May be a long post my trip!

Hey everyone,

So wow Jess and I are home finally!

I’ve been trying all day to gather my thoughts around our trip. I think I actually have something concise to share. If you have questions or comments well feel free to comment or message me.

So I left off saying that my house was a total spa compared to Albany.

Friday we got up and Krissy surprised us by having us go to a nail salon to get our toes done. I’ve never had that before! It cost $30 per person but my toenails are shiny and my feet don’t smell LOL

Then we went home and hung out.

About the conference: The hotel was so plush and amazing! Lots of walking though between rooms and just around the building. And lots of people! At one point someone said there were six hundred people!

Loved our room and nice beds and stuff.

The orientation session was weird. Instead of people talking about their experiences coming for the first time, a few people did introduce themselves which was good. But like there were these peer mentors but instead of them introducing themselves even saying their names, someone just said to look at their ribbons that said mentor. And well people did wear name badges but that doesn’t help mee, and not everyone can see the print on the name badge.

So the whole thing was just so confusing because there seemed to be so much tention in the room and like people arguing, it was just intense. I can’t even describe it but it’s like they’d been in thisheated conversation and I came in in the middle, about what language we use and psychiatrists lying to you and stuff. And it made no sense to me.

People did introduce themselves I guess that’s what it was supposed to be, the heated discussion it was supposed to be everyone introducing themselves. I did speak and was honest about the position Jess and I were in and stressed needing to connect with MA people.

By the time all that was over I was super anxious. Then there was the most intense traffic jam line I ever was in to go to dinner.

And I lost my favorite rock for good!

The noise was so loud everyone talking I put on my headphones that I carriedaround with me the whole time. We basically ate and were outta there. I felt bad for missing the opening talk but I was literally drained.

The next day thankfully was better. I met a few people I’d been talking online with and that was really nice.

We went around this room with different tables in it with info. We tried to stop about any MA ones. Had a good talk with someone from a center in Worcester. They were really nice and I liked what they had to offer. I also talked over the course of the weekend with a couple people from the western MA RLC who I also liked very much.

Other than that didn’t meet anymore MA people and was kinda disappointed.

In the afternoon we did this workshop about facing hard times. The presenter had a good sense of humor and was very engaging. I had trouble sitting still and paying attention for that long, or for any of the workshops. Jess wonders how I did school LOL!

So we went back to the room. At this point I had the strong sense that we were finally here in MA. And there was no way I was coming back to Albany at all.

This made things take an interesting turn as after that point a whole other subplot of the trip was my rollercoaster around that statement.

So I talked to Jonathan. He was hugely impressed at how well things were going. And that me saying I didn’t want to go back was certainly not something he expected but it did make sense. He said in his across the board totally over optimistic way that he’s moved people to and from Chicago from Various states, not MA, and it’s soo easy!!

I’m like yeah ok.

But he had me convinced it was the right thing to do coming back.

So we had dinner. Oh forgot to say the food at the conference was terrible I was surprised. We had the best food at the hotel restaurant.

Somewhere later in the night the whole “we need to stay here” complex came back with a new intensity. I wrote anyone I could and was absolutely convinced one way or another we were staying. It just felt so right. It didn’t make sense to fly back here just to have to do it again in a few months when we’re right here now!

So I had a rough night tossing and turning. In the morning I decided to go to the peer support suite. A mobile version of the Western MA RLC respite. So what’s funny is people I asked had no idea where they were set up and acted like it was top secret. It was only when I asked someone in private message where it was and if we could just come on in that I got my answer.

So I went there. The people were soo nice it was awesome. This one person listened to me tell my long story and even understood when I said part of how I tell stories in my own little tangent kinda way is due to being autistic.

So talked with her and then the person I met online who already knew a good part of things. They both didn’t want us to go back either. And hated Albany stuff especially the money thing. But we had the problem of my family selling the house, literally a realtor bringing in clients almost daily. And the plane ticket back here.

At first with the first person I sort of focused on telling my story and the thought that if she didn’t want me to go back either maybe something could be worked out.

With the person I sort of already know we kinda explored more practical options and realized there wasn’t very much we actually could go. I tearfully accepted that Albany would have to be a place to live for now. We’d do our plan go to BCIL get as much information as we could and work like crazy to get everything going.

I give the people there so much credit for how helpful they were it was really nice just to be there and have a period to talk about things.

So the rest of that day I forget what we did. I think we rested.

Monday we also rested. I went to a workshop lead by a couple people from the western MA RLC and really enjoyed it. Again I was so antsy I couldn’t sit through it all but got through a good amount.

