I’ve been to the ER 3 times in the space of 13 months.
January 2013, it was food poisoning.
July 2013, I was having trouble breathing, which we finally attributed to my medication interacting.
Yesterday was just full of surprises all around.
I woke up at around 7am on Wednesday with my stomach feeling oddly empty. I wasn’t hungry, but I couldn’t sleep because of the weirdness, so I ate half a granola bar, took an anti-emetic (because sometimes early-morning-empty = nausea for me, for some reason), and tried to go back to sleep.
By 10am, I was awake and vomiting. I felt “woozy” and foggy, and was having a hard time focusing my eyes.
I would take a sip of fluid, and throw up within 30 minutes. I called Forrest and asked him to come home, because I wasn’t sure if I would need him to take me to the doctor.
He brought home Gatorade, which I tried to sip, unsuccessfully. My fever went from 98.4 to 100.3 in the space of 30 minutes. I started to get horrible muscle cramps in my legs and lower back.
My doctor’s office was closed, so we decided to go to a minor med and see what could be done.
They IMMEDIATELY told us to go to an ER, because it was clear I would need an IV, and they don’t do that stuff, there.
The ER we chose was slammed because of the norovirus outbreak in Memphis, and for a while we were afraid that’s what I had.
We were in the waiting room for an hour before we were called back for registration. A paramedic did my IV port and drew blood, I gave a urine sample, and we were sent back to the waiting room for another 2 hours.
Side note on the urine sample: I didn’t feel myself having to pee, nor did I feel it when I was peeing. I looked down after 30 seconds, and the cup had fluid in it. That surprised me, but I didn’t think much else of it.
While we were in the waiting room for the second waiting time, there was a woman laying on a bench and moaning – apparently she had pancreatitis, and hadn’t eaten in several days. I didn’t hear anything except a few moans and the word “paramedics” from her, because I was busy having horrible muscle pain. I was around a 6 on my pain scale when we arrived, and by the time we were called back, I was a firm 9 and was doubled over.
My arm is covered with stripes of pressure bruises from the BP cuff, because I was in so much pain that the machine couldn’t get a read on me, so it just kept squeezing. The nurse left for about an hour to “let [me] calm down,” which kiiiind of didn’t help, because the longer I was there, the worse my pain got. My chest started hurting, and I couldn’t tell you if it was from panic or from my stomach being empty. I have no idea. But I ended up getting a 12-lead EKG while waiting for the doctor to come into the room. THAT was fun.
My pain was so bad at one point I started biting my lip to distract myself from my legs and hips, and I nearly bit a hole in my bottom lip. I was so dehydrated that my lips and tongue were sticking to my teeth.
Finally, the doctor came in, asked questions, stopped for a second after he learned I had Lyme disease, and then a nurse came in to FINALLY start the IV so I could get some fluids. I was given some sort of antacid (through the IV…which…okay?), some zofran to keep me from puking any more, and then some morphine so I could calm down.
I immediately got a headache from the morphine, probably because I was so dehydrated, but it took the edge off, and thank goodness, because I don’t know if I could have stood that, any more.
When I say I was in pain, you’ve got to understand, this was very close to the amount of pain I was in when I woke up from my surgery and they had forgotten to check my chart until the last minute, so they didn’t know what kind of painkiller to give me until I was already vomiting and thrashing around. No matter how I moved, stretched, breathed – it was there, and it was all over my body. I’m still not sure why I was hurting so badly, but it’s over, now, so I’m just going to hope that doesn’t happen again.
After another hour, they took me to get an x-ray to make sure I didn’t have blockages in my intestines, because apparently the fact that I was vomiting but didn’t have diarrhea was a big deal, and those came up clean.
Then they swabbed me for strep throat.
Then they took MORE blood.
We had arrived at around 5:30pm on Wednesday.
At 1:30am on Thursday, the doctor came back in and said I had a nasty UTI, prescribed cipro for the infection (which…I’m already on two strong antibiotics…how did this happen?!?), painkillers because yeah, and more anti-nausea meds, and we were finally able to prepare to leave.
Another hour, the nurse came in and unhooked everything, gave me some juice and crackers (which I thankfully kept down), and we left.
NINE HOURS. For what turned out to be a kidney infection.
My fever is down, my pain is manageable (I’m still really sore from what was apparently 3 solid hours of being completely tensed up, but I’ll deal), and I’m drinking cranberry juice and trying to remember to use the toilet regularly. I have a follow-up appointment with my doctor in a couple of weeks (to give the antibiotics a chance to work).
My life is too exciting.
So how’s everyone else’s week been?
I have a few words, and a NSFW video.
