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Hi Guys,

Sorry I haven’t been updating. See, here’s what’s been going on. The Lyme infection that started last spring but only got diagnosed last December finally gave up the ghost after 4 courses of antibiotics. I was starting to feel a lot better. Hudson rebounded quickly from his fear of the vet’s office, and thinks it’s fun and interesting again. We adopted a second dog, Bailey, who we think is an American Staffordshire Terrier, which is one of the breeds that gets lumped into ‘Pits’ – about 50 lbs, black and white tuxedo markings including a dusting of white on her snout that makes her look like she poked her snout into a snow bank, and the most people-oriented dog I’ve ever met. She’s a dog who loves her people so much that she dances and wags her whole body when you’ve been gone for 30 seconds (no exaggeration). Unfortunately, she’s a rather oily dog, so we can’t let her in the bedroom, because it makes both of our allergies worse, so she sleeps in her crate downstairs. She adores my fiance, who feels pretty similarly about her, and they take each other out on walk/runs every morning and some afternoons. She’s a rescue, and has had at least two litters of puppies before she was removed from her former owner by the SPCA. She’s somewhat fearful of women and children, but she seems to be improving quite quickly now that she’s in a happy home. The SPCA estimated her age at 3-5, but I think she’s even younger than that. She acts rather puppy-ish in the most endearing ways – the playfulness and desire for cuddling and belly-rubs. We’d hoped that Hudson would take to her; in practice, they mostly tolerate each other and only very occasionally play together, while the closest they come to cuddling is both of them trying to get the spot at my feet.

About 3 weeks after we adopted her, Bailey very suddenly got very, very sick. She couldn’t keep down even water. It turned out that at some point before we got her, she had swallowed a corn cob. The vet told us that’s not uncommon for dogs; apparently, they love corn cobs. Anyhow, it was blocking the opening from stomach to her intestines, which is why she was so sick. She needed surgery, and quickly became our $5,000 mutt. Fortunately, the shelter provided us with a health insurance plan that lasted for 30 days after the adoption, so $750 of her care was covered (the maximum benefit of the plan). Anyhow, while that make for a really eventful week, that’s not really where all the trouble started.

In October, less than a week after we adopted Bailey, the dogs knocked me over. Hudson was frisking because I’d just gotten up for the day and Bailey was frisking because I’d just let her out of her crate. They were running in and out of the kitchen doorway, and one of them (I think Bailey) jumped sideways to avoid colliding with the other and instead knocked my leg out from under me. I fell sideways into the wall. It felt like a minor thing, and I already had a prescription for physical therapy on my back because I’d twisted wrong in my sleep and tweaked something. So I started seeing my physical therapist, who is really, really good. Usually, when I’ve done something to the muscles in my back, I start feeling better VERY quickly – like, within 2-3 visits. But this time, it was getting more and more painful, and I couldn’t get to his office because my fiance’s hours kept him from driving me and the taxis were only making things worse. I saw my doctor and got referred to the rehabilitative medicine specialists attached to the good inpatient rehab center in my city. They put the fear of god in me, because they pointed out that by the time I saw them, it was sounding more and more like a spinal injury. Now, there’s a chance that all that’s going on is that the paraspinal muscles – the ones that run right along the spine, which in older medical lexicon are known as the erectors spinae – are spasming and pressing on the nerves as they exit the spine. But there’s also a solid chance that I’ve injured my spine, either in the neck or in the low back/lumbar region. I finally have the MRI scheduled for this Saturday, and they’ll be doing a whole bunch of views of my neck because there’s a chance that what’s going on is that I have cranio-cervical instability, which is a Known Thing in people with EDS (in fact, one of my closest friends just had surgery to stabilize hers this summer). Basically, your head is attached to your spine by connective tissue, and as we people with EDS have lousy connective tissue, sometimes the head isn’t attached well enough, which can lead to what’s called internal decapitation – pretty much what it sounds like, the head and spine moving apart and severing the spinal cord. It’s a scary possibility, and unfortunately this recent injury ups the likelihood that I’ve got that going on somewhat.

