introducing trudi, my dayplanner

Yesterday, on my way out to the laundry room to get the Wednesday wash done, I dropped my dayplanner into my bag and stopped to get the mail. Didn’t think anything about it as I’ve been trying to get into the habit of taking my planner with me everywhere, and though it was early, I thought I’d see if the mail had already run.

pic10161303

Why I thought I might need my planner in the laundry room, I had no idea. Like I said, I’m trying to make taking it everywhere a habit. So far, so good.

After I got the clothes in to wash, I sorted through the mail – sales papers, but I always go through them in case other mail got stuck in there somehow. I can’t say how many times we’ve almost lost/recycled/thrown away something important (tax returns, mail from Preston’s parents, lightweight letters, etc) because it’s been jammed in with the sales papers. And low and behold there were the Container Store planner stickers I’d ordered two weeks ago.

I spent the next half hour arranging stickers and taking pictures.

Love my divider pages! I ordered them from an Etsy shop, and the designer cut them down to fit my compact planner! The Hello Kitty stickers came from an eBay shop. I printed and cut down the menu sheet – and sheets that can’t be seen: “about this week” and an adorable “to do” sheet. There’s also a “right now” sheet I printed and cut down. (I really need to get a paper cutter!) The page sticking out the pocket in the back is from where I was going to get my yearly mammogram – they shut it down to consolidate it with the Markey Cancer Center on campus.

pic10161306

This picture is blurry; sometimes I just can’t get steady pictures with the camera on my phone. These are probably my two most-used tabs. The labels are from the stickers from the Container Store, and the divider tabs are from my Etsy purchase. For Projects, I created a “client sheet” for the editing and book reviews I do, so I can better keep up with what I’m doing for whom and when, payments and so forth (I don’t get paid for reviews; just editing). That section is a bit thin right now, but I’m taking November off for NaNoWriMo. Schedule is where my daily planning sheets start. For the rest of this year, I have the standard wo2pp that comes with an FC planner. (I have my pack of do2pp starting ready to go when I need it; I already have January in my planner.

pic10161306_1

Here she is from the top. The black piece is the top page lifter; I have one in the front and in the back. They didn’t come with the planner, so I ordered them separate before I ever thought about getting custom dividers. I may not need page lifters with the dividers, but this way I know my dividers won’t get damaged. Right?

pic10161304

pic10161305

I got the Blooms monthly divider pack from FC for the color, and they’re great. The borders are a little bit more pink than I care to have in my life, but I keep telling myself they’re “more pale lilac”. I stuck my monthly and daily Etsy stickers over the FC tabs. Again for the color. And they’re easier for me to find and to read. I really like having the daily stickers! Those will come in so handy at the start of the new year when I get to start working with my actual daily pages. The Santa is from a card I got from my sister last Christmas. (When you journal, you save bits and pieces of everything. I’m up to two boxes and five folders of ephemera from nothing this time last year!)

pic10161310

pic10161309

She’s a bit fat, but I have another planner due to ship next Monday. It’s still a compact, and the same model (this one had a defect with the closure), but maybe by the time it comes in, I can figure out what I really need in here and what I don’t. What helps is that this model (DayOne) can also be used as a wallet, so I won’t have to carry a separate wallet around!

pic10161307_1

Why did I name her Trudi? After noticing on the Planner Addicts group on Facebook that the other ladies name their planners, I boiled it down to a choice between Trudi and Priscilla. I’m not entirely sure why those two names came to me, but that’s what did. I asked PA for advice and got some really great suggestions, including Molly – which I’d have totally gone with, but right now she’s a character in my YA project, and I don’t want to get them conflated somehow. I thought I might go with Priscilla, but every time I picked her up, I called her Trudi. So here we are.

Why a physical dayplanner? I realized with my ADHD I needed something physical outside of my Outlook calendar, especially these days since I don’t leave Outlook on 24/7, so I’m not able to get my reminder pings (and I don’t carry a smartphone). With the ADHD (I have the distractive/inattentive type), I’m more visual, so need visual cues and reminders. Otherwise I’d forget my own name some days. I started by using a Moleskine daily planner in January and liked it a whole bunch. Over the course of the year, I saw all these beautiful, creative planners and wanted to be able to do more with my planner – including organizing it to suit me instead of how a book binder put it together for me.

