Rose
14 April 2014 @ 05:58 pm
 
“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.”
- Lance Armstrong

All right.  This is the topic I knew had to come, and this is the topic I knew I'd have one of the hardest times writing.  I'm shaking a little even trying to think of it.

But it has to be written.

I had no pain killers for the first several years after I was diagnosed with Lyme.  I had tylenol.  Ibuprofen.

That was it.

It never helped--and I mean those over the counter pills never helped at all--but I coped.  Mostly.

Except over time, the pain got worse.  It's hard to describe all of it.

Intensity-wise, I can say that I was on a very strong prescription pain killer, and it did not touch the pain at all.  Part of that may have been my fault; I never took the full dose as written, especially when I learned some people were spreading rumors I was a drug addict.  And yes, my doctor yelled at me for not taking the full dose.

Eventually, I had no choice but to take the full dose.  Thing is, though, I have this neat genetic quirk from my father's side of the family.  It does many things.  One ting it does?  I can't get drunk, or even tipsy, no matter how much I drink.  The one time I was drink was because my appendix was about to rupture and my system went haywire.

More to the point, it means my body gets, well, sort of "used" to pain killers quickly.

And then they stop working.

The pain was bad enough that when the prescription pain killer I was on stopped working--which neither I nor my doctor had realized yet--I collapsed, literally, on campus, and had to be taken to an emergency room.  And I thank God that the doctor who treated me knew about Lyme, figured out what happened, and got the pain under control until I could see my normal doc.

That's intensity, though.  What's it actually like?

When bartonella flares up, I barely sleep at all.  I might get six hours of sleep in two days.  Medications do nothing to help.

When I walk during that time, it feels like I'm constantly stepping on shards of hot glass.  My lower leg muses ache constantly, as do my arms, and nothing touches the pain.  Nothing.

When the babesia flares up, I sleep all the time and I just ache.  All over.  And the best way to describe it is that I feel sick.  Puny.  I want my comfort things; my dad reading to me like he did when I was a child, my cat, my own bed, my favorite blanket.

And the Lyme, well.  The Lyme is aways there.  I'll go into all the symptoms of it in another post, but to give you an idea now?

I always--and I mean always--feel like i have the flu.  Which is extremely dangerous, because when I actually get the flu--which I do most years, because I cannot take the flu shot for allergy reasons--I don't notice that I'm sick until the flu is in a rather advanced stage.

Which is how I ended up with pneumonia this year, by the way; didn't catch the flu signs almost at all, and the flu weakened my system and went into walking pneumonia.

My joints ache all the time, especially my hands, my back, my right hip and my right knee.  My right knee actually gives out frequently which means 1) I fall a lot, and 2) I now have to use a cane.

There are nerves which run up the back of your neck and over your skull.  I feel them more day than not, and I feel them because they're inflamed and causing me such migraines that I feel sometimes like I must be dying.

And the inflammation.  The inflammation is horrible.  Lyme eats up magnesium like it's candy, and after having it so long, I finally am suffering the effects.

In three days, I gained ~35-40 lbs, all water, due to inflammation.

I can't just exercise and eat healthily to lose the weight, either--because, after all, the cause is the lack of magnesium.  I give myself shorts, and I'm going to have IVs of it.

Both the shots and IVs hurt.  A lot, really.  But I don't have much of a choice.

I don't look fat, the way the inflammation spread out.  I know this.  But I don't feel like I'm in my own body any longer.  And that's one more thing that Lyme has taken from me.

Some of the pain is emotional, not physical, after all.

I could go on.  For the Lyme, at least, I'll make another post with a list of all Lyme symptoms, highlighting the ones I have--and, as I'll mention again in that post, if you have 20 or more of the listed symptoms, you should see a doctor ASAP about Lyme.

But there's a fine line between sharing and complaining, and I'm working hard not to cross that.  So I'll end this here.

For those of you who've read this post, though?  Thank you more than ever for doing so.

[Words: 890]

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Rose


“It would be ridiculous for me to say I am unlucky, but, like any other family and any other girl, I've had my ups and downs.”
- Poppy Delevingne

Ahahaha, I say, because yes.  Though maybe not in the way you're thinking.

Penicillin and its variants (amoxicillin, bicillin, etc) are the "to be tried first" treatment for Lyme.

Except I'm allergic to all those medications.  One doctor I had (and hated) wanted to see if I was "still" allergic, as I hadn't had any of that type of medication for 15-ish years.  He wrote a script for a pill of penicillin and told me to take half.

And, just like when I was a child, I broke out in a huge rash and had to immediately take benadryl.  I chewed him out, too, and told him I did not like his attitude towards my allergies, nor the way he implied he wouldn't continue to treat me if I did not do this trial.  I also asked my parents to let me switch doctors; my mother would not let me until this doctor left the practice in DC, where I was living at the time.

Instead, I take minocycline.  But the thing is, you can't JUST take medication to kill off Lyme.  You have to take medication that burst the cysts, or protective bubbles around the Lyme spirochetes (aka bacteria), as well.  Or the medication to kill the spirochetes cannot get to said spirochetes.

Plus, please remember, I do not just have Lyme; I also have bartonella (the one that could kill me) and babesia (the one like having malaria).  These three infections work in a very strange way, so that when one infection is strong, as a side-effect, it "protects" the other infections; it makes it harder to kill them off.

So, even though a medicine to kill Lyme may technically work, if the bartonella is too strong, there won't be any (or any good amount of) die-off from the Lyme.  If the babesia is too strong, the bartonella cannot be killed off.  Etc.  It's a nasty, pain in the ass cycle.  And I hate treating the babesia more than anything, as it results in horrible, chronic sweats and hot flashes.  I can have them for up to a week at a time, and in addition to being horribly hot and sweaty all the time, it leaves me utterly wiped out.

Not good for attending classes.  Or having...any sort of a life, really.

But more of that for the co-infections post, I think.

