Sunday, October 31, 2010

Some anniversaries I may have forgotten to mention

Well, that was that: October. I can't believe yet another month has come and gone, when I am still stuck somewhere back around April, hoping that the rain will finally stop and spring will bloom. In reality, we're preparing for the cold all over again, and hoping that the heavy snow they are predicting for this season is inaccurate - As usual, I am way, way behind.

I've been so busy here at Grandmother's house that I haven't written about my sick-a-versary, or my blog-a-versary at all, but trust that I have forgotten neither. This is my 16th year of being sicker than I'd like (of course, anybody who's sick at all is, most likely, sicker than they'd like), and the anniversary of that first debilitating, out of nowhere and never gone back to nowhere illness still strikes me hard. Because one day I was fine, and the next day I was not. And I haven't been since. It's hard to remember, even when things are going ok-ish for me health-wise (as they are now), just how different my life became, and how suddenly.

But, like I said, this year's anniversary finds me with no new major downturns in my health, so that is really all I can ask for at this point. I'm grateful for the level of activity I've achieved, which, at certain points in the past I would've never thought I'd attain. Even if they're still significantly below where I'd like to be (say about 70% below where I'd like to be), any progress is good progress, and I think that this past year I've been most surprised by just how badly you can feel - how much pain or exhaustion or stress your body can be feeling - and yet you still get through the days: It seems a lesson I am loathe to continue learning...especially since I am constantly hoping that this - whatever this may be: pain, hours without sleep, post-surgical infections - is as bad as it can possibly get. Since that is apparently never true (it can always be/get worse), I'm glad that I keep meeting the challenges in ways I never would've thought or expected that I could.

But I also have to think of the positive things that have happened in my life over the course of the past 16 years, and know, that if I had changed this one thing - my illnesses and all of their various effects - I would have changed everything else. And so, holding the little people in my life as close to my heart as I do, and knowing how much stronger some of my relationships have grown because I've had the time to devote to them, and thinking of all the ways I wouldn't like to be any different than I am right now, I have to be glad that we can't change our past, since the temptation might have proven too much for me, and where would I be then?

I also missed acknowledging another pretty important anniversary: The end of September marked my fifth anniversary here at Never that Easy. I think, for me, whenever somebody says "It's been X number of years since Y", I always think that it has simultaneously been a much longer time than that and a much shorter time. It certainly feels as if I have been writing here for much longer, because of the people I've met, and because of how much it has come to mean to me. But I can also recall, very clearly, trying to come up with a damn name for the blasted thing that A) didn't sound ridiculous, B) wasn't already taken and C) I could use anonymously, as a pen name. (And even then, I screwed up on B and managed to hijack someone else's blogger name right off the bat: It was not an auspicious beginning, I can tell you that.)

For five years, I've written about most of the things in my life that are important to me - I won't say "all", because there have definitely been a few times I've been either too embarrassed or exhausted to share, and other times when I just kept things to myself - and it's been an overwhelmingly positive experience for me. I haven't made a dime doing it, but never figured on doing so - and, that said, I've still lucked out a couple of times when it came to free goods: way back when, Snapfish gave me some free credits just because I'd said something nice about them on my blog. I've never become part of the "A-list" (or B or C...) blogosphere, but I never meant to do that either: I just hoped that what I had to say would find somebody that it made sense to; somebody who understood enough, or thought it was funny enough, or wanted to know more enough and would stick around to hear me say it.

And in that area, I've more than lucked out - I managed to get people to read almost all of the posts - sometimes it's just been one or two, other times more like a dozen or two, and, once or twice, about 1000. And I've wound up with a wonderful core of people who care, who pay attention to where I am and what is going on in my world, and who let me know that they are out there. That's you, if you're wondering.

I know I wouldn't keep doing this, if you all didn't keep showing up and saying so. I'd keep writing - I always have, I always will - but I wouldn't keep putting little (or gigantic) pieces of myself out into the world like this, hoping. Hoping that somebody else feels the same way about something that I do about something, or feels the opposite way, but still cares enough to argue about it. Hoping that I'm not the only one who gets bothered by some damn annoying thing. Hoping that there are happy things happening even when I can't see them. Hoping that there's more to me than just one part, and that people can appreciate them all.

So thank you for showing up, and for making these past five years a lot less lonely. I'm not planning on going anywhere, for the time being. As a matter of fact, tomorrow will find me participating in my fourth NaBloPoMo, and I am seriously considering doing that meme that's been floating around about the 30 days of truth. It seems like another step in making connections - knowing that I'm being honest with all of you is something I strive for here, even when it hurts - and I'm looking forward to the challenge of it.