Anyhow, for the last half of October, November, and the first half of December, I was basically stuck in bed totally horizontal more than 20 hours a day. Some days, I only got out of bed long enough to go do the very minimum to survive – eating and using the bathroom. I hope you’ll all forgive me for being somewhat incommunicando under those circumstances. Out of the blue, I woke up one day in December feeling much better. Like a sensible person, I decided to travel across the country and spend the holidays with my family. Okay, I’ll admit it wasn’t sensible, but I only get out there on alternating years for Christmas, and I have a very much loved nephew who is growing up so fast…well, I couldn’t bear to miss the holidays. Fortunately, things have stayed much the same physically for me for the last month or so. I have bad days now and then, but for the most part I can at least socialize for most of the day.

The new semester started this Monday, and I have already missed two classes (though only one was entirely my fault – the other is because I had to switch classes after finding out that a class aimed at people who ‘speak Spanish’ really demanded fluency, when my Spanish is more or less broken). The one that was my fault, well, I have 2 classes back to back Tuesday and Thursday, and the one that goes first on Tuesday is in the room with the chairs that are uncomfortable at best. With my back behaving the way it is, ‘best’ is not a common state.

So that’s where things stand now. I find out next week or so what my back looks like and how we’re going to have to treat it. It’s been quite, quite rough, and frustrating, and I lost a full semester of work, which means I have to petition to get an extra semester beyond what my school normally allows as the absolute maximum for people to graduate. The dean says it’s likely I’ll get it, but I’m anxious. And I’m anxious about my back. It’s just been more stress than anyone should have to deal with, but it sometimes feels like that’s just a day in the life of Kali.

A few months ago, we had a bit of a struggle with our landlord. You see, the landlord decided they wanted to sell the house we are living in. We were past the renewal date on our lease, and as such, I insisted that we get to stay – totally within our contract rights, but not something the landlord wanted.

The last two months, our rent checks have mysteriously ‘not arrived’ at the landlord’s office. Hmm. Bit suspicious, given the timing, eh? It means we owe an extra $50 each time, for being late on the rent.

Anyhow, we’re going to start sending the rent checks via Certified Mail so that we have proof of mailing, but I’d really like to pull the landlord out into the open, you know? I want proof that we were cheated, in the hopes that we can do something about it. Anyone have any ideas?

A friend of mine who has been going through some real hard times (she’s disabled and hasn’t gotten approved for disability yet) has a piece of her work up for auction on ebay. She’s an awesome artist and about 1/2 of the money I raised a few years ago to get Hudson came because she publicized my fundraising. It’s only fair to turn around and help her when she needs it!

Anyhow, this lovely piece shows what an artist can do with an item from her childhood. This is her first publicly available piece of this particular variety, and I think it’s really lovely.

Please, have a look, and if you know anyone who might be interested in this piece, forward the link to them!

http://www.ebay.com/itm/ws/eBayISAPI.dll?ViewItem&item=180891945132#ht_500wt_1333

Thanks,
Kali

Hi guys,

Sorry I haven’t been around much. It’s been a rough several months. I’m still having my Lyme disease treated (and that’s mostly going well), I had a minor back injury (a small fan fell and hit me in the back) which is just now being treated because I had bigger issues, I had a flare-up of POTS that literally had me stuck in bed, and the end of the semester was even more hectic than usual because I was dealing with all of THAT. Ugh.

It’s been quiet here for a few weeks now, mostly. It’s nice. I go to physical therapy, which HURTS (probably the most painful series I’ve had that was doing good – my ribs have to be mobilized every time, because the muscles between them are knotted up, so the mobilization hurts).

The only thing going wrong is poor Hudson. We noticed a few weeks ago that he was getting an ear infection. Up until now, he’s always gotten yeast-type ear infections (which is typical for floppy eared dogs who don’t swim), so we treated him for a few days with the leftover drops from his last infection, and it didn’t get any better. Okay, we thought, so we need something else. Took him to the vet, and the vet confirmed that we didn’t have the right medication. He gave us a twice-a-day antibiotic for 10 days. At first, it seemed to be going well: the infection started clearing up pretty quickly. But a week into the treatment, Hudson started crying when we touched his ear, and his ear started getting really gunky again. We called the vet, and rather than have us come in, the vet suggested that it he had a secondary, yeast-based infection, and had us switch back to the yeast meds. Poor puppy. We had him on that for all of two days, and things were continuing to get worse. He wouldn’t come when I called him if my fiance was near me, because that’s how we tend to position things for daily grooming, which had included ear cleaning for the past week.