[Words: 422]
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Rose
When it comes to certain math problems, I always take over the tutoring for my mom.  Mostly, parts of Geometry, parts of Algebra I, and all of math that's taught after those.

Student tonight is studying for a math test in Geometry.  First of all, he's studying the whole chapter in one night, after running for track.  He's tired.  He needs to come for two nights to study a chapter--which my mom told him before.

But he's here for one.

There's one lesson that he just doesn't get.  Can't remember the equations for special triangles.  I have spent over an hour working on them with him.

He went to pull out his calculator for 7 * 2.

I snagged it out of his hand.

Went to grab it for 2 * 20.

Again, I took it, and this time I kept it.

So I'm watching him labor over really, really basic multiplication and division problems and finally I ask, "Do you now your multiplication factors, STUDENT'S NAME?"

STUDENT'S NAME: "Nah.  They started to teach them to us in 3rd grade, but when we got to the 5s they said, 'we're going to do more advanced math and give you calculators now'.  I don't remember the ones we were taught anyway."

Me: "*STARES IN HORROR*"

STUDENT'S NAME: "I kinda think I should learn them, at least before college."

Me: "I...yes.  Yes, you should.  In fact, the next time you come, which will be as soon as possible after the test tomorrow?  We're going to start working on them, and keep working on them until you have MEMORIZED all factors for 1-12."

STUDENT'S NAME: "ALL IN ONE NIGHT?! *horrified*"

Me: "No.  No, I think we'll split it up a bit.  *goes to find her mother*  Uh, Mom?  Did you know STUDENTS NAME doesn't know his multiplication factors?"

Mom: "*almost chokes on absolutely nothing* You're kidding."

Me: "Not so much.  *relays story, so her mother can join her in hating the public school system*  I'm thinking the next thing that needs to be done is for him to learn them."

Mom: "You're thinking right."

Just.  I am so angry on his behalf right now.  This work that's taken 90 minutes would have taken...at least no more than an hour, maybe less time, even, if he new basic math skills.

And he doesn't.  Because they want him to rely on his calculator instead of actually teaching him the things he should know.

I am so angry.

And I still won't let him use his calculator when I'm working with him.  When he takes the time to think, he pretty much does come up with the right answer.  But watching him do it is kinda painful, because you can see that he's dredging something up, or a process of thinking up, that he hasn't had to use in forever.

Painful, but good for him.  Which is why my mother, in another room, is holding his calculator.  (I am making him finally work three problems of the type he's having issues with on his own, and if I sit in the same room with him, he won't put energy into actually working them.  He'll flail and say he doesn't know or is too tired.  Funny enough, when I refuse to accept that answer, he suddenly has enough energy to eventually work it out.)

I suspect he's trying to play me.  But hey, I get paid for all the time he's here.  It's his free time that's being eaten up without pay, not mine.
 
 
 
 
Rose
07 April 2014 @ 10:55 pm


“We are not people who touch each other carelessly; every point of contact between us feels important, a rush of energy and relief.”
―Veronica Roth, Allegiant

There are so many symptoms of Lyme, and really, that's a post unto itself (and one I plan to make).

But one of the hardest to deal with is the skin pain.

All the time, my skin feels--wrong. Too tight, slightly burning, too hot--it hurts, but it doesn't just hurt. Or rather, it doesn't hurt in just one way. It hurts in various ways, and it's also uncomfortable in various ways, and tuning it out took a great deal of practice.

It also means that I am, for the vast majority of the time, denied one of the simplest (and far too frequently over-looked) pleasures of daily life: touch.

Not just touch of another human being, but touch in general. I turn on the shower, step under the water, and I try so hard to enjoy the feeling of the heat, the light pressure of tiny droplets washing over me--but instead I think of grains of rice pelting me.

Imagine that, and think of a shower of it, at a constant pressure.

Do you see why I almost always take very quick showers?

Buying clothing is a miserable experience, more often than not. An article of clothing may fit perfectly, flatter me, and be something I really do want--but if it rubs the wrong way (and most of the time I won't know until I try a piece of clothing on if it will or won't do so) then it's back onto the rack for that particular item. It can take hours.

I almost never wear jeans any more. Or trousers at all, really. Not because I don't like them, but because the way they rub my legs when I walk is a constant distraction that has me gritting my teeth.

And yes, there is human touch. My father patting my back as I go to bed for the night, like he has since I was an infant, and kissing my forehead. My mother holding me close, having washed her hands and face, changed her shirt, and brushed her teeth just for me, so I don't have an allergic reaction to the tobacco from the cigarette she'd just finished smoking. Hugging my dear friend tightly without thought--or my friend doing the same, not hesitating and asking if it's okay--when I see him or her, or when one of us is upset.

All of those things--and I don't mean just human touch, but I mean that the most--are no longer just a part of my life. And now that they are not, I realize--especially with human touch--how much all of it mattered.

My friends care. Many know how I am, in this area, and they ask if it's okay to hug me before doing so. (My heart breaks that they have to do so, but I am grateful that they remember to do so. It is different than them deciding for me that they will not hug me to ensure I have no pain--but that's also another post to come.) I treasure each gentle touch and wish, on one level, that the person hugging me treasured it as much as I do.

I know it's unlikely that he or she does--you don't know what you have until it's gone, and all, and I don't want any of my friends to experience losing this grace, this gift. The feeling of hot water pouring over your body, trickling down your curves and angles and soothing away the stress of the day, the simple fun of updating your wardrobe...

Not even thinking about sticking out your hand to shake someone else's, or to wrap your arm around their body. Not having to think about them doing so in return.

I've lost a lot, and I mourn all of it. And I don't know that this is what I have the hardest time with.

But it's in the top ten, yes.

[Words: 674]
 
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Rose

"Eat to live, don't live to eat."
-Uknown
Yes, this question is definitely relevant. And I will say at the start that I am very, very bad about my food restrictions. It's the area in which I rebel the most. I know I shouldn't; I know it's foolish.

But. I do.



