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I hate double-posting from Facebook, but some folks don’t go there.

I started taking Topamax and Zanaflex on Tuesday night, and the Zanaflex does well to help me sleep for a few hours a night, but my bladder (more on that in a bit) and Sophie (in her usual manner) keep me from sleeping well.

The Topamax has been an adventure.

First it just made me a bit nervous. Then it made my lips tingly. Then it removed my appetite. Then my appetite kind of came back. Then my appetite left again. Then I started getting kind of dizzy. Then I started feeling faint easily. I don’t plan on taking it tonight or tomorrow, and am calling the neurologist as soon as possible tomorrow to discuss it, because, well, fuck that.

(I checked – both Zanaflex AND Topamax have this in the “call your doctor immediately” category, soooo…either way, WELP.)

I’ve also lost 8 pounds since Tuesday. It’s mostly water weight, because Topamax is a diuretic, and I’ve been drinking at least 72oz of water every day…and my bladder has been…active.

am thirsty, but I also have to drink the water, because Topamax is also known for causing kidney stones, so yay.

 

My barrage of neuro tests starts next Monday (the 8th) with the EEG first thing, then the MRI, corotid ultrasound, and MRA in the afternoon.

 

Wheeeeeee.

An almost terrible thought, but I’m not even a little bit sorry.

I’m on Topamax to manage migraines, per my neurologist.

I’ve been on it before, back in 2007 (in fact, I mentioned it when giving an inmate shit for claiming he was too fat to execute. Wow, I forgot how ruthless I can be), and the main side effect I remembered was that it made my face all tingly.

I’m feeling that, and some nervousness, and I was also instructed to drink lots of water, because apparently it’s really hard on your kidneys. Since the other meds I’m on are also hard on my kidneys, I’m drinking a ton of water.

Since I hadn’t heard of the kidney thing the last time I took it, I looked up the side effects on rxlist, and saw that weight loss was the highest-reported side effect for folks who were on my dosage in a double-blind study.

The reason: Topamax kills your appetite.

Now, I have to eat food to take my medicine. That’s unavoidable. And I have to eat to live. And I also just enjoy food. I like how it tastes. I have no intention of starving myself.

However, if Topamax makes me occasionally feel like a bite or two of something is enough, I’m SO OKAY WITH THAT.

Why is that kind of a terrible thought?

Because, well, eating disorders. They’re not great.

But I’ve gained weight since my hysterectomy, I’m starting to look unhealthy, and part of it is because my nausea has me eating as much as I can when I can, because I’m not sure how much I’m going to keep down…so when I DO keep meals down, there’s too much food in there.

So yeah, I’m pretty damned excited about a medication that might make me feel a little nervous, and might make my face a bit more numb, but also keeps me from pigging out…and that’s just a bonus to the original purpose of hopefully getting rid of my migraines.

Yes, I did just write an entire blog entry because I’m excited about a new medication possibly causing me to lose weight.

You’ll live.

Neurologist appointment went well in an unexpected way.

I can’t type very fast, so I’m going to say what I can as briefly as I can.

I finally went to a neurologist, today. I got a recommendation from my LLMD, had an appointment, blahblahblah, filled out a ton of paperwork, etc., and finally went back to see him.

The first thing he does is say, in the most convoluted way possible, that he gives zero fucks about Lyme, because he’s not an infectious disease doctor. He then encourages me to see an IDMD as soon as I can so that I can confirm or deny Lyme…even though I’ve had positive tests. But whatever. I’m there for nerve stuff, so he and I are in agreement on that being his primary concern.

He gave me the usual battery of tests – push up, push down, squeeze his hand, stand up, sit down, etc.

Then he poked me really hard on either side of my skull, just at the base in the back. It hurt quite a bit, and I said as much.

Then he told me to walk over to the exam table, and while I was walking, he grabbed my arm and then poked me really hard on my hip…then he did the other side. It hurt so badly I actually started crying.

