Official

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.

That was interesting…

A couple weeks ago, I got an ear-and-sinus infection.  It was a pain, I felt like crap, etc.  I went to my GP, and because he’s used to how infections do a number on me, he was willing to give me a relatively long, strong course of amoxicillin to fight the infection.  A funny thing happened, though.

About 3 days into the antibiotics, I started being more exhausted, but strangely there was less pain in my joints and muscles.  As I continued through the antibiotics, this continued – my joints and muscles felt better and better.

I got curious and googled to see if the antibiotic was one used to treat Lyme disease.  You see, my friend Sharon from the blog AfterGadget, who has chronic Lyme, pointed out a while ago that my symptoms sounded like Lyme.  Amoxicillin is the second-line drug used for treating acute Lyme disease.  The fact that I felt so much better pain-wise is, I think, the clincher on a clinical diagnosis of Lyme disease.  I haven’t had a lab test run yet, but to my mind that’s somewhat irrelevant.  You see, the lab tests for Lyme are impressively inaccurate and prone to false negatives – the studies say that the Western Blot test, which is the most commonly run test, gives false negatives to 30-50% of people who actually have Lyme.  There are better tests, but they’re only done by two labs.  I’ll be asking my doctor to write for one of those, but I already have the paperwork for a Western Blot (and my insurance covers testing 100%), so I’ll be getting it done anyhow.  The fact that it misses a lot of cases doesn’t mean it misses all cases, so it’s worth doing as it is less hassle than getting one of the other tests run.

I’m actually really happy about finding out I almost definitely have Lyme.  While it may take a couple of months to totally clear this out of my system, this is something that can go away.  To me, at least, this is enormously good news.  Way better than adding another hard to pinpoint, hard to manage condition like a variety of arthritis to my long list of diagnoses.

Silly Dog

I thought you guys would appreciate this one.

We’ve had a bit of a mouse problem here for the last several months.  Our house is pretty much spotless on food (everything is now in plastic tubs because the damn critters get into everything).  We’ve plugged mouseholes as we find them, we’ve set traps and killed a number of the little beasts, but still they come back.  We suspect one or both of our neighbors is less…rigorous…in their clean-up attempts.

Anyhow, the mouse problem is background.  It has turned up a funny tendency of Hudson’s – once he hears or sees something somewhere, he continues to expect it to be there, whether he has reason to or not.

Three hours ago, there was a mouse under the far end of the loveseat.  I heard it, and Hudson at least heard it – he may have also seen it.  He has periodically stared at or sniffed that end of the loveseat, and continues to do so, even though there has been no further evidence of mouse.  He’s just convinced that it must somehow still be there.  He does this ALL the time, and he’ll end up staring at places where nothing has happened for hours, as if he’s willing the mouse to return.

For a smart dog, he’s a real dummy sometimes!

I can has birthday present!

The present my fiance bought for my birthday arrived today.  I am now the owner of a bowed psaltery!  It’s the historical precursor to the violin and other bowed stringed instruments.  I’ve wanted one for a good 6-8 years now, so I’m very happy indeed to have it.  We’re ordering a new bow to go with it, as the current bow is a bit hard for me to grip and has synthetic ‘hair’ that doesn’t make for the nicest of sounds.

Physically speaking, the psaltery is a big improvement over a violin for me.  On a violin, you have to be able to press down the strings all the way to the neck, in order to get different notes.  My fingers do NOT like doing things like that – it’s quite painful.  A psaltery, on the other hand, has one note per string.  Want more notes?  Get a bigger psaltery with more strings.

Hopefully I will learn to play this quickly!  I’ll record a sample for you guys, once it’s sounding decent.

Not thankful.

A great many people take Thanksgiving as a time to reflect on what they are grateful for, and how great their lives really are.

I’m not.  It’s the end of Thanksgiving weekend, and I didn’t get more than a couple hours worth of schoolwork done all weekend when I was hoping to get caught up.  My concentration is shit and I keep dozing off over my books.  I may not be allowed to take one of my exams because I missed a ton of class due to this muscular whatever the hell that seems to be tangled up with the arthritis.  While I feel better once I’ve been awake for about 3 hours, that’s longer than I can manage to be awake before class (that is, I can’t wake up 3 hours before class).  Were I to try it, I’d have to stay lying down because I’ve had a very limited amount of sit-up time, and I’d fall back asleep.  I did try once.  Fail.

I’m tired.  I’m sick – I have something that has completely stuffed up my head and blocked up my ears, and I have a GI bug giving me diarrhea.  Monday, I fainted and we don’t know why – I wasn’t having any dysautonomia/POTS symptoms, I just turned my head to the right, had shooting pain, and woke up slouched against the couch.  On Tuesday, Hudson did the unbelievable – he pooped in the building where my physical therapists’ is.  My sleep schedule is utterly and completely screwed up.  I keep forgetting to make the phone calls I need to make to get doctor’s apts and other things set up.  Not getting those appointments means I don’t get help with the things that are causing problems.  It’s a lovely catch-22.

