st jude

So I was walking through Kroger doing my grocery shopping yesterday morning and looked to my right and was in the Hispanic section. I bent down to see which labeled candles they had in stock – it seems to rotate – and saw St Jude. My mind went ping! It’s like I told Preston when he got home, my metaphysics moves in mysterious ways. If something jumps out at me and says, “hey look!” then it’s something I’m supposed to do. This has never let me down.

I tweeted this yesterday, “I just lit a candle to St Jude.” It raised quite a few eyebrows.

But it has to mean something that I saw the candle at the store and just happened to remember that St Jude is the patron saint of lost causes, right?

update on thomas’ medications / medicaid

Okay so here’s the deal with Thomas’ medications.

This whole mess started when I went to pick up his Abilify and Citalopram from our local Kroger pharmacy at the first of the month.The lady at the counter told me the total was $700. I had a small panic attack and am glad I don’t have a heart condition! I took the Citalopram and came home and sat down to order his other medications from Transcript as is my monthly sop. We have the same csr every month, so if she doesn’t answer when I call, I just ask for her since she knows Thomas’ particular case. Then she tells me his Niphedipine currently has a copay of $60 and his Lipitor has a copay of $55. I had everything else shipped out – copay on one medication was $13 which I paid for out of my own pocket and not Thomas’; the rest have no copays.

Continue reading “update on thomas’ medications / medicaid”

conundrum

I kind of fell off the face of things over the last week. Oh, granted I was on Twitter and Facebook, but that’s about all I had the strength for. It all started with a migraine last Sunday. I just couldn’t get it to die no matter what I did and blamed it on stress and pushed on. By mid-week, I realized I had the flu. Today’s the first day I’ve not had / kept an absolute pounding migraine. I still feel a little off to one side and tired, but that’s what flu does – and it takes a while to recuperate.

Meanwhile, Thomas comes with even more paperwork. Medicaid is still trying to say that they’re not Thomas’ primary insurer even though I called Medicare, Social Security, and Medicaid all three – twice – last week to get this straightened out. (I’m still angry that he lost his Medicare coverage; his disabilities aren’t going to go away!) SSI sent out a pile of paperwork that I received Saturday. I had a small panic attack when I saw it all. But it’s all pretty pat, and it’s stuff I could fill out in my sleep pretty much. I don’t even have to gather the documenting paperwork. Thomas signed a release form, and SSI will contact the medical professionals, etc, for the documents they need. Just pray for him that he doesn’t lose his SSI; if he does, he’s basically pretty well fucked.

And now for my conundrum.

I’ve been working on the rewrites of Midnight’s Heir for almost a year now. Submitting chapters here and there to my critique group. Making fixes. Taking out things. Adding other things. Rearranging things. Doing more research. Trying to get the blasted thing back together. I got the chapter about the school shooting back from the group some time ago and made a long list of notes and so on and so forth. I set all that aside and continued editing through the end of the book.

Now I have a printout for those edits, for book three (which has been skim-edited), and book five. And my mind is sitting here waging a battle with me about what I should be working on.

Just when I think I’ve gotten some ADHD symptoms under control, the Prozac has given me so much more energy than I’ve had before that other symptoms are going whoofuckingwhoo – partay!! I need to sit down and make a list of these things. Two lists – one of each.

I think part of the book problem is that my mind decided since the edits on Midnight’s Heir are technically finished, that I can just put it away and move forward. But I can’t do that. I have a pile of work to dig through. I have to finish up the research, get the edits tightened up, and get the whole mess retyped. And I think I’ll do that, but my mind will start in on, “You know you really want to work on those changes you thought of for book three!” And then Michael and Laurel will pipe up out of book five and be all, “What about us? Is our story chopped liver?”

So I get aggravated and dive into my Apex inbox and start reading submissions. Then I putter around the house and look for something to clean and clean it. Then I find a book to read and leave the editing and typing all piled on the coffee table.

It’s a vicious cycle, and I keep telling myself, “You have to choose to do something, and you need to choose to finish up book two before you go all insane and start in on book three again.” But myself doesn’t like hearing these things.

Lather, rinse, repeat.

remembering hugo

I was showing Thomas satellite images of hurricane earl (we’d been talking about the typhoon Tayler is experiencing in Okinawa right now) and was telling him how similar it is to hurricane Hugo the month before he was born. Earl is shaping up to be a monster and is on a similar track as Hugo – although they’re saying because of a high pressure system moving onto the Atlantic coast, earl will brush the coast on Friday morning instead of making landfall like Hugo did. This remains to be seen, of course. Patterns shift, etc, etc.

I was telling Thomas, too, about Sandhi calling after she got telephone service restored. She said, “We’re just fine.” They had a few trees down. But she also said that, “All the pecans that were on the trees in the front yard are now all over the ground in the backyard.” When she came in to see Thomas that November, she brought bags and bags of fresh pecans.

