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the end?

I went to the Lyme doc, today. It was not a happy visit.

It was warm outside, the A/C in our car still doesn’t work, and it’s about an hour drive, so by the time we arrived, I was feeling a bit foggy, and that might have led to the events of the visit, but Forrest clarified a lot of things for me (basically adding his view of what’s been happening), so I suppose this is as accurate an explanation of how things are as I can get.

The bottom line is that my LLMD tried, several times, to tell me there was nothing more he could do for me. I interrupted him every time, because, as I’ve told a few people, I’m not exactly ready to have the shit kicked out of my hope, quite yet.

The gist is that, after a year of antibiotics, despite my surgeries, I should be seeing some improvement. And there ARE improvements, it’s just that they’re weirdly specific, such as my pain being less generalized and more localized (which I credit the neurontin for, as this is a recent change). Or that there are many days, lately, where I don’t need a cane or the wall to help hold me up when I’m walking around my house. I’ve traded that extra mobility for quicker fatigue.

When he asked me how I’m feeling, I said, “eh?” and honestly couldn’t answer more than that. He looked instantly dejected, which made me feel horrible, because I LOVE my doctor. He actually cares. I don’t get a lot of medical professionals who do, and here’s one who works hard, does what he can, is close enough for me to reasonably visit his office (AND they take insurance!), and I’m over here shrugging like I’m just there for tea under burden of responsibility. I quickly tried to tell him about how I’m about the same, at least in terms of severity, though in different places than before, and he jotted a bunch of notes while nodding and looking grim.

I should note that my temperature was 100*F during this visit, and no one said a word (aside from the nurse reading it to me). I have a friend who has almost no internal climate control, any more, due to Lyme. I’m wondering if the same thing is happening to me, and if perhaps my doctor knew, and figured it wasn’t worth discussing, in light of the bigger picture.

He began to tell me about his colleagues and mentors who would possibly be able to help further (with I.V. antibiotics, which I can’t afford even if they did take insurance, because the doctors who provide those services usually only deal in cash, due to insurance companies being dicks), all while expressing regret that we’ve done so much and seemingly gotten nowhere. He kept using the phrase, “nothing’s changed.”

A lot has changed. A LOT HAS CHANGED. It’s just not linear – it’s not an upward slope or a downward spiral. It’s a mixed little pile of spaghetti noodles moving in all kinds of directions, some trending up, others trending down, many of them unreadable through the noise, but THEY’VE CHANGED. Two years ago, before I started Lyme meds, or was even completely confirmed to have Lyme, I was nanny to a two-year-old. I was going to graduate school. I was able to drive. I’m not able to do any of those things, any more, but the fact that I still have most of my mental faculties, whereas before I could barely finish an assignment due to fatigue, is a big deal. I get fog, still. I have trouble remembering if I washed my hair while showering, most of the time. But when someone asks me a technical question about Lyme, or something else I know a bit about, I am there, I am present, I am a machine. Two years ago, if you’d asked me what Bean (the girl I babysat) was supposed to have for lunch, or what time her afternoon bottle was, I’d have to consult a detailed schedule given to me…and this schedule was consulted the ENTIRE TIME I worked as a nanny. It wasn’t just a reminder to make sure I didn’t screw up, it was a reminder that, “oh, this thing happens, now.” Every. Day.

ANYWAY, through all this, we’re talking about my depression (which I know is affecting how I feel – but I know how depression affects me, personally, and the majority of my physical symptoms aren’t from that. stress is definitely causing some issues, but I can pinpoint which ones those are, too. i’ve gotten to know my body very well the past few years), my doc is trying to think of a referral to a counselor, and I’m thinking, “There’s more I haven’t asked him. Speak up, Bonnie.” All I could do was stare at the floor and try not to cry (I failed at that).

I finally implored him as to how we could check to see that the antibiotics are no longer working. He said I should take a break from them for however long it takes (basically, I’m to quit antibiotics. I mean, there’s no “pick it back up in 3 months,” it’s more like, “if you need them, call, but I don’t expect to hear from you any time soon”), and meanwhile he was going to want to visit Bartonella again, since it has more brain involvement, and my nerve symptoms are so bad that he agrees I should see a neurologist and get a brain scan and lumbar puncture to check for MS, among other things.