The arthritis-of-some-kind is improving dramatically, but the improvement in my joints has made something else very clear.  I think at the beginning, about 1/2 of my pain and loss of motion was muscular; at this point, I’d say that’s 3/4 of what I’m experiencing.  I suspect I couldn’t separate the two out because with EDS, the pain is as much in your muscles and surrounding ligaments as it is in your joints themselves.  And it doesn’t improve.  Heat makes it very slightly better, motion starts as agony but eases into more comfortable motion.  Rest just means that I’ll be in pain when I start moving again (though if I do not rest and try to move all the time, the result is even worse).  I don’t really know what to do about all of that.

I forgot to get some critical paperwork filled out, and the deadline was 2 weeks ago.  I’m not sure if they’ll be able to work with me.

I had this dream several weeks ago, that I was diagnosed formally for the arthritis.  I quit law school, and between us my fiance and I put together a shop where I could do just about anything artistic I wanted.  It was quite a nice dream.  The best part was that I no longer had massive deadlines hanging over my head.  I’ve fallen behind on everything and blown every deadline since this all started in March.  I’m tired of always waiting for someone to get upset with me because I’m not doing enough, not present enough, et cetera.

It’s funny, I dream about not going to law school and I’m not sure I want to finish, and yet my first response to an email that suggested I might not be allowed to finish a class (and possibly more than one)  was to be so deeply upset that I was wildly nauseous and very upset.  I am less upset now, and the nausea is mild compared to how it was, but I still am loathe to accept an external force causing me to quit rather than choosing it for myself.  Because I’ll admit, it is a possibility.  It’s just not one I like much when I don’t have a choice, and when I have gotten So Damn Close to finishing law school.

I’m not saying I don’t have things to be thankful for.  I do.  I’m just refusing to be a Pollyanna and pretend that those things are in and of themselves enough to make life all good right now.  My fiance and my dog are wonderful, my lawschool has been pretty good about working with me, I have health insurance and a roof over my head and a car that functions, and all of these are good things.  Just life as a whole is…on the rough side right now.

Bleh.  My stomach is roiling again, and hte muscles of my arms, legs, back, and abdomen all ache and hurt.  This kind of pain makes me think of over-twisted rope, ready to snap.  *sigh*

Teehee

Hudson must be having a good dream – he seems to be chewing on something in his sleep. I keep hearing click-click-click of his teeth tapping together.  Dogs are so funny!

Thank you.

Alan,

I know you will probably never see this blog, but I wanted to put this out here.

This afternoon in the ER, when they wanted to put in an IV to draw blood, I got hysterical.  My last trip to the ER involved what was even for me a rough time getting an IV in.  I was borderline phobic before, and have crossed into the real thing once again, I think.  I was when I was younger, and being re-traumatized didn’t help.

Without meds, you talked me down and distracted me, and hit a vein on the first try with minimal pain.  Thank you for NOT treating me as if my reaction was unreasonable or inconvenient.  That basic kindness and decency is so deeply helpful in situations like this.  It seems to be much the character of the ER you work in, but this was an unusually strong exemplar of just how awesome you guys are at this ER.  There’s a reason we don’t like to go anywhere else – I get treated compassionately, kindly, and thoughtfully here.  There are never issues with my service dog, and people actually care if I am okay.  ERs like yours seem to be a sadly rare phenomenon.  I can’t tell you how often I have been treated as if I was nothing more than a difficulty in other places.

So thank you.  Thank you for caring enough to not want me falling apart and sobbing.  Thank you for making this a non-traumatic experience.  But most of all, thank you for being patient and kind.

 

(P.S. – if you’re wondering about why I ended up in the ER, it’s kind of an odd story.  You see, this afternoon, right after I posted my most recent post before this one, something weird happened.  I had had a headache since last night which was neither a migraine nor a tension headache, as treatments that work on those had no effect on it.  I turned my head to the right, heard and felt a crack in my neck, felt shooting pain going to my left armpit and down the left side of the spine, and passed out.  I came to less than a minute later, dizzy and nauseated.  A little while later, I got to my phone and called my doctor’s office, where they advised me to go to the ER.  I threw up shortly after that, called myself a cab, and decamped off to the ER.  They did a little bit of testing (ekg and bloodwork), poked me a bit, and decided to send me home.  Apparently, I’m not urgently in trouble, but they do want me back in with my GP to try to get to the bottom of this.  Precisely what I needed with exams starting in two weeks, ah well.  This will certainly be…entertaining.

You expected a tip for that?

Right now, I’m on a combination of meds they don’t allow me to drive on.  It’s annoying, but before that my fiance was doing most of the driving anyhow, so the only change is that now I use cabs when he can’t give me a ride.  On the whole, it hasn’t been a big deal.

Friday, I called a cab to take me to physical therapy.  The cab got here and I walked out to it, with Hudson, a novel, and a change of clothes for exercising at physical therapy.  When I get to the cab, the cabbie is talking on his radio, and he locks the doors right before I try to open them.  I heard the sound of the locks going, and I assumed he was unlocking the doors.

He gets off the radio, and gets out and announces to me that I needed to tell the dispatcher that I have the dog, and that he has to put newspapers down on his seat.  He then spends the next 5 minutes scolding me for not having something to cover his seat.  He tells me that the city government will fine him, and that the other driver of the cab will give him a hard time over the smell (from my very clean dog?), and goes on and on and on.

