good day

Today was good. Robbie and I spent some time with him fixing the add blocker thing and doing stuff with NVDA.

So things seem up to par on my computer finally!

Spent the day literally on youtube listening to people in musical theater master classes getting coached. Reminds me of the good old days of Indian hill and voice recitals, workshops and connecting with fellow students.

Other than that not that much. Tomorrow Jess sees her therapist instead of Tuesday because she is having her hopefully, last sleep study that night. Haven’t been away from her for an overnight in like a year. Will miss her. So will our babies very much. Baby girl carebear does a lot of purse travel and so will join her. I’m in charge of a couple of sad and anxious kids.

So we’ll see. I’m sure I won’t be as lonely as I feel I will be. Jess says it’s good for us to get a break from each other for a night which I guess makes sense.

The rest of the week not sure what will happen. Will be seeing Shamaya for our first session tomorrow at two thirty. I have my annual careplan Wednesday which is always interesting. Five minutes of staff saying everything is good. I did write up and send to everyone, Anna, Jonathan and her about next year and Jess and I planning on moving. So wonder what staff’s reactions will be if it’s brought up at all. These meetings are by no means in depth. They have one floor to go through on what ever careplan day they have, five is Wednesday. So it’s kind of rushed.

And I hope there’s food. Last time they had cake I think!

Found out today from another resident that Jonathan took 30 people to Ihop on thanksgiving! This is the first resident centered thing I’ve seen him do in a long time. It would have felt good for him to offer. To reach out in at least that small way. I wonder if he’s avoiding me purposely. With no communication at all it’s hard to tell.


Awesome day: unexpected visitors!

So today turned out to be amazing!

Started out normal. Took long nap. Did not want to go to lunch but got up at a reasonable time. I’m really happy to finally be able to use the internet well again as I haven’t been to for a few weeks. Especially about my volunteering. I was glad to do some of that again.

In the late afternoon Jess and I were just hanging out. Russell who works at the front desk called us down. Jess thought we had mail, a letter from Kat.

I thought maybe Jonathan was making an appearance and actually for whatever now to me shocking, reason, wanting to talk to us. Well we didn’t get a letter from Kat. We got Kat herself! All squealing hugging sweet smelling Kat. Just like I remember her!

Keep in mind I don’t think either of us thought we’d see each other again after her hospitalization. I knew I wasn’t sure I would. She had left me a message last night. Not sure if she had said she’d be coming as didn’t check my voicemail, still, yeah I’m bad at that! But it was soo awesome to be in her energetic presence again.

Along wwith Kat came Stella, a good friend of hers who’s also deaf, and her two kids Emma nine, and an eleven year old girl I forget her name. She was our interpreter.

We went into the hot and small commissary. I soon wasn’t thinking about the heat. I got a reminder about how hard it is for us talking in person. I tried signing the signs I do know in response to stuff or in conversation (nice to meet you, yes, no , good, friend, thank you, ILY, good afternoon). Well the only two anyone apparently saw were the last two. Everything else was signed to my lap/ to the imaginary people under the table! I have a really bad habbit of signing to my lap. And with everyone at a table even if signig at a correct hight/ facing th people unless our hands are constantly touching it would be imposible for me to be sure if they got the message.

Kat often holds my hands and puts them to her face or head. I wish we had someone wwho could really sit with us and teach tactile sign. Like wish I could transport Nai fromDC.

But with a combination of Jess and her riting, and the girl interpreting and just being with them all we made it work.

They could only stay about ten minutes. She can go out a few hours a day now. They went to church and a walk and I guess they were literally in the area. We may go out for pizza next month. Maybe I’ll learn the sign for pizza LOL! I guess I got good afternoon right. And we signed ILY holding our hands near each other.

It was such a relief to see her doing well in spite of being in the hospital so long. Like it’s been a year! Maybe a little leess. I know she left in the beginning of December rright wwhen Jess had heer last hospitalization.

Going out must be amazing for her. And Stella seemd nice. I I could sense a nice atmosphere between she and her kids. It’ll be interesting to hopefully get to know them more.

In other news, Anna’s last day was in fact today. She finished up her notes and seemed very ready to go. Wasn’t sure when she’d be coming though wrote her earlier. I thought we’d have an actual last meeting. Where we could like talk and sum up our work. But she gave us a hug and candy cane each and she was out. She said Shamaya could text her. Though I doubt that would do anything.