First, I don't have much of an appetite...well. Ever. My stomach has shrunk as a result. So I never eat much at one time. I've tried, and every now and then I manage to eat what other people view as the correct amount of food for a meal. But mostly I graze lightly throughout the day.

That said...on to the restrictions (and the things I should eat, but kinda have a problem with.)

No Gluten: The problem with this one relates directly to the Lyme spirochetes (aka think of bacteria as a synonym for spirochetes). Once gluten is consumed, it forms a sort of shield, which hardens very quickly, around the spirochetes. This means the medicine I'm taking to kill the Lyme spirochetes...can't easily get to them.

Problem: I like bread.

I have a bread machine now, though--though it's at my apartment--and that should help somewhat. I do love millet bread, but it's hard to find, and it--like many of the better-tasting gluten-free breads--is ridiculously expensive. The nice thing about the bread machine is it also makes pizza dough, so hey, that rocks!

It's still incredibly frustrating.

No Sugar: Yeah, I am horrible at avoiding this one. I mean, I don't consume a lot, but when I see something I want, I have it. See, again, small appetite, rarely desire food of any kind, etc.

The problem with the sugar is that the Lyme gobbles it up. It's like pouring fertilizer onto the spirochetes. So I'm much better about avoiding sugar than I am at avoiding gluten...but I'm not perfect.

If you had to balance as much as I do, you'd be imperfect at some things, too.

Eat Up That Animal Flesh!: Protein. Protein is good for you! And I eat eggs. And some fish. And milk-products. And nuts, I'm great with walnuts and cashews!

But you really are supposed to have a great deal of protein in your system if you have Lyme. For example, if you're a vegetarian with Lyme? Expect your doc to try and convert you to some form of meat-eating again.

For me, the problem is this: I hate how most animal flesh tastes. Can't stand beef or pork at all. I'm not thrilled with fowl, but I manage it sometimes. Seafood, eggs, I can eat those.

But most animal flesh--sometimes even fowl--tastes rotten when I taste it. It's not! I know the meat is perfectly good.

But it doesn't taste that way. Apparently, it may have something to do with a nerve being damaged, but they're not sure. So, basically, I woke up one day and took a bite of a ham sandwich and almost threw up.

That was not a fun surprise.

Conclusion: There is literally no area of my life that is unaffected by my having these diseases. Having said that before, I don't think most people reading this are surprised to see that yes, the area of what I can/should/shouldn't eat is affected by Lyme et al, too.

But, y'know. In case you haven't been about, or not reading: When I say it affects every area, yeah. I mean every one. Literally.

And yeah, it does, in fact, suck, but. You've got to get through it.

(I've got to get through it.)

[Words: 594]
 

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Rose

You can't hate the roots of a tree and not hate the tree.
-Malcolm X
I feel like this entry should be more exciting than it actually will be; maybe it's the phrase "origin story" that does it. To me, that brings to mind science fiction, comic books--you know, superheros. And while it's true that, like Spider-Man, I was bitten by an eight-legged bug, I can't say I ended up with any great powers.

Though I did get the great responsibility, so maybe the phrasing fits after all.

I mentioned this briefly in another post, but I'll write it here on its own with a little more detail.

We don't know when I was first infected with Lyme and the co-infections for certain; I have no memory of a tick bite. But this isn't that surprising, for a few reasons. First, lots of people, if they know anything about Lyme, know that a sign of infection is a "bulls-eye" shaped red rash around the bite site. So, in theory, even if the tick got knocked off, the rash would still be there, right?

Problem with that is that studies have been showing evidence for the possibility that the rash is not a sign of infection; it's sign of re-infection. In other words, the first time you are bitten by a tick and infected with Lyme, no rash--but if you're bitten again by a tick that transmits a strain of Lyme Disease to you, your body reacts to this new introduction. And voila! A rash is born!

In my case, though, there's another issue that comes into play: based on the severity of my condition, I was probably infected when I was still young enough that my mother helped bathe me, at least for the back-washing bit. Based on reactions my skin has had over my lower back, the doctors suspect that was the site of infection.

Well, I can't see my own back.

And my mother's blind. And yes, she carries guilt within her every day that she missed the tick, even though she shouldn't. (Several sighted individuals could easily miss a tick bite as well, especially if there is not a rash; we are talking about critters that are literally smaller, at some stages, that the period at the end of this sentence. And it's easy enough for them to be brushed off even after they have bitten--and infected--you.

So no, I don't know exactly when I was bitten first and infected with Lyme, though I do know that in spring of 2008 or 2009--I would have to check--I was bitten by a tick while traveling through Virginia. And yep, I ended up with the infamous rash. Still, by that time I'd been sick for years--more than we even realized at that time.

I can tell you about my diagnosis and the events that surrounded it, though.

I started having health problems in fourth grade. Doctors could not figure out what was wrong with me, and for the next three years, I spent about a third of each school year in the hospital. My parents were told not to expect me to live to turn 13 when I was 10; I found this out much later, but I still wish I knew the name of the doctor who said that to them. He nearly destroyed them.

And then, at the end of seventh grade, I seemed to improve--I seemed to improve after years of having several sinus infections. In other words, I was on antibiotics very frequently.

The same kind that kill Lyme.

And eighth grade was wonderful; I shone. My health didn't get in the way of my academic performance. I still treasure that year, in many ways. (And yes. I had been mocked by various students at my Catholic grade and middle school for being absent so often and the way it affected my grades; when I finished that year with a) a 4.0, b) grand prize in the regional science fair, c) placing in city (both my team and as an individual) in Math Counts and d) being selected for another state-wide math competition--and my teachers, who had watched me be tormented by for the past three years, made sure the other students knew about these things? I did enjoy the expressions on several faces. I am only human. And I had been mocked and isolated, treated like an idiot, when my brain was fine. My body just was bailing.) So it was nice to see some shocked expressions. It was nicer, though, to see how proud my teachers were.

And I thought that was it.