Gun owners, you vote with your wallets, do you not? When a place isn’t friendly to gun-owners, you just…don’t go. If you can find an alternative that’s friendlier and more willing to either promote or just be completely apathetic toward gun owners (I’ll take apathy over aggression any day), you go there, instead. Easy.
And WHY do you do this? Because the owner of a company has the right to provide or deny service to any individual for any reason. They are not obligated to serve you, just as you are not obligated to go there for service.
If they cite religious reasons for not wanting to serve a person who isn’t heterosexual? OH, WELL. It’s their loss, financially…and it’s their right to observe their religion as long as it doesn’t come at the direct expense of another (just like it’s our right to carry within the law as long as we don’t hurt anyone else). Your feelings being hurt, or you getting angry? That isn’t a valid reason to try to deny someone of a right…just like it’s not a valid reason to strip us of gun rights.
If you’re for gun rights, but you’re against religious freedom, you might need to look at your priorities, again. Until someone does something that ACTUALLY hurts you (instead of hurting themselves…which, let’s face it, that’s all this bigotry will amount to), just leave it alone and fight the battles the way we are with other things: by not being jerks, by networking, and by showing that people are PEOPLE, whether they’re gay, straight, gun-owner, religious, whatever. You don’t win people over by yelling at them. You do it by giving them space, recognizing their viewpoint, and slowly but surely introducing yours until they wedge themselves into a corner.
If they never get into that corner, THAT’S NOT YOUR PROBLEM. Live your life. Let them live theirs. Take your business elsewhere. LISTEN TO JBDUBS:
I talked to my friend, who was diagnosed with ALS before he was finally discovered to have Lyme disease (like, they gave him 6 months to live, he can’t get a job because a doctor once told him he was terminal, etc. – it was rough), and who also happens to be the guy I borrowed my wheelchair from (because of the aforementioned ALS diagnosis, he used it for a while, himself), and expressed my concerns, because I’m in a REALLY bad way, right now.
Fevers at random, severe weakness, shakes, heart palpitations, really low blood pressure, nausea (vomiting regularly at night), feeling cold, pain every-freakin’-where, etc. It’s horrible.
And on top of that, it hurts to talk, and my brain will regularly tell my mouth “no” in the middle of saying something, so I’ve just been using a TTV online program around the house, because it’s easier. I talked to my friend, yes, and now my face is completely numb and feels like it’s going to fall off. Blech.
The fact that he’s been freakin’ pronounced as terminal, and is now able to take care of a good number of things (despite his relapses, which are just a thing that happen), makes him the idea person to go to when I need a perspective check.
I ticked off my symptoms, and he smiled and told me that sounded about right, meaning yes, this is a thing that happens during Lyme treatment, and it’s basically just a severe herx.
He had the same symptoms manifest on an airplane. So that’s fun to think about.
Anyway, this is another hurdle. It just IS. And there’s not really anything I can do but power through it, so that’s what I’m going to do. I’m going to see if I can get another Lyme test next month (since that’s when I should have insurance, again – long story), and see if those little buggers are active enough to tip off the “official” Lyme test, and base future treatments on that.
I just have to regroup.
My stomach is just all kinds of unhappy, today.
The medication I’m on makes me nauseated, as I mentioned.
At night, it’s particularly bad.
I’ve thrown up so much I’m actually worried about my teeth and the back of my throat.
There’s no real point to this post, I’m just complaining.
(If anyone ever wants to argue with me that what I’m going through isn’t comparable to chemo for cancer, just save your breath. Thanks.)
While everyone else I know was watching the Super Bowl, some friends of mine on Twitch had something called the Squeaky Bowl.
I found out about it a few days before, as the guy organizing it needed my paypal email. He used our joint charity streaming channel to host the event (a 48-hour stream), and said to me, “You’re our February charity!”
In 48 hours, they raised $3055.69 for me, and then a few more donations came in later, to get the total up to $3100.69. (Yes, the .69 was on purpose, and actually pushed some people to keep donating.)
With the new insurance costs (turns out they’re from Forrest’s company, not the new ACA laws), this will help me for about 3 months. I’m still completely flabbergasted, and grateful that I have so many people willing to help me, right now.
I recorded a thank you video, and there’s going to be an article on IGM on Wednesday about the event.
I’m just so thankful. <3
You may notice that my speech is weird in that video. Well, as I said in it, I’ve had a fever for 3 days, and I’m in a lot of pain…my muscles are just like “nope” whenever I try to move around too much.
