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Vertigo, migraine, CT, all that fun stuff.

Last month, before my surgery (and part of the reason I was so concerned with possible hormonal involvement, anyway), I got a bad migraine that manifested first with vertigo. The headache persisted for over a week. I was put on fioricet, which is apparently very good for some folks, but didn’t help me much. It eventually dissipated, though I’m not sure why.

This month, over a week ago (last Friday), the exact same thing happened – I was doing the same stuff as before, lounging while browsing the web on my laptop in bed, got the vertigo, then ended up with an awful headache. I’m still having that headache despite Norco (used to be lortab) and continued use of fioricet.

I had a CT scan today, because my doctor wanted to see if there was anything structurally wrong with the bones in my head, or the spaces in those bones. I got a copy on CD, because it’s what I do. (I got vertigo and blacked out during the scan, but more on that, later.)

Nothing looks remarkable to me in the front or side views, but the bottom-up is…awkward. I know my skull is pretty asymmetrical, but the disparity between that cavity on the right side (lower quadrant, outer edge, really hard to miss) and the one on the left is really weird:

As usual, click to embiggenate. Personal details removed.

As usual, click to embiggenate. Personal details removed.

The one where they move down the skull a bit and show more tissue/fluid is even weirder looking:

You can see my earlobes. That makes me giggle.

You can see my earlobes. That makes me giggle.

Also, because it’s HILARIOUS seeing my fillings, here’s a full frontal of my skull. Sexy:

HI THERE.

HI THERE.

Oh, I might as well show you the side view, too:

It looks like I have no bones in the front of my face, and my jaw is extra-dense.

It looks like I have no bones in the front of my face, and like my jaw is extra-dense (which it actually is from grinding my teeth).

Fun fact: the vertigo always feels like it hits me from the left side, and cleaning my left ear with Q-tips is always a gamble – sometimes the ear canal is nearly swollen shut, sometimes it’s really tender and feels like I stabbed it when I know I didn’t, and other times it’s completely “normal.”

Regarding me blacking out during the CT – I was on my back. The other two times I got vertigo? I was mostly on my back (with my head propped up by pillows). I don’t sleep on my back normally because my boobs are too heavy, so I haven’t experienced this regularly, but I think it’s very significant that I not only got vertigo, but also blacked out, when I was fully on my back and unable to right myself when the dizziness began.

So while this might be BPPV (which is REALLY common, and basically amounts to calcium deposits in your vestibular ear parts), I think it’s still worth exploring with a neurologist (because I need to see one, anyway, because my face and hands go numb and tingly with the vertigo, as well) and an ENT (because, well, ear).

I also have that pulsatile tinnitus on the left side, so again, worth exploring.

 

Anyway, there are some pictures of my skull and an explanation of what I’ve been up to, lately.

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I wrote 4 articles for the July issue – 2 game previews, one game review, and a hardware review (gaming keyboard).

This is my job right now. I am writing articles about video games – indie games – and I’m good at it. I enjoy it. I’m kind of working my ass off right now. I want to get paid for it. Right now I’m getting stipends for mag articles, but I’d like to make money for the articles I write for the website.

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Biopsy’s back! No cancer!

I figured it was better to just get to the point in the title.

The two growths were benign granulomas. There wasn’t even endometrium in there, thank god.

They’re not even suture granulomas, because the sutures have long since dissolved. They were just my body being ornery.

 

I asked my doc if it was possible for those things to grow on the other side of the vagina cuff (i.e. internally, where the uterus used to be attached), and he said, “Um, I’m not sure. Stop asking me good questions! You’re making me look bad!” Hahaha.

(Seriously, though, like I said in an earlier post, this is kind of a rare thing, anyway, so the chances of it growing on the side that wasn’t externally sutured is even more rare. It as just a question.)

I have my follow-up in a couple of weeks to make sure everything’s going swimmingly in the healing department, and then hopefully I’m done with this shit for a while, or for good (prefer the latter).

*jazz hands*

Out of surgery!

They removed the polyp/granuloma/whatever, and apparently there WAS endometrium (or something that looked like it, anyway) right next to it, and both growths were removed and sent to the lab. I’ll have results next week (they should be entered into my chart, which I can now access online – technology is ridiculous, y’all).

IMG_20140627_114633

My surgery took something like 15 minutes, from the time I was wheeled into the OR to the time I was wheeled into recovery. I was making jokes and was totally cheerful, and I distinctly remember, right before I was put under, that when they gave me the shot of the muscle relaxer, I was like “I seriously love you guys. You’re going to do GREAT.” My surgeon was holding my hand (for some reason? and I wasn’t hallucinating), and he started cackling.

