No Spontaneous Combustion Here (I like to plan too much for that).

April 19th, 2013

(Sorry for any temporary technical issues in accessing the site.  We’ve gone rogue, cut free from the hosting company I’d been using, and hopefully giving us the freedom to fix whatever was making things so ultra slow sometimes (that’s what I get for choosing partly based on who had the most amusing company name, I guess).  As much as it was potentially fitting for my site to have the same kinds of energy issues I do, I’m pretty sure nobody wants to deal with that any more than they absolutely have to.  Anyway, everything should be a-okay now.  Thanks for your patience.  Let me know if there are any lingering issues we’ve missed that need resolving.)

(Besides the emotional kind.  I’m aware of those.  Mostly.)

Cat Scratch No Fever Whatsoever

April 9th, 2013

As I type this, my cat is lying pressed up against the side of my head like a giant Princess Leia bun gone wrong.  I have no idea how I might ever have contracted a bacterial infection that lives in felines.  Really.

I’m due to fill you in on what happened with the Cat Scratch Fever, etc. Have finished the antibiotics now, but have been feeling too crappy to update here.

Or maybe that’s an update in itself.

I did, however, have one heck of a Herx reaction, so clearly the antibiotics did something (they also gave me a bad case of diarrhea, some intestinal burning, and a yeast infection, but I won’t write that.  Because who puts “yeast infection” on the internet?  Not me).  So we’re now in the “hope that alleviated some of the burden on my overtaxed immune system” camp, and crossing our fingers that my overall improvement speeds up just a little from what it was before.

I came out of the antibiotics and pretty much right into a mild crash (phone call that went unexpectedly long), so I can report with some confidence that I’m still stuck with the swollen glands and ill feelings and burning head and stuff that we were hoping might have been more of a Cat Scratch Fever thing.   So all in all, I haven’t yet noticed any antibiotic-related change outside of a couple days of feeling like death and a couple weeks of feeling extra crappy.  But it does feel good to know those little buggers are out of my circulatory system.  I certainly didn’t need that on top of everything else. So I’m celebrating, even if the effects are impressively subtle thus far.

Who needs the lottery anyway.  I’d probably just become the obnoxious nouveau riche of the health world, spending my energy on showy things and crass displays of fitness.

In somewhat other news, we’ve been told that cats are generally only contagious for about 30 days before their immune systems give the bacteria the boot, and my only exposure to fleas or newly-acquired kittens is either 3 or 6 years ago.  Definitely not in the last two years at least.  Having a fleet of soft, purring kittens deposited on my chest while bed ridden has always sounded like a fantastic road to rehabilitation, but so far nobody’s taken me up on that.  So my exposure has been somewhat limited.  …Which means I really have had this infection for the last 2 – 6 years at least.  Ack. We may need to confirm in a while that it’s actually gone.  Apparently for some lucky folks, it can come back for another pass or twelve.

And I am impressively lucky with those kinds of things.

I once read a whole TV remote instruction manual in a sexy voice. That time was intentional, though. …Probably best not to ask.

March 21st, 2013

So we’ve determined that I have an Inappropriate Sexy Voice that manifests completely unintentionally on rare occasions, when I’m trying to say totally mundane things. Breathless, sultry, loaded with promise, and COMPLETELY OUT OF PLACE FOR THE SITUATION. My inner vixendom apparently cannot be contained. Also, it may be a good thing that no one’s ever asked me to give a eulogy.

This afternoon, my husband briefly emerged from the home office, where he slaves away during the days. I got up from the couch for a drive by hug on my way down the hall (because I’m all about efficiency).

Husband: Mmmm… Don’t squeeze too hard, though. I really just came out here to use the bathroom.

Me: Damn. I was about to use the bathroom.

Husband: It’s okay. You can use it first. Just turn on the fan if you’re going to poop.

Me: *completely unintentional over-the-top sexy voice* …I will.

