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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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