Log: Jun 7 + 8 (Sun + Mon) Grandma; life

Jun 7 (Sun): Airplane 10a; rest

Jun 8 (Mon): Work 8:30a – 5:30p; Go to uncle’s after work

Cactus

Cactus

Sunday: Said goodbye to my grandma. She was the most lucid she’s been the whole time I’ve seen her. She even ate breakfast (puree, fed to her by spoon). I couldn’t bring myself to say some of the things I was going to say to her, because she was very alert as I said goodbye. I kind of wish I hadn’t started crying while hugging her. I’m not sure if she knew I thought it might be our final goodbye or if she thought I was just sad about having to leave in general. I told her I love her and she told me she loves me.

I feel somewhat responsible for the following downtrodden mood of hers. My mom thinks maybe she got a stomach ache again and that’s what caused it, but I can’t help but feel that her sensing my sadness was also responsible. But apparently right after I left, she was saying things like she didn’t want to be a burden on anyone anymore, and stuff. But I thought, at least she is still saying sentences, maybe that’s a good sign.

But then she didn’t eat or drink really the rest of the day.

Meanwhile, I traveled back to these dual cities I am now calling home-ish. (My uncle’s city and Peter’s city.) I want to turn right back around and return to my grandma’s side. I already told them I would if they thought I’d be of any use. I would fly out this instant. She will be paying nurses and there is also hospice and so my grandma will have someone with her around the clock. But surely she would be even happier to have a familiar face by her side for a lot of that time. Oh, I am accidentally fast-forwarding this log — there is another development I haven’t written about yet, so look for her new home information farther down this log.

I was in airports most of the day due to flight mess-ups (well, like not being able to locate the co-pilot for several hours). Meanwhile, Peter had actually shown up at my arriving airport and was waiting for me! Good thing he brought a looong book because it was hours and hours before I arrived. We went to his apartment and I unpacked and told him about my grandma. It was nice to see him and he said it was nice that I’m back again and frankly I can’t think of anything that smells better than him. But I’m very confused and my heart is not here right now. I might go back to my grandma for a while; I haven’t decided.

Monday: Peter and I got up early and I made it to work by 8:30a. Crazy. I packed a PBJ to-go for breakfast. But ended up eating some granola for breakfast and the PBJ for lunch and I’m pretty hungry and weak-feeling now, but I’m not doing anything about it. I’ll leave work shortly and head to my aunt and uncle’s house. Maybe there will be food; if not, I have a frozen TV dinner in the downstairs freezer.

Cactus

Cactus

I caught up on things here at work. Except we did receive a bill for a service I personally cancelled six months ago, and they refused to acknowledged it because I did it over the phone and have no paper trail. Bloody hell. I’ll deal with it more tomorrow. I have a call in to a company that might be able to back my story.

Anyway, so work has gone well today. I was busy and productive for quite a while. I even called my health insurance again and am told that my termination letter is on its snail-mail way to me, and my case is currently in “appeals” and I should know more within a week or 2. Here’s hoping.

I also made a passport application appointment, finally, and also sent for another record of my birth certificate, because I am so anxious at the thought of having to mail in my only original birth certificate for this passport application.

SO the development with my grandma is that she was refusing food and liquid again today. Hospice was consulted again and it was decided to move my grandma to my aunt + uncle’s house there. I am very glad of it. She was SO unhappy at the new place.

See, she had lived in a certain assisted living facility for YEARS. She had friends and all of her familiar things around her there. But after 7 hospitalizations, including the previous SEVERE UTI and a possible mini-stroke (they’re still not sure), she was deemed unable to remain there, because she needed a more intense level of care than could be provided at that place.

So after her UTI was cleared up (the hospital said the UTI was so severe, they were surprised it hadn’t killed her), she was moved to a new home, one with a special unit for dementia patients and would be able to care for her. Before she could move into her new room, they had her for a short while in a different unit of the building, a rehab center, where she was supposed to regain enough strength to help her transfer safely to her chair and toilet, and feed herself, etc.

Moth

Moth

However, she’s been unhappy at this place. She begs to go home and see her friends but she can’t. Her rehab room looks and smells like a hospital room. The staff is very busy and not really that personable with her. Even in the few days I was there, she got weaker and weaker and more and more remained in a brain fog and asleep, and lost the ability to chew and feed herself, and forgets things like swallowing.

