About this time last year I made the switch from Evernote, which I’d used since it came out, to Microsoft OneNote, which is an integrated part of my Office software. After making a ‘trial run’ of OneNote to see how I could organize everything, I knew this was the better program for me. I hated to let Evernote go – they’ve been very good to me! But I just needed more than what their program offers.
imho, the worst thing about OneNote is that there aren’t a lot of templates available (although I’ve found they’re easy made), and there doesn’t seem to be much support / tips’n tricks available.
The biggest plus is that it integrates with the other Office programs – you can “print” to or from OneNote and share in the Office cloud (though I don’t use Skydrive – does anyone?). I keep my OneNote files inside my Dropbox folder – so it backs up its own backups, essentially. The program is largely intuitive. It’s easy to figure out what does what and what you can and can’t do with it. As for the lack of support et al, googling OneNote turns up what I’m looking for. I like that I can customize the interface, too. In the quickview bar, I have only the tools I use most often; everything else is tucked into the ribbon.
I have ADHD (leaning toward the Inattentive/Distractive side), so the way I organize things drives people straight up a wall. For them, it’s not intuitive or organized. For me it makes perfect sense. (I have friends who don’t like using my laptop because they never can find anything – but to me, its organization makes perfect sense)
OneNote is designed to mimic a collection of spiral notebooks, with metaphors of tabs and pages. It has six total levels of organization–notebooks, sections, subsections, pages, and two levels of subpages. OneNote also has a system of links that allow notes to contain links to other notes, or to a Web page, a Word document, or a PowerPoint presentation.
I have three notebooks. One is for all my personal stuff, one is for all my blogging stuff, and the third is for all my writing stuff. I could break the writing notebook down into three notebooks, really: writing advice, adult stuff, young adult stuff. And I might if it keeps getting more crowded in there.
Another thing about OneNote is that you can size and position the sidepanels. You can put them on the right or the left and collapse them or widen them as large as you need them to be. When you open a notebook, tabs open across the top of the display, so really you can collapse the notebook pane entirely to give yourself more workspace. As well, you can minimize the pages panel. You can also color the notebooks and individual tabs any color you like, just like a physical notebook, to help sort this into that. “Oh, that’s in the green tab.” Click! Very handy if you’re as visual as I am. One thing I don’t like is that each page and subpage (and sub subpage and sub sub subpage, ad nauseum) under a given tab is the same color as that tab. I’d like to be able to color the individual pages – that’d be awesome!
Like I said, I prefer OneNote over Evernote; it’s what works for me. OneNote gives me so many more organizing / sorting / filing options. Also, the workspace is more user-friendly – I can make everything else smaller in order to view what I need to see / work on. OneNote pastes text into blocks (similar to a text block in Word) that you can click and drag around to reposition where you’d like. If you have a lot of small elements (small text bits / pictures) on a page, this comes in handy; it allows you to put things where they’re more available to you.
Since I started using OneNote last year, I’ve dumped almost all of my writing notes into the program. Some stuff still remains on my hard drive, but bit by bit, I’m moving it all into notebooks. This is so much better to (and for) me than having endless folders with endless streams of documents. Click FAQ tab, and voila, there’s everything in a neat little row for me to pick and choose from. Even with descriptive file names, I’d find myself sitting here thinking, “Is this the file I need? Or is it this one?” I don’t have to do that any more. Less muss, less fuss – I’m all for that!
So we did it again. Preston and I bought each other the same card. We’re good at that. You should see our keepsake box. It’s full of either the exact same card or cards are so similar that they could pass for the same. A friend asked us yesterday how we do that. My only answer was, “We’re the same person in two bodies?” It could be true. And Preston just stood there nodding his head saying, “It is true!”
The same friend also asked us how we can remember what we had for lunch the day we met (he had taken us to the store so we could pick up ingredients for said lunch). Because I was starving that day? Because I was loaded with emotional trauma? Because it was delicious? Because it was Preston? Because Preston bought me lunch? Gods, who knows? It’s like people who remember exactly what they were wearing when they met. I don’t know what Preston and I were wearing, but I do remember where we were sitting (sadly, it’s no longer there!).
Have you ever heard the phrase “they’re retarded for each other“? Well, really, that’s me and Preston. It’s true. And it’s been true for going-on twenty years. Twenty years next month. Where did the time go? It just doesn’t seem possible!