I got to thinking about ring binders. I’d used one from 1997 to some time in the early 2000s. A tiny thing, and I don’t think Mead makes it any more. Fat Little Dayplanner. I still have the binder! I did some digging around and some research and thought about the planners anyone can buy at Wal-Mart but wasn’t sure that was the route I wanted to go. Then someone at either PA or JJ posted a link to an FC DayOne on sale for $9.95. I waffled for some time but decided I couldn’t go wrong with FC and especially not at that price, so I had some spare money and bought it and waited for it to arrive.

It arrived, and I went nuts customizing and organizing it. Buying dividers, stickers, tabs, post-its, and gods know what all else. A pouch to carry said stickers, post-its, and pens in, of course, but I’ve already almost outgrown it and have barely had it a month!

But I’m set on starting 2014 organized and ready to hit the floor running, as they say. With my head on, my shoulders back, and knowing what needs to be done and when and where I have to go and why. And so forth. That makes a huge difference in my life. I realized before I knew about the ADHD that I need a structured schedule. Daily. Even if all I have down for a given day is a list of household chores. (Speaking of which, I never ran the dishwasher last night. Oy! See?) The daily pages I got are divided up into an appointment block running from 8am to 9pm, which is perfect. There’s also a task list and a daily tracker (for whatever I need to daily track). The second page is more like a diary page.

When I get my January calendar all set up and start setting up those daily pages, I’ll take more pictures. With hope, it won’t take me two months to post again!

Now you know where I’ve been the last while! I’ve been eyebrow deep in dayplanning and organizing! Also, I’ve been doing a bit of writing again, but mostly on that front I’ve been doing the NaNoWriMo-Plano for next month. Which includes getting what manuscript I already have written (I write longhand) typed up into Word, so I don’t have to worry about that next month and get on with the actual writing again!

so this is where i am right now

pic06131029

This mess was on my dining room table this morning while I was trying to eat breakfast. This mess is what I’ve let my life erode into. And I hate it. The only thing to do about it is to get up off my butt and fix it. I did some of that fixing today but not as much as I should have. I at least got my dayplanner and Outlook calendar somewhat semi-reorganized. One step at a time, I suppose.

The hurrier I go, the behinder I get – Calvin & Hobbes

picked up my new glasses

new glasses

Picked up my new glasses from Wal-Mart earlier today. They’re very grap! Good thing I love purple! I’m hoping my optometrist has my contact lenses in stock when I see her again on May 17th, so I can pick them up. Then I’ll be all set! Yay!

thomas news – thursday october 20

The current news on Thomas isn’t good, but we new it wasn’t going to be. His clinic appointment didn’t go well Monday, and Thomas didn’t really seem to care. It’s almost like he’s built himself an alternate reality to live in – which isn’t good. The doctor said his creatinine had actually dropped from 3.1, which is where it was when he left the hospital, to 2.3. But the doctor also said that it could very well be that low because of the amount and strength of the Prednisone he was on in the hospital. He said this because no trace of medications came back in Thomas’ blood or urine. Again. Even though Thomas sat right there in the clinic and told anybody who’d listen that he’s not drinking alcohol, he’s eating right, and he’s taking all of his medications like he’s supposed to. They’re going to see him every other week for now; the doctor alluded that if Thomas isn’t going to take care of himself, then there’s no point in him coming up here once a week for a clinic visit.

