autoimune disorder, Glaucoma Robbie’s medical crisis

Hi everyone,

So Robbie made a comment on my last post that will make no sense if you don’t know the story of what’s taken place this weekend. Because of his online presence and how famous he is, seriously! He has to cancel like readings and smoothie time because of this crisis! I wanted to wait til he said ok before like telling the whole world.

So for major background. In may 2015 he had this immune system attack thing where a bunch of out of control blood cells attacked the back of his eye. The doctors said his immune system is paranoid, or in overdrive basically thinking there’s something wrong when there’s not and going crazy. So this happened like in the middle of the night and his eye was bleeding and Jack our mutual friend at FP I think was the one to call the ambulance. When he got home from the hospital half the staff including nurses! Had no idea this had happened. There was a lot of testing and Robbie is super smart about medical stuff and the eye I guess he read about it in his spare time because he’s such a nerd. So he was like questioning the doctors and playing detective (they wrote this in his chart!) eventually he went to see this epic, extremely good looking indian doctor. Who told him about the immune system thing and gave him eye drops. He slowly got his vision back. He has 20/200 in one eye, and nothing in the other. I forget if it’s left or right so yeah.

Anyway the only other odd thing was proably like six months ago he tried an antidepressant. And he didn’t have the time to have it kick in because like a couple days later it lowered his body temperature. It was like I forget how low but people were freaking out. And they said again it was his immune system in overdrive.

But nothing was done. He had this really good doctor saw him once. Had asked staff several times to make follow up appointments, of course probably put it in the back of his mind for awhile because things seemed fine. But still the lack of any coordinated medical care really kills me as it’s supposed to be one of the main services at this place.

So anyway Alexander our lovely director decided to buy these probably inexpensive side lights. That glare like crazy. There were several people with low vision having problems due to the lights and we both were trying to write someone to advocate about it. Because it’s totally crazy if you think for a second about it that a place for the blind has lights that are hurting people’s eyes and changing their vision.

So he thought it was that. Well Saturday morning he woke up and he couldn’t see anything out of his good eye except random flashing lights. He goes to the very zoned out nurse, (the nurse was here when I was trust me he’s terrible) and the nurse refuses to call the ambulance. He says he just needs eye drops and he’ll be fine. CCouldn’t find the doctor’s info just totally didn’t care.

Well so Robbie actually had to call 911 himself! Then when the ambulance got there all the staff acted like it was them that called and were like OMG thanks for getting here so fast and whatever. It was pretty bad. He acted the same way when I had my seizure one of them and yeah. He also told a woman who said she was gonna kill herself and was quite agitated that she’d be fine. He’s made lots of mistakes and why he hasn’t been fired I don’t know. The sad part is the truly caring staff members we had all left because they couldn’t take the horrible work environment.

So yeah more testing and stuff. He was put with this doctor who was a real snob. He put him in his place though he can tell that story on his own blog but it’s hilarious!

Anyway they said he has glaucoma. And it’s really bad. And the pressure in his eye is incredibly high. They say the only thing for it is laser surgery. At the time I heard about this, yesterday, I sat on the phone and thought about everything. Because this doctor seemed unprofessional in his assessment I wanted Robbie to get a second opinion preferably from the other Dr. he had. It sounds like he did. And so they’re going forward with this.

This immune system thing hasn’t been fully investigated. A friend of mine says that before he has surgery they should do a bunch of other tests and stuff. But I guess there isn’t time. He’s in a lot of pain, the eye drops actually make it worse, and they said that if it’s left alone the pressure could go to his brain. Sadly the snob doctor said outright that Robbie wouldn’t get any sight back. Which is why I wanted him to see someone else. I guess the point of the surgery is to open the ducts in his eye that are small to begin with and srinking to relieve the pressure. Not to restore his sightat least a little. I thought Laser surgery for glaucoma was to do that.

Anyway we’re all pretty upset with Friedman. Because basically it’s on them. There are nurses there a medical doctor comes in all residents should have coordinated medical care especially hello when it comes to blindness related stuff. It’s so ironic he loses his vision through what probably could have been prevented situation at a facility for the blind.

But in actuality another thing is that there are no blindness speacilists/ teachers or eye doctors at the place. I mean they have an eye doctor come in every so often but like with the psychiatrist you have to be on the list and if not they just forget about you.

But the thing about no specialists there he like will need to learn braille and how to do mobility totally blind and stuff. He’s always had this same amount of vision in that eye so it’s huge for him. They have this random strange blind guy who can’t control his guide dog come over to help with computers (he makes them worse Robbie had to re-fix mine after he messed with it) and braille. He’s like no I’m not seeing this guy. So instead of a place for the blind having all the resources you’d expect he has to take a braille class like through the mail. It’s called Hadley courses. I’m sure it’s great but I mean think about it this is crazy there should be all this stuff in house. But none of the staff here know braille or assistive technology or probably have never even walked around with their eyes closed like a lot of weirdos who meet a blind person do. It’s sad it really is.

Like I said the really really good nurse and CAN that were here left. And now everything is worse. But they left because they couldn’t stand the uncaring attitude the director had and how he was micromanaging the staff and basicallyall the staff in the whole building don’t even meet and talk anymore because he has them doing endless paperwork and is just wicked strict. He’s just all into money and it’s not a budgit issue. They’re financially fine probably amazing actually but obviously they don’t care about residents at all. I’m a bit worried about him recovering from the surgery because honestly the other residents care more than the staff does, and bring him stuff and check on him. And like I said the first time he went out the staff didn’t even know what was going on. This second time he had to call the ambulance himself. And he has to give his SSI check to these people why?

Anyway I will keep you updated and I’m sure he’ll write a novel on his blog. But lastly is anyone’s ever experienced this or knows anything about autoimmune disorders particularly causing glaucoma please let me know. I’m also going to try to find advocacy resources to like put friedman in their place. I don’t know how but this is not ok.

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