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Posts Tagged ‘life’

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

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

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

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

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

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

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

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

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Thank you.

Alan,

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

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

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

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

 

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

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So, I’m on vacation.  We flew out on the 11th, stayed a few days in a nice hotel with my folks, and then went up to the lake in the mountains.  The last day at the hotel, my dad suggested that we do a few miles of whitewater kayaking.  Being a bit of an adrenaline junky, I love me some whitewater.  Mom doesn’t usually participate in very physical stuff, so it was me, dad, and the fiance.

It was a great time, and while I had some sore, tired muscles at the end, I thought that it had gone well.  My back didn’t hurt, and I didn’t hurt anything while I was rafting.

Enter the next day.  My hands and wrists were swollen up bigger than they have been the whole time I’ve had this maybe-rheumatoid arthritis, and so painful that even with a vicodin added to my normal pain meds, I couldn’t sleep from the pain.  The tendonitis in my forearms is the worst I’ve ever had it.  My biceps are sore.  It astonishes me that I don’t have any backpain, though.

Four days later, I’m still puffy and painful in the hands and wrists, and the tendonitis in my forearms is still actively painful instead of just acting up when I do something specific that annoys them.  I did finally buy tendonitis straps yesterday, and it seems to have made things improve dramatically.  Sadly, the drug store didn’t have the arthritis support gloves you see so often, so I don’t have anything to help with my hands.

Other than that, the vacation has been amazing.  This whole trip has been in dry country, first the high desert, and now a relatively dry alpine climate.  I can’t express to you how much better I feel when I’m a drier place.  If it weren’t for the trouble I’ve had sleeping due to pain (and a relatively hard bed), this vacation would be pretty well perfect physically.

It’s a small family reunion, so my fiance has gotten to meet the far north branch of the family that never comes to anything and the central coast folks as well (who likewise rarely come to anything).  All told, there are just over 20 of us now with another 3 expected today.  He’s getting on well with him, and coming out of his shell nicely.

Tomorrow, we have rented a waterski boat.  I know that I shouldn’t, but I am going out.  I will definitely go tubing behind the boat, and I’m thinking about also using the kneeboard.  I’m probably not waterskiing, though – I was never all that good at it, and it means a lot more stress on my hands than kneeboarding.

Hudson approves of our vacation local because there is lots of grass for him to use for doing his business, not to mention that there are critter smells – squirrels, chipmunks, rabbits, raccoons, and there’s a chance of the occasional coyote or bear.  He’s not sure about all of my kin, mostly because we’ve all been packing into one livingroom/diningroom together for dinner.  The crowd makes him a bit anxious, but a few at a time he likes most of them.  My nephew, Gavin, has been making him a bit nervous when he hops around (as 3 year olds are wont to do), and my cousin’s 4-year old makes him very anxious – probably because he’s not as gentle as he ought to be and because the damn kid won’t leave him alone unless I run him off.  I get very concerned when I see a dog moving away from a kid and the kid following – that’s asking for a bite.  And the last thing I want is a dogbite incident involving Hudson!

Anyhow, I hope you are all well and enjoying the tail end of summer.

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One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

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Okay, we’re not really getting married that soon, but I thought you would all like to know, my boyfriend asked me to marry him.

So we’re engaged now.  We’re not planning to get married for 4-5 years for mostly financial reasons, but there’s nothing to prevent us from getting engaged now.

We couldn’t be happier.  Well, okay, I suppose we could, because I expect that getting married feels even better than getting engaged.  Anyhow, I just wanted to share the happy news with all of you out there.

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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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This is my post for the Assistance Dog Blog Carnival.  I’ll link to the Carnival post once it’s up!

The theme for this Carnival is ‘Reactions’.

One of the things they warn you about when you go to get a service dog is that you’re about to become a lot more visible, and they’re right.  They’re so right that even when you expect that, it’s a little overwhelming.  You can’t so much as go pick up your medications at the pharmacy without someone making a comment.  Maybe they’ll ask to pet him.  If you have a dog like mine, who isn’t definitely of a recognized breed, they’ll ask you what breed he is, and often make suggestions as to what they think he is (some of which will be truely absurd).  They’ll comment on how well behaved he is, and some of them will talk about wishing their dogs were as good.  They’ll tell you you have a handsome dog.  They’ll comment on your gear.  They’ll point you and your dog out to their children.  The vast majority of them will say your dog is a guide dog, because the use of other types of assistance dogs isn’t as well known.