Plus? It gives my tired brain a little nudge in the direction of writing something, which is often the hardest hurdle for my exhausted self to climb over.

Thursday, October 28, 2010

- A lot of these bullet points were supposed to get their own posts, but I am still at Grandmothers; sick as a dog; and my brain is full of a mushy type substance rather than brain cells. So, as opposed to leaving this un-updated and telling myself that I'll get around to it soon, I'm going to just stick to the bullet points. Enjoy!

- Yesterday morning, after suffering all night with a throat that got more and more sore as the hours passed, I popped out of bed because there was an alarm ringing somewhere in the house. I rolled over to the couch to ask (sleeping) Grandmother what the noise was, only to find that a) I had no voice and b) she didn't have her hearing aids in. Later, when U J got up, I found out that his hearing problems (he gets these weird ear things that sometimes make his hearing less than perfect) had gotten worse over night as well. Please tell me how you explain "a loud alarm! Was ringing! Is there a god damn bell or smoke detector or something????" to people when a)you can't imitate the noise and b) they can't hear it.

- There is no way to talk about the fact that you can't swallow without falling into an immediate "That's what she said" joke. I learned this after I got my tonsils out, but I think I must have forgotten. Now, every time I have to tell the doctor that I can't swallow, I have to bite my tongue.

- Grandmother is doing fine: Now that her only remaining therapist is the PT, whom she likes and who is trying to teach her to use the cane, she sees no real reason to continue using the walker. Even though, you know, she's supposed to be. Since her balance and strength are still off. She does her exercises, she practices with the cane, she says all the right things when the PT asks, but using the actual walker to get from, say the living room to the kitchen? Nah: it's "too short a trip" (even though it is the length of the house). The only time I can get her to agree to take it with her, at this point, is at night when she goes to bed: The PT calls those hours the "danger hours", the times when another fall is most likely to occur, and I think that's why she takes it upstairs with her.

- But still, she doesn't always use it... the den (where my sofabed of discomfort is located) is directly under her bedroom, and I can hear her moving around up there in the middle of the night, going to the bathroom without dragging her "friend" along for the ride.

- The irony in me - the girl who literally crawled from one place to another rather than 'give in' and use a wheelchair - trying to get someone else to use a mobility aid is definitely not lost on me. (Or my mom, who thinks it's pretty amusing, as she was the one having to convince me to use the chair all those years ago, even though I was literally falling down all. the. time.)

- I am very behind on my internet news, but can imagine that this isn't the only place you are going to read the following sentence: If the god damn politicians don't stop with the ridiculous campaign adds, I will not be responsible for my actions. Two additional notes - the amount of mental health ableism in those ads is unbelievable (In Massachusetts, there is one particular ad that flat out calls the opponent "insane" as well as "crazy" and a "kook.:) and, come October 2012, I am not going to watch any amount of unTivo-ed TV. I will not be able to watch what they're going to say about Obama.

- On the positive side, in the past month I've watched all three seasons of Veronica Mars, the (sadly singular) season of Firefly, and a good portion of Buffy the Vampire Slayer online. Of course, my home DVR is full up, but after I buzz through some Daily Shows and Colbert Reports, I should clear up a bunch of space.

- There's a million reasons why I'll be home/here this weekend (see above, see any link regarding health on this entire site, etc), but I still kind of wish I could go to the Rally this weekend. (And yes, I also have issues with the problematic name for the Rally: it was not necessary to call it the "Rally to Restore Sanity" - and therefore continue the stereotype that crazy = illogical and ridiculous and not what all of us "normal" people are like. I take issue with that and think it was a stupid move on their part, for sure.) I still wish I could go.

- Today, Lil Girl ran a race against two invisible girls, an invisible cat and an invisible dog, and she lost 3/5 times. If that isn't funny, I don't know what is.

Wednesday, October 20, 2010


Eleven days of not posting is hardly a record for me (unfortunately), but I don't like that it's been so long nonetheless.

