Squeaky Wheel Seeks Grease

A note on disabilities, and an admission.

Squeaky Wheel — Tue, 18 Jun 2013 04:47:49 +0000

Today, I was treated to what happens when you try to present a different perspective to a group of people who are dead-set on one mindset. (If you were privy to this situation, don’t mention it, please – I’m making this post because what I have to say relates to my condition, and it was brought up by said conversation, not because I wish to continue an argument that is, frankly, unnecessary and unproductive.)

I’m a recent “inductee” to the world of the physically disabled. I’m 29, will be 30 in less than 2 months, so yeah, I’d say I’m a little late on the uptake, here…but I’ll explain later why that’s even relevant.

Due to Lyme and its associated issues, particularly those related to my brain and its nerve-conduction failures because of interference of Lyme bacteria and antibiotics (swelling, basically – they cause swelling), both my speech and my mobility have been affected, not just recently, but for several years.

It’s only recently that it’s been a consistent thing – hence why I say I’m a “recent” inductee.

I have a cane – have had it for a couple of years, and have witnesses to my inability to walk without it at times.

“At times” has turned into “nearly all the time,” and I have acquired a walker, which I’ve had to use on several occasions when not just leg strength, but actual ability to remain upright, have both been compromised. (As an aside, we’re going to put “Lyme”-green streamers on it…if you’re going to be disabled, might as well have a sense of humor, right?)

I’m shopping for a wheelchair, because there’s a very good chance I will have to use it within the next 6 months…all this due to treatment from a tick bite from 16 years ago. My doc has told me he has no idea how long I’ll have to use it.

I spend my nights alternately making jokes about my disability and crying about it. Every night. I cry EVERY NIGHT.

What do I cry about? Let me break it down for you:

When I first wake up in the mornings, I can’t walk. I’ve tried – doesn’t work. I fall down. Sometimes it’s okay, I just wait a bit and hold onto things, and I eventually make it where I need to go. Other times…well, I haven’t pissed my pants, yet, but I think there’s a countdown to that (seeing as how that’s pretty much the first thing I have to do when I wake up).

I have the easiest summer job in the world. I deal with surveys from schools, I edit papers, I open envelopes…I can do everything I need to from downstairs, though I do have to deal with stairs on occasion (this is a converted dorm, so it has no elevator that’s accessible by anyone who isn’t administrative or maintenance), and making it to this job has become enough of a problem that I’ve lost over a week’s pay, so far, due to side effects of my meds, which include vomiting, vertigo, not being able to walk, and even that whole foreign-accent thing that happened (you try communicating with Southerners when your mouth can’t decide how to pronounce a word). Not being able to go? How worthless and ridiculous do you think that makes me feel? Simply the act of getting ready to go to work is like a spin class for someone else, some days. It sucks. They’ve been nice about it, which almost makes it worse, because I feel as though I’m letting them down even more for not being able to just get there (bathed, clothed, etc.), 7 minutes away, without even having to drive. I mean…talk about feeling worthless. When I have to get the wheelchair, I won’t even be able to get into the building without assistance (the ramp, inexplicably, has a step at the door…seriously).

I feel like I’m letting everyone down, frankly, including myself. I shouldn’t be crying all the time, that’s counterproductive! And yet…thinking that makes me cry more. It’s a very frustrating cyckle.

Visiting friends is something I’d very much like to do, but can’t, often due to side effects just coming out of left field.

Something I’ve been struggling with, in various forms, is the fact that for the past several years, I’ve been slowly turning into a physically disabled person. Like, actually disabled, not just “trouble getting around” or “too fat” (which was the case a few years ago) or “just need some painkillers and it’s all good.” Disabled. Unable to walk. Unable to get to things I need. Unable to function in a society that’s meant for able-bodied people and those with appropriate physical appropriations that allow THEM to be essentially able-bodied, as well. My nerves are failing me. I’m scared of a lot of things, but not much has scared me this much in a long time. I’m scared, but prepared. Hence the wheelchair shopping. But the fact that I have to shop at all? Something I never thought I’d have to do…and I’ve been explicitly told by my doctor that this is something I will need to do.

I am DEPRESSED. I’m not sleeping, which is adding to it, and that’s due to a combination of meds and pain. I’m in a lot of pain. It’s not going away any time soon, so I’ll have to adjust, but man…the things that people who’ve been disabled their whole lives are used to (or can at least cope with a lot better), I’m just now experiencing in a big way, and I don’t know how to cope. So I cry…and sometimes I wake up crying, because I’ve gotten almost no sleep, and I know the rest of my day is going to be just that much harder because I haven’t been able to re-fill my spoons.