Going home again was like a spa. Just awesome to eat real food be in a quiet good smelling environment and have Lucky around. He entertained both Jess and I and I think really loved Jess. She took lots of pictures and a couple videos.

The next day Larry from my apprenticeship days picked us up to go to BCIL. We were beyond grateful for his offer of a ride as stuff with The Ride was really getting stressful.

I really liked the place. It was a very relaxed environment and all the staff, even front desk were awesome.

Sadly we couldn’t do much with all the paperwork we brought. We had thought we could start transferring masshealth, filling out other applications and I don’t know doing more. But Andy told us that we really couldn’t do anything until we had some kinda address in MA. We could have used my parents address but they’re selling the house. He said finding housing is extremely hard and the best way is to find roommates or go through subsidized housing. And not to limit yourself to any area to apply everywhere.

I then just got overwhelmed with well if this is the case we really really need to stay here! Stay somewhere so we can get ourselves going. Otherwise, we’ll be back here with Albany taking our money and be just going backwards because we can’t do anything without having money so it just seemed so hopeless. When feeling emotionally unsafe with my parents I’d gone to various people’s friends of friends, houses. And while looking back it could have been potentially unsafe it wasn’t and I do trust the new friends I’ve made and their friends.

Jess put her foot down however. She said she would not stay in a shelter, or be moving every few days/ weeks. And if I wanted to stay the surest way would be to get hospitalized and be set up with services somewhere. She however would not be hospitalized and so would go back to IL with or without me. That took the wind out of my sails. A huge part of me feeling confident about being more independent is knowing she’d be there. I’d surely get lost in the system as a multiply disabled person.

So I said ok fine. And we went home. I’m not sure Andy knew quite what to do. It’s a very unique situation us coming out of state.

So that night I actually asked my mom/ sister if we could stay just for a few weeks. That we couldn’t find something in terms of roommates for September because everyone’s like already done that. So it would have to be October at the earliest. Could we stay and get stuff going and then move pretty quickly? I was so worried this would stress her out/ she’d be upset at me. She wasn’t. She just explained about the house and how they don’t even feel like its their house anymore because it’s kinda not and how they could be forced to leave in two weeks if a buyer wants it.

Then my sister gave me/ us a huge talk on how hard this is gonna be. And how we need to save the little money we have, even saying we don’t need the very simple stuff we buy. Which is not true we absolutely do need some of it. Shee eventually got that and scaled it down to even a few dollars saved a month. Which I agreed to.

So I got it. Period. My parents couldn’t support us right now physically/ financially and even on some level emotionally.

Ok. Plan B. Reaching out.

I spent a very concentrated amount of time, basically the rest of that day and into the next looking for any option around staying. Asking people. My family was horrified about that, especially my sister. But people ask for help when they need it, I wouldn’t ask if I didn’t need it and I hoped to return the favor. I wouldn’t know til I asked.

And people were extremely concerned/ empathetic. While Andy had said when I’d first asked if there was any kind of transitional housing, no, someone kindly sent me a number of a centralized list of safe housing/ shelter. I didn’t get a chance to call them however, or make any calls because we went to Grammy’s.

That was an awesome experience. To see her cry and hug me and how happy she was was like at the heart of my family experience. That and seeing how well my mom handled stuff even in severe physical pain.

So we got back and I did more research. Like ya know me. I’m like a dog with a bone.

After dinner my sister caught on that this was happening, well I was FB posting while at the same time trying to be secretive and changed tack.

She said that the plane trip fare was $400! And there was no way my parents could get any of that money back. And she totally understood why I absolutely would not want to come back but I was getting on that plane the next day and there was nothing I could do about it. She said she knew that I’d work my ass off to get back, since she knew how I could be still trying to find a way to stay even after they said no. I kept saying I wasn’t asking them for support, I knew they couldn’t. She said yeah which was good. That my mom/ parents, especially mom would try to give me money/ be there even when they can’t be but she’d remind me of the reality of things.

So after that I knew that I was going back whether I liked it or not. But I had a lot of instructions from her about saving money, having her/ friends look at places and other stuff.

I tried to enjoy the rest of the night. The next day we saw Grammy again had another dunkin doughnuts lunch and came back. Coming back wasn’t as depressing as I thought. My babies really missed us! And our room was the same special place as ever. I was glad to be there. Charice and Nakia picked up and they said we could be out by Christmas if we worked hard and communicated with our caseworkers. I felt like saying our caseworkerbetter communicate with us.

Anyway so I had a good night’s sleep. And already today people are being so helpful. Someone sent me a contact at the newton housing authority which I wrote. I have info for another agency. And just the support I’m getting for this is amazing.