Anyway, so today they decided to move her to my aunt and uncle’s place there. They work and are also unqualified for her level of care, but they have hired nurses and hospice and altogether, my grandma will have round the clock care. Hospice currently guesses she has another week to a month before she dies.

Maybe she will be so happy to be back in a familiar, homey, loving environment that she will remember the will to live and will start to eat and drink again. And if not, she will spend her final days in the most familiar, homey, loving environment possible, and I don’t think anyone could ask for more than that.

I’m going to sign up for classes that begin in August here, but I am very seriously considering spending some time between now and then with her there.

Poem: Home

Now is the time.
When time lasts forever.
How can I stay
suspended.
Leave you behind.
And a smile.
You’d be fine by my side
But I’m alone here.
Gladness
in my heart.

With wings to hold me
And air to keep me here.
With silver streams of light
Warming my eyes
Reflecting streaks on the window.

I’m home.

–innerdragon

Log: Jun 2 + 3 (Tue + Wed) Calm but GI upset

Jun 2 (Tue): (No therapy); Work 11-00a – 5:30p
Jun 3 (Wed): Work 9:00a – 1:30p; Airplane 4p

Thank you for your support, everybody. For those of you who wrote me on my blog, and those of you who contacted me privately, thank you. I was really freaking out about having lost my insurance.

The rest of Monday’s log: By the evening, I had scrapped my then-plans and didn’t go to my uncle’s to get my stuff for packing. I considered: I was feeling so unwell mentally and not able to think, there was no way I was going to be able to pack. Nor would I be able to make myself food. So I went to Peter’s place instead, and we had leftovers there that he heated up for me. I felt so much better after I ate.

But I didn’t sleep. My stomach hurt too much.

Invader Zim Image -- Diarrhea!

Invader Zim Image — Diarrhea!

Tuesday: Getting out of bed was SOOOOOOOOOOOOOOOOOOO HARD. I craved sleep. I was so tired. Then the cramping hit. Near the end of my shower, I had to curl over for a minute because the cramping hurt too much to stand up straight. And my whole body was super sensitive. The slightest touch hurt me. But I have a fear of people thinking I’m a hypochondriac so although I mentioned to Peter that I was feeling like I had caught a flu, I went to work anyway.

Yep! Diarrhea! ALLLLLLLL day.

OmfG was I exhausted by the end of the day. I was given an important task late in the afternoon so I couldn’t leave work early. I did leave before finishing, however. I went to my uncle’s house and talked with him for a little while. I hadn’t talked with him in a long time again. Then I gathered the few items I needed from there, and talked with him again. But this time he was angry about his cellphone touch screen not working and threw it on the desk once out of anger and I had some memories and could see it flying across the room and whatnot so I stayed back and let him know I was leaving. I told him to come in to work today so I could see him again before I leave to visit his mom.

Invader Zim -- Yep... Diarrhea!

Invader Zim — Yep… Diarrhea!

Anyway, then I went to Peter’s and it was very late by then. I packed and talked with my mom over the phone, who told me that my grandma has a diagnosis of acute kidney injury. That is different from kidney failure, although I don’t know how. I guess it is not good, whatever it is.

I took 1 mg of clonazepam and some pain medicine and I SLEPT!!!!!!!!!!! YAAAAYYYY!! Sleep!

Wednesday: Somehow crawled out of bed with Peter. Showered. I’m all packed. Grabbed some breakfast-to-go because I needed to hit work in time to finish up these reports. I’m feeling fine emotionally, and haven’t had any GI issues yet — that could be because all I’ve eaten since yesterday morning is PBJ’s. But I’m drinking electrolyte fluids and whatnot. Got to finish up some work stuff and then head to the airport. Health insurance issues will have to wait for me. Signing up for classes will have to wait for me (I got accepted at least — have a student email address already and everything!).

UPDATE: Okay! Here we goooo! (Shutting down, doing the dishes, and heading to the airport!) ‘Later everyone!

Log: May 28 – May 31 (Thu – Sun) Many days!