PEOPLE THINK I’M FAKING. I’m serious – as recently as TODAY, I got someone telling me that I needed to stop trying to garner sympathy for my “fake” disease. ?!?!? They also alluded to the fact that I’ve been getting donations, and suggested that that was the reason I was faking. I have news for y’all – I could fake something more “glamorous” and trendy than Lyme disease, and I could do it easily (I’m a med geek, after all…and maybe that’s why people think I’m faking, but until a few years ago, Lyme disease was a campfire tale, to me). The fact that people are donating is on THEM, not me. I asked for help once, and people took up the cause and are now running with it. I did NOT puppet-master this effort, and I am NOT faking being sick. Wanna see my papers? I have proof. I have more proof than most people have to provide to be treated for cancer.

That’s another thing that makes me cry, and it’s the only one that makes me cry in a good way: people care enough to donate, call, email, send gifts (Thank you, St. Grendel! One of those items was needed, and the other gave me a good laugh, which was much appreciated!), and did I mention CALL? People from the internet are calling me and wishing me well. WTF. That’s not supposed to happen. We’re supposed to only communicate in typing and occasionally come out of hiding to greet each other in-between shooting things. Being worth a phone call in this day and age means a lot – it means someone wants to talk to you right now. Someone wants to talk to me? Someone wants to donate and help me with bills? Someone wants to give me something? I seriously can’t handle that, emotionally. It’s appreciated, but it’s so much that my cup runneth over, and leaks out my eyes. I even got a new computer tower because a group that watches me game wants me to game more. I mean…WHAT?

My disease is one that’s not even recognized as valid by the only organization that matters when it comes to me getting the help I really need: the CDC. I admit to being a drama queen about some things, but I wouldn’t go so far to pretend I had something that was, at best, curable immediately, and at worst, only curable by sticking an IV directly into your heart (which, yes, I will have to figure out how to pay for out of pocket when it comes up, and it’s as expensive as chemotherapy). You can’t even officially cure Lyme – you can just put it in remission. Like cancer. But since it’s bacterial, people assume a few antibiotics will have me back on my feet (literally and figuratively) in no time. Um, that’s not quite how it works, but thanks for your destructive optimism?

The loudest Lymies (folks with Lyme disease) are like the loudest Tea Party affiliates: fucking nuts. I hate being associated with a group that thinks that acupuncture and a special blend of herbs and spices given at a snake-oil clinic (*cough*Sponaugle*cough*) will cure you for the low, low price of $16,000 and a 6-week stay at a place that won’t even tell you the medications they’re giving you (but they’re supplements, which are not FDA-regulated, so it’s allegedly legal, though you won’t find me taking anything given to me without knowing EXACTLY what I’m taking). I mean, holy shit, people, it’s BACTERIAL. Anti-biotic treatment is literally the ONLY way to kill these things before they kill you and die out due to lack of a live host! There are also loud, crazy people who keep saying that Lyme causes HIV, and that everyone who gets vaccinated has syphilis, etc., and these are the ones who WON’T. STOP. ARGUING. They’re so rooted in their crazy (which could very well be medical – Lyme DOES infect the brain, as I’ve unfortunately discovered) that they fixate, and they’re the ones the public sees/hears. Well, nuts to that. That’s why I’m doing my Lyme journal (promise, entries coming up), but in the meantime, these fuckers are making me look crazy right alongside them, and that scares me, because the future of the treatment of chronic Lyme is at a precipice, and THESE are the people with the most “cause” in their minds to write to their reps and present their “research” (usually a bunch of links that are very loosely related to something that might have something to do with Lyme, maybe, in that they’re all about diseases of some sort or another). That scares the ever-loving piss out of me, in the same way it scares me when I find a tick on myself, these days. AGH GET IT AWAY!

There is a small, but very real chance that I will die from this treatment, if my body can’t handle the herxing (kidney or liver failure, or an actual stroke). I am making a will. You don’t know agony until you’ve had to figure out power-of-attorney and what to do if something gets fully screwed and you have to make the DNR decision…as well as who you give that power to…when you’re SUPPOSED to not die, but there’s a chance, and you have to face your own potential mortality. This is the least of my worries, but it’s still a worry.

My malady may be temporary, and I may be old enough that I can explain it to people, have them understand, and know why I can’t do some things. However knowing this doesn’t make it hurt any less…especially when your illness is called into question by someone, or your understanding of something is called “rabble” when you try to verbalize it.