He came to the conclusion that the pain in the back of my head/neck is from stress (durrr), and that my outer hip pain is from bursitis (??). The former we’re going to work on with exercises, and I’m also going to be on migraine treatment, and the latter caused him to recommend a nerve block with cortisone. It was basically either that or an MRI of my pelvic region, and I figured a shot couldn’t hurt.

He gave me the test for inner-ear calcium deposits, and it was negative, but I did get dizzy.

I’m switching off of some meds, trying some new ones, and going back next week for an EEG (the seizure test…not looking forward to that one) and an MRI (to check for abnormalities), and then the following week I’m having an EMG (nerve conduction study – the pins-in-the-legs test).

Now, here’s where things are interesting: He brought a nurse in to help with the nerve block pressed on my hip again to ascertain where the pain was the worst, and then did the injections. They hurt like a bitch. My legs felt really weird.

Then he did a battery of tests to check the immediate response, and I found I could cross my legs without my hips hurting. That was kind of exciting, but then I put both feet on the floor, and immediately started crying.

I could feel my feet for the first time in over a decade.

There was no tingling, and only a bit of muscle pain. I could feel the texture of my socks, the carpet under them when I slipped my shoes off, and I could feel the flex when I moved my foot around. It was so amazing.

It only lasted about 15 minutes (back to being numb, again), but it gave me hope.

 

If most of my issues are a TREATABLE neurological condition, then I will get better.

The tests in the next couple of weeks are supposed to help with that end, though.

 

I have hope. It’s important. I am not looking forward to the tests, but I need them. I want them. I want an answer, even if the answer is, “well, it’s not THAT…”

 

So hooray for doctors doing some good!

An entry that’s not Lyme-related. Y’all must be excited.

I’m going to talk about Ferguson, MO, for a second.

Don’t worry, I’ll be quick.

First they came for the Communists,

and I didn’t speak up,

because I wasn’t a Communist.

Then they came for the Jews,

and I didn’t speak up,

because I wasn’t a Jew.

Then they came for the Catholics,

and I didn’t speak up,

because I was a Protestant.

Then they came for me,

and by that time there was no one

left to speak up for me.

Keep that in mind, no matter who you’re blaming for this.

 

Impressive.

I’ve only been on antibiotics for a week and a half, and I already have a sinus infection.

Last time, I think it took quite a bit longer for that sort of thing to occur.

In addition, my side effect symptoms have been as follows (differing severity each day):

  • dizziness
  • joint pain
  • cough
  • headache
  • weakness
  • nausea/vomiting
  • decreased stamina
  • air hunger
  • thrush (hooooray)

So I’d say it’s a safe bet this was necessary, as much as it sucks to have that confirmation (if I didn’t have any side effects, it would mean the antibiotics had nothing to attack, meaning my Lyme wasn’t really back, my body was just being stupid).

I’m somewhere between “okay yay i guess” and “uuuugh” about it, but it is what it is.

Seriously, though, I kind of want to have my sinuses tapped to see what, exactly, is up there.

 

The beautiful disaster that I can’t write about for work.

Before I begin this epic adventure in writing, I want to point out a few things:

  1. Without follow-up from any of the involved parties, this falls under the umbrella of “speculation.”
  2. Because there are details that were added to try to “legitimize” the claim, some of the folks named in this may not actually be involved – their name is just an unfortunate side-effect of the scam.
  3. I find this hysterical, so I’m writing it as a funny story.
  4. I knew this was a scam before I was going to write it for work, but thought it would be a hilarious editorial on the lengths people go for publicity, which is why I researched it.
  5. If ANYONE who’s named in this post contacts me to have their name removed, I’ll do it. Otherwise, at least first names will be used, with last initials.
  6. You may know where I work, but I’m not naming it here, so that if people search for our site, this doesn’t pop up.