It’s kind of exhausting, and every now and again, I find myself wanting to say one simple thing to them: he’s not here for you.  I don’t get to, though, because as a service dog partner, I am treated as an ambassador for all assistance dog pairs out there.  I have to make nice, because a bad interaction with a service dog or their partner might make someone stop letting assistance dogs into their businesses, which amounts to not letting people with disabilities into their businesses.*

So here’s what I want to say, when it’s been a long day and I’m just trying to finish up and get home.  Please be warned that the rest of this post is extremely sarcastic and a bit angry.

Yes, I know every dog lover is happy to see my dog out in public.

Yes, it’s very nice that you’re not petting him, good for you on reading part of the signs on his gear.  I wish you got the ‘do not distract’ part, though, because your bending down and babytalking at him is getting his attention and I’m going to have to give my dog a verbal correction for something that isn’t entirely his fault so that he doesn’t learn that he can pay attention to other people like that.

Yes, I’m sure your dog looked just like him, except small and white and not so fluffy.  How very similar.

Yes, you know what?  My 65 pound dog is part ‘scotty dog’.  How ever did you guess?

Oh, by all means, please distract my dog from what he is doing and damage his training by petting him.  That is ever so good for us.  I will remember you the next time he dashes down the stairs and knocks me over so someone can pet him.

Please, give my dog human food!  It’s not like doggy digestion is a bit on the delicate side and human food isn’t designed for them.  I’m sure I won’t be dealing with diarrhea for the next two days.

Why hello stranger, it is ever so kind of you to take pictures of us without asking me if it’s okay!  I love being an object of curiousity for you!

How wonderful it is that you let your children run over and pet strange dogs without asking the owner first!

Please, ask me if you can ride my dog.  Yes, that harness on his back there is for your entertainment, and I haven’t heard that one before.

Do you really need to know what breed he is?  How clever of you to guess.

I’m so glad you approve of his haircut.  I’m not sure if you’re asking if I groom him myself because you are impressed by what the widdle crippled girl can do or because you want to show off your own dog grooming knowledge.  Maybe you’re looking for the name of a good dog groomer.

Why yes, he does wear boots when it’s snowy out.  Gee, no one has ever told me how cute they are before.

Please, don’t feel like you have to ask if I mind talking, even though I’m near collapsing and exhausted and flushed in the face.  I’m sure you could tell that I came here specially to chit-chat with you while I wait for the trolley to come.

What this all adds up to is one little thing: I’m tired of getting singled out by people who are looking for any excuse to talk to the girl with the dog.  Yes, I’m sure that I’m a curiousity, and you rarely see other assistance dogs, and you’re curious.  But please, take your curiousity online the next time.  Even if you go to another service dog user’s blog, they have the luxury of answering you when they have energy and patience to do so.

I don’t want to be stared at, any more than I did when I used crutches.  I’m a normal person going around doing normal person things, and while I love the furry little pants off Hudson, I don’t want my every public interaction to be about him or about the disability that causes me to need him.  I just want you to treat me like anyone else.  Do you know how long it’s been since anyone commented on anything other than my dog and my braces?

* This sentence originally said “…someone stop letting dogs into their businesses.”  Sharon pointed out that it’s not about the dogs, it’s about the people with them.  You see, under the Americans with Disabilities Act (ADA), it isn’t the dogs who have rights, it’s the people-with-dogs who have rights.  It’s a pretty important difference, which is why I thought it was worth correcting.

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When you have disabilities and illnesses, you inevitably get people asking how you live with them.  The short, pat answer is one day at a time, and there is some truth to that.  The longer answer is what I’d like to address today.

For me, at least, each piece is different.  Some you just make little adjustments for; some re-work your world and change everything.  Some you hardly ever think about, while others require your attention on a daily basis.

Now, I’ll be frank with you, the list of things that don’t fit the norm with my body is pretty extensive.  I don’t have a single system in my whole body that is unaffected.  I’m not going to go through all of them because it would take forever.

