Floor nurse we have had for two years is leaving

Hi everyone,

Just found out that the floor nurse we’ve had for two years is leaving. He gave his two week notice today. He was good enough to tell us so we have that warning. Lots of staff don’t and you find out the day they’re leaving or after, and I think that’s pretty unprofessional to do that to residents and even other staff! Sometimes staff in their own department don’t know other coworkers have left or are leaving which really confuses and saddens me but I don’t know work culture.

Anyway I know it will be chaotic with a new nurse. The nurse will have to be trained by a long term nurse, and often it’s the nurse that’s leaving if there’s the ability as in the timing is right. At this point he has school to go to and he doesn’t seem to care whether a new nurse comes while he’s still here. Which is fine we’ll have to see. I just hope they’re good. You get all your meds from your nurse, any incidents that happen, like the slightest scrape get reported to the nurse, if you’re in emotional crisis the nurse knows about it. So the nurses like it or not are a big part of life around here.

This transition is nothing new and I’m used to it. I know the routine of how all this works so well. And know it’s similar in other residential settings. I wish it weren’t that way but people do need to move on.

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No phone progress so far and no Mr. J meeting but doing well fundraising!

Hey everyone,

So it’s been a mixed couple days. Told you Sunday night my phone died. Yesterday my mom was gonna talk with Verizon but then ended up signing papers on the house which is really intense and sad. So she didn’t have time.

Today I was supposed to have my weekly Jonathan meeting. Was gonna likely talk about why I backed out last week feels like such a long time ago! Over the uncertainity killing me, and how things have been going and stuff. Plus talk phone and money and everything. But we asked front desk to call him and they said he said no to meeting. I reminded him like I did last week that we needed to meet every week up til the trip.

Hopefully he will see me later in the week.

In other news I’m up to $380! About halfway to the hotel goal.

I am very touched beyond words by the people who have donated and shared my stuff. My video has 30 views in only a couple days.

Please keep up the good work.

I’m finding paypal donations are the best

So please share:


Thanks everyone!

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My phone died!

I got my phone in 2009 This was so you know, my second phone ever! My first phone I got in 2004 while insisting I didn’t need a cell phone! At the time I hardly had anyone to call.

I’m glued to my laptop more than my phone. But when I do get talking to people I talk for like an hour at a time.

I’m on a family plan and must not be killing the minutes because no one’s complained about it. We can get free government phones. Not sure they have voice stuff though for the blind. Good thing Jess has hers.

Anyway for like the past um at least six months mom and I have been like you need a new phone how are we gonna get you a new phone?

Kinda complicated when the phone store she uses, with the nice staff she has worked with for years is across the country.

But mom had a sort of plan that I wasn’t thinking too much about until now. For the past couple months at least the phone has been doing awesome tricks like randomly shutting off, making weird noises and just being temperamental. Had a regular long call with mom yesterday. I will always tease Kat, my deafy chatterbox that she wore out my phone LOL! Because she was calling it today while it was charging.

But whenever Jess walked by usually she sees it charging up. Either it was making noise like it was dying or doing nothing. So after dinner we took a close look. Jess blew the dust off, we took out the battery and put it back in. Plugged and unplugged stuff. Nothing.

Mr. J did get a battery a few months back I think in December or something. But I think the whole thing just died.

So mom’s plan is to take these flip phones she’s had that haven’t been used, and see if they can activate it and then send to me. Then Mr. J and I take a field trip to Verizon around here and they put everything in the phone.

Hopefully this will take like a week or less because we have way more issues to worry about! Not that this isn’t top of the list now.

But to think all afternoon all I was thinking about was I haven’t gotten money today for my fundraiser and how to like fundraise better. Now I have real problems LOL!

But I have a theory. I think Toby killed my phone just to say hi. He’s probably bored just settling into being dead and so thought well I never got to say goodbye in person but she’ll notice this!

So we’ll have to see. I always feel a bit safer with my cell on me like even in my room because I’d rather call the front desk than pull the call light I just don’t like doing it never have.

But it’s only for a couple of days.

Just do not get me a smart phone!

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unexpected great conversation with mom! Who’s totally on board with the vacation

Hey everyone,

Had a really good day.

This shows how you never know how my mom is gonna react to anything.

So I hadn’t actually talked to her for a few weeks. Because she works, and she was really busy with Toby and her back and everything.

