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Posts Tagged ‘disability’

One of the hard parts about having a chronic illness is that some doctors are just going to fail you.  And some of them are going to fail you badly, in ways that are really harmful.

I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless.  He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome.  I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS.  He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis.  He made me feel disregarded, and above all like the most important thing for him was scrambling off to his meeting he was late to.  Hey, he’s the one who scheduled patients for that date and time.  It’s just not right to do that when you don’t have the time to actually deal with them and talk to them about the ramifications of the diagnosis (or non-diagnosis) you’re giving them.

My GP at the time didn’t believe I had EDS.  I only got the referrals to geneticists because I insisted on them and the rheumatologist said it might be possible that I had EDS.  She had misremembered things, and thought that the physical appearance that is a give-away for Vascular type (but NOT present in all people with Vascular type) was present in all people with EDS.  Things like narrow lips, a thin nose, and protruding eyes, none of which I have.  I have fairly full lips for a white woman, a button nose, and eyes that are neither protruding nor sunken.  I fought her to get the geneticist’s referrals.

After that really awful appointment, I was torn between wanting to cancel with the second (world-renowned) geneticist as a waste of time and being certain I needed to see her because she ‘got’ EDS and that first guy didn’t.  I’m glad I went with the second line of thought; online communities of people with EDS gave me the confidence to go through with it, even though it was going to end up costing me about $700, when you included the travel and the high price of an appointment.  She was amazing and kind and thorough, and checked all kinds of things I didn’t know were relevant, and gave me written recommendations for things my doctors at home could do to help.

The contrast between the two geneticists couldn’t be bigger, and it made me so frustrated to look back on that first appointment.  The chill, the lack of empathy, the lack of time for me, the inability to answer questions…it was just horrid.  It was, at that point, the worst experience I’d ever had with a doctor.  I couldn’t believe how unhelpful he was.  Being able to compare him to the good geneticist just made it all the clearer how awful he was.  I had to talk to my fiance to get verification that he really was as bad as I remembered, because I thought that perhaps my feelings had clouded the way he actually treated me, but my fiance agreed that my version of events was right.

So what do you do about doctors like that?  I mean, of course you avoid them.  Maybe you even write them negative reviews (I left him a pretty scathing one on every doctor rating site I could easily find!).  I thought about writing his hospital about how awful he was; I think maybe I should have, especially the scheduling issue.  Because it’s just not ethical to book someone in for an appointment, have them wait months and pay for it, only to give them insufficient time to actually talk to you about what the diagnosis means and what they should do about it.

Yes, you hope to find the good doctors.  At this point, the geneticist I saw who was so wonderful has a 2 year long waiting list, because she’s so good.  That’s a problem in itself.  And I know I am quite privileged to be in a position where I could A) push my GP into giving me the referrals I wanted, B) get a second opinion, and C) travel to a renowned specialist in my condition.  But even from a place of such privilege, it’s hard to go through.  I can only imagine how much harder it is for someone who isn’t a ‘good’ patient like me*, or who doesn’t have the health insurance or financial resources I have had access to.

*When I say ‘good’ patient, I mean the sort of patient that is perceived to be a good patient by medical professionals.  Young, white, cis, female, well-spoken, middle-class, generally able to be medically compliant and have always had access to medical care, no tattoos, natural hair color, only basic earlobe piercings, no addiction issues, in a steady long-term relationship, etc.  I know my force of personality has also helped me get the care I need, though in some cases it has taken far too long (my autoimmune issues probably should have been diagnosed years before they were, but that’s a post for another day).  I think it’s really problematic that so many of these things that are beyond the patient’s control affect whether a patient is seen as a ‘good’ patient and from there what quality of care they get.  I do have a few things that keep me from being an ideal patient – I’m fat, I don’t exercise ‘enough’ (though I do emphasize that I do as much as I feel I can), I’m disabled, many of my symptoms aren’t quantifiable from the outside, I take a number of daily meds including opioids, so on.  I’m not a perfect patient, but I think my demeanor and ability to advocate for myself usually is sufficient, combined with my ‘good patient’ points, to get me a high standard of medical care.  Other than fighting to see the geneticist, I’ve never been refused any referrals I ask for, and no one has suggested to me that my conditions are ‘all in my head’, even though many of them are hard or impossible for an observer to see.  I’ve also usually gotten the treatments I have decided were necessary.  I’ve rarely had my complaints brushed off.

