“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.
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.
