Archive for June, 2009

Entropy and Irony

So, here I am – Kali. My namesake is the goddess of entropy, and after a night in the ER it has finally struck me how ironic that is.

After all, so many of my health problems could easily be explained as an excess of entropy in my system! Joints breaking down too fast, too much chaos in my digestive tract, etc.

I ended up in the ER the other night because of what turned out to be gastroenteritis – also known as stomach flu. Yes, that’s right, stomach flu made me so sick I had to go to the ER.

It was downright embarassing. I was so sick that the receptionist later told me that she had been concerned for me, and fairly sure I was going to be admitted. The GI doctor on call, who I spoke to before going to the ER, was worried about a blockage in my intestines, or a twist. I had some concern that it could be my appendix as well, though I wasn’t running the fever that typically comes with that. I hadn’t kept anything down for hours, not even water, and anything I ate got rejected before it was digested. My medications got the same treatment, so in addition to the GI problem my pain levels were skyrocketing from being untreated. I was so weak I couldn’t use my crutches, and stumbled as I walked. At one point, an EMT had to escourt me the 20 feet from the bathroom back to my ‘room’ in the ER, as I nearly keeled over.

But a liter of IV fluids, and some IV pain meds and anti-nausea drugs, and I was doing somewhat better…right up until I reacted to the anti-nausea drug.

I had a dystonic reaction. The muscles on the left side of my jaw contracted violently, and because of my connective tissue disorder, it dislocated the right side of my jaw and twisted my mouth so that my teeth ground at my cheek and my gums. It caused an immense amount of pain. I’ll admit, I started screaming – the combination of unexpected pain and my body doing things like that on its own was quite scary enough for me, thank you very much.

At least this ER was highly responsive – within seconds, the doctor was in and assessing the situation, and within a few minutes, the supervising attending doctor was there. They had a brief discussion – give her a muscle relaxant? No, give her benedryl, it’ll stop the reaction (interestingly, not because it was an allergic reaction of any type, but because of a secondary property of benedryl that works against this kind of problem)

They gave me IV benedryl, and I managed to manipulate my poor contorted mouth enough to ask when it would kick in. The doctor told me 15 minutes, maybe 20, but within 10 the muscles started easing and my jaw clicked back into place, with nothing but the pain and cuts in my mouth to show what had happened. (for what it’s worth, a day and a half later, my jaw STILL hurts, and that’s with a fair amount of massage to it)

Not terribly long after this, the attending came back in to poke at me a bit and see if I was doing better, which I was. As I have already had 2 abdominal CTs in the last year, he decided that I ought not to have another one unless it was absolutely necessary, and he thought it wasn’t…because he thought I had stomach flu.

How…embarassing. To be that incredibly sick – and really, it was at the point of being dangerously dehydrated – from just the stomach flu!

I know that it’s because of the combination of IBS, not really being recovered from whatever made me throw up last week, and the stomach flu, but it’s still embarassing. I mean, I remember the utter misery of being sick with it as a child – once, over Christmas – but this was something else.

Too much entropy, that’s what it is. Perhaps I need a new name!


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I’ve been stewing and thinking about this piece for quite some time. It’s a complicated and very personal issue, so obviously, I do not speak for all PWDs. I am trying to give you an idea of how disability affects faith, because it most emphatically does! It affects not only your own faith, but the faith of people around you.

As an aside, I do not think I will mention what my own faith is, because it’s relatively unimportant in this discussion. If you’re really curious about it, please go ahead and ask. I use ‘higher power’ in this discussion to mean any higher power – god(s), god, goddess(es), spirits, angels, saints, some amorphous higher power, etc. It’s a shorthand, and used because I do not wish to prejudice this discussion in favor of one faith or another. For what it’s worth, I think all of these reactions are completely valid, and do not think one is ‘better’ than the others.

I’ve noticed that it seems like a higher proportion of PWDs are Buddhist than the general populace. I suspect this comes from the emphasis on inner life. Buddhism also teaches that life is suffering, which can be reduced by having this very rich inner life of contemplation and less focus on the world and all its trappings. It stands to reason to me – if you can release some of the desires to do activities or obtain things that you no longer can because of your disability, you will likely have greater peace and happiness!

