I’m sorry, we’re all out of good answers

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

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

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

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

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

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

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

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

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Full-on Whimper Mode

Well, whatever this possibly-rheumatological condition is, it has me in full-on whimper mode.

I wake up unable to close my hands all the way, between the swelling and the pain.  I have very limited use of my hands all day.  Typing is particularly painful; holding books is also bad.  Perversely, knitting using lightweight yarn seems to not be problematic.  I am very glad about that, because I have gotten so accustomed to knitting (or spinning or crochetting) while I watch television that I feel not adequately entertained if I cannot do something with my hands.

I have incredibly delicate, slender, long-boned hands, wrists, feet, and ankles, but I’m swollen enough that my fingers look like normal-people fingers (about 1 1/2 ring sizes bigger) and my wrists are about 20% bigger than they were before.  My ankles are almost as swollen; more like 15% bigger.  My feet look huge to me and are so tender that I can’t wear shoes for any extended length of time.  Standing is painful.  Whatever it is is moving inward, now attacking both knees, my bad hip, and my shoulders.

I see a rheumatologist next week, and hopefully will be able to begin treatment shortly after that.  In the present, though, I HURT.  I hurt all the time, though the pain is at its worst early in the morning and late at night.  I’m sleeping more than usual because at least asleep, I don’t hurt as much.  The pain is bad enough that it is invading my dreams, which doesn’t tend to happen to me unless the pain is severe.

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Pain attack

I hope you will all forgive me if I have been quiet or not quite seemed myself lately.  You see, I am living with a pain attack.  My doctor and I are in the process of figuring out what it is.  So far, we have eliminated thyroid, blood sugar, infection, and cancer.  Still potentially on the table is auto-immune disorders, though I would have to be what they call subclinical (that is, the blood tests do not show certain types of activities).  My personal pet theory is Sjogren’s syndrome, which is a type of auto-immune disorder.

It hurts.  I type in short bursts because it quickly becomes too painful for me to type.  It makes me very grateful that I type extraordinarily quickly, else I fear I would never get a chance to say anything.  My hands feel like someone stepped on them, or like I missed a nail and hit myself with the hammer, that kind of intense but dull aching.  My feet are so tender that some nights, standing long enough to feed Hudson is a torment, with much the same kind of pain..  I am swollen and having pins-and-needles sensations in my hands and feet, and sometimes into the forearms and the lower legs.  I think it is also attacking my bad knee and bad hip.  My hip feels like there is a jagged shard of pain stabbed into me, and not only does it hurt where it is lodged, the pain is seeping into the general vicinity.

I am upset, and a little scared.  There are other symptoms that may be related that started a little earlier.  My memory is terribly interrupted, and I cannot remember things that I normally would remember with great clarity.  My mouth and eyes are painfully dry, but my throat is full of thick mucus, which sometimes gives me a little trouble with breathing.  I am having lower GI pain and other troubles that may be related to all of this.

In three weeks I see a rheumatologist.  In the meantime, I will be talking to my doctor in the hopes of trying something like steroids in the short term to help with all of this pain.

I suppose what this all adds up to is that I feel lousy and I hope you will all keep me in your thoughts.

~Kali

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On becoming disabled…

While I’m disabled by chronic illness, I have kind of an unusual story for that. My transition from able-bodied to disabled was much more like that of someone who’d been in an accident. Fine one day, not so good the next day, and really awful for the third day…and staying that way.

I went more or less the typical stages of grief, though a little out of order – denial, depression, anger, and finally moving on to more-or-less acceptance. I really never did much bargaining; the closest I came to that was hope that we’d find the right medication and I’d be cured. Obviously, as I’m writing this identifying as a person with a disability that involves chronic pain and fatigue, that didn’t happen.

I’d had a weird episode of pain in my joints in the fall semester of my first year away at college. It lasted about 4 weeks. We never did figure out exactly what was causing it, except that my anti-nuclear antibodies were up, which indicates some auto-immune action. It went away on my own. Remembering that, I spent the first several months in denial about what was going on, and believing it’d suddenly get better like it had years before. Yeah, that didn’t happen either.

I think it took me 3 months to accept that it wasn’t getting better, and then I went ‘well, if I’m not getting better, I’d better settle in and deal with it.’ That was when I put in my paperwork to get a service dog, though I got my first cane a couple weeks before then. I was still shocked over the whole thing, and some part of me still believed that we’d find the right medication and it’d make me a lot better, even if it didn’t cure me.

I was in such a state of shock at that point that I was perhaps too honest about my illness with people who weren’t prepared for it. I didn’t try to hide that I had severe, constant, unrelenting pain, and that some days I was too damn sick from pain and fatigue to make it to class. That bit me on the ass pretty badly.

I think it took me about 6 months to accept that we could only do so much about the pain. That was when I got put on pain meds 24/7, including an opioid and something to deal with neural pain. I improved a fair amount at that point, and got back most of the use of my hands that I had lost. Even though I accepted that pain relief was only going to do so much, I still hoped for the magic pill cure. It was that first year when I gathered several of my specialists – the neurologist who was investigating what turned out to be a side effect of one of the first medications I’d been put on, the urologist, the gastroenterologist, the pain specialist.

The months after I first got sick, a lot of people I knew started suggesting it was Ehlers-Danlos syndrome. I didn’t realize I was as hypermobile as I am, and I don’t have the classic stretchy skin, so I shrugged it off and decided it couldn’t be right pretty quickly. Silly me, huh?