The confused horror was probably to be expected, really. He seemed to feel that bathroom activities and sexy time should never fraternize that closely in this house. I told him that I cannot control Inappropriate Sexy Voice. It has a mind of its own. Sometimes there’s lingerie involved, sometimes we’re talking about infrastructure reform. It’s the burden we have to bear.

Some things just cannot be explained.

Dubious claims to fame

March 19th, 2013

Now and then I still collect amusing search terms used to get here, because I find them hilarious, and someday when I’m feeling well enough to put together that type of post I’ll be tickled to be pleasantly drowning in absurd search phrases to choose from.

A term on today’s list caught my eye, and when I went to add it to my stash, I realized it was already there. In fact, this seems to have shown up multiple times.

Now, there have been a few times in the past when I have ended up as one of the top search results for some really weird things. So this is the part where I begin to wonder, and head to Google with a good-natured cringe ready in reserve, but still thinking that I’m probably being silly to even check. Because in the whole of the internet, surely there are other pages out there for people looking for this type of thing. Surely that term popped up on my search hits from one or two very persistent searchers, trolling through the tenth or eleventh page of their Google results. But I pop the phrase into the search bar anyway, just to confirm (and to make any FBI investigations into my search history that much more interesting).

And of course, my first intuition was correct, and I had to shake my head and laugh at myself.

Yup. In all of the internet, in all of the world, the very first page result you’ll get if you’re looking for “fuzzy bondage”? Yep. That’s me. :)

(Even better, the post in question is a really lame, washed out, sort of depressing one from when I was still deep in the throws of medication-induced depression. Somehow I’m thinking that’s not what those searchers were looking for…)

I’m pretty sure only one of those would notice it’s pi day today

March 14th, 2013

We got a bar fridge for beside the couch! Which, I believe, means that I am now either officially disabled or an alcoholic. Probably the former, since mine is mostly filled with coconut water and probiotics, and I’m pretty sure that makes one heck of a nasty-ass cocktail.

No offense intended to perfectly normal people with perfectly normal bar fridges next to their perfectly normal sofas. I’m sure there was a very good reason for that.

At any rate, it’s a nice sleek black and chrome model rather than the old school plasticy white that I was expecting. Nice. I know details may not be particularly thrilling for you, but hey, this is the most excitement I’ve had in ages. Plus, I haven’t had a significant piece of machinery just for me since the day we sold my car. I may occasionally slip in there and make soft vrooming noises.

(It’s got great A/C. Probably should have sprung for the leather interior, though.)

…Do they make fridges with leather interiors? Now I’m thinking they probably do, somewhere. For just that special kind of individual.

Anyway, this should make it a little easier on us when my husband has to be away for the day and the walk to the fridge isn’t treating me so well. And it’ll let me have access to my own juice, water, etc. so I don’t have to ask him all the time or leave it out at room temperature for more hours than I probably want to admit. You’d be amazed how important those little scraps of independence can be.

Plus, I got to watch my husband moving heavy objects. Which is worth it in its own way. Though I made sure to reassure him that I like him for his brains.

…Which makes me either a nerd or a zombie, I think.

Cat Scratch and Win

February 26th, 2013

We’ve been having some fun around here playing the what if game. It’s just like we used to do in regard to winning a major lottery of some kind. What would we spend the money on first? How would our life change? What would we do with our time? How would things be different without financial worries?

Except now we’re having fun thinking about what if I have a raging bacterial infection! It’s kind of like winning the lottery, right? Plus, way more likely, since we never buy tickets for those things so somebody would have to arrive pretty much dying on our doorstep with the winning numbers or something, and use their very last ounce of strength to call a lawyer and will the ticket to me. It could happen. Maybe they’d be dying of a raging bacterial infection. Double win!

Really it’s kind of a lottery win that somebody discovered my infection in the first place. The symptoms are so badly camouflaged under the core ME stuff that I never ever would have had them checked out. It was pure luck that one of my doctors decided to test for a bunch of viruses and infections just in case. He’s known for doing that, but honestly at the time I thought it was probably a waste of blood.