I started high school at the local Catholic high school; during both my freshman and sophomore years, I was asked to tutor students by a variety of teachers in different subjects, and I placed in the math competition again. I had all A's, and whatever standardized test we had to take any given year, well, I mostly found the experience relaxing.

But I didn't do anything else. Anything else. Part of this was because my mother, as said, is blind, and my father was often out of town on work; the high school was 20 miles away, and most of my fellow students lived in the larger city it is located in, rather than the suburb my parents' home is in. But that was okay, I told myself; I'd get my license soon enough, and that would change.

The part that I--and my parents--ignored for as long as we could, though, was...that really, even if my mom could have seen to drive, or even if we had lived closer in the larger city, I probably would not have been doing much. Because I was so tired all the time. I came home from school; I slept; I woke up, did my homework, and went to bed. The very few times I did think about how tired I was, I just reminded myself I was tutoring any given number of students most of the time, rarely all in the same subject, and of course that would wear me out.

I was an idiot.

And then, in January of my sophomore year, my right knee started to hurt. At first it was a twinge; it rather rapidly became bad enough that I ended up in a wheelchair at school, because walking back and forth between buildings for classes had become something I was no longer capable of doing.

I was lucky, I guess, to have the GP I did, though; he had heard about Lyme, read about it, and knew that the most common test used for it (there are newer ones now, thankfully), the Western Blot test, had a 70% false negative rate. In other words, 70% of the people who had Lyme would test as not having it, when that test was administered to them. He knew the CDC said that you had to diagnose by symptoms, as a result.

He was very quiet, going over all of my symptoms. And he told me, after a few moments--and my mother--that I might have Lyme. Which I'd never heard of, beyond knowing that Amy Tan and a member of The Real World both had had it. My mom knew ever less.

My GP said he was going to put me on the first course of antibiotics for it, which would also tell us if I had it for certain. You see, when the Lyme bacteria dies off, it releases toxins into the host body--my body. The toxins cause many things, but the main one is, simply, pain. A great deal of pain. Extreme pain.

So, he said, he thought I had this, but I was to take just one pill from the script he was writing that Friday night. He wanted to see me on Monday to know what my reaction was.

I was in so much agony on Monday that I could barely make it into his office; the weekend had consisted of me curled in a ball, sobbing, because I couldn't not; that was the kind of pain I was in, suddenly. I could not even manage to actually sit up in the waiting room of the doctor's office; I had to immediately be taken back to an examining room to curl up on the exam table.

"Well," said my GP when he came in and looked at me. "The good news is, Lyme won't kill you."

"So what's the bad news?" I croaked.

"...The bad news is, it won't kill you."

You shouldn't have to hear that at 15 and know it's seriously meant. But in a way, it almost didn't matter, because at that point I didn't yet grasp what he meant. What all of this was going to mean. I didn't know that I was done being a teenager, because a very rapid mental maturation was going to be required simply for me to survive and treat this illness. I didn't know that I'd collapse on a college campus in a few years in so much pain that it would take the local ER three doses of morphine to get it under control.

Thank God I didn't know. I think I'd have been so afraid that I'd just have ended it then and there. Truly, thank God I didn't know.

So that's my story. 13 years ago, as of this past January, everything shifted, and I've been running as fast as I can to get just inches ahead--because staying in place is not an option--ever since, been managing three steps forward before falling two steps backwards.

Like I said: I didn't get the power, but the great responsibility?

Got that one nailed.

[Words: 1607]
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Note: Photo of the Lyme Disease Bulls-Eye Rash by cmkalina on Flickr; used under the Creative Commons License.
 
 
 
 
Rose
Due to a) a pinched nerve, and b) finally having my SS hearing date.  Which requires immediate responses, some days, on my part.

Plus, Dear LJ/DW Friends: Some of the posts are more directed--or bits in them are--at people from my Lyme blog, who are in theory friends and in theory care about Lyme.  And my having Lyme.  Like, as a foundation of our talking at all.

Yet, uh, they seek out no more info about Lyme except from me.

That grates.  A wee bit.


But yeah. We're def. going to extend blogathon until I finish all the st entries. All of them matter. I hope you understand eh extension, since the number of entries do not increase.
 
 
 
 
Rose

The most violent element in society is ignorance.
-Emma Goldman

I'm going to create and briefly define a few terms in this entry, in order to talk about this topic. If this results in any of you reading this being confused, do leave a comment, or email me, asking for clarification.

If you list a given topic, you can sort of define how likely it is that most people know something of what you mean, should you start talking about said-topic, by putting it where it belongs on a scale with General Societal Ignorance [Exists] at one end and General Societal Knowledge [Exists] at the other.

These two terms matter, so let me use them and explain a bit. If I were to bring up the topic of cancer--not any particular type of cancer, just, cancer in general--and it were put on that scale, it would fall fairly close to General Societal Knowledge; certainly it would be far closer to it than it would be to the middle. How do I determine this? Because if I were to be randomly given, let's say, a dozen people, and say to them, "I have cancer," most of them would have some idea of what that means. They would need more details, at the very least about what type I have, to know more than a general idea. But the words "radiation" and "chemotherapy" and "potentially life-threatening" and "seriously ill" all would drift through the minds of most of them; they would think of hair falling out; of the word "remission" and of being unsure for a long time if you're going to get better or if you're going to die. Society, in general, has reached a point where cancer is known well-enough about that it's not just the patients and the doctors who understand it at all.

Lyme isn't like that. In a lot of ways, the experience of having Lyme, in this area, is not unlike the experience of having HIV or AIDs in the late 80's, early 90's. The doctors themselves don't agree on many things; there are still doctors who, without examining me closely or looking at existent blood work and tests that prove I have Lyme Disease, not to mention the co-infections I caught from the tick as well--without bothering to examine these things, the doctors in question will just flatly tell me, "You don't have Lyme."