But it kept being brought up, and as more and more of my body had trouble – my bladder, my GI, so on – I looked at EDS again that summer and I thought ‘it’s possible’. By the middle of the fall semester, I finally decided that it was likely enough to look into a specialist. My GP had a similar reaction to mine at first, though she thought that the distinctive facial features associated with vascular EDS (the rarest of the 3 most common varieties) was seen in all people with EDS, and I definitely don’t have it. One of the features is thin lips, and I have rather full lips, so it wasn’t a match. She also didn’t realize that I have grey scelerae (that’s the whites of the eyes – in people with EDS, they are often blue or grey, because our scelerae are thinner).

That summer, my neurologist wrote for a permanent placard on the same visit that he told me whatever I had was not neurological, and he was sorry he couldn’t help me.

I got sent to a rheumatologist somewhere in that first year, and he couldn’t tell me much except that my troubles weren’t auto-immune. The neurologist and rheumatologist both not being able to help was both frustrating and hopeful – it said I might still have something a pill could cure, instead of something progressive.

I think I stopped believing there would be a miracle cure only when I was finally diagnosed in the winter of my second year of law school. I can’t tell you how crushing it was to have that be true. On the one hand, I was relieved because it meant I didn’t have something that was progressive to the point of killing you, and some of the possibilities we went through were pretty damn scary. On the other hand, I was disappointed because I knew that bracing and improving my pain medications were all we could do – I’d always have this, no matter what medications I took.

I suppose I started identifying as having a chronic illness very early on. Within a couple of weeks of the start of the chronic pain and fatigue, I figured that having this twice (remember, I had an episode of joint pain and fatigue my freshman year of college) probably meant that there was something bigger going on. I don’t think I started identifying as having a disability until about a year after I’d say I developed that disability. I wasn’t certain it was permanent until after I went a couple hundred miles to see a doctor who was well-known for contributions to the understanding of EDS. (Incidentally, I saw someone in my own city first who was supposedly an expert in Marfan’s and EDS, who misdiagnosed me and treated me badly.)

If you were to ask me to give a single adjective to describe becoming disabled, I’d say it’s frustrating. Yeah, there’s a lot of grief involved too, but to me, the single greatest emotion I have towards my disability is frustration. Frustration that I’m injured again. Frustration that I’m missing things due to pain and fatigue. Frustration that I can’t do things I used to. Frustration with each new piece of adaptive equipment I need to get along. Frustration with the weight caused by my illness and the medications that treat it. Frustration with society. Frustration with doctors and the medical system. Frustration with my health insurance. A ton of frustration, which seems to be more like a landslide in that it keeps growing as it goes along. A few stones at the start; a cataclysmic crushing weight of rock and earth at the bottom.

For me, a great deal of what is necessary to be happy as a person with a disability was learning to deal with that frustration. It still hits me now and again, but not like it did that first two years. It really did take me two years and developing a better support network to get to the point where I didn’t want to throw things most days.* It took me that long to find a place where I really could deal with my disability and the process of becoming disabled without being upset all the time, instead of just putting up a front. It probably didn’t help matters any that while my physical disability was first happening, my bipolarism wasn’t managed well.

Two years. Sometimes it seems like a blink of an eye; other times, it seems like a lifetime. It certainly seemed like a lifetime when I was living with it! At the end, while I’m still not thrilled about the level of disability I’m living with, I’ve made my peace with it. I no longer feel as isolated, as frustrated, or frankly as disabled. I’ve figured out how to make things work, and I’ve accepted that mobility aids (including my furry four-legged one) are part of my life. I do still wish that I was able to do more than I currently can, and I do still miss things like dancing and swordfighting, but I’ve filled my life with other things.

I don’t know if there is some sort of ‘average’ time it takes to get to a good baseline of emotions when you get a disability. I’ve known people who have had disabilities for decades and are still bitter about it; I also know people who seem to have this infinite serenity about it from the start. I do know that unless you’re one of those rare people who really is utterly adaptable and completely unflappable, you have to learn good coping techniques and you have to learn to live a different life than the one you led before. Those are both hard things to do, and damn near impossible to do without support. I think support – friends and family, medical, mental health, and services – are absolutely vital to learning to live a good life with a disability. I think that a lot of people who get stranded somewhere harmful to themselves or others don’t have the kind of support to make the transition, or they lost the support they needed to stay in a good life. Either way could make you pretty bitter and angry, I’d guess.

*Don’t worry, I threw empty pill bottles at my open closet, so the bottles hit my clothing and dropped to the closet floor. Except for the one that bounced off the edge of my closet and hit me in the forehead. Yeah, that was embarassing.

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Sex and Disability

Now, this is a post that a couple of people have been asking me to write since the day I started this blog.  How does sex work when you’ve got a body as unpredictable and undependable as mine?

Well, I have to start by saying, sex only works with an understanding partner.  A partner who wasn’t willing to listen to me could do me a great deal of harm during sex – dislocated joints, torn tissue, sprains and strains, so on.  Shoot, even with a guy who listens well, there’s a risk of doing all of that, but at least a guy who listens well will stop when I get injured and try to help me put myself back together!  An understanding partner also hopefully doesn’t get frustrated when we start and have to stop because of yet another injury.

Right, so we have a partner who’s going to listen to what I say and be willing to accomodate himself to my needs.

