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Big thing for me and my life: had my first relationship!!! And first breakup 🥲. Let’s hope the next one goes a little bit better, yeah?

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I need to ask a favor this autism awareness month. I’m having trouble getting the money to pay two bills. I need to raise just $205. I’m asking for mutual aid. On top of being chronically ill and disabled I am an autistic ADHDer and am not able to work much. I’ve been flaring in many aspects as well as having unexpected costs come up this month. If you feel so inclined to show monetary support to an autistic person this April and choose for that to be me, I would be eternally grateful. My cashapp and Venmo are both junebuglivia.

Either way. Happy Autism Awareness and Acceptance month.

PS: Autism is not a disease.

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Updates!!

- insurance approved my wheelchair!! Parts are being ordered and then assembly can begin and I’ll get a call to set up a delivery time

- I’ve started physical therapy! Hopefully this can be the start to some improvement to my daily life so things aren’t quite as hard

- I have someone who helps me keep my apartment clean and take me to errands as I need to go

- my anxiety got really, really bad so we’re trying a new medication for it

- not medically relevant but!! I got a girlfriend. She’s so sweet and more than I could’ve dreamed of (:

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I’m sorry. I’m not strong. I’m definitely not strong enough for all of this. I never was, I was just afraid.

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Some small updates

Let’s start with the good news! Progress is being made on my custom wheelchair. One more document needs to be signed off on and it’s being sent to insurance for approval. I also have appointments set up to start seeing a physical therapist and an allergist. I also am getting a nerve conduction study done next week. Hopefully this will be the start of some real progress in managing my conditions better.

The less good news: My insurance is Medicaid and it is actively at risk of being cut by the US Government. As I’m writing this out, it’s being voted on. If it doesn’t pass today, I’m sure they’ll keep pressing for it in the future. Please keep calling your representatives if you’re in the US and if you’re not… Please wish us well.

The bad news: As anyone who follows me knows, I’m a chronically ill and disabled queer person. If programs like Medicaid are cut, I will be left without essential healthcare which will undoubtedly leave me in a state of having to make some very hard but important decisions. That along with my already minimal hours at a not high paying job being cut leads me to having to do something I really do not like having to do: Asking for help. It’s become clear to me I need to build some kind of financial safety net. As it currently stands I will be able to pay exactly my bills and nothing else. While I do stuff in my real life to try and combat this, I ask for help in the form of mutual aid. Only if you are willing and able to do so. My p@ypal is @/caitlindavis5. Thank you for reading this and for following my journey.

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I’ve been stuck in a pain and fatigue flare this past week or so. As a result, I haven’t been able to really do anything. I’ve just been alone with my thoughts and with the flare combined with everything happening in the news in the US… Well. I’ll just say good major depressive disorder reminded me she’s still here. Nothing happened, I’m safe. Just definitely still mentally ill.

And that’s really what I wanted to touch on real quick. The very real mind spiral chronic illness and disability can cause when things get hard. When you’re isolated for too long. When too long because just minutes instead of hours or days. I had to make a grab for a life line. For someone to notice me and want to check in. I got really lucky- I started yapping away on Threads and found an internet friend there. We started talking and that gave me some reprieve from feeling so horribly alone. Gave me someone who really understands what I’m dealing with. I also joined a discord server and have been making an effort to speak in there despite how absolutely uncomfortable it was for me at first (I’ve never really been good at speaking up in groups).

My point is, now, more than ever people *need* community. We need people to check in on and who will check in on us back. I know we’ve all probably heard this a ton but it’s so true. Build up the best community you can. Even if you don’t think anyone will want to be part of yours, just try. Someone will be glad to know you.

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Guys the chronic pain gods have struck me down once again

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This last month has been remarkable in regard to getting disability help outside of medicine. I got a disability lawyer, a loaner wheelchair, got measured for and filled out the order form for a rigid manual chair, and I have an appointment set up with Health Services to see about getting day to day help with things like cleaning, errands, etc. It has been really busy but we’re making progress. I just wish I had someone to share these moments with in person more. At least I’ve got my cats. They’re the best help really.

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Yesterday I got a call setting up an appointment to get measured for a custom wheelchair.

Today Americans woke up to the news of federal aid being frozen. As a chronically ill and disabled person who can only (and barely) work a very limited amount of hours I rely on federal aid. SNAP, Medicaid, HUD. I have no other assistance. I’m terrified and so, so angry that this man has been voted in and given the power to do this. I have no idea what happens next. I have no idea if I should even bother continuing to pursue getting SSDI. I have no idea if I’ll even have a place to live by the middle of next month.

I miss yesterday when I was excitedly looking up potential models of chairs I might be getting.

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Absolutely wild update- I have my first wheelchair! No, not through insurance already. I contacted an agency that works with my local community for a chair I could use while I wait for all of that to get worked out- or to keep if it doesn’t. I’m so lucky, they had one built for my general height and weight the same day I contacted them. I made the initial call at 9:00 am and had the chair by 1:00 pm. My mind was legitimately blown. I’m also blown away by how much better I can move around in this chair. I plan to make it more fitted to me in a number of small ways but so far all I’ve done is remove the foot rests- they stuck out way too far for my liking. Now I can make tighter turns which is so nice and I can get up closer to things. If anyone has any suggestions for making using this chair- especially out and about- easier, feel free to let me know! If not can we all just marvel at how well this is going so far?

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Hi friends, amazing news, I GOT A PRESCRIPTION FOR A WHEELCHAIR. Now we move on to fulfilling it and dealing with… Insurance. *boss music starts playing*

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me when the chronic pain is chronic and painful:

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I have a disability lawyer! They’re taking my case!

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Does anyone else deal with panic attacks after a particularly bad episode with your chronic illness/disability symptoms? Mine keep interrupting me at work and every single time I have this horrible sense of dread and panic after and I’m having a hard time coping.

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“Oh, you live alone while dealing with chronic illness and disability, how do you get everything done?”

I don’t. I barely get anything done. I can’t take care of myself the way I need to. I need help but I have none. I don’t have access to help and I can’t get my doctors to understand how dire my situation is.

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Yesterday I thought I was having a final appointment with one of my specialists but nope, more tests and more appointments 🙃

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That feeling when you have to put “rest” on your to do list so you can make sure you can do something you *want* to do and not be totally crashed.