Now, when we become disabled, there is a huge array of ways we deal with it regarding our faith.

Some of us leave, and never return, because our faith is shattered by this bad thing happening to us when we believe we are good people. In this group, there is often a sense of ‘why me?’ Some leave because a higher power that would do that is no higher power they wish to worship; some because they do not believe that this would have happened to them if a higher power existed. I see this one across every religion. Disability can have very ill affects on any relationship, and when your relationship with a higher power is one of trusting that higher power to keep you sheltered because of your faith in them, it can feel like a betrayal when that higher power does not appear to affect you. I feel like most people in this group, who walk away from their faith, do so because of anger or grief.

A variant on this theme is someone who leaves their faith for another. In light of a disability or other difficulty in life, people sometimes come to the conclusion that their prior beliefs cannot be right because the change in their life does not seem to fit within that belief system. I would not say that this is losing or abandoning faith, but merely changing perspective. Sometimes, people go through many faiths before settling on a new one. Some people spend a while not holding to any faith and then go to a new faith instead of their old one.

Some of us, myself included, don’t actually walk away from the faith per se…but are so emotionally affected by our disability that we have to take a break. In general, this is an approach that regards a disability as something that happened for no particular reason. For myself, the emotion that made me stop practicing was anger – I was too angry with everyone and everything to feel comfortable making any kind of contact with my higher power. I did not want to reach out to my higher power with a fist I could not unclench. After nearly two years of being disabled, I am finally approaching a point where I think I might be able to return to my former levels of practicing my faith. I have lived by its tenents this entire time, to be certain, but I have not been a person who practices.

Some of us find meaning in our disability. They see it as something that has happened for a reason – a lesson to themselves or others, a rebuke, a challenge to make them grow. I cannot recall seeing this attitude towards disability from anyone but Christians, though I have seen it in many different denominations of Christians. This type of view tends to make a person practice more frequently and more fervantly than they did before, and often leads to the person talking about this approach a great deal. I cannot tell you how many conversations with people who view their disability this way have included a reference to their disability being for a reason. As I am religiously a pretty private person, this tends to make me a little uncomfortable – this ‘witnessing’ all the time. I think sometimes that people are pushed to react this way, and I wonder sometimes how many of the people I hear fervantly proclaiming that it happened for a reason are really asking ‘why me?’ but cannot say it because they have recieved poor reactions from others when they speak that way. People who speak to a PWD and assure them that things happen for a reason can silence any kind of questioning, because if things happen for a (good) reason, then asking ‘why me?’ is questioning a judgement of the higher power and thus not to be done. Please, please consider this when speaking to someone with a disability. The pat reassurance that all things happen for a reason may comfort some, but for others it shuts down their own attempts to make sense of what has happened to them and silence the person who is actually experiencing the change in their life.

There are people who find that their view and approach to religion does not change. These tend to be people who have a great deal of acceptance towards their disability. There is less ‘why me’ and more ‘things happen’. I do not mean to imply that this is any better an approach than any other! They are simply different. Their outlook on the relationship between higher power and world has not changed significantly. It sometimes seems to me that this may be the path of least internal turmoil towards the higher power.

Relationships change for people when they become disabled. Some change smoothly and effortlessly – my relationship with my boyfriend has made this transition to where he must assist me more without any friction. Some become terrible anger and pain, to the point where they are abandoned, temporarily or permanently. Some suffer fits and starts – my relationship with my mother has been like this, where she accepts the physical side of my disability gracefully but has trouble with the change of perspective that comes with it.

I think that the relationship with a higher power is different only in that the other entity in that relationship doesn’t speak to us as clearly as a person can. It is only how we relate to the higher power that changes, not how it relates to us. In that way, it is both easier and more difficult to navigate. Easier because there are no hurtful comments, resentments, or slights on the part of the higher power; harder because we cannot just sit down with the higher power and hash everything out with the clarity one can with another person.

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I do apologize for my recent absence, folks. It was unplanned and unexpected.