Next, the set-up.  That starts with the bed.  No, seriously, the bed matters.  A bed that’s too soft means that the only position possible is missionary, because if I put a hand or knee or…whatever…down on the bed, the pressure gets localized too much.  If I put a hand down, it means that my wrist gets bent back because the heel of the hand sinks down while the fingers don’t.  A bed that’s too hard means that no matter what position we try, I’m going to be hurting afterwards, but particularly bad would be anything that has me on my knees, because my kneecaps can’t take much pressure.  Next come the pillows.  I need a lot of support to be able to have sex.  If it’s missionary position, I need pillows under my knees so that my hips aren’t flung all the way open (or the risk of sublux goes WAY up).  If it’s doggy style, it’s got to be modified, with pillows under my hips and me reclining down on them, because otherwise it’s too much pressure on my shoulders and my hips.

Which kind of leads on to position.  Missionary is the easiest on me, because it means my back is fully supported and my weight is distributed on a large area (as opposed to, for example, woman-on-top, where the weight is all on your knees).  Next I suppose would be a modified doggy style, with pillows under my hips and me resting my weight on them, instead of all on my hands and knees.  Woman-on-top hasn’t been possible for a while, because it is really easy to sublux a hip in that position.  Spooning depends very much on the proportions of myself and my partner – I was only able to get things to line up properly with one ex.  Man sitting up and me sitting down facing him (usually done in a chair, but can be done in bed) presents similar problems to woman-on-top with the added problem (if on the bed) of getting into the position – it’s hard to get my legs to move that way!  (which is a shame – that used to be one of my favorite positions)  In that position, it’s mostly my own enthusiasm that is the danger.

The other thing that comes into play with EDS is fragile tissue.  When your tissues are fragile and tear or bruise easily, it becomes that much more important to have a lot of foreplay and a good lube.  If my partner and I get a bit too eager and hurry things along, I’ll be sore for days because I’ll bruise inside.  I can’t use spermicidal lubes because they increase the likelihood of microtears.  For me, that means irritation and burning and itching and tenderness for days afterwards.  The first time that happened, I completely freaked out and was convinced I had just gotten an STD!  It took a rather panicked trip to the doctor to ease my mind.  The issue with spermicides is frustrating because so many condoms are packaged with spermicides already applied to them.  That’s part of why I always buy my own condoms.  Personally, I don’t do well with most glycerine lubes.  They get sticky as they dry, which can mean small tears in the tissue.  They don’t last long enough, which again can mean small tears.  I tend to use silicone lubes, which are much better on that count.  Oil-based lubes are also okay, but you have to be careful with them because they are not compatible with condoms.  Speaking of condoms, I’m not especially compatible with condoms.  They cause more friction, which with my delicate tissues can mean injuries, especially if my partner has a lot of endurance in the sack.  It’s very, very frustrating when you’re in a relationship where you’ve just started having sex and want it all the time but can only actually have sex once every 3-4 days.

Now, one of the particular issues I have is the combination of my preferred kinks with EDS.  I’m a relatively vanilla girl, which is probably for the best with my body being what it is!  There are really only 3 strong kinks I have, and only 2 really get hazardous with EDS.  The easiest to deal with is being blindfolded – it makes injuries from accidental collision with a partner a bit more likely, but it’s really not all that dangerous.  I also like being tied up/cuffed/pinned down.  This one causes all kinds of problems.  Before I learned not to fight the ties, there was an evening where I dislocated both shoulders.  I’ve also put out my wrists more times than I can count.  Part of what I like about being tied up is that sense of not being able to get away!  Not being able to fight them without injuring myself takes that down a notch, because I always have to be mindful of my joints when I’m struggling.  I definitely can’t ‘fight back’ as hard as I’d like to.  The third issue is that I like ‘sharp’ pain.  That is, I enjoy some whips and being spanked.  It’s definitely more a mood thing than the others.  The main thing that makes this one difficult is the level of control my partner has to have.  It is difficult to trigger the sharp snap of pain on the skin without bruising the flesh beneath, especially with someone who bruises as easily as I do.  And I HATE being bruised.  In the BDSM world, when you talk about implements, you talk about ‘sting’ and ‘thud’.  ‘Sting’ is exactly what I like – that sharp sensation on the skin.  ‘Thud’ tends to refer to harder impacts against the flesh, often leading to some bruising.  Personally, I prefer something with almost no thud, all sting, but used gently enough not to break the skin.  If things are done to my liking, within an hour or two there should be no marks.  Less if it’s done in the shower, typically.  The boyfriend, being a gentle soul, was rather appalled by the idea of striking me when it was first brought up, but he agreed to try it and found that while he doesn’t enjoy the act of making contact like that, he does very much like the way I respond.  I think he feels much the same about blindfolding and tying me up – it’s not that he enjoys being in control like that, it’s that he enjoys how much pleasure I get from not being in control.  It’s a set-up that may sound rather odd, but it works for us.  I get my fill of my kinks, and he gets off on how much I enjoy said kinks.  (On a side note – I am very, very grateful that my kinks are relatively tame.  I think if I was into more pain, or more submission, or more exotic kinks, the boyfriend would be so turned off by the idea that he wouldn’t even want to try it.  What I like is close enough to vanilla that he was at least willing to give it a go!)

Um, I think I covered everything there.  Please do feel free to ask questions, though I’ll admit I may not answer them if they make me…uncomfortable.

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A moment of typical EDS…

We got home from our vacation yesterday.  It really was a nice trip, and my parents and the boyfriend’s parents met for the first time.  They liked each other.

