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By the light… of the moon.

“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.”

This verse has been in my head lots past few months. I have no idea what my new baseline is. I can confirm it may be worse than any baseline I’ve yet had so far. I was on baby food for gastroparesis after a saline iv for 6 days and I was starting to eat more solid foods.

Today I had a seizure. And what happens, it seems, is everyone is too worn out around you to act on it when you have been like this for 7 years. I couldn’t move or talk afterwards. But when I could, I texted my husband to tell him. Then my two friends that assist me at times. My husband became angry. When I could talk, I calmly asked him what he saw as potential solutions and he just said he can’t take care of me anymore and this is insane and blamed me and yelled at me for things. So, I calmly just stopped talking. That’s a dead end. I thought this might be an opportunity to get me in a big Chicago hospital …. But he has no interest in that adventure he said. And it doesn’t seem my friends do either. A ambulance would be very expensive locally with new insurance, so, I was notable to goin and find out what type I had or any details. I can’t sit up at all though. Or very bad things continue to happen. No commode etc.

I’m in utter shock.

So, I’m writing, here, because my story overwhelms most drs, most friends, most family and people have a choice here. I. Still get to exist. Even with this heavy heavy burden I seem to have to carry.

Oh, Mayo Clinic rejected my case (neurology department) 2 weeks ago. Despite 3 drs writing a written referral. And so my PCP said let’s get you into a local neurologist asap to get you evaluated and …. I called all ready to do this. And….. the receptionist said they won’t take my case. That the form says dysautonomia snd they don’t treat that. I didn’t even use labels bc I was being so careful. But she had the label the PCP and the er dr wrote on referral.

My friends that normally stop by to help aren’t. For weeks now mostly. And it’s so strange how when you are in the hour of your greatest need, everyone vanishes…again …time and again.

I have nothing insightful. Or clever.
I gained so much independence back….and the whole floor has now fallen out. I’m now entering an entire new realm. And there’s nothing I can do about it tonight. I keep trying to sit up and move to commode but it’s legitimately impossible as of now. So, I guess o ask my son to bring me wipes, a toothbrush …and I am safe. I am safe. I don’t know how I will get food Etc right now but maybe just remember the banana beside me and rice cakes. And I can’t keep asking my son to get me food. Plus he leaves soon. But, maybe I can find a way to hire aides tomorrow. Because my family has utterly failed me. Utterly. You may say well your husband keeps you under the roof. Yes snd I am grateful. But my story should have never played out this way. This is partially due to massive neglect on so many around mes parts.

I literally cannot even imagine leaving someone I love to just ….play survival with no baths. No hair washes. No asking for how to help me access food. I can’t. I could never leave someone I love to rot like this.

Anyways.

Sorry I don’t have more pleasant news.
Need to get off the screen now.

🙏

Picture was from last week when I saw a glimmer of hope…. For 5 minutes.

Comments

I see a beautiful woman.

I hear a courageous fighter, and a desperate cry for help.

You have a way with words, sunshine. You tell your story so well. I know that is no comfort when you are struggling to even eat and get the very basic care. I'm sure you're tired of hearing what a fighter you are. It would be better if the battle could just be won, right? I admire you still cling to your faith.

I guess that's my way of saying I hear you, and wish I could be there to take a turn to care for you.

This old wolf would so like to go all rambo on all those that have let you down. People shouldn't be treated this way, and there should be consequences. But, this wolf is on his own back right now, and may be about to take a major turn too.

Thanks for sharing yourself so much with us, Sunshine. You shine bright in your struggle. God bless.
 
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Maybe your PCP can arrange some help at home for you? There must be some sort of system to help those in your situation. By the sound of it you have had an episode of what does happen to some with me/cfs....sort of total body shut down (what you describe as a seizure). Those you know who have stopped helping are just running away from something they can't cope with. Would you say they are weak people?
 
I see a beautiful woman.

I hear a courageous fighter, and a desperate cry for help.

You have a way with words, sunshine. You tell your story so well. I know that is no comfort when you are struggling to even eat and get the very basic care. I'm sure you're tired of hearing what a fighter you are. It would be better if the battle could just be won, right? I admire you still cling to your faith.

I guess that's my way of saying I hear you, and wish I could be there to take a turn to care for you.

This old wolf would so like to go all rambo on all those that have let you down. People shouldn't be treated this way, and there should be consequences. But, this wolf is on his own back right now, and may be about to take a major turn too.

Thanks for sharing yourself so much with us, Sunshine. You shine bright in your struggle. God bless.

Be still, my heart.
It’s such a cruel illness and so many of us seem to be United by invisible threads.
Thank you for your words, encouragement and support. It truly helps me in ways you don’t know.

Please take good care of yourself.
I’m so sorry you are struggling so lately as well. My god, it’s such a beast of an illness.
 
I'm almost speechless. I too cannot imagine leaving anyone to rot. You mentioned maybe hiring aides. Is this covered by insurance?

Sending so much compassion your way.


I know Tammy 😩☹️
No, unfortunately aides are private pay only. Sigh. Trying to see if a church can help me raise some money. I need to get them my story. Because I have no choice at this point with the level I’m at. And my home health care nurse can’t help change me or bathe me or anything. 15 minutes and vitals and wound care stuff only.

Thank you, love 💕
 
Maybe your PCP can arrange some help at home for you? There must be some sort of system to help those in your situation. By the sound of it you have had an episode of what does happen to some with me/cfs....sort of total body shut down (what you describe as a seizure). Those you know who have stopped helping are just running away from something they can't cope with. Would you say they are weak people?

Unfortunately no. My pcp ordered home health care but it’s almost been 6 weeks and she’s being discharged next week bc insurance only lets you do 6 week segments. It’s ok. She can only take vitals mostly for me anyways.

So, today I called a home nursing service and they said I can just hire aides so they come out next week to evaluate me. 🙏 this could seriously assist me in so many ways and way cheaper than the nurse.

Yeah, Exactly
My. Body just has extremely limited resources right now.

Very well said Andy and you raise a good point. Thank you for reminding me. I don’t like playing a victim card and I try not too but I definitely use this space as a vent tool to get my feelings out. I do have deep compassion for my family though. And can only imagine how they feel not being able to handle hard things. I actually do think about it. I appreciate you helping me to re center.
 
Dearest Sunshine, I am so sorry things have gotten more intense and difficult.

I"m grateful PR exists so you can come here to vent and just scream into the wind, if that is what is needed.

I"m praying for you and your husband and children to receive assistance and loving care you all so deserve.

It's very hard to process the world right now. Huge challenges seem to exist everywhere we turn, or we are tasked with having to accept so many disappointments.

Alot of soul polishing, it seems like.
 

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