So please understand – I AM PHYSICALLY HANDICAPPED BECAUSE OF A DISEASE. Right now. For the time being.

Don’t treat me as though I don’t know what it’s all about, what the frustrations are, etc. I’m experiencing them right now. And, for the record, no, I’m not comparing myself to those who have been disabled their whole lives as a matter of course – what I’m saying is that the things that have been said to me regarding my new handicap have been on-par with some of the things I’m sure were said to the disabled folks in question, from their past.

The CDC doesn’t recognize my disability. That’s a fight we’re working on. Don’t make me have to fight you all, too. Please respect that what’s happening to me is happening, that I AM sick, and that I would give anything to not be…just as many of you felt as children, or even adults, if things came on late as they have for me. This may not last forever, but until it goes away? I think I deserve some damned respect, as I’m having organs removed due to this stupid tick bite that I barely remember.

(Also, if anyone has a spare manually-operated wheelchair, let me know. I’m serious.)

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I promise I will update my Lyme Journal soon – thank you, everyone, for your support and love.

Squeaky Wheel — Mon, 17 Jun 2013 00:34:45 +0000

Right now, though, all I want to do is veg and eat soup and try to stop throwing up (it turns out it’s the doxycycline that causes THAT side effect).

I was cheered up considerably by a phone call last night containing well-wishes from quite a few blogger friends who’ve gathered in Texas (which was, of course, schemed and carried out by Jennifer when she heard I was feeling down via a Facebook post).

Thanks to Jen, Mike, Lawdog, Phlemmy, AD (who interrupted a story to say hi…that’s a big deal, y’all), Jim, MattG, and everyone else for thinking of me, talking to me, and making all of this effort for me.

I feel loved, and right now, that is just such wonderful medicine, I don’t think I can say anything else, else I get all dehydrated, again.

So…here’s a butt-cone: <3

DRAGON LEATHERWORKS ANNOUNCES NEW SHOP!

Squeaky Wheel — Mon, 17 Jun 2013 00:03:51 +0000

I’m super-excited about this!

My friend Dennis of Dragon Leatherworks is opening up a brand-new shop in Oak Ridge, TN.

From the web site:

We’re well on our way to get the store up and running! First, our future location and contact information.

Dragon Leatherworks
1956-B Oak Ridge Turnpike
Oak Ridge, TN 37830
1-865-483-7100 during business hours, 1-865-240-1625 after hours.

Once we are officially open, our store hours will be:

3PM – 8PM Tues/Wed/Thurs
3PM – 9PM Fri
10AM – 8PM Sat
Noon – 5PM Sun
Closed Mondays

Naturally, we’ll be showcasing our holsters, gunbelts, and leather gear, and also offering full-service on firearms, including transfer services, sales, consignments, and trade-ins. We will also carry pocketknives, safety accessories for shooters, targets, etc.

Of course, our online website and ordering system will remain for our hand-made custom holster and gunbelt offerings, and our future plans are to tie the website in to our in-store inventory of firearms, supplies, and accessories. This way, our local customers can buy online and come to the store to pick up their purchase, while our out-of-state customers can select from our inventory and have products shipped.

If you’re unfamiliar with Dennis’s work, perhaps you’ve seen this post by a group of Sqrls?

Or maybe you’ve seen a prop from a certain popular network television show?

In case you wanted more detail, here you go. Gorgeous, yes?

Dennis works very hard, has been featured on the news for his work, and definitely deserves a successful run in his shop. I hope you’ll visit if you’re in the area, and if you’re not, well – check out his website and if you see something you like, drop him a line!

(Note: Dennis has also donated a 1911 holster to the raffle. So you have a chance, for $10, of winning a beautiful hand-crafted piece of leather that will absolutely not let you down.)

(Another note: if you think it’s weird that I keep linking to “my own” raffle, consider this: I didn’t ask these folks to do this for me, and this circle, while large, is very close-knit. I’m giving people who sell products exposure, in my mind, which is the least I can do given all that’s being done for me right now. On that note, Jennifer’s hubby, Michael, as I’m sure you’re well-aware, also makes holsters and belts, so go check him out, as well. Is that rude to include “rivals” in one post? I don’t care…consumer market! I love them both!)

BOOK DISCOUNT – to directly benefit surgery costs, as well as for CCW information. Y’all wanna read this.