I know it’s probably unlikely that anything major will change for me based on my latest test results, but it’s fun to think about anyway. What if that was the tipping point that’s made me so very sick for so long? What if it was responsible for all my worst symptoms? What if my ME would still be in remission without it? What if my problem was treatable? What if I took antibiotics and was suddenly normal? What if I could work again??

I can’t tell you how exciting it is just to think about being able to work. I’m not even a person who places high importance on work in my life, but it’s just such a…normal…thing. There would be so many possibilities for me.

My husband realized that I would probably need a car again. It’s been so long since I drove anywhere that didn’t even occur to me. Probably something small and cute, but cute in a reliable way rather than a sports car way. It would probably be safer to wait a while before purchasing it in case the excitement and joy of re-entering the real world results in a car painted bright spring green (which it otherwise might).

We would book tickets to Europe, ASAP. The husband mentioned something about “when he was able to take vacation from work.” I recognize the logic of this, but I would be dying to book them right away. Right. Away. Like, let’s leave tomorrow. Thinking that we might have to take travel off of our life list has been really demoralizing over the last couple of years. That’s one of the first things I’m doing if I’m ever well enough. We’d probably hit Paris first. We went there for our honeymoon and totally fell in love with it. Seems fitting as a return destination to celebrate a fresh start at life.

And I would write a book.
And learn a language.
And play my guitar.
And sing my heart out.
All of the things that I’ve been dying to do while I’ve been cooped up here, but couldn’t. I would do every single one.

And we would go visit friends. So many friends.

And go out to dinner. In a restaurant. A really nice one. Where I would sit. Upright. In a chair. And eat regular food.

And we would have adventures. All kinds of adventures. High ropes courses, and museum crawls, and wine tastings, and dance classes, and yoga retreats, and trampoline lessons, and so many memory-making experiences. Those are the things that fill up my spirit. I would soak up every one.

Maybe I need to think about this stuff more often. It tends to go by the wayside now, because a lot of the time really thinking about these things just makes me acutely aware of how much I’m missing. I spend a lot of time really focused on NOT thinking about any of that. It’s part of how I’ve kept myself together.

But it’s fun to have hope. Real hope. Even if it’s only a sliver. My family doctor’s unfortunately on vacation this week, so I’ll see her as soon as she gets back. The specialist who discovered the infection wants me referred to an infectious disease specialist for a more thorough follow-up, so I’m not sure if I’ll get treatment through my GP or wait for the specialist. I’m trying to keep my real expectations reasonable. I hopefully won’t be too disappointed if it turns out the infection was only a negligible piece of what I’ve been feeling, and that treating it doesn’t actually make me feel any better. Heck, at this point I’m half braced for them to tell me that the readings must be mistaken, or that they’re not going to treat it regardless, and have to fight for it. But it sure would be fun to feel like my life could turn around so quickly.

So in the mean time, we’re rooting for a raging bacterial infection in this house. Full, disabling, systemic infection. Please, please. …Maybe I’ll be lucky.

Good Thing He Has a Rebellious Streak

February 22nd, 2013

I’m having some of my mineral levels tested next week, so I’m supposed to avoid my usual mineral-related supplements for a few days in advance so as not to throw off the results too much. Consequently, I plan to skip the lovely, lovely Epsom Salts that normally go into my next scheduled bath.

The minor complication is that I’m not the one who puts them in there anymore. There is a care worker who comes in to help me, and getting the bath ready for me is part of her routine. And my memory for reminding people of things like that is…not so good anymore.

No problem, I think. I’ll just write up a post-it note now while my memory’s fresh, and on my next trip to the bathroom I’ll stick it on the container of Epsom Salts and leave it there for the next couple of days until she arrives. So if I forget to mention, she’ll at least see the note there on the shelf above our toilet and either skip the salts or ask me about it.

Problem solved. No possibility of humour ensuing, right?

