weird day

Hi everyone,

Forget when I did a daily update. But anyway. Today has been ok. Different morning routine as Jess went to a doctor’s appointment. I thought I’d be able to happily skip lunch. I hate going down to meals even if the food is ok. But sigh she came back too early. But anyway we did have lunch and it was good. The health department is here so I’m sure that’s why.

I did get to sit with Kat and she was talkative so that was nice.

Then waited around for Edith to come by with Krystal so we could have our official about me talk. She didn’t come til three. About which time I figured she wasn’t coming at all and was getting anxious and tired waiting. But we did have our meeting. It was ok. Krystal is deffinetely very different. Something hard is that she’s not as verbally responsive as Edith. For a blind person it’s important to give verbal cues you’re listening. Not all the time. And if I know someone even if they’re not saying anything while I’m talking (and it’s hard to do this when I talk up a storm!) I know they’re listening because I just know them well. But especially for newer people it’s important to give verbal confirmation that you’re listening. Because I can’t see your face. Often I can intuitively tell if someone is distracted or how they’re feeling because I can read people well. But especially with a new person it’s hard. I’m used to Edith being totally engaged. It’s her personality anyway and she said how she knew to verbally engage more with me especially. Krystal on the other hand barely says yeah when I’m talking. It’s very quiet. And after says basically nothing. So I don’t know how she’s feeling or what she’s thinking.

Like I said I’ve had a lot of experience with professionals. Some believe it or not purposely put on a show of being blank or neutral. For whatever crazy reason they feel this is somehow therapeutic. I can tell usually when that’s happening and sometimes can pretty much tell what they’re real feelings are behind the mask. Which makes them pretty mad when they find out they can’t hide from me. But I really don’t think this is the case. She seems genuinely friendly. She also doesn’t seem like other professionals I’ve met who are the totally burnt out, or don’t really want to work in this field kind. They’re disengaged and low energy because they simply don’t fit in in this kind of work. They at a deep level don’t know how to respond. I feel bad for people in their personal lives. Because they are so low energy. But that’s not the case either. I think it’s just a personality trait. We’ll just have to see what happens. I don’t see her as judgmental of me at all when I explained how I am. Things that trigger me, and things I’d like to do for fun. The one time I saw something clearly was when Edith mentioned teaching me sign language off youtube. Krystal was very confused. I wonder if she’ll try or just say it’s too hard. Hoping we’ll get an ASL speaking caseworker that I can bug. We had one for three months who was awesome. I wanted to switch to working with him. Because he was extremely engaged. But then he left to interpret in schools. The other one we had admitted she learned ASL off of youtube. And was the disengaged type. Kat hated her which is saying something.

Anyway that was kind of tiring getting so little back after telling her everything. I guess it will just take getting used to. At least I don’t feel intimidated or like I could never open up because of the intensity I’d get back. Or the cold clinical attitude. It’s just hard to get nothing back. And I don’t think it’s her fault. Professionals that purposely put on a clinical mask really bother me. I am very hard on these people because I call them out on it. I tell them what I’m sensing behind the mask and how wrong it is that I’m sitting here opening up and they’re not treating me like a real person. And they think they know all this stuff about mental illness when they’ve probably never had to deal with it. I’m so glad I have Jonathan who is very much genuine.

We are getting two new PRCS well three assuming we get one of the many applicants that came pouring in off my job add. Edith and Jonathan and I didn’t pick Krystal because she was an amazing fit for me. She was the only good option here right now. So we’ll see how things progress.

So anyway I’m kind of tired. I can’t believe how the week is flying by. Edith won’t be here tomorrow because she always has Thursdays off. And then Friday we say goodbye.

My box to ship off the computer also still hasn’t come in. And Jonathan wasn’t in today. So in all likelyhood will have to wait til Friday. Which is fine I guess.

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Book Review: The Weight of Silence by Heather Gudenkauf

So I just finished reading an amazing psychological thriller called the Weight of Silence. It deals with selective mutism, alcoholism/ domestic violence, child abuse abduction and the choices we make in life that affect how we raise families.

Callie is seven and has selective mutism. She has the physical ability to speak and did until she was four years old. Then her mother miscarried due to her father’s drunkin rage and Callie witnessed this. Over the three years that past it was thought that this trauma was the catalyst for her mutism but it ends up being much deeper.