Everyone keeps asking me how I’m doing. I just feel like I’ve been on an endless roller coaster ride – up, down, around, over, through. I was angry at first, when the doctor gave us the news of Thomas’ life expectancy that Monday morning while he was still in the hospital. See, this is why receiving a living transplant is so important. When someone receives a cadaveric transplant, that recipient’s life expectancy is automatically cut in half. Depending on the age of a living donor, a living transplant can last the recipient a full lifetime. You all know I wanted to give Thomas one of my kidneys and was turned down after all the testing because I’m not insured. Because of the way Thomas has treated himself over the last year, with all the news that’s come down the pike over the last month, I’ve been glad he didn’t get one of my kidneys – and then I feel horrible for feeling like that, for thinking such a thing. Thomas received a cadaveric transplant thanks to my lack of insurance. The young man who died and whose family donated everything that was possible to donate saved a bunch of children and blessed a lot of families. He was, if I’m remembering right, twenty-three years old when he died. We know he was in near-perfect health.

I saw my therapist on Friday the 1st, and we discussed my ADD/ADHD issues. With the Prozac and the other antidepressants calming me out, the ADD/ADHD was running loose and wild and making me do stupid things. Seriously. When I don’t stick to a pat routine, I do stupid shit. Like the morning I jumped the gun on putting a pantyliner in my panties – and got the process mixed up with putting on my socks and stuck the pantyliner on the bottom of my left foot. And, the way my brain works, I sat there staring at the bottom of my foot for several minutes trying to figure out what I’d done wrong. I told my therapist I have moments when I feel spastic but don’t allow myself to go spastic – I try to keep myself in control of myself, even when I’m alone. There’s other stuff I’ve done, too, physical and vocal, and we discussed all that, too. We were almost rolling in the floor laughing by the time I finished, and she made up her mind to put me on the lowest dose of Ritalin. 10mg twice a day. The first few days, I was a bit jittery, but nothing horrible, and I waded through it. And now I’m just fine on it. I tell people, “I can almost brain proper.” (Being able to make sense of the noise in my head goes a long way!)

The Monday we got all this wonderful news (the 3rd) – that Thomas’ expected lifespan had been cut down even further because he’s not been taking care of himself, that his creatinine level was probably permanently stuck at 3.1 (never come down but possibly go further up) for what time he does have left – I was angry, like I said before. Just angry. When I left the hospital, I stopped at the arboretum to take a walk. I needed to be outside, moving, and the weather that day was gorgeous. The kind of weather I wish we could have in Kentucky year-round. If I’d gone straight home, I think I would have just sat here and exploded. I had to get my head put back on right before I went any further. I called the therapy clinic to see if I could get an appointment with my therapist, but she was booked solid through to my next appointment (the 27th), so I decided to tough it out and wait, see what conclusions I could come to on my own. Besides, it wasn’t an emergency situation – all I wanted and needed was someone to look at me and tell me that what I was feeling was normal. it’s hard for that clinic to do a work in with me because I have to have at least two hours’ notice, because I have to take the bus over there. They can’t call me at 9 and tell me they have an opening at 9:30 and can I be there. By the next morning, I’d figured out I had no idea who or what I was angry at, and I told myself it was stupid to be angry without someone or something to be angry at.

I guess you could say I ‘simmered’ over the next two weeks. I don’t really know how else to describe it. I just know that I had to calm myself down and took it in stages. And I scrubbed our apartment. Ceiling to floor. One cobweb survived, and it’s still there because I never can remember to get it down when I’m up. The apartment got so scrubbed that there’s not much I’ve had to do to it this week, but I’ve done it all anyway. It’s driven Miss Kitty even further nuts; she can’t handle anything around her changing much at all. Through it all, I keep hearing Thomas saying it’s his life to live how he wants to live it and he’s going to do what he wants to do and if he lives, he lives and if he dies, he dies. Sticking your fingers in your ears and screaming, “LA LA LA LA LA!” doesn’t work, no matter how much any of us ever want it to or pretend it does. Closing your eyes and clamping your hands over them and screaming, “Not real!” over and over doesn’t work, either.

