railenthe: (Default)
# LEG.

Leg. Leg. Leg.

Leg.

I don't know what I did to it. The worst thing is that now it is getting to both legs.

*Worst* on that pain thing. The one with the faces.

___

A long rooms beat meant hours on my feet meant woozy moments... Meant leg pain.

It buzzes and vibrates and *burns*, the burning the worst of all.

...at least I didn't imagine the tremor earlier. Apparently there really *was* a 2.0 in the area.

___

The Japanese Festival is going on this weekend. I'm not going. I'm stuck at work. Even if I'd managed to get the time off, I wonder now if my legs could carry me.

I still remember my first trip. The place was vibrant, with so much going on. Sumo, martial arts demos, and this enthalling entertainer we just call The Candyman. Part Street Magician, part Confectioner, part Comedian, you never knew what exactly to expect—well, except for the sculpted candy, and even then you spend the time wondering when, given the fact you never took your eyes off him, *he managed to make a candy koi.* (And they're delicious too!)
___
I miss events. I miss being able to get out. Now I can't even get to the grocery store without this pain. This... damage.

Earlier in the year, I was looking forward to autumn hiking. Now I can barely walk.

The doctors know fuckall. They drag their feet while I drag this leg behind me. I've lost all feeling in my legs more times than I want to admit to recently. They postulate everything from brain tumors to lupus.

I remember that my dad's doctor predicted his health would have him in a wheelchair by the age of 30. His doctor was wrong about that—it's a story he tells a lot, very "screw that guy!"—but maybe he was off by a sprog.

I don't know. I just want my legs back.
railenthe: (Default)
I got caught in the rain en route to my doctor's office and have such a chill set in that I was provided two things when I got there:


  • a heated blanket from surgical, and

  • instructions on how to ward off hypothermia.



The buses for once were PROPERLY chilled and I am still cold. The AC is off.

I am still ice cold.

I'm grabbing two blankets to start with and trying to warm up but it's an hour later and I'm still very cold and sleepy...

And I'm waiting for supplies for a very minor surgery on top of it (latex issue). My decision, it's covered, it'll solve one big problem, nothing can go awry unless latex which is why we didn't do it today.

My gut is still dumb. We're going to do some thing involving some kind of scanner and dyed food. I cracked a "Green Eggs and Ham" joke only to find out that THIS IS IN FACT AN OPTION.

Must warm up. Too cold.
railenthe: (Default)

Temperature: 55°F. Weather: Mostly Clear.

As usual we begin with a rant

Again, thank you very much, Father, for going back off the deep end and showing me just how callous you can be about things. It’s really telling that you were literally the last person to ask how I was after my procedures.

He didn’t show up to provide a ride, as he’d promised he would; luckily, I had already planned for this eventuality. My aunt also had a total flake moment; she’d sided with his “science is just a convenience and we don’t really need it” remark, and took personal offense that I hadn’t taken her offer of being over her place after the procedures and being there ore. First off, if she’d been where I had gotten my “sit around” ride, she couldn’t have babysat as she’d been doing all day; second, I don’t know the layout of her house; third, most importantly, she doesn’t have a car. The place would not have performed the procedure if I had not had an actual ride.

Both of those would have put me out $200.

Having backup in place weeks in advance wasn’t distrust on my part. It was fucking smart.

Meanwhile in Nowhereland

The procedures went, from what I hear, smoothly. The doctor had me knocked completely the hell out for both of them. I remember a needle of stuff in my IV that made my legs very heavy, followed by being wheeled into the room where the procedures and told to turn on my left side, but hey, what the fuck is movement, and, you know this bed is really feeling like a marshmallow like now?

The next thing I’m aware of I’m back out in the first room, the first doctor asking me how I was feeling.

I had…a lot of nonsensical gibberish there. I had no idea what was going on.

“Need a Coke?”

THAT, I understood. Three minutes into the Coke I understood things again. It was time for the information…

And the Verdict Is—

That I don’t have anything lethal! …that we know of. The doctor calls me with pathology results in two weeks.

That’s the good news!

