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Surreal

I feel like I walked into a different world in the space of a couple weeks that felt like an eternity.

I could read the signs as well as anyone.

My hospital has air locks.

And a “Radiology Patient Holding Area”.

They won’t do standard x-rays on a patient with osteoporosis who has fallen because their x ray machines are contaminated.

Necessary but spooky as all hell.

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Thank you everyone.

I do not even know what to say, I am gobsmacked. Thank you. We still need help but thank y’all so much for the help that has already happened. I have cried with joy and gratitude, just sobbed uncontrollably, I love all of you, including the ones that I don’t remember. Which is more than I want to admit. It ain’t personal, it’s my brain. Not kidding about being a slow learner these days.. I might have been something else once, but I am slow now, and that’s probably the epilepsy. But thank you, thank y’all so very very much, the depth of gratitude and love can’t be exaggerated. Including John. I am sorry I had to make that post.

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We need real money badly.

I am going to run out of crucial meds. This is me shamelessly begging for money. You can paypal it to webmuskie@gmail.com. It needs to be real money, not a gift card, because we have to use it at the pharmacy. If the pharmacy is open. And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. Also we really need respite. Laura says a few more days of this could kill her, having to take care of me. I keep trying to take a load off her but somehow making more work for her. This isn’t sustainable and we are trying to survive. So I have no shame in begging, something is massively messed up with my benefits I have no access to them. Please help please someone help ideally lots of people help. Also Laura says her wishlist works now. We are both under unbelievable stress. She has an autoimmune disease that can flare and kill under stress. This is no joke. This is not trivial. We need a metric crapton of real money. Or we will both die here. Everyone dies but I want to die of a disease or old age the way most people do, I do not want to die of preventable stupidity. Please help. Please help us. We are running out of everything. Please, please, please help.

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The view out my window.

If you look close you can see the smokestack from my apartment building. And lots of trees.

This is why it is so easy to believe there’s no threat. If my roomie wasn’t certified in emergency management I don’t know what I’d do. Also she wants you to know her wishlist works now. We have $5 toour name. any and all help appreciated.

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Just got out of hospital

So i just got out of the hospital.  I had the flu.  Luckily only the flu.  But my body is hanging by a thread. A thread. Like they changed around my stomas and everything there is leaking.  I keep falling to the floor from the congenital myasthenia caused by my AGRN mutation.  i am still slighty delirious.  Usually I get passive delirium.  This is active delirium — the kind people pick up faster.  I stood on my bed.  I ripped my hair out.  I was convinced they were going to kill me.  And that they were easing me into death.

But I am learning.  Especilally learning the hard lessons about surrendering to not knowing what is going on.  That was a hard one for me.   At one poiint the nurse said I needed ADD meds.  And apparently the fastest way to get a “sitter” (someone who stays in your room at all times) is to “bedstand”.

I am freezing cold all the time from adrenial insufficiency. 

But I did a lot of facing my mortality in hospital.

Despite or because of thinking I was already dead and possibly in hell.  I don’t believe in heaven or hell.  But old training dies hard I guess.

Anyway I feel really good about all this.  And I have made a promise to my friends to go back to typing for good.  Speech makes my brain hurt.  And even my doctors worry when I speak. Usually a sign of delirium.  And as the delirium wears off, I do better with typing.  Speech is evil.  For me.

I would urge my friends who speak under stress to type anyway.  Emergency speech can still be frigging evil.

Oh and I’m trying to cuss less, despite the title of this blog. 

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We are all in this together.

If the Coronavirus does not teach people we are all in this together, we have problems. We are all in this together. We take care of our own. We know that our weakest people are valuable. We should.. I do not like the way this is going. But we ought to be aware of these things at all times and it should not take a massive catastrophe to do it.

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We need respite.

Laura has been my ONLY caregiver other than a few specialized nursing services, since I got out of the hospital last summer.

This is not sustainable. Frankly I am afraid it will kill her.

We have the means to pay you somewhat through Aris.

But we really, really, really need help.

Please if there is anyone in the Burlington area, email us at mel.laura@gmx.com

This is urgent, this is going on right now, we are in over our heads, please anyone who can help even a little, contact us, the worst we can do is not need it but we probably need it.