19 August 2014 @ 03:27 pm has some awesome deals today. Go check them out! (No, I make nothing if you buy these things. You just save money. Which, y'know, always rocks.)
Are you aware of AmazonSmile?

Located at (in case for some reason you can't the embedded link), it allows you to support one of any number of charities every time you shop at Amazon.

The first time you go to the site, you choose the charity you want to support from a huge list. (You can change the charity to another at any time.) Every time you shop at Amazon, the company will make a donation to the charity of your choice--IF you go to instead of simply The two sites are identical, but starting at the AmazonSmile url is what triggers the site to make the donation. If you go to just Amazon, no donation will be made.

This costs you absolutely nothing extra. It just requires you to type in five extra characters--six if you count the period--when you type in the web address to start shopping.

(And, yeah--if you want to help me and use my affiliate link, I believe I can connect it to AmazonSmile pages, including the very first page/main AmazonSmile page, meaning anything you buy on that visit is associated with my affiliate account. Or I can directly link you, which is a little less risky, to the pages of the items you want, with the smile subdomain included in my affiliate link to the item(s) page(s). Just contact me and let me know when you're shopping and I will get back to you with either my affiliate link to the main site page, or to the item(s) page(s) for what you're buying. The latter preferred, grateful if you contact me about either.)

The above paragraph aside: this is something that costs you really nothing, like using an Amazon Affiliate link. And it helps one of many charities, and you can choose which ones, as I said, and always change the one you have Amazon donate to.

I hope all of you use this in the future.

If anything here is unclear, email me ( or comment here, and I'll do my best to explain it better.
20 June 2014 @ 01:37 pm

“How bitter were
the Prozac pills
of the last
few hundred mornings”
- Leonard Cohen, Book of Longing

Today I think I'm going to die.

It started with a nose-bleed.  Nothing I thought about much; easy enough to deal with.

Two hours later I'm being rushed to the doctor's office, covered in blood, because I've just thrown up a toilet-bowl's worth of life's precious liquid.

The taste is still in my mouth.  The stench won't leave my nose.

I think that I might actually be dying, and for a moment, I'm not even sure how I feel about it.


Turn out it's a reaction to a medication.  Dried out some blood vessels in my nose, which burst; blood ran down my throat in my sleep.  The nose-bleed was just the first sign.

There is relief, but there is exasperation, too; I am so very tired of taking poisons to try and extend my life and improve my life just a little bit more, a little bit longer.

FDR survived polio and became president, I tell myself, so I can survive this.

It's become a mantra.  I'm obsessive about reminding myself of this.

But I don't always believe it, I have to admit.

My doctor had me giving myself shots with insulin needles.  Shots of magnesium.

Except I hit a blood vein by accident one day.  The magnesium strips all the flesh from the vein; everything becomes necrotic, but it's under the skin.

I can't even see the problem.

So it takes a while, until I find myself in a wound clinic. They've numbed my leg and are cutting, cutting, cutting away dead flesh, dead skin, dead fat, and by the time they are done it the hold is so large you could put a golf ball in it.

It looks like a zombie took a bite out of me, I find myself thinking, and I know I'm a little bit in shock as I stare at the hole in my leg and my father helps me walk best I can to the car.

It's not so bad until the numbness wears off.


Then I start to cry and grit my teeth so I don't scream.

I refuse to scream.

If I could keep the tears in, I would; my eyes are squeezed so tightly shut it hurts, but they insist on coming out anyway.

I am a slim woman who has such inflammation she's gained over fifty pounds that she can't lose with exercise.  Only treating the inflammation will do that.

And I understand.  I accept.

But I feel so ugly every time I look in the mirror that I want to sob.

I want my life back.

I'm on so many medications that make my already-pale skin sensitive that no matter the time of year, I must wear sun block to go outside.

I sometimes forget if I'm going out for just a few moments; I burn as a result, and I can blame no one except myself.

The medications I take eat away at my stomach.  I call them poisons, and they are; they poison the disease.

They just poison me too.

I just want my health.  I want my life.

Why is this so much to ask for?

At one point my hair started falling out.

It's grown back.  But it was one more thing; the illness is no longer so invisible.

I wish it was again, even if it meant fights with people who didn't believe me.