Squeaky Wheel — Wed, 12 Jun 2013 04:52:40 +0000

The Armed Traveler has offered to sell his collaborative book via his website at a discount to anyone who wishes to have a copy. The details can be found on the website as well as below, but it’s basically a travel guide for gun owners to know when they’re safe to have their gun on their person, when it needs to be locked, etc. This is invaluable, with so many people traveling.

The discount you get by using the code SQWTN2013. This will give you $2 off the $12.95 price. That $2? Will be donated to my surgery fund through the end of July. From that point on (as in, as long as the site exists and the book is being sold), you will still get a discount, and I will get $1.50 (the other 50 cents will go to another charity – they do this monthly, so buying the book is STILL a great thing, because you benefit others, regardless!).

The codes are the only way he can track the orders in order to make his donations, so make sure you enter yours!

When you order the book, you get access to updates, as well, so you can make notes as things change directly in your copy, so that you’re always informed. Jennifer has done an excellent review, and there’s a code on her site, as well, which also benefits my surgery fund, so pick your site, and go get the book!

Also? There’s a copy in the raffle. Giggity.

So. You get a great book at a discount, and you get to help a cause. What’s not to like?

Here’s information straight from one of the authors about the book and its purpose:

Us:
A group of us – 2 retired military (one army and one navy), one of whom – me – is also a retired lawyer. Please do not ask me why I did the lawyer thing after being a Naval Aviator for 20 years and change, All I can say is it was decision that lacked malicious forethought. The third “Us” is computer guru (or geek if you prefer) – and all are 2nd Amendment advocates.

The Book by “Us:”
Unlike most gun law books, this one is more a road atlas to traveling and designed to be taken with you as an easy to read guide.

There are 2 sections and 2 appendices. The first section covers relevant federal laws such as 18 USC 926A (transporting firearms through states regardless of the state laws) 930 – prohibiting firearms in federal buildings, and 16 USC 1a-7b – carrying in national parks and wildlife refuges. 1a-7b is a pretty straight forward law, but there are some areas that people need to be aware of. This section also covers transporting firearms on airlines and Amtrak as checked baggage.

The second section is the state section and the meat of the guide. Each state has 2 pages. The first page contains a color map of which states recognize that state’s ccw and some other important info.

The second page lists popular areas and whether you can or cannot carry – airport terminals, casinos, bars, restaurants, parks, universities etc. It also provides a list of all other areas you cannot carry. Next it lists restricted and prohibited weapons and ammunition and finally any restrictions on transporting handguns, long guns, “assault weapons” and NFA firearms (limited to machine guns, SBR, SBS) and whether you must transport them through the state under 18 USC 926A.

Unlike most books, this one does not try to explain what the law means – just what you can and cannot do (well legally). It makes it extremely easy to determine if you can carry in different places at a glance and if you need to transport firearms (with or without a ccw) in a certain manner within and through each state. Each entry has the relevant statute cited so a person can check the website that hoists that state’s law – the urls for each state are provided.

The 2 appendices are “federal and state” and “national parks.” The federal and state provides contact information for each state and DC, urls to their laws and their firearm website, if they have one. It also contains supplemental info like what the state’s definition of an “assault weapon” is and lists in whole the relevant statutes for reciprocity – which, as explained in the federal section could be important if you are transporting firearms under 18 USC 926A. The national park section has all the official units of the national park system as listed in the 2011-2012 Red Book – the Department of Interior’s official listing of national park “units” – with their contact info, website urls, what state or states they are located in and which ccws you must have to carry concealed in each park or whether concealed carry is prohibited.

Laws change, so we have a website which will be launched in the next 2 weeks where we’ll list changes in the law and reciprocity. It is user friendly (least I think so). Click on the state and you will have all changes to the book for that state. The website will also sell the guide (as well as Amazon). The $1.50 will be paid for each copy sold through our website.

We think this is a great guide (of course we do – we wrote it) and we think it is a book that will sell pretty well.

The book is coil bound so you can flip it over and read while you’re on the road (preferably while someone else is driving), the maps are in color, the cover and back are laminated, and there are some really cool quotes. Forgive me, finding the quotes was a nice break to reading all the gun laws of the 50 states and DC along with the Federal ones…most of which are linguistically challenged, so I have to mention them.

Lyme Journal – Days 10 and 11

Squeaky Wheel — Wed, 12 Jun 2013 04:37:01 +0000

June 10, 2013

Today was a rough day.

I got a call Sunday telling me my CD-57 cells (which are a type of “natural killer” leukocyte, like T-cells for HIV) are low. Lowest acceptable is 60, mine are 38.