Look – I’m disabled.  By the time I have all the things I need to be running around on a chilly day and waiting for people and doing physical therapy (or school, for that matter), I’m about maxing out my carrying capacity.  I can’t bring along one of the rugs I put down for Hudson when I have someone else to carry things.  And I don’t have a responsibility to do so.

We get to my physical therapy location, and I use the credit card machine in the back, and then he asks me if I am going to tip him.

No.  I do not like people who expect me to do all kinds of bending over backwards for them because I have a service dog.  I do not tip people who scold me.  No way.  You want a tip, you treat me with respect.  I would not have objected at all to him putting newspaper down for the dog, even though it made Hudson uneasy to lie on crackling paper.  But scolding me?  Uh-uh.

“He hit my penis with his ear!”

…yes, my fiance actually said that.  It actually happened.  You see, Hudson has allergies, so he has to take medication to manage them.  Typically, my fiance stands behind Hudson, holding him and opening the dog’s mouth, and I use the piller to shoot the pills into his throat.  This puts Hudson’s head right next to my fiance’s crotch.  Hudson has had itch issues, which make him shake often…and thus, my poor fiance’s crotch was whacked.

Sadly, it’s happened twice.  In his words, “My penis failed its saving throw versus the dog’s ear.”

Other awkward things that happen when you live with a service dog…

Hudson has gone to ‘get’ my fiance (a command that typically involves jumping on him) when said fiance was lying down, and put one of his front paws on my fiance’s groin.

That wasn’t the first time he’s done something…interesting when sent to ‘get’ my fiance.  Very early on, ‘go get <fiance>’ just meant making contact of some kind – usually Hudson nosed my fiance.  My fiance was asleep, and because we’d just moved into the house (and my bedframe had been destroyed by people at my old apartment), we had the mattress on the floor.  I told Hudson to go get my fiance, and he decided to lick my fiance’s armpit.  I, of course, started cracking up.  My fiance was very…confused.

Finding doghair in your crotch (no wonder it was itchy!  Disturbingly frequent discovery, however.)

Getting nosed on the nipple (agh, he does that so often)

Going to step out of bed and finding that your toes are nudging the dog’s crotch (or that you’ve just plopped your feet ON him)

The dog bowing in front of you…with his hind end pointing at you, like he’s presenting his ass to you.  Somehow he always does this one with his tail curled up and towards his back, which just highlights his anus.  (Unfortunately, he rather often farts in that position…)

And speaking of farting, Hudson has this tendency of farting when we’re in the bathroom.  I don’t know how much of my noticing it is confirmation bias, but especially if I’m um on the toilet a while, I’ll hear him passing gas.

Hudson loves standing right in front of me, facing towards my right (where the coffee table is).  Thing is, he stands really, really close, leaning against me, and our height matches up so that his sheath rests against my left knee.

One more quote from my oh-so-amusing fiance: “His tongue is relentless!”  (darn dog makes brushing his teeth difficult by working very hard to lick the toothpaste)

Recent silence…

I do apologize for how little I’ve been posting lately, folks.

See, my joints and muscles have been troubling me something fierce.  I wake up in agony, and an hour or so later I’m only just able to move about without flinching at every motion.

It’s not helping my state of mind that they’re having trouble pinning down what is causing this.

My rheumatologist is now saying that I have ‘some form of arthritis’, but he doesn’t know what’s causing it.  I’m so frustrated!  I thought that scan, that showed thickening of the lining of the bones everywhere they looked and ‘flow’ (active inflammation) in one joint would be enough to get a diagnosis, but apparently not.  Right now, there are several ideas being tossed around.  The arthritis might be caused by hypothyroidism, because I was very low when I got checked a few months ago.  That one just made me roll my eyes, because here’s what happened: I was trying to take my synthroid in the morning, like you’re supposed to, and I forgot more often than I remembered.  So I stopped that and started taking it in the evening again, at the dose I’ve been on for quite a while, so by now, my thyroid should be back in balance.  If my thyroid balance is restored, any symptoms it caused – like this theoretical arthritis – should be clearing up (and indeed, the other low thyroid symptoms are).  I think he’s thinking psoriatric arthritis could be on the table, as he wants me to get a dermatologist to look at the rash/breakouts on my arms.  I’ve only been asking him about those rashes (which started a few months before the joint problems and have slowly spread and gotten worse) since the first visit I saw him back in April.

I’m also frustrated because the meds aren’t helping much.  He has me on salsalate, but I have a delicate stomach, so I can only manage 2/3 of a normal dose.  Mobic didn’t seem to help much at all.  Nabumetone made me throw up, so I wasn’t really on it long enough to figure out if it worked.

What’s especially frustrating is that the first time I was on salsalate, it was a wonderdrug – taking it for a day showed a significant decrease in the swelling and pain in my hands.  Now…now it’s a lot harder to see if it’s improving things at all.

*sigh* So I’m sorry I’ve been so silent, but it’s because I’m not well and I’m short on good news.