So we talked today and she was so depressed obviously. Because of Toby. And I guess she/ the vet especially thought that he was gonna live another six months to a year. Which I didn’t know at all and was kinda surprised by. He sounded pretty bad every time I talked to people about him, and when I told other lab owners and his barking over anxiety was really not good.

But I can see how it really hit her if she was expecting a year.

So she took down his cage and just everything. She was sitting home alone. So we talked about that for awhile. Talked about her back which I guess she’s keeping getting her tests done. And I guess she can call the hospital in boston and be put on the cancelation list.

She was saying for the third time how much she missed me. So I took a breath and said I’ll just totally forget this if it’s gonna make you upset but…

And I told her about my new friends. The conference, the waived fees. The chance to see them and do something awesome! The fundraising our plan for how many days we’d like to be there.

She loved it! She’s like that doesn’t make me depressed that makes me happy! Now I have something to focus on!

And she said that we’ll be able to stay at the house, that no one knows when it will sell but it’s a day at a time thing, meanwhile let’s hope for the best and really try and do this. So yeah!

We can take the nonconference days off the bill for the hotel room which really makes me happy! Though it’s still gonna be high I can’t believe they literally have a $20 fee for like checking in! I’m gonna call and ask if there are other fees for stuff. It is a boston hotel that’s amazingly low priced. Hey Jess and I totally deserve a luxury vacation!

But the best part will be seeing the house. Was sitting at dinner totally mentally walking through the house, more like running! I used to run up and down the stairs, never held the railing. Scared first time sighted people paranoid about blind people falling! I was also mentally feeling the car pull into our driveway and being like I’m home!! I’m home! Sammy Squeal!!!

But I also know things will not be the same. No toby. No simon. Probably lots of stuff taken down/ put away. I’m hoping they’ll put some stuff back in my room so it looks somewhat like my room. I had this beg desk where I had my desktop computer, Braille blazer printer (ugh that thing was such a pain!) and everything. They took that all out. I know the desk was very annoying though because it squeaks and lucky would use it like a trampoline to make noise in the morning. Not that his meow isn’t loud enough. My mom put it on speaker.

So yeah I’m just like I could go through the ceeling excited!!

I’m sure I’ll come back to wearth when money issues happen or some anxiety happens or Jonathan throws some “we need to be prepared for everything so am gonna ask you a question” topic at me.

But for now hearing my mom is actually happy about this like makes my month!

Literally, I could have called her thinking she’d love it and she woulda gone off so loud you could all hear her through my cell! Which by the way I need to get a new phone. Hoping for a flip phone will not get any kinda high tech iphone just no!

So yeah. Very exciting news of the day

Here’s my paypal again just in case people didn’t see it earlier LOL


And I added a video to my fundraiser page. Which I’ve gotten $295 yay!!

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planning the trip is back on! hotel room reserved!

Hey everyone,

So as you know from my post the other day, I was sure I could not do the trip. Just was overcome with anxiety around whether my parents could pay or not.

And how long we would have to wait without paying anything or have to pay something and then get charged or something!

But since Toby died it just compelled me to find a way. When Anna of all people, heard about everything she really wanted me to reconsider. Tell them I made a mistake and go back to planning.

Worried they’d think I was really weird I contacted them and explained everything. This lady was awesome! She said for the hotel and conference we have up to forty eight hours before to cancel and won’t be charged.

So that’s a huge relief. And we don’t have to pay when we book and can cancel nights we book if needed so we did.

We booked it that Thursday through Wednesday. And it’s a relief to have done.

I told my dad it’s on again but told him all the positive stuff about how we can cancel almost right up to the day and that I have $246 and that I’m happily fundraising. He called me meathead.

He’ll have fun talking to my absolutely stressed to the max mom as they’re still literally not sure when the house will sell. Dad said it’s not likely they’ll be just gone in august but it’s possible if they get a good offer. Which really amuses me because they have no idea where they’re gonna live.

But anyway now I just have to keep fundraising.

So please please share my paypal link as donations to there are the full amount instead of youcaring processing the payment and taking some out


Just share share away like you’ve never shared something before! Pretend your mom sent it to you and if you don’t share it you’ll get grounded LOL

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Sad sad news Toby was put to sleep Wednesday night

Hi everyone,

Am very sad to report Toby our lovable and crazy yellow lab we’ve had for 12 years was put to sleep Wednesday afternoon.

For a long time the vet was sure he had some mass on his spleen but didn’t want to touch it because the dog could die in surgery. He had other issues getting older like hind legs going, back going hearing loss and constant barking.