May 28 (Thu): Work 9:30a – 5:30p
May 29 (Fri): Dental 8:50a; Work 10:30a – 5:30p
May 30 (Sat): Walk around potential campus; Dinner with Peter’s folks; Watch a movie on laptop
May 31 (Sun): S in town!; swing by aunt + uncle’s house to p/u items; dinner party at Peter’s mom’s place

Cool flower

Cool flower

WOW, I am BEHIND. So Thursday? I don’t recall. Work. Peter and I made food and ate dinner. Then probably went to bed EARLY.

Friday? I think we got up EARLY and I had a dental appointment (it was a cancellation by someone else, so I got to sneak in early). The good news? My teeth and gums look great, even though I was quite late in having my teeth cleaned. The bad news? The dentist didn’t know what my mouth sores are either, but threw out another herpes possibility and gave me a referral to the oral surgeon for what she and my doctor both feel are abnormal bumps on a particular part of my tongue (unrelated to the other sores). Meh. AND OMG I HAD SUCH SEVERE MOOD SWINGS ON THIS DAY. I mean it included a LOT of anger and frustration. I was blaming a particular someone in my heart for the suspected oral herpes, since I can think of someone in particular I kissed previously and then later learned that he got lip sores periodically. I was SO, SO, SO ANGRY, but it was also toward myself. My medical cousin calmed me back down, though. He said that if it was oral herpes, it’s often something picked up in childhood, and could have only just activated due to another virus stressing out my body or whatever. [Sneak preview: The mouth swab came back negative for herpes, although that particular test has a 30% chance of false negative.]

Saturday: Busy day! But what did we do? I remember the 2nd part of the day involved going out with Peter’s parents to the school I’m thinking of attending and walking all around the campus. It was fun. Then we had dinner with them and left in time to go back to Peter’s place and finally start a movie that we’ve been trying for a while to find time to watch — it got too late so we still haven’t finished the last 30 minutes of it. I think we turned it off at midnight (late).

Orange and pink flowers

Orange and pink flowers

Sunday: Met up with my old friend I met back in 8th grade! She and I were then friends through high school and have loosely stayed in touch since then. She’s great. She and her husband just happened to be in the area for something else!!! Had lunch with them. Then rushed to my uncle’s for several items I needed, such as enough thyroid medicine for this upcoming week. Then rushed to Peter’s mom’s house for a dinner party. It was nice. There were two twin 2 year olds that were like a little trouble team of whirlwind energy and destructive powers but were adorable. I did get fairly stressed a few times, particularly when one started touching a fragile-looking lamp with the straw end of a broom. And when I was expected to take the knife out of one of their little hands (“No! Mine mine mine!”). [I mean to take classes on how to interact with children– someday I really will.] Everyone I met was very nice. Then came back to Peter’s in time to go to sleep.

On Sunday, I also got a call from my primary care doctor (wow!) letting me know that my mouth swab came back negative for herpes. YAY but she reminded me again that the test has a 30% chance of false negative.

Update

Flowers

Verbena Flowers

I just have a few things to share. Today was better. I’m going to finish this post and then vacuum, if nobody comes home first. I’m alone right now and it’s nice. No pressure. No eggshells.

I think my mom figured it out, though. She knows her brother pretty well and she has helped me to understand other people’s motivations a lot over the years. She thought about it all night (actually, she had insomnia last night because this was on her mind; I may have expressed my frustrations to her yesterday). She thinks a big chunk of why my uncle has amped up his vocalizing of his disapproval and his side comments toward me is because of my tardiness to work. He probably feels like he can’t fire me, but since January 1 of this year, I have been very bad at showing up to work at any decent hour. So obviously, with any other employee, he’d want to fire their asses. But he probably feels like he can’t fire me, so instead his frustration and disapproval is coming out at me in other ways, in personal life.

I don’t plan to be tardy now that we’re at the new location. I was freaking out since back then because of the impending move, but the move has happened now (P.S. “Joe” did nearly all of the packing. I did the two cabinets of office and shipping supplies, since that’s like my little “happy place” of office life, but basically nothing else. Even when it came time to pack up my own desk I just froze and didn’t do it). I have been showing up at the same time as my uncle since we moved, except for today, when I had therapy in the morning and then waited a little extra time so I could meet “Joe” at the train station and walk with him the rest of the way to work. (My uncle never went to the office before, but will be doing so now that it is in this new location.) (P.P.P.P.S. Today was “Joe’s” last day of helping out at the office.)

