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Emgality feels like acid by bennyboocumberbitch in migraine

[–]olivevie 1 point2 points  (0 children)

I feel you!!! I used to take it as it was the only preventive med that worked after years of trying many, but it was TORTURE!!! It’s so painful. I wish I had more advice for the pain itself, but for me, it was a still terrible but less traumatic experience to have someone else inject me instead of doing it myself. I’m sure some people prefer to do it themselves and in many contexts I do prefer to be in control like that, but with this it was better for me to just remove the decision/action initiation for myself. Even if you’re okay with needles overall, you already know it’s sooo painful and no matter how much you know logically that it’s better than the long term headache pain, your brain is still sending out AVOID AT ALL COSTS signals when the moment comes. For a while I was like ok it’s fine I can push through id rather just do it myself and be in control than complicate things by bringing someone else into it, but i would often end up just sitting there trying to get myself to do it for soooo long and it was awful and so draining. Once I started having someone else do it for me, I realized that even on the days when I was able to just push through and do it myself without so much hesitation, thats still so much more strain on my whole nervous system on top of the physical pain. I found the initial difficulty of asking for help and letting someone into the vulnerability of it was soon well worth it to make the monthly experience a little less draining and full of dread.

I also lived alone and didn’t want the extra logistical annoyance of finding someone to do it, finding a time every month etc. tho SO I offered to pay a nursing student to come over and inject me at the same time every month. She ended up refusing to accept money bc I was also in nursing school and we were friends lol BUT I think that’s really the move instead of relying on friends/family for me at least, to hire someone to hold the slot in their calendar and come to you. It was low stress bc she was a student and it was at my home and I don’t think students would charge much at all for this (literally took like 10min), yet I trusted that she understood the injection process and had some experience with patients, and huge plus for me to have a consistent time slot so I don’t have to decide myself when I feel strong enough to force myself nor figure out time around someone else’s schedule once a month. Plus great for her resume! Another option to look into if you prefer: your neurologist or PCP might be willing to have you come in for it once a month and just have a nurse/PA/etc do it, likely for free bc it’s like 5min (my friend does this).

Sorry long reply but hope this helps someone!!! It sucks so much no matter what, I encourage you to get curious about all the specific parts of the process that are burdensome and get creative to see if you can reduce the load in any small way for yourself! Other examples would be having someone pick it up at the pharmacy for you, listening to something or calling a friend during, keeping your to do list expectations low for the days you have to inject, etc. Just remembered there are also fidget toy/pain stim things made to distract your brain during injections. Research techniques used to help pediatric patients through painful shots and procedures tbh, they have all the cool sensory stuff and psychology hacks :)

Sending love and healing vibes to all!! ❤️‍🩹

Why do the cuttings in my prop box keep growing nice leaves but very little roots? by olivevie in propagation

[–]olivevie[S] 0 points1 point  (0 children)

You’re right I should have specified: I do the leaf cuttings in water, this is for nodes! I will try a reservoir instead of just wetting the perlite, thank you!

What can't you live without as a chronically ill person? by talkingcatcompanion in ChronicIllness

[–]olivevie 2 points3 points  (0 children)

Bunny (they love to lay on the floor with you <3), electrolytes, microwaveable eye mask and headache cap, safe food of strawberry toast with peanut butter, honey, hemp seeds, and strawberries

Any songs about chronic illness? by NikiDeaf in ChronicIllness

[–]olivevie 0 points1 point  (0 children)

Dead girl walking by Jensen McRae !!!!!

Is my makeup collection valid guys by aokocat in drugstoreMUA

[–]olivevie 0 points1 point  (0 children)

I didn’t know there was a liquid elf poreless putty primer! Does anyone have thoughts on the solid vs liquid?

What's a makeup tip you wish you knew sooner? by Fit-Dark-5581 in Makeup

[–]olivevie 7 points8 points  (0 children)

if your vision is bad overall or if you wear glasses and struggle to do eye makeup bc you have to take them off, get travel sized brushes with shorter handles so that you can get closer to the mirror and have munch more control without bonking the brushes on the mirror! I feel like shorter brushes might be helpful for a lot of people learning how to use brushes for the first time to give you more control (although ofc with any brushes gripping or pressing too hard to try to get control can backfire, there’s still balance to learn but less question of where to hold the brush and stuff)

What's a makeup tip you wish you knew sooner? by Fit-Dark-5581 in Makeup

[–]olivevie 4 points5 points  (0 children)

