Archive for June, 2011


Every now and again, you have times that really shove it in your face that you aren’t an able-bodied person.

For me, one of those times is when I get the flu.  What everyone ELSE gets as a regular flu bug, I get as a horrible stomach bug that almost always lands me in the ER due to dehydration.

I’m dealing with one of those right now, which is why I’ve been so quiet of late.  I hurt, and I’m sick, and I have the mental agility of a drunk.  Sadly, the fiance is working for a program for brilliant kids that has him hours away from me, and the roommate is also quite sick, so there is nobody here to take care of me but me.  Well, and Hudson, but sadly I can’t send him to the corner store for gatorade or to the pharmacy for regular medications.  I am hoping my doctor’s office can get me in tomorrow and give me a bag of IV fluids so I can stay out of the ER.  If my general practitioner’s office can’t see me, I’m going to call the GI’s office and hope they can manage to give me fluids even if they can’t get me in with my GI (which  I don’t think is necessary – all I’m after is something to keep this ‘just’ a flu and not flu + severe dehydration).

I feel like a rollerblader colliding with a lamppost.  Like I’m going to peel off and fall on the ground any moment like a cartoon, but for now I’m kind of hanging there stunned.


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Alright folks, I’m hosting the July edition of the Assistance Dog Blog Carnival.

I thought long and hard about a topic.  I think we’ve had some great ones!  So I sat and I thought, what kind of things are at the heart of experiencing the assistance dog world?  I could come up with themes that addressed those of us who are assistance dog partners, but some of them seemed to exclude puppy-raisers (and far be it from me to exclude the people who make some of our partners possible!).  I came up with ones that sounded good for people with program-dogs, but that I wasn’t sure would be as open for people who owner-train.  I thought and I pondered, and then I had an idea.

The Difference.

Difference is a big part of our lives, those of us who are involved in the assistance dog world.  There’s the difference in how assistance dog partners are viewed and treated.  There’s the difference between an assistance dog and a pet.  There’s the difference your assistance dog makes in your life.  There’s the difference between our dogs.  There’s the difference that being a puppy raiser creates in your life.  There’s the difference that raising a puppy to be an assistance dog will make in the world.  There’s the difference between owner-training and program dogs, and the difference in how people react TO that difference.  There’s so darn many differences that I could sit here all night writing about them.

So there you go: the theme for the 4th Assistance Dog Blog Carnival is ‘The Difference’.  Have at!  Submissions are due by July 22nd.


Edited to add: whoops, I forgot submission instructions!  Please reply to this post with a link to your entry, what you want to be called, and what the entry is called.  Thanks!

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So, I had a procedure today to determine what’s going on with my GI.  The news is good; with some minor adjustments in diet and the addition of a medication that binds liquid, it should be totally managable.  I’ve been on that medication before with no side effects, so this is about 99% positive.  (The only real downside is that I’m going to have to pay a lot more attention to the way my GI reacts to things, and may have to be more careful about substances like caffeine)

But to get to the good news, I had to make it through the procedure.  They gave me a combination of an opiate (to minimize ‘discomfort’ and sedate somewhat) and versed (to borrow my doctor’s words, “to make you forget”).  I remember things clearly up until the second dose of versed…and then I woke up in the recovery area.  I’ve heard of people having all kinds of bad experiences on versed, but this is the second time I was dosed with it, and all things being equal, it wasn’t all that nasty for me.  (Though I did have a reaction to something the first time that had me throwing up for a couple of days, I think that may have been my oh-so-delicate system’s response to the physical stuff they were doing, not the drug.)  I apparently take rather a lot to be knocked out – two to four times the standard initial dose.

There was some minor stress and confusion today.  I didn’t think about the fact that I was going to be knocked out and someone else was needed to mind poor Hudson.  The fiance had headed out for a walk and I couldn’t get him on his cellphone.  For a while it looked like one of the nurses was going to hang on to Hudson in the room with me, which would have worked out okay.  I was really impressed that no one seemed upset or annoyed or difficult about Hudson, even though I’d managed to make quite an unexpected imposition.  Granted, this hospital has always been totally awesome about the service dog.*  Their only concern was making sure that everything was handled in a way that kept the pooch comfortable, and the nurses were willing to totally go out of their way to take care of us – they were great when I explained minimizing interaction with him for the benefit of our partnership, which I’ve found a lot of dog-friendly places have issue with, but not here.  In the end, though, my doctor was running so late that the particular nurse who had volunteered to hang on to Hudson was going to be off shift.  They discovered that my fiance was in the waiting room, though, so he was able to take Hudson. 

Poor fiance was worried that it might be like that instance last summer when the ER barred Hudson, but it was really just a case of trying to keep the stress on the dog the lowest.  At least if he was with the fiance, he was being left with someone familiar to him, and his second favorite person in the world.  Apparently Hudson periodically whined while I was away – poor pooch.  That seems to be his typical response, though.  He doesn’t like being away from me.  I think sometimes he worries about what might happen while he’s not there to watch over me.  The fiance occasionally petted him when he whined, and apparently Hudson took that as a sign that they were going to me, because he stood up looking at the door he’d gone through when the fiance took him back to the waiting room.