It's a messy, messy debate, where doctors who are supposed to be caring about patients turned out to also have stock in insurance companies--who don't want to pay for long-term care--and gee, despite the fact that tests have proven this not true, insisted that after being treated with antibiotics for 3 months, you do not have Lyme Disease. Even if you are not better--or you did not catch the infection right away. You have, "post-Lyme Syndrome" and all those symptoms of yours are all in your head.

So I understand, to an extent. I do. After all, there's this war going on in the medical profession itself, so when someone says to me, "How do you get that?" or, "I'm sorry, all I know about that is that it has something to do with a tick," I'm pretty much always happy to explain.

It's why I'm writing this, or half the reason, anyway!

That...said. The part that starts to hurt is when you realize--when I realize, anyway--that what I'm telling people about my illnesses is the sum total of what they now know about them, in many cases. People who are supposed to be dear and loving friends never so much as bothered to do a Google search about Lyme, or bartonella, or babesia. Not even just one of the three, nowhere near all of them.

I used to be able to ignore this much more easily. And then someone who was supposedly one of my dearest friend, who had told me she loved me like a sister, refused to room with me for Dragon*Con one year.

Because I had Lyme.

We'd roomed together before or this, and my having Lyme had not stopped her from going to the panels she wanted; she gave some reasons, trying to say more than just, "Because you have Lyme," but I didn't feel better. So I took the chat log to my GP, my Lyme Specialist, and a therapist, and asked why I was having such a hard time accepting this; why I felt so badly.

Three our of three said the same thing: "Because that's a bunch of bigotry in that chat log, hon, and people can always give reasons when they're bigoted and try and make it sound less so. But bigotry's what you're doing with."

I did try to talk to the person in question, who had said no, later, and told her how badly hurt I was, and the responses I'd had from the doctors. She insisted she gave the reasons so I wouldn't mistakenly think bigotry was the issue. I said, "I'm thinking I'm not the one mistaken, given that you did also flat out say, at the start, 'Because you have Lyme, I don't want to room with you."

(No, we're not friends any longer, but there were other issues that were in play with that, too. And that's all we're going into with that.)

Why does it matter? Because that was what slowly let me admit to myself that I didn't need to be grateful for people being friends to the "poor Lyme-stricken thing". I accomplish a lot; I do a lot; I care with all I am, and I will do all I can do you and fight for you and for you to find peace until I cannot fight any longer. Won't always agree with you, but I'll do my damnedest to work all things out. I'm a pretty good friend. Nowhere near perfect, but. I'm better than just okay, because it matters to me enough that I've spent a long, long time working in this area. There are probably many people who are better friends than I--but I'm a good one, yeah.

And I know four people, total, since I was diagnosed--immediate family aside--who have taken the time to find out about my conditions from a source other than, well, me. And yes, when you put Lyme Disease on that same scale? It's pretty darn near the end with General Societal Ignorance. And that's why I write these things, why I explain all I can.

I'm not going to tip the scale, though; it's going to take a lot more than just me, and we all know that, to move Lyme closer to the end with Knowledge. And it will take some work on the part of those who just know people with Lyme, rather than having it themselves. It will take some time here and there where you, the healthy, look up articles, do the reading level that I do every week, and learn the more gruesome facts that I've spared you having to hear from me, at least.

If nothing else, in theory, several of you care about me. I'd like to think I'm worth it.

And if not even that--then think of this: every Google search you make about Lyme, every article you read, every it of information you gain that makes you that much more knowledgeable in and of yourself? That chases away ignorance and myth and brings about knowledge. And from that comes things like "cures and treatments", for many people. I am only one.

And it is, as always, the light chasing away the darkness.

What could be better than that?

[Words: 1,274]
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Rose

 

To live is to suffer, to survive is to find some meaning in the suffering.
-Friedrich Nietzsche

 

A fair question to ask, and one that has left me staring like a fool at the screen. My brain's as blank as the blue screen of death.

Does not compute.

How long have I been suffering? Do I count from the first time I realized something was wrong? Do I take away the few times in between we thought I was fine until I first heard the wretched word, "Lyme"?

How do I add up seconds and hours and day and years and, yes, now decades?

How do you do the math of pain?

We don't know when I was infected for certain.

When I was eight, I was begging my parents for piggy-back rides and to be carried, because my legs hurt. Doctors couldn't find anything wrong, and it was blamed on jealousy of my younger, weighed-less sibling.

I heard the doctors say, 'Don't expect her to turn 13.'When I was in fourth grade, fifth, sixth, and seventh grade, each time, I spent three to four months of the school year in the hospital.

I overheard a doctor tell my parents not to expect me to turn 13.

My dogs became my guardians; my friends disappeared. I would invite them over; they stopped inviting me. Even when I was doing just fine.

I was better; eighth grade was lovely. I won first in the regional science fair, semi-finalist in the national. I placed in two different state math competitions, both individual and team. Did the same with math as a freshman in high school. Always over a 4.0 GPA. Always being asked to tutor other students by teachers.

Always making sure those students passed their classes.

But always so tired. Even when I wasn't doing much. I didn't realize until later I had no social life.

I went to school, and I shined--and I slept.

And I slept.

And I missed out on life, except for here or there--and I didn't realize it.

And then my knee started to hurt when I was 15, and suddenly I wasn't allowed to be a teenager any longer. It was over. I had to be an adult now, because it was the only way to handle my illness and save my life, too.

I had two years, really, of being a teenager, and then it was gone. I literally skipped that most of that stage of social development, because I didn't have a choice.

Why am I mentioning this?

Because I've been suffering as long as I remember, to answer your question directly.

But that, I think---that and the struggle to finish university, when the work itself is so easy for me--university and losing out on being a teenager...

Those are the ways I suffered (and still suffer) the most.

[Words: 458]

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Rose
During this time (March), both of my parents have been rushed to the ER by ambulance (at different times for different reasons), my site was successfully hacked once (which I'm fixing, as it affects only mobile phone access, end of this blog-a-thon), and my security tells me that at least three other hacking attempts have been made.