The bad news is that SOMEFUCKINGHOW, on top of lifelong IBS I’ve acquired a case of GERD that has progressed so far that it has not only inhibited nutritrient absorption and retention in my body (hence the ridiculous weight loss), but also progressed far enough that it’s started wrecking the lower half of my digestive system, which is why the painful brick acid sensation in my guts—and the back spasms I’ve been having have been quieted by the Bentyl because they had nothing to do with my back: yes, it is in fact more of my gut attacking me.

My entire digestive tract has been reduced to one raw, throbbing mass of meat. We can’t call it an ulcer because that would imply a single isolated location of bad. It has no protection and can’t heal on its own. For the next five months I’m going to be on ridiculously strong medications that are going to reduce my stomach to a very, very non-adventurous blob. It’ll take five days for THOSE to kick in.

So far, so good…at least for the next two weeks.

railenthe: (Default)
 The pattern at work seems to have gone from wildly crazy busy to totally dead. Today was appeared to be a day off, but didn't happen. But, money comes in when once works, so I took it.
 
In the middle of a call today, I got the other line: my doctor has moved my appointment from the previous time to quite literally as soon as the place opens. I'm not sure if I should be concerned or not.
 
It's been difficult to get into the beat of prose lately. Things have been happening otherwise, not what was planned.
 
I need to get into gear. And hopefully before I get any crap news from my doctors.
 
railenthe: (Default)
  1. Second-guess your doctor.
  2. Second-guess your pharmacist.
  3. Second-guess your doctor again when you have a rotten reaction to a combination of medications.
  4. Second-guess your pharmacist again when they seem confused about you having a reaction in the first place.
  5. Call an unaffiliated pharmacist who also second-guesses your primary pharmacist…and their sources.

I was recently put back on a bunch of head meds by my shrink. Me being me—me being sick of being on so many meds—I reluctantly get them filled and look up any potential problems that there could be while I'm on them all. While I'm doing this, I see that there are more interactions than I care for listed between the three that are now the big drivers, plus a bunch of others.

Well, I take the meds last night, and wake up this morning the absolute sickest I have been since starting the entire regimen in the bin, right when we were trying a bunch of them and they weren't tuned right and interacting all wrong.

This is the second time this has happened.

It's 20 hours later and I'm still feeling sick. The plan now is to remove one of the pills each night and see if the bad happens without it. If it does—it's individual meds and a timing adjustment will do it. If it happens anyway, it's all of them and I've got to just drop most of them or I'm in BIG GIANT TROUBLE.

…I suppose it could be worse.

railenthe: (Fabulous As Usual)

Let's start with…well, how the hell does one describe THIS?

 

Yesterday I had a doctor's appointment.

Yes, I realize it seems that I start every other entry with that phrase, but I have a lot of doctors, and therefore there are a lot of appointments to be had half of the time. And I have to work to keep them all straight sometimes. It's a good thing that three of them are in the same building, or there would be some trouble. Anyway, the usual happened—poke, prod, measurements, weight's high, blood pressure's…actually, THAT was alarmingly low that day. We're keeping an eye on that.

I've mentioned once or twice that there's a problem with my system—peripheral neuropathy, that thing where your body's nerves are just sort of fried, misfire, and in general HURT A LOT even without provocation. The problem is, we couldn't figure out why it was happening, because I'm not diabetic. I don't have rheumatoid arthritis. I don't have MS. I don't even have your basic pernicious anemia, the B12 deficiency that would ALSO cause the problems I've been putting up with.

The last few months have been a game of Dr. House—work with a list of ideas, throw ideas at the list, throw as many medications as my constitution will allow at it, and see if it will work. Everything that we did that approach with had some problems with it—the annoying one, the time we thought it was shingles (excuse me, the time we HOPED it was shingles), the medication gave me the worst nosebleeds, and I had to drop it like a hot potato. It was unpleasant. What was MORE unpleasant was the fact that it took three instances of elimination process—dropping everything else I was taking at the time—to uncover it.

*record scratch*

I don't recommend that, especially if you're on a crapton of head-meds. It will Fuck You Up if you don't know what you're doing.