My mom was the one to always take care of him so it has hit her the hardest. This vet we had for him was amazing we would drive about forty minutes away to see him because he’s one of the best. He had a seizure Tuesday night and after that was totally pacing, not moving not wanting to eat or anything. The vet felt the fluid in his stomach and could just tell it was time.

Krissy rushed home from Maine in two hours and was the one that took him along with my parents.

I wasn’t extremely close to him I’m not a dog person but he was still my dog. He’d be in the car all the time when my mom drove me places. Especially when I went to community college she’d drop me off and then Toby would have a bagle at the bagle shop. That was before we learned he was allergic to everything under the sun. But yeah. He knew what “watch your tail” meant in the car so his tail didn’t get hit by the door.

He was pretty smart. All our animals knew I was blind so I they didn’t get stepped on. But yeah it’s very sad. My big depression/ anxiety thing has been about losing my pets and family and everyone and not being able to see them.

Which is why I have to do everything I can to make this trip work.

Now there’s jjust poor lonely Lucky. My very special cat. He’ll be very lonely I’m sure.

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Book review: Hidden by Cathy Glass

I just finished rereading another amazing Cathy Glass memoir.

This book centers on nine year old Tayo. He arrives at Cathy’s door shortly after new years after having been picked up by his school by the police. Social services were called several times but had a hard time tracking down Tayo. His mother never came to the school for anything except to drop him off the first day. The school was very concerned about Tayo’s appearance always wearing the same clothes, hungry, washing up in the s school bathrooms, and talking about staying at an alarming amount of people’s houses over the past six months. Finally social services caught up with the situation and Tayo was placed with Cathy.

This was more than a basic situation of neglect. When Cathy looked at the forms that were supposed to show Tayo’s history and all other medical information they were completely blank except for his name and age. Tayo said that he’d been in this country five years but had never seen a doctor, rarely gone to school and was very guarded at first about his past.

Tayo’s mother Minty was an alcoholic drug addict and probably mentally ill. The social worker could never track down her address, she would not go to meetings when asked to and often was seen out of control yelling at the social workers. She demanded supervised contact but nine times out of ten hardly went.

It was clear from Tayo’s stories, once he opened up, that he had been on the run avoiding the authorities. He had no passport, wasn’t registered anywhere in the UK. He and his mother would stay with friends, in bed and breakfasts, though they had to run away before the owner found out they wouldn’t be paying, squats, on the streets or anywhere they could.

Tayo would lie, steal, and manipulate situations. Though much of the time he was genuinely polite there were times his anger would come out, or he’d lie and you could see the toll the trauma took. But overall he enjoyed life at Cathy’s with routine and firm boundaries and the ability to just relax and be a kid.

Meanwhile right from the beginning Tayo had emphasized that he wanted to go live with his father and Gramma in Nigeria. Which was a complete surprise to everyone as there was no record of him in Nigeria or way to trace his father. No one was sure he even existed. The rollercoaster ride this envolved was raw and emotional for everyone. The unbelievable emotional ending is just so heartfelt.

Cathy states quite clearly at the end of the book that Tayo’s story is not something that rarely happens. That in the UK there are many children that are “hidden” not registered and living in horrific conditions. She was so touched by her time with Tayo and would always be in touch with him.

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Financially Lockd up: How the policy of only $30 a month at psychiatric facilities is physically keeping me stuck

I have lived at a psychiatric facility, called a specialized mental health rehabilitation facility, or psychiatric nursing home since 2013 here in IL. IL seems to be the only state that has such facilities. I have gotten great benefit from living here, such as constant medication monitoring, psychiatrists and medical doctors who come directly to the facility, 12 hours a day of case management/ mental health staff availability, and have been lucky enough to be under the care of the clinical director, who tries to make this place as nice as possible under the circumstances of state policy.

One policy I am hating more and more is the IL mandate that anyone in any kind of nursing home, rehabilitation facility or otherwise have all their SSI or anything else that counts as income, go directly to the facility as room and board and only get $30 per month!

At first this didn’t really bother me. I was too depressed to care. Then I realized how though staff will say they provide everything residents might need here that’s actually a lie. I was shocked when I found out they don’t provide shampoo or soap that I would consider any kind of good quality. They have soap dispensers like the ones in public restrooms with the same cheap quality soap nd you’re expected to use this for both your body and hair! It goes without saying that that just is not a workable solution to have the lowest quality cleaning products.