The accent is still bad. I called my Lyme doc’s office (to get the CD57 numbers, since they’d just called me on Day 9 and told me it was low and consistent with chronic Lyme), and their answering machine didn’t work, so the front desk had to pull a nurse to talk to me to give me the results over the phone, and while on the phone, the nurse recognized my name, and was like, “You feelin’ okay? You sound a little funny.”

So of course I told them about the speech change, and they went on freakin’ red alert, asking me stroke-victim questions. I had a migraine Thursday night. I woke up Friday with this speech thing. That’s it. No, no other symptoms. Yes, I can see. Yes, I can move. No, there’s no unevenness with my strength. No, nothing else is affected except my balance, and that happened as soon as I started taking the antibiotics. You get the idea.

So…they took me off my abx.

Basically, they’re waiting to see if my accent goes away. I made this video shortly after getting off the phone with them:

So, yeah, I was upset. But after about 5 hours of thinking, talking to others, and also communicating with some family, I made THIS video:

You’ll note they sound different. It’s not consistent. I can only guess as to why – muscle fatigue.

The funny thing is, later that night, in a Skype call with a friend, I had taken my meds and was getting tired, and the more tired I got, the more “normal” my accent got. I have NO explanation for that one, except “brain pre-occupation,” or perhaps “swelling lessened due to blood flow to brain slowing.” Nothing. I really don’t know.

I kept dozing, but didn’t get any real sleep. It WAS nice, for once, though, to not have a stomach-ache when I did go to bed. Very nice.

_____

June 11, 2013

Today was kind of a wash. I confirmed my return to work, along with my limitations, and will start that, tomorrow.

I have several things I need to do, blog-wise, and I will have to get to them, tomorrow.

The soles of my feet hurt, but no bad effects from stopping the abx, yet, except gas. Seriously. It’s…not normal gas. Don’t know how else to describe it.

My depth perception is off – I smacked my forehead on a storm door and a mirror, today. Spacial recognition, I have…depth perception…uh…notsomuch. So Forrest is driving me to work tomorrow, my dad’s driving me home, and maybe I can drive myself Thursday. We’ll see.

It’s really hot and humid outside, and that negatively affects how I feel, so I’m just exhausted.

The voice thing is getting a bit better, at least. Small, but noticeable, improvement. I’m going to take my iPod and headphones to work tomorrow so that people might leave me alone…heh. I don’t feel like having to explain this to everyone, because the longer I talk, the worse it gets.

I spoke to my dad on the phone, today, and he seemed a little weirded out by my voice, but he was more concerned with me getting a second opinion. If only. I sound like a lunatic, already…not sure what asking a regular MD would do at this point, except cause them to be like, “Uh…faking. Yeah, get out of my office.”

We’ll just have to see what happens, I suppose.

Goodnight.

Lyme Journal – Day 9

Squeaky Wheel — Mon, 10 Jun 2013 12:27:35 +0000

June 7, 2013

I was called today by my Lyme doc’s office to let me know that my CD-57 cells (the equivalent of T-cells in HIV patients, except for chronic Lyme) are low. This means my immune system is…well, we’ll just say that right now? The Lyme seems to be winning. (If I had HIV, I would be on AIDS watch.) Especially given some of my side effects. I’m trying to keep my chin up, but I’ve noticed I’m a bit more prone to emotional outbursts. This is consistent with brain swelling, as well…but I’m also PMS-ing, so it’s a toss-up, there.

I’m on day 3 of talking funny. As “luck” would have it, it appears as though my valium and lortab (taken for anxiety and for cramps) seems to make it lessen. I can’t go through life stoned, though, so I’m hoping it clears up on its own, and soon.

It’s Monday morning, and I haven’t slept properly in nearly 2 days.

However, I figured out what possibly triggered my “foreign accent syndrome” – I had a migraine on my left eye the night before it began. Then it happened. That’s a common tale.

There are videos all over YouTube of folks with this temporary malady for a variety of reasons, and 20/20 actually did a segment on a girl who speaks with a Russian accent when she’s stressed/tired, and she has chronic Lyme. Here’s a video from her YouTube channel:

I’m exhausted, going through my first real herx, and I’m hoping what’s happening is just stress and exhaustion, especially since nerve depressants seem to help. If this happens for every herx, I’m going to be really irritated, though. As it is, when I go back to work (likely tomorrow, if I can stop throwing up – it started up again last night, part of the reason I didn’t get much sleep), I may have to pretend I have laryngitis.

