Well, it’s a super full moon …
Might as well share the news..
All of my hard work to get to speciality hospitals, mostly resulted in a dead end at this point. Due to a multitude of circumstances. Our medical system isn’t set up for cases like mine, my body has had further permanent crashing from these excursions and I’m in quite horrific shape these days. Yes, I’m trying things. Upping things. Downing things. But it’s just a giant storm. It seems likely I have that cci spiky syndrome where csf fluid leaks, tries to be released anywhere and messes with my optic and balance in ways that are too hellish to describe. Press repeat on these episodes. They also cause many other issues with my vitals, swallowing etc.
I made it to the university of Chicago neurologist. It was a VERY difficult trip on my body and the volunteers were more careless than usual. I was almost dropped. Again. And I’m just so over this at this point. It was all because of a very preventable situation. This is a theme I’m noticing with this volunteer. I’m so very grateful but she’s made some really bad moves that have absolutely contributed to my crashing further. And it was honestly barely worth what’s happened to my body since.
I do have o2.
That is useful.
Doesn’t do much for these massive brain inflammation flares though.
In good news, he was actually caring, the neurologist. And very concerned. And said my case is fascinating and stumps him all at the same time. He was appalled at Cleveland clinics handling of my case. He was like these are joke diagnoses for someone like you who has never been given a spinal mri in 7 years… yet doesn’t walk. But he wouldn’t hospitalize me or anything like that. I failed his needle poky test in my legs especially. He wants to do $40k in 3 MRIs, 2 emgs and one eeg and I scheduled them all…. And then my husband lost his job. And within 4 days we lost health insurance. I have no aides. My friend stopped coming. Her life is busy these days. Plus I can only imagine you get rather tired of helping an eternally sick lady cook. All that hard work…. Gone.
To be honest, I’ve been so rough though, it’s doubtful my body can even handle that testing at this point.
So, I kinda made it.
Then didn’t.
Yet again.
And now no income.
Or health insurance during one of the rockier times of my illness. Absolutely fantastic.
Oh and a lawsuit against my husband that was supposed to cost like 50k…. But thankfully that’s since been resolved. It’s complicated. His pay was cut by 30%. He gave company 7 months. 8 employees left bc of steep pay cut and then the old place he left was upset losing him and sued him and new company. Just f***** fantastic.
I don’t write this for solace or comfort.
So many are going through so much suffering on this planet right now. Hence, why I write this. This separateness and aloneness and desolation so many feel is real. And a loud part of life for too many.
Right now, I have few options.
I did have my first fundraiser in 7 years. I’m entirely grateful. It brought in $220. So, um… yeahhhh. Not one of my FIFTY local family members attended. All people I was on amazing terms with before I became severely ill in 2017. It must be hard to show your face though in that kind of remorse after abandoning your family member for 7 years because they got a disease.
So, yeah.
I did a thing in 2024 and tried really hard to get help and support… and wowwwww, did it defy my greatest expectations of not working out
I’m on my own.
That’s for certain.
I need to find a way to get these csf leaks and mast cell episodes to stabilize. Yeahhhhh. That would be nice.
“This is the end of every song that we sing
The fire burn out of ash
And the stars grow dim with tears
Cold and afraid, the ghost of all that we've been
We tossed with bitter dread to our emptiness
And the birds falling out of our sky
And the words falling out of our mouth
And here is to love, so much love
Falling out of our lives
Hopes and dreams are gone
The end of every song
But it all stops and I prefer that we would never change
And when it all stops we always thought that we would stay the same
But it all stops and because our eyes asleep
To dream of boy and girl who dream the world is nothing but a dream
Where did it go
Where did it go
Broken voice will mend
To call us home
This is this end of every song we sing
Where did it go
Where did it go
Where did it go
Where did it go
Hope a voice will mend to call us home
This is the end of every song we sing
Alone”
Might as well share the news..
All of my hard work to get to speciality hospitals, mostly resulted in a dead end at this point. Due to a multitude of circumstances. Our medical system isn’t set up for cases like mine, my body has had further permanent crashing from these excursions and I’m in quite horrific shape these days. Yes, I’m trying things. Upping things. Downing things. But it’s just a giant storm. It seems likely I have that cci spiky syndrome where csf fluid leaks, tries to be released anywhere and messes with my optic and balance in ways that are too hellish to describe. Press repeat on these episodes. They also cause many other issues with my vitals, swallowing etc.
I made it to the university of Chicago neurologist. It was a VERY difficult trip on my body and the volunteers were more careless than usual. I was almost dropped. Again. And I’m just so over this at this point. It was all because of a very preventable situation. This is a theme I’m noticing with this volunteer. I’m so very grateful but she’s made some really bad moves that have absolutely contributed to my crashing further. And it was honestly barely worth what’s happened to my body since.
I do have o2.
That is useful.
Doesn’t do much for these massive brain inflammation flares though.
In good news, he was actually caring, the neurologist. And very concerned. And said my case is fascinating and stumps him all at the same time. He was appalled at Cleveland clinics handling of my case. He was like these are joke diagnoses for someone like you who has never been given a spinal mri in 7 years… yet doesn’t walk. But he wouldn’t hospitalize me or anything like that. I failed his needle poky test in my legs especially. He wants to do $40k in 3 MRIs, 2 emgs and one eeg and I scheduled them all…. And then my husband lost his job. And within 4 days we lost health insurance. I have no aides. My friend stopped coming. Her life is busy these days. Plus I can only imagine you get rather tired of helping an eternally sick lady cook. All that hard work…. Gone.
To be honest, I’ve been so rough though, it’s doubtful my body can even handle that testing at this point.
So, I kinda made it.
Then didn’t.
Yet again.
And now no income.
Or health insurance during one of the rockier times of my illness. Absolutely fantastic.
Oh and a lawsuit against my husband that was supposed to cost like 50k…. But thankfully that’s since been resolved. It’s complicated. His pay was cut by 30%. He gave company 7 months. 8 employees left bc of steep pay cut and then the old place he left was upset losing him and sued him and new company. Just f***** fantastic.
I don’t write this for solace or comfort.
So many are going through so much suffering on this planet right now. Hence, why I write this. This separateness and aloneness and desolation so many feel is real. And a loud part of life for too many.
Right now, I have few options.
I did have my first fundraiser in 7 years. I’m entirely grateful. It brought in $220. So, um… yeahhhh. Not one of my FIFTY local family members attended. All people I was on amazing terms with before I became severely ill in 2017. It must be hard to show your face though in that kind of remorse after abandoning your family member for 7 years because they got a disease.
So, yeah.
I did a thing in 2024 and tried really hard to get help and support… and wowwwww, did it defy my greatest expectations of not working out
I’m on my own.
That’s for certain.
I need to find a way to get these csf leaks and mast cell episodes to stabilize. Yeahhhhh. That would be nice.
“This is the end of every song that we sing
The fire burn out of ash
And the stars grow dim with tears
Cold and afraid, the ghost of all that we've been
We tossed with bitter dread to our emptiness
And the birds falling out of our sky
And the words falling out of our mouth
And here is to love, so much love
Falling out of our lives
Hopes and dreams are gone
The end of every song
But it all stops and I prefer that we would never change
And when it all stops we always thought that we would stay the same
But it all stops and because our eyes asleep
To dream of boy and girl who dream the world is nothing but a dream
Where did it go
Where did it go
Broken voice will mend
To call us home
This is this end of every song we sing
Where did it go
Where did it go
Where did it go
Where did it go
Hope a voice will mend to call us home
This is the end of every song we sing
Alone”