…sheesh, I think maybe I need to write a post about the ‘good’ patient and how that’s a problem.  Probably talk about privilege a bit too, because medical care is one of the sneakier ways that privilege shows up.  I’ll put that on the to-do list.

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Most of you who read my blog have done so for quite some time, and I’m sure you’ve noticed that in the past couple years, I’ve been much more quiet than in the past. I’ve been dealing with pain and inflammation and mental fog and all kinds of fun new symptoms while desperately trying to finish law school. It’s been a rough two and a half years, since the ‘new’ symptoms started.

For a while, my doctor and I thought it might be Lyme Disease. I responded positively to the right antibiotics, and very swiftly. We did several courses, and things improved a bit each time, then got worse again. Despite multiple blood tests, the only things that ever showed up were markers of increased inflammation.

I got frustrated with the status quo this summer, and asked to be sent to the rheumatologist again. If it was Lyme Disease, we had treated it pretty aggressively, and yet I saw no improvement. Besides that, I started having symptoms that are not as much associated with Lyme Disease. For example, I have psoriasis on my scalp, which has been there for most of a year, though it was only diagnosed this summer – I just kept forgetting to ask about it after the dandruff treatment did nothing to help.

Well, we have a general answer now. I probably never had Lyme Disease, but instead have had an auto-immune disease at sub-clinical levels. Basically, that means that my immune system has been attacking me, but not in a way that showed up in blood tests. I got the first positive auto-immune test – an anti-nuclear antibody or ANA test – about two months ago. About a month ago, whatever is going on kicked into high gear – my hands puffed up so that there were days I couldn’t even hold a fork, my feet were bad enough that some days I couldn’t walk, and boy has it been awful. The rheumatologist gave me a steroid to bring down the swelling, and then a week later had to increase the dose because the inflammation rebounded. My hands are now back to about where they were before this latest flare, though I’m still on the steroid so they’d definitely be worse without that. I’d like to eat the whole world and drink a lake. I also have a new found sympathy for menopausal women who complain about hot flashes. I was pretty dismissive before (internally! I’d never say such a thing to someone complaining about them!), but now I’m waking up every hour or two at night because I’ve sweated so much that the sheets are plastered to me and I’m so miserably hot from the waist up – and that’s with the apartment turned down cooler. It took me a week or so to figure out how to more or less balance things; until then, I was freezing from about mid-thigh down and frying on at least my head and often all the way down to my hips. On a good night, it’s only my head that gets hot, so I put a blanket over my body and turn the air down cold and then I only wake up a couple of times. On a bad night, I’m alternating between frying and freezing, and it’s making me groggy during the day.

At this point, there are definitely forerunners in the list of conditions that I might have. Psoriatric arthritis, rheumatoid arthritis, Sjogren’s Disease, and Mast Cell Activation Disorder/Disease are the current hottest suspects, as I understand things, but frankly none of the auto-immune diseases are entirely outside of possibilities. MCAD in particular has been observed to happen at higher frequencies among people who have EDS, so I suppose that may be the most likely, though it’s much harder to test for than the others. The second panel of more specific blood tests is due back any day, so hopefully I’ll have an answer soon. Unfortunately, the answer may well be that whatever I have, while it has been identified as auto-immune, can’t be identified more specifically via blood test. I pray that with an answer will come a more direct treatment. While the steroid is helping, and while steroids are often used in bad flares of rheumatological disorders, they are treating a symptom (inflammation) instead of dealing with the immune system itself. (Technically, MCAD seems to be classified as a hematological disorder rather than a rheumatological disorder, so I may need to be sent off to a whole different specialist, and people who treat MCAD are harder to find than people who treat what are more or less bog standard rheumatological disorders.)