Other than that, I did talk on Skype for quite a while to some friends, and they were able to confirm what I suspected: my accent is not consistent. The longer I talk, the more Russian it sounds, mostly because I get tired and stop putting modifiers in my sentences, and my syllables becomes more…gutteral. I don’t know how to describe it, but it’s like it’s mostly coming from my throat rather than my mouth. My mouth is just desperately trying to make sounds that people can understand in my language – it’s the way it’s contorting that’s causing the issues.

Forrest thinks I sound more Irish. Maybe to him, I do. To me, it’s just noise, and it doesn’t sound like my voice.

I have the Songify app (you talk into it, it turns your voice into an auto-tuned song, it’s hilarious when used with, say, movie quotes), and I made some funny songs before my voice changed, and listening to them tonight was depressing.

I’m going to try to get those files uploaded and working. The difference is surreal.

Let me know if these work. First, here’s a link to my Tumblr, with my “normal” voice, Songified (lines from “Fight Club” – done for fun): http://squeakybisnotamused.tumblr.com/post/52621747735/my-normal-voice-4-days-ago

Now, here’s a link to my Tumblr with my “FAS” voice, Songified (“Forrest Gump” – because the “box of chocolates” thing kind of applies to when I open my mouth…I don’t know what I’m going to get): http://squeakybisnotamused.tumblr.com/post/52621805528/my-foreign-accent-syndrome-recording-from-june-7-2013 (I added the word “antibiotics” in there randomly by request, because I CAN’T PRONOUNCE IT NORMALLY TO SAVE MY LIFE. See also: y’all, ain’t. Seriously. Can’t say them.)

I may have to do a video today if it doesn’t go away. It’s just embarrassing because it’s not me. I know it’s temporary. I hate it, though. I really hate it.

Other issues today:

-trouble urinating, burning when it happens (side effect of antibiotic, apparently)

-dizziness/lack of balance

-bloating/swelling/water retention

-joint pain, etc.

-HEADACHE

-allergic reaction to mosquito bite…after taking 100mg of Benadryl and 10mg of Zyrtec (haven’t had a mosquito bite turn into a welt in years) – this bothers me, because it means that my body’s immune response is going a little nutty in random ways, but meanwhile, is still not reacting to the Lyme. Um, this is a problem.

Oh, and that tick I found on my bed, last night? Was still alive after 27 hours in hydrogen peroxide. He’s now sitting in a bottle of mouthwash (it’s thicker, more viscous, and should suffocate him). If he survives that, I’m building the tiniest bonfire out of matchsticks and roasting him. People actually recommend hydrogen peroxide as an insecticide for plants. IT DOESN’T WORK ON TICKS. Just, you know, FYI.

Anyway, I’m going to probably try to make a video later. I don’t know. Difficult decision.

For now, I’m going to write some emails and try to get some rest, if not sleep.

Lyme Journals, Day 6-8

Squeaky Wheel — Sun, 09 Jun 2013 10:17:42 +0000

I had no internet for a few days, so these are just going to be lumped together, since I really only took preliminary notes for the first two days, so they’re not long, anyway:

_____

June 6, 2013

My main issues today are depression and fatigue.

I’m scheduled to start my period next week (Sunday, pill pack, at least they’re good for something), and my intense cramps that led to my first surgery are SO MUCH WORSE right now, and they’re lasting longer, too…I had one today that lasted around 10 minutes. Just…10 minutes of that level-8 pain. And lortab doesn’t touch it, which tells me it’s related to the surgery site (that’s what happened, last time). Not sure why it’s worse NOW, but I’m going to blame herx.

I’m just going to blame herx for everything.

I got a migraine in/around my left eye, today. I also have a walker, now, for the days which I am unable to use only my cane. It’s on loan from my boyfriend’s boss. I’ve decided I want to attach lime-green streamers to it.

Haven’t lost my job, yet. They’re being very understanding, but my goal is to be back at work on Monday.

_____

June 7, 2013

I woke up with a new symptom, today: Foreign Accent Syndrome…of a sort. I sound Canadian and/or like I’m from Wisconsin, and it won’t go away. I can’t even pretend to speak in my “normal” voice.

It’s like a nightmare.

Since I have no internet, I used a really old medical book along with my newer A&P body atlas to determine that it’s probably my Broca’s area swelling due to treatment…encephalitis from the war in my brain…and my brain’s just doing what it can to get “talk, you moron” signals to my mouth, but muscle weirdness is causing the “accent,” which of course our ears will interpret as being regional, when in fact it’s just your mouth not working correctly.