“Visit Bartonella again,” would basically mean that if I start getting more sick off of the antibiotics, he’s assuming, unless proven otherwise by the Lyme test I took, today (standard – the same test I took in 2011 that was “technically” negative, even though I did have a positive band), that my Lyme is gone and that Bartonella is the cause of my remaining symptoms…until proven otherwise, which, as I’ve covered before, means jack and shit because there’s no simple way of diagnosing Bartonella, either.

Given all of these things — my financial situation, the fact that having health insurance is no longer a boon in terms of my recovery, the lack of other Lyme resources in the area — the diagnosis is likely that this, right here, is my life.

My life will remain as-is for as long as can be reasonably projected, and then I will die from Lyme.

That’s not drama, that’s not conjecture. That’s a fact brought forth by circumstance.

I’m not saying I’m going to die soon, or that I’m giving up on life. I’m saying that, when I die, it will be because of Lyme, and it will likely be much sooner than I’d hoped, because life sucks, sometimes, and that’s all there is to it.

 

Right now, I am focusing on a TBDAlliance.org charity stream I’m heading (May 16-18, held here, 24 different streamers participating for 72 hours to raise money for Lyme research), and on trying to get my IGM stuff finished (I somehow managed to pick up a crapload of game reviews, and I have one to write every day through the 11th, which sucks, honestly, but it’s something to do). I’m also house-sitting for someone out in the boonies the weekend of the charity stream, and it’ll be good to be out in the middle of nowhere, surrounded by chickens, for a few days.

When I have more updates, I will give them, but this entry is nearly 1300 words, so I’ll just say for now that I appreciate everyone’s support these past few years. It’s meant more to me than you may ever know.

And yet, I’m the “crazy” one.

My ability to protect myself with lethal force if necessary is so important to me that, despite needing some significant help right now, I’m loathe to seek it because I don’t want to be declared unfit by the state of TN.

I’m not suicidal, if I’m not homicidal, and it doesn’t matter. If I have to get intensive treatment for any mental illness, I’m automatically declared unfit for concealed carry.

I see the value in this law, I am just personally seeing the downside, right now. I feel like there should be a provision of allowance via recommendation by a medical professional. I would feel a lot better about finding a more intensive solution to my current issues, in that case.

 

And before you tell me that my mental health should be a priority over my ability to carry a gun, part of the reason I carry a gun is because of the things that caused my mental health to get like this. Being raped [or repeatedly abused] tends to make you want to be able to defend yourself. It also tends to give you things like depression and PTSD, especially when you spend years not being believed by various parties, and unable to do anything about it.

Avoiding situations where you might be raped or abused also doesn’t feel like an option when the offending parties both happened to be people I was in serious relationships with…and most abused people know their abusers, some of them quite well. Being prepared is never a bad thing.

 

I just wish I didn’t have to feel like killing myself before people around here would suggest more than prayer and pills.

 

I also figured out why my Lyme is tipping off my PTSD from being raped.  Emotionally, it feels the same to me.

I don’t know how to explain it really well, but the basic situation for both is the same, in my experience:

  • I feel betrayed by those who are supposed to help me [police, doctors, insurance]
  • My situation is not believed by many to be valid [a shitload of people]
  • Authority figures and others treat me like it’s my fault [i shouldn't have been where i was, doing what i was doing]
  • I feel shame bringing it up due to the previous point [yes, Lyme, too]
  • Resources aren’t readily available (or are woefully lacking in support/education)
  • I’m bearing the brunt of the aftermath, but those responsible have seen no consequences due to our current state in society. [for the abuse, this is self-explanatory; for Lyme, "those responsible" is the folks in charge of making sure Lyme is treatable and people are informed. i'm crazy because i know i'm sick and they aren't ready to admit that what i have is a problem]

I’m not really sure what else to say about all this. I’m stressed out, I’m getting worse every day, and platitudes aren’t working, any more.

Happy Lyme Awareness Month.

My dental adventure. Told via Snapchat.

Snapchat-20140428110550

I was pretty damned nervous. I haven’t been in two years, I have a hole in one tooth, my molars feel all jagged…it’s just  not a good situation in there, IMHO.