Things here are still progressing: Grandmother has one more visit each with the VNA (Visiting Nurse: comes to take blood, monitor her vitals, overly explain simple things as if Grandmother is either a child or hasn't been taking a particular medication for the past fifteen years), HHA (Home Health Aide: comes to help Grandmother take a shower, has introduced her to the joys of conditioner specifically made for curly hair), and OT (Occupational Therapist: tries to convince Grandmother that her entire way of moving her body - quickly, unbalanced and without her walker - is putting her in danger. Even though she understands this, it does not mean that she makes the changes the OT recommends - except when the OT is here watching her) and by the end of this week the only outside treatment she should still be receiving is her PT (Physical Therapist: "The only one whose said anything that's actually helpful"). While I am looking forward to things slowing down here -

Quick Aside: Why is it that you are expected to be your most active during or immediately following a serious health related incident? I first noticed this phenomenon after a hospitalization about 13 years ago for pneumonia - when the nurses insisted I get up and walk around, even though I told them I would pass out if I tried to walk around normally. Of course I did pass out, but I was still supposed to try it every couple of hours. And then again, after I had my appendix out, the doctor decided that would be a good time for me to "get back on my feet" and prescribed PT, even though I was so sick following the surgery that I couldn't get out of my chair without crying. And this time, post TIA, my Grandmother is being required to exercise more than she has in probably the last 10 years - exercises and walks and constant visitors that make scheduling a nap difficult. Why do we make it so that the people who need the most rest barely get any at all? And why don't therapists and doctors and such take your previous (to incident/illness/reason that they are there) activity levels into account? /rant

- I am also kind of leery of what it will mean once nobody is coming in. Grandmother works best with the promise/threat of having to report back to somebody; once those people (she calls them her "drill sergeants," of which I am (sadly) one, because I have to constantly keep reminding her to take her "friend" the walker with her. She hates that thing with a burning passion) are no longer here to provide that threat, how is she going to do? It's a worry, but she's also scared of not getting any better, so hopefully that'll keep her motivated. Plus, I'm not leaving yet. (And even when I do, we'll set something up so that I can be checking up on her more... I hope.)

But that's our progress report: On the mend. Definitely.

I'll hopefully be back later to talk a little bit about something else, anything else, but since I've been here, a lot of the rest of my world has been put on hold, so I'll have to really think of something that doesn't involve therapists of any kind.

Miss you, internets: thanks for keeping me (semi)sane.

Saturday, October 09, 2010

Breathe in....

It's 11:55 and Grandmother is upstairs in the shower right now. On her own, which I am not entirely comfortable with, but it's not as if I'm going to get her to skip it. (grr. argh) I am more than a little worried, but we'll see how it goes, maybe all will be fine and dandy, all will go well, and there will be no problems (fingers crossed fingers crossed). She promised to leave the door open, and U J is staying upstairs just in case, but I am still wary. (OK, what is about three levels up from wary? Anxious? Nervous? Terrified? I'm that.)

It's not that she's not been doing well - she is doing exceptionally well. She's meeting or exceeding expectations just about across the board (there's the kindergarten teacher in me rearing her head again), but the two true deficits she's still having are in balance and strength. Those are deficits I know something about, unfortunately. Which means that while U J seems to be perfectly fine - not worried exactly, but not nonchalant either - about this whole showering situation, I'm a bit more skeptical. Because showers are my downfall, people, as you well know if you read this site. And because if you combine stubbornness and an inability to just ask for the help you need (particularly if you need that help while naked) with a loss of balance and strength control, then problems are more than likely. They might even be inevitable, in the longer run.

Hopefully not, but these are the times when I am most frustrated by my disability. The times when my illnesses are not just illness but clearly dis - abilities. Because I am physically unable to climb up those stairs to help her shower in the first place, so we can't avoid the situation in its entirety. Because I am physically unable to climb those stairs and wait around outside in case she needs my help (which she'd be more likely to ask for than U J's, since I've already seen her naked about a million times by now) with something small, thereby avoiding larger problems. Because I am physically unable to rush up the stairs if she hollers or slips or falls: If I started crawling my way up right this minute (at 12:05), it would take me at least 20 minutes to get up there, and when I got up there, I would be too wiped out to do anything else - I'd need at least an hour's worth of recuperation (by which I mean lying on the cold hard floor, being as still as possible) until my pulse slowed down enough or my blood pressure came back up enough or my muscles would cooperate enough for me to crawl my way to the bathroom floor. So, if she should need my help, it'd be a good hour before she'd get it, just physically. And yes, of course, in reality, if it were just she and I in the house and she needed help, I would not attempt to climb the stairs, I would immediately call 9-1-1, because they'd be able to get to her much faster than I could, but that really just proves my point even more: I would be one flight of stairs away from her, and the EMTs four blocks away could get to her more easily than I could.

So those are the times when my disabilities are shown as clear disabilities, and the times that they are most frustrating.

