𝙘𝙚𝙨. Even when our diseases are the same - our symptoms, treatments, and how we deal is not the same. ⁣⁣⁣⁣⁣
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But when it comes to what we eat, the message seems different. "Those foods will make you sicker" is a judgement I hear or see posted all the time. ⁣⁣⁣⁣⁣
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There are a lot of foods that most people agree can cause inflammation - gluten, dairy, sugar. ⁣⁣⁣⁣⁣
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And then there are a lot that change depending on each person you talk to. Some will claim fruit is still terrible 🍏 Tomatoes? 🍅 Nope. But wait, that person said tomatoes are good. That person says no peppers 🫑 Or maybe it was only in moderation. I can't remember.⁣⁣⁣⁣⁣
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Maybe, we should just focus on ourselves. not everyone's circumstances are the same. Not everyone has the finances or accessibility for these kinds of diets. Some might have others preparing their meals or issues around food. ⁣⁣⁣
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The constant obsessing over every single thing I put into my body and the fear that it was making me so much sicker was wildly unhealthy for me. It frequently led me to eat nothing at all because my anxiety was so bad or because I felt too sick to choke down foods I just didn't have an appetite for. ⁣⁣
⁣⁣⁣⁣⁣I was putting more stress on my mind and body by eating nothing and withering away to 95 pounds. And you know what? Stress causes inflammation too. One size fits all does not work, and that's fine. We cannot be perfect at everything. What I choose to eat is MY issue, and no one elses✋🏼

I am so, so, fucking tired. ⁣ ⁣ ⁣ ⁣ if som

I am so, so, fucking tired. ⁣
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if someone else could please write the image description that would be much appreciated.

I could while away the hours⁣⁣ conferrin' with

I could while away the hours⁣⁣
conferrin' with the flowers ⁣⁣
Consultin' with the rain. ⁣⁣
And my head I'd be scratchin' ⁣⁣
while my thoughts were busy hatchin' ⁣⁣
…..If I only had a brain 😩🌈👠⁣⁣
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Happy halloween!! 👻🎃☠️ hope you all had a fun and spooky day 🖤⁣⁣
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Image description: caucasian girl with blonde hair pulled back into two pigtails with small pieces hanging out at the front sits on a tall stool in front of a white wall with a door directly behind her. She is dressed in jeans, a waffled light grey top, and a blue flannel. She has makeup on that is meant to look like a scarecrow including rosy cheeks and stitches along nose, mouth and forehead. She is smiling with her tongue sticking out of the left side of her mouth and her head tilted to the right.

The Tick-Borne Disease Working Group was establish

The Tick-Borne Disease Working Group was established by Congress in 2016 as part of the 21st Century Cures Act to provide subject matter expertise and to review federal efforts related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities. ⁣⁣⁣⁣
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The focus of this effort is the development of a report to the Secretary of HHS and Congress on the findings and recommendations for the federal response to tick-borne disease prevention, treatment and research, as well as how to address gaps in these areas.⁣⁣⁣⁣
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When I saw @projectlyme and @tickbootcamp post that this committee accepts public comments, I knew I wanted to write something. I wanted them to know how our governments failure to respond to this crisis has ruined my life and so many others. I wanted to tell them how much we suffer. ⁣⁣⁣⁣
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So I did. It took me over a month to write because brain fog is an absolute bitch, but I got my story out and I hope that they’re forced to read it. ⁣And then I posted it on my blog for the rest of you and whoever else to read. ⁣⁣⁣
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‼️ I have a link in my bio where you can click to read my post and also to see how to submit your own comment ‼️ Yours doesn’t have to be as long as mine (i’m pretty long winded as we know), but you can include things like:⁣⁣⁣⁣
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* Diagnosis⁣⁣⁣
* Treatment⁣⁣⁣
* Symptoms⁣⁣⁣
* Financial burden⁣⁣⁣
* Impact on day to day⁣⁣⁣
* What do YOU as a patient think is most important? (I.e. access to different types of treatments, etc.)⁣⁣⁣
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Make it so they can’t cover their eyes and pretend this isn’t real anymore. ⁣⁣⁣
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💚💚 If you want me to post your comment/letter on my blog (anonymous or otherwise) - I’d be happy to do so. Please comment or shoot me a message💚💚

I realized that I’ve lived with my illness being

I realized that I’ve lived with my illness being invisible for so long that now that it’s out on display I feel like I have to keep it hidden or people will think I’m looking for attention. ⁣
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I’ve been scared to wear tank tops or anything that shows my chest in public because people will think I want sympathy or that I’m making things up because I can still walk around and sometimes I look fine. I’ve been gaslit by every doctor for so fucking long that even when it is blatantly fucking obvious how sick I am, I still feel like I can’t admit it or that I’ll be questioned or judged. ⁣
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I don’t know. I don’t want to have to change the way I dress because it makes me feel ashamed of being sick, and I’m not. I guess I’m just struggling with adapting to going from invisible to partly visible and not knowing where that makes me fit anymore. ⁣
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Image description: girl sitting cross legged on bed wearing lavender crop top and light grey high waisted sweat shorts, with a PICC line underneath a bandage on the right side of her chest, closed smiling with hair in a bun and a shelf of plants behind her head

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