So we get home, and we’re both kind of tired.  The boyfriend brings in all the stuff, including my new-to-me scooter.  My parents brought it out; it belonged to my grandmother, who passed away a little over a year ago.  It’s good to have a mobility device that will allow me to get around more, though this is a bigger, heavier scooter than I would have bought myself.  That’s kind of a mixed blessing – on the one hand, it’s more powerful and can do more (like managing hills and going over grass); on the other hand, I can’t lift the thing myself – we’re considering getting a carrier we can hook up to my car’s tow hitch so that I’ll be able to have it when the boyfriend isn’t around.  Money we don’t really have, but on the other hand, the scooter will be at its most useful when the boyfriend isn’t there to help me.

Anyhow, all of this is kind of besides the point, because I was going to give you a typical moment of having EDS.  It was around 9:30 last night, and the boyfriend and I were both downstairs.  I was relaxing with a novel, he was theoretically surfing the net with his phone but dozing off a fair amount of the time.  I got up to go to the bathroom, and as I started up the stairs…POP!

Yeah, that hurt.  My left knee…something was definitely wrong.  I’d gotten about 5 steps up, so I was kind of stuck.  I called the boyfriend over, and he helped me down the stairs, my arm over his shoulder and him one step below me.  We managed to partially dislocate my left shoulder as I stepped off the last stair, because of the difference between his height and mine.  I needed to get down to the ground to assess the damage to my knee, because the place it popped in wasn’t where it usually does, but I couldn’t bend my left knee without pain or support any weight.  The boyfriend had to catch me under the arms from behind and lay me down, which isn’t as easy as it sounds.

Once I was on the ground, I could definitely tell it wasn’t the usual, and that’s a bad thing.  ‘The usual’, with my knee, is my kneecap partially or completely dislocating, which is painful sure but easy to fix.  This, though…the pop was centered over my patellar ligament.  And oh yeah…I still needed to go to the bathroom.  I tried to sit down and just scoot backwards up the stairs, but our stairs are relatively steep, narrow stairs, which is really hard to get up that way, especially when you don’t have great upper body strength.  In the end, I had the boyfriend fetch my crutches, which at least let me manage my weight in a way that is easier on my upper body.

I’ll tell you, it was one of those times when I was willing to accept the humiliating possibility that I might need a commode on the 1st floor.  I haven’t needed to use a non-toilet ‘potty’ since I was a little kid being dragged along on road trips by my parents when I was old enough not to be in diapers and but young enough not to be able to give much warning before I needed to pee.  (Their solution to that, as I recall, was to use a collapsible kiddie commode type thing)  Well, I haven’t with the exception of the one time with the really, really bad flu that landed me in the ER and almost had me kept inpatient for a few days.  The idea of needing one in my house?  Not a pleasant one.  I doubt the boyfriend would like the idea much either, as he’d be one of the people who had to empty it, as I only have an attendant for 2 hours a day.

I got in with my doctor’s office today (though not my usual doctor) and there’s concern that I may have partially torn either my patellar ligament or my lateral collateral ligament (that’s the one on the outside of the knee, and a typical tackled-from-the-side football injury).  I get an MRI done Friday (yay, let’s put the mildly claustrophobic girl in a tube again!) and we’re really hoping that either I haven’t torn anything and just inflammed stuff or it’s a small enough tear not to need a repair.  Surgery is a definite possibility on my horizon.

I can’t go to work because I can’t get to my office in my scooter (you can only get to about 1/2 of the offices on my floor without going up 3 stairs and down 3 stairs).  It’s just as well, since I should be icing down my knee, and shouldn’t be walking back and forth between the room I work in and the room my supervisor is in, and it’d be mighty inconvenient to keep getting on the scooter, going 20 ft, turning around, driving back 20 ft, and then hopping off the scooter and back to my desk.  Because I’m technically a volunteer intern, I don’t think the ADA requires them to figure out a way to make it work for me.

Yup.  That’s a typical EDS moment.  Most of the time, we look just fine and maybe even are fine, but every now and again, BOOM, it gets you.

It’s also leading to some not-so-good service dog partnership moments.  Hudson isn’t used to me walking with crutches, and moving at a much slower pace than usual, so he’s not pacing me well, which means he gets ahead of me and crosses in front of me and tangles both of us up in his leash.  The really bad part of this is that we’re supposed to be getting re-certified as a team this week, and what they measure is how well you work as a team – and right now, we aren’t!

This, I think, is the real pain in the butt about EDS – the unpredictability of injuries, the severity of random injuries, and the way it interferes in your life.  It happens, you can’t avoid it, you can’t plan for it, and man does it interrupt things you DO have planned!

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Life, plus one (service dog)

I realized the other day that while I’ve written a lot about Hudson being funny or difficult, I haven’t written a lot about…well, what everyday life with a service dog is like. Which feels kind of silly to me, since I write so much about what everyday life with a disability is like!

If any of you are coming new to my journal from this post, Hudson is my service dog, a 3 year old labradoodle who I have been with for almost a year. I actually break one of the rules our trainers set out for us – when Hudson and I are in the house, Hudson is almost never on a leash, because he’s so well behaved. With very rare exceptions (like really needing a drink or to go outside), Hudson never leaves the room I’m in, and never runs to anyone or anything, so I don’t worry about him not being leashed. Unlike most service dogs, Hudson has very little interest in the outside world, so he’s not about to run to the doorbell or run outside given the opportunity.

