Tuesday, January 28, 2014

Oh, so much, so manyies.

So what's going on in your brain these days, NTE?
Oh, so much, so manyies.

For example - I had a doctor's appointment yesterday (after taking a little doctor free time over the holidays, except for emergencies), and my new-ish primary care doctor - who I don't particularly like but originally signed up with because of his being in the same hospital as Zach, but is now pointless, because Zach moved to a new hospital - started things off on a lot of wrong feet. 

First, he and his nurse totally ignored my POTS diagnoses and commented positively on my low BP reading, even though my pulse was still sky-rocketing from the effort of getting to his office. Newsflash, doc: low blood pressure is not great for everybody, and it's particularly not great when your pulse is up near 145. 
Next, he started talking about somebody else's blood work, because he was looking at the wrong file on the computer. And his nurse tried to stick me with a needle AFTER she told me that she's been having a 'day when I drop everything'.  I'm sorry: no? No needles now, thank you, drops-things-a-lot.

 Then he started to extol the virtues of exercise - even 'any little bit I could manage' - while I was explaining how I didn't think my POTS issues were improving. Right, because all I need is yet another person telling me how I'm not trying hard enough. Particularly a person with a medical degree who should be able to read the report there on his computer (if he's even looking at the right one) from the cardiologist last month that warned that my heart issue were 'potentially life threatening if left unchecked,' and recommended 'one step above complete bed rest.' So, maybe starting a conversation about bench pressing (even if you are only talking about cans of soup or vegetables) is a tiny bit premature. Just saying.

Needless to say, it was quite frustrating to leave there with very little actual help, BUT - silver lining time - I have an appt with Zach next week that is sure to go better. (And by 'sure', I mean, please Dieties let it go better, because it will be my 1st appt at Zach's new hospital, and we all know that new people aren't always great.)

Continuing in the silver lining vein, however: My mom got a job! (Aside from her PCA-ing for me job, I mean) She completed a CNA course during the fall, and rocked the state licensing exam, and now she's got her first non-me job in I want to say 20 (?) years.  She'll be doing CNA/PCA stuff at a group home & in individual houses in a neighboring city ~ her orientation is Thursday, so she's not sure what her days/hours and stuff will be, and while that will be an interesting complication to have to work around re: doctor's appointments,  I am SUPER proud of her and I know she's going to be great.

Hopefully this will be more than just a money making opportunity for her (although, that's definitely not going to hurt) - I'm hoping it will help her feel more confident about herself and her skills, and really give her something that she feels proud about as well. These last couple of years/months have been difficult, and the next few months don't look to be conflict-lite either, so I'm glad she's got something to give her a much needed boost, right about now.

She also started telling people what's going on here - mostly the basics, that they're splitting up and we'll all be moving to separate places, at some point in the near future. There's a lot still that people don't know (mostly because even people who should care to ask have not thought to ask, and I know that that has hurt her as well), but I think just getting it out there to a few crucial people has been a relief for her. Some of the responses were unexpected - one sister started to ask if that meant that she would be dating, immediately squicked herself out and told her not to answer; UJ has offered for both of us to stay with him for as long as necessary, while my mom's sister told her that she was unable to loan her the money for a lawyer - even as she started talking about how they were going to remodel their house, so that stung more than a little bit. My brother, on the other hand, seems as clueless as usual: "I do not know what to do with that information" was his response. SMH - never change, Big/Only Brother.  But, aside from the kids, who don't need to know until it's actually starting to happen, I think most everybody knows, so some of the uncomfortable 'who knows/who doesn't' tension is at least drained from our (already preternaturally tense) conversations.

So those are two of my mind's trending topics. Others include: Sister who reads my blog, I love you, please call me;  What the hell do you mean it's already February this week;Oh My God, Gmail: Don't eat my e-mails and Seriously: I'm probably going to have to get rid of a lot of things if we're moving.

 Super fun!

What's on your mind, this gloomy Tuesday?

Tuesday, January 14, 2014

Look how much I am sharing!

Yeah, no: another two weeks have passed with very little word from me - unless you follow me on Twitter/Tumblr, and even there, it's mostly other people's words re-hashed. The reasons for not writing are numerous, at least in my head - ranging from the usual ('not enough hours in the day to accomplish all the things I need/want to do' combined with both 'active illness & post-holiday flare-up' and 'so few spoons it isn't even funny') to the restrictive ('everything I want to say will hurt someone if I say it, so I don't know how to say it' and 'everything I write is so depressing and if it makes me depressed to write it, who the hell is going to want to read it?') to the absurd ('but seriously: do you know how many episodes of Dr. Who I still have to watch?') So it's been pretty difficult to carve out a thinking space, let alone a writing space.