So that’s my trip. Kinda intense huh? Especially the almost staying in MA floating around part! Now I know why people do desperate things like fly to a random city with nothing and just do it. I know this now having felt it.

But I know if I keep at it I’ll be back in MA.I’m determined wherever we end up in MA, with the exception of the Cape (who needs the ocean all the time and it’s pretty isolating not in summer) is fine.

I really like the western MA people and that Worcester center. So we’ll just have to see.

If you’ve read this far you’re truly a loyal reader thank you!


I’m at my house and it literally feels like a spa LOL

Hey world,

I’m sitting in my mom’s room! Well Jess’s room for now. I can’t believe we’re here. It has been such a long day waking up at three in the morning! Both Jonathan and Anna were awesome. Honestly forget why they both came but I give them so much credit for waking up that early! Apparently they both fly a lot so are used to it. We had a great ride going over Jonathan’s last minute wisdom and hearing silly stories on how Jonathan’s brain goes nuts on coffie and pop and just yeah!

We got Dunkin doughnuts for breakfast smoothie and crosseant!

The flight was good. I felt the jarring movements of the plane more and didn’t like it much. I’m more sensitive to things like that since my breakdown. I wish the plane seat turned into a bed. But between Jonathan, Mr. J stuftie, and Jess’s shoulder I got a good amount of sleep. Took awhile to get over to where Dad and Krissy were but it was soo awesome when I heard them call out to us and got hugs!

Also a long walk to the car and usual forty minute ride, I’m so used to that now. I could even tell the turn into our driveway after all these years! Mom was outside to meet us. She walks kinda crooked and Krissy said she’s fragile as glass so I can’t knock her over but she actually isn’t that fragile. But anyway so yeah. Walked in and everything literally smelled and felt all the same as before. Most of the furniture was in the same place. Lucky got put in my arms and it was the best feeling ever. He of course was half asleep and so fell right back to sleep. Everyone said that meant he remembered me. I missed Toby and Simon and still do but it wasn’t as traumatic as it felt in my head. I think I was and still am overcome with excitement and just OMG I’m here.

We’re gonna gain so much weight just by our visit. We ate way more today than we do at Albany in three days! We had apple crisp. Went to Verizon. They were so patient and great there. Took a look at Jess’s phone and said the rice should be working and absorbing the water and it should actually be ok. Jonathan brought the rice this morning so I guess that’s the thing to do. Hard to believe it can recover from that.

We were really worried about getting my phone to work because the batteries were so dead. But this woman was soo patient and eventually after like a half hour got my contacts transferred. So that was a huge thing. Then we ran by Kmart. We got some clothes we needed, new headphones it was like Christmas! Then we came home and had lunch. Marcaroni and cheese and green beans and a brownie. Then we had a nap. Watched TV and generally chillaxed before having a big dinner. Mom did and sorted out all our laundry even though Jess did do it. I guess they wanted to make sure all the Albany germs were out which is actually a good thing.

I just kept saying how amazing it is to be here. Quiet. No pages, no yelling residents or slamming doors. Eating without waiting for crowded elavators or people totally zoned not even able to know how to walk around right. Just soo peaceful. Real food. Just everything OMG.

So we ate again an awesome dinner. I had a shower with lemon soap and apple shampoo and am now on the computer. It’s soo peaceful. Have talked to all my family about us wanting to move and they agree. Krissy even agrees about all the mental health resources that are in MA because she’s had friends that have needed them. Jess likes the woodsy type towns, like less away from the city with the trees. I have a feeling she’d like western MA I’m just not sure what things are out there I’d be interested in. I know they have peer support stuff and everything just don’t know about hotlines or other mental health resources I could volunteer with or cool people to connect with. This weekend is gonna be amazing for that! I’m just gonna talk to everyone and let them know what we’re trying to do and get their opinion. Because I know people from all over the state are gonna be there. I’m just ready to make it my mission to find out as much as possible.

But right now am getting really tired. So will probably just relax in my room soon. Every day probably is gonna feel really long but also amazing. Honestly a couple hours in I told Jess I didn’t want to go back to Albany at all. The first thing she said was we don’t have enough meds. Beyond that I remembered that my parents do have to sell the house and won’t be able to be in hosting mode for likely more than a week anyway. It’s just gonna kill me even more going back after I’ve been in a house that feels like a spa LOL

Speaking of my sister surprised even mom by having us get our toes and nails done like at a salon! Not that I’m really into that but it will save mom’s back and be an interesting treat. Will update you tomorrow. It can’t be going better


emotional day! it’s really happening tomorrow!