I woke up very thirsty, and my first question was, “How long was I out?”

I’m not sure what it is about how they wake me up from outpatient surgeries vs. inpatient, but I prefer the outpatient method. I’m awake, aware, able to hold a conversation, and I feel so much more comfortable. Lucid wake-ups are so much better than either painful waking or curse-riddled grogginess.

I had the same check-in nurse as my surgery in April, AND the same recovery nurse. That was kind of awesome.

I’m sincerely hoping that this is the last surgery I have to have for a good, long while.

The cats were very happy to have me home. They descended upon me while Forrest and I were watching Iron Man 3.

House is messy? Zero fucks given.

House is messy? Zero fucks given.

Thank you to everyone for your responses, emails, and even some donations! Things are rough, but I’m seriously hoping they turn around, soon. I’m behind on so many bills that it’s almost a joke.

My current gig, writing for the video game magazine, is okay, and hopefully it’ll start yielding a profit, soon, because with as crappy as I feel most of the time, writing is one of the only things I can do, and writing about video games is ridiculously easy to me, as most of it is subjective. I can judge a game, boy-howdy!

My sleep schedule is all messed up from the painkillers, but I suppose I should try to get some rest, now.

 

I hope y’all are well.

Raaaaining. Looking for some freelance stuff.

Due to surgery concerns and  other fun stuff, my “get rid of the storage unit 2014″ project is being delayed. I was supposed to have all of my stuff out by last weekend, but OH, WELL, shit happens, apparently.

Now I have to come up with another 2 months of payment. That’s $300, and I have no idea where I’m going to get it.

I’m late on both of my credit cards because, you know, life.

I don’t even give a fuck about my student loans, any more, because they’ve become comically late.

Medical bills are piling up, and Forrest and I are basically just like LOL about them because…we can’t really do much.

This surgery coming up is 10%, but it’s just another bill to add to the pile, really.

And now Casey is sick (our cat – she has a UTI), and we don’t have money to help her.

Some nice folks donated so we can get her to the vet, hopefully by Wednesday, but I’m still just so stressed out because I can’t DO anything right now. I’ve been writing for IGM, but it’s not making money at the moment (I get paid very small stipends every month for whatever’s been printed in the actual magazine, but that’s it), so I’m broke with no real prospects.

I just hate having to worry about money when I’m also worrying about this stupid growth. I don’t think it’s malignant or anything to worry about in that sense, but what if the reason I’m having hormonal issues and whatnot along with it is because it’s growing on BOTH sides of the surgery site? That’s a more involved surgery, which means more money, which means more bills, etc.

So I’m going to ask for help, but not in the “just please donate” kind of way – I would like to see if I can do some projects from home, with writing, and make a bit of money. I’m not very gun-centric, any more, but I can write about nearly any topic. I also do a bit of graphics work, and can draw fairly well with my tablet. If you’d like something, please leave a comment with your real email, and I’ll email you and we can talk.

Of course, if you’d like to donate, I won’t say no, obviously. This community has just given so much, and I want to be able to give back, even if it’s in a small way. Also, I like working. I like DOING stuff, and I haven’t been able to do that much, lately (I can’t drive, yet, which is the main wall between me and any employment outside the home – the illness is obviously a factor, but we’re working on that).

I can’t wait until I’m a functioning member of society, again.

Thanks in advance.

 

Surgery date scheduled! It’s quite soon!

This coming Wednesday, the 25th, I’ll have my pre-op visit.

Two days later, on the 27th, I’ll have my combination surgery/biopsy to remove the stupid tumor-thing.

 

If my body could stop generating medical bills, that’d be awesome.

 

I’ll update everyone when I have news.

I have to have surgery, again! *jazz hands*

It turns out that while I may be experiencing symptoms of PMS and an actual period, the bleeding was not, in fact, from endometrium or anything like that.

The short story is that I may have a suture granuloma (rare-ish for the location, because of COURSE it is). The doctor called it a granuloma, then he called it a polyp. Either one can be cancerous, but is more likely due to irritation. Hell, it could STILL be from endometrium (if it’s a polyp), so WELP.

 

If it’s a suture granuloma, it’s BASICALLY an immune reaction to sutures. I had sutures from surgery, my body wasn’t happy about them, and treated them like a foreign body to be eliminated. Keloids from piercings are very similar, except the granuloma doesn’t really form scar tissue, it just keeps building on itself to keep throwing immune system bombs at the offending material.

It’s like a vascular tumor, basically. My surgeon has only seen this three times in his career, and the first time, he tried to just pull it out in the office (because having a bit of dead tissue at the suture site from the flesh healing awkwardly is normal), and the woman started bleeding profusely and had to get into emergency surgery to fix it.