I do not plan to be late, but I know myself and some of my negative qualities. If I feel like I’m being micro-scoped about what time I leave the house, I’m going to get later and later because I’ll be afraid of showing my face / opposed to showing my face.

So what I need to do is take this into my own hands and basically leave the house without being noticed and show up like it’s just any other job, not an analyzed “thing”. You know what I mean? If it’s a big “thing”, I’m going to end up avoiding it like the plague. If it’s ignored, it won’t be a big deal to me either.

In therapy, we decided that I need to move out, because I *am* dependent on my aunt and uncle right now, and so I will be treated as a dependent.

If I moved out, I could even stay at that job, hypothetically. If I went back to full time work, I could even switch to their benefits. But then I’d have to switch doctors, therapist, psychiatrist. But I just don’t know.

I got excited at the thought of finding other people to rent a room from, if I can find someone who would allow me to get a DOG. Can you imagine? I know, I said I had to sell my pony before I let myself get a dog. But can you just imagine it? Me and a hypoallergenic dog? What if I found a place near an animal rescue site? What if I could work and live near animal rescue? What if I could work AT an animal rescue place? Ah dreams!!!

I know I’m in a pretty good mental state right now because I’m able to think of being alive for the next several months. That’s so much better than when I first arrived here and could only project ahead a few days tops. Now that I’ve pictured getting a dog and living independently, I don’t know if I can shove that back down. Imagine me having my very own refrigerator??? I don’t cook but I can put together sandwich ingredients. I can keep carrots and hummus in stock. Etc. I think I’d survive all right food-wise now (I didn’t feel I could do that when I first arrived, either).

So I know that being here has been very healthy for me. But now that I’m feeling so much better, I feel that itch for independence and adulthood again…

This time, I’ll get it right.

And OMG I want my own dog again. I miss my baby. I want to get the same breed as him because he was so much the perfect match for me. But my previous therapist was quite certain that I should get a wheaton terrier, because they are apparently the top-rated service animal for people on the autistic spectrum. Apparently, they are hypoallergenic, large enough to not be fragile (my favorite breed is very fragile), and are supposed to have a very good temperament. She said they are much more level-headed and calm than any of the -doodles (labradoodles, goldendoodles, etc), making them very good for people on the spectrum.

My baby couldn’t be a service dog because he is just as sensitive to loud sounds and sudden movements as me, and is also fragile enough that I have to worry for his safety each time we pass by another dog.

BUT I like a little dog. First, their poops are much easier to address. Second, I figure that if I am ever out on a mountain with my small dog and he were to get hurt, I could easily carry him back. Third, I’ve always wanted a lap dog. Fourth, I could easily crate a small dog for travel. (In fact, here, I would only be able to take a small dog with me in a crate on the train, unless a big dog was certified as a service animal.) [[ADDITION: Fifth, they eat less.]]

But, why would I get a dog if not for being certified as a service animal? So I don’t need to be concerned about that part — the travel part. Whatever dog I were to get would be a service animal.

Then there is another catch, which is that I do not want to support a breeder (except for the woman who bred my beloved dog. I know her and she’s not a mass breeder and not in it for the profit. But on principle, I don’t really want to support a breeder). I want to support rescue animals. But because of my allergies, I am rather stuck with pure-breed animals. I would have to find rescue groups for either of the two dog breeds I decide between, both of which, I think, are a bit more rare than a lot of other breeds. There are plenty on PetFinder, though. So it’s possible. | Okay, I am looking at all the dogs on PetFinder, now [i.e., I’m “in my happy place” and will be there a while] (although I must rehome my pony first anyway, which will be killer hard emotionally). ‘Later everyone.

Journal for tonight, music practice and asperger dx

Yesterday, I played music with someone else after work. I was so nervous but it went very well. There were moments where I lost myself into the music completely, and there was only the music, no bodies or instruments there, no fingers, no thinking to read the notes, just the two different instrument sounds blending and becoming its own entity of music. Hearing but not participating in the creation of it. Wonderful moments that are only possible when the musicians are actively listening to each other (not just for pitch and tempos, but for any spur of the moment dynamics, articulations, and whatnot).