On a Saturday morning Callie is dragged through the woods by her rageful alcoholic father in search of the man he believe is her bio father. This man happens to be a police officer in town, and her mother’s ex-gf. Meanwhile Callie’s best friend and soulmate Petra goes out into the woods following someone she sees outside her window. Unraveling the reasons behind the girls disappearance forces everyone to confront their past choices, current relationships, and pushes them to the edge of what they know about themselves and others. The woods and nature are a backdrop to this well told story and the emotional highs and lows, chilling flashbacks and twists and turns make for a story grounded in reality. The reality of abuse, being so traumatized youcan’t speak, family relationships and what it takes to heal. I highly recommend this book! It’s a bit different as it has an element of a mystery/ detective book which I don’t normally read but love the psychology behind each person’s choices, feelings and downfalls. And the ending is realistic even in certain elements of tragedy that occur, as well as not being overly happy even when very important good things happen. It’s hard as a mystery story as I don’t want to give anything away. But if you’re interested in any of these subject I’d say read!

If on the other hand the topics of severe trauma, alcohol abuse, domestic violence and abduction are too close to home read with caution. Let me know your thoughts!

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I love the indeed website!

So as I mentioned previously, the one thing that’s kept me sane this week is screening PRSC applicants. Linked in and word of mouth were going nowhere in terms of finding anyone. So I put the add on indeed. Literally googled job search sites and found it. OMG we got like fifty applicants in two days! No spam either. Many were very good. Some weren’t what we were looking for and some clearly didn’t know what a resume was. One person just put like one sentence in a document and that was it. And I found a new tool for OCRing PDFS so Robbie doesn’t spend writing time on it. But yeah I was so so happy. We’re very interested in/ really need both male applicants and people who speak ASL. And we found a bunch. So yay. Jonathan and I went over them on Friday and he gave me even more tips on how to screen people. I should work in human resources. Uptight monica would probably have a heart attack if she knew I helped with this but hey it seriously kept me going so yeah.

Looking for a job? Want to get a million applicants for your job.

Go to:

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It’s here my ASL video!

Hey everyone,

So last night Edith and I did my video. It’s totally epic!

The link is below. Please share with everyone that might be interested. Would love feedback and to connect with others interested and passionate about ASL

Sorry about the blurry webcam. The webcam on this computer is a whole lot better. The first time we skyped with Robbie on it it felt like we were in the same room. But considering the screen isn’t usable that wasn’t an option. Maybe for the next video whenever that is.

This is the first time I’ve showed anyone besides Edith Jess and Robbie these signs. And like I said I would have wanted to do this like a year later. But hopefully we will. Among a whole lot of other things obviously Edith said she was willing to help me convince Krystal that signing is therapeutic and that she might consider trying on the weekends she works as weekends are usually pretty quiet.

Plus Mr. J and I have found a few really good options for ASL fluent caseworkers so hopefully one will come our way soon.

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making my super awesome hopefully ASL video tomorrow!


So fun times tomorrow. Edith and I are making the long awaited but I know not as good as I wish it could be ASL video. Why it won’t be as good as I want it to be is I wanted to make the video like a year from now. By which point I’d know a bunch of words and Edith and I would know how to tactile sign back and forth. How we’ve been doing it is one sign at a time that she verbally and physically walks me through. I’ve signed things to her but haven’t actually had her sign back like an actual conversation. Was gonna have her talk with someone like on e-mail or Robbie to learn more about that. Though I know it should be simple just put her hands on my hands. But since she’s just learning sign in the first place I guess it’s not that simple.

I know some say that she never should have been teaching me because she’s not a native signer or other signing type teacher. But let me tell you it’s one of the most fun things I’ve done lately. And I’m so happy to be learning at least something. Everytime I try to sign and Kat says I’m so smart (to Jess who interprets) it soo warms my heart. Every time I learn something I think about hopefully one day meeting my very cool online ASL speaking friends. Or just being able to sign with Robbie for fun, or maybe Kat though she’s so impatient and can’t sit still to save her life so tactile wouldn’t come easy to her at all. With what little I’ve learned and just a deeper intuitive connection between us I feel we are communicating a lot better. Plus texting. Though she doesn’t get it that she has to delete her text messages at some point or else she can’t get texts. And then she thinks I’m not texting her on purpose. That’s low tech Kat for you. In our meeting she walked by bugging Jonathan for another pop though he gave her one twenty minutes before. I told him to tell her to delete her text messages so she could get my texts. Well I’m assuming that sentence didn’t come out very good because he told me she wanted to come teach him
“how to sign” right then and me too. I’m like you know how to sign! (didn’t mention that he said he never saw the signs in Nai’s video ever before LOL) he said she’s teaching him to sign faster. So yeah.