Which, you know, is a story you want told while you’re laying on a table with your lady bits being scrutinized by a surgeon, a med student (it was his first day, by the way), and a nurse.

I did have a bit of dead tissue at the site of the suture at my 6-month checkup, but the surgeon just pulled it off and we moved on – he asked me if it hurt when he grabbed it with a surgical tool, it didn’t hurt enough for me to care, that was the end. That would have been the beginning of a granuloma, but it didn’t get that far. In the two months since that event, my body has managed to make a pretty sizable growth.

If that last thing that the surgeon removed in March was a growth of this type, then there’s a pattern, and so a biopsy will be done, of course, to make sure there’s not something more sinister happening, like a malignancy.

 

The surgeon thinks that this growth is also responsible, somehow, for my hormones going wonky. I guess if my immune system is reacting strongly in my lower abdomen, they could be irritating my ovary or something, but I’m honestly too damned tired to even think about how that process would work.

 

Anyway, I have to have another surgery (outpatient, but still has to take place at a hospital due to blood loss risk), and I just don’t know how to handle 90% of my life, right now, because the pile’s getting too big.

hooooooooooraaaaaaaaaaaaaaay.

(surgery is going to be scheduled on Monday – I’ll know more details, then, I guess.)

Literally the LAST THING I thought would happen, again.

This month, I’ve experienced the following symptoms (moreso the past week):

  • bloating
  • migraine w/vertigo and nystagmus
  • unexplained weight gain in short period of time
  • mood change
  • lower abdominal cramping

I attributed them all to different things (mostly gas, exhaustion, and allergies). Then I silently freaked out about why the hell I’m gaining 10 pounds in 3 weeks when I’ve been eating LESS FOOD, and why I’m getting vertigo from allergies, of all things (because my ears have been popping and I’ve had drainage, so that’s the only logical thing – that it’s inner ear, right?).

I’ve been eating a lot of carrots, lately. This is relevant.

 

BEGIN TMI! (You’ve missed it. Admit it. You’ve missed me over-sharing about my bodily functions.)

 

Thursday morning, when I woke up, I had my usual morning whizz, and there was a bit of orange on the toilet paper. Like, just enough to notice, not enough to panic over. I seriously assumed it was because of all the carrots I’ve consumed, because it can turn your pee orange (let’s not even talk about the fact that my pee was electric yellow, like it always is in the morning).

Friday morning, the same thing happened. I panicked and thought I had a UTI, and that the cramping I was feeling was coming from an infection (since I just stopped antibiotics 3 weeks ago, it’s not out of the scope of possibility, though it’s unlikely). I had a doctor’s appointment about the vertigo/migraine (because from Tuesday night through Thursday morning, I was worthless from head pain), and I figured I’d just pee in a cup and find out whether it was something I should be more worried about.

Just before I left for my appointment, it happened again. I inspected it more closely (because COME ON, this is a medical mystery, and when have I been one to shy away from the gory details?), and realized with mounting horror that it wasn’t coming from my urethra.

There wasn’t a lot of it, but yeah, I was alarmed.

I went to the doctor and found out that my migraine was completely unrelated to my sinuses/ears, and my doctor didn’t even bring up the weight gain, which I wasn’t really thinking about at that point, but after he checked me out and told me I was fine (giving me migraine medication, because that sucker was BAD and I don’t want it to happen again), the dawning horror of what was happening washed over me, just like when I was 12 and first had spotting.

 

I AM ON MY PERIOD AND I DON’T EVEN HAVE A UTERUS.

 

Words cannot properly express how I feel, right now, so I’m not going to talk about how I feel. I’m going to talk about why this is probably happening, and what is being done.

I did call my surgeon’s office once I realized what was happening, and they paged Santa Claus (you know, the guy who REMOVED MY UTERUS), and I’ll probably hear from him today (he works all weekend, but was in surgery late last night, which is why I didn’t hear back, then), and will probably have to go see him on Monday, and lord only knows what will happen after that, but anyway, here’s what’s likely happening:

I have Stage III endometriosis. This means lots of adhesions covering lots of ground and inhibiting normal function of the organs (which is why my surgery required two doctors). This also means quite a bit of endometrium scattered around my abdominal cavity. They removed as much as they could, but endometrium is made up of a lot of little cells, and when they’re disturbed, they can really just settle back in and start growing with the help of regular hormones, just as they would inside the uterus. It would be a heartwarming story of resilience if it didn’t involve internal bleeding.

I still have one ovary left, so I’m not on any hormone replacement therapy. This ovary has been doing just fine at providing the necessary levels of estrogen and progesterone for me. While I’ve had some PMS symptoms and cramping in the past several months, it was never bad enough for me to do anything but laugh at how silly my body is for acting like it can still have babies.