Hey everyone,

So at this time tomorrow I’ll be having had dinner at my parent’s kitchen. No yelling, including residents or especially staff! No gross food! Get to hang out in an actual house no endless pages on the intercome. No med line. No having to navigate a building of 350 people with two elavators, one still not working. No terrible smell. It will be like Heaven!

And I’ll be blogging from whichever room I set my laptop up in. And Lucky will be somewhere nearby.

It’s been such an emotional day. Last night I had a lot of trouble sleeping. Part of it was imagining moments. Like the very moment I see my mom and jump into her arms, and probably knock her fragile self way over and do more damage to her back! And we’re both crying like OMG it’s been five years what the hell?

Same with my Dad he’ll probably pick me up and swing me around. Krissy too though she’s not a touchy feely person.

Then coming into the house. Just feeling and listening and taking in everything. Remembering how it used to be and how it is now. Bare and empty, though the realtors are backing off while we’re there so we can actually relax and live there. And especially no Simon or Toby. I try to prepare myself for that. For looking for them in every room and not finding them and just the emptiness and shock of actually being there and experiencing the loss. Rather than just being told about it.

And then my Lucky! He’ll probably be sleeping when I pick him up. And bite me with his barely there top teeth and be his same self with his ugly face and pink ears all back and tail going!

I just wish I saw the other pets too like they were still there. It was such a huge source of anxiety and depression since I’ve been here, and a visit has seemed virtually impossible, that the pets would die before I could see them. And everyone said it wouldn’t happen I shouldn’t think like that. But it did. And no amount of Lucky being there can make up for the other two not being there.

Not only was I thinking about that but I just finished a new mental health YA novel. By the Time you Read this I’ll be Dead. Jonathan heard the title actually gasped and said uh that would keep me up too!

It is a startling book about a girl with several severe suicide attempts under her belt and her experience in a chat site for people who want to kill rthemselves. Anyway it’s such a shocking book, so much there I’m not sure how to even review it. All the characters are so intense, and you’re really in this girl’s head and by the end you’re not sure what she’s gonna do.

So yeah. Not sure if I’ll review it tonight but might as I can’t stop thinking about it.

So yeah. Had a good nap today. Saw Jonathan, yes actually saw him! This afternoon. He actually made a meeting. So he’s his chatty self like hey we’re going to the airport tomorrow talk talk about waking up and getting ther and how we’re gonna do it and everything. Last night I said I was gonna try for neutral. Well I couldn’t. I couldn’t just sit there and watch him talk like nothing happened. He said something about how great it is that this has happened and something about less stress than ever or something and I’m like actually you put myself, my parents and everyone else through the worst stress the past few weeks!

And I went off on him. Apparently he said in his “don’t push it voice” that he had some things going on and he got to my mom as soon as he could. I was like well that’s just fine but let someone know that! Send a text, send a voicemail have someone call do something!

He just listened. At one point he tried to pacify me and was like you might want to try and table your anger. I’m like no that’s totally stupid!!

So yeah. I eventually stopped because my mom out of all people had called him and he actually answered. So things wwere good with the flights and whatever.

So that was cool. Jess did laundry. Our latest development is she put her phone, and we only have her phone because mine doesn’t work, through the washer!!

I wrote my parents right away of course. I’m just like OMG panic! How will we do this being in an airport where we can’t contact anyone because we have no phone?

And she needs her phone like obviously! Because my phone wasn’t working she put everything for that ride set up thing under her name. Now we’ll have to use my phone which thank goodness will be gotten like right away.

Just another thing to add to this very stressful thing. Everyone is going nuts trying to make sure we have everything and it weighs how it should, and people will be there at the right time. I somehow flew a few times alone. Packed myself and just like went. I don’t know how I did it honestly like at all!

I can’t believe we’re doing it at all. I worry about how easily I burst into tears. Here it doesn’t matter but the minute my parents see especially my mom it will really upset her.

Well anyway I should go. Will keep you posted about any other last minute emergencies/ developments if I’m on the computer at the time. But hoping we’ll be safely there next time I write


already half packed, sorted out paperwork and not much left!


So today was great. In the morning Jess and I packed like half our stuff. Anna helped me sort out some important paperwork, insurance, social security stuff, for the appointment with Andy next week. He’ll probably be very shocked, I hope impressed with how proactive we are! Just want to get the most paperwork in as possible. So I’m happy with that. We have the PRN situation finally sorted out! So that’s good.