Each time that happens, I have to update my security, rather than blog.

I have a set topic list.  Unless another question is asked, it isn't changing.  My goal is to finish this by the first week of April's end.

But I'm extending the Blog-A-Thon until I've written each one.  Because each topic is important, either as a question I promised to answer or as something that NEEDS to be written about and shared.

The things you never know.

Also on that note, my mom is actually in the hospital atm, so please keep her in thoughts and prayers.
 
 
 
 
Rose
I think if you've read this blog for a while that you know religion and spirituality both matter very much to me.  That I feel the need to worship God in the most correct manner I can find.

I've been thinking about this for...man, five, six years, I think.  Because it's important.

Writing this down here somehow makes me feel like it's--it's real.  I'm not hiding what I'm thinking or decided on.  I'm letting people know.

I'm converting to Judaism.

There.  I said it. 

That was scary to type, but I'm not deleting it.

If you have any questions you wish to ask me, feel free to do so.  There are many reasons.

The reason that started me thinking on it, though, was...so many people I interacted with called themselves Christian.  And yet, the most un-Christ-like behaviour came from them.  I think that's what started to make me think.  Really think.

It's not the reason I'm converting.  It's just what started my mind working that way.

I need to hit post now.  I'm kind of close to weeping.

Because I mourn what I've lost.  What I'm going to lose.

But I won't pretend.  And after praying for years, after listening to God and looking at my heart, I finally said, "I submit."  It wasn't in the plan.

And I really do mourn the things I'm losing.  Have lost.  Will lose.

But this matters most.

And now I hit post.
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Rose

Tough times never last, but tough people do. -Robert H. Shuller


You've read part one of this, I'm assuming. So now here's part two--they go together, but rather than explain how, I trust you'll get it. Why has this post not been up sooner?


downloaded for free from 4freephotos.comBecause I was doing IVs of magnesium this week, for inflammation treatment, and I thought I was dying at times—and I mean that literally. The first and second time, I was sure that I had to be having a heart attack. The nurse insisted I couldn't possibly feel anything from a magnesium IV. The nurse does not understand how sensitive my body is; I felt like first my chest, then my entire torso (inside), then my limbs, and, finally, all of my skin was on fire. I spent the week curled up in a fetal position, crying, staring at a blank wall.

The doctor admitted he started too high, dose wise, except he's been treating me for years. And part of me wants to say, flatly, "You should have known better." Which, yes, he should have. But he’s human, and I get that—just as I get that I am so much more sensitive than most people that even the most perfect doctor in existence would probably start me on too high a dose of some medication or treatment at some point. It’s the way my body is. Simple as that. I feel more than you do, physically, both internally and externally. And I don't want to ever do this treatment again--but I need to, and I hate having to admit that.
 

Lyme Disease eats magnesium like it’s tasty, tasty candy. My body has been starved for it for years, most likely. And with four days of IVs, the inflammation has gone down so much…well, it’s remarkable.

I'm still not happy. It hurts, so badly that I’m reduced to tears every time they run the IV and unable to really do anything else the day I have an IV. But I have to put up with it all. I can want to scream and rage and say, “NO!”

Except.

Can it be worse than the other things I’ve been through, both physical and emotional? When I experience the pain, it’s all I think about…but it wasn’t so bad that I had to be rushed to the ER for pain treatment. And in the past, just on random days, I have had to be rushed to the ER for pain treatment. Because it was too damned much, I want to get better.

And so I give in; I accept that I need this treatment that reduces me a puddle of pain and weeping. And because the other option is to roll over, give in, and wait to die. As you may have guessed from Part 1 of this post, that other option has some appeal at times, I admit. Pain wears you down.

But I’m stubborn as hell, and I plan to dance at my wedding and to be around for as long as God grants me.

I'm not so much ready to give in and roll over and wait for death to come.

[Words: 531]

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Rose


Now I lay me down to sleep
I pray the Lord my soul to keep
If I should die before I wake
I pray the Lord my soul to take


No one knows what tomorrow will bring. In reality, there are no precogs; no one who can see a year from now. We know this, as humans. We know that we can’t know when our lives will end. If we’ll die in sixty years, or if we’ll be hit by a bus tomorrow.

But despite that, we make assumptions that our death is far off. We plan for our futures. For our 30th—40th—50—80th—birthdays. For our weddings and children and grandchildren. For that trip next summer, and the cruise in five years.

We assume we’ll live. That death is far off.

I don’t. Because I can’t. Because I know too much about my body, my infections. My reality and my life.

The percentage of people with Lyme Disease who commit suicide is rather high. Can you blame a single one? A disease that several doctors will say you don’t have that attacks every system of your body…and when the money for the doctors and medications runs out, or the insurance company decides that they’ve paid enough, even if you’re still sick…

Well.

Shit out of luck, aren’t you?

But it’s not just Lyme. Always remember that. Most all ticks that carry Lyme carry other diseases—coinfections—of which I have three. One of them could give me a stroke or an aneurysm at any time, with no warning.

Right now, I’m at very high risk for that stroke. Right now, my depression is very bad, my life seems very useless and miserable, to have little value, and I find myself staring at pill bottles from time to time. Staring and thinking. Just thinking, but thinking a lot.

I have so very many, you see, and all it takes is one of them. Maybe some whiskey to follow it down.

And then I know I’ll die before I wake.

But I don’t do anything but sometimes stare and think. Out of guilt, mostly; I can’t do that to my parents. Hell, I can’t do that to my cat: she wouldn’t understand, and with the way she reacts when I’m gone even a week, I’m afraid it would kill her, too.

Also, if Hell does exist—and I have personal doubts about that—then my Hell is….well, I’m already living it.

So what would be the point?

I have such a limited amount of time. My father is 64. He’ll only be working so much longer. I must get better, must, before he retires. And I must finish college before he retires as well.

It gets very hard to breathe, sometimes, and the weight of it all seems like it’s too much. There’s not enough room for me in this infected, broken body. I am a soul; I have a body. Thank you, C. S. Lewis.