This past Monday, the 17th, Thomas sat right there in the transplant clinic and told anybody who would listen to him that he’d been taking care of himself right. That he’d been taking all of his medications on schedule, as scheduled, that he’d been eating right and otherwise taking care of himself like he was supposed to. He said he hadn’t been drinking and hadn’t been partying, etc and so forth. He said all this before and after he’d gotten his blood drawn, peed in a cup, had been weighed, gotten his temperature taken, had his blood pressure checked. His weight hadn’t changed, his temperature was normal, and his blood pressure was near usual – through the roof. His doctor asked him, “Have you been taking your medicines?” And he looked his doctor right in the face and said, “Yeah, I mean, no. I mean, I wasn’t before, but I am now. Every day, just like I’m supposed to,” and smiled that smile he’s smiled since he learned how to smile – the smile he uses to slay people with. The doctor looked at me as if I could confirm or deny, and all I could do was roll my eyes and shrug my shoulders. He told Thomas to come back in two weeks.

Then Kathy called while I was out seeing my eye doctor on Tuesday, and I didn’t get her voicemail until I got home – although I got her text messages on my way to Kentucky Clinic. Problem is, on the way home, my eyes were dilated, and I couldn’t see to use my phone in any way. Preston called me at one point, and I finagled around until I was able to answer it. Honestly, I’m proud of myself for navigating the buses and finding my way back to our apartment. For the record, I’m still blind and don’t have to go back again until April, probably to find out the same thing again. My eye doctor upped my Elavil prescription from 25mg to 50mg to see if that would help calm or settle the whooshing and throbbing noises in my head; it’s supposed to help me sleep, too; if it does help with the sleep bit, then maybe I can drop the Trazadone. I tried dropping the Trazadone when I first started on the Elavil in the spring, but my mind kept going at mach 10, so it was obvious I needed it to wind down enough to sleep.

So Kathy tells me when I talk to her that the female transplant doctor had called her, and Thomas’ creatinine level was down to 2.3, after all of us thinking it would never drop below 3 again in his lifetime. But she said it was probably that low due to the amount and the timing of the Prednisone they had given him in the hospital. Also, his blood and urine didn’t show any traces whatsoever of any medications. Again. That along with his unwillingness to take care of himself spurred the decision to see him once every other week for now. He goes back on Halloween. Kathy also said that Thomas has been going around telling everyone he’s perfectly healthy and can do whatever he wants whenever he wants and can drink all the alcohol he wants. I’d like to know when the doctor told him that because he and Dr Gedaly were never alone together this past Monday. If this keeps up, he’ll be put on dialysis. He’s not going to like being forced to sit and lay still for four hours a day, three days every week. He’s already told me it sounds like hell. I still am of the opinion that he should have toured the children’s dialysis ward at Cincinnati Children’s before his transplant; Jane was wrong in turning that down. Jane was wrong about a lot of things, but that’s a whole other blog post, or twelve.

Now I feel like we’ve all just come back to where we were in July 2007, when Thomas was so sick and every time the phone rang I had a panic attack because I knew there would be bad news on the other end of the line and I had nightmares about funerals. And at the end of last week, I’d come to some kind of strange acceptance to the situation, to Thomas’ attitude. I’m still struggling to figure out where the whole, “If I’m going to die, I’m going to die my way” attitude has come from. But it’s an attitude I have, too, when I sat down and really thought about it. I’ve said for years that if I’m ever in the hospital and am told I won’t ever be going back home, then I’m chowing down on a shrimp platter. I also have a living will; I think that’s important. I also think we all have a right to go out the way we want to. And maybe that’s where Thomas’ head is. I just don’t know.

Here’s the thing. Thomas may have the mentality of someone somewhere between nine and fourteen years old. But he can look at you and tell you exactly what medications he’s supposed to take, what dosage, what quantity, and how often. He can tell you exactly what he’s supposed to do and not do to take care of himself. Yet right now he’s just refusing to do any of it. I’ve long said that he needs a full-time, around the clock caregiver (he doesn’t want one; he’s refused one; he’s refused part time help; he’s refused any help). But apparently even an around the clock caregiver doesn’t work, because he’s learned how to be sneaky. I can’t explain how I felt that afternoon when I dumped all his medication bottles on my bed to sort through them and realized that some of them went all the way back to December of last year. He was still here with me then – he didn’t move out until the end of March. There weren’t any bottles for the month of April, and I think I remember Kathy saying she can only figure that he took his meds that month or that he had so many that she just never ordered any for April. But he had almost full kits for the end of December 2010 through the end of September 2011 (minus April). I wanted to cry. I was angry. I was pissed. I was sick to my stomach. I mean, here he had lived in my apartment and had gone into the kitchen twice every day to take his medications. It took me a while to figure out that he was going into the kitchen, rattling around in the cabinet, and getting a drink of water – nothing else. Apparently he’d done the same thing at Kathy’s when he lived there (end of March through the end of June).