After some confusion Jess will be talking with her therapist over the phone instead of going in to see her. As Jonathan says we will be meeting with him at quarter of two. Am not c ounting on this meeting, like at all! But if it happens it happens. Will try for a calm and neutral approach with him but not sure how emotional I’ll be. He’s really broken my trust around him doing things when he says he’s going to and really being there. Like this was the biggest most important thing I’ve done all the time I’d been there. And in every talk we ever had he basically said he’d be my main support and my family’s support on this going well.

Well not only did he totally stop communicating he got my parents and I very mad because he delayed scheduling the flight for so long that it cost extra. He never actually contacted them to establish a relationship like he said he would. And I haven’t been able to be a part of talking with him on anything. July 26 was the last time I had a meeting with him and things seemed set.

The last time I talked with him was the day after he finally verified that he was taking us to the airport so my parents could book the flight. And he totally avoided responsibility for everything and walked away.

So yeah who knows how things will be between us. On his end fine. My mom said he acted like nothing happened on the phone with her when he finally did call which is typical.

I have to say Anna totally stepped up to the plate. She’s one hundred percent about this trip, us looking into moving just everything. I think maybe she needed that little weird emotional experience to clear something up in her mind or, I don’t know something. Because ever since she’s been totally on target. Which I am soo happy for. Because my main support here has always been Jonathan. He’s never been possisive like wanting to be my only support, in fact he started to step back as he saw me finally starting to trust others. But I always had a foundation of trust with him that I never had with anyone else. I came really close with Edith. Thank goodness Jess has her PRC who I hope stays forever

So yeah really brings home needing to find other supports. I may explore seeing Jess’s therapist Jonathan said it would actually work out and be good for both of us. So I don’t know.

Will figure out once back and knowing more about our options.

Tonight Jess and I spent time looking after all the different options for groups at the conference. We’re gonna have the best time! There’s an art room, youth room, and all kinds of stuff! And as it’s taking place in MA a huge number of organizations have representatives, or I’m sure people coming, who are from MA and know the system. So we’ll get invaluable information on everything. Knowing me I’ll try to find roommates LOL. Not really not after I was blocked by someone I really connected with. I think if I hadn’t written her so much or asked that roommate question, I wasn’t even pushy about it! She would still be talking. But maybe things will be better I don’t know.

So yeah totally chillaxing. Tomorrow should be totally just last minute preparations.

I can’t believe we’re actually doing this!!


Productive day haircuts getting paratransit together and BCIL paperwork

Hey everyone,

This week is starting out well with a no stress day. Well actually that’s not true, umm was pretty stressed this morning trying to get a visitor’s status set up in MA. Yes Robbie shoulda done this sooner LOL!

But the people were really nice and I guess in forty eight hours we’ll have it confirmed that it’s done. Then can just book the trip. Don’t know how we’ll pay as in MA you don’t pay the drivers in the car like here in IL.

Anyway that was a huge relief. Then I sent out an e-mail to Andy at BCIL. Copied everyone under the sun introduced ourselves and our goals for going and asked about needed documents he’d ask for on like the first few visits and that’s what we’d bring as we’ll only be there for that one visit.

Such really nice people on these roommate fb groups. Seriously they’re liget! You can look at their profiles and they’re like normal. A couple went to Lesley and stuff!

They’re having a roommate mixer at a bar, LOL not my thing, but hey. I like the idea of having a space to just mingle and chat why not a restaurant or I don’t know anything else but a bar?

Anyway it doesn’t matter cause they had one Sunday and one Tuesday and we’re not gonna be there those days. Put out a bunch of posts about usjust saying we’d like to connect with anyone at this point. Maybe can meet some people at the conference. Or Andy might have leads. I guess many people are just going for one bedroom or studios with no roommates. Way for Jess and I to be different always! But they should have a roommate group matching thingy there! We can’t be the only disabled people looking in fact I connected with someone needing a new home in a hard situation. They say that if they find something before when we’d be moving, earliest December, of course they’d grab it but hopefully we can still meet.

It gives me hope we can really do this!

Anyway other than that am just chillaxing. Hopping for another good day tomorrow. Did have an ativan in the afternoon and that helped a lot!

Mom is double checking she has all the staff’s info just in case and to ask any questions. She said she’d like to talk to Jonathan or Anna and I said I was sure Anna would talk with her. But not sure about Jonathan at all. Obveously.

Not sure I blogged a whole lot about this way back when but any time Jonathan and I talked about the visit home he promised to be right there like totally talking with my family clearing up concerns just being therapeutically totally supportive.

Well obviously that didn’t happen. It shows my growth that I know even six months ago if I didn’t have him backing me up I probably would have just not gone.