People like to tell me that hurricanes never affect Kentucky. This always makes me laugh. Hurricane Gustav brought us rain from Texas and hurricane Ivan two weeks later brought northern Kentucky and southern Ohio a world of hurt. I lost the pictures i took of the rains and winds we got from Katrina (this makes me very sad!). We had flash floods and winds from Opal in September 1995; and I remember that as being some of the coldest rain this side of Hugo that I’d ever been in (Katrina was much colder than Opal).

Hugo was a monster. I remember him so readily because he did so much damage and because I was so close to having Thomas at the time — in fact, when the rains came through Corbin, I went and stayed at Mommy’s for two days just to be safe and so forth. That and it’s not every day that Corbin, Kentucky, gets hurricane force winds and rain! (although we did get our share of tornadoes and the place still does) Pike County (in the v at the far-eastern edge of Kentucky) got the worst of it. I remember at the time they weren’t real sure just how far Hugo was going to come inland. But he managed to find a pass in the Appalachians and moved on through east of us.

therapy / adhd update

So I saw my regular therapist this morning and told her about the whole ADHD thing with Thomas’ psychiatric nurse. Her jaw hit the floor almost like mine dit. But we sat there and talked, and the more we talked, the more she was in agreement with the nurse’s assessment. Unfortunately, comprehensive care can’t treat ADHD – they can talk about it and guide you toward someone who can treat it, but they can’t treat it themselves. On the upside of that, I did go to Medicaid yesterday and got turned down as expected and went in and made an appointment so I can get started at Paragon Family Health. I do that early on June 28th – wish me luck; I don’t do day well; mornings are hell.

My therapist did loan me a book to read. I’ll have to run it back out there when I’m finished, but that’s okay. Attention Deficit Disorder in Adults: Practical help for Suffers and Their Spouses. It looks very useful. She also gave me information on how to contact the Bluegrass Chapter of CHADD, and I’m going to do that as well.

i very well may have adhd

I went in with Thomas and his nurse psychiatrist Friday for an emergency session (he’s been having some growing issues and we’re trying to head off a major meltdown). And we were talking about this and that, and then she noticed a look on my face and said, “What?” and I said, “I do that.” She whipped out two evaluation forms and gave me and Thomas both copies and told us to get busy. I scored twice what Thomas did. She sent me home armed with a long list of URLs to read and information to discuss with my psychologist next Friday – as well as stuff to watch for in Thomas over the next three weeks until we see her again.

What we discussed makes a ton of sense in retrospect.

Continue reading “i very well may have adhd”

current unos figures

Waiting list candidates 107,824 as of today 11:38am

Transplants January – February 2010 4,282 as of 05/28/2010

Donors January – February 2010 2,221 as of 05/28/2010

figures from UNOS

thomas’ first day at adt

He had a good time at ADT today! Just after he left, his day coordinator called to let me know they’re having a Mother’s Day dinner on Friday and invited me to come. Before she hung up, I asked her how he did and told her that before he left home this morning, he told me he was afraid he’d spend all day bored and unhappy. She said he did terrific! They had a good time. She’s from Campbellsville, which is about 20 miles from the farm where he was raised. She said, “So we bonded.”

They’re going to the Children’s Museum (Explorium) tomorrow.

She sent me home a calendar to hang on the fridge. They have activities for every day of the month. Like PuttPutt Golf, Chuck E Cheese, Shaker Village tour, Legends baseball game, grilling out at the park, visiting the Kentucky Horse Park.

And he was worried he was going to be bored??

good news du jour

Woke up to two missed calls and two voicemails on my cell phone this morning. Both from the same number. Both from Frankfort. The panic kicked in — what did I do wrong this time? So I called my voicemail and received the best news I could have ever hoped for.

Thomas’ SCL waiver was finally approved!! This means he’s been put on the waiting list for assisted living housing (among other things). The list is long, years long. But the woman I spoke with when I called back said that they are also ‘reprocessing’ his emergency SCL application. I should hear something back on that before the end of the week.

When I first heard her words in the first voicemail, I didn’t believe it. I got so emotional I couldn’t hear the rest of the message and had to end up playing it back three more times. (The second message just had further information / instructions for me.) But I have cried all day long. Good, happy tears. The tension has been rolling out of my body, and as a result I’m exhibiting flu-like symptoms. But I’m happy!!

I explained everything very carefully to Thomas. He’s confused and doesn’t completely understand. That’s expected. He keeps asking if he’ll be able to take his car with him when he does get a house. That’s one question I can’t answer. Everybody I’ve talked to about him keeping his car, they’ve all given me different answers, so that’s all wait and see. Personally, I don’t think he should be driving at all. But at the same time, he’d be crushed if he had to lose his license and his car. And honestly, he’s been doing a lot better with driving since he sold the truck and bought the Monte Carlo (now if I could find someone who could do repair work on the car inexpensively, that’d be terrific! :cough:).

He was approved for the Michelle P waiver last month. And after we got all that paperwork done and he decided which programs he wanted to participate in, we found out that even though he got the approval for the waiver, he has to get approval before he can start any of the programs. I keep telling people, it’s like working with and waiting for the Redundant Bureau of the Redundancy Bureaucracy. But I think once he gets into the programs and is able to start participating he’ll be just fine.