After 2 days on the anti-yeast medication, with things continuing to worsen, I told my fiance to call the vet. They squeezed us in the same day, so poor Hudson got his ear looked at again today. Poor puppy. The infection had mostly been cleared by the time we stopped the antibiotic, but it had had a few days to rebound. There was no yeast secondary infection. He’d just had a reaction to the antibiotic drops – his ear was inflamed and angry, and anything we put on top of that was just making it angrier. Poor puppy!

I try not to be separated from Hudson, but sometimes the vet only has appointments that are too early for me to make. When that happens, my fiance takes Hudson to the vet alone. Apparently, Hudson has learned the route to the vet, because when my fiance made the turn that we always take going to the vet, Hudson started crying. He cried a LOT on this visit. He cried almost the entire time they were in the exam room. Another dog yelping made him start shaking and crying. When he wasn’t crying, he was displaying stress – shaking and panting hard. It was immensely pitiful.

Anyhow, he’s now on prednisone to bring the inflammation down and antibiotic pills. He’s definitely still got an infection, and it takes longer to clear it with pills because it’s basically a skin infection, but with the reaction, what else can we do? He makes himself cry when he plays, he cries when his ears get cleaned, and he doesn’t want to come to me when my fiance is not in his usual seat.

We hope that Hudson will both heal from his infection quickly and recover from the emotional stress of it. His trips to the vet alone with my fiance tend to be when he’s the sickest, and they’re definitely affecting how he perceives the vet. The last trip I made in with him, he acted stressed and unhappy to be there, when he used to think the vet’s office was a great adventure,partly because it’s the only place I let strangers pet him (I do take him out of harness first, so he knows he’s not working and can enjoy it). Maybe I’ll just have to start feeding him lots and lots of treats at the vet’s office. And hopefully, he’ll also recover from his dislike of coming over to me when my fiance is in a position to do something to him.

It’s frustrating sometimes, dealing with a fearful dog. Hudson is, well, just barely brave enough to make it as a service dog. It worries me any time I see him start losing confidence. I worry both about it being hard on Hudson and because it could have very bad repercussions on our partnership. It’s also frustrating that I can’t really work on desensitizing him, because the vet’s office is down a series of roads that are surfaced in a way that makes them very painful for me to drive over. I can, at least, work on his reluctance in the house, but the vet’s office response is another thing altogether.

There are definitely moments when the weight of being a service dog partner is a heavy one. You are so very responsible for this other creature, and service dogs are usually very sensitive creatures. Your relationship is fragile and deeply necessary for you, so sometimes you are weighing the good of your dog against your need for assistance. And sometimes…sometimes you have a situation like this, that has obviously been very hard on your dog, and there’s very little you can do to help. It hurts. Hudson is…the other part of me.

So I continue to be sick.

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

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

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

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

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

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

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

I’m not sure if most of you out there realize that there are big problems with how Paypal operates. BIG problems. Essentially, Paypal acts like a bank, but they aren’t limited by…well…any of the limitations that governments have put on banks – not in the US, not worldwide. That, in and of itself, is frightening. It is entirely at their option to decide whether someone is acting legitimately or not, and their definition of legitimately is…odd. A great many of us have buttons asking for donations to support ourselves, and Paypal’s statements on that kind of fundraising have been mixed. Last winter, when Regretsy.com was raising money to send gifts and money to families that didn’t have the money to give things to their children and celebrate the holidays in the style that the American Dream says we should, they used a donation button. Paypal decided they didn’t like it, and shut down ALL of the Regretsy owner’s accounts. They said things like, you could use the donation button to raise money for a sick cat but not a sick person. That, my dears, scares me quite a bit, as I know a great many people who have literally had their lives saved by monetary donations from the internet. My own fundraising years ago to pay for training with Hudson (after an unexpected major car repair) could have been declared inappropriate, and frankly I didn’t have another way to pay for everything at that point.

Recently, Paypal has started cracking down on indie publishing houses and what they publish. The one I know of in particular is Smashwords. Now, a great many of the authors on Smashwords, they live on what they are able to make by selling their work electronically. A good friend of mine, whose call brought in most of the donors who allowed me to get the service dog who has changed my life, is one of those people. I’ll be frank, what she publishes is porn. Well-written porn, with story-lines and characters that seem like real people. It’s what keeps a roof over her head, food on her table, and life-saving medication in her system. It’s her livelihood.