You see, I’ve been thinking and working on drafting a relatively complex, deep post that requires a bit more work than my usual – something on disability and faith. I’ve been talking to other PWDs I know to see if their experience fits into how I am breaking things down, and starting to write what will be a very in-depth piece, I hope.

And then this weekend, I found out about a two day feminist disability response training. I thought OH! That’s right up my alley! So Tuesday I went to the first day of the training…and we had our first day of severe thunder storms.

Storms are hell on me, especially thunder storms. I suspect it has to do with the wild barometric pressure shifts, especially here where storms blow through, rather than sitting her and staying at low pressure for a while. So the pressure goes up and down and up and down and…ouch.

Now, I knew that I was going to pay for sitting up for 7 hours on less-than-comfortable chairs for the training. I didn’t expect the cost to be as high as it was, though. I missed the second day of training, because my pain levels were hovering around a 9 for large portions of Wednesday. I was not able to get out of bed for more than about 5 minutes, because the pain in my back was so incredibly severe. Worse for me, Wednesdays are the day the boyfriend goes out to school about 90 miles away. He leaves in the morning, often before I wake up, and usually gets home for a late dinner at best. This meant that when I needed to eat, I had to get downstairs to get food – not that I did much eating, as I threw up almost everything I ate. I tried to keep a small amount of something (usually apple sauce) in my stomach, because throwing up with an empty stomach is much more painful for me. I was also sweating like mad – pain makes me sweat, and in addition to that, that much pain makes it impossible for me to accurately tell what temperature my surroundings are, so I either get very cold or overheat.

And so I read – reading is, for me, the best way to ‘escape’ pain. A way to be not-here, not-now, not where I am suffering. It is in no way shape or form a complete escape, but it allows me to distract myself somewhat from the agony of my body.

I stopped throwing up early Thursday morning, thank heavens – I was starting to worry quite a bit about dehydration, between the profuse sweating and the throwing up. During the night, I slept fitfully – half an hour to an hour at a time, profoundly uncomfortable because the sheets were so wet with sweat that they stuck to me. I woke the boyfriend up often, bumping into him as I turned over, or in need of another small serving of apple sauce so I would have something in my stomach the next time I threw up. If I had more presence of mind, I probably would’ve asked him to sleep on the couch, except then I would be in a bind if I needed his help as he would be downstairs. He sleeps very heavily, so it is often impossible to wake him without touching him. At 6, I finally grew so miserable with the sheets sticking to me that I woke him up in tears and begged him to please, please change the sheets. Wonderful man that he is, he did not grumble in the slightest after being woken so often to help me.

Thursday was much of the same, though at a slightly lower pain level. As the boyfriend was here, he was able to do some gentle massage work to attempt to lower my pain levels, which helped significantly at times. I forced myself to start moving, as remaining in bed for long will actually worsen back problems, and one of the most important things they taught me in physical therapy was that you needed to rest, but you also needed gentle movement and stretching! I used the Gazelle exercise machine (which I highly recommend) for just a few minutes at a time, to get everything in motion. Around 4:00, I was finally feeling well enough to have the shower I so desparately craved….though it set me back as far as pain and sent me back to bed for the rest of the day.

Because my pain levels were high, things made me cry easily. My poor boyfriend – I can only imagine how confusing it must have been, as I cried in frustrating at my broken body, cried because of how madly in love with him I am and how happy he makes me, cried as we talked about the test I still need to do to see if I have the more dangerous form of EDS, cried again because of how I love him… And besides that, I kept having to kick him out when the pain became too much and I needed to pick my book back up and be not-here.

I have forgotten to speak of medication. Almost any chronic pain patient will tell you that they are in some way under-medicated and in pain. Many of us have a decent baseline, meaning that so long as nothing goes wrong, we are in low enough amounts of pain to have some level of functionality. I fall into that category. So long as I have nothing acute happening, the slow-release morphine my doctors have me on is enough to keep my pain at a relatively managable level. However, my pain specialist refuses to give me anything for breakthroughs or any muscle relaxants.

