Tuesday, April 24, 2012

"No pas creme freche"

Henri and I are feeling quite simpatico right now - I actually had a pretty good weekend, but ended up with either a MAJOR allergy attack or a not so horrible but still annoying cold, or (more likely) a combination of the two & it has not been awesome for me (hives! scratching my eyes out! a nose that is all drippy and sneezy! a throat that is scratchier than an emery board!).  I feel like a waste of space, with the lowest amount of possible energy a human being can have and still be said to be 'existing': I am frustrated at yet another set back, but also I kind of don't care about anything either, because that would take too much effort.  I would have said I was behaving slug-like, but then I saw this video, and I knew it could explain it better than I could.     Here's hoping tomorrow is not an Henri kind of day, for any of us.  Now, somebody help me dig up some spoons. 

Thursday, April 19, 2012

Current carb count: 53; Goal for the day: 170

This whole counting carbohydrate things that I'm doing for the (potential/maybe/i don't even know anymore) diabetes is stressful and overwhelming: Even though I make the computer do most of the actual math work (thank you, SparkPeople!), trying to figure out the balance of carbs v protein v fats before you can put a morsel of food in your mouth is mentally exhausting & a lot more challenging than I would have guessed.  I never realized how privileged I was just to see food or want food, and then eat that food - I mean I've got my own food allergies and those have caused me issues here and there, but this whole not being able to eat an entire class of food thing (at least not like I used to anyways) is humbling: It's a whole 'nother level, that's for sure.

 "Oh, you mean it isn't this easy for everybody? And I'm making assumptions about people subconsciously based on what they eat/don't eat? And more judging based on things I have no clue about?  Awesome: let's try to fix that, shall we?"   It's funny, because whenever I think I've unpacked my whole 'privilege knapsack', there's always something left at the bottom that needs to be dealt with.

Anyways, in a twist that only seems likely in this household, my dad was also just diagnosed with diabetes - as in he went to the doctor last week for a random physical and his blood glucose was up over three hundred (this is not a good number, for those of you who don't have to worry about this stuff - you generally, for a fasting blood glucose, want the # to be under 100). She (another doctor I really can't stand even though I've never met her) immediately put him on meds, and told him he had diabetes.  That's it: nothing about his diet  -oh no wait: she did say "Don't eat bananas anymore", which makes no freaking sense to me at all, but whatever - nothing about a glucose monitor or a diabetes educator: just take this pill, eat better, and come back and see me in a week.  It - quite naturally, - freaked him the hell out.

But here's the thing about my dad - when it comes to his health, he's easily freaked out.  So her giving him the news that way was not in anybody's best interest.  He's definitely not a  hypochondriac, but he has certain hypochondriacal tendencies: Everything he has is going to kill him.  Maybe immediately.  It's not the regular flu, it's the swine flu, and even if everybody else in the house has it and is vomiting and shivering with fever, HIS fever is the worst ever, and he threw up more than you.  He's one of those people who thinks they are good at being sick - I've actually heard him say "I'm a great patient" and I had to roll my chair into the other room to laugh - but is really kind of pathetic and weird instead.  So, he found out about the diabetes, freaked out, and then sat morosely in his chair for hours, until my sister asked him what was up, and then we spent the next couple of days trying to explain that it wasn't a death sentence. 

Since I'm kind of on this path myself, I tried to explain to him that he needed to see a nutritionist and a diabetes educator, that his doctor should have written him a prescription for a glucose monitor, and that he still had a lot of work to do, but starting the meds didn't mean he'd never get off of them.