Anyhow, so everything went well.  We grabbed an early dinner and had a brief stop in a store I enjoy to get a treat for later.  We got home and…well, they warn you that you aren’t to drive or make major life or business decisions, and I can quite tell why.  I’ve felt kind of…floaty…ever since, and I think I got dosed with the medications about 5 1/2 hours ago.  My head is fuzzy, and it takes longer for things to make sense than usual.  And oh, the bed felt so good to lie down in.  I spent a few hours curled up in bed reading mostly because bed felt so GOOD.  Just comforting and the right temperature and soft and…nice.  (I’m spoiled and have very nice sheets and a thick memory foam topper, oh yes I do.  I love them very, very, very much.)

I’m definitely not entirely back to myself.  I’m…here, but I’m drugged.  Not in an entirely unpleasant way, but everything feels just a little bit surreal.

…I probably should have put off writing the IT guy about my request for a listserv for a project until tomorrow, but at least I had the fiance read it first.  Oh well.  Worst he can say is no, I guess, and then a friend of mine has said he’ll find someone to host it if the school won’t.

*Almost all of my doctors are at this hospital, and the worst thing anyone has ever said about him is either that he startled them or that he’s in the way and needs to move to a different spot in the room.  They are always friendly and positive about his presence, and never once has anyone suggested that I shouldn’t have him with me.  Today was no exception – everyone loved him and wanted to help and even listened when I explained the ‘can not pet or interact’ rules, much as they wanted to love on him.  The way the hospital staff have responded to Hudson is part of why I ❤ that hospital and have everything there, even though it’s halfway across town.  I go where I am welcomed, you know?  It also helps that they consistently treat me as a person, not just a medical question or a disability.  The way this hospital acts?  This is real access, this is real accomodation.  This is me being a person with dignity and rights and intelligence and value and individuality in their eyes.

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One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

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The fiance just got the official call – he’s got the job!  He’ll be doing his dream job for a year, at a high salary for that position, with benefits, and it’s even close enough to commute from where we live, so we won’t have to deal with being separated.

We’re very happy, and there’s a lot of dancing going on, which is confusing Hudson and making him both excited and nervous.

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Cross your fingers

The fiance has an interview on Monday for his dream job.  Please keep your fingers crossed for us!  We’re both holding our breath and hoping….

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Okay, we’re not really getting married that soon, but I thought you would all like to know, my boyfriend asked me to marry him.

So we’re engaged now.  We’re not planning to get married for 4-5 years for mostly financial reasons, but there’s nothing to prevent us from getting engaged now.

We couldn’t be happier.  Well, okay, I suppose we could, because I expect that getting married feels even better than getting engaged.  Anyhow, I just wanted to share the happy news with all of you out there.

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Giving in

I left Facebook a year ago over concerns about the way they handle privacy and concerns about my professional life.  See, my Facebook profile was in my given name, which meant a potential employer could easily find it.  I think that my conversations about disability stuff and my somewhat problematic friends list would be less than helpful in getting a job.

When I say somewhat problematic, I’m mostly talking about family.  See, I have a couple of young family members whose public/private filters don’t match at all with mine.  A cousin posted pictures of herself in lingerie to her facebook, which sure startled me!  Another relative is prone to posting things like herself drinking when she was underage and smoking joints.  Now, if this was just personal, it wouldn’t bother me much, but nowadays employers DO look at facebook, not only at your page but who you have friended.  I’m sure the quick answer then is ‘okay, so unfriend them!’ – the problem is, my family is prone to DRAMA.  If I unfriended family, I would hear about it at the next family gathering and several more besides.

If future employers would only look at my profile, well, it would be difficult because I talk about disability issues and being tired and sore and so on.  But they don’t, nowadays – they look at your friends, too.  So I deleted my profile.

The final straw in the matter was an issue of principle.  Facebook has made more and more information public, and often given its subscribers no notice and little way to undo exposure it has created.  I believe strongly that businesses have a responsibility to respect their customers’ desired levels of privacy.  If you want to put everything out there like my cousin in her lingerie, well, that’s what you want.  But if you’re more like me, you just had facebook to keep tabs on friends and family and the last thing you want is the whole world able to see every little piece of information about you.  Facebook changing its privacy policy without notice on an opt-out model* really pissed me off.  I’ve had stalkers, I don’t want companies deciding to give away more of my information than I want given!

Well, enough friends have been on facebook recently that I’m putting one up with my nom de plume, Kali Blaze.  Part of me feels bad, because the issue of principle still exists and is still a problem.  On the other hand, having a disability is pretty isolating, so having another medium for connection available to me is a good thing.

* Opt-out models are ugly business, in my opinion.  Basically, an opt-out model means the business says ‘we are doing this thing unless you do X, Y, and Z to forbid us from doing so.  I think opt-in models are much more ethical, where you have to tell them they can do whatever it was they wanted to do.

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I’m training Hudson to do my dirty work.

When the boyfriend teases me, I used to poke him or tickle him.  I’ve had increasing problems with my hands for longer than we’ve known each other, though, so there are often times when I can’t do that.  Particularly recently, with the maybe-it’s-auto-immune thing I’ve been dealing with.

So my solution is to find something Hudson can do.  I’ve invented the command ‘toes’, at which Hudson is supposed to nose or lick the boyfriend’s toes.

The boyfriend is amusingly tolerant of the whole affair.

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