But today. Today we celebrate our Gwyddon wedding. Twelve years ago today. Our apartment was full of friends and family, and we were all so happy – and so full of ritual and food! I’m sitting here now looking out the window and remembering the weather that day. To us, the day was absolutely beautiful. Our gods smiled. We lived the day under severe storm warnings. The day was full of torrential rain, high winds, and much lightning and thunder. We had originally planned to have the ritual outside on the patio but had to move it inside to the living room, but it worked okay.
You know you want to know what’s on the menu. What did we have for lunch the day we met and walked together starry-eyed into The Grille? Go ahead and laugh – we do. Deli sandwiches. We had deli sandwiches on Kaiser rolls (meat, lettuce, tomato, red onion, and dressings), french fries, and root beers. My mind also keeps wanting to tell me we split a basket of breadsticks – The Grille had the best breadsticks, and they were just a dollar a basket. But I didn’t get any breadsticks. But I did get a Pepperidge Farm frozen chocolate fudge cake for later. The cake we had with our ritual was a German chocolate cake; those are hard to do for just two people!
I told him later we need to play at least one round of Corbin-rules Rummy or SongBurst or some board game. Trivia for Dummies (but that’s not as fun with two people)? Monopoly? I’d even take my socks off for that, wouldn’t I, Preston?
Love you so, so very much. Yesterday, Today, Tomorrow, until the day after the end of Forever …
There is a sound of abundance of rain – I Kings
I love porches. I particularly love porches in the rain, particularly if they’re screened in. My great-grandmother had a terrific porch, but it wasn’t screened, and even if it had been, it still faced the prevailing winds. What Granny did have, though, was a tin roof. Her attic was located mostly over the kitchen and the “cold room” (began life as a side-porch but was later closed in), so when it rained, you could hear it deliciously dancing over that tin roof.
Now Granny’s roof wasn’t one of those new, colorized punched-tin roofs. It was made of those drab-grey corrugated sheets of tin that tended to rust with age or if they weren’t cared for properly. If wind blew across the hills “just right”, the eaves sang, and the tin whistled. I always thought that if those tin sheets ever came loose in the breeze, they would play Litz.
[[i’m making an effort to write down memories instead of letting them get lost inside to time. i collected a bunch from my old blog. i also make notes when memories pop into the forefront of my mind. this post is the second in a series that’s going to crop up now and again.]]
… read the instructions??
I guess, that is, if you can find them.
See, I made a big pot of homemade beef vegetable soup for dinner. Preston called at 10:30 and said that he’d rather have fish portions and a baked potato. Fine by me. I washed the potato and put it in to bake. When he got home at 11:45, I put the fish portions in, but I couldn’t find the cooking instructions, although I was sure I’d saved them in the Ziploc with the food. Oh well. Into the oven go the fish portions.
You can see where this is going, right??
Fifteen minutes later, I took the fish portions out to turn them over. And yup. Stuck on the back of one were the cooking instructions! I was laughing so hard I couldn’t get the fished turned over. I’m still giggling. Preston swore, though, that they did not taste like instructions when he ate them — er, the fish portions that is.
[[this is a post from 2003. i promised preston’s mother around this time last year that i’d make an effort to start writing memories down instead of letting them get lost inside my head. i collected a bunch from blue moon journal that i didn’t want to lose and saved them. i’m also in the process of making strong notes when memories pop into the forefront of my mind. this post is the first in a series that’s going to crop up now and again.]]
Looks like I didn’t blog at all about Thomas after Tuesday, and I apologize for that. Tuesday was just so appalling that after that I just got a bad case of the don’t give a damns. About a lot of things – but that’s probably another post all by itself.Or maybe an entire book …
Tuesday Thomas very plainly stated that he wants to be with family, that he’s unable to live by himself. Yet, he is still bucking the idea of living in assisted living housing. (Also, he told me that he got something from the SCL people the other day about housing, didn’t understand it, and just threw it out, gods above.) He was asked (by the medical staff and by the transplant social worker (Molly): Do you want to do what it takes to stay alive? Are you willing to take the necessary steps to get your health under control? He said he is. Then again, he also told Molly, and the medical staff, that the signs I’d made him last month and the dry erase board I’d gotten him had been a big help. He told me during his clinic visit on Halloween that he’d lost the dry erase board. I took this to mean that he’d never hung the signs I’d made, as well.
