Moving along…

I saw my rheumatologist last week. I still don’t have an official diagnosis, but thankfully I DO have medication. I mentioned before that I’ve been on prednisone for a while now. Prednisone, while it treats inflammation, does not do anything to deal with the immune system malfunction that is CAUSING the inflammation. It also has a host of really lousy side effects – the hot flashes, emotional instability (including great anger – I think we’ve all heard of “‘roid rage”, and prednisone can definitely cause it!), weight gain, fat deposits that alter the shape of the body (usually rounding the abdomen greatly and adding a ‘hump’ of fat on the upper back), ‘moon face’ (the face getting all puffy and round), bone degradation, and all sorts of other fun things. The longer you’re on it, and the more you take, the greater your side effects. The original dose I was on did not seem to help, so my rheumatologist had approved doubling it. The week before I saw my rheumatologist, things were getting worse and worse. The on-call doctors at his practice increased my prednisone twice in response to my phone calls, which meant I was taking three times what he had prescribed when he started me on it. Lucky me, that was enough to trigger the ‘moon face’ effect. If you saw only my face, you would think I had doubled my weight – I have an enormous double-chin, and my face just LOOKS fat. I don’t think I’m a vain woman, but it was quite upsetting to see all the same.

My rheumatologist said that the latest two increases meant I was taking far too much, and lowered me down to twice my original dose.

He also started me on Plaquenil. It’s one of the first-line medications for rheumatoid arthritis, though it’s used in other rheumatological disorders. I suspect that at this point, the working theory is that I have seronegative rheumatoid arthritis. It’s a good match for my symptoms – I’m affected most in the small joints of the hands and feet, and in my spine, and that combination is not uncommon in RA. All of my blood tests other than indicators of inflammation and a very generalized indicator of autoimmune activity have come back normal, so whatever I have, I have the seronegative version of. At that point, it’s a clinical diagnosis, purely based on what the doctor sees in terms of my symptoms and how he thinks it fits together. It is entirely possible that at some point in the future, something will change and the blood tests will show precisely what’s going on. That happens for some people; for others, the blood tests are never conclusive.

So I’ve been on the new medication for just over a week. While apparently it has nasty gastrointestinal symptoms for some people, I have so far been spared that, despite my usual sensitivity to such things. I don’t wish to jinx anything, but the swelling in my fingers is already down slightly. I’m now back to normal, but I’m definitely slimmer. And the moon face effect seems to already be coming back down slightly.

Unfortunately, the muscular problems in my back are not succumbing to my efforts to help them. I did figure out that I seem to be exacerbating my troubles by using my iPad when I’m laying down. The worst of my muscular problems are between my shoulderblades at this point, and those muscles are working when I hold my hand up to type or navigate on the tablet. My physical therapist had some ideas about better positions to set myself up in, but then the tablet is far enough away that I can’t see what I’m doing! I think I may just have to accept that I can’t spend much time online until my back is doing better.

That’s really all that’s going on around here. I have projects that are just waiting for me to have my hands and back behaving at the same time – a hair clip I am repairing the finish on, a sweater that needs to be sewn together, and I’ve joined in a hair craft exchange for the holidays. So far, the only thing I’ve been able to do is knit, because neither my hands nor my back needs to be at its best for that – it doesn’t put as much pressure on my thumbs as sewing, and it doesn’t require sitting somewhere other than my couch the way other things I’d like to work on do.