And also, just as an aside here:  so what if he never does?  Is he worried about getting off of his blood pressure meds or the stuff he occasionally takes for his RA? No.   But there's something about diabetes (type 2 anyways) that I'm just learning about - there's a stigma I hadn't been all that tuned into: the whole "you could have prevented this, and so now I'm allowed to look down on you" vibe that comes along with the meds and the testing and the diagnosis.  The feeling that you brought this on yourself, by being a big fat slob (which he is not).  And it's not just other people: There's really such an internal bias about it - at least for me: All the rest of my diseases came from who knows where, and Maude only knows how.  But the diabetes? That feels like I failed at maintaining my body, that it was my fault that this could be happening - if I wasn't so fat (never mind the steroids and the not being able to exercise and the no spoons for finding good food) this wouldn't be happening.  Which A) is not true because skinny people get diabetes too, and B)I'm a pretty average eater, nutritionally - I probably eat 'better' than average, because I love veggies and fruits, and C) is ridiculous because I can not control my pancreas any more than you can control yours.  But still, it's there - there's a sense of blame and responsibility about diabetes that I just don't have about my other illnesses - with them I know I didn't do anything that 'caused' them, so I'm not ashamed of having them (although I do feel guilt about not taking care of my body when it needed me to, and making things worse, but that's a whole 'nother story).

 I'm not on any diabetes meds, yet, at any rate, so I couldn't tell him that they weren't that bad, but he's the type of guy who reads all the side effects on that sheet they give you, and assumes he's going to be the one in 45 million who get purple spots or heart palpitations or death.  He has no history of drug intolerances, which I pointed out, but that didn't convince him either.  We looked it up, and saw that it's a super common drug for diabetes, and that side effects were pretty rare, mathematically, which sort of helped, I guess.  As a last resort, I tried to tell him that I had - on more than one occasion - been injected with radioactive formulas, other people's white filtered white blood cells, and a known poison, so probably taking a really common drug wouldn't be his downfall.  I don't know if he believed me or not, but he took it anyways. And his blood sugar is much more under control now, which is great.

And we're talking again, after the big blowout, which is also kind of nice, and kind of awkward, because ... well, when someone tells you you are a piece of trash (more than once and in lots of different ways), it's hard to feel kindly towards them again.  Especially if you feel they still don't get how hurtful they were, or that they're still not being all-the-way honest.  So it's tricky and awkward and hard.  Except when it's not: because he's my dad, and because he needs my help, and because I love him anyways.  So: awkward, but hopefully, positive. 

 He's also a little obsessive about things - so if he starts to research something, be prepared to be overwhelmed with 17 daily e-mails about what foods are good for your blood sugar, and which are killers.  Since I'm also an information-obsessive, I can understand the need to hoard as much knowledge as possible about what's going on with your body, but I tend to keep it to myself: I have folders and books and links and articles and quotes and studies and whatever about what's going on with me, but I don't bombard people with them.  I honestly, barely tell people anything, but if I did, if I sent every little piece of information that I found that is slightly related to my health directly to them at all hours of the day, they would (correctly, IMO) block my e-mail and stop communicating with me all together.   The problem is that he is not the best researcher, so most of his e-mails consist of things like "DANGER NEVER EAT THIS FOOD IF YOU HAVE DIABETES!!!" or "Super! Food! Reverses! Diabetes! Immediately!" which, is both annoying (because: obviously false) and frustrating (because later, he wants to talk about all the e-mails, and did you get them, and what did you think???? I think: obviously false!)

So, aside from helping him with the math (and telling him he should switch us over to smart phones so we can have apps that do the math), I had to tell him to cut me out of the loop on some of this stuff: I am so overwhelmed already with trying to figure out how to help myself navigate this whole diabetes thing, and help him navigate it, that the fear mongering or miracle cure e-mails are a distraction that I just don't need. 
He got that hurt/pouty look when I told him that, but he's going to have to suck that up, because I've got about all the mental clutter I can handle already, thank you very much.

 He also made my mother and Sister J, who have THE WORST DIETS IN THE ENTIRE WORLD, I am seriously not kidding (Mom has been existing on a diet of mostly chocolate covered pretzels and bacon for a few months, where as SisterJ says things like "How was I supposed to know kids aren't allowed to have more than three doughnuts for breakfast?") test their blood glucose number, just to see.  He may not have had a pouty face when their numbers were exceptional (both under 100!), but I was pretty damn shocked - it did make me growl a little that someone who eats an entire box of Entemanns Raspberry Danish for breakfast can have such low numbers when I ate salad for breakfast, lunch and dinner yesterday and my numbers are out of control.  Jealous grumbles were definitely heard from my corner, even though I was glad I wouldn't have to start helping them do carb-math as well. 