Snapchat-20140428110638 (1)

This was WEIRD. I had to hold a mirror in my mouth for those last four pictures. The first one, I just smiled (I was so tired. Ugh.), and the second one I had to hold those plastic things in my mouth, resisting the urge to sing the Mr. Ed theme song.

Those, in addition to the x-rays, prompted the tech to ask me if I had braces when I was a teenager. Nope. My teeth just didn’t screw up, thankfully. I also learned from the x-rays that there are no cavities, or anything resembling cavities, anywhere on my teeth. I was confused.

I learned that my jaw bones are still very much where they should be, except that my lower jaw is expanding in response to bruxism. The pressure that’s being caused by me grinding my teeth is causing the bone to grow more around my teeth, leaving to the thickness you see in the last photo – gums don’t normally stick out so far into your lower palate.

Snapchat-20140428110702

Before the exam even started, she handed me a toothbrush, toothpaste, and dental floss. I was like, “Oh, okay, thanks.”

I got to wear these green-tinted, cat-eye glasses to shield my eyes from the light, because it was so bright it was actually starting to make me dizzy. They’re for the kids that come in, but screw it. They worked. They were adorable.

Then she set about to scraping my teeth, which took so little time, I was thoroughly confused (I spent most of the visit slightly bewildered). She told me that the hole? Is actually just a sharp bit from grinding my teeth. Makes sense, since that’s apparently my favorite hobby.

Then she said the following, which made me scan the room nervously for weapons: “You know, there are people out there who would KILL for your teeth.

I could only make a guttural noise with my throat, since my mouth was currently full of metal and hands.

Standard cleaning followed.

Then the dentist came and did his check, proclaimed my teeth to be awesome (seriously, I have never had a dentist tell me my teeth were great – these people must see a lot of awful mouths or something), and then asked me if I’d like a mouth guard, since my teeth were being worn away. I said sure, couldn’t hurt, as my current guard is getting old and starting to get a bit brittle (as those kinds of plastics are wont to do).

He also asked me if I wanted him to buff the corner of my front tooth that’s been chipped off for 8 years (tongue piercing…smart Bonnie was smart), and I declined, because I couldn’t care less about a small chip.

Snapchat-20140428110808

He picked a pink one. I didn’t argue.

This is actually a guard made for sports, and to be worn by people with braces. That made me laugh a lot. They sell them online in rugby shops. I guess I don’t have to worry about accidentally knocking my teeth out while sleep-walking (or sleep-drawing, as the case has been in the recent past).

Snapchat-20140428110849

I’m weird, but you knew that.

Snapchat-20140428110954I go back in November. Fabulous.

Yep. That was my morning.

Good times.

 

 

I am so sorry for the lack of posts.

I keep getting my Sitemeter stats, and seeing that I get a consistent 200 hits per week, and I’m like, “damn, those people are either reading old stuff, or they’re hoping for an update…” and either way, I figure I should write SOMEthing.

I mean…updates…I’m still sick, still on the doxy/flagyl combo, my kidney infection cleared up, I got a HORRENDOUS hospital bill (that covered my deductible, so yay, but that I don’t have the money to pay, so boo…but we’ll work something out, I guess? I’m still trying not to freak out about it), and I’m going to the dentist on Monday.

I haven’t been to the dentist in 2 years, and I have a hole in one of my teeth (like, I can feel it with my tongue AND see it in a regular mirror…it’s my #19 molar, or the second-to-last molar on the lower left), so that needs to be addressed. Thankfully, it’s only a $50 co-pay for dental work, with 10% after that, and we have an account for that through our insurance, so that should be okay.

Financially, I just don’t want to talk about it. I’m in a giant pile of shit. That’s how that’s going.

SOME GOOD NEWS: I actually got up and danced around like an idiot for about 2 minutes (literally) yesterday. I was listening to “Lonely Boy” by The Black Keys (which always gets me in the mood to move around), and then I started hearing “Papaoutai” by Stromae and just got up, headphones still on, and moved around how I felt like moving. I wore myself out. It was glorious, and my heart rate stayed up for hours (which, um, not good, but I’m not dead!), I couldn’t breathe for a little while (I’ve had a horrible cough due to allergies), but I DANCED FOR 2 MINUTES.

So, you know, that was cool.

