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In the mean time, I am falling apart.

My headaches are getting worse everyday, like how they were last summer. They last for hours and the worse they get, the less coherent I am. I went to the emergency room last year- they thought I was having a stroke. Noise drove me crazy, I was stuttering and slurring my words, my body was numb- and my head, of course, was breaking me apart.

My Lyme Specialist just posed the question- with addition to my eye pain, if I have severe migraines. I am being booked for a nuclear brain scan, and I was prescribed a triptan which I am not even allowed to take yet because the pharmacist has to check if there are serious interactions with my hundreds of other medications. He wondered why no one had considered this before- he once had a lady with similar symptoms. the paralysis, pain, everything, and after the scan, they discovered there was blood flow in only half of her brain.

The numbness I have had in toes, my other hands- some of it is the Lyme, but other issues could potentially be these headaches. I am unsure of what is related.

I don’t know what to do, writing this even hurts, staring, breathing, everything. I have so much work to do, but I actually want to run my head into a truck.

And there are these annoying floaty things in my eye.

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I hate medication.

I am on a lot, a lot of medication. 10+

I feel like utter shit. There is no other way to describe having a headache for 7+ hours. I feel fucking hungover and I’m getting sick of it. I can only chalk it up to medication, because I’ve felt this way before on days when I properly take my medication and add a tylenol or two to the mix.

And I’m not even abusing, overusing- if anything, I’m not even taking all of my medication but that’s not the cause of the headaches.

I’m just incredibly bitter and grumpy right now and life just doesn’t help, I woke up and late and have been trying to sleep- I missed class and I probably would have fainted on the subway between the headache, dizziness and heat.

It’s 30 degrees out and I would love the beach if I didn’t feel like this and my vision wasn’t so wonky and just, ugh. I just feel overly lethargic and am also a little scared to shower in case I fall over.

I’m trying really hard to be coherent.

I don’t know if I can fake a smile and stop myself from snapping at anyone either, so I’d rather just hide in my hole and curl up in a ball and sulk.

I swear though, if one person tells me today that I wasted my day doing nothing, and that I seem fine I will fucking tear them a new one.

Is it the headache that is making me this irritable, or the medication, or both?

Walk in my fucking shoes. Ugh, if only I could say some of this out loud. (Never mind that I don’t really curse. In general. I must be really out of it.)


From The Healing Journal.

Pills, pills, pills…

FEBRUARY 2, 2010
by Kim Christensen

Breakfast!

There’s my breakfast pill dose.  Not too bad compared to some Lymies out there, only  nine pills!

The hardest thing about pills is the scheduling.  Seriously.  Take some pills with food.  Take some pills on an empty stomach.  Take some pills with certain kinds of foods. Sometimes I’m having a hard time finding time to eat in my pill schedule. No more snacking.  No more mindless eating.  Nope.  Meals are planned.  Pills are planned.  Everything is planned. I have a schedule to maintain.  Sometimes I’ll find myself so hungry, but know that I shouldn’t eat because I need to take my pills on an empty stomach.  Then I choose between pills and food.  I usually choose pills, just because I’m feeling militant.  But of course, I”m losing some weight now.  While that may get me back into my black miniskirt, I don’t necessarily like the whole losing weight like this plan.

Ugh.

In order to make this whole pill organization thing possible, I got some of these snazzy pill organizers.  You know you’re a Lymie when you use a weekly pill organizer for a single day.

I know own 4 of these little beauties, which means I only have to sit down and open all my pill bottles up for refills every four days.  Instead of using one pill organizer for a week, I use it for one day.  Each “day” slot I use for a single serving of pills – when I wake up, with breakfast, midmorning,etc.  It helps me remember what to take at what time of day, and know that all my drugs for that day (with teh exception of liquids and my refrigerated probiotics) are in one place.  Grab and go.  I made a chart of all my pills and what to take when to help me when I’m filling them. .  It has changed my pill life, seriously.  Not having to think about which pills i need when is such a blessing.

I’m finally having Herx reactions.  And the antibiotics are starting to take their toll.  I really felt great for a few weeks, but last week something shifted.  I feel like my adrenals are exhausted (literally, they hurt, and I’m getting dark circles).  The sides of my torso ache under my ribcage. I’m feeling a little flare up of the old bacterial vaginitis/yeast infection again (despite taking Diflucan and loads of probiotics).  My digestion is slowing down, and I feel cold. Ugh.  I’m getting stomach aches after meals again, something that I had let go of quite some time ago.  The chills are dreadful. I feel a weird shaky shiver up my spine and into my neck.  My skin feels like it is crawling.  And I have a searing headache that comes and goes.  My feed hurt. My eyes burn. I feel like I have the flu.

