searching for answers

Lover of earth & sun ☀️🌍••• Healing from severe LC, dysautonomia, pots, mcas since March 2020 #firstwave Fighting for this one precious life #bedbound.

[Emma 🦋✝️ @Emma40025133]

God made me perfect, humans destroyed me

#LongCovid

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@MetaGunny Yeah benadryl is what my neurologist suggested, they offered steroids too, but I do not do well with steroids. Ive also read to avoid oxalates and vitC

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I have to get multiple MRIs w/ contrast in preparation of meeting with the csf leak specialist. My chronically ill body is not gonna like that is it?

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@GutOptimized Yet a lot of ppl drink daily, eat SAD, drown themselves in fragrances and vape, but they are seemingly fine.

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@GutOptimized A lot of us were very health conscious and athletic before a virus wiped us out. No decision could have prevented this. I never even drank or wore cosmetics etc bc of concern of toxicity.

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@KeyDecision1 @AnnaleishaMae @NeurologistMom Is this an upright MRI?

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@NeurologistMom Im supposed to get gadolinium contrast in the coming weeks. Im very severe. If a doctor orders the scans with contrast can the patient request to do it W/O contrast at the appt?

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Gadolinium toxicity scares the shit out of me.

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@NukeFF25 Now they are saying October. And Chris said that the "shift" could be so subtle that no one may notice. But it marks a new age. Just like religion, they will always be able to explain it away.

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@gymrat_bookworm Is it the migraine meds that are helping with the encephalitis? God even the "best" LC doctor in my area cant seem to get over trying adhd meds on us.

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@griddlocked Not twitter flagging this as sensitive content 😑

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@laramecfs One of my doctors keeps suggesting this, and acts like $300-500 is affordable

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@danaparish Why cant they just take us out swiftly? Instead they make us suffer with these terrible lab-created diseases for decades. And then offer maid & make it seem like it was our choice to die. We want to live damn it!

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@ferrisbuhler81 @joerogan @ways2wellX Ive been trying to get this treatment for rare autoimmune autoantibodies for nearly 6 years. Insurance wont cover it. Cant afford out of pocket.

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@RoyalistW I had an amazing life. Job I loved, fit & healthy, great friendships/relationships, extensive international travel & time in nature. I cannot do any of that now. Cant even situp without fainting.

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@RoyalistW You ever been bedbound for 6+ years and in agony every moment due to illness/brain damage that there is no treatment for? Spent life savings on fringe treatments? Require a caretaker for basic needs? I never had suicidal ideation before illness struck me.

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@Catinmyfamily Exactly. I tried this and natto back in 2020. Why are the still pushing this old tired shit. 😭 Giving new longhaulers false hope. I wonder how much funding these sham studies are getting.

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@Earth___Crisis Yes, there is a lot of hostility, it's so sad to see. Has this disease not broken them enough? Those of us who are more severe need advocates. No one gives a shit.

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@Earth___Crisis I empathize with any loss of function, but find myself envious of those who have working brains, can watch tv, hold a conversation, read, drive, go to a store, cook, shower without help.