The day he was admitted into the hospital, he told the doctor, before she went to get his room, “It’s my life, and I’m going to live if the way I want to, and if I live, I live, and if I die, I die.” And then he sat there on the bed after he was admitted and just blurted out, “I don’t matter, anyway. Everybody loves Tayler more than they do me. He always gets more than I do. He always has. Nobody loves me.” Out of thin air. No preamble. He just said it. And I couldn’t do anything but just sit there and listen. Every now and then he’d burst out with more on the same theme. And he didn’t care if he was in the room alone, or if I was in there, or if a nurse or three were in there, or what. He just kept right on going. Nobody dared tell him he was over 18 and could sign himself out and leave if he really wanted to. As the day wore on, though, I did tell him that if he was going to continue to treat me like shit, that I could leave and I didn’t have to go back. In fact, that’s something I found myself repeating several times through the course of his hospital stay. And I didn’t just say it, either. If he started acting like a jerk and treating me like shit, I’d at least get up and to out into the hall or out to the waiting room. Sometimes I’d ride the elevator down to the lobby and back to the eighth floor. One afternoon Kathy and I both were there when he started his crap, and I said my bit and got to my feet. He’d changed his attitude by the time I got to the door.

But it’s like he’s got it into his head that he doesn’t have anything to live for, that he never has, and that if he’s going to die no matter what he does, then what’s the point of doing anything but living what life he does have. Like I said, I can kind of understand the attitude. I really can. If someone told me my life was being cut short, I’d do what I could to make the most of what I had left. And I feel like that’s what he’s doing. Tayler says, “He’s being a dumb ass,” and in ways, yes, Thomas is. At the same time, Thomas is in his own mind and in his own way doing what he thinks is the best thing for him.

Kathy’s found several alcohol purchases on his checking account. But like I told her, if anybody asks him about them, he’ll just say that he was buying for “a friend”. His 22nd birthday is coming up on the 28th, and he told me he and his friends have a big party planned. He said, “It’s nothing. Just pop and cake.” And I just bit the inside of my mouth.

So I guess we’ll see what we find out at his next transplant clinic appointment. Probably just more of the same. That’s what I expect. And from here, I expect for things to get nothing but worse.

fun with medications!

I had an argument with prescription fulfillment with my ophthalmologist just a bit ago. I was supposed to see my doctor at the end of June, but the appointment was changed to October. My migraine prescription ran out last week, and I thought I was going to be okay without it; I’ve done so well. But no. So I called to get a new prescription, and the woman on the other end of the phone said, “Well, that’s not a prescription an eye doctor would normally write.” I said, “Look. Dr Kedar is an eye doctor in your department. He wrote my original prescription in April. It’s for migraines.” I explained about the appointment getting changed, etc, etc. She didn’t say anything. She was just really very quiet. She took down all the other information she needed and said she would give me a call back. She called back about fifteen minutes later and said, “I faxed your new prescription to your neighborhood Kroger.” I said, “Thanks,” and that was that. Sheesh.

my eyes and i went to uk yesterday

My appointment at UK Opthalmology at Kentucky Clinic was yesterday morning at 8:30, so it was another getting up at 6am day – third in a row – and of course rain was pouring from the sky in sheets. I kept an eye out for ducks wearing raincoats on my way to the bus stop! At the clinic, I went to the information desk first to make sure the eye clinic whose location I’m familiar with (we walk by it on the way to Thomas’ internists’ appointments) was the place I was supposed to be going to. And it was, so I headed upstairs. I didn’t wait long – I barely had time to fill out the requisite information sheets before I was called back.

Continue reading “my eyes and i went to uk yesterday”