But I have promised more sharing, and more sharing it shall be.

First off, let me recommend, if you do have a Tumblr, that you follow me over there for some mostly illness related, gif-filled ramblings. I'm a little bit upset that I am too old to be in school now, when I imagine I could find an appropriate gif for any single homework assignment (and that I could bs my teachers into accepting their validity as objective tools of measuring my learning). There is a gif for every occasion, I have come to learn, and it is a little bit disheartening to me when I am interacting with actual people in real life and can not just open up my gif folder and show them that I understand exactly what they mean. I have a feeling Google is probably working on that though. (Dear Google: work on that INSTEAD of Google+.  Nobody likes Google+, because you try to force us to like it and incorporate it into everysinglething we use. It is not ok with us. Just let it die already.

 See what I mean about the gifs?)

Secondly, in an effort to keep from writing yet another truly depressing post about the current state of my family let's just keep it under a paragraph and say that things here are pretty sucky. In a major way. For a lot of people. But because we're in kind of a holding pattern right now (for reasons that I do not understand, and therefore cannot explain to you), I can't figure out what to do to help myself or anybody else.  There's a whole lot of not-communicating happening, which is stupid (except for when it's me, of course), but also understandable.  I think my mother is afraid of what comes next, even though she knows it has to come, and is postponing it as much as she can by talking about the unreachable finances of the situation (which are valid issues) instead of the direct harm she is causing herself by not just bulldozing forward. I can't even say I blame her, because I could bulldoze forward about shit too, but really just don't have the energy to deal with the fallout. So: hellish holding pattern it is!

And lastly, for this morning anyways, some commitments.  After a few years of reading awesome reviews and interacting with some great people, I have signed up to participate in Cannonball Read 6, which is "a race to read and review 52 books in a year".  Now, if you've been here any length of time, you know I will read many more than 52 books this year, but as my sadly outdated Goodreads account reflects (Seriously: September? That's the last time I told you what I was currently reading? Ugh), I did not review nearly quite so many.  But I think it's definitely doable, and it fits in with my goal of sharing more parts of myself in different places, so I'm going to do it.  I'm also on the look out for a therapist who specializes in people with chronic pain (did you know there even were such mythical unicorns? I did not!), in the hopes that s/he will have some strategies that I haven't tried out that will help me moving forward. And I'm also trying to comment more, across the board. (??!?!)

This commenting thing is obviously not unique to me (one of my own commenters JUST left a comment saying she was trying to do the same), but it's something that should be so easy, and it's just so HARD.  Guys, I feel ridiculous!

Sometimes I feel like I have a good thing to say, but then I feel like a third wheel or something - especially if it's on Twitter, and two people I follow are talking about something, and I just... butt in - and I wind up erasing what I was going to say.

 Or I feel like, after reading all the other comments on a post, that all I could contribute is a "me too!" or "Agreed: what X said!", which feels like a comment not worth leaving. 

Other times I will spend long minutes - I do not mean like 5 or 6, but like maybe 20 minutes - crafting what I think is the exact right way to phrase what I want to say, and then chicken out before hitting the enter button.

It's so stupid!

I do not know why I am so intimidated by the commenting thing ~ all I know is that I often feel like I did back in high school, when I was at the edges of all the crowds, not unpopular, but never quite fitting in anywhere, and having to monitor my words and actions to an extreme rate, for fear of embarrassing myself.  I know this is all in my head - aside from spam, and one mean comment about 6 years ago, I never have had a comment that I wasn't Super! Excited! to get.  Not here, or on Twitter, Tumblr or Facebook (maybe Facebook - the people I know in real life are not always awesomesauce with the comments). 

But the general truth still exists that comments - even of the "me, too!" variety - make my day! And I should just get over myself already and hit that submit button.

So, that's how my January is going so far - how are all of you faring?  

Thursday, January 02, 2014

This year's word*

*This year will be brought to you by the word "Share"  - alternate, very Sesame Street-styled post title.

As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome.  I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.

What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.

Sharing the parts of me I generally keep well hidden - including being more honest.  Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling.  There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.

Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.

Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished.  It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer. 

Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.

Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships.  I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.

Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.

Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.

Sharing is ...

It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.

And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.

Ok 2014: Be nice to us.