While we were discussing housing, treatment, and care with Molly, Jane whipped out her copy of the psychiatric testing I had done on Thomas in July 2009 – waving it around like it were a magic ticket that would get stuff done. She looked smacked in the face when Molly looked at the paper and said, “None of this matters right now. Thomas is over eighteen and is his own guardian. That’s what matters. He’s over eighteen and can make his own decisions. The family can discuss everything with Thomas, but the family can’t make decisions for him. He has to do that on his own.” Still both Molly and the medical staff all agreed that Thomas needs to be staying with someone and having some kind of supervision (caregiver) since he’s not been taking care of himself on his own – plus there will be days he’s not going to be able to drive himself to or from the dialysis clinic.
This brings us up to Wednesday. His creatinine was still sitting at 9.2. We were told again that dialysis was an inevitability, but we all hoped it could be held off for a time. We thought for a while he might get discharged that afternoon, but that didn’t happen. He called Jane and was talking to her at one point about it, and he said if he did get out, he could go home with me and stay until someone came to pick him up. I could hear Jane on the other end of the phone say, “No, you can’t do that. She kicked you out. She doesn’t want you there.” Thomas grumbled and said, “No, Grandma,” and tried to explain, but she didn’t want to hear any of it, so he just gave up (as did I when she spoke with me further into the conversation). Thomas and I both gave up trying to explain much of anything during that conversation because it was being misunderstood or misinterpreted or something.
Dr Castelliano said that for certain no medications showed up in his blood work before his admission to the hospital Sunday evening, but they all were showing up now (Wednesday) due to treatment there on the transplant floor. Also, we were still waiting on the rest of the results on the biopsy – still, two days later! Remember he showed both cellular and humoral rejection when he was in the hospital last time. This time, the biopsy was showing acute cellular but wasn’t coming clear on the humoral. If he’d had humoral, as well, he’d have had to have come back to the clinic three times a week for a series of plasmaphoresis therapy treatments. The biopsy and ultrasound did show some mild fibrosis but nowhere near as bad as anyone had suspected; this is good news!
Which brings us to Thursday.
Thursday, his creatinine had dropped down to 8.7, but Dr Hundley said it may never go down any further and told us not to get our hopes up. He said that when Thomas does go on dialysis, there’s a lot of things he has to consider. He’ll have to be 100% compliant with his meds, his clinic and dialysis appointments (and treatments), and have to go on a renal diet. I said, “Thomas, this means, if you want your McNuggets, you’ve got to go out right now and eat as many as you can, because you’re not going to be able to get them later.” Dr Hundley agreed. Dr Hundley said that Dr Shah would be visiting with us during his clinic appointment Monday (today) to discuss the fistula and all that happy stuff – what it is, how it works, and all that. Also, his medications were swapped around again. They’ll be swapped around again when dialysis starts.
So he was discharged, and we packed everything up and walked out to the bus stop. We had a bit of a wait, but that was okay. Thomas called people who needed to know so they could get a plan in place for picking him up at my apartment later in the day. Turned out that his uncle Danny came to pick him up after work. But nobody took Thomas to Mt Vernon so he could pick up clothes (all he had in his bag were pajamas) and his medications; so he didn’t have those Thursday evening or Friday morning. For the record, he did get to Mt Vernon to pick up some stuff Friday afternoon I think it was. Also for the record, after standing there preaching at him all day Tuesday that he has to take care of himself and that he has to take his medications, not going to pick up the stuff he required was a really shitty thing to do.
Now we’re up to today. Monday. November 14.
He weighs 153#, and his blood pressure was a little high – it came in at 156/80. He still has 9% total kidney function, and that’s likely never to change regardless of treatment. Dr Waid said Thomas definitely still has ‘significant ongoing acute cellular rejection‘ but that the humoral stain was ‘inconclusive’; in other words, too close to call. His creatinine had dropped down to 5.6 somehow. We were all surprised, even Dr Waid. Again, he told us not to get too excited. He didn’t think at this point that the kidney can be salvaged given its history over the last four years. He said he could see dialysis starting within two to three weeks.
Thomas kind of made a face, and I asked, “Thomas, how do you feel about all this?” He shrugged. I said, “You feel ‘whatever’, then?” He said, “If this is what’s got to be done, then that’s what I have to do.”
Dr Waid explained it takes a fistula six to eight weeks to be ready to use for dialysis. Dr Shah said they can insert a dialysis catheter (this is what I meant when I told him about looking like he was driving nails up his arms) as a temporary thing until the fistula matures enough to use. They said the vein mapping they did Thursday morning didn’t give them the information Dr Shah needed to get the fistula done – he said he needed measurements and all he got was a note saying Thomas has ‘normal veins’, which made us laugh because he has my veins, and they’re awful. (the vein mapping is simple – all it is is an ultrasound of the veins in one of your lower arms, which is kinda cool, considering.) So we went upstairs to the vascular lap and had the mapping done again, and it took a whopping fifteen minutes (counting checking out of the clinic, getting on the elevator and going up one floor, and giving the receptionist Thomas’ lab order).