Paypal is restricting what authors can publish through those publishing houses, and frankly the way it’s defined, just about anything with a vaugely erotic content could be banned. Like many Paypal restrictions, it’s a very ill-defined, broad restriction. They are particularly tetchy about bestiality, rape-for-titillation, incest and underage erotica. Now, at first glance, you may shrug and say, who cares about porn and erotic writing, especially those areas?

Rape-for-titillation could describe most of the romance area, where there is a great deal of ‘oh no! oh no!’ followed by ‘oh yes!’, also known as bodice-rippers. Incest? Well, any time you attempt to portray noble houses in a manner that is true to history, you’re dealing with things like cousins intermarrying, which sure as hell sounds like a modern definition of incest to me. Bestiality includes things like shapeshifters in fully-human forms and mythical creatures with human (or higher) level intelligence. And underage erotica…you start worrying that your young adult authors where teens have their first kiss could be included! Certainly the works of well-respected authors like Tamora Pierce include fade-to-black sexual encounters between teens.

Yeah, there’s a lot of area covered. And if that doesn’t bother you, I’ve got one more point for you –

The people who hold my money shouldn’t have a say in how I spend it. My bank can’t tell me I can’t spend my money at an adult bookstore or an adult toystore, and that is a GOOD THING. It’s basic freedom. If the government has not made trafficking in certain goods illegal, my bank should not be able to affect my participation in that trade, either as a buyer or a seller. If we start letting the people who we rely on to move money around tell us what we can and cannot buy, I think we will find ourselves far, FAR more limited than our governments would ever allow. And that, my friends, frightens me. My bank, my credit card company, and Paypal should not be able to act as censors.

Please, folks, re-link this, spread it, talk about it, look into it.

There is a famous quote by a German Pastor who spent WWII in concentration camps. He was describing the actions of the German people, but I think it is appropriate here:

“First they came for the communists,
and I didn’t speak out because I wasn’t a communist.

Then they came for the trade unionists,
and I didn’t speak out because I wasn’t a trade unionist.

Then they came for the Jews,
and I didn’t speak out because I wasn’t a Jew.

Then they came for me
and there was no one left to speak out for me.”

Let us speak out, my friends. Paypal has shown in the past that it bows to public outrage. I, my friends, am outraged. I hope you are, too.

Oof

Boy am I ever glad I had done some reading about Lyme treatment before I started it.

Doctors rarely think to warn their patients about likely side-effects of treatment. In the case of Lyme, I’m not talking about the direct side-effects of the antibiotics, though to be perfectly honest those are pretty nasty too. Instead, I’m addressing what happens to a body when you treat a major infection. You see, if you have a lot of just about anything growing in your body and start killing it, you get some fallout. That is true whether you are talking about bacteria, viruses, yeast, or bigger parasitic organisms like worms.

In my case, it has meant an enormous increase in fatigue. It is also affecting my ability to think and communicate clearly. My memory is an absolute crapshoot, with more trouble remembering comparatively recent events (in the last year) and not as much affect on older memories. The Lyme was doing all of those things to me before the antibiotics; the antibiotics just made things worse. Ugh.

On the other hand, there were some swift gains. The swelling in my hands went away very quickly, and my pain levels dropped substantially. Fortunately, the fatigue and brain side effects seem to be fading, so I am getting closer to my normal. This is definitely a good thing.

Now if only antibiotics didn’t tend to result in yeast infections for me. This long course of antibiotics has caused excruciating yeast infections. I didn’t know they COULD hurt like that; I had always kind of assumed that people who complained about pain during yeast infections just had low pain tolerance. I really should know better, being someone who lives with chronic pain. Ah well. At least I can just take a pill and it improves things enough to make the pain stop for a couple of weeks.

Anyhow, all of that is why I’ve been so very quiet lately. I’m having trouble making it to my classes (which meet for a total of about 8 hours a week), so things like blogging have been a little extraneous. Not to mention, it takes more brainpower for me to blog than it does for me to do more frivolous stuff like muck about on forums. I don’t know how ‘back’ I am yet, but I am trying!

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