So here’s what a normal day looks like, living with Hudson.

I tend to kind of grumblingly wake up before I’m actually ready to get up because my bladder is demanding a trip to the bathroom. The doctors can’t decide whether it’s interstitial cystitis or functional bladder disorder, but I’ll tell you one thing for certain: it’s annoying! So I drag my grumpy butt out of bed. Hudson’s a bit of a lazy bum in the mornings too, so I have to call him several times and sometimes even poke him with my foot before he’ll hop up to accompany me to the bathroom. We drag over to the bathroom, and then drag back to the bedroom, and I go back to sleep for a while longer.

When it’s time for me to actually get up, usually Hudson’s already awake. As soon as it looks like I’m getting out of bed, he pops up excitedly and starts frisking around the narrow space between my side of the bed and my dresser. He comes up to me to get petted, but he’s too excited to stay, so he scampers back and forth, back and forth. Once in a while he gets TOO excited and whacks me with his open mouth, which ends this particular playtime.

When I get dressed, most of the time Hudson insists on smelling at least one article of my clothing. Otherwise, he mostly stays out of the way when I get dressed.

I live in a hundred plus year old house, so the halls and stairways are narrow, I send Hudson down the stairs in front of me, so we won’t foul each other up. This was something I had to learn – the stairs are theoretically just wide enough for the two of us, but he wants to go down the middle. He doesn’t want to be on the side towards the room because he’s afraid of heights, and he doesn’t like going down the wall side because he doesn’t like the feeling of being too close between me and a wall.

This summer, we put up a curtain hanging across the bottom of the stairway, to keep the livingroom air conditionering in the living room, and Hudson is still very uncertain about it. He walks veeeeerrrrrrrry slowly up to it, and waits for me to move it out of the way. The one in the kitchen doorway is, for whatever reason, less scary. That one, he just wants a big enough space open to squeeze through, and will walk right up to it before that space is opened.

Anyhow, so we get downstairs. I throw him out to do his business. Our backyard is concrete, so we have a little wood framed box of mulch for him to pee and poop on. We tried with dirt at first, but that got really icky, wheras this rubber mulch can be cleaned with a hose or by the rain, so it stays relatively clean. When he comes back in, I feed him and then get my own cereal out, then pack my lunch.

Right. So I’m dressed, we’re fed, what next? Let’s assume this is a work day.

I walk over to our front door. His gear is right next to it. No matter what kind of treats I offer him, Hudson doesn’t want to come over, because he knows that he’s going to get dressed and start ‘work’. I eventually coax him over, and once he’s there he’s pretty cooperative in getting dressed. He’ll duck when I try to put his harness over his head, but that’s the only attempt to make it more difficult for me.

Now that we’re all ready, we either get in the car (if my boyfriend is available) or go catch the trolley. Hudson likes the car, so those days are a lot less eventful. If we have to take the trolley, we walk about three times as far, which tires me out a bit. We get on the trolley and they let me pay the disabled rate, something they never allowed when I was disabled and walking with crutches. I have to ask the person in the front-left seat to move because that’s the only spot with enough room for the dog because the seats don’t have space under them for him to duck into. We ride the trolley for I guess 8 or 10 blocks, and then we get off to catch the subway.

I’ll note, at this point, that it’s inevitable that someone will comment on my dog – usually at least one person per vehicle. More often than not, they ask what he does for me, which is rather rude as effectively it asks, “Hey disabled person, what can’t you do for yourself?” There is almost always a comment on how handsome a beast my boy is, and queries about what his breed is are not uncommon. I try to be nice and friendly when responding to all these questions, because a service dog user is, in the eyes of the world, kind of an ambassador for service dog users. I’ll admit most of the time I wish they’d leave me alone just like they would do anyone else on the trolley or subway, because travelling is uncomfortable to me, and the dog is usually scared so requires a lot of my attention. They believe they have a right to my attention, and if it were only for my own sake, I’d be more willing to make it clear to them that they do not, but I represent service dog users so I have to be nice.

This branch of the subway is actually elevated on our end, so we take the elevator up, pay at the window and then walk back to the accessible gate (because harnesses are not compatible with turnstiles). I have to ask someone to open the gate for me, because it’s beastly heavy. Hudson is nervous to be up on the platform, from which you can easily see through the tracks or through the fences to the ground. He spends most of our time up here shaking, while I pet and verbally reassure and feed him treats.

Then the subway comes, and he’s scared so everything he’s doing is very abrupt and jerky (OW!). We get on, and more often than not I have to ask someone in the handicapped reserved seating to move – they almost never give up their seats without me asking, and sometimes they’re very rude about it. I get sat down, and get Hudson down as much out of the aisle as possible. He does his best to stay in the aisle as much as he can, which is of course hazardous to both him and other passengers. We continue on a bit of a tug-of-war the whole way to work, which is hard on my body and frustrating.

When I get up, he wants to bolt off the train, so he does his best to drag me along and I use his pinch collar to remind him that he’s not supposed to do that. Once again, we have to use the handicapped gate to get out, but this station isn’t accessible so I have to trudge my way up the steps to get to the surface. Ugh, I hate steps. Especially when Hudson’s wound up so he’s less help.