I didn't hate myself or my own reflection so much, then, at least.

That was better.

[Words: 597]


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14 June 2014 @ 09:31 pm
 The entry I'm writing is one of the hardest to write: side-effects of treatment.  

I'm trying to not let it turn into the length of a formal paper, which is taking a bit. I've finally set it to talking about no more than five side-effects and so it's become much more manageable. 

So. Final product should exist soon. 
10 June 2014 @ 09:19 pm

The injury to my leg basically made me look like a cannibal took a bite out of me.

It's finally healed enough for me to get online. The pain was distracting. 

So tomorrow I'll put up the next blog-a-thon entry. There are...I think five more. Batya, I'll let you know the various totals of entries and words when I'm done. Desert Vixen, if I forget to put the word count at the bottom of an entry, let me know?

I'm sorry this blog-a-thon has taken so long, but between my mother and father both having health problems and the agonizing pain from my leg, life has been kinda full. But I said I'd finish and I will.

Tomorrow's entry: dealing with side-effects from the treatment.

(By the way: I'm totally broke as a result, but because of this and the donations, I have paid off almost all of my debts and helped my parents out by using some donations to pay for my bills, rather than letting them do it. Hopefully when I finish this I'll have all debt gone.)

Meanwhile, would anyone like to buy a 160 gb iPod Classic, 6th generation? Literally perfect condition. Price negotiable. 

And I hate writing this, but. If you're interested in buying any of the Shadowcat statues that exist, let me know. I own them all. I don't really want to sell any, but. Needs must. 

I was unable to crochet when my leg was hurting so badly, but I can now.  I'll put pictures of things I make up here. If you like any of them, I'll make you one of your own. 

...I have to. I can't go into family things but it's become important I begin to earn some money of my own.

Meanwhile, I was told not to come home for Christmas. Reasons aren't exactly complex, but they take up a lot of space. 

And that's my life atm. I'd start the next blog-a-thon entry now, but there's no wordcount feature on my kindle.  So, tomorrow.
29 April 2014 @ 08:40 am
Oh my God, my leg hurts so badly I cant stop crying.

This make for a great Lyme post about the immune system and how it's affected and things that may happen. And Kindle books from the Big Deal (over 400 books that cost under $4) that I think I'll be buying will be a great distraction.

...I'm rambling in my post because I hurt so badly already, and I'm scared how much more it will hurt when the wound is cleaned out and the packing and bandage is changed today.

God. I'm stuck in bed. I am going to need those books, as I hurt so much I can't even sleep. But I've been trying to save money. One more thing messed up.

And thank you, new and crazy drug laws that kept the Wound Center from writing something for me. The doctor and every nurse said they used to write them, but don't any longer because of the changes. And the all felt so badly for me.

I appreciated it from the nurses. Not so much from the doctor, who COULD write it, and bit get lip debating doing so, but decided not to. Thanks, doc. Your fear has left your patient in vomit-inducing levels of pain.

28 April 2014 @ 09:19 pm
 It MIGHT get finished by May 1st. But with family things, like mom breaking her ankle, this month? I think it was wise just to make a set list of topics for this and decide to just finish as possible.

Though it won't run past May, as I have a class start in early June.

Meanwhile, I'm about to pass out from pain, due to essentially having out-patient surgery unexpectedly today, and the doctor who did it didn't give me any pain killers. (She wanted to, but the crazy changes in laws have thrown the baby out with the bath water. She felt really badly, at least?)

At least this unexpected-like, found out about it this afternoon right before they did it-surgery works wonderfully as an illustrative example for my next Lyme post!

In which you will hear all the details, but as a preview and to give you an idea of the kind of pain I'm in?

I literally have a hole in my right leg that you could put a golf ball in, with room to spare.  Though it has gauze in it, instead of a golf ball, thankfully.  
Though I don't believe that there is a difference in how much pain is involved in the one scenario vs the other.

I'll leave you with that, to give you an idea of how I feel, until I wake up and write the next blog-a-thon post. As between pain and crying, I'm going to pass out for a few hours now.

I hate diseases that affect the immune system and mess with how things heal. I will say that much more for now.