*music resumes*

Anyway, back at the doctor's office, I explain the NEW annoying crap that my system's been doing, plus the return of the stomach ulcer and the havoc it's wrought on my system in the interim. As I'm explaining the new neuropathy stuff, the doctor explains that Ulcer 2: Electric Bugaloo is because—LUCKY ME—I have severe IBS, and anything that could irritate my gut will therefore come with a free dose of the It Gets Worse trope. In my case, that means the ibuprofen that I had to take after the time I got shot wrecked my stomach a bit more hardcore than it would have otherwise. All I really can do right now is avoid any stomach irritants until it heals.

Oh, and THAT'S the good news.

Next thing that happens, doc orders me to stretch out on that cold table thing and starts prodding at places
To my shock, EVERYTHING IS RAW. (Especially the ulcer zone.) The bad leg goes twitchy when he gets to it, just like it did at the neurologist's office, which I explain when he jumps—it's a fairly violent twitchy, like if everything in the leg was a joint and he hit all of it at once with one of those reflex-hammer-things (I have no idea what those things are called).

It's at this point that the doctor informs me that now we KNOW what we're dealing with, and that there is no way my insurance is going to cover these medications.

"What are they?"

"Gabapentin, Neurontin, that sort of thing."

Fuck, I think. "That sounds like fibro meds."

"If I were you, I'd think about filing for partial disability, or medical, both if you can manage it."

Fuck, I think again. "What if I did and it didn't work?"

"Keep at it, make'em tired of seeing you, and as SOON as you even get a MAYBE," he says, "get back in here, because if we can't get this managed, it WILL get worse."

"Ain't gotta tell me twice."

So, what Friday boils down to is this: the neuropathy diagnosis was an UNDER-diagnosis with a dose of optimism, hoping that it WASN'T worse than that. What we're actually dealing with is fibromyalgia, which is a step ABOVE your garden-variety neuropathy—for one, it doesn't take the diabeetus to show up. Medicine knows jack shit about it, or what causes it, or why it hits who it hits. It doesn't kill, but boy will it make your life hell.

But there is an upside:

railenthe: (Default)

Friday morning began with me rolling over and smashing the front of my phone with the palm of my hand. The phone’s face is made from Corning-brand Gorilla glass, though, so all that was doing was—actually, it wasn’t making my hand sore, I couldn’t feel my hand. I’ve come to terms with that recently, it seems that 90% of the time, I can’t feel my hands in the morning. Since it wasn’t damaging the phone or my hand (I hoped), I kept banging on the front of the phone until the alarm stopped. I didn’t know if I hit the snooze button or the dismiss button.

I’d spent the entire week up to that day like a paranoid ungulate, chewing over the same terror cud over and over—what if it’s cancer? what if it’s lupus? what if it’s some hitherto undiscovered SUPER LUPUS? what if it’s none of the above and I’m some new freak of nature?!

I stopped the train right there and made a glass of cranberry soda. And then another. And then another. And then for good measure, I had one more. Because frankly I was freaking out. Then I got off my ass and got to the doctor. By this point one arm was flipping between on fire and “where the fuck is it,” but I brought things to read and do so I wouldn’t have to think about it.


The doctor’s office was damn near vacant, considering that I thought I was running late—I was not, in fact, I was running early—and I got in right away. I explained what I was in for, pulled out my phone to browse news links on reddit (and, let’s be real, look at cute cat pictures because when you’re feeling bad, cats) when the doctor came in with a handful of papers.

“Do we know what’s caused it?” I ask almost immediately.

His response?

We’re stumped.

We can’t find a cause for the neuropathy. We can’t do anything but treat the complications of the neuropathy as they come up. And apparently if it progresses long enough I might have the loss of digestive function to look forward to. YAY. Basically, deadened nerves would paralyze my gut and bladder, as well as making my arms and legs more often than not numb and/or painful. ANOTHER sweep of the blood work ruled out it being caused by any of my meds. This also fails to explain the blisters inside the sinuses and the roof of my mouth. To turn bad into worse, this is affecting my leg as well—after all, that was where the FIRST bad nerve came up, back when I bricked the damn thing three years ago now. In fact, I can’t help but wonder if that’s what set this whole thing off.