 

I’m insanely jealous of everyone who’s at the NRA Convention, and you folks will see me next year. I promise you that.

<3

Kidneys are clean now, got a psych referral, and also a job-ish thing?

Life has been too exciting, lemme tell ya.

I took a week’s worth of cipro for my kidneys, and that was some STRONG stuff, because I ended up getting thrush, despite also taking an anti-fungal and some pro-biotics. That cleared up, though, thankfully.

I had my re-check yesterday, peed in a cup, it was clear, YAY.

However, the reason I probably got the infection? My bladder doesn’t seem to be able to decide whether I have to pee or not, so I will often not know my bladder is full until it’s nearly too late. Conversely, sometimes I desperately feel like I have to pee, and nothing will happen. The urine hanging around so long isn’t flushing things adequately, and bam – kidney infection because my immune system is also shit.

I’ve been given the name of a urogynecologist, and will see her in the future to see if I got nerve damage from my surgery. At least I’m not incontinent. :-P Yet.

_____

I’ve been feeling…odd, lately, which is why I haven’t updated. I’m doing a sort of “this is how it is” update because I need to, but it’s hard for me to work up any enthusiasm for anything, right now. Sorry, guys and gals.

I can feel annoyed, but any other feeling or emotion is like my brain is shrugging and staring at the floor. Forrest had a death in the family, and I was like, “Oh, that’s horrible!” but my brain was like, “Eh” in terms of actually showing the proper emotion. I WAS upset, but I couldn’t FEEL upset, if that makes sense?

It’s not just strong emotions, either. Getting happy about something results in me thinking “oh, i like this!” and then my brain not…doing anything with that information. I will laugh if something’s funny, then immediately go back to being deadpan. It’s so fucking weird.

The closest description I have is that it’s like having outrage fatigue for LIFE. It’s like a denial that reactions are sometimes necessary to get things done, and when I try to fake those reactions, it comes off looking really awkward.

I’m also having some weird flashback things…I feel emotion for those, but it’s more of a panic than anything else…so I brought up getting a psych consult with my doctor, and she gave me a name. I’m going to call on Monday and get things sorted, because clearly something’s going on that needs to be addressed.

My doc made sure that the person I got the referral to has experience with PTSD, so it’s good she recognizes that things aren’t just related to my Lyme.

_____

I have a friend who’s the EiC of Indie Game Mag, and he talked about needing writers for things a while back. I was in the midst of talking to lawyers about disability, and so I was like, “Wish I could help!” Well, now that the lawyers have said “um, we can’t help you,” and the SSI office keeps putting me on hold indefinitely (every time, they say, “Oh, um, I need to check something…” and then it’s like, 20-30 minutes of being on hold, someone picks up the phone, says something unintelligible, and then puts me on hold, again – I seriously can’t do that shit), I figured, fuck it, I need something to do, and it’s not like I’d have a lot of demands on my time if I’m just writing a blurb every so often, right?

So I’m doing assignments every Monday and Wednesday (news pieces given to me by the EiC), pieces highlighting games that devs have posted on the forum directly, and I even have a review that’s going to be in the magazine that’s being e-published in April (it started off as someone else’s piece, she had bad luck with the game, I helped her, turns out she couldn’t use my experiences with the game in her review, and I was asked to do the review, instead, since I had some more comprehensive things to add due to getting a bit farther in the game).

It’s not a huge money-maker, and we’re not even getting paid right now, but it’s something to do, and as soon as some stuff gets organized in terms of assignments (we’ve had some overlap – people writing things when someone else beats them to it, etc.), I think it’s going to go really well.

I have a few pieces up on the main site now, and will have my first piece up on the mobile site as of later this morning.

It’s not very demanding. I literally just describe what the games are, post a picture and a video (if there is one), and publish it (it takes about 30 minutes if the dev includes all of the relevant links). I’m not even in the more-contested realm of reviews, officially, so I don’t anticipate any flak.

So that’s a thing I’m doing.

…and that’s pretty much it, for now. Life is, as I said, terribly exciting.

Another ER Adventure!

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?

Regarding Arizona (quickie)

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:

Calmer.

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.

…again.

.

Blergh.

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.)

More awesome friends, and “new” medication.

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

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