So what happens? We hoard the medications we need but are not often given. What else are we to do? So I have a small amount of vicodin and a few muscle relaxants, from past injuries and old medication regimines. It scares me sometimes, how little there is left, and knowing that I cannot expect to get more. They are very carefully meted out, half a pill here or there when the pain is unbearable. Wednesday and Thursday, I took muscle relaxants and small amounts of vicodin to supplement my usual pain regimine. Even with that, I was spiking up to a 9/10 in pain, the kind of pain that makes you throw up, whimper uncontrollably, thrash feebly to try to find a position that hurts at least a little less. If I thought I could have gotten help, I would have gone to an emergency room…but most emergency rooms have little willingness to treat chronic pain patients, even when they have an acute new cause of pain. No, it would have just meant 2-3 hours sitting in uncomfortable chairs as I waited to be called back, and then another few hours laying on a gurney that is far too hard and increases my pain.

The storms finally lifted around 10:00 last night, and my pain level suddenly plummeted to near normal. I slept peacefully last night, unlike the two nights that preceded it. And today…today I am where I expected to be on wednesday – stiff and sore, to be sure, but not in so much pain that I cannot get out of bed or need to supplement my normal medications.

I suppose this is another day in the life – not average days, though, but bad days.

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I’m sure at least some of you have wondered, what’s a day with EDS like?

Well, for starters, it isn’t just EDS.

So here’s the laundry list of everything we know or suspect is wrong with me, suspected things italicized: EDS, Raynaud’s syndrome, migraines (both migraines with aura and cervicogenic migraines), nearsightedness, hiatal hernia, acid reflux, Irritable Bowel Syndrome (worse than the name implies), functional bladder disorder, chronic headaches, chronic pain (especially in the back), alpha wave intrusion (sleep problem), ideopathic insomnia (can’t sleep for unknown reasons), bipolar, panic attacks, autoimmune? hypothyroidism, asthma, sensitive skin, plantar fasciitis, fibromyalgia, night terrors, orthostatic intolerance (which causes fainting and near-fainting), chronic dehydration, temperature intolerance (both heat and cold), and of course all of the chronic injuries that go with EDS.

So right now, my day starts around 9:30, because that’s when I wake up. There’s a long story behind this – before I was diagnosed with alpha wave intrusions and started a medication for it, I slept in patches, waking up frequently. I’m not entirely certain if this waking easier and earlier is a permanent thing, but my doctors believe it may be, so I’m hopeful.

So at 9:30, I’m awake. I’m awake and I feel like I was in a car accident the day before – every part of me is stiff and painful, but especially my back, neck, and shoulders. It does not matter how I lay to sleep, I wake up this way. Sleeping in my bed minimizes it, but nothing makes it go away. Today, my forearms hurt from crochetting too much, in addition to the ‘usual’, and my left hip is far worse than usual. I’m also hungry, which eventually peels me out of bed. I go down the stairs, I eat, I drag my stiff, sore body back up the stairs, go to the bathroom and change the pad I have to wear because of incontinence problems, then to the bedroom, take my morning medications, and lay back down. There’s something wrong with my left hip, and has been since last night, but I think it’s just muscles overtightened – a chronic problem – and don’t think too much on it.

Around 10:30, I’m actually approaching ready to face the world…ish. So today, I went downstairs to work on a piece I’m crochetting – a stupid project for someone whose fingers dislocate – while waiting for my boyfriend to arrive home from his first errand of the day.

Around 11:00, we left for a trio of errands – picking up a recycling bin, going to Petsmart to get stuff for the upcoming service dog, and picking up an internet self-installation kit for our new place.

These errands, of course, led us a fair distance from home. Riding in a car is unfortunately one of the worst things for my back.

So we get the recycling bin, we walk around Petsmart a bit, and then we’re desperate for lunch and 20 minutes plus one errand away from home. I say hey, pizza! We aren’t in a part of town we’re familiar with, so we ask the boyfriend’s tomtom to find us food. One closed pizza place and one that doesn’t really look like a place we want to eat in later, and we had lunch at IHOP.

This was…not the best of ideas. You would think I’d know by now what I can and can’t eat, with all of my digestive problems, wouldn’t you? Well, the fact is, I can be very stupid about it, so here we are at 11:25 at night and I’m not sure if I’m still paying for lunch, if this nausea is related to back pain, or if it’s something else entirely. I think it’s a result of (stupid, stupid) eating something greasy and something involving chocolate (caffeine is bad for the digestive tract). I can get away with things, but it’s unpredictable – I’ve eaten this particular combination of things without problems more times than I could count, but obviously today wasn’t one of those times.