Before you think I’m going to stand idly by and just take that, I’m planning on fighting this shit—there’s got to be something out there provided by Mother Gaia to fight this shit, and I plan on finding it and taking it, regardless of the risks. I DO NOT plan on being on incontinence wear by my thirtieth birthday (the neuropathy is moving fucking fast).

We are now down to House-ing it: We’re taking everything that my system is torturing me with, treating it individually, and seeing if it does any good—except the neuropathy itself, since the one prescription medication approved to treat that is something that I can’t take with my current medications. Killer interaction, you see. Next on the list is an antiviral—because the blisters apparently kind of sort of behave like shingles. If it doesn’t work, we’re back to square one.

railenthe: (Default)

Actual content--interesting things, 100 Things, challenges, fic, original content, basically me NOT being a reclusive dick--will return on Saturday, October 19th.

Why then?

That's a day after I get back from my NEXT doctor's appointment.

The fact is, things keep getting worse. My leg has flared to the point where it feels just like the beginning, the muscle having wasted to the point where it is visibly thinner than the other leg. My arms and legs are a searing, burning pain throughout half of the day, my eyes are a painful, scrapey mess, and--the most annoying thing right now--motherfucking ESTROGEN. My brain is so scrambled, it's like the brainzaps are the norm now and sudden bursts of clarity are the brainzaps now. Friday, I'm hoping to get some answers.

I WILL answer to comments dropped here--[personal profile] kuro_pantsu, we need to work on a schedule for braaaaaaaaaains the thingy, and I figured out why my brain couldn't figure two things at once--that cocky bastard WAS a vet--FOR THE OTHER GUYS.

[personal profile] alkonost_storm, when I get back, we can eenie-meenie-minie-moe any RP to start up again and I am NOT allowed to argue. (TL;DR--I'm your bitch for the evening!)

EVERYONE ELSE whose handles I haven't memorized? SEND WHITE MAGES. ALL OF THE WHITE MAGES. EVEN THE ONES THAT AREN'T SO GOOD AT IT.

railenthe: (Fabulous As Usual)
The good news is that we've got more blood work results in from the doctor today, and the good news is that I've tested negative for all of the factors for rheumatoid arthritis (RA). That's a breath of relief if there ever was one.

The problem with that is, that is one of the things that could be causing this peripheral neuropathy nonsense, and with that one ruled out, that means that there's something else still there that could still be causing it, as this is the type of thing that doesn't just pop up out of nowhere without provocation.

See, I've also tested negative for any blood sugar abnormalities (diabetes) and negative for any anemias that would cause this. That means that the things that would have caused this would be something else, possibly bigger and badder.

I get to go in to the doctor and get poked and prodded at more in two weeks. Whoo...
railenthe: (Default)

So apparently, the labs aren’t done yet. They tell me it’ll be about a week. However, we DO now have a name for my arms and legs going numb/burny at random moments. It’s this stuff right here. The kicker is, I don’t have diabetes mellitus, so there’s no apparent reason for this to be happening to me.

So now we just sit and wait for the labs to come in.

railenthe: (Default)

I know I’ve been a little antisocial lately, so here’s a friendly fennec fox to break the ice.

Anyway, I got to the doctor today, and told him that yes, I want the Topamax for my migraines because it’s making me functional; yes, I know that it’s not a good idea to take medicines prescribed to someone else; yes, I was taking the risk anyway because otherwise I was intentionally overdosing myself into a torpor to get a modicum of rest; and yes, I know there would be bloodwork involved and GUESS WHAT, I’m already fasting so come at me doc-bro.

I also explained the annoying as hell blisters that I’m getting in my mouth, the odd lesion/laceration that’s cut its way around and into my cheek outside in, the weird-ass blisters and raw areas, the total numbness that my feet and arms are getting, and the fact that three hours of last Saturday went missing. Oh, and the stupid knee, and waking up and my leg being as responsive as a log.

We’re looking at a couple forms of anemia to be the GOOD!bad news that we find. I say that because the OTHER thing that everything matches up with IS IN FACT LUPUS and we’re doing all this blood work to actively attempt to rule THAT out.

I’m thinking protein shake then bed.

Hmm...

