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Posts Tagged ‘kali’

We flew back home Sunday (arrived early Monday morning), and on the way we had one experience that just shocked me.

My fiance had gone to take Hudson out to do his business, as it was a long connection so we had time for it.  I was on my scooter and headed to check in with the gate agents so they knew to pre-board me so we had time to get everything taken care of and settled properly.

A man started snapping pictures of me.  I couldn’t believe it!  He didn’t ask, and by the second picture I was giving him the ‘WTF is wrong with you?!’ look.

When my fiance returned with the dog, the guy once again took pictures.  When my fiance rode the scooter back to the gate agent so it could be checked, even more pictures.

I’m furious.  I don’t know what the hell people are thinking when they pull shit like this.  It’s not the first time it’s happened, and most of the time it’s people of asian descent.  I don’t know what’s going on, but I don’t like it.  It feels like being fetishized – people are taking pictures of me because I look disabled.  Or maybe it’s people who are taking pictures because I’m fat and disabled and use a scooter, so they can har har over the way I use a scooter because I’m fat (nevermind that I’m fat because I have a disability and have been on meds that increased my weight, and the scooter is to relieve pressure on my feet and knees that they can’t take because of my multiple, overlapping disabilities).  It makes me so damn mad.

I’m not here for you to take pictures of and amuse yourself with.  I’m just living my life and I’d like the space to do so without being a THING to you, thankyouverymuch.

(On the other hand, the guy who wanted to take a picture of Hudson because he’d never been on a plane with a dog before?  He asked first, and I was totally okay because A) the picture was of the dog, not me and the dog, and B) he ASKED and waited for me to okay it rather than just jumping in and taking pictures.)

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So, I’m on vacation.  We flew out on the 11th, stayed a few days in a nice hotel with my folks, and then went up to the lake in the mountains.  The last day at the hotel, my dad suggested that we do a few miles of whitewater kayaking.  Being a bit of an adrenaline junky, I love me some whitewater.  Mom doesn’t usually participate in very physical stuff, so it was me, dad, and the fiance.

It was a great time, and while I had some sore, tired muscles at the end, I thought that it had gone well.  My back didn’t hurt, and I didn’t hurt anything while I was rafting.

Enter the next day.  My hands and wrists were swollen up bigger than they have been the whole time I’ve had this maybe-rheumatoid arthritis, and so painful that even with a vicodin added to my normal pain meds, I couldn’t sleep from the pain.  The tendonitis in my forearms is the worst I’ve ever had it.  My biceps are sore.  It astonishes me that I don’t have any backpain, though.

Four days later, I’m still puffy and painful in the hands and wrists, and the tendonitis in my forearms is still actively painful instead of just acting up when I do something specific that annoys them.  I did finally buy tendonitis straps yesterday, and it seems to have made things improve dramatically.  Sadly, the drug store didn’t have the arthritis support gloves you see so often, so I don’t have anything to help with my hands.

Other than that, the vacation has been amazing.  This whole trip has been in dry country, first the high desert, and now a relatively dry alpine climate.  I can’t express to you how much better I feel when I’m a drier place.  If it weren’t for the trouble I’ve had sleeping due to pain (and a relatively hard bed), this vacation would be pretty well perfect physically.

It’s a small family reunion, so my fiance has gotten to meet the far north branch of the family that never comes to anything and the central coast folks as well (who likewise rarely come to anything).  All told, there are just over 20 of us now with another 3 expected today.  He’s getting on well with him, and coming out of his shell nicely.

Tomorrow, we have rented a waterski boat.  I know that I shouldn’t, but I am going out.  I will definitely go tubing behind the boat, and I’m thinking about also using the kneeboard.  I’m probably not waterskiing, though – I was never all that good at it, and it means a lot more stress on my hands than kneeboarding.

Hudson approves of our vacation local because there is lots of grass for him to use for doing his business, not to mention that there are critter smells – squirrels, chipmunks, rabbits, raccoons, and there’s a chance of the occasional coyote or bear.  He’s not sure about all of my kin, mostly because we’ve all been packing into one livingroom/diningroom together for dinner.  The crowd makes him a bit anxious, but a few at a time he likes most of them.  My nephew, Gavin, has been making him a bit nervous when he hops around (as 3 year olds are wont to do), and my cousin’s 4-year old makes him very anxious – probably because he’s not as gentle as he ought to be and because the damn kid won’t leave him alone unless I run him off.  I get very concerned when I see a dog moving away from a kid and the kid following – that’s asking for a bite.  And the last thing I want is a dogbite incident involving Hudson!

Anyhow, I hope you are all well and enjoying the tail end of summer.

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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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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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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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Or at least, that’s what this week has felt like.

I had three appointments this week: one with my GI for new symptoms, one with a rheumatologist for a collection of new symptoms I mentioned in a previous post, and one with the headache center because my headaches are getting worse and I’m willing to try a preventative again.  All three appointments concluded in ways that I have to admit I’m far from thrilled with.