Now, the benches at IHOP? Well, they’re more comfortable for me than standard chairs, or hard benches, but they hit my back exactly wrong and still end up very uncomfortable. Between the driving, the walking with my hip not-quite-right, and the bench, I wasn’t feeling great, but I figured that picking up an installation pack should be quick, right?

Wrong. I wasn’t counting on Comcast’s…stellar… customer service. I don’t know how long I was in the car waiting for him, but I sang along with 3 songs before I got uncomfortable enough to give up on that, and I was there a while after.

Naturally, we were done just in time to end up in the start of my city’s ungodly early rush hour. How the hell can we have rush hour run as late as 10:00 AM and start up again at 3:00 PM?! And of course, on top of that, there’s an accident. Remember that bit where I wasn’t feeling all that hot BEFORE we got the installation kit?

So we get home. The boyfriend helps me remove my heavy knee braces. I go up…oh god…stairs…nnn…crawl. oh go bed now nnnnn. The braces leave my skin feeling like it’s been burned or abraded. It hasn’t been, but it’s that same focused, intense pain. I rub it, despite my hands hurting, because rubbing it helps. Unfortunately, it has to be exactly the right amount of pressure, or it adds to the pain, so my boyfriend cannot help with this.

I lay there for quite a while, just feeling exhausted. As it turns out, not exhausted enough to sleep. Great. So I can’t sleep, I can’t sit up, and I sure as hell can’t make it back down the stairs for a while. Welcome to my life – I spend a lot of time here. Probably the most unpleasant part of it, from my point of view. I wonder sometimes how you can be in this much pain from stupid things that aren’t life-threatening and don’t do any obvious damage to you. It’s here that I feel the most trapped by my life – I can’t even get on the computer, because I haven’t figured out a position where all of these things are true: the computer won’t overheat, I’m not looking down towards the laptop screen, I’m not reaching too far away from my body to type, the screen and my head are oriented the same way. So it’s me, and most of the time not even the boyfriend, because..well, there’s a lot of reasons, not the least of which is the fact that sometimes I am in too much pain to bear the movement that comes of having another person in the bed.

Today, I think it was mostly because he thought I was napping at that point, the secondary reason being that he was fighting to set up our internet and wireless. (I don’t want to give even a hint of an impression that he just abandons me there – he often keeps me company even when he can’t touch me, and checks on me when I’m just laying down but not sleeping. It’s far more likely that I kick him out of the bedroom than that he chooses to remove himself.)

So I eventually get up, and he’s tangling with things so I decide to start work on the painting that a friend of mine has commissioned.

But first, a pad of paper. Of course, I want the large pad, not the traditionally sized one, which has ended up…somewhere. I holler down the stairs at the boyfriend, who does not know where it is, but I have a suspicion…up to the third floor, where his office is, and yes, he put it on a shelf in there to keep it safe. Back down to the second floor, to my office/studio. Both, as I am a law student and an artist, and unwilling to head up to the third floor to do any variety of work I do often. And besides, when I am only part time at each of those at best, it seems insanely greedy to want more than one room for my work!

I sketch. Or rather, I upsize my sketch. The painting is to be a 24×36. The original sketch is a 9×12. Not only is this a huge gap in size, it’s not the same proportions – 2/3 vs 3/4. So I re-sketch the piece onto a 12×18 pad of paper – the right proportion, which lets me play with some of the details of it a little, while remaining true to the original vision that the patron has agreed to. In the end, I think I prefer the new version, and I think he may as well.

That done, to starting the painting! But first, I had to find the canvas. We moved over the labor day weekend, and needless to say the house is far from sorted. The boyfriend remembered, he’d been very careful to take my canvases up to the third story room that serves as his office, as fewer things were going into that room and he could keep them protected there. So up I went, and looked, and indeed most of my canvases were there. But not this one – a much larger canvas than my usual work. I went down one flight of stairs to look in my office again, and then hollered at him to see if he knew where it was. We both went back up to the third story, and he found it – in the fourth bedroom, the one that we are hoping to let out for the summer to get a little more income.