Aug. 7th, 2013 07:27 am
railenthe: (Default)
According to my pops I've lost a noticeable amount of weight since Margarita Mondays (family gets blazed together) started.

I'm guessing it's because I've finally found a solution to the leg and migraine pain. I didn't notice: staying off scales until I can afford one that doesn't come uncalibrated when barometric pressure changes.

I have been feeling a hell of a lot better. Even the near constant vertigo and nausea has let up—no more going 15+ hours without food then eating everything at once.

I've been conflicted—I mean, until a month ago I was a teetotaller where this herb was concerned, and now, it's like my world's been flipping right side up—you know, because of the nausea fix.

I'll figure it out later. Right now I'm going to enjoy not being in pain.
railenthe: (TEA)

My name is Railenthe.

I have an eating disorder.

I am not my eating disorder.

But you could’ve fooled me.

CUT FOR LENGTH. )
railenthe: (Default)

I occasionally jump in on things that my friends on Facebook have weighed in on. Today, a person was lamenting that their now ex-girlfriend has apparently gone on birth control (referred to hereafter as BC) when she apparently wasn’t before. The original poster seemed to be, to put it bluntly, rather butthurt about the whole deal: he bought into the conservative fallacy of being on BC = promiscuity.

In all likelihood, the odds are she was on it in the first place, so I took a devil’s advocate position on the whole thing, explaining that hormonal contraception is used not only for contraception, but also a form of HRT (Hormone Replacement Therapy) for reproductive issues.

I for one went on birth control around the time right after seeing my now on-again first boyfriend: mostly because it would give me relief from the migraines. (What they don’t tell you about it? YOU GET MOAR BEWBS.) The fact that it gave me free license to jump his bones (didn’t happen, I kept getting cockblocked) was a bonus.

The point is, there’s more than one reason to go on BC. And that decision should be up to the woman in question. NOT a bunch of white-haired old men who think that the body has ways to shut down unwanted pregnancies as in the case of incest and [trigger word redacted]. The fact is, most of the government trying to regulate what we do to our bodies are men—who therefore have a barely-working knowledge of how making babies work in the first place—Todd Akin, anybody?—and don’t seem to bother with science at all. Look at the conservatives’ positions on the subject, and you see a lot of DIVINE VIRTUE and GOD’S WILL and ABOMINATION AGAINST NATURE and AGAINST THE HOLY WORD!

You don’t see…what’s it called—oh, right. SCIENCE. You don’t see the medical experts’ views. You don’t see doctors. You don’t see internists. YOU DON’T SEE WOMEN. Or at least, you don’t see women when you’re not looking inside of Mitt Romney’s infamous binders. Pretty much, the one segment of the population that has anything to do with this whole thing is being silenced. The right to do to our bodies what we want to do, even in cases of improvement of our own health, we’re stuck under the thumb of conservative pols and the damn Church.

And I’m not comfortable with a bunch of old men who won’t let girls join their club trying to tell me what to do with my own huevos internales at every chance they get.

An ancient institution should not be taking the place of a trained medical professional. Church, I don’t turn around and tell you how to massage your prostates. Don’t tell me how to make my ovaries behave, and DON’T go around sticking lighted wands all up in the Promised Land just because you think that a cluster of cells that has not yet even developed a rudimentary nervous system should have sole control over what I do.

That isn’t pro-life. That’s pro-birth. After the birth, where are these people? “Oh, we’re not going to provide assistance to you, you should have known better than to get pregnant in the first place. Oh, and spermicides and condoms and stuff like that is also the devil so no you can’t have it unless you want to go to hell and you don’t want that now do you, silly woman?”

We’re not baby machines. Stop treating us like baby machines. Get out of our laws. For fuck’s sake, start treating women like PEOPLE, you old dustbags. Until then, I’ll just travel about until I can get the medical help I need for my hormonal issue.

railenthe: (Noes)
  • ANNOYING DAY OF HEALTH STUFFS.
    1) Up five pounds. My reaction: BLAH
    2) Found out Marilyn Monroe, THE standard, was a size 14. My Reaction: feeling less paranoid.
    3) Find out I have no idea if I'm eating too much or not enough for my activity level. Reaction: *runs around punching air and generally going "RRRGH!"
    4) Take measurements and find out that my body fat percentage is right outside the 'athletic' range at 24%. Reaction: *lost*

  • but the BMI (which is admittedly NOISE) has me at obese still.