Tonight, I got just over halfway through my taxes and then got stuck needing a copy of a document I no longer have in my possession. I remember copying the document at some point in my past, so I started to search through my very-old-standing email. Oh. My. Gosh.

Such random things appeared. I got side-tracked like you wouldn’t believe. I even found the original date of my Asperger diagnosis, and nearly all relevant conversations surrounding it. Article upon article upon article. Email after email. Random lists after random lists. Discussions after discussions. Ex-therapists, ex-then-friends, ex-high-school counselor. Notes to myself. Notes to other people. It just went on and on. I’ve been side-tracked on this for hours now and still barely scratched the surface of what I found in my email account. There are so many things there that I’ve forgotten. Some, I need to forget again in a hurry.

An interesting note is that two health professionals were stressing OCD and me a lot. I don’t have any recollection of that. I didn’t think anyone had paid any attention to OCD symptoms until this year. I don’t remember it ever being a “thing”. I know for SURE I never told anyone half of what I’ve written here in this blog, so it’s kind of amazing to me that they were stressing it back then.

Another random note is that back when I was dissociating constantly, I was diagnosed with Depersonalization Disorder. This was by an ANP I do not respect so it’s hard for me to take anything he did or said seriously. I saw him twice a week immediately following College, until he randomly quit the practice one day without a word. I say he was terrible because he had a private meeting with my parents that I was unaware of then, and told them some things about childhood abuse that he should not have told them. It destroyed them. My mom is still not the same. He also told them I would never stop dissociating and that I was diagnosed with Depersonalization Disorder. He never told me that disorder name and both of my parents refused to tell me, either. He must have told them it would do more harm than good to tell me? (My mom told me years later.) They walked around in a horrible state of grief for a long time, mourning. They did question me about some childhood things. I was honest about two things and to this day I wish I had denied it all because it was absolutely the worst thing they could have heard. Horrible. I later learned he’d been run out of town. He was not respected as a mental health professional in the community.

But yeah, anyway. Some of what I read tonight was pretty yuck. Better burried and forgotten (it will be again soon, don’t worry). But some of it was soooo fascinating. I even got to read when my dog was first getting allowed to sleep up in my bedroom with me at night!!! Which helped my sleep so much; hearing his breathing and helping put him to bed at night helped me to go to bed at a better time and to fall asleep more easily.

Weekend Journal Post

Pedicularis densiflora, Indian warrior

Bad picture of Pedicularis densiflora, Indian warrior. This is a picture of my “real” camera’s display screen – I haven’t figured out how to transfer my pics off of my camera onto my computer (I can’t find the cord).

Preface: If I sound at all negative, it’s just from the exhaustion! This weekend was positive through-and-through.

I haven’t processed this weekend yet. I feel like writing anyway, as I wait for a load of laundry to finish being washed.

On Saturday, I had a wonderful, chill day with “Joe”, and later in the day my brother came over for a BBQ and it all went smoothly. I even got in a small bike ride in the sun.

I feel strange right now. Floaty. It’s not bad. I’m exhausted. There’s the physical exhaustion but it’s more. Today was incredibly stressful socially at times. [I had to take cetirizine earlier because I was allergic to something in the rental car; maybe that’s why I feel a bit floaty now.]

There were six of us total and everybody was extremely nice. They’re from a whole ‘nother world. It’s like this peek into these awesomely accepting, kind, world-wisened people who are completely chill and gentle. I didn’t actually catch which countries everybody was from, and the amount of places the combined total of the six of us has lived was pretty incredible. I definitely felt out of place. It’s the niceness. They weren’t acting contrived in any way; they were genuinely very nice people. I was out of place and the strain to hide it was immense.

Why I’d feel more in place amongst slightly rude people, moody people, people who make jokes I find offensive? People who are embittered and people who judge and people who manipulate? People who won’t notice or care if something really terrible slips out my mouth.