But anyway the other problem besides wanting to have learned more is we haven’t practiced since my birthday. And of course to the very last day Edith’s like you could have gone to DBT for a couple more weeks! I’m like LOL at this point. I try to practice by myself and often that works out well. But it’s hard if I practice the wrong thing and no one knows how to really help. But anyway we’ll do a small practice session tomorrow and then the video. Showing that I can do the alphabet (pretty good except I have problems with c, o and can’t do z at all). Which would be fine but my mom’s name is Liz and I call Jess Kinzy. Edith says I should write liz with an s like in England LOL don’t even think that’s accurate. Again I was hoping over months and months we’d be able to practice “my mom’s name is Liz” and in the rhythm of that sentence maybe I could get the z to stick. It’s like OMG who wants to learn to draw print letters in the air when you’re blind? To me that’s one of the actual hard things. If I can’t shape my hand right or just can’t get a movement right.

But learning overall is not as hard as people who hear Edith is/ was teaching me think. So far the reaction has been “that’s really difficult/ you have more patience than I ever could.” When really I know I picked up a lot fast and remembered a lot. And had a good time even when it was hard. I wish people wouldn’t just write it off.

So yeah I’ll be soo excited when we do it though! Sammy squeal!!

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finally can relax a little

So meeting with Jonathan is always so helpful. He’s able to really help me solve issues or take care of stuff and it’s just so great. After this week I really needed a long meeting. So we met for like an hour and a half.

The one thing that’s been keeping me sane this week has been sorting through resumes. Used a site called to put the word out there about the PRSC job. We have two new people coming in but then Edith is leaving. Anyway that site is awesome! Have gotten some great applicants including two things we really need. Guys and people that speak ASL. I think we even have a guy that speaks ASL lol!

So I’ve been happily sorting into a “absolutely yes” “maybe if needed” and “no” folders within a PRSC application folder. Put it on my thumb drive and Jonathan was so impressed. Gave me more tips for weeding out applicants. I should work in human resources LOL!

Left my thumb drive in his computer. That’s ok he’s in tomorrow.

Then discussed the laptop. I’m really happy he simplifies problems. My mom was driving me nuts with all the options we could use and what we should do and not being able to find the paperwork or anything. Well Jonathan said there’s no reason to be that anxious about having it sent out to HP. That no matter what protection plan you have the first year you send it out to HP. He’s sent out a bunch of computers and never had problems. He’s getting the box today and we’ll send it Monday. It’s only in indianna we found out! So that was a huge load off my mind.

Then we talked about Edith leaving and Krystal in general. How he said things will probably be good or neutral with her but not very bad. That it will take time with any new PRC for me to trust and for them to know me. That things would eventually go well but it could take awhile or it could be fine right away. He said the strength I’ve gained from working with edith will help me through the transition.

We are also getting three new people basically. So if krystal doesn’t work out I could work with them, or hey here’s a thought get to know other PRCS just so I have other people I feel comfortable with! We talked about how as he put it the “positive side of me cutting” (only this guy would say that) was that all the PRCS knew me and like it or not I had to spend time with them. I was always on one to one and just everyone knew what was going on. I was like the facility star for six months LOL!

So it was a really good meeting. We talked about my anxiety and my tendency to play the “what if” game. He said if you look at the things I know for sure, like Edith is leaving, my computer is being sent out, Jess has heart issues. That’s enough. He said if I wanted to add an “what if” on top of it I had to find one solution to it as I would with stuff I know is happening. If I can’t find one or don’t want to find one I can’t be worrying about it! I shouldn’t have told Jess this because she’s used it on me like four times tonight.

But anyway I do feel a bit better like I can finally go back to low key Sammy mode. Saving the world online like Jonathan says, reading audio books and just normal Sam stuff and not constantly unable to focus and totally exhausted. Having time of the month issues and a cold the past couple days did not help. As well as everything this past week. It’s felt so long.

I told Jonathan I’m exhausted and he’s like you’re gonna keep being exhausted through this transition. I’m like great thank you!

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short initial meeting with Krystal

So part two. After getting meds I decided to just swing by her office which is on my floor. Technically she was supposed to come see me. But I think totally forgot because she was a bit sure you can come in but not sure why. I was a bit worried when she said that I’d only be her resident until they got the new person that is taking most of Edith’s cases. I said that Edith and I had actually hand picked her for now. Which I’m sure Edith told her. She seemed to accept this. I anxiously told her about how hard this is for me to open up and trust any PRC besides Edith. That I actually know nothing about others. She listened. She never interrupted just let me talk. It was nice. I could tell she had her full attention on me though sometimes she didn’t give a response to something I wish she would have. I remembered though that often people have to modify their communication style towards being more verbal if their strength is nonverbal facial expressions. I figured this was what was going on.