When I get internet, I’m going to try to not only verify this, but also see if this is something that happens with people on treatment for Lyme or other autoimmune diseases.

Other than that…I watched a lot of movies, today. Played a lot of flash games on my tablet. There wasn’t much else I could do, seeing as how I can’t go outside or I’ll get a horrible rash.

I understand new things every day about people who are going through chemo or serious Lyme treatment – how they could prefer to die over either continuing to live with the disease, or continuing treatment. I don’t know what’s going to happen next, only that I suspect further swelling of the brain could result in very bad things.

_____

June 8, 2013

Now I’m even more “International” – my accent warps from Canadian to Irish to Russian to Australian and back again. It went Scottish once, and because my muscle control at that time was a little weird, I sounded a bit like Sean Connery.

I found out that FAS is associated with brain trauma, either temporary (like my treatment) or permanent (like with a stroke), and there are videos on YouTube of (mostly women…dunno why) folks who have recorded their awkward accents for the world to see. You can see in their faces, how they move their mouths, when you compare them to videos where they’re talking “normally,” that there’s no facial distortion, as there is in people who try to fake accents. There’s no concentration, nothing. It’s just there.

I spend time on my gaming stream doing this thing I call my “Mom voice” – I use it to yell at people for smoking too much after throat surgery (actual occurrence), and for laughs. My “Mom voice” is one of the rotating voices, sort of, that keeps making an appearance…it’s like an extreme version of the Wisconsin/Canadian thing I had going on, yesterday, but nearly every other words sounds Irish or Russian. It’s…god, it’s weird.

It’s like I’m not myself. I mean, I have my own voice, but I don’t feel like it’s me talking.

I called a friend on Skype, and he happened to be streaming a game (which I didn’t know), but he didn’t have any viewers, yet, so I felt okay talking to him. Then people started coming in, and saying, “Is…that…Squeaky?” Yeah. That’s me. Sorry I sound like a freak of nature. I’m not faking.

To be fair, no one really made fun of me – just one guy I didn’t know, and when he found out it was my Lyme treatment that was the likely culprit, he apologized.

Frankly, I’ve been making fun of myself (Forrest thinks it’s cute), so whatever, but yeah. That was not really the way I wanted some of my viewers/friends to find out I can’t speak normally. THANKS, LYME.

I read further, and this is something called Broca’s Aphasia. More swelling will likely result in my being unable to talk at all. I hope that doesn’t happen.

As it is, if this lasts through the weekend (it can last anywhere from a few minutes to yeeeears, depending on severity of brain damage), I’m going to go into work on Monday confusing all kinds of people, and/or pretending I have laryngitis (just write everything down on a pad or something…not terrible, right? …right?).

RANDOM SCARY-ASS MOMENT OF THE NIGHT: I found a TICK on my BED. He’s currently chilling out in an empty medicine bottle filled with hydrogen peroxide. This was at 8pm. As of 5am on Day 9, he’s dead, but it took him at least 2 hours to get that way. SUBMERGED IN HYDROGEN PEROXIDE. WTF, ticks. As if you weren’t scary enough.

I stripped my bed, Forrest is washing the bedclothes, and I put new sheets on and whatnot, but this happened last year, too, so I’m just going to have to be careful and keep checking myself. He didn’t bite me – he was just crawling around. *shudder*

I’m going to flush it tomorrow. I just wanted to make sure it was dead before I did so, since apparently they can fucking breathe underwater for extended periods. I mean…to borrow a phrase from Rachel Lucas…Christ on a Muffin. That was scary.

Unrelated to the tick, but related to my day, I had my first overwhelming nausea tonight. I ate at around 11:30 and took my meds, and while I tried to stave off puking by taking a Zofran, I ended up losing my dinner to the toilet. I threw up so hard that there was blood in it…but it was obviously from my throat or something, because there wasn’t a lot, and it was more with the spit than the vomit, if that makes sense. I also saw lots of blue from both my sleep aid and my doxy. :-( I barely absorbed anything, but I can’t take more. I just have to continue in, well, a few hours, actually.

I’m going to take my mutt-accented-ass to bed. I hope lots of rest will keep me from sounding like I’m making fun of every nationality on Earth tomorrow.