26 April 2014 @ 05:55 am
BTW, due to lots of spam that was driving me mad, along with not receiving emails being sent to me and a few other more private reasons, I have a new email address.

It is: running [dot] towards [dot] spring @ gmail [dot] com.

26 April 2014 @ 05:46 am
I can't believe I forgot this one.  While I edited it in, it deserves a post on its own.

I will read my f-lists again, as often as possible. 

Given my health issues, probably not every day.

I will still miss posts.  I will still have days I read your posts but cannot type to leave a comment. 

But I am doing my best to connect with you and your life.  Please, help me do so.  And do the same with mine.
26 April 2014 @ 04:20 am
I'm starting my new year with my birthday, this year.  It's more personal.

My vision with computer screens is still not great, but the migraines have stopped.  So I'm making online resolutions and sharing them here--because they may relate to you.

1) I will be online every night (barring going out, migraine, or homework) except for Friday nights.  This means I will be on AIM using the username the mirkat.

2) I will be messaging, emailing, or otherwise contacting people I've fallen out of touch with--or even defriended--and miss.  I'll be letting people know how I feel in those emails, as well as how I felt, and I will be honest. 

Honesty is not an attempt at emotional blackmail. 

I was accused of that in an in email once, and a counselor I discussed it with said the best hing I could do was to distance myself from the person who made the statement, as s/he had issues of his/her own that s/he needed to deal with and was not.  The result in such a case, for me, would probably eventually be a painful one.  (The counselor was right in every respect.)

The point of sending these messages is that I miss that person and want to re-strengthen or resume our relationship--in some cases, I'm not even sure what happened, except that the person just stopped talking to me. 

But, again, for each person I message in some form--and this will take some time for me to get to everyone I want to, I know--I am doing so because I still think about that person, miss them, pray for them, wish them well, and would like to resume our relationship.

3) I will become active in fandom again. 

- This means: RP, fanfics, playlists, fanmixes, reading comics, watching TV, reading new books, etc.

- Recs in all of those areas (tv shows, books, comics) are appreciated.

4) I will read my f-lists again, as often as possible. 

Given my health issues, probably not every day.

I will still miss posts.  I will still have days I read your posts but cannot type to leave a comment. 

But I am doing my best to connect with you and your life.  Please, help me do so.  And do the same with mine.

5) I will be posting book reviews that will be copied from a wordpress blog that I'm setting up as soon as I decide on a domain name.  Something short and sweet. is for fandom; I need something that's not for professional things, but could be found by an employer without embarrassment. 

Suggestions are appreciated.  (Think,, that sort of short thing, but something that works for me for general blogging, reviews, etc.)

There.  That looks manageable, no?

25 April 2014 @ 09:26 pm

“How bitter were
the Prozac pills
of the last
few hundred mornings”
― Leonard Cohen, Book of Longing

As today was the birthday from hell, involving (as the worst, but far from the only, thing) my father yelling at me literally for no reason and to the point of reducing me to tears, only one of the thee posts is going up. My family has officially declared my birthday to be tomorrow, instead of today, and hopefully the others will be up then.

So. The pills. I was going to take a picture of all of my pills that I take in one day, but after I had fifty out and was not near done, I decided to just put the pills back into their bottles.

I feel that statement makes the same point that a picture of all the pills (and bottles of liquid medications) would.

Fifty pills out on the table, all of which I need to take to keep living. And that not being all the pills I take on an average day. Liquid medication that costs $1,000 a bottle, and which I am always a little concerned, in the back of my mind, that the insurance company will one day decide to stop paying their share of the cost for it. Medication for Lyme, for bartonella, for babesia. For my adrenal system, which is basically destroyed at this point. Medications to help get the toxins out of my system, medications for pain--and that's plural, because no one pain medication works on all the kinds of pain I have. Though they're not all what you think of as "pain medications". Some are muscle relaxants, some are anti-inflammatories, and some alter how my nervous system perceives pain--oh, and yes, I'll be needing treatment for damaged nerves at some point, too, but we can't do that until we get these other diseases dealt with.

Yes, I ended a sentence with a preposition. It's not a sin.

Medications for depression, and that's plural, too--I'm on two, technically, but only one of them am I on continuously. We pretty much constantly try to find a second one--because the depression caused by the bartonella chemicals is just that bad--which will help without negative side effects.