I did write an e-mail to her, shamaya and Jonathan about oour plans for next year emphasizing the importance of his help in things.

So it wwas a good but long day.


yummylicious and productive day!

Today was awesome! Just what we needed after this week.

Got my check today so paid rent. Then Jess went out to get some snacks. Got several packages of goldfish that were on sale, and smarties for me and Hershey bar for her. Then she went to dunkin doughnuts. Got sandwiches got the wrong one for me but it was still yummylicious, and an awesome large smoothie for me and milkshake for her! And chocolate chip cookies.

We seriously haven’t had a good meal since thanksgiving! So it was awesome and well deserved.

I finally got to work with Robbie on the computer. Firefox has been so screwy and he did some trick putting a version in that is the same as before the update but of course I wasn’t gonna leave that to me. I’m really not techy unless you give me step by step instructions. We first had to get NVDA remote going so he could “take over my screne as my mom puts it when we call tech support.” Well that wasn’t easy as whatever add on I had in there was not working and took forever to uninstall it/ nvda eventually, and then somehow when in a break in all this and seeing the install file for firefox, I installed that but going online hit some page that was saying Microsoft detected I had a terrible virus that was already sending my info to hackers. It demanded I call a number or my computer would be disabled. I just sat there for ten minutes with it reading out, it wasn’t even nvda reading it it had its own audio! And then Robbie was like get off that site now!

I did and nothing was hacked thank goodness. I totally woulda sat on that page til Jess came home and then had her call the number and then who knows where that would lead. Knowing these crazy viruses they can probably get information off your phone when you call it. What scared me the most was knowing Robbie has limits he didn’t have before as a total, and we don’t have Jonathan to bail us out like at all. There’s one resident on the floor that seems smart with some things, he helps run the resident token store but not sure how he is with computers. Obveously I wouldn’t let just anyone touch my computer. But knowing we have less people to help is scary.

Anyway so finally! At like four, and we started at one, got the nvda remote thing going! Now he not only had to make sure firefox was in right but to check that there wasn’t any virus. There wasn’t at least not that I know of. Jess will do some scans soon just to be sure. He put in this add blocker thing but now it won’t let me go on fb because of all the adds so guess it’s too good LOL!

And then so like he was done and he said restart so I did and then for whatever reason NVDA was like totally gone so I installed it again and the voice totally sounds like it has laryngitis! It’s so scratchy and totally wacked out!

Anyway it was exciting and productive and I was more focused than I have been in awhile. Had to be to do tech. Except like I said I’m so not the best. I deleted some folder and he’s like you’re not supposed to do that! It’s so weird this voice thing.

Anyway like I said good Friday to round out a really bad week. Talked to Mary my favorite c.n.a and she said she actually talked Natalie into taking this job as she said that’s really what she wants to do. And she thought Natalie was nice. I totally trust and love Mary so I just said that if I have problems with her I’m blaming Mary! Jess remembers some other time she was on the floor and ok besides the time I talked about in my previous post but I don’t. We shal see!

Poor Shamaya didn’t get a chance to see me due to the crazy PRC happenings. I love surprising these people by calling the front desk on my cell! She was cool with it. I’ll see her Monday afternoon and Anna will see me tomorrow and we’ll all collaborate on yearly careplan which will be Wednesday. It needs to be the new and improved SMHRF version so we’ll see what that looks like. Not sure if I should put in wanting to move for the next three months. Probably that is what I’m looking into so best not to spring it on them. Just good luck to us getting Jonathan out of the woodwork or space or wherever he is now to get his support for the actual move, particularly in convincing/ reassuring staff at other places that I’m a cool blindy and not a liability!

So we’ll see. Anyway not much going on this weekend. Just chillaxing. I can’t believe today is the first of December.


The past few days here have been hard on everyone at Albany

So the past few days have been hard ones.

Don’t know if it’s the weather or air currents or something but there have just been tons of codes! Code green in particular which is medical. One thing is this guy who’s pretty out of it in general has balance problems and keeps falling. That’s happened like three or four times.

One of them the not too bright c.n.a called code blue instead of green. Blue usually means the person isn’t breathing! It’s like calling 911 within the facility. Everyone was up here in like ten seconds. And pretty flustered when they found out that the person was breathing and it shoulda been a green.