I’m enjoying one of my classes, and the other two I’m just trying to keep my head above water. I’ve missed SO much class, the professors in those two classes would be well within their rights to refuse to let me take the exam, but it seems like both of them are willing to let me slide. Thank heavens. I don’t find the classes particularly useful for one of them – the cases are pretty self-explanatory – and while I do like the other class just fine, I think I just don’t get as much out of class as most people do anymore. I’ve been at this so long that I’ve gotten pretty decent at teasing out what’s important in decisions, I think. It’s funny, it’s much harder (to me, at least) to tease out what’s important given a set of facts than it is to tease out what’s important from a case. A case is all about principles, where a fact pattern is more like…matching recognition. You have to be able to pick out which pieces are like cases, and then apply the principles from the right cases. I hope that makes sense, I’m not certain I’m explaining in a way that makes sense to someone who doesn’t work in this field. It’s one of the reasons that there is talk about how useful law school really is. That, and unless you do a clinical of some kind, you learn very little about what the process actually looks like. Okay, someone comes into their office and gives you a bunch of facts…so what do you do then? What should this form or this request to the court or this motion or this filing look like? What order do you do things in? Who do you need to send things to, and how? And people are taught perilously little about how to bargain, which is often at the heart of legal work. Very few cases of any kind actually go to trial; most settle. And if you don’t know the very basics of how to bargain, how on earth are you going to get your client what they should get? I see this in exercises, where instead of giving an opening offer, someone will give a range of what they might accept. No, no, no, you start at the best end of your range and know in your head that you’re willing to accept less, and then see what their opening number is, and then both sides work towards a compromise, if possible. If you give them a range straight off, they’re going to START at your low end of acceptable and try to work you down from there. I never realized how much shopping at places where one haggles could be helpful professionally until I saw how very badly some people do at this sort of thing.

Anyhow, enough about school.

The fiance and I need to do something to insulate this place – the heat keeps cycling on, and admittedly it’s quite cold out tonight, but this is expensive. Unfortunately, we have electric forced air heat, which is terribly pricey. I don’t even want to think about what our heating costs are going to look like this winter. At least with my horrid prednisone hot flashes, we’re keeping the apartment relatively cool (64 degrees, where I normally am uncomfortable under 68 or 70), which I suppose is probably helping matters. I am realizing that the big bay window that I love in our living room is going to be a horrible heatsink all winter, because we can’t really put window film up to help keep it warmer. I guess we’ll just have to do all the other windows in the apartment, and get draft-blockers for the doors we rarely use (we have 3 outside doors – one to the ramp, one out of our kitchen, and one into the building), and just hope that helps keep us warmer in here. I definitely expected a place that was extensively rehabbed less than a decade ago to be better insulated! The worst part is that the room I need to be the coolest is the room that is consistently the warmest. I have the worst time with the heat flashes at night, so I like the bedroom cooler, but the heating system does not agree with me. So it’s sweaters and blankets in the living room for us. Ah well, at least we aren’t worrying about keeping guests comfortable, just us and the pooches.

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Well, at least there’s news, at last?

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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Still Lyme-y

So I continue to be sick.

I finished my course of antibiotics some time ago. Within a week it was clear I was rebounding. I’ve been measuring my wrists and trying rings on my fingers, so I have objective measurements that show that the antibiotics helped and that things got worse when I was off of them. My GP is very, very popular, so it was hard to get in with him. I saw other people in his office, and they didn’t want to continue treating me with antibiotics. They wanted to send me off to specialists – first the rheumatologist, and if he wasn’t happy treating the probably-Lyme, then to Infectious Diseases. Certainly, they didn’t want me in their hands.

I finally got in to see my GP yesterday. His take on the situation is that either I have Lyme or I have some other systemic infection that is causing generalized inflammation. Regardless, the antibiotics bring down the inflammation and give me ENORMOUS benefits to my quality of life, so he is happy to continue treating me with them. Thank god. As of yesterday evening, I am back on the amoxicillin. We talked about options, and agreed that A) I am going to see an Infectious Diseases specialist and B) we are going to use an IV antibiotic. For treating Lyme, the oral drug of choice is doxycycline, which I react very, very badly to.* Because of that, I am taking the second line drug, amoxicillin. According to my GP, oral doxycycline can be as effective as the IV drugs (though that doesn’t match up with my recollection from researching this – my recollection is the IV drugs beat doxy), but amoxicillin cannot compete on the same level. That’s why he agreed to the IV antibiotics.