When the vaginal cuff was sewn up (because my vagina is basically a sock puppet right now – there’s no cervix up there, they just sealed it off to make a closed tube), with the blood that comes from surgery, naturally, endometrial cells (which are freakin’ tiny) would have gone unnoticed.

They would have settled into the cuff area, possibly a bit lower (who knows? i won’t, until I have an examination), and over the past 7 months, with the hormones they’re getting naturally from the ovary, the progesterone would encourage growth of the lining; the shedding, up until now, has been so sparse that I haven’t noticed it at all. It’s just now that the endometrial patch has gotten large enough to produce visible blood when shedding.

This happens. This happens often enough that the nurse at my surgeon’s office was kind of cavalier about the whole thing. “Yeah, some women who’ve had bad endometriosis have been known to have bleeding after a hysterectomy…and this would have happened sooner if you’d been on hormone replacement.”

So there you have it.

I’m on my period.

Because my body is a drama queen.

Also, fuck Lyme. Because that’s the reason I’m in this mess to begin with.

FIN.

Remission?

Sorry I’m ending these posts with a question mark, but I honestly just don’t know what the hell is going on, right now.

Okay, so my run-of-the-mill Lyme test came back negative.

Before I celebrate, there are a few things I’m keeping in mind:

  • these tests are inaccurate as hell (see: test that said I was negative last year, when I had way more positive bands on a comprehensive test)
  • it can’t test for Lyme in my brain
  • I’ve been on so many antibiotics that the Lyme could be hiding and waiting for a safer time to come back
  • I know far too many people who’ve had negative tests and then have relapsed horribly

That second point up there is something we’re going to try to work on. I’m getting a neurologist referral, as I said (I need to call and remind them of it), and I’m going to let them know my symptoms, and see if an LP is something that should be done, as well as the MRI to test for damage.

I’m also going back to the Lyme doc in 3 months, and depending on how I feel, I’m going to get another basic Lyme test, to make sure the third point isn’t the case.

As for the first and last points – those are things that are unfortunately demonstrable and that I’ve seen too much of to be able to quell my cynicism.

 

So what I’m telling people, right now, is that I’m in “remission” – that, right this second, the test for Lyme is negative according to the popular method.

There’s anywhere from a 70% to a 95% relapse rate for Lyme infections, though, so you understand why I’m not throwing a party, even if that negative test is accurate at this time. To compare this to cancer, stage 3 ovarian cancer has a 70% relapse rate, and “distant”-stage bladder cancer (which is REALLY rare) has a 96% chance of killing you within 5 years (I couldn’t find a statistic for a recurrence or relapse that was 95% – they just straight up say “dead within 5 years”). So while Lyme may not directly kill you, this is why so many other people and I will describe Lyme in terms of AIDS-like activity. Once you get it, and it has a chance to get its claws in you, it never really goes away. The people with the lowest relapse rate are those who caught it early and treated it aggressively.

This is not to say that everything I’ve done this year is for naught. I’m not saying it was all worthless, nor am I saying I’m just completely done and omigod-doom-and-gloom. I’m not. I’m actually going to try to work a bit this summer (a couple of days a week), and I’m going to keep close tabs on how I feel while sticking as best I can to the gluten-free diet.

I’m REALLY hoping that most of my side effects in terms of my legs not working that well, and my endurance, have been because of the antibiotics, and me being off them will improve that area. Because I’m so tired of being tired.

 

As a side note, I’m house-sitting right now, and I have to walk around a good-sized yard to take care of chickens of all ages while also making sure a dog is fed and watered, all while cooking for myself, cleaning up, and taking care of cats indoors. This is my first day, and I feel like hell. I’m so sore that I find myself wishing I had some lortab to help me sleep, because my legs and particularly my Achilles tendons hurt so freakin’ badly. I’m also running a charity stream, and I have to be present in chat for most of my waking hours, and I’ve had to sub for two missing streamers, already (a total of 3 hours, because thankfully I’ve had help splitting the 3-hour slots), so I’ve spent much more active awake-time this weekend than I normally do.

I’m not trying to push it – the house-sitting being at the same time as the stream was total coincidence – and I might be REALLY sorry at the end of the weekend, but the fact that I was willing, even before I knew I was stopping the antibiotics, to come out here to the middle of nowhere and house-sit, should show some of y’all that I’m really not content with just sitting on my ass.

 

Anyway, we’ll see how I feel. I’m mostly concerned with permanent damage at this particular moment in time, but of course relapse is always at the back of my mind.

I’m just guarded.

…um.  *jazz hands*

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.