Later I asked one of the nursing office staff if they were mad at the woman for miss calling the code. She said no because it got people up here faster. So that’s always hard.

Then today at a social there was a true code blue and so ambulance was called.

Then there were psych hospitalizations going on in the midst of everything. When there’s a lot of intense activity around here in general it affects the whole energy of the place. Everyone is more on edge than usual. And usual is pretty on edge.

Personally saw Anna a couple days ago. The meeting itself wasn’t earth shattering. But I found out who the new PRC is.

This former CAN named Natalie. Not sure if I blogged about this when it happened. They have “agency CNAS” so people that just go to different facilities rather than sticking to one. Just fill ins basically. Well she was on our floor one day. And I’m fast asleep in morning nap land. Jess was likely also resting. She pounds the door. I do my startled scream, Jess says her loud and irritated “Whaatt!”

She comes in and says something like “excuse me. Don’t say what. I’m not a resident I’m a staff looking out for you. Have some respect.”

Basically telling us to cut the attitude and talk nicely when she has not acted or talked nicely so far.

I say that I was startled when I’m loud startled sounds come out of my mouth. Jess said that her “what!” is standard and she just doesn’t think about it but is working on her tone in general. She said that she heard two “whats” even though I said I only screamed. Turning on her heel she said “got good hearing I do.”

Well we were incredibly flustered to say the least. I have no patience for condescending people especially in this line of work. This is not school. Having people quietly line up say please and thank you all the time and never raise their voice just aren’t realistic expectations for many here. Yes most of that in some way are good things to work towards but you have to start with the insight that people here are emotionally in a rough vulnerable place. Learning to deal with emotions, and symptoms that can make them flood at a moment’s notice is the goal. Staff modeling this and approaching situations in a calm, if not positive, neutral way is key. Because situations can spiral so quickly otherwise because everyone is at high energy with what’s going on ready to just go off at a moment’s notice.

So there’s that. Then there’s the whole show respect while I’m in your face not listening and being a bitch anyway. But it’s of course ok for me to be a bitch, because I’m higher up than you. I go home every day you don’t. You have mental illness you’re crazy. I’m not, you do what I say even if how I say it is totally contradictory.

She said all that in more in that short interaction.

I further witnessed this kind of controlling bossy behavior in the dining room, another place where tentions run high. She even treated other staff this way.

I haven’t seen her since and was extremely relieved. This place has run pretty smoothly.Between Jonathan, and Karen they really do try to hire people that fit within the respect the person at all times, see them first before their illness kind of thing. To have someone so aggressive in the mix was unsettling.

Well come to find out apparently she saw a PRC opening and decided to apply. Ugh! If you knew how many candidates come forward when you put out an add that are so awesome, you’d wonder why she was picked. I have a feeling Monica was running that show in which caseoverly clinical and condescending are right up her alley.

So I have the pleasure of an anxiety episode the minute I’m in her presence. I have a great chance for my PTSD to flare up around someone like that having that kind of power over others or thinking they do, and of watching her hurt others and feeling that hurt myself. All the stuff that I’ve worked so hard in therapy with Jonathan on. But the thing about PTSD is it’s imprinted neurologically. So if you’re not constantly, or at least fairly constantly, working on it it gets retriggered. If I were working with Jonathan I could say the situation. Express all the pent up emotion around it and probably talk about how it connects with my past. He’d give another perspective gently in a way I could hear and some progress could be made. I don’t have that. I just have to “get on with it” as the british foster carers I read would say.

So that’s a huge thing for me! Unexpected and totally overwhelming.

Then there’s Shamaya. Will be seeing her tomorrow at two. She better remember and I better remember not to be napping. With everything going on I’ve had lots of naps. Often I need it because I get so anxious so quickly.

Things have been hard on Jess too. Also feeling the strain of the environment. Though thank goodness she has that breath of fresh air as an outside therapist for support. And that’s all hard because I feel like I’m leaning on her so much with everything emotional because I feel like I don’t have any other support in this facility that’s the quality and level that I got from Jonathan, and Edith. Just haven’t had a PRC since, and don’t know of one that was so good as Edith. So I’m just kinda floating around trying to make the best of it.