He comes back to clinic on the 21st at 10am. Then comes back to clinic on the 29th for the fistula surgery (very simple). I don’t have a time on the fistula surgery yet; they have to get that scheduled for that morning then call and let us know the time. I look for him to have a clinic appointment on the 28th as well, given how everything has been going so far. Dr Shah said that after he does the fistula, Thomas won’t be able to carry, lift, push, pull, or anything like that. Too, he won’t be able to get injections or have blood drawn out of that left arm anymore, either, because they have to ‘save his veins’ as well as they can.
So that’s where we are right now. More news as it comes down the pike.
Today his blood pressure was running more toward normal – 132/76, which, well, is more normal for me and for him than what it was running. Yesterday (Monday), for example, it was 107/53. However, his creatinine level just seems to keep getting higher. This morning it was 9.2. We found out yesterday morning that his total kidney function (all he has is his transplant, for those who don’t know) is down to 9%.
We thought we were going to get the results of yesterday’s biopsy back this morning, and the medical team was certain we’d have them by noon, so we could all sit down together and make some kind of plan that afternoon. The results finally came in somewhere around 5 or 5:30. He’s still in acute rejection, just like he was when he left the hospital back this time in October.
I had to leave at 7:15, and they were getting ready to start him on his first round of Salu-Medrol. This is the drug I was talking about on Halloween, the one that Dr Hundley said we could try but may not do anything more than a sugar pill at this point. Also, I waited as late as I could, but they were supposed to come in some time tonight and start the vein-mapping for the fistula insertion. So when I go in in the morning, it may already be inserted or may be ready to insert. I don’t know yet. I’ve not talked to Thomas – and as soon as I finish this post, I’m going to bed.
As always, Dr Hundley laid it all out on the table. Someone in the room – I don’t know who; I was surrounded by undiluted Dillon from 10am until 5pm – asked if there was any alternative to dialysis at this point. After I snorted – because he and Thomas and I have had this discussion many times since September 15th, and we know – Dr Hundley said, “It’s dialysis or death. It’s Thomas’ choice at this point. That kidney might last two to three months, or it might last six months to a year without dialysis. But without any medication and without dialysis, it might last two to three months.”
So, my plan is to meet with me and Molly and Thomas tomorrow and see what we can do about planning a living will and all that other happy stuff. Thomas is over 18, everything is his decision, and everything should be his decision. At this point, anyone/the state getting guardianship would be a pointless act, a waste of time. By the time everything went through the courts, Thomas may or may not be here any more. That kind of thing takes six months to a year. And even then, there’s no guarantee that guardianship will/can/should be appointed at the end of it all. So unlike the Dillons, I’d rather sit down in a calm, peaceful manner, explain everything to Thomas so that he really understands what’s going on, and then present him with the appropriate paperwork and see that he gets help filling it out and getting it properly filed. I think everything about this should be his decision. I know I would want it to be mine.
More news as I get it. As always, I’ll be tweeting from the bedside at the hospital.
Well, somehow Eddie had a conversation with Thomas last night and convinced him that he needed to come on today and admit himself into the hospital, that he’d made a mistake by not doing that on Monday when he should have. So Eddie drove up from Cumberland County and brought him to the ER and UK, and I met them there. We explained that the transplant team had wanted him admitted on Monday morning, but that Thomas was scared or upset, or both, or something and signed the AMA and went home – and then Eddie calling last night, etc, etc, and boom, there we were.
Eddie couldn’t stay for personal, family reasons, but that was fine. He got Thomas up here, and that’s what counts the most, I think.
And the doctor intern came in and talked to us, then the ER doctor-doctor (who was the same doctor who took care of me in January and who asked me how I was doing now LOLOL), then one of the transplant team came down. Then another of the transplant team, the one on call, came down – and it was the doctor who’d wanted to admit him Monday morning – Dr Hundley – so that was good. While all this was going on and going back and forth, they drew copious tubes of blood, took Thomas’ vitals (and gave them back), had him pee in a cup, you know all the usual stuff. I wasn’t there when they got his blood pressure or his weight, so I can’t record that, yet.
Thomas said he was hungry, so they ordered him something to eat.