I told her I had a degree in counseling. Which surprised her as it does all staff as well I live here. She said that she grew up with a blind aunt who cooked cleaned ironed walked the dog. I got nervous worried she’d compare me to her as does happen with people with disabilities. If someone meets one they think they’ve met them all. Still it’s nice she has some knowledge of the blind and that I’m not the first blind person she’s met. Not that that’s something I’m worried about.

She genuinely said that she’ll try to continue with the schedule activities and ways of working that Edith and I have and that she won’t be exactly like Edith but she would try. I felt she was genuine in this. And I heard and felt a solid intensity behind her words that I often feel from Edith like this really did matter to her.

We tentatively set up a schedule of meetings. She totally understood about my issues with meeting in an office with people knocking on the door constantly and with other people there. Which was good. Is open to meeting with Edith and I tomorrow. I felt good about it. It was a good initial meeting. The test will be when I come to her with raw emotions or am withdrawn. Or when we have an argument how she reacts to this. How she reacts to all my symptoms and what her responses are and what I sense her true feelings might be underlying them is there’s a disconnect. But it’s positive. At least she wasn’t condescending or brushed me off or tried to tell me how I should feel. Which are real triggers for me. It makes me feel like five percent better about things.

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very hard day

Hi everyone,

Today has been a very hard day and I think I’m finally settling down.

So I woke up with my period in full gear which was hard as it started out like it wouldn’t be so bad this month. Always full of surprises. Then I had a sore throat and it felt like I was really getting a cold which Jess also has.

A huge stress for me is those computer issues. All the info we had to go on as of this morning was that Jonathan had called them they said we needed to use the HP warantie first before any other one which we had bought. And that it needed to be sent out. I heard the being sent out part second hand from Edith as I hadn’t gotten a chance to directly talk to Jonathan since Monday.

I’m very anxious about sending it out. When I had my last HP computer it was actually good for years. At that time I really wasn’t using the internet as much as I was towards the end and it got a virus that it never bounced back from. I put it in the hands of commission for the blind and Staples, two different ones and everyone made mistakes. It was on it’s way out anyway but still.

Plus we searched online and can’t even find where the repair place is located. It did say that best buys in the area had service centers specific for HP. But I’m guessing they need to send it to manufactor and can’t do it in store. I wish they could.

Anyway so finally this afternoon I talked with my mom. Well turns out we didn’t buy at Staples she bought it online from Amazon. She sadly can’t find the info on this though I would hope it’s somewhere. Her computer died and though she claims she “knows everything about computers” Robbie can tell you she’s quite a mess in that department! A controlling scattered mess. Anyway so she went on repeating herself six million times about how she couldn’t find any info in her staples files, because she didn’t buy from there. Also since she said the computer had been sent directly here we must have the paperwork. As she spent the past week saying she had it we hadn’t started looking we will. When Edith comes in and Jess and I aren’t so burnt out. So we had this circular conversation about all this and got nowhere. She wasn’t getting it that this is a physical hardware issue due to cracks on the actuall inner screen not the glass outside part. She was saying the problem was I had windows seven, and I can’t use that anymore because there’s no support for that. I had to say three times it’s not a software issue. Then she was saying that since she bought the computer she should be the one to call HP not Jonathan who is our techy wizard and was just trying to help. As in the beginning of this whole thing we thought she couldn’t handle the stress. She’s back to her old normal high stress self. But anyway. She then said that if I didn’t want to send it out I should send it back home and she’d take the computer to Staples, which is not an HP servicing store and that for sure they’d fix it. And if they couldn’t I’d get a whole new computer. Which is so stupid what’s so hard bout removing and putting in a new screen? So I was frustrating and crying and just ugh. This is so simple really. But it’s getting so complicated. My mom always makes things ten times more complicated. Plus I had zero energy from how bad I was feeling. Eventually came to the understanding that we would all look for paperwork and somehow try to see exactly where it would be shipped to and if in fact they can actually fix the screen. Sometimes these people get your computer and do a bunch of stuff just to get more money and often can mess things up. So anyway that was draining.

Then Jess was having some heart issues this afternoon. Made me really glad we’re in a nursing facility. As they had stuff to monitor. The new meds did help a lot. There’s the chaos about trying to find out when appointments will be for tests and people having no idea when they should no and just not caring. By people I mean nurses. So that’s annoying.

I was anxious/ depressed over Edith leaving stuff. How would I begin to trust Krystal. Did I even want to try?