Hudson’s still darting and pulling, because he hasn’t calmed down yet. Because my background check hasn’t come through yet, I still have to go through the visitor’s entrance at the courthouse. The security people keep making me take an elevator all by myself, nevermind that the worst Hudson might do to anyone is sniff them. Up the elevator to my floor. The way the building is designed, I have to walk around 3 1/2 sides of it to get to my office, because the 4th side doesn’t have a through passage. Oh I hate this walk. The building is a block to each side, so it’s a long haul for me. And it’s not an accessible building – there are stairs, a few up, a few down. By the time I get to my building, I’m feeling woozy from the heat and sore as all hell from the trip in.

I put out Hudson’s rug and get us both some water, then we settle down to work, him to doze on his rug, me to read motions and petitions and research them. He pops up when I get up to move around the office for things. I eat my lunch in the office.

Around 2, we head outside for his bathroom break. My office has been very nice about it, and the security guard in the corner nearest my office will let me back in so I don’t have to do the big treck around the whole building to get back. It rains here often, and so sometimes his bathroom break gets postponed while I wait for it to stop. We walk across the street, and then across again, so we’re catty-corner from where we started, at the small park. I have him do his business in a planter so that no one is going to end up stepping in or sitting in or so on his pee or any of his poop that I can’t clean up. He usually poops at this time of day, so I take one of my bags out of his harness packs, grumble to myself as I climb into the planter, and clean up after him.

We go back to work for another three hours, and then we get to travel home.

Because we’re travelling home at 5:00 every evening, the subway is PACKED, and the crowd presses in around Hudson, which he finds uncomfortable (and I can’t blame him). It’s harder to get people to give up their seats this time of day, and I often have to point at the sign that indicates these are reserved seats to make them move. The struggle to keep Hudson out of the aisle is harder now, because the crowd puts him a little more on edge, and more important, because the aisles are so crowded with people standing.

We finally get to my station, and I breathe a sigh of relief as we get off the blasted subway. Hudson is jerking and pulling like a fiend. We get on the elevator up to the crossing to the other side, where there is an elevator to the ground. Walking across that pedestrian overpass scares the hell out of Hudson – too much ‘down’, too easy to see through the chainlink fences, on both sides, so that even if we walk down the middle he can see down.

Elevator down, finally, and then we cross the street to the trolley platform. It’s just a little island in the middle of the road with a railing on one side – no seats, no shelter. On hot days, if our timing is bad, I’ve come very close to fainting here. I lean against the railing and wait. Hudson is still anxious, and having cars and trucks and motorcycles going by on both sides of us doesn’t help matters any. I’d really like to just zone out and wait for the trolley, because I’m feeling lousy by now, but I have to stay paying attention to him and soothing him. And of course, because we’re standing there, people often want to comment on how cute my dog is and ask what he does for me, yet again.

Finally the trolley is here. This stop gets a lot of people boarding ’cause it’s the intersection between the trolley and the subway. They rush on, but they tend to be polite about giving Hudson and I enough space to board. I try to get on early so the person I depose from the front-left seat will still be able to get another seat, and no one has ever given me the slightest bit of a hard time. People who I chit-chat with on the platform occasionally stand near me to help shelter Hudson, who inevitably has part of his body out in the aisle. I do appreciate that quite a bit – he’s been kicked twice on the trolley, and I worry that he’s going to start associating the trolley with being walked into. I have to keep watch for people exiting and entering, to make sure they don’t step on him, and try to stop them with voice and outstretched hand when it looks like they will. You’d probably be surprised by how often people don’t even register the voice and hand unless I push back pretty hard, which tends to hurt me.

We finally get to our stop. Hudson’s worked up, I’m worn out and ready to collapse, but there’s still 3 2/3 blocks to walk home. I swear, it feels like these are the longest blocks in existence, as the dog jerks and pulls and I’m tired and god it’s hot…

We get home. I want to collapse, but I take off Hudson’s gear and get him a drink and let him out to pee first. Sometimes I even remember to get a drink into myself. Then I stumble up the stairs to go lay down in the bedroom, because it has the best ratio of air conditioning power to space. I usually manage to get out of my work clothes before I collapse. I stay down until my boyfriend makes dinner, usually.

The rest of the day is pretty uneventful. Sometimes we watch a movie and I spin yarn, my newest and favorite passtime. Sometimes I feel too flattened for that, or it’s too hot and our underpowered airconditioner in the living room won’t cut it, so I stay curled up in bed and read. Usually, the boyfriend either goes on his computer or plays video games then, because I’m feeling crappy enough that I need to tune out the world and fall into a book.

On work days, I usually don’t recover enough for a rousing game of chase-the-dog-around-the-livingroom, which is the only athletic play I’ve managed to get Hudson interested in at home. Work days are, for me, travel – work – travel – rest – eat – watch tv or read – sleep. It seems positively dull spelled out like that, but, well, I suppose work days are a bit dull because I don’t have the energy for them to be anything but. Work takes everything I’ve got, and at my current job, I don’t have the set-up that would enable me to work 2 days in a row.

That is, I suppose, part of the story of life with my disability more than it is life with my service dog. You have to pick and choose what you’re able to do and in what order and how. Having my service dog makes my disability matter less in some ways, but the disability will never go away and no adaptive aid or assistant is going to change that.

So there you go. An average (work) day in the life of a woman with a disability and a service dog.

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Living with Ehlers-Danlos Syndrome

So I’m sure many of you have wondered, what’s it like to live with EDS?

It’s a little difficult to describe, because I can never make up my mind whether I should include my secondary conditions. You see, the correllation between some of them and EDS seems to suggest there is some connection – so do I talke about EDS before I developed the secondary conditions, or after?