…Except that apparently my note did not stay in place as firmly as I might have hoped.

So my poor unsuspecting husband went into the bathroom this morning to use it for its usual purpose, and when he turned to the side to partake of the roll of toilet paper currently in use, found a pink note in my handwriting stuck to it, saying

“None this week, please. Thanks!”

Pass My Silver Jumpsuit

February 19th, 2013

So apparently I almost certainly have Cat Scratch Fever. And apparently my level is off-the-charts high and I may have had it for a really, really long time. It can cause fatigue, headache, sore throat, swollen glands, and such. As my doctor asked me about contact with felines, I asked him what this find meant for me. I was away at school when I had my first crash of what at the time was called “mystery illness” and I now call ME, and at that time I hadn’t been in contact with any cats at all. Did he think this could be responsible for my condition? He sort of laughed and said that, no, I have this in addition to whatever else is wrong with me. Joy.

As a side note, I can’t even type Cat Scratch Fever with a straight face. It sounds like I’ve gone into heat. Or like a dance craze or something. They might as well have told me I had Saturday Night Fever instead.

On the down side, something clearly weird is probably going on with my immune system, given that most people clear this up all on their own within a month or two. On the plus side, the right antibiotics should get rid of the infection with or without my body’s assistance, which could result in some mystery amount of improvement in some of the related symptoms. I’m trying not to get my hopes up too high, but surely carrying around an active bacterial infection for years has got to take a toll, right? Or at least, not carrying around an active bacterial infection has got to feel better. What if they give me antibiotics and suddenly I’m 60% improved?? Or 20% improved? Or the same, except with an intoxicating banana aroma that follows me around?

It’s been a bit of a confidence shaker, though. I’ve often joked that I’ll be totally screwed if any serious health complication ever finds me, because I have so many severe symptoms that I’ve long ago stopped even mentioning them. This seems pretty common with ME patients. At the beginning, I would take my concerns to the doctor, but I’ve discovered that most doctors don’t like investigating symptoms once you pass a certain number. A mystery number. The Crazy Number. So it’s okay to have one, or two, or three debilitating symptoms, but once you reach the Crazy Number, they all just get lumped into one basket and nothing ever gets investigated again.

It would be nice to feel like somebody would look into the major ones, just in case. I’m sure I still might keep the less severe but doubly strange ones to myself. Crazy Number or not, I’m sure some of them would sound a little nuts. Generally I find just about all of my symptoms nuts, and I’m the one living through them. Hours and hours of daily hic-ups for a month straight for no reason, body? Really? Now you’re just trying to mess with me.

Anyway, I have severe mystery ripping pains, and severe nausea, and severe chills, and severe vertigo, and severe you-name-it very frequently. And not in a nice, predictable way where I can get used to what to expect and easily identify anything new. It’s raging night sweats one week and then horrible sudden chest pains the next. I’ve accepted that my body apparently does strange things for a long time now. It’s so common for me to involuntarily cry out in pain in our house that my husband barely even looks up anymore when it happens. We’ve adjusted, and go on with life as we’re able. And none of it even gets mentioned to my doctors.

The point being that every month something happens to me that feels like a crisis easily worthy of the emergency room. And I brush off every one. If ever my appendix burst, or I had a heart attack, or I picked up a touch of leprosy, or my intestines tied themselves into balloon poodles, I would be at home, calmly trying to go on about my business, or waiting in a heap on the floor for it to pass.

Because agony, or nausea, or shaking, or weakness, or chills, or skin that falls off, or bloating in the shape of balloon poodles is a part of my normal life. Plus, really, if I went to the ER for everything that felt worthy of the ER, I’d be there constantly. And I’m sure that the same doctors who would reprimand me for letting such severe symptoms go on without seeking medical treatment would roll their eyes if I came in to tell them about them now.

But finding out I have an ongoing infection is a reminder that other things can still happen to me, and that I will be totally blind to the symptoms of anything that does. It will have the chance to do it’s thing unhindered for ages and ages before anybody notices something wrong.