So let’s start with a relatively common one: asthma.  I developed asthma when I was 12.  At first, it was relatively mild, so it was just annoying.  Sure, I carried an inhaler at all times, but I really only needed it if I was running or swimming hard.  When I was 15, it took a sudden turn for the worse.  That was when it became terrifying.  I remember the first attack that sent me to the hospital.  I remember my mother calling the nurse’s line at our health insurance to find out what we could do.  I remember them setting me up so I was laying back at a 45 degree angle on the couch and having a humidifier blowing moisture into my face, which only made it worse.  I remember getting  woozy because I couldn’t breathe.  I remember my chest hurting.  I remember the tense ride to the emergency room a few blocks from my parents’ house, where they gave me a breathing treatment.  There are few things more frightening than the first time you are almost completely unable to breathe.  It hits you at a visceral level, it makes you…it makes you fear death is stalking you.  I also remember my first coughing-type asthma attack, where with each cough my lungs tightened further.  I remember the asthma attack at the Girl Scout camp up in the mountains, where I had to hang on for 30 minutes as they drove to the nearest hospital, desperately hitting on my inhaler and trying not to panic because panic only makes the attack worse.  Of all my conditions, asthma may be the scariest, because when it hits you are completely at its mercy until you can get a breathing treatment.  You live with it by always being prepared – taking your inhaler with you everywhere, and if you have a preventative, taking it every day.  You live with it by knowing where the nearest emergency room is.  You live with it by having people in your life around you who know you have the condition and who help you when it hits.  You learn breath control and breathing techniques that help you to partially control your asthma attack with your mind.  And you live with the fear, this little dragon coiled ’round your heart, ready to squeeze when you feel a little wheeze in your breath or something makes you cough, that tension when you see someone smoking and know that might be enough to set you off.  I mean, you get used to it, because it’s always there.  It gets less scary, and the attacks are no longer terrifying but more a nuisance.  You don’t think ‘Oh god, I can’t breathe, I can’t breathe!’ on your thirtieth severe attack, you think ‘Damn it, off to the ER again, I hate this shit!’

Asthma is one of the hard ones because you know that it can kill you and fast.  Hell, it can easily kill you, if you don’t manage it aggressively.  When things are good for a long time, your vigilance slackens a little, until that time you get a little wheezy and realize you don’t have your inhaler.  Hopefully, it’s a small attack that reminds you to keep your inhaler around; my pediatric asthma specialist told me a story about a friend of his who died because she didn’t have her inhaler on her person and she didn’t get to the ER fast enough.

It’s a strange balance, between the nuisance and the fear.  Nowadays, I only get scared by my coughing-type attacks, partly because those tend to be far more severe.  Even those, it’s just a case of getting headed towards an ER as soon as the coughing starts, because I can’t stop them without a breathing treatment.  The other attacks, I just get annoyed.  I know the likeliest result is that I’m going to be stuck focusing on my breathing for the next half-hour, and not being able to do anything else.

Let’s go with the big one – Ehlers Danlos Syndrome.  To be perfectly honest with you, it varies wildly how this one hits you.  I have a moderate case of EDS, so I can’t really describe what it’s like for people with more severe cases.  I was born with naturally very tight joints, so it took longer for EDS to really damage my joints.

You don’t think much of it when you’re young and relatively healthy, and thus undiagnosed.  It doesn’t affect you much then.  Sure, you get injured more often than other people, and sometimes in ridiculous ways, but it’s not something that really sticks out all that much.  People just think you’re a clutz, and for that matter, you probably do too.  I sure did!  It was strange, because when I was focused on what I was doing, I had unusual precision in moving, but as soon as I wasn’t in that extremely tight focus, I started banging into tables and such.

EDS is mostly a nuisance.  Dozens of braces I’m supposed to be wearing at any given time (finger, wrist, elbow, knee-and-ankle-and-foot).  I hate the way it makes me stand out – there isn’t really a way to hide braces that run from the middle of your thigh all the way down to the sole of your foot.  Nor can you hide braces on your fingers, unless you wear gloves, which would make you stand out even more.  (I am thankful that I have the relatively pretty finger braces – I know some people are stuck with ‘fleshtone’ plastic, while I wear much more slender bands of silver.)  I hate that I can’t carry my own groceries.  If I go grocery shopping, I have to get someone to help me out to my car and have someone at home to lug them in.  I can’t even pick up a gallon of milk without hurting myself.