He’s still treating me relatively conservatively – not really high doses, not really long courses – but given all of my other conditions and my general sensitivity to medications, I think it’s for the best. If this round doesn’t take care of things, we’ll have to reconsider what we’re doing, but by then we’ll have a specialist on board to advise. I can only hope that the people in the Infectious Diseases department believe in Lyme as a devastating, long-term illness that can be hard to wipe out rather than the image some organizations present, where Lyme is supposed to be easily knocked out with a single, relatively short course of antibiotics. I do not want to continue living like this – I am in an enormous amount of pain, to the point where it’s hard to care about anything because existing hurts. Even lying on my very soft, comfortable bed hurts – if I lie on my side, my ribs and oblique muscles on the side that is up feel like they’re getting worked or stretched very hard and become painful (which makes me need to flip often), and if I lie on my back, my back and neck start complaining. And lying down is generally the most comfortable thing I can do. Right now, I need to wake up at least a half an hour before I need to start moving, so I can take a pill for the pain and wait for it to kick in. Best of all is when I wake up 2-3 hours before I need to get up: I can take the pain pill then, and go back to sleep. If I’m lucky, I’ll wake up again a little while before I have to start moving, because for some reason, the pain fades slowly if I am simply awake. I have no idea why, I only know how it works.

Blah. All of this pain, this frustration, and I have other things that need to be dealt with. I need to see my gastrointestinal specialist because my stomach has been very, very bothersome of late, and I need to talk to my sleep specialist because of a medication mix-up. I need to make an appointment with the Infectious Diseases person, who I am quite nervous about. I need to decide whether or not to cancel the rheumatologist appointment I have for Monday (my instinct is to cancel). I need x-rays and possibly an MRI done of my neck because I have pinched nerve symptoms; for that matter, the headache people wanted an MRI of my head, too, due to my headaches.

All of that, and I am sitting here in a cloud of smelly dog-fart, writing this post, because…well. Because I know people come here to read what it’s like to live my life, with my conditions and my service dog and my dreams and my fiance. Because on some level, this gives me a feeling of having some meaning, if only to get people to understand a bit more about what it’s like to be disabled but not in one of the ‘typical’ ways. (I tend to think of being blind, deaf, and having some form of paralysis as being the better understood forms of disability, though I know that even with those, the understanding of outsiders is horribly inaccurate.)

Nnf. This rambling, wandering, probably less-than-polite post is brought to you by probably-Lyme. (Why the hell is it always probably-something in my life?! I swear, not a single condition that I’ve got was easy to diagnose, and every stinking one of them was either missed or nearly missed by at least one medical professional before I found someone who got it, and then started getting the treatment I needed.) Anyhow, I think that’s intended to be and explanation, and perhaps something of an apology. I know I am neither at my best nor writing as often as I would like (by a long shot on the latter at least!). I am, nonetheless, here. That has to count for something.

*It starts with flushing in the face and on the chest, then moves to a kind of dazed confusion. Finally, my tongue and throat begin to swell, which is called anaphylaxis. It’s one of the most dangerous reactions to medications that exists because it will eventually make it impossible to breathe. Especially in someone with asthma (like me), there is potential for the swelling to go all the way down into the lungs, at which point you are DEAD – nothing they can do. Fortunately for me, anaphylaxis set in quite slowly, so they were able to get antihistamines and adrenaline into my system before my breathing was even labored.

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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.

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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.

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What is with some people?!

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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It seemed like a good idea…

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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Test One-two-three (anything but that!)

(Why yes, that title is a Rent reference.  I ❤ the show and the movie)

I have medical testing coming up that I am not looking forward to – some because I think it will be unpleasant, some because there are no good answers.

The one I expect to be painful is an ultrasound of my hands.  I remember how firmly they press on say your abdomen for ultrasound imaging; that kind of pressure on my hands would be AGONY.  I suppose there aren’t really good answers on this test, now that  I think about it.  Either they will find inflammation that backs up the theory that I have something like rheumatoid arthritis (RA), or they’ll decide there isn’t inflammation there and we don’t know why my hands hurt nor why they look swollen.

