Sunday, December 30, 2007

Moving right along...

I hope your Christmases were all wonderful: I am trying to take it easy in an attempt to recover from the flare (Is it one long flare now? or a million little ones? I honestly don't know - or care - at this point. I'm sooooooo over the flares, my friends.), but between Christmas, our medical chaos, the birthday Clump and other assorted nonsense, I'm not exactly getting much recuperating done.

To be honest, I am sick of thinking about everything. About me, about my grandmother, my aunt, my brother, his kids, my mum, any and all of my sisters.... just the whole dang thing. I would like a long, extended vacation from all drama, but that does not look to be on the menu. And so, we deal.

And I have to say that coming here, reading all of you, well, it helps me to remember that I'm not the only one dealing... that we're all just taking our own tiny steps, getting through each day. And it's good to feel not so alone.

Looking forward at 2008: I'm not usually big on resolutions. I have trouble holding myself accountable for arbitrary things, and generally, if a change is necessary, I tend to try to deal with it then, not wait for the new year to roll around. (I don't always manage to do that, but I try.) So I don't usually do a list of resolutions, and I don't think I'll do one this year either, but I want to do something. I need... something. I want to say control, but that's not exactly it. I need... some, power, maybe? In my own life.

IDK, exactly what I am trying to say. I feel so... swept away. Like I have so little say in what is happening in my life - from my illness, to where I live, to how I spend my day. To the illnesses of the people I love, to how other people's actions and behaviors influence me, to ... just, so many things, large and small. Time is passing, days and months and years, and I feel: stuck.

Not always, not every day and in everyway, but tonight, and lately... it feels overwhelming.

And so.

And so, I'm thinking of adopting the very wise idea I first read about at But You Don't Look Sick. Spoon Theory author and website founder, Christine Miserandino talks about picking just one word: a theme for the new year. It's an achievable and encompassing goal, to my way of thinking. It allows for both specifics and generalizations... a word that has meaning to me and can be easily remembered when I am faced with something that I feel like I need to change.

Of course, now I need to pick a word: a keyword that will help to guide me through what will most likely be a trying (and downright difficult year). I've got a few words rattling around in my head tonight, I'm going to let them simmer a bit more, and then settle on one.

Meanwhile, I'm interested to see if you all are resolution-ers, or if the start of the new year is just another day of you.

Thursday, December 27, 2007

Hey everybody!

I'm totally out of it, or at least I'm predicting that I'll be totally out of it, based on previous experience, so I'm writing this now to post later.

I've signed up to "Whore My Loot!" , but if I'm posting this as an alternative, it's just cuz I'm not feeling up to taking pictures (or typing... or probably doing anything except staring into space and remembering to press the "post" button). I'll get around to my own, received loot later, but how'd you like to see what I gave out this year instead?

I'm kinda proud of a lot of my gifts this year: having used my good sense & not spent big time $$$; having gotten very specific and individualized presents, and having discovered the joys of Esty, I really felt like this year I did particularly well.

So here's some of what I'm planning to give tomorrow (or... rather, have given and been exclaimed over!)

I spent the year picking up bargains on DVDs for Older/Only Brother, of movies that we'd enjoyed growing up. Here's a few:

For SisterJ, I got a print of an angel statue, sleeping:

And a print called "If Humpty Dumpty was a girl" from Esty artist, the Dreamy Giraffe, whose artwork I lurve...

So much so that I also ordered:
For Youngest/Only Niece:

For Her mama, STB Sister-in-law:

(Ahem... I may have also kept one for myself... ya never know.)
I wanted to keep SisterK's present for myself, but I bravely wrapped it up instead:

Isn't it gorgeous? It's also from Esty, from Little Dear, totally droolworthy prints, I promise.