I started back on Flagyl (yes, that’s the stuff that gave me the weird accent…but the speech thing started before I started taking it, again) and doxycycline (the stuff that makes me puke! yay!), because, well, we’re rotating, again, and the medication for the bartonella did terrible things to me, and I asked to not continue it. My LLMD said what I was thinking: “If the side effects are that bad, and they outweigh whatever benefits you may be getting, then it’s not worth it.” He felt really bad, and I was like, “We had to try it, right? I mean, we learned, right?” to Forrest after the doc left the room, and he agreed, but it was a rough visit.
I also started on Mirapex for my RLS, since nothing else seems to be helping it, and I can’t sleep because of the pain.
Ironically, it’s gotten worse since I’ve been on the Mirapex, but I have no idea what’s causing it, because other things have changed, as well.
I’m also on trazodone, again…womp womp. I’m on a really low dose, which should be helping, but it’s mostly just keeping me from being able to wake up well the next morning…so I end up staying in bed until 1 or 2pm after being awake until 4 or 5am that morning.
I’m not in great shape right now. I’m trying to stay positive, talking to random folks, not getting too in-depth about stuff…basically just trying to stay shallow so my thoughts stay shallow, and I don’t get too bogged down and depressed. If anyone’s wondering why they haven’t heard from me, that’s why.
I’m trying not to withdraw completely, which is why I’m making myself do this update.
It’s just rough to be like “this is how it is,” without making jokes or blowing it off. I don’t like to make light of things in here, because this is where I…well…it’s where I write about how it is. It’s a reference for me, and it’s been a reference for others.
I’m not in great shape right now. I’m actually in pretty terrible shape. But this is part of the healing process, and I will get better or die trying. And I’d prefer not to die, kthx.
Thinking a soak in epsom salts wouldn’t be wasted, right now…I just wish I could find a good padding material for the tub that isn’t inflatable (and thus a creator of reduced tub depth)…
…and that’s pretty much all I’ve got right now, because my hands are starting to hurt. <3
On Friday, my student loans are going to default because I have no income, and am really not fit for work in several aspects. I have been called approximately 30 bazillion times by my loan officer about this, and when informed that getting a job is not possible, they say the SAME THING every single time: “Can you borrow the money from a friend or family member?” Yeah, sure, let me just go ask my friend Bill Gates for $130K, brb lulz.
There’s an economic hardship clause, but apparently I don’t meet it? I’m confused and angry about that.
I’m more pissed about not being able to work than I am about my loans defaulting. It’s like, what are they going to do? Take my car? I don’t drive it, anyway, because I CAN’T. Anything else of value I have is in my storage unit, and most of that’s probably going to have to be sold, anyway, so I can afford basic bills.
I’m contacting my lawyer tomorrow to see if there’s anything that can be done about this, because if I am forced to try to pay the student loans at this point in my life and for the foreseeable future (like, even a small part of them, because, again, no freakin’ income):
I will not be able to afford my medication.
I will not be able to afford food, because my diet is kind of specific (allergic to chicken = many fewer choices), and apparently it’s assumed having allergies is a luxury, so everything costs more.
I will not be able to afford to keep any of my things in storage.
I will not be able to pay any other bills or incidentals that crop up (including the hospital bills that keep coming in, because my insurance company is being slow).
My disability is being filed, and I might be able to hold off the loan officers with that information, but I don’t know for sure. I also have no idea when my claim will be reviewed, or how long it’s going to take to get through to the point where I have to go to court and be like “Yeah, I’m sick. I rely on the kindness of strangers. I realize SSI is pretty much the same thing, except for the ‘kindness’ part, but I paid into the system, so please just give me a break.”
I also realize that, with my loans defaulted, garnishment of disability is likely going to happen (as well as probably prosecution of some sort), and so while it would help for different things, it’ll basically just go straight to loans, so I still probably won’t be able to afford treatment.
This worry about money is making me feel worse, physically, and that little negative voice in my head? The one that’s basically a little piece of bipolar, thanks to my medication making my brain swell? Is telling me I’d be better off dead, seeing as how my life is such a mess right now that I can’t make a dent in anything.
Don’t worry – I’m not going to listen to it. I’m not selfish or stupid or anything.
I’m just stressed and panicking a lot.
I found out a friend is sick this weekend (like…very sick), and the same night apparently pissed off one of my best friends due to a double-standard I wasn’t aware existed with him. (he says something, it’s okay…i say it, and he gets butthurt).
The latter is not a big deal, in the scheme of things, but it’s like piling bricks on top of an ostrich egg. Sure, the shell is thick, but that sucker’s going to break, and it may not take a lot of weight to do it.
Ugh. I just want the world to go away for a while. Life is like Pennywise, right now, and I just can’t handle it.