And I don’t care much for the body I have. Or, at least, I don’t think of it as being me. But the part that is me suffers from this…thing, this construct of flesh, that hosts me for now.

That is how God made it, and so I accept, and I submit.

I also hate it.

I do not think about getting married, though the part of me that’s Katie, or Kitty, depending on the family member you ask, that part still dreams of a wedding. Of meeting a man who will understand and work with me and be my partner and love me as I love him. She likes to think of graduating college, of publishing her books, of getting a job. Of children, even. Of growing old, and finding joy in wrinkles and grey hair.

But that’s the little girl Katie/Kitty, and she’s very deep inside me.

As for me, I’d like to make it to my 30th birthday. That’s my private wish, beyond the wishes of getting better and graduating uni. You could call it my Special Wish.

I turn 28 in April.

I’m horribly afraid my Special Wish won’t come true.

[Words: 692]

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Rose
06 March 2014 @ 09:54 pm
I'm about to post the first entry. Which. *breathes* Was not easy to write, and that, sort of, was why it had to be first.

But I wanted to clarify a few things and answer a few questions before I post it.

1) You can let me know you want to sponsor me, and which of the three ways you want to do it in, at ANY time while this is running, up to a week after the last post. My email has changed, due to not receiving emails I was told were sent to me. It is now running.towards.spring@gmail.com.

2) Same goes to linking towards things, be it individual entries or using a banner and linking to the main page.

3) All entries related to this Blog-a-Thon can be found by clicking this link on DW and by clicking this link on LJ.

4) Since some sponsors are doing so by words written, the word count of each entry will be at the bottom of said entry.

5) I'll be putting a PayPal banner at the bottom of each entry, just so it can easily be found by sponsors, though many will not be using it until the end of the blog-a-thon/the last entry is up/up to the end of the first week of April.

6) Any question can be addressed to me by either commenting here or emailing me. Again, the address is now running.towards.spring@gmail.com.

*breathes* And I guess...that's it.

On with the first entry.
 
 
 
 
Rose
Originally, this was going to take place in February, but LJ failing at sending me notifs has moved it to March.

Throughout the month of March I'll be posting pieces of writing related to Lyme Disease and chronic illness in general.

See, after my health stopped me from updating http://www.lifewithlyme.net for several years, I'm able to write on it again. I'm revamping the layout and writing regularly, and a great deal. I'm also beyond broke and in debt, hence the blogathon helping from all angles! Here's how it works, and the three ways you can help out:

Way #1: Comment Here with Questions About Lyme, Being Sick, Etc.
Whether you want to sponsor me out not, comment here with anything you want to know about Lyme, connections, the treatment for them, and how having them had affected my life. Every single one will be answered in an essay in its own post.; I really want to answer the questions you actually HAVE--and enough people have said things that I know they do have questions--so please, do ask,.

Way #2: Sponsor Me!
If you want to sponsor me, you also comment here, letting me know how you want to do so.

You can do it one off three ways:
- choose to pay between $0.01 and $0.03 per word, for every word written in the blogathon.
- choose to pay an amount of your choice that you either list here or tell me you'll email me (and then do so; if you don't know my email, ask for it) for every post that goes up for the blogathon.
- choose to pay an amount of your choice that you either list here or tell me you'll email me (and then do so; if you don't know my email, ask for it) for my doing the blogathon at all.

Way #3: Link to this Post, Baby, Link-Spam Away!
Because people have to see it to participate in it.

This page has three different banners to choose from for the linking process, if you want to use them.  In fact, under each one is a block of code; just copy and past it, and the banner will show up when you hit post, and it will link to this page.  You don't even have to save the banners and re-upload them!  I'm so kind.

The In The Lyme Light Blog-a-Thon will run for the entire month of March. So, please, comment away here! Participate in the first, second, or third way, but please, DO participate? It helps me out a ton.

Those who do actually sponsor will have individual badges made and given to them at the end of March.

Still, PLEASE, link others to this post.  I'm very serious about this, because people don't know enough about Lyme, and it's the sort of thing where information needs to be spread.. And there's tons you don't know.

For example, every day, I'm at a medium-ish risk of dying from at least one thing. Some of you reading this have known me for years--but you were unaware of that information. You have no idea what, though, or why, or what caused it.

So please. In one, two, or all three of the ways possible for you to participate, do. Heck, thinking of what is too much and what's not enough to write about alone is difficult, so the questions really do mean a ton.

Off to make the post with the banners and buttons. And said banners are now up on this page here.

ETA: Here's a link to the original post. For two reasons. The first is organization. The second is some people commented there with questions or offers of sponsorship, and I want to be able to find it easily.
 
 
 
 
Rose
I have three different sizes; under each one is a window with the code to copy for the image and to have it linked to go to the main page for the blog-a-thon.  And I'm hosting the banners, so you don't even have to save and re-upload them.

So here we go!

























 
 
 
 
Rose
08 February 2014 @ 06:51 am
Okay, so, LJ just gave me comments from the people who are willing to sponsor me so far, um, today.  So I'm doing it in March instead.  If you don't remember the gig, look over here

Banners and badges will go up this weekend, for people who sponsor get a badge and ANYONE, those who sponsor or not, can pimp it.

...Please do.  I am admitting I need help.  And I'm asking for it.  And it's hard, and you don't have to sponsor me, but it won't kill you to pimp it even if you don't sponsor.  Pimp it here, pimp it on DW.  Where I need to post this.

Please.  To be honest, and only to be honest, if brutally so?  I've helped a LOT of you out when you needed it.  I've bought things, and I've done fundraisers, and I've worked my ass off.  And I did so gladly.

You can at least pimp, even if you don't sponsor.

That I am most definitely asking for.
 
 
Rose
29 June 2013 @ 03:35 pm
I'm sitting in my room in my parents' home for the last day; tomorrow I drive back to my own home in PA, my father along for the rather long drive. I have yet to pack at all, though we're doing it fairly simply and not worrying too much as long as nothing like a medication gets left behind.