Medicine to help me fall asleep. Medicine to keep me from falling asleep during the day, and not only to keep me awake--because that's one thing--but also to give me energy to get up and go do things, which is another thing entirely. The first one we tried just kept me from being able to fall asleep--but it did not give me any energy with which to go do things.

That was pretty much hell.

Pills for nausea, pills for migraines. Pills and creams both for when it feels like I'm walking on broken glass when the bartonella flares up, so I can at least walk to the bathroom from my bed without wanting to scream.

I haven't even gotten into the vitamins and supplements yet.

You're getting the idea, yes?

And that's the first half; the pills, and how many there are. I can take more pills at once without choking than you want to think about.

But the second half of this entry--and the dangerous part, the part I have to fight against--is pill fatigue.

You see, you reach a point, after months and years of taking dozens of pills every day, you reach a point where you go to get your first pills for the day...and, well.

The mere sight of them makes you run and throw up.

You just can't take any more pills. Your stomach rebels. Your mind rebels. I don't know why it happens, but I do know it happens to everyone I know of who has taken large amounts of medications for long periods of time.

And the logical thing to do is to give yourself a break from the pills. Not a bad idea. Doctors agree it's not the end of the world and that sometimes you just need to not swallow those capsules and tablets multiple times every day for a bit.

The dangerous part? Is remembering to end the break. It's so very easy, even if you decide on an exact date on which you will begin taking your pills again, to let that break just...sort of not end.

Which means your infections build back up somewhat.

I've managed to get that under control with a system--managing the lengths of breaks, I mean--and even the longest ones I've had haven't come close to, like, undoing all the good work I have done for getting rid of my infections. But it was time lost, and it frustrates the hell out of me.

Except at the time, I just. Could. Not. Take. Those. Pills. Or at least not all of them, to be accurate; I never go off all of my medications, even when I need a break. Just some. But still, each time, it was some time lost on the path to being healthy again. (And, by the way, people who say Lyme cannot be cured, only go into remission? Are wrong. The problem is that their doctors a) did not treat them long enough and/or b) did not address the issue of biofilms. Which I won't go into explaining in detail, as that isn't my point. Or, sadly, c) the person was bitten again by a tick nymph, which is invisible to the human eye and may not cause a rash...but can still re-infect them. But, again, not my point. What is my point is that yes, I can and will be cured of all three diseases. I know of people, patients of my doctor, who are actually, truly cured.

Which is why I do, in fact, put up with the dozens of pills.

But I hate taking each and every one of them.

[Words: 976]


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24 April 2014 @ 10:54 pm
One is mostly done and the other half done, but my eyes are literally burning from crying--as it is apparently now tradition that my mom reduces me to tears the night before my birthday--and having acidic toxins in your body makes saline really, really burn.  Sweat, too, but then, that's part of one of the lyme blog-a-thon posts, so I'll leave that topic for later.

Three posts tomorrow, then:

- Pills and Pill Fatigue
- Effects on the Body and Body Image as a Result
- Where there is life, there is hope.  And that's why each year on my birthday I blow out a candle instead of swallowing pills and vodka and letting it all drift away for good.  Because even if the only result of all of this, in the end, is that I fought until the end and lived the best life I could, forgave those who hurt me and was always wiling to talk to them over the pain caused by one or the other or both of us, whether they were willing to or not themselves, well--if, in the end, that's all there really is?  That's far from nothing.  That might be just about everything, really.  Or, rather, almost everything.  Not quite the whole and all--but the best attempt that a flawed but fighting human woman managed to make out of her life.  And that's, at least, enough.

So say we all.
23 April 2014 @ 09:46 pm
 I fear this won't be done this month, as taking care of my mother and house things has left me exhausted most nights. 

But!  Two important ones tomorrow, and, as said, I had a set list  of topics at the start of this, and I'll just keep going until it's done.  (Have I really only done nine entries?  That's pathetic.)

Anyway.  Tomorrow, you may look forward to a) an entry on pills and pill fatigue and b) an entry on distorted body image and how it affects my sense of self. 
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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“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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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."


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."


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 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.
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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"Eat to live, don't live to eat."
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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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.
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.