And while we were waiting for that to come, the ER doctor came back in and said that Thomas’ creatinine level had almost doubled since Monday morning – Monday morning it was 4.8.
And by then it was time for me to walk out – the ER is a maze and massive – and go to the restroom, and walk back around to the lobby – the new UK Hospital is a maze and massive – and down the long corridor and up the street to the bus stop. I had to get on the 8:06 bus so I could get home; Lextran stops running on Sundays at 9pm. No choice but leave unless I’d wanted to spend the night in the hospital, which I don’t want and wasn’t prepared for.
I hadn’t even gotten halfway down the long corridor when my phone went off with Thomas’ ringtone. I thought maybe I’d left something or he needed something real quick before I got gone. No, he said, “Mom, you should have stayed five more minutes.” I said, “Why? Is something wrong?” He said, “Yes. I’ve lost my transplant. I don’t understand real well what the doctor said, but I lost it.” Well, in this part of the hospital, there are benches built into the walls, and thank the gods, but I was right around the corner from the chapel, which was empty, and I went in and sat down. He said, “They said there’s no chance in saving it this time, so I don’t know what’s going to happen.” I said, “Thomas, yes you do. This means you’re going to have to go on dialysis for the rest of your life. You can live without kidneys, but you’ll have to go to dialysis.” He said, “I don’t know what that means.” So I explained it to him and told him to ask his medical team; they could explain it more. He said, “Well, that’s a bunch of bullshit.” And all I could think was, You knew this was coming. You’ve known that this was what was going to happen if you didn’t take care of yourself, and now it’s too late to do anything about it.
I asked him, I said, “Thomas, do you need me to run back to the desk and tell them you’d like to speak to a counselor or the chaplain or something?” He said, “No, I’m okay right now.” But we were both crying and totally not okay. I asked if he was sure. He said, “Mom, just let me handle this right now. We’ll figure the rest out in the morning.” I said, “I’ll leave my phone on all night, so you call if you need me.” I told him I couldn’t rush down there before 6am (that’s the first bus inbound), but if nothing else, like Kathy said when I called her later, we can sit on the opposite end of the phone and listen to each other breathe for company if it comes to that.
So that’s where it is right now. We’ve called just a very few people. Because there’s no news, really, to give anybody. I’ll know more in the morning after I get there and see his medical team and stuff. Jane is coming up from Liberty at lunch tomorrow. Right now, Thomas is talking to people and friends and family on the phone, which is good, and I’m glad of that (he’s been making and taking calls; so that’s good).
I’m going to spend as much times as I can at the hospital tomorrow. I’m broke as a church mouse, but I’m taking a pocketful of change and some snacks out of the pantry. I’ll be able to be reached by text on my phone – but it’s not a smartphone, so I can’t surf and stuff like that. I can’t respond to facebook or to twitter – although I can send out tweets to Twitter, I can’t answer them. My phone makes and takes calls and makes and takes texts and takes and makes and sends pictures and videos, but that’s all it’s capable of. No internet. No apps. No nothing like that. But I know I’ll be sending tweets just like I have every other time he’s been in the hospital – I just won’t be able to respond to them until I get home tomorrow night, or whenever.
I’ll post/tweet when I can, as I can.
Thomas went to the transplant clinic at UK Hospital today, and the news wasn’t good. None of us expected it to be, either. But it’s still depressing.
He looks bad. He’s lost more weight. His skin is dry and patchy. He shakes like an old man. And where he’s off his Celexa and Abilify, he’s moody as all hell and talks on and on like someone’s wound up a windup key in his back. His blood pressure was 173/73. His creatinine level was back up to 4.3.
The medical team wanted to keep him, admit him to the hospital. He flat out refused. The doctor even offered for him to come back in the morning or Wednesday morning. But he still refused. So he goes back on the 7th for another checkup. He walked out of the clinic at one point but came back later when he realized I hadn’t gone after him.
What the medical team want to do is try another anti-rejection drug and then do another biopsy on the transplant. They’ve made it abundantly clear that this may or may not do anything. But I said it’s worth a shot. If it were me, I’d do it. Thomas said it’s not anybody but him, and he doesn’t want to do it. He said, “I’m done. I’m just done.”
We all talked about dialysis, again, but he said he didn’t want that either. The medical team explained that’s exactly where he’s headed – if he makes it that far. He said he didn’t care.
They had him sign the “leaving the clinic against advice” form before we left. They also said that if he changes his mind between now and Monday that he can always come pick me up and go to the emergency room – he can be admitted straight from there.
So this is where we are right now.