If I try to get a new therapist odds are it will be a poor match. And that will stir up more anxiety and depression that’s trauma based. And if they’re not trauma informed it’s just more chaos.

So hoping next week will be much better. Jess will finally have her sleep study. I have my annual care plan. And yeah just hoping for the best.


quiet day

Hi everyone,

Today has been quiet. My period is still deciding about vacation so decided to visit this month after all! Well at least as it’s so close to the end of the month now hopefully it will not come til beginning of January which would be a nice Christmas present.

So of course took two very long naps and lots of Tylenol. Listened to audio books. Played with Lexie and Freya.

Had lunch but not dinner. Had graham crackers and cookies.

I did request some books for bookshare which is good. Just wish getting stuff in narrated audio were that easy!

I’m so tired of hounding Harper colins about the first eight Casey books!But I’m determined to at least find out what the answer is on the total resistance to the idea.

Other than that am doing ok. As the days get closer am more and more sad about Anna leaving, if only for the consistency she provided in genuinely trying to connect each week. I’m also anxious about connecting with Shamaya though not very. I’ve done this so many times with new prcs. But this w will be the first Prc transition not having Jonathan supporting us through it.

Talked to Bobbie again this afternoon. She nailed it when she said Jonathan is only here in body and that’s if he’s here at all. She said he’s not the Jonathan she knew all these years. And again said what she’s heard about him running the whole place.

My first Shamaya project will go through all the crud in storage and thinning things out ready to prepare for touring and moving.


Posible side-effects of raised lamyctol dose: late period and bad smell/ sweating a lot

Over the past few weeks I have gotten great results from that 50 MG raise. I knew I would. All my psych meds, with the exception of welbutrin work well with my brain chemistry. And I have good tolerance, II I don’t need to raise doses often.

I do actually agree with Dr. Patel that I need therapy and I strongly suspect that if Jonathan hadn’t just disappeared I would not need a med change!

Anyway another plus for me and meds is that I usually don’t experience too many side-effects

In 2015 I think it was Dr. Fyazz increased my lamyctol. And my period went wheever they go on vacation for six months!My mom was super worried, I was just anxious because she was. Then there was the stupid gyno stuff wwhich by the time that started period returned very refreshed!

My period has been late this month. I get cramps and feel like I’m bleeding but the pad is dry.

Not gonna tell anyone about this unless blood shoots outa me lol!

I know what to expect this time around and am sure it will settle back down.

Second strange thing never seen before. When waking up from naps and sleeping I’m very sweaty. And there’s a strange smell. Not like BO sweat, but sharp and kinda sweet. I’ve tried to trace the smell to something I can relate to. Eventually remembered a time when Simon brought Mom some mouse for breakfast! My room and her room are joined. I guess she didn’t want to wake me up or something, plus she hates mice, so she just left it. I smelled

That same smell while on the computer. Since Mom was out I got Gramma. She came in and said it smelled like Grampa LOL!

Then she saw the mouse. Is not scared of them at all and just cleaned!

So I call it the dead mouse smell!

Of course did research on this and Lamyctol. People have reported it and say it’s rare. Some say the smell smells of pee but I don’t think so.

Guess will just take a bit for all this to go away. I’m not at all put off, this med has been a huge player as all my meds have, in putting me back together. The benefits in even a short time are worth a period that deserves a rest and my bed smelling like a dead mouse! Though what’s weird is Jess can’t smell it. Have not asked anyone else to smell me I save that stuff for my big sis!

Would love to hear about anyon with experiences with Lamyctol and these side effcts


pictures and videos from tthanksgiving

Hi everyone,

Below are the pictures and videos from the other day.

The internet is driving me crazy! They updated firefox a few days ago and no it’s super slow and useless!

So it took forever to upload these very short videos so you better watch them LOL!

Thanksgiving first plate

(There were two other plates but we didn’t record that!)

Zoneing out after thanksgiving dinner

pumpkin pie

Now the pictures.Rather than post individual links which the way things are going would take all nighi’m just linking to my public part of fb and it’s the first post.

Ok think I actually got the link itself.

Also just realized I sent the mobile site link. I know some people can’t access that version or just hate the look of it. It’s the only one I can easily access. The regular site is a nightmare for screen readers on a good day I don’t want to think about how insane it is now

Ok. This little post took like half an hour when should take ten minutes. On top of everything keyboard was acting up badly! I think it’s off the computer for me verysoon.