I’m still feeling emotionally blitzed. On the one hand, there is a chance – an admittedly very small chance, but a chance all the same – that the past 7 years of health issues may all be linked to this, and thus may all markedly improve given effective treatment – I might get some semblance of the old Kali back, and the old Kali’s LIFE back. On the other hand, this has been going on for at least 2 1/2 years, and on some level I’m very angry about how long it’s taken and how little my doctors have been able to do to help me. Part of me feels like someone should have figured this out long before now – if the drugs to treat auto-immune disorders were not quite so powerful, I would have pushed for a trial of one long before now, because at least it would clearly eliminate auto-immune conditions, which can run at levels a blood test cannot detect for years, and may very well have done just that in me. I’m worried that the blood tests will be inconclusive, which means the possibility of less pleasant tests like biopsies to look for Sjogren’s. And I’m tired. I’m tired of it being one new thing after the next, tired of being sick, tired of being sickER, tired of the progression, tired of having to watch new symptoms blossom and often be present for long periods before anyone does anything effective about them. I’m frustrated with the whole medical industry, which I know is not completely fair to particularly my GP, who is a very caring individual who has invested a lot of time in learning to treat a patient as complex as I.

Hopefully, I’ll have another update for you all soon with an answer, and then we’ll get to start the treatment merry-go-round. Most medications for auto-immune disorders come with heavy side effects – oh, certainly, nothing to compare to the damage and pain of letting the condition run unchecked, but unpleasant all the same. I’m not looking forward to that part of a potential diagnosis.

And I’ve got to manage to hold things together through December. This is my last semester of law school, and at the end of this I’ll finally have enough units to graduate in May. Finally. It will have taken me twice as long as the average student, but finally I’ll be there. Then…well, I guess I try to open a law firm, which is its own terrifying adventure – new attorneys almost always join other firms, for good reason, and I probably won’t even have the money to hire a paralegal to help make sure things get done right. But that’s the next chapter, right? And hey, if my health evens out…maybe I can find a small firm that is willing to take on someone whose law school career doesn’t look all that great, so that I don’t have to figure out every step of this alone.

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Hi out there. I’m still alive. My heart still beats, my lungs still breathe, my body still keeps running along, and my mind struggles to handle the situation.

We know now that my back injury is almost 100% definitely all muscular. The only shadow of doubt is that with EDS, imaging studies can be a bit…less than accurate. What our spines and brains look like when we’re laid out prone and what they look like when we’re upright don’t really match up. I’m hoping to get a set of imaging done on an upright MRI later this spring or possibly this summer. I’m afraid of the results, as I have so damn many symptoms of a condition called Chiari, where parts of the brain (the cerebellar tonsils) lie too low and cause pressure on the brain. It would explain so much – the random waves of vertigo, the fainting and borderline low blood pressure, the tingling and pain in my hands, arms, feet, and legs, the memory issues, etc etc etc. It’s one of those situations where neither answer is good, and I probably should be pushing for the answer faster but to be honest I’m a bit tired just now.

I have a new injury to add to the pile – I managed to dislocate two of my ribs just shy of a month ago. It has been exceedingly uncomfortable, and it flared up the back problems again. Things are settling down, and I’ve been fitted for a brace that may make long-term improvements to the condition of my back. The drawback is that it’s a rather bulky thing, and not terribly attractive. In the short term, I intend to wear it over my clothes; in the long term, I am not sure whether I will buy larger clothes that it can be hidden under or continue to wear it outside or perhaps only wear it when I am in pain. I just don’t know. It isn’t the first time that I’ve had to wear a visible brace – my knee braces are visible when I wear shorts or skirts, and my finger braces are visible any time I wear them. It’s just that when more formal dress is called for, I can easily hide the knee braces with a long skirt, and my finger braces are made of silver and relatively attractive (not to mention I generally only wear them for things like typing and crafting). This brace will be harder to hide. If I buy larger clothes, they will not be flattering at all to my body, and you’ll be able to see the outline of the brace under my clothing quite easily. So at least for now, while I am wearing mostly t-shirts and jeans, I’m not going to cover up the brace.

Anyhow, moving along. I’ve had to drop one of my three classes because of my damn injuries, which is terribly frustrating. I’ll end this semester with 78 units, and I need a total of 88 to graduate. Because of the damn dropped class this semester, I’ll need to add a summer course to make sure I have enough units to graduate. It’s a frustrating situation, where I can look back and say (at this point) that I have paid for and worked on 28 more units than I will have credit for, because I wasn’t able to finish them due to injury or illness. It works out to about a year and a half of my life just thrown away, or at least it feels like ‘just thrown away’. Ugh. And having taken so long to get through law school, the finer points of your basic classes are a bit…fuzzy. I’ll need to re-learn the material in order to take the bar exam. It’s terribly frustrating, all of this, and I don’t have words to explain just how angry the whole thing makes me. I just…I just want to be done, I just want to be practicing and helping people. I don’t WANT to be in any more classes – at this point, I’ve been taking classes for 13 of the last 14 years (one of those at half-time while in high school, but I was taking college classes all the same). I’m more than ready to be done with school.