Lil Girl/Only Niece also got the latest adventure of her favorite animal:

College Roommate/Best Friend got a framed photo of her daughter & Lil Girl, having a blast over the summer:

And SisterCh got yet another Esty find, a Monopoly necklace. Monopoly is her favorite game... it's kind of an obsession. So, hopefully she'll love this too:

There's more, but it's Christmas Eve and I'm still wrapping, so I'll type more later. Since I'm meant to post this on the 27th, I hope you all have had a fabulous, peaceful holiday.

I should be checking in soon.


Sunday, December 23, 2007

Dear Shoppers -

You may not be aware of this, but that roll of wrapping paper? Is right at neck level for individuals in wheelchairs. Who may also be trying to shop. And who would rather not be poked in the back of the neck with your purchases.

It would really help me out a lot if you took the time to notice that, um... hey, you have a big, long tube sticking out of your cart.

Like a lance.

That is aimed at my face.

And I would prefer it not to make contact with that face.


I realize it is just wrapping paper, but you are not leisurely strolling through the store, setting a snail's pace so that the roll barely grazes me. No, you are intent. You are on a mission to possess something that the store is probably already out of anyways, and you must get to where it is hiding, RIGHT NOW. And so, the force with which your festive cardboard bayonet pierces me is surprisingly strong.

And yes, I am taking into consideration that I have a very low pain tolerance level, but I also submit that anyone would be, at the very least, uncomfortable with all these dangerous weapons encroaching on them.

Also? Should your wrapping paper lance make contact with my body, the appropriate thing to do is not to glare at me as if I have somehow floated in, invisibly, in order to spear myself on your roll of wrapping paper. Surprised? Indeed, the correct response might be to ask if I am all right, or to apologize for ramming an object from your cart into my head. Just a suggestion.

Tuesday, December 18, 2007

MBS -- Tuesday?

Just because I really, really, really need some cheering up, let's see what the first Christmas picture to come up in my slideshow shuffle is... no matter what, I'll post that one.

ooh... it's a good one.

This is Older/Only Brother, Christmas Eve 1988, lighting the candles on the altar. This is one of his signature poses, the over the shoulder glance... For his scrapbook this year, I've got a page just of him doing it. (I'll try to take a picture today, but one of the reasons I need the aforementioned cheering up is that my stupid printer is not working. At all: it takes a piece of paper, immediately tilts it, then proceeds to tell me there's a paper jam. You think?? It's cuz you're eating it crooked! :Sigh:) Anyways, he was an altar boy for a number of years. Back before our Catholic churches allowed 'altar servers,' and there weren't that many boys in our neighborhood. Between that, and the fact that we live directly across the street from the church, he served at a lot of masses, got the pick of assignments. This is right before the children's Christmas Eve Mass, 1988, he's 12, I was 9 and in the pagaent as... probably a non-speaking angel that year.

He's a cutie, and I gotta say that Lil Girl and her big brother do have so many of his mannerisms, it's kind of amazing.

Alright, that kinda worked... I'm going to go curse at electrical equipment in my room. And hopefully take a shower, cuz we've got Lil Girl tomorrow, and I know it ain't gonna happen then.

Off I go...

Monday, December 17, 2007

MBSM: A Christmas Past.

Wandering around and seeing all the My Best Shot Mondays is a real treat for me, and pulled me (at least partially) out of my funk today. So I'll share a MBSM with all of you, of a happier Christmas..

Here's me, Older/Only Brother, & Oldest Sister/SisterS, Christmas 1984:

We're laughing at something crazy SisterJ (then almost 2) was doing, but I can't remember what it was. This was the year of the fake Cabbage Patch Kids - the kind with little bumps on the sides of their noses that looked like warts. The kind that you bought in pieces - heads, arms, legs, and trunk, and then assembled yourself. Trust me when I say that finding your grandmother's stash of doll heads by accident one year is plenty freaky, no matter how old you are.

Hey, this is pretty fun: I think, due to the cheering up aspect of this whole thing, I will try to do another one tomorrow ---> there's certainly plenty to choose from. Maybe I can find the one where my Dad is ready to punch out Santa, or Santa on crack, or find a year with authentic Cabbage Patch Kids... I know they're all here.