You don’t have to believe me, but there is a pretty fair amount of dark shit that can slip out of me sometimes. I wish I’d just embrace it because the strain of trying to keep it in can be overwhelming sometimes. I think I only let 2 shit things slip out during today, both of which I terribly regret. Two stories. There were a lot of questions during the day (the hike was 4 hours and then there was driving). I suppose I shouldn’t be so upset over just two coming out, but still. There’s honesty and then there’s keeping the social peace, and I am sick and tired of saying things that make anyone’s ears do a double-take. I especially need to work out a more socially-acceptable answer for why I am here and not back Home. My two-sentence answer tends to bring about a very awkward silence. Ugh.

The HIKE was amazing. The weather couldn’t have been much better. The view was amazing. I thought I’d brought way too much water (very heavy) but I ended up drinking every drop. I couldn’t BELIEVE I made it to the top (I did need help getting up part of it; my legs were shot by that point). It was definitely worth it. Great people, great scenery, great weather, great snacks. Some wildflowers and a tree I’ve never seen before.

I’m already sore from head to toe but I’m SO glad I was able to go! I definitely need to keep working out. I’d like to be able to hike a lot more in the next six months.

I have a new current-favorite movie: The Edge of Tomorrow. What’s ironic is that I’ve only seen it in reverse. I saw the ending once, and now I’ve seen it from the early-middle to the end. So hopefully I will catch it from the start some day.

-CUT for IBS TMI (for real)- Continue reading

Great Day

Summary: This was a really great day. I don’t think I had any mood swings, either (so I’m done counting days).

Sleep: I had terrible, terrible nightmares again last night. They were all about my ex trying to kill me again. Very odd.

Morning: I had my alarms set but I failed to respond very much to them; I managed to hit “snooze” a few times and then I nearly missed the tree planting this morning! I would have slept straight through it but for “Joe” calling me when I didn’t respond to any texts saying I was awake. Man, I really thought I had some momentum going for staying awake-ish in the mornings this week. But I won’t beat myself up over it. And a million thanks to “Joe” for that call, because I am so glad I got to attend the tree planting.

Snail on a tree

I think he winked at me

Excerpt(s) from my day: Everybody was so nice and it felt so wonderful to feel like I was helping the community somehow, even if the majority of my help was directed at lopping off the “suckers” and a handful of marked branches on the street-lining adult trees. It was warm and sunny and I actually got slightly sun burned, which is so insane because it’s February, the worst time of winter back Home. My newest friend had shown up, too, so I was not traveling around the city with a bunch of complete strangers. I had a really nice time. And now that I know these members of the group, I hope to attend again soon (although the chance of me getting up on time for it in the future…? We’ll see. I wish to attend Meditation too, and look how that’s been going. But we’ll see! I am hoping that I’m changing my mornings around, even if today was a fail). Later in the day, I got to hang out with “Joe”. I was tired from the morning events and he was tired from the activities of his morning, so it was sooo nice to get to chill out together and watch a little bit more Star Trek TNG. We actually exchanged some candies with each other, even though I’d previously been quite clear about my hatred of VD. I’m glad we had agreed to do that; it turned out to be really sweet (no pun intended, seriously). So in spite of or perhaps because of it being VD (I probably wouldn’t have tried so hard to get to the tree planting otherwise, for instance), it actually turned out to be a really great day. ❤ ❤

Note to dbp49: I even got to talk vermicomposting with one of the ladies whose tree we planted! I will post a picture later on sometime.

Tomorrow: My friend from Meditation is going to join me for a dinner party tomorrow evening. I’m a bit nervous because I haven’t seen her in a while (since I haven’t been attending Meditation and I was out of town the day she spontaneously invited me to lunch). I’m a bit nervous also because there are going to be 17 people attending and there will surely be a lot of alcohol, total strangers to me, and therefore some unpredictability. But then again, I look forward to it because I haven’t seen this friend in such a long time now and she’s so nice. And I’m really excited to speak with a female friend. I feel like that’s really important for me although it’s SO challenging (I don’t tend to know what to say to other females, face-to-face). But she’s super nice and friendly and I’m not too worried about that. I’m more worried about how everything else will go down. So tomorrow, I will get out of bed before 11, and help to CLEAN this house and get it ready for the dinner party. I’d like to throw in a walk if there is time after cleaning (preferably with the dogs).