Okay, now that that’s out of the way…

We get a lot of weird emails. People don’t know how to market themselves, so they go to some pretty severe lengths to stand out so we’ll write about them. We get form letters that are signed incorrectly (or addressed incorrectly – they forget to change the salutation to our editor’s name), language that’s completely inappropriate for a business email (for shock value, of course), and game assets that may not even be from the game they’re trying to market. Anything to catch our eye, then they can worry about what kind of press they get, if they’re worried at all. Think of all the awful Kickstarters out there, and just turn them into emails. That’s what it’s like, sometimes.

On Monday, I woke up feeling like a mountain of poo, opened my laptop, and proceeded to check my email and Skype for work stuff. I saw a message in the work chat that said:

Someone just sent me an email about a game they think is hyponitizing [sic] chidren [sic] into an “erotic state of mind”. I… guess someone should look into this?

Well, naturally, I jumped on board. I mean, this is GOLD – someone claiming that a game does something really weird to their kids is a tale as old as time, but claiming EROTICISM from a game made for children? Who wouldn’t want to research that?

I got the email forwarded to me, and it turns out it was forwarded to my editor by someone claiming to be a freelance tech journalist. His introduction was hinky as all hell, but that just made me want to research him more (emphasis mine):

As a freelance journalist I receive weird press releases, but the message below tops it all. I tested the game and I have to admit I felt a bit drowsy after only ten minutes of playing. This concerned father seems to have a point and I urge you to publish something about it. Please leave my name out of the publication because I seldom take sides.

It sure sounds like you took a side to me, buddy.

The first thing I did was research the “journalist” who forwarded the email. I wanted to know if he existed, and if there was another way to contact him (I had an email address that’s his last name with three 9’s after it, which generally means it’s a throwaway email address; I also had a phone number conveniently located in another country). He claimed his name was Paul F.

Thanks to my early days of blogging, where I learned some Google-fu, I did a reverse-search on Paul F.’s phone number. It took me to a Whois page associated with, yes, a tech blog located in England. I searched for his name on the site, and came up with nothing. If he provided this phone number, he must have contributed an article or two, right? Nope – nothing. Nada. There’s not even a person related to technical writing of any sort in England, according to additional searches of his name on LinkedIn and other business-networking sites.

I looked again at the Whois, because there was an address, and realized that the phone number belonged to someone else. It’s a personal number that someone didn’t bother to hide, which is unfortunate for them, because this Paul F. imposter likely stole it to use because it was convenient. It’s not like the tech website was a big one, so I suppose this person figured they wouldn’t get caught. As “Paul F.” claimed to be a freelance writer, he would have included HIS personal number, not the number for a company (or just the site’s owner) that he’s never written for, yeah?

Note that this guy's name is Ian. Not Paul.

Note that this guy’s name is Ian. Not Paul.

After that, I was starting to really have fun – every new link made me laugh, and I was emailing my editor like “CHECK THIS SHIT OUT,” every few minutes.

Then it was time to look up the “concerned father.” Here’s the email excerpt you’ve been waiting for, folks…this is comedy gold (all formatting kept from original email):

Alert against hypnotic game!

Dear Press,

My name is Roy H[redacted] and I am a very concerned father. My daughter has come in contact with a dangerous game that uses hypnotic elements to get its players in some sort of hypnotic trance. During this trance players are persuaded towards an erotic state of mind. Which is sick when you think of the fact that my daughter is nine years old and a Squirrel game appeals mainly to children. After hours of playing my daughter clearly showed the signs of mental absence that I’d normally associate with the use of illegal substances.

Please help me alert other parents to the dangers their children might face playing apps. Especially the app named “[redacted]” developed by “[redacted]” has opened my eyes towards a more vigilant approach to the gaming habits of my children. Maybe other parents can confirm my story about the trance-like-state they might have found their children in after playing hypnotic games.

For any more info, please feel free to e-mail me. I did some research on the game, you can find it here:

Website:  [redacted]

Itunes link:  [redacted]

Android link:  [redacted]

My personal e-mail:

[redacted, but trust me when I say it’s just as generic as the “journalist”‘s was]

So what we have here is a carefully-constructed email with strange details, but even stranger are the blatant advertisements at the bottom. How about no? Is no good for you?