A yuummylicious but very tiring thanksgiving!

Hey everyone,

Was so stuffed and tired when we got home I couldn’t even go on the computer. But it was a good kinda tired.

So first of all sadly the old country buffet that we’ve gone to the past few years closed. It was about a half hour away. Once coming back we had a lot of stops which made a long trip but distance wise it wasn’t a problem.

This place! Was like an hour away. The paratransit computer kept trying to say it was outside Chicago. They fixed that but I can see why. It took like an hour. The ride out we actually got to ride in a taxi. I guess all the paratransit vans were taken. Same price just nicer car.

So it was yummylicious as ever! Lately I barely eat two meals here because why go down there if I’m not gonna eat? So I made up for it yesterday! I had three huge plates of food. Turkey and cranberry sauce twice, Mashed potatos (was soo happy to have them because I normally love mashed potatos but albany’s are too gross!) Macaroni and cheese, dressing thati didn’t like and yams! And I had pumpkin pie and ice cream.

Keep in mind we we were there for several hours so Jess spread the food out to try to have me digest. I still ate wicked fast like I always do. I always go out to dinner really wanting dessert! But then I’m so full from my meals. Kinda wish I had gotten a bunch of dessert first because there was a lot of different stuff.But I got my pumpkin pie so that’s all that matters!

By the last hour wwe were both were totally stuffed. I wished there was a bed in the restaurant I could lay on! So I just leaned on Jess for an hour LOL!

Then the ride home. This driver decided to take what I guess he thought was the backroads. Instead of the highway we got all these uneven roads I think we hit every bump across Chicago! This didn’t help our stomachs or just being totally exhausted.

We didn’t get home til five. Had been planning to skype with family but was literally too tired to think!

Took a nice bath took five pm meds. Slept took nine PM meds at like seven. Jess and I talked for a little while and then she was out. I listened to my player awhile thought about everything under the sun but probably went to sleep early for the fact I had just slept two hours and I know I slept all night. Then for my nap slept til 12.

I think my body is still really happy to have gotten actual food yesterday and not crap from here or snacks.

So was really good. We’ll decide next year if the ride out is worth it or if there’s some other buffett restaurant or other restaurant that does a thanksgiving dinner. It was like $30 for both of us for all that food. Pictures and videos will be in another post.


Book Review: Living with Multiple Personalities: The Christine Ducommun story

I just finished reading a heartfelt and relatable memoir around a wife and mother’s healing around sexual abuse and embracing of her alters and the diagnosis of DID.

All Christine wants is to be a good Christian mother and wife and a support to those in her community. For many many years in spite of her post traumatic stress disorder, problems with her marriage to an alcoholic, her own alcoholism, and other traumas that would knock anyone down she upholds this image. Beyond the very organized, homemaking, bill paying, organized mom and devoted wife is someone who has panic attacks and night terrors. Things start to unravel when she and her husband Rick move into her childhood home. They both work very hard to rebuild and redesign things but there are certain places in the home/ yard she can’t go without severe physical pain and anxiety.

She tries to brush this unde the rug and concentrate on her family. She and Rick can’t physically have children. So they adopt. One of the boys she has has FASD fetal alcohol syndrome and ADHD. So he has special needs wwhich Christene seems to manage wwell.

Things become unbearable with the emotional pain and she finds a therapist as spiritual avenues weren’t helping and she needed more than meds which she had a high tolerance for. She met Lanett who dealt with issues of women who have been sexually abused. It came to light in therapy that the night terrors and flashes of memory were instances of her father abusing herself and others.

Christene really liked Lanett and she worked well in therapy using journaling, a workbook on sexual abuse, and going to a support group. Still things weren’t quite right and there were times she couldn’t remember her sessions.

One day Lanett told her that she thought her issues weren’t just around PTSD and having very complex inner children. That she was manifesting several alters. Christene seemed to accept this diagnosis really easily. As a part of her is a take charge determined person who resolves to get any problem solved quickly and with full engagement. She researched DID and Lanett did play therapy with her child alters. As the therapy progressed and Christene acknowledged the child alters and their memoires they naturally integrated.