Sunday, December 16, 2007

Oh people...

I really feel like, if I were happening upon this blog, I wouldn't believe half of the stuff I write about. I just retyped it all here, all the crap and confusion, all the chaos and clusterf#%^s, but it made me physically ill to see it all typed up again, all at once like that. So I erased it, wishing that I could erase it all from my mind, my life, just as easily. If only.

Today is Older/Only Brother's 31st Birthday. He has not been "the best big brother a girl could ever hope for," because this is not a made for TV movie. No, this is real life, and sometimes, he really sucked: He made fun of ever pimple I ever got, and teamed up with one of our cousins to christen me Moo-Cow. He used to make me play sting with him in the schoolyard near our house, even though (or maybe because) I was a sports equipment magnet and would wind up getting hit in the face, or the back, or the neck with the ball and would walk around for the entire summer with round bruises showing on every bare inch of skin. He is merciless; I am "overly sensitive." He's a master manipulator, and has taken advantage of me, at times. He had his own room, while three of us girls (sometimes 4) were stuck together in another. He almost never remembers to call when he says he is going to, or people's birthdays. His temper is legendary, still, and he once went through a period so dark he thought we'd all be better off without him, and did something I don't know if I can ever fully forgive him for.

But he's my big brother.

And I love him.

Because he is also an awesome guy.

Because, he used to let me 'help' him sort his baseball cards... and resort them. And sort them again. Because he was the first one of my siblings to understand just how much it sucks to be sick all the time, that I wasn't faking, that he really didn't get it (and probably never would), but that I needed him to help me out. Because even though he disagreed (maybe still does) on my position towards our father, he stopped trying to convince me of how wrong I was, when he realized that it was what I needed him to do. Because he trusts me to take care of his kids, and knows that I love them with all of my heart, just like I love him. Because, when we were little, he would drag me around behind him, in a laundry basket. Because I gave him a hernia. Because he's trying to be the best father he can, and growing up and accepting his responsibilities, and making me proud of him, every day. Because he sat through recitals, even if Mum made him. Because he's strong and doesn't see it, because he's smart but sometimes forgets. Because he puts his finger out like ET so that we can 'hug.'

So, when the phone rang from his (soon-to-be)in-laws place early Friday morning, I just thought that it would be him, asking us, last minute (AGAIN!!) to watch Lil Girl. And I was less than happy with that thought, but rolled over to get the phone anyways. And heard from his MIL that his job had called and told Soon-to-be Sister In Law that he'd had a(nother) seizure. This is his second seizure, ever, as far as we know.

His first happened in early June, and he was diagnosed with a seizure disorder, which he didn't believe he had (since he was also dealing with a pretty serious painkiller addiction, and was mixing them with his RX drugs, so this was thought to be the most likely cause of that episode). However, they did an EKG and put him on Depakote, and he was fine. But on Friday, he had a much less serious seizure, and was taken to the ER, and they found that his Depakote levels were ridiculously low. So, they doubled his dose and said that he needs to be more religious in his medication taking.

He's ok, he's fine now - a little achy, a little freaked out, because he honestly didn't think that the seizure disorder thing was going to be a real issue in his life, and now he has to rethink that. It's a pretty frightening proposition, you know, when you realize that your body isn't really under your control. When you start to think that whatever you've got, it could be with you forever. It probably will be with you forever. And now you've got to deal, you've got to cope.

I have to say, though, I'm getting really sick of coping. I'm getting sick of answering the phone to some new disaster, major or minor - "Someone mangled my driver side mirror while I was in the house;" "The basement refrigerator stopped working - no wait, maybe it's just unplugged - no, it's definitely dead;" "I presented your case at a health conference of immunologists - 2000 of them, and they were all amazed, but they didn't have any concrete answers for us!" I'm getting sick of having to type out the horrible things that are happening, of having to remind myself of how much worse things could be.