I am sad and very mad that he did this. I hope he’s not like this around us moving out but I have a feeling he might be.

Anyway tomorrow is just hanging out. Jess has therapy I think Anna will see me and say goodbye. Then Wednesday we pack and get to bed early!



Last things to prepare!

Hey everyone,

So OMGOMG we’re actually leaving on Thursday! Can’t believe it!

Tomorrow first thing will be to contact The Ride, paratransit, to see about visitor status. Then will e-mail Andy, the person at boston center for independent living to ask about what documents we might need to bring with us. I guess they usually don’t ask for much at the first visit but since we’re coming from out of state best to be prepared.

Then Tuesday Jess sees her therapist. Hopefully I’ll see Jonathan and he’ll actually call my parents like he’s promised ongoing to address any concerns, though him not communicating about the flight was the biggest concern ever!

So Tuesday will just chillax. And Wednesday we’ll pack everything up and go to bed early! Jess says take an ativan mid afternoon in hopes the night one will work faster and I’ll be more relaxed and go to sleep early that night. Don’t know if I’ll be anxious or excited or both. Then will wake up at three in the morning!! And Jonathan will take us to the airport!

Mom’s already planning meals yay actual good food!!

In other news have been obsessing about moving as usual. All these roommate adds, in addition to high prices that I don

‘t quite understand how everything adds up because I’ve never handled finances in housing, soo many only want one roommate! It’s like hello we come as a set!

Plus everyone’s looking for September and we would want to move at the earliest December.

So yeah but anyway.

Umm let’s see. Got blocked for the first time in my life on FB. Really good seeming new friend and we were mutually supportive I thought. Then she just blocked me. Well I might have suggested we room together LOL but I was totally like no pressure! And not sure if she saw the message cause she said messenger wasn’t working Anywaty then people in group I met her in said I’m posting excessively and not giving space for others but literally no one else posts in the group.

So who knows! The person said I’m using the group like my personal FB page. I wanted to say I have one of those already LOL! Seriously I was supportive like OMG!

So that was interesting. Now just tired and chillaxing.


Trip to walmart and yes to PRNS!

Hey everyone,

So woke up today and Jess got a text saying we can have our PRNS a small amount but whatever it’s better than nothingAm soo relieved and that takes like half the anxiety away!

I got to ride in the wheely cart was kinda irritable anxious during it all with crowds and narrow pathways and stuff. But we got everything spent way more than usually but we got a suitcase for Jess and other trip related stuff which is what the money is for.

Had burger king. Had the longest ride home but listened to a book on my super noise canceling headphones and that was good.

I am feeling a bit more trusting of Jonathan as he did manage to get Dr. Patel to agree which I don’t think anyone else would have. And he’s set up a time to take us 3 in the morning OMG! We’re soo gonna nap when we get home.

My mom said that she told her realtor that we would be there the days we’ll be there so she’ll do no showings then. So I guess my mom can do cooking like any other time! I’m happy but she’s obsessed with it.

To the point that after giving lots of options around the appointment on Tuesday the only one she’d go for is if We went to the appointment with the ride from concord. I guess both mom and Krissy have done so much driving. I’d rather have her not spend so much time tiring her self out cooking I care more about getting this stuff going than food right now. Of course having actual good food would be amazing!

So will have to look into the visitor ride thing. Hopefully can be done pretty quickly and hoping will be the last thing to get ready! We do want to bring all important documents there so that Andy has as much info as possible for this. Very excited to be thinking about all this but also terrified Can we really manage this? Jess went into total collapse and almost died. I would feel so responsible if she did this due to not having the support of the people here that she’s used to.

But I’m getting more and more fed up with so much of Albany! The hardest thing will for sure be finding a new therapist! That was part of my spiral in Chicago. I floated between interns and really there was nothing good at all so I gave up. I can’t do that now I need as much support as is possible.

Have been looking at this agency called Riverside that has all kinds of programs including day treatment, residential services, people who come to your house to look in on you ETC There are other similar agencies in the area.

Which makes me happy to have that kind of choice.

Two friends are being total cheerleaders around everything we’re doing and both give me hope that this will happen


continued answer of no with prns and no in person trip to BCIL and bedbugs again!

Hey everyone,

Another frustrating day. We had Callie the ombudsman who used to be staff here really check into the PRN situation. She called different staff here including assistant clinical director who all repeated answer of very likely not. Says they will try talking to our doctor on Monday but probably won’t do any good. Jess heard the same thing from the woman that schedules doctors.

Apparently I was right in that this just doesn’t often come up as people don’t travel very much. Figures we’re the big exception.