Lanett was very unsure about having a client with DID. But Christine was very determined to keep Lanett as a therapist. She would take breaks from therapy when needed as talking and connecting with the therapist and each other was very hard on the six other alters.

These six alters (Kris the caretaker, Christine the composed no nonsense organizer, Sally the sexual teenager, John who demanded respect, and Elizabeth the keeper of the memories of the system) became what Christine called her “board of Directors.”

For many years the board was not a cohesive group at all but a free for all as each alter demanded attention in therapy and Christine’s life and seem to overrun everything with their own needs and ways of life. Lanett meanwhile was receiving consultation from a therapist skilled in DID who eventually, after Lanett retired became Christine’s therapist.

I wish that more of the actual therapy sessions were portrayed. It seems like there was a lot of the therapist talking with individual alters. They had problems with one of the more responsible alters saying they’d get Christene home and then another alter would take over and land them in all kinds of trouble.

I won’t give away all that happened but the directors of her board put everyone through crime, addiction treatment, and having sex with the husband that everyone else in the system was in the process of divorcing.

The turning point for everyone was when they all worked together so that they could leave the abusive marriage with Rick. On their own they struggled, but came into their own identity as individuals and were able to work towards the group as a whole in building a positive life. As they did this they naturally integrated. The decision for Kris to change the body’s name to Christine symbolized that.

The story gives a lot of hope to anyone who has suffered complex trauma whether they have DID or not. It also clearly shows whart life with DID is like and one path towards healing.


4 year anniversary of moving to Albany Care and good meeting with Shamaya

Hi everyone,

So day before thanksgiving! Also known as the anniversary of moving here. Can’t believe it was four years! I won’t go over the whole thing of how I got here and how Albany Care changed my life for the better and my plans for the future because I did all that in the post about my breakdown a week or so ago.

I will say that my progress was pretty well summed up in my intro meeting with Shamaya. She was supposed to come at four. But Jonathan of course sent a last minute text that the PRCS have their (first if you can believe that!) SMHRF training this afternoon. So Anna just brought Shamaya by around threeish? I don’t know.

Other than feeling a bit caught off guard I soon settled into my million mile an hour chatter about my life. Shamaya strikes me as an older black woman with a calm attentive manner. She listened to everything I had to say with Anna qualifying some things. She said I have a lot of insight about my life and my future and that she’s very eager to work with me. She’s absolutely fine about coming to our room.

I just basically told her how our meetings usually go a once a week forty minute or so check in. And told her about how things are going generally.

One thing we talked about that surprised even Anna though Jess and I had been considering it for awhile, is as much as we love our cool code operated doorknob we think it’s time to branch out and see how we do with a lock and key! No keys was part of our self-harm plan. But Jess never used keys anyway. And I haven’t scratched at all since 2015 here. As we’re thinking about looking into another SMHRF I want to have to have as few accomidations going into it as possible/ things they might say no over. I don’t think they’d be as impressed with the doorknob as we are.

Plus when we move to a real apartment we’ll need a key. So Shamaya/ Anna will talk with Jonathan about this. Who knows he might make an appearance to discuss it though with him who knows?

I found out that she’s actually a therapist when she’s not working here! Not sure how she can run a private practice part time and do this job. I hope that system doesn’t fail her in a few months. I said as much. She said she wouldn’t but you never know. She has a pretty full caseload and when things really get going people get a sense of how big the job is. Not that things haven’t been full on there was so much paging and ashe’s dealt with code yellows and stuff.

So yeah anyway. So I asked her about her practice. She does a lot of work with a addictions, depression anxiety stress that kind of thing. Was hoping she worked with trauma survivors but you can’t have everything LOL! The SMHRF model is supposed to be trauma sensitive anyway, but who knows how far along they are with things. From what I’m hearing not that far. Will suck to be them when they get their yearly first survey on this.

So was very happy with how all that went.

Very excited for tomorrow! Sadly found out that the Old Country Bufet that we used to go to closed. So we’re going to this other one which for some reason paratransit had this huge drama over their computer insisting it wasn’t in Chicago. Who knows? Finally got cleared up. Will be heading out around one. Thinking of Krissy being home for thanksgiving. Was kinda depressed at the thought that she wouldn’t be there because of bad memories or something. Wish Jess and I could go wish we were like a few hours away bty car or something! One day!