They do provide toothbrushes toothpaste and mouthwash but again extremely poor quality. I personally use an electric toothbrush because it’s best for my teeth, and of course need money for batteries.

Women will understand this next point. They provide pads for monthly situations and probably tampons, but extremely low quality. A one size fits all thing, and the size is very small. I made the nurse laugh when I picked up the pad and asked them, a male nurse LOL, how anyone with a normal period could use it!

And those are expensive like $7 per package!

Then there’s the food which I’ve blogged extensively about. I need to buy oatmeal, because I will not eat anything they serve for breakfast except on the off chance they serve pancakes, waffles or French toast. The oatmeal they have is total plain oatmeal and disgusting. For whatever reason, I get physically weak very easily if I don’t eat. So as much as I’d just like to skip breakfast I can’t. Then there’s the issue of a huge percentage of the food upsetting my stomach and I’m sure others. So I have to buy snacks, or order out more frequently than I would ever want just to stay like not physically feeling terrible all the time. They only provide one snack a day, at night, and they’re usually very hard cookies.

These might seem like small things but when you don’t have them it makes things hard. And I have heard of other facilities giving residents even less, not providing towels, less food ETC. But that doesn’t make it right.

My mom does add to what I get each month by $50 to $100 per month. Which I realize others do not have. Still it’s tough both on her and on me asking for money.

This situation has really hit home for me this week. As my readers and friends will note, I have been trying to take a trip on short notice. There is a conference in Boston MA, which is where I am from. Well MA anyway. And believe it or not I have not seen my family in six years. It’s all due to finances theirs, but especially mine. If I got even $100 per month, and they actually provided decent quality personal care items, food and other things I mentioned I could save up myself to take a visit long before now.

A huge part of my depression and anxiety since moving here has been that all my family will die and I won’t be able to see them. That might sound dramatic but it’s actually happening. Since I’ve lived here I’ve lost two grandparents the others are in their eighties and one is 94. Two pets, just lost our dog yesterday. My family is selling our house that I’ve lived in all my life. My mom is experiencing major medical issues that may or may not cause her to become a wheelchair user depending on how things go. I missed my sister’s high school graduation, all of her college years she graduates this upcoming year. Basically six years of family life the majority of which spent with this $30 a month policy which might as well be a locked door. It keeps me and others here, from doing absolutely anything beyond the minimal shopping trip. Many here spend the money on cigarettes and coffie and don’t have anything for anything else. Some do have family close by or the ability to go on passes to see various people, but many have no outside family, friends, have been here 15 years or more and will likely spend their lives here.

Seeing my family change and get smaller hurts me to no end. And there’s not a thing I can do about it at the moment.

I had registered for this upcoming mental health related conference in boston. I had started working on this trip due to the endless support of new friends and others. A huge anxiety for me though was the not knowing if my family could contribute at all. And then my dog got put to sleep last night. I’m not a dog person but he was a pretty awesome dog. And it really hit me that more and more of my family is dying, getting older and just plain changing. I can’t be the same family member that I could be if I lived closer or could plain just take a trip once a year. I do feel locked away from family and friends.

I canceled my registration for the conference but since last night the urge to somehow get to go is still very powerful. The new friends I’m making might lead me to a new life, or at least expand my life. Be people I could visit regularly and perhaps work with to figure out a living arrangement that works emotionally/ physically but where I am not locked away financially.

The take away for me is that this policy is basically traumatic. Keeping people from getting better and like building a life. And for people who say the community services or state programs to help people move out are the answer sadly they are very lacking. For people with multiple disabilities they won’t even talk to you. Nine times out of ten the person gets set up with services, and then services get lax or just stop the person falls through the cracks and then come right back here.

I don’t know what to do about my current situation. I feel so stuck. I know I can’t go back and forth around canceling and then signing up for everyone’s sakes but I just feel compelled to try and figure something out.

Below are my paypal and fundraiser links. If people could share or donate even $5 I would be so grateful. I will save the money and if not this next month then sometime soon will hopefully have enough to make a trip back to my home state.

This policy needs to change I just don’t know how. I think as caring as staff are, even the clinical director who I know is genuine, they really don’t get the toll of the financial restrictions we’re under and how it makes our lives very limited.




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Good meeting with Jonathan and had to raise my funding goal

Hey everyone,

So today was really good. Jess and I caught Jonathan sitting in the assistant director’s office with the door open, she’s on vacation right now, and he had time to sit down and talk about things.