Lyme Journal, Day 5

Squeaky Wheel — Thu, 06 Jun 2013 04:33:30 +0000

June 5, 2013

Slept through alarm…but seeing as how my alarm clock unplugged itself (the plug is heavy, this is not an uncommon occurrence), I’m not surprised. I fell down again upon exiting the bed, but no one was there to help me, so I soldiered through it so I wouldn’t piss myself.

I managed to keep food down, today.

My skin is still burning.

I tested my spray-on dry shampoo, and it works okay…it’s passable.

My friend J brought me a sandwich for lunch and hung out with me for a while.

Student loan company called me no fewer than 7 times today, but only left one message, with their last call, which is usually around 8pm.

I was hurting more than usual mid-day, but found out that we were going to get severe weather, tonight, so that explains that.

I stopped taking my ibuprofen, and my stomach doesn’t hurt AS badly, tonight. We’ll see if that correlation lasts.

Tried to nap earlier, phone kept waking me up. I’m about ready to answer the phone and say, in my best Southern Ghetto accent, “I’wn know who y’all tryin’ tuh git, but she ain’t got dis numbah, so y’all need to quit callin’ me,” and hang up.

I’m feeling the myriad of intense emotion that comes with brain swelling. Anger, sadness, happiness…they flow through me like some sort of broken water dispenser that changes temperature a lot.

Other than that, nothing new to report, really. Today is the first day, however, that I’ve felt truly alone. No offense meant to my boyfriend or my friend who came by – I appreciate them both, very much. I’m just…no one understands exactly what I’m going through, and everyone misreads my vocal tone as angry, because I’m so tired I can’t change it. I have to actually tell people, “I’m NOT mad at you – I’m exhausted. That’s it. When I’m mad, I will tell you, trust me.”

And I will.

Because that’s how I roll.

I’m waiting for my nausea to die down so I can get some sleep. I’m sleepy, just feel like part of that is going to include messing up my bed if I lay down, at all.

Hand and face swelling have been kind of bad, today.

Uh, end report.

Raffle FUNdraiser update.

Squeaky Wheel — Thu, 06 Jun 2013 04:09:14 +0000

Over at Jennifer’s place.

I’m going to try to keep up with posting these as I can, but with my treatment, trying to get back to work, and catching up on stuff around here, it may be difficult.

Well, scratch part of that last entry…

Squeaky Wheel — Wed, 05 Jun 2013 10:05:00 +0000

…I’ve developed a very itchy, bumpy rash on my right foot (top) and my left hand (top, just below the index finger knuckle).

I also haven’t been to sleep at all because of alternating stomach pain and muscle spasms. My wrists, thighs, calves , and even my neck just randomly jerk.

Am calling LLMD tomorrow (today, I suppose) to find out WTF to do. I can’t lose my job over this. I can’t. f I do, I will have NOTHING except my bed and online interaction, and no offense, but it’s nice seeing people in person.

As an aside, and a tie-in to my surgery (which Jennifer has so kindly outlined the cause of, in extreme layman’s terms, here), the constipation from the abx is causing me to have severe menstrual-type cramps, though I’m nowhere near my period. The colon tugs on the uterus when it does its thing, and of course that causes pain. Alternately, when I’m having bad enough cramps, my bowels in that area are just…closed or something. THAT is why I need this surgery – and I wasn’t completely lying when I said I have to be careful when I cough, STILL, because of my surgery site. It’s not the external ones, of course – it’s the scar tissue that’s forming from the excision, which is why hysterectomy is the best choice right now…I may get scar tissue, but at least it won’t have such a pliable organ to manipulate.

NOTE: I have gotten some awesome emails from folks. I will be pasting them here, with named changed to protect folks, but it’s really, REALLY nice to get an email from someone who’s been through what you have, to a certain degree, or is currently doing the same thing you’re doing, and having the same struggles. I’m no expert, by any means, but it feels good to say stuff like, “there are days when all I can tolerate are gluten-free peanut butter sandwiches and milk, and my stomach won’t accept anything else, for some reason,” and get a reply like, “I know! Mine’s brown rice with salt. I don’t get it.” This, of course, sparks a conversation about body chemistry, level of treatment a person is on, among other things, and having someone to just go back and forth with, even when you’re so tired all you want to do is go to sleep forever, is invaluable. It keeps you from giving up.

Not that I’m close to giving up – I’m just about as frustrated as someone trying to take a chlamydia piss about my stomach acting up the way it is. (Nice visuals, eh?)

Anyway, so now I’m getting rashes. So add tat to the list. Calling doc later, as I said. I need to return to work. NNEEEEEEDD TOOOOO.