I hate that my hips and shoulders sublux at the slightest provocation, and that we haven’t been able to effectively brace them.  I hate the pain that comes from all these injuries that have happened over and over and over.  I sometimes feel defective.  I often feel broken, hence the title of my blog.  Certainly dysfunctional!  After all, I can’t function in the ways I used to.  I don’t usually compare myself to normal, but I do compare myself to younger Kali.  The Kali who danced 12 hours a week.  The Kali who went to grad school and carried an overload on classes.  The Kali who liked strength training at the gym.  Even younger, the Kali who loved to play soccer.  The Kali who drove an hour and a half to go shooting (archery) twice a month with her friend, and shot for hours.  The Kali who could hand sew like lightening.  The Kali who wore high heels.  Kali the swordfighter and fencer.  I miss being that Kali.

Some of living with EDS is embarassing.  My bladder leaks, so I have to wear pads all the time.  It’s frustrating – it isn’t the typical kind of leak people have, where a few drops escape when they laugh or sneeze.  That kind, you can do exercises to strengthen the muscles.  Mine just seems to be this light, constant dribble.  When I have to use the bathroom, it usually hits suddenly with a great deal of urgency, which means I have to abruptly break off conversations to run to the bathroom.  It’s also embarassing to be a twenty-something who has to ask people to carry her groceries to her car and ask people to give up seats on public transportation and use a scooter and park in the disabled spaces.  I’m mostly okay with it, it just twinges when people look at me like there is something wrong with me for needing assistance.  It embarasses me and it makes me mad, because what the hell do they know?  Who are they to assume that everyone who looks ‘normal’ doesn’t have some kind of disability?  Who are they to judge me?  If my doctor is willing to sign off on disabled plates and placard, who are they to think I don’t need it?

Onward, next disability: POTS (Postural Orthostatic Tachycardia Syndrome).  This one has been extremely hard for me, in part because it kind of comes and goes.  There’s a baseline that’s always there, that makes me extremely sensitive to temperature and even mild dehydration.  It’s annoying, especially when I go somewhere that doesn’t allow me to bring in water and I have to pay a fortune for drinks.  I often get a bit light-headed and dizzy when I stand up, and I have to hold onto something until it passes.  I suppose it’s a little embarassing, especially when people freak out because I abruptly sit down in the middle of the office to avoid falling.  Mostly, in that stage, it’s managable, as long as I can avoid heat and keep fluids in me.  When it gets too hot, or I get too dehydrated, though, it’s…well.  It’s unpleasant.  One of the first things to go is my ability to think coherently.  By the time it physically shows that I’m not okay – when I turn scarlet and collapse – I often can’t even explain what’s wrong to people around me.  “I have POTS” doesn’t mean anything to most people, and it’s about the limit of my explaining.  I can sometimes manage to tell people that I’m too hot, or that I need water, but not always.  That’s the scary part of this condition – I can’t really take care of myself when it causes problems.

But then there are the flares – in the flares, I can’t sit up without medication, because it makes me so dizzy, and I get headaches.  When I’m in a flare and it’s bad, I can’t walk without someone holding onto me, supporting some of my weight and keeping me from falling.  I get stuck in bed because sitting up is impossible.  I fall asleep.  I can’t remember anything, and get nonsensical.  Part of what has made this post take so long was the tail-end of a POTS flare.

And that’s not all the symptoms that come with POTS.  I get random episodes of tachycardia, where my heart just starts RACING, racing so hard I stagger and lean into a wall or fall.  I get occasional extra venticular beats, which feel like being kicked in the chest.

POTS is, to me, one of the hardest to live with.  It’s not predictable, and I have only so much control over it.  It traps me in the house when it’s hot, and stops me from being able to tolerate much less enjoy what was once my favorite season: summer.  I miss the days when the glowing warmth of the summer sun was pleasurable, was an excuse to break out little strappy summer dresses that made the boys stare.

Next up, migraines.  Migraines are a royal pain, and somewhat dangerous.  They creep on, slowly increasing pain until that’s all there is.  All my senses become jagged spikes of pain, and I need to close myself off to as many as possible – I need to lay down on smooth sheets and a soft bed, in the dark, and quiet.  I usually end up putting on a blindfold in addition to being in a dark room, because the dark has to be absolute.  I turn on a fan to provide a constant noise that smoothes over the serrated teeth of other noises.  I’m nauseated, and unfortunately the migraine medication is a nose spray.  Postnasal drip means it ends up at the back of my mouth, and it is incredibly, horribly foul tasting.  Not a good combination with the nausea (and dizziness) that are already swelling up.  Sometimes I throw up, especially with the more painful ones.