And that’s a damned unpleasant thing to be reminded of.

Good thing I’m immortal.

[Note: I may not actually be immortal. I think that may have passed after my teenage years. ...But I also no longer wear a walkman. Fair trade.]

[...Not that I wore a walkman, like, all the time or anything. Just at the appropriate moments. I don't want to colour that into your mental picture of my high school years. But still. Any walkman is too much walkman.]

Super Happy Fun Time Flu Extreme

January 30th, 2013

This is very good.  A tad slow leading up to after the two minute mark, but well worth it.  Once he gets into the details of his experience, I think he’s done an excellent job of bringing across some of what it’s like those first months.  I can see so much of my own journey in what he’s said.

I always hesitate a little before any kind of updates on illness-related things, because in addition to seeming potentially…um…less than enthralling…I feel like it always comes with the risk of having people assume that I’m somehow attention-seeking.  And I don’t want that.  But at the same time, 1. there really isn’t a whole lot of excitement to choose from around here these days, and 2. I have a strong drive to share at least pieces of my story and in some tiny way help to spread awareness and understanding about an illness that is so very often misunderstood.  In reality, I probably shouldn’t worry about it since those people are already too distracted by the fact that I’ve just started two sentences with conjunctions.

Apologies for the giant gaps in posting.  There hasn’t been a whole lot of extra energy to spare, and generally when I do pull the laptop over to try to compose a post, my brain offers up something to the effect of “uuuuuuuuuuuunh,”  or occasionally “bees?”  Not a particular fountain of creativity over here.  It’s been a bit of a rough few months here physically, including a lot of testing, car travel to appointments, the aftermath of each of those, and a business trip that my husband couldn’t get out of.  How much does it suck having your husband leave for a two week trip and realizing that you are not at all capable of taking care of yourself for that time, you ask?  A lot.  On the plus side, the experience allowed me to discover a new sliver of pride that I did not know I had left at this point.  On the down side, I ate it.  Nom nom pride.

In more recent news, I have just started Equilibrant, which the ME folks reading will know means that I’m probably feeling like crap right now with start-up effects.  And they’d be right.  But I need to do something more, and immune modulators and antivirals seem like the best shot for me right now given my most prominent symptoms and blood work results, and this one is often prescribed by some of the specialists in the field whose judgement I trust.  Plus, there’s a slim chance that Equilibrant in particular may also do something for the ravening puffer demons that have taken up residence in my gut.  I’m not sure what a puffer demon is exactly, but I suspect it is something like a puffer fish, except larger.  And more ornery.  And made of burning.  Anyway, I am cautiously hopeful about it.

So right now I’m living through the Ultra Flu Extreme (as opposed to the regular Flu Extreme that I normally carry around these days).  The Ultra version doesn’t come with leather seats, but it does have a promising “chills and shaking” package, so that’s something.  My body is known to be pretty sensitive to medications/supplements/foods/existing, so I’ve been started off with just a quarter of a pill, which was most definitely the right call for me since that tiny piece has floored me like a ton of bricks.  I’ve discovered that extreme illness is much like pain in that we tend to forget later just how bad it can get (Bad.  It can get quite bad).  I’m sure those of you who caught the regular flu this year can sympathize with that.  The manufacturer mentions that dosing can begin with one pill and sometimes go up to a maximum of six pills per day.  My quarter pill and I laughed and laughed and laughed together reading that, and then lay back down in a whimpering heap of painful exhaustion from all that laughing.  But the pill still seemed in fairly good spirits about it, particularly when you consider that he was about to be eaten.  I’m currently aiming for a dose of one or maybe two pills in some distant eventual time.

Until then, I’m back to struggling to get up the single step from my living room, sometimes needing to take the wheelchair to get down my hall to the bathroom, and getting that horrible creeping burning agony along my spine and up into my head when I try to read or type things.  Things like final paragraphs on posts one has been slowly plugging away at, made of sentences very much like these.