Alternatively, of course, is the notion that, if I were not sick, I would probably be employed, and if I were employed, I would definitely not have been able to be staying here this past month, so while I would, in that instance, be physically able to climb the stairs, I would (most likely) not be around to do the climbing or even know the climbing was necessary. But this post is not so much about playing "if only, if only".

I'm just trying to explain the very real frustration I'm experiencing right now: Not a "but what if I wasn't" type of thing, more of an example of "well, this is my reality." (If that makes sense)

And now it's 12:16, and the water has long since shut off, and Grandmother is coming down the stairs, cleaned and dressed and smiling. Safe and sound, happily. She says the entire operation went well, and that she remembered all the instructions the Occupational Therapist had given her (about sliding in and out on the shower chair instead of attempting to climb over the edge of the tub, or having U J set up the shower head and chair before she gets in). My worrying was thankfully unnecessary, and I'm glad I was able to distract myself by talking to all of you.


Friday, October 08, 2010


Just a little smile for your Friday night. Hope you've got something to look forward to this weekend. :)

Sunday, October 03, 2010

A happy update, for some change of pace

Hey everybody - just a quick not to say that things are going well here. Grandmother is home, and much improved. She's making me a little crazy because she gets up and walks away without her walker (which they've given her because her balance and leg strength are still chancy), but other than that, she's being a model patient. She's got a little bit of forgetfulness (which is frustrating UJ to no end, because of the repeated questions), and she's pretty tired all the time, but 20 days post TIA, her improvement is pretty remarkable, in my opinion.

I'm still staying here, for a number of reasons, including my own piece of mind. Ok, mostly for my own piece of mind. She's doing so much better, but she's still "kinda wobbly" (as Thumper would say), and both she and UJ seem a little overwhelmed by all the VNA / OT / PT appointments and evaluations, her new medication list, and all of the things that go into a recovery like this. Even though I know just about zero about recovery - as I have never achieved it myself - recuperation and readjustment following hospital stays and times your body has not behaved itself are pretty much my speciality, so I'm glad to help, however I can.

Right now I am concentrating on making sure that the right questions get asked, making sure that someone remembers the answers as well as I think they should (Hint: write everything down!). On insisting that the visitors treat my grandmother with respect - you wouldn't believe how many of the people just come in and start poking at her: How about you introduce yourself? How about you ask for permission? How about you remember that the patient is a PERSON? That they leave their contact information and a schedule of upcoming appointments (even if it's tentative, at least give us a day you might be coming back).

I've talked UJ through installing grab bars in the tub (even though it's upstairs), and reminded him that the PT suggests a bigger shower chair and a handheld shower hose (both are now purchased). I have explained how much better a pill box system would be than their old "Let's look at this list 16 times a day" system, and then watched UJ try to explain it to Grandmother this morning. UJ straightened the brick walk in the back yard and installed a handrail on the two steps out there (even though I tried to get him to use concrete so it'd be smoother, I got vetoed there). I've finally talked them into rolling up the rugs so she'll stop having to worry about them (That's not getting done for a few days, though, so I still have to watch her getting caught on the corners till then). I sit in my chair and anxiously follow her up the stairs with my eyes when she goes up for bed at night ---> She's supposed to wait for UJ to be behind her, but when he carries the walker up to put it at the top of the steps, she starts right up anyways. Another of my suggestions, that she take the pull out couch down here, was swiftly shot down and will not be entertained. I put the cream on her back every day, and watch as the rash she got from the unusual hospital detergent starts to finally fade.

Besides that, Grandmother shouldn't be left alone until they hook up the lifeline thing (even SHE remembers the "I've fallen and I can't get up" commercial: it was the first thing she said when they suggested it), so I'm still being useful that way - at the very least UJ can run to the supermarket and get something for dinner without worrying that she'll be hurt and unable to get help. Yesterday he went to mass, giving me the whole "I have my cell phone, you know how to dial 9-1-1, these are the signs of a stroke, are you sure you'll be alright?" speech, even though I am 31 years old. I understand his nervousness though: I don't know how I'll manage when I go home, because he hates the phone, almost as much as he hates asking for help, so if I'm not Right Here, then I know that he won't call and say he or she needs something.

So I'll stay for now. Even though I miss home, and my people, and my big comfy bed, and Lil Girl days, and my non-tivo tivo. But I don't want to leave till I'm sure they can manage, or until I absolutely have to (because I can't manage anymore), which ever comes first. (Although I am definitely going home for a shower tomorrow, come hell or high water.)

Hope your weekends have gone well, and that your Monday finds you ready to face whatever comes your way.