I should be sleeping now, as insomnia--a symptom of my bartonella--has been hitting me hard for the past few months, and yet I'm curled up on my beautiful teal mini-sofa (mini, and yet too large to get up the stairs to my DEFINITELY mini-apartment, more's the shame) and looking at wooden boxes and plastic containers. I have been digging specific items out of them, but I cannot bring myself to really go through the entirety of their contents as I should.

They contain my many art supplies, of all types, you see. I still due various types of jewelery work, and I work with yarn and fiber in as many ways as I can think of--but I can no longer draw no paint. My hands shake too badly, and my fingers are far too stiff from arthritis while simultaneously inflamed from the toxins of the disease.

I am getting better, and I know it. I will be cured before another decade is up, and I know that too. In many, many ways, I am lucky.

But there have been costs every step of the way. Huge financial costs, of course, but those aren't the ones that hurt, and I think we all know that. I've paid more than my dues in many areas since I was infected with Lyme and the two co-infections, bartonella and babesia. And I try to not complain too often about it, because no one wants to be around a whiner, for one, and for another...it just doesn't do any good.

But right now I'm curled up in my chair, staring at my art supplies and my cat who is lolling on her back near them.

And I would give almost anything, in this moment, just to be able to draw her like I know I could have a decade ago.
 
 
 
 
Rose
1) With Regards To Many Of Those Who Are Infuriated About Christa Dias Winning Her Suit Against the Archdiocese of Cincinnati:

(Note: For a very brief, but covers the basics, article about the case, you can go to this report.)

To many of those who are furious that Christa Dias won her case against the archdiocese of Cincinnati, I point out the following:

1) This is not a violation of freedom of religion. It has long been law that federal and state laws still apply to religious organizations. They are obligated to obey them.
2) Neither she, nor the Archdiocese, argued at all that her sexuality was relevant to her dismissal. The display of homophobia and bigotry by many had been vile.
3) To those arguing that she violated her contract, I make two points.
a) She is not a Catholic, artificial insemination was not mentioned by name in the contract, and her interpretation of what it meant is a completely logical one.
b) The entire issue of ANY employer thinking they have the right to control the private life of its employees is, bluntly, disgusting. You want to talk about 1984? That's something that Big Brother would smack his lips at.
4) Her argument that this sort of action punishes women while men get off the hook is entirely sound.
5) Finally, I point out that this is a dangerous slope for the diocese to have set off on at all. If you want to truly make such actions "fair," then it must require doctors record, pharmacy records, grocery bills, itemized statements, online doing bills, and more, to make every effort to identify any teacher who might be using any form of birth control in any capacity. Once identified, all such teachers would then be fired.

Suddenly seeing, some of you, the incredibly serious and dangerous issues at hand?

I hope so.




Why Snowden Is Not The New Ellsberg

You can have whatever opinion you want about the leaks about data mining itself, but there are SEVERE problems in many areas with Snowden's actions. (And I'm not talking about him being melodramatic, as the Washington Post described his behavior in their interviews.)

First: Snowden says he is not running from justice, but rather wants the courts and "the people of Hong Kong" to decide his fate.

Ellsberg did not run to another country. He was tried in the United States. Snowden's desire to have the people of Hong Kong, rather than the people of the United States, decide his fate is seriously problematic and questionable. It's hard to argue otherwise than that, on some level, he IS running from justice and trial.

Additionally, it becomes harder to say Snowden is not a traitor now that he says that the US has hacked Chinese computers and stolen information. This issue has become two-fold, now, and is not JUST about the phone data collection. Snowden shared government secrets about actions taken against China while, gee, in a Chinese Territory--and Beijing, of all places, is the one that can block an extradition attempt by the United States, even if Hong Kong agrees.

I am not commenting on the information that was leaked itself. I'm commenting on Snowden's behavior. He potentially could have come out of this looking like Ellsberg did after the trial with the Pentagon Papers.

He won't be able to do that now. He's released information in an attempt to block extradition; he has refused to be judged in the United States. He ran.

I'm not calling him a hero, and I'm not calling him a traitor, though I have and I do again point out that it's harder to argue he's NOT a traitor since he leaked information about the US hacking Chinese computers.

I AM calling him a liar with regard to what he's doing, when it comes to him saying he's not trying to avoid justice.

I'm also calling him a coward who, now that he has leaked information, is leaking more in an attempt to save his own skin.

I believe the data mining by the US violates civil rights. I agree with Franklin's statement that those who give up a little liberty for temporary security deserve neither.

But I have a hard time with anyone who says that Snowden is a hero and ignores the facts I've tried to point out here.

If you are brave enough to leak information that you feel needs to be leaked, I applaud you. But accept the consequences. And don't leak more to other countries simply to save your own skin--because then your reasons stated for leaking the original data becomes highly questionable.

And it leads people, like me, to form the conclusion that whatever else Snowden might be, he is also a self-serving coward who wants to save his own skin more than anything else, and he doesn't care what he has to do in the process.
 
 
 
 
Rose
22 May 2013 @ 01:40 am
So as I said in the post before this, money? It is tight. And I'm doing my part.

Since I can't work, that means selling things. And I'm selling a lot. I sorted just round one of books today, which I plan to put up online tomorrow/day after, and there's over 125.

I'm also selling magazines, ALL my comics, videogames, clothing, yarn, craft tools, patterns, MORE books...it goes on.

Now, some of you have already "reserved" items from me, mostly knitting needles/crochet hooks and yarn. Some of those things are here; some are in PA.

Except I can't drag everything that's HERE to PA. So. If you buy something that's here and you ALSO have reserved things in PA, yes, you have to pay for two shipments. But I promise to throw in free stuff to BOTH shipments. And not crappy free stuff. AWESOME free stuff. Like, entire skeins (plural) of awesome yarn. Or many books. As you like.
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