So yeah that was hard. I did feel better after my bath. And meds. I got ativan in me and already feel it’s helping. I did too have a short meeting with Krystal which will be up next.

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So happy Jess is coming home!

So happy Jess will be home tonight like soon.

We’re gonna order out and just zone. I am worried as she does have some new diagnosis of heart issues. If anyone has medical or personal knowledge of this I’d appreciate it.

What she has is Atrial FibrillationSomething about an off heart rhythm. She has to change her blood pressure meds.

She is having a few outpatient appointments including a sleep study for sleep apnia which I have heard of. It’s when you stop breathing in your sleep. But know people that have it. They have to wear an uncomfortable mask.

I’ll hopefully be able to go to appointments with her so she doesn’t have to go with stupid escorts who don’t want to work here.

So yeah happy to have her back.

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Edith is leaving

Hi everyone,

So I have some really sad news. Edith is leaving. The day has come. Well a week from Friday so it’s fast approaching.

I found out on Sunday. She found out about the new job on Friday late in the afternoon. I was really shocked. I know she’s been here two years so it was getting time but in the past she’s said she wouldn’t leave until she got into grad school. But this job came up working with developmental disabilities and it’s just right for her.

I am genuinely one hundred percent happy for her. She has done an amazing job working with all of us and the other staff. She’s earned her place at least in most residents eyes as one of the four or five core PRCS that we can depend on. She is extremely patient and compassionate. Creative, flexible and able to truly learn and change from interacting with each resident.

She’s been the absolute best caseworker I’ve had. I’ve grown so much with her and done so well with her providing such stability and openness to just letting me be myself. At first I was shocked and didn’t cry. We went over practical stuff. I wanted to know about the job of course. She had wanted to tell me later in order to just let me talk about my feelings but I said knowing would help and it did. We went over options for a new person. Ruled out almost everyone for various reasons. The choices just aren’t that good for someone for me at the moment. Many have pretty full plates with residents where I wouldn’t be a good fit. The two guys are so laid back they’re hardly here. Krystal we finally settled on. She’s been here a year. That does make me nervous and I plan to ask about any plans to leave. She’s very patient and Edith says I’d be a good choice for her caseload for now.

Just as recently as yesterday she heard about the new PRCS coming in. One Stephanie is supposed to be really good. Master’s level going for her license. So that will be at least two years. I’m hesitant to transition to a brand new person especially without Edith around to help. Krystal and Edith have worked side by side for a long time. But it’s good to know there are other options.

We’ve talked about stuff I want to do before she leaves. She says I can have her e-mail though she may not respond which is fair. We’re gonna do the signing video showing off what little ASL I have learned. I know through that experience in spite of our disagreement about the whole group part she’s genuinely appreciating ASL now and that it can be learned and how important it is. If I can help someone figure that out I’m very happy.

As crazy as my parents might be they’ve had great conversations with Edith and know how much she means to me. So they want to say goodbye. I just hope we can spend the next week or so together as often as she can see me and just really enjoy every minute. I get really sad when I think about all the stuff she won’t be able to experience with me. My long awaited visit home or if my parents ever come out here. My changing and developing relationships with new friends and if I ever visit them. New ups and downs for me. And just being her supportive self in my life.

I don’t want to take this too hard and have it make me unstable. I know the reason I am so stable is a combination of meds and the support I know I have here. Some of that comes from Jess and Kat. Most comes from the general sense of security of the place (not having to worry about things like getting food meds ETC) and the staff. Most especially Jonathan and Edith. Hugely Edith. I worry what will happen when she’s not here. I want to be the type of person who can just move on from this. Tried to tell my mom that there’s a possibility that I may to have my meds raised or even go inpatient depending on how things go. I’ve always had that in the back of my mind. To the point Jonathan told Edith on Friday that if I felt I needed to go to the hospital after I was told she should let me.

For the record he’s very proud of me for how I’m doing. We talked a lot when I actually stepped out of the building to find him outside about how problem solving helps me with my emotions. Which is so true. And how though he wouldn’t wish it, the timing of the computer screen breaking was perfect as it gave another problem to solve.

I worry what I’ll be like when I’m done problem solving. I want to keep doing well so he’ll still be proud of me I don’t want to mess up. I know he’s not pressuring me at all and said I’ll probably go through a lot of emotions but still.

So anyway that’s the big news everyone. Had to wait til she started telling other residents/ staff. I was the first to know after Jonathan and his office crew. Which is what she promised. If she left I’d be the first to know. She’s never broken a promise to me or lied.

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