And, they could be So. Much. Worse.

Older/Only Brother is fine today, on his meds.
My aunt is improving enough that they let her use a walker to get to her in-room bathroom once today.
My Nana is being stubborn because they want to put a feeding tube in, just in case, while they do the radiation, but doing the radiation gives her an 80% chance of remission.
My cousin's twins were born on Monday, almost full term, and a respectable 4.5lbs and 5.7 lbs. Yes, they're still having trouble with feeding, and we haven't been able to see them because they're keeping them in the NICU, but they're alive. My cousin came through the delivery ok, is up and moving again.

Honestly, everybody is doing as well as can be expected for their own situations. And I am wholeheartedly glad and excited about that.

I would just like for there to be no more situations, if that is at all possible.

I am determined to write/post something uplifting soon... this blog is not here to depress me or all of you, and I could use something new and different... maybe even some pictures!

Tuesday, December 11, 2007

Ok so here's the thing

I didn't mean to write this post about how much you all mean to me and then totally disappear. Things got a little heavier around here, and trying to hold up my end of things has been ridiculously difficult for me, so something had to give. I'm SOOOO behind in my bloglines, I'm afraid to check them. I have been following a few blogs who's htmls I could remember on my own, but it's mostly been quick check-ins, just to make sure everybody's doing ok.

Which is also what this is: Checking in here, with all of you, so you know that I am ok, and I know you are ok. Well, ok may be stretching it a big, but I'm definitely hanging in there. Flaring seems to be my constant state, just lately. Stress, infections, cold weather: sooo not helpful. Nor is trying to step-up & help out more...that is really one of the hardest things, wanting to help SO MUCH, and only being able to do this much.

Brief update on family situations: Tomorrow is Nana's radiation consultation, and we'll find out her radiation schedule. The other night she choked on her medication (she's supposed to take them one at a time, but forgot), and literally stopped breathing right in front of me. Thankfully I was not alone in the house with her, because I screamed for my mum while franitically trying to figure a way to heimlich her while sitting - I was trying to get her to bend over the back of a chair... but it was forutunately unnecessary, as she threw up the pill (and quite a bit more) just as I got her to stand. This damned cancer is in her throat, it is a rather large mass, and it is obviously getting in the way of important things. I will be so grateful when it is no longer there, and am cautiously reassured by what her doctors are saying as far as how treatable this is.

My aunt is improving slowly, but we'll take whatever we can get. She still weighs under 100 lbs (this is a guess, but I would say about 85lbs): She is 5'7", naturally slight, but this is majorly different. She's starting eating again, and they're weaning her off her feeding tube. So, that's good. She's not 100% back, mentally yet, but that doesn't mean that any damage is permanent. She's had some adverse reactions to drugs, so those could be contributing. Either way, it's nice to have her be able to hold short conversations, to know that she recognizes me again.

The PUS continue to terrorize us all, and I am so over them. I'm trying so hard to ignore their acts, but it is hard. I just spent two days on the couch (on the other side of the house) when Mrs. PUS decided to pour gasoline in the snowblower - right outside my room. Mr. PUS continues to campaign to get Nana to change her will, her medical proxy, her ... everything. And to maniupulate her into seeing him as the injured party - to the amazement & detriment of us all. Including his critically ill sister & mother (Auntie E, Nana), his chronically ill niece (um.. me), & his completely overburdened sister (Mum). It certainly shows that he's changed and deserves the 'benefit of the doubt,' does it not? It is beyond my understanding why Nana can not see how harmful he is, and continues to insist on inflicting him/his beliefs on all of us... even to the point where Auntie E's husband has almost banned her from her visiting Auntie E, if she's so determined to bring him up. The whole thing makes me want to throw up.

And this has turned out to be not as brief as I'd thought, and, as usual, I feel better for writing it down.

Now it's your turns: Everybody good? Anybody got good news? I could certainly use some. Let me know what I've missed, if you get a chance.

Love, Me