If I talk about it before, the main thing is that you’re constantly getting injured and the injuries don’t heal all that well. People think you’re terribly clumsy because you get hurt doing perfectly normal things like, oh, walking. At this stage, a lot of us don’t get diagnosed – I sure didn’t! You have to start getting careful about what you do, and listening to your body. In terms of preventing injuries, the best thing I ever did for myself was to take a yoga class. It strengthened my muscles (which helps prevent the kind of injuries we’re prone to) and improved my awareness of where my body was. By the time I had taken ballroom dance classes, if I was paying attention, I had a kind of precision that is quite rare. The only problem is that when I’m not paying attention, I don’t have it! So I still got injured walking around obstacles, bumped into tables and doorways, and the like. You get used to your body aching, because when your muscles have to hold your joints together, they get fatigued. And then there’s all the injuries. They linger, and ache, and create muscle aches because of the way the muscles get jerked around when your joints move out of place. But other than the low-level pain you have all the time, and the frequent injuries, you don’t seem that odd. I always had bruises, scrapes, and cuts from something, but everyone including me assumed it was just because I was a clutz. Yeah, I could do parlor tricks like touch my thumb to my forearm, or touch my foot to my opposite shoulder with ease. But that’s all, really, when you’re dealing with a comparatively mild case of EDS like mine.

When I got older, I started getting secondary conditions. At about 19, I had irritable bowel syndrome (IBS) show up, and suddenly I’d get diarrhea or constipation, or more often gas and cramps, for no apparent reason. I’ve dislocated about 3/4 of the joints in my body over the years. When I was 23, I developed fibromyalgia, leaving me with chronic pain everywhere. Fibro acts as a kind of amplifier of the nervous system. When something hurts, it REALLY hurts, at about three times the rate it did before. I have a hiatal hernia, which is to say that part of my stomach sits above my diaphram, which makes it easy for me to cough or laugh myself into vomiting. It also has given me acid reflux, so that I have to take pills to stop my stomach from producing so much acid and watch what I eat. My annoying bladder leaks all the time. My migraines are at least partially involved with my EDS, because the tension and instability in my neck and shoulders triggers most of them. I faint in the heat, or any time my hydration, salts, or blood sugars dip. I’m supposed to wear a whole pile of braces, but I have trouble with them – either they’re so hard to put on that I dislocate fingers doing it, or they cut into my easily torn skin, or they overheat me and make me more prone to fainting!

Now, I know that sounds like a pile of things gone wrong. And it is. But the thing is, I’m still happy. I can still go to law school, and I pursue my hobbies like spinning yarn, knitting and crochetting, painting, making jewelery, and sewing. Because of my disabilities, I have a wonderful service-dog partner. Because of my disabilities, I met some of my closest friends. I also have an awesome boyfriend, though meeting him wasn’t directly because of my disability (though I’ll tell you guys the story sometime, if you’re curious).

The big thing about living with EDS is that I could wish for a bit more undertanding from the world at large! I HATE being asked by strangers why I wear braces or have a service dog (though I explain the latter because having a service dog makes you kind of a de facto ambassador for service dog programs, not to mention the fundraising for your service dog program that you can do by educating). I’d really love if people wouldn’t assume that the girl with the dog must be blind. It would be great if people would ask me if I need help, or ask how they can help. I love when people open doors for me, even though I know many folks with disabilities don’t like it. I wish there were seats in more places, so I could sit down and take a rest when I’m out shopping. And for crying out loud, if you don’t know me, don’t tell me that you’ll pray I get healed! I was made this way, and I’ll stay this way thankyouverymuch. If you believe in a creator, then you ought to believe that their creations are intended to be the way they were made. I wish that doors everywhere had electronic openers, so that all I have to do is have the dog push a button and I no longer have to rely on the kindness of strangers to get in or risk hurting my joints. It would really be nice if the world was more willing to accomodate me without blatent signs of my need – no operators on our local public transportation would give me the disabled rate before I got my service dog, but nobody denies me that right now. And oh…oh do I hate being stared at. I’m not a show, I’m not a circus freak, I’m just somebody going about her day just like you. I’m tired of buildings that send me in a back or side entrance instead of having an accessible entrance right up front so I can walk in with everyone else. That, more than anything, is what I want – to be treated like everyone else. To have the same opportunities and the same access, to be viewed as just as valuable and just as welcome.

Phew, that got long.

In conclusion…if you want to know about EDS, about living with it, about being disabled…listen. Don’t disregard my voice. Don’t call me ‘too sensitive’. Don’t claim that no one could possible treat me the way I’ve been treated. Don’t deny my personhood, my existance, my life.

If you want to ask questions about anything I wrote here,or living with EDS, or being disabled, or specifics about how my body deals with things, or…well, anything at all, I’m officially opening the floor here. This is a get out of jail free, all questions accepted invitation.

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The late night breaks are the hardest

One of the frustrating things about living with a lot of chronic health conditions is that you can’t escape watching them progress.

For me, one of the things progression means is more braces. A year ago now, I finally got insurance approval for a $1500 set of braces for my fingers.

I never picked them up.

They’re waiting for me now, in the same office as my physical therapist, who I need to go see in the near future. I desperately do not want them.

I don’t want my hands covered in silver braces that people will stare at and ask about. Bad enough that they feel no shame about asking me why I need a mobility aid – whether it’s my service dog or, in the past, crutches and canes. But to have them querying me about a set of braces that will ruin the slim, clean lines of my hands is particularly hard.