Well there’s nothing we can do so will just have to deal and if we have a major crisis when we get home so be it. Hopefully it can hold out til then. Really don’t want to visit emerson hospital ER as was suggested as a last resort. They’re very bad with mental healthcare so I’ve been told by a trusted psychiatrist and are just a not great hospital in general.

So then my mom writes and asks if we can change the appointment at BCIL to Monday instead of Tuesday so we don’t have to go back and forth to boston and she wants it relaxing for everyone. Basically they don’t want to drive us. I wish she said so in the first place.

So we’ll just have to make due with a phone appointment. Really disappointed me as I’ve been really really getting mentally/ emotionally ready for this appointment getting awesome information on questions to ask/ things we might say we will need. Would be great to just be able to sit in the same room and just get going on all this. I literally have no idea when we can come back to visit because we have no idea where my parents will be moving to. Unless Jess and I stayed with a new friend. Would take awhile to save up for plane tickets but at least we wouldn’t be saving up for hotel as well.

So far no one has found either my suitcase or any extra one for Jess. So I guess we’ll have to buy one.

And then found out we have bedbugs again. On our floor not our room. In a room where people go out and bring stuff in off the street so of course it would be back! They’ve done an awesome job of keeping them out but with 350 people what are you gonna do?

I’ve been waiting so long for changes that they say will happen. The reorganization of this whole system which would likely make things a lot better. But I know that with the way IL is we’re lucky to be open at all.

I hate living here right now. I know everyone is busy with emergencies/ things come up/ each caseworker has 30 residents plus whatever is going on/ Jonathan is the clinical director and has to run this whole facility. But I’m tired of being 1 out of 350! I’m tired of the bad food and bedbugs, and people all crammed into one spot or another and the noise and the smell and just everything.

With Jonathan plain seeming not to care (Jess double checked today that he would be taking us to the airport and he said yes, I’m actually surprised he’s doing this after not doing so much) Anna zoned out half the time, understandably, and just this trip that staff say they’re a hundred percent for yet this place has made it ten times more stressful I’m just done!

From looking around online and talking with people it sounds like the resources in MA for outpatient anyway are way better than IL. I know it’s not perfect but at least it’s better. More creative anyway. But I know it will take a very very long time to get anything set up. I’m sure people at boston center for independent living hasn’t worked with people from out of state before. Yet again we’re a unique situation!

People are saying apply for department of mental health which we will but I know it’s a headache to apply for and you basically have to justify that you’re sick enough for the services and even then it’s a struggle.

But I guess you get more than you would on masshealth which I’m told not many therapists take.

So we’ll see what we can do. Will probably have to fill out a ton of housing applications though as I’ve said a million times I refuse to be in an unsafe situation!

And if this trip is any indicator the staff often through no fault of their own will take their time on this.

Just fed up and frustrated and I know I’m gonna hate it ten times more coming from an actual house/ hotel with a small amount of people back here.


Flights are confirmed but still issues with taking PRNS with us

Hey everyone,

Well I almost had a full day of no issues! The flights are confirmed and we have everything for that. My fundraiser money is in my bank account yay!

So things were great. Til Jess came back from seeing her caseworker. Since Monday when Patel said no to PRNS we had our caseworkers talk to her. And Nakia’s said the dr. said flat out no. And the caseworker did not ask why or try to work with her on this. Why are staff literally afraid of higher ups that they won’t get simple answers or really fight for the person their working with?

I mean this whole thing makes zero sense. My ativan is scheduled. So I can have that amount with me every night. But I can’t have some extra for a PRN even though PRNS are in my orders? I’m allowed to have all my scheduled meds they trust us with that but not the other thing.

I’m realizing that maybe one issue is that residents just don’t travel enough to where this comes up. I know that many when they want a break totally just escape to friends and that’s it. Many don’t care at all about meds so will take whatever or nothing at all.

So it could be that this really hasn’t come up if so many people don’t have answers.

So I wrote Anna and Jonathan not sure what writing him would do. She knows how much I need this med. I normally do not take it during the day because things are in a routine here there usually aren’t any really stressful things going on. And if I am anxious I feel safe sitting in the room trying to distract myself crying or sleeping. Out there just being in that house is gonna set off major emotions. Going to the conference which will be lots of fun and I’ll get so much out of it, will also be a huge anxiety because I’ll be trying to connect with others talking about moving back to MA going to the independent living center for it. Just everything that’s good about the trip is also gonna cause anxiety and I’ll be very emotionally vulnerable.