This, friends, was my day.

I woke up and busted the hell out of my leg—again—and decided “Screw it, I’m not really doing much of anything today.” I got up and had a late lunch/breakfast of fruit, cheese, and summer sausage, did some pushups, did nothing else really, logged food, and—as the stuff above proves—obsessed over numbers.

Sometimes I can’t help but wonder if I’d have this problem if I was a guy. Constantly checking the scale, counting every calorie, obsessing over whether or not the fact that I moved a piece of furniture should count as workout minutes.

I’ll admit it—this is unhealthy.

I’m back to where I was in high school—obsessed over every little thing like when my grandmother convinced me that, at 110 lbs, I was a fat cow.

I shudder to think of what she’d say to me if she saw me here at 165lbs.

I hate being obsessed with these numbers.

But they were being foisted at me as recently as a week ago, when I went in for my crap knee and was told—again—by my doctor that he was concerned about the 50 lbs I’ve gained in the last five years.

If you look in my closets, you won’t find uniforms of any sort—cheerleader, band, formal server—nothing like that. I don’t have a series of dresses that I’d like to get back into. I don’t have anyone I’m trying to impress. Or trying to prove something to.

And that is why the fact that obsessively measuring every crumb, every gram of sugar, every little bit of fat that goes into my system, is so incomprehensible to me. I keep doing this and yet I don’t really have a reason to.

It is infuriating.

It is frustrating.

And I can’t stop.

I’m backsliding.

And it’s going to take a while to work through it.

Now I’m going to do a few things that don’t involve thinking about weight, or body parts, or numbers.

Because if I don’t I’m going to give myself a splitting headache.

railenthe: (Noes)

“Wow.”

“Yeah.”

“Crap.”

Three short words in a tiny doctor’s exam room mean much more than I though they would.

(MEANWHILE IN TEPHIRETH MY BODY...) )

railenthe: (Noes)
I seriously wish I had a better handle on this thing sometimes. A perfectly serviceable night out almost went pear-shaped for me in a hurry when a sudden stressor kicked my paranoia back up. It wasn’t even a specific paranoia, just that vague sensation of there being just “too much stuff going on right now too fast to process oh gods please get all of this out of my head.”

I wish I could explain it better while it’s happening but when it’s happening I just want something to PAUSE EVERYTHING so that I can make my head do something that it’s supposed to do.

I guess I wasn’t quite ready to get out of the house yet.

You can skip this if implication of r—e is a stressor/trigger of yours. Suffice it to say BAD DAY. )

railenthe: (TEA)

So I think I’ve figured out how I’ve pulled that muscle in my arse. Mainly because I just did it AGAIN.

I finished futzing around with the space bags and let me tell you the space get was A-MAZ-ING. But the compression of size doesn’t do anything for the weight of the stuff. I finished hauling my tiny heavy linens and lay down for a second and a half to get my breath--

*Ka-chr—TICK*

“OW FUCKFLANS!”

Springing right the hell back up? BAD MOVE. Flat again in a beat.

“…great.”

This is the part where I vote in favor of coconut milk and cookies.

*slump*

Aug. 4th, 2012 12:39 am
railenthe: (Wat.)

So I get home from the doctor with some interesting news

First, I find out that my immunity is located just barely on the right side of “properly functioning” and so we’re mot worried.

Second, I find out that I have high cholesterol.

 

Wait, what?

 

Yep I got high cholesterol. Well technically, if we’re being totally  honest, I have borderline high cholesterol. But it’s FOUR LOUSY POINTS off from being high on the chart, so yeah, we’re operating on the assumption that we’re in ‘high’ mode. I’ve got to completely overhaul how I eat, and it’s in my best interests to get back to working out.

I can’t cut down on the meat as much as I’d like because I need the protein to rebuild my bum leg. So I’ve got to do more exercise, cut down on the pizza cheese bread, and I’ve begun taking red yeast rice to help knock it back down.

 

OK, year—what else you got?

January 2025

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