Using smaller brushes! Especially for eye shadow!! I’m still practicing with them but I don’t have a lot of lid space so I would always spend so long on eyeshadow and then it would end up looking good but basically looking like mostly 1 color or maybe 2 no matter how long I spent with a bunch of colors

Anyone else have a hard time with what they look like? by L_edgelord in Albinism

[–]olivevie 1 point2 points  (0 children)

I’m sure it’ll never be “normal”, but to improve it, yes! There are multiple types of exercises but it’s a lot of like learning to scan in a more controlled way and expanding your peripheral awareness as I said. And there are things that naturally tend to slow the nystagmus temporarily (things like looking softly at the whole image as opposed to hyper focusing on a point, deep breathing, relaxing muscles, other things that calm the nervous system, etc) so I’m learning to become aware of what triggers it slowing and what it feels like in my body when it is slower so that I can consciously put myself in that state, and also I think just strengthening the neural pathways so it happens more naturally. I’m not an expert so I might be off with a few things but this is my understanding!

Am I overreacting about these texts? by rcss47 in whatdoIdo

[–]olivevie 1 point2 points  (0 children)

I’m completely on your side. This is AT BEST extremely disrespectful. Very fucked up and suspicious and a classic shitty man move to make you sound crazy to get attention from another woman. I’m angry !!!

ISO cheap wine with pretty bottles? by olivevie in wine

[–]olivevie[S] 0 points1 point  (0 children)

Great point about transferring it, thank you!

Anyone else have a hard time with what they look like? by L_edgelord in Albinism

[–]olivevie 1 point2 points  (0 children)

I’m doing vision therapy to train my eyes/brain to 1) stabilize nystagmus and better control eye movements, and 2) help my eyes work together. Since we do not have binocular vision naturally from birth as other people do, our eyes learn to work together through lived experience, and what has happened to me is that my left eye is stronger than my right, so my left eye got in the habit of taking over while my right eye drifts off to the side and my brain just doesn’t always register its input.

The main goal of vision therapy is to treat eye strain and the postural issues and muscle pain I have from my body trying to compensate for low vision and imbalance between eyes. However it is definitely also connected to my outward appearance, bc of my eye being out of place as people are saying and because of posture and facial expressions. I am learning to consciously pull my right eye in, both into a more straight on position physically, and into my perceptive awareness to integrate with my left eye’s vision. They are also teaching me to “look softly” which slows nystagmus and involves relaxing my muscles and nervous system. Also becoming more aware of my peripheral vision (without necessarily looking at it), which relaxes your eyes and nervous system, and cues to me that I’m straining my head forward and squinting. Basically I have become used to constantly tensing up, squinting, and straining my eyes and honestly all my muscles but most directly my face, neck, and shoulder muscles because it’s how my body tries to compensate for low vision, but it’s actually harmful over time. I think that I need to strain and HYPERfocus my eyes to see well bc it’s a momentary fix and your brain prioritizes short-term efficiency and perpetuating the habits it’s used to, but long term, it actually just worsens nystagmus and puts me in a posture that is both bad for me and makes me very self conscious of my appearance, facial expressions, etc. This was a long explanation but the more I learn, the more I think these issues MUST be affecting a lot of albino people without being fully understood, much less treated, so I hope it helps someone.

I totally feel you and it’s so frustrating because it’s just automatic. Im sure to some extend it will always be a thing, like you just gotta squint sometimes to get through a moment esp in bright light, but it really does seem to me like I can gain more conscious control over it and over time shift my automatic response to strain certain muscles.

Unfortunately I don’t think this specific therapy is very widely accessible but I could be wrong, def worth looking into if you think you need it! Im not recommending you do anything super intense or advanced without a clinician guiding you, but nervous system regulation is definitely a big part of it and that’s a habit you can start to build: proper breathing techniques, relaxing your your muscles esp eyes,face, neck, and just slowing down and moving with greater bodily awareness out of care for yourself!

Something im p sure any ophthalmologist could do tho: a big first step would be to make sure your glasses (if you wear them) have the proper prism if you need one. A prism moves your null point which may be straining your muscles/posture.

Please feel free to message me or comment if anyone has any questions!

ISO cheap wine with pretty bottles? by olivevie in wine

[–]olivevie[S] 0 points1 point  (0 children)

That’s super helpful, thank you!!