The complex migraines are even worse.  The pain is indescribable, and is bad enough to make me vomit over and over again.  I hurt so much I want to whimper and sob, but the sound and motion of those make the pain even worse.  Sometimes it gets so bad that I can’t stop myself, even though I know it’s only making things worse.  Lights blur into giant stars of blinding light, like a sunset on a smeared windshield.  Sometimes my hands twitch.  I lose spots in my vision sometimes.  This is when the migraine gets dangerous – I can’t transport myself, by driving or by public transit.  I often end up in the ER because I can’t stop the pain with the migraine medications I have and I need IV pain medications.  For those of you who know your opioids, morphine usually isn’t strong enough; I usually need dilaudid if it’s one of these vicious beasts.  For those of you who don’t know them, I need the STRONG stuff.  The stuff they normally give you when you come in in extreme pain?  I sometimes don’t even feel it.

With migraines, you live knowing that you carry around this mostly quiescent beast that will occasionally turn and rip into you.  If you’re lucky, you have triggers you can avoid, foods or smells or lighting effects that you can avoid and prevent the migraines.  My main trigger at this point is tension in my neck and shoulders, which doesn’t sound all that bad, but I’ve been in 6 car accidents, partially torn a muscle that connects the shoulder to the neck, and have dislocated both shoulders frequently.  I have chronic problems with the tension in all of the muscles in my back, neck, and shoulders.  Sitting in a less-than-comfortable chair for an hour can trigger a migraine if I don’t keep shifting and stretching.

GERD + IBS.  Ooh how I hate these.  GERD is gastro-esophogeal reflux disorder, which basically means that there isn’t as good a seal at the top of my stomach as there should be.  I take an acid-blocker to help with this, but it’s not enough on its own.  I have to mind what I eat, and I’ve had to eliminate caffeine except for chocolate (which I couldn’t bear to get rid of).  If I have a greasy meal, I have to be good for the next day and a half at least.  I can’t manage really spicy meals anymore, which is a shame because I love me some spices.  And when I say spicey, I don’t just mean heat – I also mean pepper and cinnamon and whatnot, because they’re hard on the GI system.  The other issue with the acid-blockers is that I have an astonishing ability to acclimate.  I get an average of 6-10 months per drug before they stop working well enough.  Right now, I’m probably at the end of a drug.  It’s scary, because I’ve gone through all of this class of drugs.  We tried moving me on to the next alternative class of drugs, and it was far worse than the failing drug – I felt like my stomach and my esophogas were on FIRE, and I kept vomiting small amounts.

Then there’s the other half – IBS (irritable bowel syndrome).  Caffeine makes me have horrible cramps, if I have much at all.  Hell, I get horrible cramps for no apparent reason – they just strike all the sudden, and BAM I’m curled up in a ball because it hurts like you wouldn’t believe.  Spices will trigger that, too.  Appalling amounts of gas, which is of course embarassing.  Diarrhea and constipation.  I rarely get that sense that I should go to the bathroom soonish – it’s always NOW NOW NOW.  Very inconvenient when you’re travelling.  It hit on the road at one point, when I was maybe 10 minutes from home, and I thought I could make it home.  Um, well, let’s just say it didn’t work out that way.  I pulled into a fast food place that I sometimes ate at and cleaned myself up as much as I could.  (Worse, I was on a date – he was following me to my place, where we were going to have tea and snuggle.  It was probably our third date.  We got to my place and I told the now boyfriend that I was sorry, I needed to shower RIGHT NOW and I understood if he wanted to leave.  He was still there when I got out of the shower, and wasn’t phased when a very mortified Kali explained what had happened.)

I also have Raynaud’s.  Raynaud’s is basically an extreme sensitivity to cold.  See, when your body gets really, REALLY cold, it starts closing up the veins in your extremities so that your blood stays in your core.  It’s why people get frostbite on their extremities mostly.  My body starts doing that sort of thing at much milder temperatures than most people’s do.  It means that I tend to have corpsicle feet, waxy pale colored and cold.  My hands also do it, and my nose and ears.  And don’t get me started on how incredibly painful it is when it hits your nipples.  (Our bathroom is really not insulated enough, and this was before I started using my little space heater to warm it up in the winter…)  I suppose when it’s cold out, I’ve also had it hit on my butt, where it’s not covered by my jacket.  This is one that is mostly just a nuisance, where you have to be careful to bundle up properly and gently re-warm things that have gotten too cold.  It’s uncomfortable, sure, and sometimes even painful.  It’s a little embarassing.  It’s also made the boyfriend almost jump out of bed – I curled up against him and my foot hit his shin, and he JUMPED.