So far, the side effects of the Levaquin have been as such, for me:
- seeing things (out of the corner of my eye)
- invasive thoughts (not pleasant ones – so far I’ve been able to derail them)
- muscle and tendon pain (more on that in a minute)
- what is either just serious fatigue or loss of motor control in some areas (can’t hold a pen)
- mood swings (it’s kind of like being bipolar, in all seriousness)
I started Mepron 3 or 4 days ago, and am already feeling pretty bad as a result…really tired, but my insomnia is worse, so I’m not able to rest enough to combat the fatigue the next day.
Also, it’s gross.
That bubble wouldn’t pop.
Paint. Tempura paint.
It’s like pudding.
It smelled horrible.
Tastes icky, stains the mouth.
So far, the Mepron is pretty much only making me tired. I mean, yeah, I’m achy, but I know that would have happened, anyway. And the fewer side effects I have on it, the better, because I don’t want to have to take any more of it (at $100 a pop, noooo thank you…and that’s every 3 weeks!) – I’m running low on toothpaste, because it takes two scrubbings to get it off of my tongue.
I’ve only been on it a few days, though, so we’ll see what happens. Fingers crossed that I don’t get (even easier) bruising or (worse) shortness of breath! Those means my red blood cells are pretty much dying a horrible death, and that my liver is next. No liver damage, kthxbai.
Now, the Levaquin…I mentioned muscle and joint pain? I can’t hold a pen. I can type, but it’s hurting more every day. I helped crush some potato chips to use to coat chicken tenders (…and I’m apparently allergic to chicken, now? and that’s a thing that happens to folks being treated for autoimmune disorders?), and I could barely move my hands, later, because my forearms hurt so badly. I still have a walker, and have used it twice, today, to go up and down the hallway to the kitchen. (I need a tray in the front of it to hold food and drinks, because walking with a cup of coffee and a bowl of soup while using a walker is seriously difficult. SOMEONE PIMP MY WALKER, PLS.)
Unfortunately, the walker may not be enough, soon, as my feet are getting in on the “OW OW OW” act…and it’s not just the pressure of walking that does it, although that makes it much worse. As I’m sitting here, lounging in bed, with my lower body as relaxed as I can get it, my left foot (which is screwed up from breaking that toe 8 years ago, anyway – it healed crooked) keeps hurting in the tarsal/metatarsal area. Right smack in the middle of my foot (not the bottom or top – IN in the middle of my foot), behind the middle and second toes, it goes from a sharp pain to an ache, back to a sharp pain, then it recedes for a while, but it feels…tense. Does anyone have foot cramps where your toes cross? That hasn’t happened, but it FEELS like that’s what’s happening, except all the way across the entire width of my foot. My toes aren’t moving…it just hurts.
Apparently this is a “thing” that Levaquin does – it affects tendons, and they can rupture if you’re not careful (just typing the word “rupture” makes me dizzy, honestly, because that would suck so much), but you’re more likely to have pain in areas that have prior injury. For example, I broke my middle toe on my left foot in such a way that it jammed the bones and tendons behind the toe. When it healed, it wasn’t very, um, “neat,” and that disorganization is already making the tendons prone to injury. Add a component that is known to cause further pain, and voila – you have ready-made-ouch.
My right shoulder (torn rotator cuff…4 different occasions, because it never healed properly) also feels off, though it hasn’t decided to make itself loudly known, yet. It just aches a bit. I guess I’m grateful I haven’t had a lot of serious injuries in my life, or I’d likely be a lot more miserable (also thankful that my nose doesn’t have tendons, because with the three breaks, there, that could become miserable REALLY quickly).
Rays of sunshine where you can find them, eh?
Anyway, the invasive thoughts…they come and go, but they’re worse at night. After the second night in a row where I thought I might hurt myself if I couldn’t keep them at bay, I took my guns, knives, etc., out of my room, handed them to Forrest, and told him to lock them up for me. We’d talked about it, before, and we’d much rather take the safe route than have something horrible happen.
The worst part, which I haven’t gotten into, is that my singing voice is really going away. I’m losing control over my voice, it’s easier for me to go hoarse, and while I can still kind of carry a tune, it’s…um…it sounds terrible to me, and there’s “vocal fry” underneath it all.
How is that the worst part, after all that I’ve listed? Well, singing was my escape. It’s what I did when nothing else would calm me down. Now it makes me almost irrationally annoyed, which makes the invasive thoughts worse.
In other news, my disability paperwork is officially being filed with SSA tomorrow via a law firm. I’m filing under fibromyalgia and hypothyroidism, because I have both of them, they both suck, and SSA doesn’t recognize Lyme as a permanent problem (even though Lyme is the reason I have those two conditions). I just had to list all of my doctors, procedures, and conditions over the phone with a legal aide, and holy shit, last year was busy.