I’ve got to let go of that now, or I’ll spend the whole night awake, frustrated and angry and spinning my wheels thinking about how unfair it has all been.

Bailey continues to be a lovely pet, though she’s a bit of trouble. She’s been getting into fights at our dog park; what seems to happen is that other dogs get somewhat aggressive with her, and then…well, she may not start the fight, but she’s quite willing to finish it. 3 of the last 4 times have resulted in a minor fight. There have never been any serious injuries, just scratches once or twice, but it’s not good all the same.

We’re moving next month, ugh ugh ugh. I like the new apartment, though it is a little farther from school than the current place. It’s on the ground floor, and it’s accessible (!!), so it’ll be easy for me to get my scooter in and out, and one of the bathrooms has a fold-down seat in it. Wonderful! It’s a 2-bedroom place, and very recently re-done. They had intended to make them condos, but then the market tanked and they became apartments. I’m not sure how the size of our current place relates to the size of our new place – the figures I’m finding online for the square footage of our current place just can’t be accurate! I know that the new place isn’t 50% bigger than the old place, but that’s the lie the internet is telling me right now. I think they may be very similar in size and just very different in shape. Everything is squarer, instead of the long narrow rooms you get in row houses. We’ll have a sitting room and a library, and the second bedroom will mostly be storage for my craft stuff, along with things like my drafting table so that I can paint. I hope that being in the apartment won’t make our dog-related allergies worse, but it’s a definite possibility. Perhaps the hardwood floors will make up for it.

I don’t know if my aide will follow me to the new apartment. It’s not convenient for her, but oh will I ever miss her if she doesn’t come with me. I just discovered that there’s a way to get to the new place that will take her the same amount of time as getting to here, so she just might come with us. That would make me very happy. Having a totally trustworthy personal care assistant/aide is not something you can take for granted. I know that Nikki will do what I ask when I ask it, and do it my way even if she’s got a different way she prefers to do it. I also know she won’t steal, as she’s worked for me 4 years and had plenty of opportunity and never taken anything, even money (accidentally) left in plain sight. She’s also very good at her job and hard working. I’ll be all kinds of torn up if she doesn’t continue working for me! To top that off, there’s no longer a good system for me to get a new aide. It used to be that there were agencies that employed the aides, so if you didn’t like yours, you could request another. They made a big shift in my state on how the aides are organized now, and to be blunt there really isn’t an organization of aides anymore. No one I can turn to and say ‘excuse me, I need an aide!’ All of us who employ aides now have to find them for ourselves. It’s not a great situation in my humble opinion. I don’t want to be putting ads in Craigslist or whatever, and hope that the new person is anywhere near as good and honest as Nikki. Besides all the doing her job well stuff, I like Nikki. She’s good people. And if I’m too far away, it works out bad for both of us, because of that lack of organization. There isn’t anyone SHE can go to and say ‘I need another person to work for.’ It’s just a yucky situation all around. Apparently it’s costing the state less (my aide is paid by my state, because I am disabled and broke).

Ugh, enough of that.

As you can see, things have been a bit more interesting around here than I’d really prefer them to be. All this time, and I owe a company a product review for some stuff that I’m very fond of and would like to tell you about! Not to mention how little I’ve written about my life, and being a service dog partner, and being a law student, and being disabled, and so on. I’ve written near nothing that wasn’t school related in ages. I have piles of notes for my various classes, but nothing personal and nothing literary. Blah. I suppose it’s a pretty good reflection on my life lately.

In the to-do box are things like visits to a neurologist, seeing an ophthalmologist and getting new glasses, packing up and moving into the new place (we take possession on the 15th, and have to be completely out of the current place by the end of next month, so we’ve got a bit of time for ferrying things back and forth). I have a knitted project that I really must get finished, as it was sold to someone in exchange for a large donation to helping orphanages in Haiti. I’ve also got to alter my mother’s Christmas present (I knitted a sweater and it just didn’t fit) and finish my nephew’s Christmas presents (a pair of crochetted lions, which just need to have their faces embroidered on at this point, but I’ve little love for embroidery).