I’ll finish up with the last big one: mental illness.  I am bipolar, not certain which type because I was originally diagnosed type II but started having symptoms more like type I a couple years ago.  I also have PTSD and panic attacks.  The three end up kind of interwoven, with each affecting the others. 

The primary piece is the bipolar, though.  Looking back, I’ve probably had it since around puberty, which I understand is pretty typical.  I was diagnosed at 17; I suppose it would be more accurate to say I self-diagnosed and had it confirmed by my therapist.  I was taking a psychology 101 course, and we addressed abnormal psychology for I think two weeks.  I read the description of bipolar and went ‘oh my god, that’s ME!  Except that I don’t get angry like it says in the book.’  My therapist said that it’s because I’m type II rather than type I.  The thing about bipolar is that essentially your emotional state is a tightrope walker.  It’s easier for us to be pushed over into exaggerated agitation and exaggerated depression by life events, and sometimes they just happen without triggers because it’s a chemical imbalance.  The depression is the harder part, for me.  You just feel…stuck.  Tasks feel far larger than they really are when you look at what needs to be done, and far smaller than they really are when you look at what you’ve accomplished.  It’s hard to feel inspired to do anything.  Hard enough to make yourself do the things you love; nigh impossible to make yourself do things you don’t like.  You feel so insignificant, as if nothing you can do makes a difference, nothing matters, why the hell are you trying?  Don’t you get it, you don’t matter!  It’s very hard to get out of.  It’s like being in the bottom of a pit with a shovel and trying to get yourself out of it.  If you do what’s natural with a shovel and just keep digging, all you do is get deeper.  You have to make yourself try to dig one of the sides into a slope you can walk up, and you deal with collapses and sliding and losing your footing and ending up back in the bottom of the pit.  Often, you need a rope lowered to you – therapy and appropriate drugs.

Mania is harder to explain.  First, let me say this – there are two levels, there’s hypomania and ‘true’ mania.  Hypomania is often not uncomfortable to the person who has it.  In my case, I get hyper-focused and goal oriented, and work for 8 hour stretches without remembering to eat, find myself looking up from my work to see I should have been to bed hours ago, sleep 6 hours and bounce up like I’d had my usual 9 hours.  That’s what I had as an undergrad, and it wasn’t really all that bad to deal with.  I got a lot of things done, and if I occasionally prioritized creative things over academic things, well, I didn’t do myself much harm.  True mania….well, a therapist explained it to me this way.  In mania, your baseline arousal gets raised.  With a higher baseline, something that would have worried you normally consumes you, something that would have been an irritation becomes infuriating, and something that would have given you a moment of pause becomes terrifying.  It’s like all of your emotions got amped up.

My bipolar is mostly managed via medication.  For a long time, I only dealt with depression and hypomania, so I just used antidepressants when I was depressed and came off them when I wasn’t, with a therapist’s supervision.  Nowadays, because I have mania symptoms, I do take medications all the time.  I still have to be careful how much stress I allow in my life; it’s easy for stress to push me into depression or mania, or worse yet, a mixed state, where I feel like molasses in winter except that I’m angry, or scared, or…whatever.

Trigger warnings: description of PTSD symptoms, and panic attacks.

I’m mostly recovered from PTSD.  I was in an abusive relationship just before I turned 18, and I kind of shoved all of it into a box and didn’t think about it until I was 22.  It took me about three years to get to the point where it stopped being a Thing in my life.  One of those years I spent in intense therapy, which is kind of like having major emotional surgery; the next year, I did no work on it and just let myself recover; the year after that, I did some lighter work to ease the scar from the emotional surgery.  It still occasionally pops up, but it’s rare.  I’ll have times when getting boxed into a corner makes me go into a panic, or when someone reaching in too close to me feels threatening, but they’re rare. 

When it was in full swing, any unexpected touch would send me into hyperventilating, and I can remember being in such a panic that I was compelled to abruptly leave, drive home, lock all the doors and windows in the house, and then lock myself in the bedroom, curl up in bed, and get online to instant message with someone I was comfortable with.  There are few things as terrifying as driving on a freeway when you’re in a panic attack; you’re freaked out that someone will hit you, what if someone on the other side of the freeway goes over the median?, oh god that railing was close, where did that car come from?! that truck is white-lining into my lane and oh my god there’s no shoulder here…so on.  I slammed the door in front of my roommate because it didn’t register that she was behind me and calling my name.