My new GI symptoms were lower GI bleeding and increased GI pain.  Now, I’ve been diagnosed with IBS, so I’m used to a certain level of GI pain, but it’s usually because of spasms and I have medication to treat that.  This pain doesn’t respond to those pills, and GI bleeding is always a concerning symptom.  There are two basic possibilities when you’re dealing with lower GI bleeding: hemmorrhoids and inflammatory disorders.  While hemmorhoids are a vile thing to consider, they would definitely be the lesser evil here.  One or two treatments could get rid of them, and while there’s a chance of recurrence, it’s not a huge lifetime thing.  Inflammatory disorders are a whole other boat.  Both Inflammatory Bowel Disorder and Crohn’s Syndrome are auto-immune issues, which means that your own immune system is attacking your GI.  We’re talking medication probably for life and the possibility of major surgeries to remove parts of the GI system that get too badly damaged.  Not pretty.  Both are currently on the table, and will remain that way until I get a sigmoidoscopy done next month.  I’m sure you can imagine, with GI pain, how much I want to have a camera shoved up my derriere.  Especially since the last time, I ended up in the ER a few days later with one of the few episodes 10 out of 10 pain I’ve ever had.  Ugh.

The rheumatologist appointment wasn’t a whole lot better.  I’ve seen this rheumatologist before; in the summer of 2008, he was the first doctor who suggested I had Ehlers-Danlos Syndrome.  He struck me as a kind man and a good diagnostician, so when I needed to see a rheumatologist, I asked for him by name.  We talked about symptoms, and he could see the swelling in my wrists even if he couldn’t see it in my fingers (because I have exceptionally slender fingers, they look about normal when swollen).  I didn’t like his answers, either.  He said that there were a couple of possibilities that sprang to mind.  Because of the GI symptoms under investigation, he said that I could have Inflammatory Bowel Disorder or Crohn’s, which can cause generalized arthritis-like inflammation.  I could also have a sero-negative rheumatological disorder like rheumatoid arthritis or Sjogren’s; the main confirmation for either of those would be a negative diagnosis for bowel issues and a positive reaction to medications that treat them.  In any case, he suspects something I’ll be dealing with for the rest of my life.  Joy.

And finally, on to the headache specialist.  I stopped seeing them a year ago because I tried two different preventative medications and reacted badly to both – sleeping 16-18 hours a day, having trouble doing simple things like feeding myself because I’d get sidetracked somewhere in the process (usually after putting food into the microwave).  Thing is, the headaches have gotten worse again.  I’m now having positional headaches, which scares the crap out of me because I know that can be a sign of Chiari, which is way more common in EDSers than in the general population.  It can also be a sign that the cervical settling I was diagnosed with a bit over 2 years ago is causing problems.  Well, the headache specialist threw in a new possibility – he said I could have pockets of cerebro-spinal fluid developing in my brain, which apparently is also more common with EDSers than the general population.  Aw fuck.  If that’s the case, they have to go in and patch them because they can cause brain damage if left unchecked.  Gah.  Because of this possibility, I have to have a MRI done, with and without contrast.  That’s pretty much torture to me.  I’m mildly claustrophobic, and having my head bound in place and then being slid into a tube that barely has enough room to fit me is pretty horrific.  Worse yet, to do a with-and-without contrast, they have to do one set of scans, bring you back out so they can inject you with contrast, and then put you back in.  It is one thing to deal with being put in once; something about being pulled out and put back in heightens the sensation of being trapped enormously for me.  And of course, for an MRI, you have to stay perfectly still.

They also are having a little trouble with preventatives because of my other conditions.  Migraine preventatives tend to be drugs that were originally intended for other uses that were discovered to have headache-preventing qualities.  They fall into 3 major groups: anti-depressants, anti-seizure meds, and blood pressure meds.  They don’t want to give me an anti-depressant because I’m bipolar.  I’ve reacted badly to 3 anti-seizure meds, so we don’t want to try that route again – no sense beating a dead horse.  Which leaves blood pressure meds…which have the potential of making my POTS worse.  I guess that’s less scary than messing with things that can affect bipolarism because I have a better chance of catching POTS symptoms before something bad happens, not to mention that the gap between theraputic for headaches and theraputic for the original use is wider for blood pressure meds.  That is to say, the level of anti-depressants needed to prevent migraines is closer to the level needed to treat depression than the level of blood pressure meds to prevent migraines is to the level needed to treat high blood pressure.  The really bad news is that they think the main medication I’m on to manage my generalized body pain may be making my headaches worse.  They want me to think about coming off of it.  The idea of coming off of the medication that makes the pain that encompasses my whole body tolerable is enough to make me want to scream.  I have to sit here and try to figure out which is worse: the possibility that my headaches will continue to get worse, or what it will feel like to come off the medication.  Pain is a funny thing; being on opioids is known to make pain worse in some people, so it might not be as bad as I think.  Except I remember what it was like before I got on the opioid medication.  I spent all of my time either at school, doing homework, or asleep, because being awake was too damn painful.  I don’t want to go back to that – it’s a frightening possibility.

Which is to say, this week was full of catostrophic SUCK.  I got answers I didn’t want at every turn.  It sucks up your energy, dealing with stuff like this, as if I didn’t have all kinds of other things eating up my energy.  I’m exhausted and sad and frustrated and angry, and feeling very vulnerable right now.  I feel like I am walking on thin ice, and anything could send me plummeting into the deadly cold water beneath.

In some different news, I am not the only person who has been dealing with sucky stuff lately.  A friend of a friend has had a crisis happen where she cannot get the treatment she needs to be as healthy and well as she can be.  My friend, Sharon of aftergadget.wordpress.com, organized an auction to help out.  There are a variety of things included in the auction, from artwork to services.  Please check the auction out at http://heathersauction.blogspot.com/!

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