Goodnight, Buddy-boy

I found out last week that one of my parents’ dogs passed a while ago.  Rest in peace, little friend.

My parents got Buddy about 8 years ago.  He was a shelter rescue.  When we got him, he had an appallingly bad haircut – someone at the shelter just chopped off a great deal of his fur, including cutting into his tail-plumes.  It was clear that even when his hair grew back out properly, he’d be a homely beast.  Buddy was part cockerspaniel, part whodoneit.  (If that didn’t make sense, try this – who done it?)  The shelter told us he was 4-6 years old, but we figured he was more like 6-8 years old.  He was overweight and out of shape, and probably had mild asthma.  He also had seizures, which scared both Buddy and my parents’ other dog, Cody.

Buddy was chosen because the then-8 month old puppy, Cody, was annoying the pants off everyone and destroying things.  We couldn’t exercise him enouth to tire him out – Cody was tireless and always wanted to play, all the time.  It was clear that Cody couldn’t be left alone, and we hoped that by bringing another dog into the house, we could give him a way to work off his energy without chewing on everything.

Cody was always the favorite.  Buddy wasn’t as cute, wasn’t as smart, and wasn’t as good with people.  He smelled a little funky even when he was getting regular baths, and had gas that could clear a room.  Buddy’s behavior made it clear that his former family had been both loving and abusive.  He cringed any time someone reached for him, but if you sat on the ground he’d try to sit in your lap.  Buddy was definitely the low man on the totem pole socially; Cody is a bit of a bully, and Buddy mostly let him rule the roost.  Buddy occasionally snapped when Cody was being too much of a jerk, and he got back at Cody by stealing toys and taking them outside where they would get lost and wouldn’t be thrown for Cody to retrieve.  Despite all the things Cody did to reinforce his alpha status (and any serious dog lover will tell you that alphas are jerks to other dogs), Buddy loved him so much that when they had to overnight at the vet hospital and were in separate cages, Buddy cut his nose trying to get to Cody.  (Cody, on the other hand, only showed distress at being separated from Buddy if Buddy was taken somewhere and Cody was left at home.  That is to say, Cody was jealous, not missing Buddy)  My sister, well, she’s the shallow one in the family, and his looks and odor were enough to make her not like him at all.

But Buddy was a good dog in all the ways a dog can be good.  He tried to do what he was told.  He loved his people (though strangers stressed him out).  He never jumped on people and rarely stole food, even when it was left in easy reach.  If you started petting his belly, he would relax on his back, legs sprawled wide.  If you stopped, he would start sneezing and wriggling to get your attention again.  He would come over to you and lightly push his nose and then the rest of his head under your palm, hoping you would pet him.  If you sat, he would come and lean against your feet.  He would follow you out into the ocean past where he could reach because he wanted to be near you.  When we first got him, and he was overweight and out of shape, he would gamely try to keep up on walks even though he was having trouble breathing.  He would crawl into your lap and tremble during heavy thunderstorms.  He would sit at attention in front of you, head tipped back so he could see you, ears flopped open (which earned him the nickname ‘batdog).  He was kind and sweet and loved to cuddle.  He recognized the goodness in my boyfriend; they spent much of their time together every time I brought my boyfriend back to visit my family.

In his last few months, it was clear that some kind of decline was going on.  He would wander aimlessly for about an hour at a time, circling around the parts of my parents’ house that are open to the dogs, even going out into rooms that are typically forbidden to them if the gate wasn’t closed well.  You could stop him, but he’d just start up again, moving around as if he was looking for something but going around the same places five times, ten, fifteen, before he finally could lie down.  At the very end, his hind legs collapsed and he couldn’t walk; my parents gave him several days to recover, but it was clear that he was in pain.  They took him to the vet and had him put to sleep.  By our estimates, he lived somewhere between 14 and 16 years.  8 of those years were with us, and I like to think they were good years – years of people who petted him and loved him, two meals a day, daily walks, a dog companion, soft beds, cool tile to lay on in the summer and a thick pillow to cushion his old bones from the floor when it wasn’t so hot.

Rest well, Buddy.  You’ve earned it.  Good dog.

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They almost look like fingers again!

One week on the new anti-inflammatory and my hands are starting to look like my hands again.  (I was going to say they were starting to look like normal hands again, but my hands are built so slim that they probably looked more normal when they were swollen!)

Thankfully the pain is down significantly in my joints.  My feet still start whining if I stand on them for more than a minute or two and my hands are quite displeased with how long I was typing this evening, but on the whole I am feeling better.  My hip is now spending more time settled properly than it is subluxed, and my knees only feel like someone took a baseball bat to them when I go up or down stairs.

It’s a real relief.  It doesn’t make all the maybes about what’s going on feel any better, but anyone who has lived with significant pain will tell you that being in severe pain that isn’t stopping is really terrible for your morale, especially when you don’t know why you hurt.  Either part – the uncertainty or the pain – is one hell of a lot easier without the other.  I wouldn’t say I’m optimistic at this point, but it would be fair to say I’m not feeling quite so glass-half-empty.

It’s not half full, it’s not half empty.  Right now, my glass is just…half.

I can live with that.

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

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

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

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

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

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

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

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

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

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Anybody interested?

Every spring, my service dog organization does a ‘dogs day off’ fundraiser.  Unfortunately, I’m really not up for it right now – I’m in too much pain, and too sick.  So I was thinking about it, and I had an idea for a fundraiser of my own, but I wasn’t sure if there would be much interest.

So here’s what I’m offering: for a $5 donation, you would get a picture of Hudson that no one but me has ever seen.  It could be him working, performing a service task, just chilling, at dog park,  at the lake or the beach.  For a $10 donation, you can specify what kind of picture you like – even a pose you want (or at least, I’ll TRY for requested poses).  No one else would get the picture you get.  It’d be a special thing just for you.

Would anyone be interested in that?  If I could sell 200 of the ‘basic’ pictures or 100 of the requested pictures, or some mix of the two that totaled $1,000, we could sponsor a puppy and name it!  If we get that far, the boyfriend and I have a list of names and everyone who donated, even if they didn’t donate enough to get a picture, would get to vote on the names.  The names, for reference, range from tremendously silly to respectable, most of them nicknames I used at one point or another for my dear Hudson.

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Full-on Whimper Mode

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

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

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

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

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Pain attack

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

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

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

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

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

~Kali

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