So back down to the second story to my office/studio.

I believe at that point I laid down again; up and down and up and down is bad, but when your hip is out, it becomes insane. I think it was at this point that the boyfriend came in to check on me, and I mentioned my hip being very painful. I realized then that d’oh, it might not be subluxed badly enough to make it impossible to walk on, but it could be slightly subluxed! A little wriggle (of the sort you learn when your hips sublux) and SNAP it was back in. The boyfriend looked visibly startled and commented on it; it was a loud enough snap that he had heard it clearly with his head a good 10′ or so from my hip.

I got up to start on the painting, then. I work in acrylic, which tends to mean that you must paint quickly, and can’t leave a layer until it is done, unless you want to paint corrections/alterations/shading on it once it has dried. As I was painting the undercoat needed for the background of this piece, I needed to finish it all at once, which set me to swearing when I realized that the canvas was not as well prepared as the brand I usually buy, and was requiring a lot more work than it ought to have. A painting that large, on a desk rather than a proper drafting table, means a lot of reaching and bending the back. In other words, this was a stupid, thoughtless thing for me to be doing today. However, when you live with this sort of thing, you kind of get used to ignoring the pain for now and paying for it later.

I finished the first coat of the ground and started rinsing out brush and palatte in the bathroom sink, utterly unwilling to go downstairs to use the kitchen sink. The boyfriend was coming up the stairs, I don’t remember why. I asked him to finish cleaning the palatte, which needed scraping, as I NEEDED to lay down. So he worked on cleaning while I rested – an unfortunately frequent turn of events, and something I am particularly sensitive and ashamed of: I play, and he cleans up the messes I make. It’s his choice as much as mine; he’d prefer I spend my energy on things I enjoy.

The rest of the day was up by turns, back down by turns. Up for only 30 minutes at a time, roughly. Rebellious stomach made dinner just…not happen. When your stomach problems mean that in a flare you cannot have acidic foods, greasy/fatty foods, spicy foods, or raw vegetables, it becomes hard to eat. When you add that my stomach problems are sliding out of control again, it means more than a few abbrogated or missed meals. The boyfriend ate without me tonight, and my dinner is still sitting in the fridge.

Very late in the day, the boyfriend remembered that part of the point of the errands today were the fact that I needed to print some sensitive documents, so we finally got that done, far too late for them to go in the mail. The poor man had to run up to his 3rd floor office and get the print-outs, as that is the only working printer in the house. (for the record, his office is up there so that our bedroom and my office can be a floor lower)

I poked around the web, answered emails, read people’s journals, and ohgod bathroom now. I have trouble getting people to understand how my gastro-intestinal and urinary problems play out. You see, I don’t get the kind of sensation most people get when their bladder or bowel is filling. I used to get that. But now, I don’t have ANY sensation most of the time until I am painfully in need of a bathroom, which usually means spasms in the bladder or bowel as well.

So I continue online, and the boyfriend is reading online, too. He went upstairs to take a shower, as I read blogs, and it occurred to me that I should do a post like this. He came back down, wanting to head up and cuddle, but was (as always) understanding when I said I had this idea…
I began to write this, and as I noted the time up near the start of this post, I realized that I was an hour and a half late taking my night medications, which explained why I’d had an increasingly bad headache for some time. You see, my night medications include my main painkiller, a 24 hour drug. It starts wearing off a bit about an hour before my medication time, so it’s easy for me to miss it without a timer set. With all the times I have to remember to do things, I wish I had something small and portable I could set many different alarms on – one for each of the times I need medications (a minimum of 4), reminders to move so I won’t stiffen up too much, so on.

As I wrote this, I had another ohgod bathroom moment, which meant (joy) a dash up the steep stairs of my 100+ year old house. I’m sure that’s exactly what my joints, especially my back, needed.