Yes I have other coping skills for anxiety mainly napping, but it’s such a safety for me knowing the ativan is there. And in all the talks I had with Jonathan for months and years about this nowhere did we even think that I wouldn’t be allowed my prns. In fact part of our whole plan for dealing with stuff is I’d take a PRN. If we knew this couldn’t happen we would have had other discussions I guess. But I’m totally unprepared for it. And of course he’s so hard to get ahold of that I’m not bothering asking for a meeting. Just wrote him on it along with anna.

It’s crazy no one will ask for a straight answer. It’s like doctor says no and their word is law. Like seriously?

So yeah we’ll see I’m seeing Anna tomorrow. Told my mom about it maybe she can do something.


Well flight is finally booked and moreJonathan craziness

Hey everyone,

Well today I only cried like a quarter of the day instead of half the day and actually took an ativan so that’s good I guess.

So what happened last night was my mom got on her angry side and left a very nasty message for Jonathan saying that if he didn’t call her she would call the director and if they didn’t help her she’d call the news station in our state!

It was the funniest moment of the day because I don’t think a boston news station can report on something in another state but I’m sure Robbie has that answer.

My dad also textd him something I’m not sure what probably along the same lines.

So hat do ya know he calls them back at like ten at night.

And acts like nothing is wrong/happened! Said that an earlier flight is best, well they had like no choice in the matter anymore because there were only early ones left! And that he’d take us to the airport. Kinda concerned if his record for doing that is like it has been the past week and a half.

So my mom and Krissy were able to look at flights and stuff. And we have a six AM one!

But at least we’re totally booked now. I wasn’t surprised when Mom said she talked to him and he acted like nothing happened. Today I was determined to have him help us with the last of things and let him have it over the past week and a half craziness.

Well before lunch he replied to Jess’s text saying not today for a meeting. I’m like are you kidding! I was all ready to send my mom at him again. But on the way from lunch we ran into him.

He had good intentions but his whole reasoning for not being in touch showed he hadn’t been paying attention to anything anyone has been sending him the last couple weeks. He says oh I wanted to kill two birds with one stone and go take you to the phone store the same time as our meeting. I’m like no. The phone is done it’s not an issue anymore. My mom is gonna take us to the phone store when we get home

This was told to him multiple times right in the beginning of mom nicely starting to get in touch. And clearly saying she would take care of the phone please focus on airport stuff.

Then he said he’d take us to the airport. We will have backup not sure paratransit could take us so early in the morning but we can call I guess. Also a former staff member gave us her contact info if something goes wrong. I told her about Jonathan’s antics lately and she’s not pleased. She askd if we wanted her boss the ombudsman to confront him on it. But he and this woman get along so well I doubt it would do anything.

So anyway I went at him sarcastically asking why he thought we had to have a six AM flight? Before he could say anything I said it’s because you haven’t been in touch with my mom for the last week and a half where we could have gotten the same great airline with reasonable times for flights. That we wouldn’t have to deal with the stress of being up so early along with all the other anxiety. At this point I’m completely angry crying everything. He said that this had nothing to do with my mom not connecting with him over all this time, that the time of day was just better travel wise and getting around the airport and everything. I snapped whatever you can tell yourself that!

And he literally walked away.

So I know where he stands on everything obviously will take no responsibility.

Had a good meeting with Anna, and she was genuine and apologized for not being helpful in the past and she’s still learning. At this point any staff I feel comfortable with here is a bonus. I appreciated her heart felt hug.

So flights are officially booked! Had an emotional conversation with Krissy around sharing a bed with my mom. I was so freaking out about this because it would be the perfect opprtnity for her to say whatever she has to say about Jess and me and my illness, and what’s gonna happen in the future and everything else and I’m stuck in bed with her!

I cried because I just couldn’t hold that in anymore. It was something I planned to discuss with Jonathan the minute I heard about it but obviously that never happened. The support he was going to give my parents leading up to the trip and me obviously is not happening.

So Anna is going to do everything she can. She talked to my mom and my mom liked her. She didn’t know that was my caseworker. At least she’ll do stuff like make sure about the suitcases. Make sure about the PRN stuff which we think between caseworkers and the doctor will be fine. On top of everything I have to explain to nursing and other staff that while here I take one every so often there it will be the most stressful situation of my life! When I explain about how things were at home, our pets dying losing the house they do get it. It’s still up in the air about that we’d get the prns but I’m really hopping.

Those are the last things really. Then just packing doing laundry walmart and haircuts!

It’s so interesting talking to Krissy who does on some level get my issues but doesn’t realize how I need to repeat things in order to process and that not bringing them up makes things worse. It’s an autistic thing! Hopefully the rollercoaster is coming to a stop now.