You see, I like my hands. I like them as they are – delicate, petite, long-fingered, slender hands. When I used to work Renaissance Faires, the men would all compliment me on having the hands of a lady.

But no more. My fingers will be bound in rings upon rings of silver. Piles of the damn things. Two to a finger, on bad days. On good days, I could probably get by wearing just 3 or 4 of them instead of all 8.

I’ll admit as braces go, Silver Ring Splints (http://www.silverringsplint.com/) are attractive and inobtrusive. But the fact exists that I will still have a pile of somewhat odd looking silver pieces wrapped around the joints of my fingers, and people will ask. It’s what they do, when it comes to disability – they ask without thought of whether they are prying or asking unwelcome questions. Whether they are prodding sore spots. What they really ask when they say, ‘Why do you have [disability-related aid]?’ what they are really saying is ‘What’s wrong with you?’

A bit rude, really, to pry into someone else’s health records like that. You wouldn’t go around asking random older males if they’re impotent, or asking every woman you passed if they might be pregnant. It’s no more polite to question people about assistive devices, because in all of those situations, you are asking for someone’s medical information, something we’ve deemed important enough to protect that we have laws in place like HIPPA that regulate when other people can talk about your health.

To get back to the topic, out of the blue, at 2 in the morning last night, this hit me. It’s been building for a few weeks, as they’ve tried to remind me to pick up the braces and I’ve selectively forgotten. I know it’s selective forgetting. That doesn’t help me with actually remembering it – I don’t want to.

But at 2:00 this morning, I had just finished my book, and I was far too awake. I turned off the light and tried to make myself start drifting, which will edge towards sleep a good amount of the time, but for some reason the splints rose up in my mind to torment me.

I started sobbing. I am lucky in that my boyfriend’s reaction to being bumped into and squeezed hard by a crying girlfriend some 3 hours after he went to sleep is to comfort, not to get annoyed at being woken. I cried, and I talked to him, and I cried some more. I tried to put into words why I found them so upsetting, and when it comes down to it, it’s a combination of vanity, fear/hatred of my disability advancing, and intense dislike of people staring and prying. There’s also some worry – I know that every new brace means getting your body accustomed to them, which is a very uncomfortable and sometimes painful process. I have a scar on the back of my calf from not being quite careful enough with a new ankle brace. The idea of having my hands be all painful again, when we finally got a combination of meds this time last year that gave me back my fingers, is pretty damn abhorrent.

The idea of people staring at my fingers and adults and children alike deciding to ask about the odd things I am wearing is very upsetting. It’s hard enough that about one in four people I have any contact with feel the need to comment about my service dog – that gets under my skin some days. Or, heaven help me, the sheer number of people who ask if I’m training Hudson, or why I seem to be able to see but have a service dog. On a good day, I can smile at them and explain and give them a card from my service dog organization that explains all the conditions the dogs can help with and includes a sample list of the tasks they do. On a bad day, I give them a much more frozen smile and tell them that I don’t walk well, and turn away so they’ll leave me alone.

I hate being this…visible. I hate the level of focus on my disability and the aids I need because of it. I hate the questions I get from people when they can see my knee or ankle braces. I don’t WANT everyone asking if I’m okay just because they see a new piece of equipment.

I’m sure a great deal of this sounds rather silly. Isn’t it supposed to be nice when people convey that they care about you by worrying about you?

Well, when it’s something that happens to you frequently, it’s not nice. It makes you feel like a freak. Some display of your disability/illness, hung up for the world to see, stared at and wondered over.

The hardest part is that there are few good ways to deflect the questioning. If I tell someone that their questioning is rude, oddly enough I am the one who comes off as being rude. If I’m abrupt in my answer or refuse to answer, much the same. I’ve taken to coming up with relatively short answers that don’t really answer anything. When asked about my knee and ankle braces, I just shrug and say, “It’s just new braces for the same old problems.” That tends to ease people’s worry without spilling my medical information to all and sundry.

But oh, if I could just get them to not stare, to not ask…if I could get them to look at me as no different than anyone else…how very much I would like it.

It would certainly knock out a big part of what keeps me from being happy about new braces that are supposed to improve my quality of life. Maybe then, my knee and ankle braces would come out of the closet and actually be worn.

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A ‘duh’ moment

So, between a friend and my boyfriend, I’ve had a pretty good ‘duh’ moment.

I mentioned before that because of the way my insurance is handling things, I’ve had to go on a pain medication patch twice as strong as what I was on before. Now, these patches look a little bit like the clear plastic nicotine patches for someone trying to quit smoking.

So my friend today asked, why don’t I cut a quarter of it off, so that I’m only going up in dose by half as much?

Wow, thought I. This is an incredibly simple fix.

When I mentioned this to my boyfriend, he asked why I couldn’t just cut the patch in half and apply half of one every 2 days – effectively doing the same as what my doctors and I had originally wanted to do.

Oh. Well. DUH. Why on earth not?! We’ll have to test it out and see how it works, but as long as the glue doesn’t develop a problem if it’s opened but not applied until 2 days later, this is a perfect solution. I get the level of the drug I actually need, so that the pain is minimized but I’m not dopey, and I get to change the patch often enough that it doesn’t wear off before my next patch change.

So, the insurance may not be helpful, but a little bit of ingenuity and I’ll be getting what we wanted all along. Yay for ingenuity!

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