This guy claims to be very disturbed that a game involving a squirrel would cause erotic trances in children, but he’s the one who called it erotic. If he exists, he sexualized his own child. That’s sick. And over a SQUIRREL. Either Daddy is a furry/yiffy, or he’s an idiot.

I tried to search for him, but there are too many people with his name that have very little detail in their information. So I decided to email him to see if he could give me more information about what else the daughter did in her supposed “trance.” Did she move around at all? Has this happened with any other form of visual entertainment, like television, a movie theater, or other video games? Is she epileptic? These are all valid questions, and I worded them in the “I’m here to help” format so that I could potentially get him to, well, let’s face it, say something stupid, because it’s great press.

(Yes, I enjoyed the hell out of this. It made my day.)

I visited the links for the game (the website is really well-done, and looks standard for mobile apps/games), and found the link to the developer’s website through the Google Play store’s app. This is where things get REALLY stupid.

The top of the webpage for the app? Is in German. (I blacked out the company name, even though it’s fucking hilarious):

"Worldwide, there are 4.5 billion smartphone users. We achieve them."

“Worldwide, there are 4.5 billion smartphone users.
We achieve them.”

So I think, “Oh, they’re foreign, maybe the dad (if he exists) is just xenophobic.”

Then I scrolled down:

THIS IS A GIFT, I TELL YOU. A GIFT!

THIS IS A GIFT, I TELL YOU.
A GIFT! (click to embiggenate)

LOREM IPSUM. IT’S ALL IN LOREM IPSUM. With multiple quotes by John Doe.

And that video – if you can’t read that description (which, you should if you click the pic), that eagle eats its young in a horrific way, and they continue screeching in its belly because it swallowed them whole after they wouldn’t shut up. IT’S THE MOST RANDOM VIDEO I’VE EVER SEEN. And it has NOTHING to do with the developers, the game, or anything, as far as I can tell.

It’s just…there.

The rest of the website is the same, with various starting points of the lorem ipsum test language put in odd places, saying nothing at all, just existing on the web. You know, as you do.

So at this point I was taking frequent bathroom breaks because I was laughing so hard.

I emailed the developers using the email address I found on the iTunes store page, asking them if they’d heard of these allegations and what they thought of them. Unsurprisingly, I didn’t hear back from them.

Hence this blog post.

So what’s my theory?

This game, according to the Twitter account associated with it, released in April. The activity on the app pages is…low. There are several obviously-fake reviews, in fact, on the Google Play store:

The highlighted reviews are, I'm pretty sure, the only real ones.

The highlighted reviews are, I’m pretty sure, the only real ones.

The Twitter account is pretty barren, the Facebook only has 7 “likes,” and prospects look really dismal.

So it seems that someone decided a scandal was just what they needed to boost attention, since marketing their game as “cute” and “fun” wasn’t working. They fabricated a couple of names, wrote a dumb email, got throwaway email addresses, stole some guy’s phone number to make it look legit, and then chose a titillating topic to get the web abuzz about their app.

Why they went with pedophilia, the world may never know.

 

And thus ends the story of the best day I’ve had at work, thus far.

I thought today was Tuesday…

My morning has been…different.

I woke up early (around 5am) because my stomach was doing that “FEED ME, SEYMOUR” thing where it growls and hurts, but, with it being 5am, I wanted to sleep. I finally got about another hour of sleep, interspersed with Sophie crawling on my face (for some reason, she thinks that’s the fastest way to get anywhere), and Forrest’s alarm.

I checked my email for responses to my queries for work (the “concerned father” article, for those of you on FB), saw nothing (this means I basically get to speculate and write whatever I want, so I’m okay with it) and decided to try to make something to eat, as my stomach had calmed down a bit, but I was feeling lightheaded.

I began to make my standard omelette, which consists of quite a number of spices in the egg, and cheese inside/on top. It’s easy, it’s quick, and it gives me a good amount of protein.