So here we are. It’s 12:20. My stomach has finally emptied itself enough that ‘hungry’ has won out over ‘roiling’. If I eat and then go to bed I wake up retching and coughing from the reflux (which is probably because of the hiatal hernia – a condition where a portion of the stomach is above the diaphram, which has very limited treatment options). If I don’t eat, I don’t sleep, because I’ve never learned to ignore the grumbling and twisting of my stomach. The medications have probably begun kicking in, but the left side of my head is throbbing (god I hope that isn’t a migraine), my back is…I don’t want to think about my back. It obviously wants me to think about it, as the right side just started spasming. I’ve taken a total of about 20 pills today, which is enough to make me capable of leaving the house for 3 hours. The boyfriend, a morning person, gave up on staying awake almost half an hour ago and went to bed. It feels likely that my insomnia is in full swing again tonight, bad enough that I doubt one of my few, precious sleep pills will help, so I don’t want to waste one.

So there. That’s a day in the life. I don’t know how well I described the period in the afternoon and evening where I was only up for about 30 minutes before needing to lay down for the same amount of time. I haven’t included the people staring at my forearm crutches, or the concerned way the boyfriend looks at me when I appear tired or pained. I hardly mentioned how often I felt nauseated, or how often parts of me twinged.

And now, I’m going to call it a night. I’m going to wander into the kitchen and find something small to eat, quite possibly some ice cream because the cream counters the acid somewhat and the fat digests slowly so I am less likely to be awakened by my hunger before when I ought to wake up.


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One of the unfortunate things that seems to happen fairly consistantly to people who become disabled is that they lose many of their friends.

I suppose I am lucky in that I moved as I was becoming disabled, so most of my old friendships that have attenuated have done so mostly because I moved across the country and am not great at keeping in touch.

However, it has meant that I got to see a slightly different facet of this phenomenon: the way people avoid making friends with a disability. This has not been helped in the slightest by the cliques and high school like social behavior you encounter at law school. And when I say high school like, I am sadly not exaggerating – a fellow law student who has taken a dislike to me ignores me when I try to join in to conversations, and just yesterday walked into the little boy’s clothing section in a store rather than pass close enough to me to have to make some kind of recognition and social pleasantry.

A large part of this has been due to the emotional side of suddenly becoming disabled. When you first become disabled, it’s hard not to talk about it frequently. When out of the blue, you’re in pain all the time and everything becomes a disability challenge, it’s a big part of your life. And when you aren’t even really well enough to be attending as many classes as I was, you have virtually no energy or time to socialize outside of class.

The cliques formed quickly last year, and I found myself an utter and complete social pariah just as fast. A disability makes other people uncomfortable – it’s proof that they, too, could suddenly lose their health. Something that no one wants to face. And because they don’t want to face that realization, they don’t want to face a PWD, especially not a young one.

So here I am, in a city I’ve lived in for just a year. I could count on one hand the number of friends I’ve made in the last year who stayed friends. I did meet my amazing boyfriend here, and as I said, I did make a handful of friends, but it’s been very hard socially. When you have so few people to lean on, it’s hard not to burn them out. You can’t ask for too many favors, too much support, too much sympathy/empathy.

To be completely honest, this is part of why I am so excited to have a service dog. I think that having someone who is able to always be there for me, even if he is furry and doesn’t really get it, will help. Or at least, I hope it will!

This is not to say that I do not recieve support from my boyfriend. He is probably the most supportive, empathetic person I have ever met. If I need a cheerleader, he is there. If I need someone to talk to/at because I’m just so pissed off about fighting my insurance, my doctors, my medical equipment providers, he listens. But it’s hard on him when I fall apart, when I cry. I hate how much it rips him up when I am upset.

But the boyfriend can’t be with me all the time, and frankly I don’t want to burn him out, either!

So here it is – the social reality of a new disability is loneliness. It’s a lot of time with me and my computer, me and the art that keeps me sane, me and my schoolwork. In the past month, since the boyfriend and I have moved in together, I spend a lot less time alone than I did before. I still don’t get out of the house nearly as much as I’d like, and other than the boyfriend, I think my doctors see more of me than anyone else.

Ah well. less than 3 weeks to service dog training.
Speaking of which – I am still $300 short on my fundraising. Please, folks, click the donation button over to the right! Even $5 helps, every little bit helps. Thank you all!

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