So now I've written write straight through lunch time, and I have to go crunch some numbers into making sense and put some food in my face.  (Unfortunately for all of us, it won't be Raspberry Danish)  

Monday, April 16, 2012

Moar! Writing!

On the plus side, I have spent three hours today writing.  On the negative side, I spent most of those three hours writing and rewriting a post that is nowhere near ready to be shown to people, so let's call it a wash.  I was going to write that I'm enjoying writing again, but that's a little bit too strong: I'm almost enjoying writing again.  The almost is only because I forgot the part where it was work, and working at something, particularly if that something is emptying your insides out onto paper (or computer screen, as the case may be) is not always enjoyable. But that's the only part that isn't - Giving myself a set writing schedule and feeling so! accomplished! when I can check it off my to-do list (even if nothing awesome actually has resulted yet).  Shutting things off in order to hear the sound of my own thoughts.  Paying more attention to the difference between what I'm thinking and what I'm saying.  Knowing that the part of my brain that has things to say isn't as useless as it has been pretending to be - all of these are excellent things, and I've missed them.  Now if I could just get it all to make sense to anybody else but me, I might have a shot at sticking with this whole writing thing.

Wednesday, April 11, 2012

guess what?

I stopped writing again.  And taking pictures.  And talking to people outside of my house.  And doing anything just for fun.  Not all the way - there was some writing, and some fun, and some pictures, but for the most part?  I just stopped.

Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things. 

And there were some Very Bad Things -

 -  My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again.  If I thought I would be a real help, I would do it in a second.  But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense. 

-  I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed."  Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing.  He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it.  Doesn't matter, for some reason.  Still felt like getting kicked in the face, one more time. 

- Things around the house have been... I guess awkward is the best descriptor I can think of.  The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward.  There are things you can't say, places you can't go.  And there's still the belief that an apology is enough, which I am not finding to be true.  He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part.  He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not.  (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)

- There's a distinct lack of children.  What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love.  (Also: note to self: there's really only one 'little' person left, and he's two hours away.  The kids I see regularly are going to be 6 and 12 (!) in less than a month.)  I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with.  Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey.  It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'   

-  There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming.  I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense.  I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix.  At least not now, and not now, I'm starting to realize, has been going on for at least ten years.  It's starting to get to the point of 'if not now, when?'   That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.

-  Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.

So there's been some stuff, is what I'm saying.  But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often.  At least once a week, hopefully more.  About stuff that matters, not just random gobbledegook.  So I shall see you all back here, very soon.  Till then, be As Well As Possible.

Monday, April 02, 2012

Dear Entertainment Weekly,

Although my Entertainment Weekly did arrive today, not only was it unreadable to me, but it actually managed to set of a nifty asthma attack, due to the inclusion of perfume ads.  There have never before been odorous ads included in my copy of EW (and I've been a subscriber on & off  for about 12 years), so I am particularly disappointed with the fact that there was no notice or invitation to opt out regarding your magazine's intention to add ads with fragrances.  There are many health issues which could be negatively impacted by your decision, including my own, and to so completely ignore the needs of your readers with disabilities, seems a grave oversight.   It was not my intention to start the weekend with a heavy dose of steroids, just as my as I am sure it was not your intention to cause such a need, but when it comes to people's health, intention doesn't matter nearly as much as actions.  I suggest, in the future, that you enable the customers of your magazine to have the choice over whether these ads are included or not. 

I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great.  However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect.  So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented.  This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them.  I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that.  But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause. 

I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12.  If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service."  Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it.  The opposite, is also, unfortunately and obviously, true as well.)  

Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be),   and a truly missed opportunity to step up to the plate, accessibility wise, on yours.   

I look forward to hearing from you,