The omelette broke, because the pan wasn’t hot enough to keep the egg from sticking, but I was able to salvage it, since it’d be folded, anyway.

I reached into the cheese drawer, pulled out a bag of colby-jack, opened it, and sprinkled a generous portion over the omelette in the pan.

That’s when I noticed the smell.

It reminded me of a room full of sweaty feet (when you’re in marching band, you can place that smell really quickly).

I looked at the bag, and noticed the date on it. June. There was no visible mold, but that cheese was GONE.

Gagging, I threw it all away, sprayed a generous portion of air freshener around the kitchen, and decided that destroyed eggs would be better. Thankfully, this endeavor proved more fruitful.

I get back to my room, and immediately spill hot coffee on my crotch.

Then my breakfast came back up.

 

*sigh*

 

It’s not even noon. Can I get a do-over?

Sorry, about to get a bit tetchy.

I think I’m allowed to get a bit angry at the state of things, right now.

I felt like shit in May, but was pronounced cured via a broken test that my doctor KNEW was broken, but because of lobbying (hooray, money makes the world go round), he has to follow that broken test. THANKS, CDC.

I continued to feel like shit after May, getting to the point where my stamina DECREASED as I moved around more and was off medication.

My nerve pain got worse.

I got that stupid infection in my jaw.

Those fucking migraines.

The vertigo.

I couldn’t do shit but lay in bed, and it was fucking miserable. It IS fucking miserable.

And now?

I get to do it ALL OVER AGAIN, except MORE aggressive, because WHOOPS, I wasn’t cured, after all!

So now, in addition, I get to have anorexia due to the side effects of the medication. I don’t want to eat. I don’t want food. BUT. I get dizzy if I don’t eat. I need food to take my meds.

BUT when I eat, I either puke or I get to visit the bathroom a million times afterward.

I’m now finding myself eating as quickly as possible, to the point of TOO MUCH FOOD, just to desperately make something stick. Sometimes it does. Other times, it makes the nausea come on more quickly, and then there’s my medication wasted, as well. Sometimes I can still see the pills in the toilet, it’s that quick a reaction.

And yeah, people who have cancer deal with this shit. Don’t tell me to compare my situation to anyone else’s, please.

Because it’s MY situation, and it’s NOT cancer, it’s a fucking bacterial infection gone horribly wrong, and it shouldn’t be this fucking dramatic!

It just shouldn’t!

But it is, and it is because of things I have no control over – things like the aforementioned lobbying, things like disbelief and misinformation, things like the “at least it’s not cancer” comments.

Lyme support groups are literally a “who’s the most miserable” competition, and it’s stiff, because every single one of us is likely having the worst day of our lives, at that moment. You learn to console others without comparing yourselves to them, and hope that they don’t compare themselves to you. You learn to comfort without being patronizing. You learn the different variations that this horrible disease takes, and what it can do to people who might have had a very full and wonderful life.

I learned today that a friend who was treated for her Lyme early is still having horrible side effects, and now has a muscular problem that will be with her for the rest of her life. She’s one of the most active and positive people I know (truly positive – she’s a light, truly), and it hurts me hearing about her issues, because she doesn’t deserve this. Not now, not ever. And yet, here we are, praying for her in the long road ahead.

And what am I doing? Sitting in my room, day after day, unable to drive, sometimes unable to do my job, but plugging away at things as I can, because it’s what I’ve got. I have a man who’d do almost anything for me, and he’s stressed beyond belief, and I know I’m an indirect cause because of the financial difficulties we’re facing.

I HATE FEELING USELESS. And as of yet, I’m not being paid more than a stipend for an article or two in the monthly print magazine (shameless plug: you can purchase it in the sidebar, and that will help facilitate the payment process for us for work that’s on the website, as well), and that’s enough for 1/5 of my major monthly expense at the moment (my storage unit, which I’m desperately trying to empty ASAP).