Anyway, that’s all for now. Just figuring out one day at a time.
I’ve become part of a streaming community through Indie Game Mag, which is pretty neat. My profile page is here (and the blog is linked there, because a lot of the questions people ask me can be answered here, and this is a public site, so I honestly don’t care): gameplay.indiegamemag.com/squeakyb/
I’ve been slowly developing a sinus…thing…over the past several days. Today it culminated in a nosebleed and some serious dizziness. So that’s been fun. If it turns into an infection, I will be both surprised and bemused (yes, bemused). Then I will likely call my doctor to do research, because whatever bug can infect me right now will have to be a super-bug, and I will obviously be Patient Zero at that point.
So I could be harboring the Zombie Apocalypse in my nose. That’d be fun.
Frankly, gaming has been keeping me kind of sane, even though it’s not productive in the sense that it doesn’t make me any money or whatever. It helps me relax (despite the epic cussing match I had at a game, today), and having the folks in my chat kind of counts as the human interaction I get during the day.
There’s a hitch it in, lately, though, which is making me a little twitchy…it’s not that I’m desperate for the internet, it’s that I can’t keep up with people, and I do have obligations to folks that I can’t meet right now. Why? My laptop got some sort of demon rootkit on it the other night. I was watching a stream, my computer restarted itself, and suddenly I was hearing radio commercials. I honestly thought I was losing my mind. I checked to see if there was something open that I’d forgotten about (like Spotify), but nothing was running. There’s also a rogue sound-bar to be adjusted in my mixer, and it doesn’t have a label.
I would be able to fix it, except my computer restarts itself after 40 minutes, which means whatever scan is running at the time is canceled before it can eliminate whatever it finds. The only reason I know it’s a rootkit is because of Google.
Add in the stress of trying to pay for treatment and other bills when I can’t work, and you’ve got a perfect WHARRGARRBL moment for me.
I do have a possible thing lined up in May (with CREP, again), but it’s short-term at best. I’m exploring other options, but not being able to predict how I feel is a problem. I woke up feeling great yesterday, then ended up having serious migraine issues with nausea and weakness. It sucked.
Also, not being able to drive is a bitch and a half.
I’m not here to complain, though – just to write about what’s going on.
I’m going to try to get some sleep. Nite, Intarwebz.
I mean, aside from the inclement weather, which is somehow only going to make temperatures stupidly low tomorrow. They’re just going to go back up on Tuesday, soooo…yeah. Some winter storm, as far as we’re concerned.
I started my regimen of Bactrim (BID) and Levaquin (once per day), and so far I feel nothing out of the ordinary. But I suppose I wouldn’t, the first day.
I’m in a weird headspace right now – I feel like I desperately want people to pay attention to me, but at the same time, I want to be left alone. I don’t like that feeling, and would like to kindly request that it fuck off.
It’s too close to depression for me to be comfortable with it.
Lyme news: There’s a news station/website that’s peddling a story with the photo lede that has an overlay saying, “Cure for Lyme Disease?” – then it goes into a long explanation of how they’re working on finalizing a way to use gene therapy to help people with rheumatoid arthritis.
Okay, so yes, people with Lyme get arthritis. I have it in my hands, hips, knees, and shoulders. It’s worse some days, and others it’s an effort just to be able to do very simple things. It’s not caused by rheumatism in most cases, however – it’s caused by bacteria.
I’m really pissed about that lede. I know the media has a bad habit of blowing things out of proportion just to get people to watch/read/visit, but for fuck’s sake, you’re spreading misinformation about what Lyme is, what it does, and how it actually works. It’s not the same as rheumatism, it’s not the same as lupus, It’s not the same as MS. Yes, Lyme can trigger all of those things in people with a predisposition, but we also get the symptoms of all of these conditions as a side effect of both our disease and its treatment.
Here’s the article and video for those who are interested.
I am not impressed. I mean, good on the researchers for finding this out. I’m just really pissed about how it’s being presented.
We don’t go through what we go through because of joint pain, only. We go through it for so many other reasons, and paring down Lyme disease into a comparatively simple joint-related disorder is almost insulting.
So there’s my pissant rant for the day.
I’m done because I’m actually sleepy, and I want to take advantage of that. Goodnight.
I keep trying to write a post about things happening this year, but since all of them are depending on other things going right, I honestly have no idea how this year is going to go.
I sincerely hope that all of you have more certainty, and that your collective year is full of good things, no matter what “good” means to you.