He was very impressed about all I’ve done! He’d never really heard of fundraising pages LOL! He asked if you don’t get all the money do you hit a button and it all goes back to the people that gave it? I’m like no!

But anyway he was really happy with all the work I’ve done. He said when he hears me talk he can hear the excitement!

Now to approach my parents. We started rightly with my Dad because he’s very honest and straightforward and not emotional so he won’t freak out.

Jonathan said I should talk to him and tell him everything and then write and tell Jonathan what the answer is and then he’d talk to him. And figure out exactly what my parents financial and personal limits are. Which is why I love this guy he’s such a good emotional detective and he just gets people to be honest. He’s like we’ll talk man to man I’m like yeah!!

That’s why my Dad shoulda had a male therapist instead of this weird woman he got for ten weeks who said he was just fine LOL

Anyway about limits they’re gonna be there and it’s really sad.

So I knew that them selling the house and mom’s medical issues have been ongoing. To the point Jonathan has been like we can’t keep waiting for that to resolve itself because it’s a chronic thing that we either have to figure out how to visit them around that or tell the truth or something.

But I didn’t know things had gotten into such crisis. Apparently they’re like putting the for sale sign up this weekend! And he doesn’t think the house will sell by august but hey it’s a good house! It better not sell too quick because they don’t have any idea of where they’d move to yet! But yeah didn’t think the house thing was that pending.

And my mom is just doing horribly with her hip issues and her spinal disks thing and waiting way too long to get it done and then having to get all new testing, and I guess her appointment in boston was supposed to be the 9th, but this doctor is so booked (boston doctors rule!) that she got pushed back to the 30th. And just found out I think yesterday. And is just as my dad put it “totally under the weather!”

He said she might need a wheelchair. Don’t know how serious he was but he usually doesn’t say stuff like that. I said I’d push her into walls. We had a good conversation on stuff. It was pretty much what I thought he was straightforward on it and down to earth, he said he really wanted to see me wanted to make it work but he just had to really be careful about when he told mom and how he did it.

Jess and I are totally flexible on whatever works for them. We just don’t want to stay at strangers houses or anything. Jonathan had said maybe if the hotel room costs were too high and that was an issue maybe we could get driven back and forth from the conference. But it sounds like the house might be the issue.

To reflect this, and be on the safe side we added the extra hotel room nights to the $625 we had originally put up. Which by the way I have almost $100!

So the new total is 1020 minus a hundred which is whatever LOL

I feel bad for raising the goal so early in the fundraiser which I read isn’t wise that it’s better to have the fundraiser gain momentum first and then raise. If only we heard about this in like may!!

I can always change it which is why it’s good about this site.

I just hate asking for money and those fundraising FB groups are just full of people in such need! Like everything you can imagine: medical bills, school, rent, animal bills, just so sad ya know?

When I get my SSI back assuming I have the money per month after paying rent somewhere/ all my personal costs I plan to donate at least $5 somewhere every month. Because it’s so needed.

For suspicious people like I was before Sunday, these sites are not scams and won’t harm your computer. Ask Robert KingettLOL

So anyway it was a good conversation I believe my dad and I are really on the same page and we’ll just have to s see what happens.

I’m just sad about the house issue I really wanted to see the house before they sold it and take some good youtube videos and pictures. I’m hoping if we can’t stay at the house we can go over there so I can hug Lucky to death. And listen to Toby’s new I’m a deafy dog and I bark for hours trick.

Yeah don’t know what’s going on there.

So yeah it was a pretty good day. This thing is gonna be a rollercoaster though! Jonathan said Jess and I should have a conversation while it’s still possible that I may go, about what it will be like if it all falls through. He has this awesome way of gently preparing you for crisis before there’s even a crisis. I wish everyone had him for a therapist!

Will keep you updated.

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Fundraiser links Help Sam reunite with her family and friends!

Hi everyone,

So this is the important post!

Below is the link to my fundraising page on youcaring.

I’m trying to figure out these fundraising sites. I guess they take something out of what people donate, and you get charged like $1 or $3 I’m very confused because two people said two different prices.

Anyway on the page it has the story of my situation.

Below that is my paypal link. Which I am pretty sure you don’t get charged anything and no money gets taken out of what you donate.





Please share on facebook twitter reblog or anywhere. Will be uploading a video to the youcaring page tomorrow.

Thank you to everyone who shares or donates or just reads! I already have $40!

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