One thing that’s simultaneously helping while also testing my “pressure patience’ (i.e. my “o god pressure whyyy no pls”) is that I’m still getting offered good assignments. Reviews of hardware, which I adore (though this one I will have to send back after a set period of time, booo), given the chance to give an interview with a developer and friend I admire, and given an easy-peasy magazine piece for a mobile game.

The sooner I get paid or this beyond the stipends for the mag stuff, the better I’ll feel. I’ll feel less of a waste of space and resources.

And I apparently still need to appeal for disability, because this new round of meds has amassed side effects, already, that rival anything previously experienced with fibro. I have a feeling this round is going to kick the shit out of more of my mental faculties, as well as my nervous system…and possibly my muscle groups, and that is TERRIFYING.

So yeah, I’m angry.

I am not without hope, but it’s a tiny little light, like one of those tiny Christmas lights, just sitting on its own, flitting around like a firefly so that it’s not always in sight.

And I just want it to stop.

I want everything to stop so I can get my bearings and figure out what the hell I’m supposed to do, and I can’t even do that, because I’m not getting a break. I may never have a break, again.

I have to come to terms with that, but after the past 3 months of, “well, I have some permanent damage, but NO MORE LYME YAY!”, it’s a bit more difficult to stay motivated.

 

(if it’s any consolation for you worriers, I have no intentions of hurting myself. In light of the recent news of Robin Williams’ suicide, I know tensions are high on the topic, and I don’t want to alarm anyone into thinking I have any plans.)

 

I’m just so goddamned tired of fighting. I just want a break.

Just a break.

I really want to express myself…

…but I’m never sure how angry I can get at my situation before people start acting like I shouldn’t be angry.

And I’m really angry about my situation, for a number of reasons, some of which I haven’t shared, because they’re not exactly tied into anything that’s relevant to anyone else.

But again – how much bitching is too much?

I already don’t share a lot of my life other than Lyme on here, because…nothing is happening in my life aside from that, really.

 

So I never really know what to say when I really need a good whinge.

And I kind of need one, right now.

 

But I also unfortunately need to try to eat something so I can take my meds and go to bed.

So we’ll see how that goes.

Yesterday was pretty neat!

My dad picked me up, and we went to get sushi (well, I got sushi…he got some combination plate with teriaki chicken, seafood, veggies, and rice). I actually got him to try a piece of my tempura shrimp roll. He pronounced it “okay.”

After that, we had freakin’ 3.5 hours to kill before the movie, so we went to Target, Best Buy and Sports Authority, where I got a few items with birthday money (it was basically insisted that I spend it on fun stuff – but I got practical items, because I have an aversion to fun, apparently), and killed my feet.

I was leaning on a cart the whole time I was at Target, but I didn’t have that luxury at Best Buy or Sports Authority, so yeah, my dogs are barking, today.

Oh, I got this gum called Quench? And it’s HORRIBLE. I stuck a piece in my mouth and had instant buyer’s remorse. Be warned, it’s one minute of citric acid making your life terrible, another minute of some sort of attempt at a fruit flavor, and then it dies faster than Juicy Fruit.

After all that, we headed to the theater and got our tickets – and it’s a good thing we got them when we did, because the theater was packed!

No, I didn’t see Guardians of the Galaxy – I don’t like seeing big action movies in theaters – they give me a headache.

We saw Boyhood.

It’s really freakin’ good.

And the theater was epic – huge, cushy, leather seats with these double-wide armrests, and it was actually cold in there (how I like it – I always bring a sweater like an old lady, but I feel cozy), and there was enough room in the seat for me to pull my legs up and just curl up, like I was at home.

Then I came home and found out that my laptop AND desktop are both vehemently refusing to show me my own damned charity stream. But if you’d like to check it out, it’s going through tomorrow night at midnight, and it’s for The Trevor Project (aka “It Gets Better”): http://hitbox.tv/wolfpackgaming

And with that, I’m going to try to rest before my body realizes I’m not in the bathroom.