I’m supposed to have an MRI of my brain done, because my former headache specialist worried that I might have pockets of fluid building up in my brain, due to the kind fo headaches I get on a near-daily basis now.  Again, there aren’t really any good answers – if nothing shows, then we have to keep investigating to see what is causing the headaches.  If it does show, that means brain surgery.  And oh yeah, having a MRI is no walk in the park.  This one will be with and without contrast, so they will fix my head in a specialized vice that partially blocks my vision, put me head-first into a long narrow tube I barely fit in, and then there’s all the noise and the vibration (which hurts a lot!).  As if that wasn’t bad enough, they’ll pull me about 2/3 of the way out so they can put in an IV and inject in the contrast material, then put me back in the tube.  I’m mildly claustrophobic, and both the head vice thing and taking me out and putting me back in considerably aggrivate the way I feel about it.

Then there’s a rotational CT scan of my neck and where the head meets the neck.  I have symptoms that could match up to craniocervical instability (CCI), which is vastly more likely in people who have connective tissue disorders like mine.  If I don’t have CCI, then we have a question about what is causing a lot of symptoms that include pinched nerve symptoms in both my arms.  If I do have it…whoa.  Surgery, but that surgery might take care of a slew of issues that have affected me over the last 4 years.  However, I won’t be able to get the botox injections into my neck that they think would stop my migraines because my head would already be unstable enough on my neck that they would be worried about destabilizing it more.  The test itself isn’t too onerous, at least – I turn my head all the way to one side and go through a mechanical doughnut rather quickly, then turn my head to the other side and go through it again.

I also need an MRI of my mid-back to see if the maybe-RA is attacking my spine or if the pain is coming from something else.  This is another relatively painless test, but the results are something I’m not sure I want to know.  If it is the maybe-RA, I suppose they’ll treat more aggressively.  If it isn’t…well.  We have to figure out what’s causing new back pain, how and why, because this back pain is neither normal nor tolerable for me.

I don’t really know what I want at this point.  I am tired of feeling like crap, so I would like to feel less like crap, but I don’t know what test results or medications will offer that solution.  In the meanwhile, I guess I keep on keepin’ on.  It starts to feel a bit surreal sometimes, and other times it feels like I keep going out of habit or lack of palatable alternatives.

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Up? Down?

One of the things that comes with having chronic illnesses is new medications.  Getting a new medication is this awful mixture of hope and fear.

You hope it works.  You really do, because you’re sick of the pain and other symptoms.  At the same time, you’re often getting a new medication because either an old one stopped working or because the side-effects were intolerable, and you worry that the new medication will be more of the same.

I’m starting a new medication for the maybe-it’s-RA that has been plaguing me for a while.  We discovered today that it may have moved into my spine; I’ve had pain there for a while, which a horrid nurse practitioner dismissed as being because I’m fat without even looking at it.  I mentioned it to my rheumy today because it seems to be limited to my spine itself and it doesn’t respond to stretching or exercises, only to heat (well, and it gets cranky when I sit up or stay in the same position for long).  My hands, wrists, feet, and ankles are all crying out right now, and my left knee has warned me that it is displeased with me.

So you see, on the one hand, I am desperate for something to help with this.

On the other hand, there’s a reason I stopped the other med.  It worked quite well, and the reduction of pain was astonishing.  But it had side effects I couldn’t tolerate.  I already have stomach problems, and it exascerbated them.  My stomach hurt terribly, and I was nauseated and had heartburn.  I could hardly eat, and felt quite miserable all the time.  I don’t want to go through that again – my stomach is finally behaving itself and I’d rather let it be!  But I need relief from the maybe-it’s-RA, especially as that can do permanent damage if it’s not kept in check.

So I sit here, staring at the bottle and wondering, will this work as well as the last one?  Will it have fewer side effects?  I can only hope.

I go through this every time I add a new medication, hoping it’s effective and that the side effects are tolerable.  Can you imagine doing that over and over and over?  As each new condition rears its head, as each medication loses effectiveness or develops intolerable side effects, a new medication has to be attempted.

Wish me luck.

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Working on Chronic Illness Time

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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