So many things to do, and just the two hands to do it, with one of them twitching randomly in a most annoying fashion. I’ve had a very mild intention tremor since I was 13 or so, but now I have this major shaking both at rest and when I try to do some actions, like holding something still (rather ironic, that, isn’t it? I try to hold something still and instead I shake it). One more thing in the pile. I’ve been having my nails break, my skin dry and breaking out, and my scalp hurting and flaking and scabbing over, and we’re not real sure of why just yet either – it could be my thyroid, but it’s rather unlikely, and I don’t know what the next possibility after that is.

Anyhow, I am rather tired now, and when I get sleepy, I must away to bed. My insomnia is a pain if I do something stupid and work through being sleepy. Good night, everyone, and I hope that things have been treating you better lately than they have me!

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As of Friday, I’ve officially been diagnosed with Lyme Disease.  It’s a clinical diagnosis, partially based on my reaction to antibiotics in December (I was exhausted but the pain and swelling totally disappeared).  I’m supposed to get blood drawn (tomorrow, hopefully) to check for Lyme antibodies, but at this point I have enough symptoms that my GP was willing to call it.  See, the tests for Lyme are pretty unreliable – the false-negative rate varies from 30-50%, which is pretty absurd.

I’ve been on antibiotics since Friday afternoon, so I’ve now got 2 days worth of pills in me.  I’m tired, but my sleep schedule has been pretty messed up lately.  Have any of you ever seen a mouse or a hamster (or a rat, I suppose) slip while running on its wheel?  If they’re going the right speed, they kind of get thrown around in there like clothes spinning and bouncing around in a dryer.  That’s what my sleep schedule has been like lately – I’ll get it going reasonable for a day or two, and then it’ll get majorly screwed up again, and I’ll be thrown around for several days by that.  It doesn’t seem to matter whether I take the measured approach to fixing things (adjust by just a little bit at a time) or the radical approach to fixing things (either stay up a huge amount of time or knock myself out with sleeping pills, either way designed to get me asleep at the appropriate time).

This video gives you an idea of what I’m talking about: http://www.youtube.com/watch?NR=1&feature=endscreen&v=buUKHggrhd4 (I wanted to embed it, but it looks like WordPress wants to charge $60/year to let me embed videos.  wtf, man?  I just want to embed ONE now, it’s not something I do a lot…grr)

That?  That’s what I feel like with my sleep schedule right now.  And I keep having to jump back on the wheel because, well, you can’t go without sleep.  Not to mention, a girl’s got to get to her doctor’s appointments and her classes.

I’m also dealing with what seem to be fairly typical Lyme symptoms.

Rage.  Oh my god the rage.  There are things going on that it’s perfectly normal to get annoyed about.  I’m not annoyed about them.  I want to verbally eviscerate my fiance because the house is messy.  The fact that he’s stressed out to the point of being somewhat emotionally fragile at the moment (which means that I feel like I should be more careful about snarling at him than usual) is producing a very counter-productive reaction: I’m even angrier and want to yell at him even more.  It’s at its worst late at night, which would of course be an especially bad time to yell at him because he’s an early riser and tends to be impressively incoherent when woken up in the middle of the night.

The screwed up sleeping schedule I mentioned is another typical Lyme symptom.

The forgetfulness is…I don’t have words for it.  I sometimes lose track of conversations mid-sentence.  I’ll be saying something and then all the sudden I have NO IDEA what I was saying.  It’s exasperating and it makes me look stupid.  It also frustrates the ever-loving crap out of me.  I also can’t remember anything I’m supposed to do, nor can I remember to ask my fiance to do things when he’s awake, which means that I crawl into bed at ungodly hours of the night and wake him up to ask him to do something, which he has trouble remembering (because the poor guy was asleep), which only adds to my rage issues.  Completely unfair, and I KNOW it’s completely unfair.  Which only makes me angrier.  *facepalm*

I suppose I should add a psychiatrist visit to my to-do list, to deal with the anger, and I know I need to see my sleep specialist, only I never remember when his office is open and I’m free to call.

All in all, the collateral damage from this damn infection is impressive and frustrating and ye gods do I need this thing to go away.  I mean, I’m not normally a tranquil person, and I tend to have bad sleep patterns and a bit of being scatterbrained, but this?  This is just absurd and unlivable.

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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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WHOMP

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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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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