Nowadays, I just have times when leaning over me is triggering, or cornering me freaks me out, and I’m still not great with unexpected touch.  People who are close to me get educated on avoiding triggering me, and what to do if I get triggered.  It’s mostly a non-issue, but it comes up now and again.

Panic attacks are managed by breathing techniques, mind-body focus, and medication.  I also know certain actions that will help with a panic attack, like letting myself check that the front and back doors of the house are locked and the windows are closed.  When I have them away from home, I seek out places where I can some space to myself, like a bathroom or a dressing room, or better yet my car.  I also speak to myself, remind myself that no one is really going to hurt me, and that I am safe.  I also learned, over the years, that getting myself curled up in bed and picking up a book that I have read so many times it is a familiar friend is almost guaranteed to calm me down.  Thankfully, being in recovery from PTSD and having my bipolar well-medicated mostly prevents panic attacks.

I think that’s all the big ones.  I guess what it works out to is a lot of preventation and preparation for ‘just in case’.  A lot of adjustment, that’s for certain.  My life is very different than it was before I developed these disabilities, and part of coping with that is finding new hobbies and new friends who get it, new places to talk, so on.  Since I became disabled, I’ve focused a lot more on my creative side.  I knit and crochet and paint and make jewelery now.  I blog about living with a disability.  I have a service dog.  I’ve made new friends who have disabilities, and one of them has become a roommate.  I have a boyfriend whose capability to understand and help is astonishing.  The biggest part of living with it is making it worthwhile, and you do that by finding things that make it feel full to you.

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Hi everyone, I just wanted to let you know where things stand.

We’ve upped my dose of the medication that treats my POTS, and thus far it seems to be at least somewhat helpful.  I’m having much fewer dizzy spells and haven’t collapsed again, which is good news.

School-wise, I decided it was in my best interests to withdraw from my classes.  One of my classes, instead of withdrawing, I am being allowed to get an extention until August 29th, which means I can basically not work at all on it until the end of May without problems.  That’s what I figure I needed, to get things under control health-wise.  I am disappointed to do it, but I don’t see a better option at this point in time.

As far as the blog goes, part of the quiet lately is because I am writing up a truely massive post about what it’s like to live with my disabilities, singly and as a whole.  I hope you enjoy it, when I finally get it up there!

~Kali

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The last three and a half years have seen a continuous downward spiral of my health.  It’s been hard, watching bits and pieces of function just fall away.  I’ve always been competitive and driven, so watching this happen has made me want to scream.

This has been the first semester where I think I may need to completely withdraw for health reasons.  I started the semester with a sinus infection that just wouldn’t go away.  Three courses of antibiotics knocked it out, but then a viral infection settled in, and it took forever to clear out.  That was just the start of things.  Then I suddenly started having tons of pain in my left arm and hand, with my fingers spasming and dropping things.  At the same time, my dysautonomia symptoms started flaring worse.

My doctor tells me that the symptoms in my hand and arm are a pinched nerve in my neck.  They’re hoping that it’ll clear up with physical therapy, heat and ice.  It’s better now than it was before, but I still have times when I can’t type, when I can’t write.  It stinks.  And it HURTS.  My shoulder, my arm, my hand…they all hurt, sometimes stabbing, sometimes electrical, sometimes pins-and-needles so bad that I have to shake my arm because I can’t stand it.

And the dysautonomia…well.  I collapsed on Monday.  I collapsed again on Thursday, on the way to class.  I missed work on Friday, because I’d collapsed twice in a week.

I’ve missed so much school, so much of my clinical, that I probably need to take a medical withdrawal this semester.  I’m failing everyone.  I’m scared, because my dysautonomia has gone so badly awry and because I worry about the pinched nerve.  I’m afraid I won’t be given a chance to finish my degree.  And I am tired.  I am so, so, SO tired of all of this.

So that’s why it’s been quiet around here, and I’m sorry about that.  I’ve missed out on things I very much wanted to be part of, and I’ve missed talking about things that were worthwhile conversations, and I’m hoping that someday that will change.  I’m also afraid of what will have to happen in my life for that to change.

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