Herx, anyone?

It has only been four weeks!  How am I going to survive taking this for an undetermined amount of time?!

I’m struggling feeling pity for friends who are sick and complaining about body pain or aches. I feel this way EVERYDAY.  I still go to work.  Taking a nap won’t make it go away.  It won’t get better in a couple days.  It will be there tomorrow, and it was here  yesterday. It is here now.  It is here all the time, just in varying degrees of severity. Even a good day has the presence of a weight on my shoulders.  Combined with Seasonal Affective Disorder, my positive spirit is getting a little worn down.  Okay, not too severely, I’m still generally bubbly, despite feeling crappy. But I do feel a bit alone, isolated, and misunderstood by most of the people I see everyday.  And I do feel like holing up in my apartment, siting on my couch, and watching Law & Order SVU on Netflix.


Ah, yes, Kim, I do understand.

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Social grievances.

God, my fucking eye hurts. And do I hate to swear. I’ve been waking up with feels like “medication hangover headaches” but I’m not entirely sure. But they do make me want to curl up in my bed and sleep, for you know, at least a few days. I had my MRI at 2 AM on Friday. I had to cab home- if I had bused, I would have been home at like 5 AM. And then I woke up at 6 AM to sign up for courses. Oh life, you are dear.

The buzzzz, buzz of the MRI, it sounds like nintendo. I got to keep the ear plugs they put inside the giant noise cancelling headphones, and a oh so very attractive hairnet. The earplugs, though, won’t do much for the ringing in my ears. Maybe for my nagging mother, though…(Well, alternatively, I suppose I can just hang up the phone, I can’t imagine how much use ear plugs would be over the telephone anyways…)

—–

My housemate just told me that I’m “so happy all the time.”

I told her that if I wasn’t, I’d kill myself. I was joking. Mostly.

I remember in my first year of university, I used to go to the same food place pretty much every day, so much that I got to know the guys working there by name. (He’s on my facebook, actually.) He told me, Deena, it’s exam time, everyone else comes in with a depressed look on their face- but you, you always come in with a huge smile on your face.

Yeah, well it’s true. I guess. I never really noticed until people started pointing it out.

No, what’s the term- Negative Nancy, Debbie Downer? It’s not even really pretending to be happy, per se. In real life, I try to be positive, at least. I’ll let my worries out here, but it may not reflect how I feel 24/7. That being said, being um, upbeat all the time (well, sometimes it can be tiring when I grit my teeth for the sake of others, but I am genuinely a giddy child, no artificial behaviour there) can mislead people. Just because I don’t look sick doesn’t mean I’m feeling great.

But then people forget. They forget my situation is different, they forget that yeah, sometimes I do need accomodating. They forget why I can’t always interact with everyone in the same way. And they take it personally.

When will they realize- it’s not about them?

It’s made me draw away from them, because really- when I needed them most, they were causing unnecessary problems.

Some holes you really can’t sew back up, no matter how hard you try.

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The CDC doesn’t know anything.

I don’t know where the CDC gets off giving off incorrect information about Lyme disease.

“Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. A few patients, particularly those diagnosed with later stages of disease, may have persistent or recurrent symptoms. The authors of studies sponsored by the National Institutes of Health have concluded that these patients may benefit from a second 4-week course of therapy and that longer courses of antibiotic treatment are not beneficial. Longer courses of antibiotics have been linked to serious complications, including death.”

If two months is all it takes, why am I not better CDC? Why have patients in wheelchairs began to walk?  Why has my ptosis not gone away? Why am I still incredibly foggy and why do I fight to stay awake every single day? This study from The National Institute of Allergy and Infectious Diseases (NIAID)  in regard to the placebo effect is one of the most insulting studies I’ve read. I wish I could create a mandate that requires only people who have suffered from real illness to be able to create such a study. Otherwise, these people could not even possibly understand. Not to mention this one study is not comprehensive nor does it give adequate details. What stage were many of these patients in? How many years did they have it for? How debilitated were they? Did any of them have brain damage, which is incredibly hard to reverse? Not to mention the standard for treatment is at least six months, not whatever they seem to be getting at here. They do not seem to take the herxheimer reaction into consideration, if they even know about it- is that the adverse effect they were speaking about?  It’s sad considering how far science has come, yet here we are still denying the existence of many diseases.  There are so many diseases that have been misunderstood over the years and weren’t even considered real yet here we are in the supposed era of technology, and seemingly going backwards.

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It’s not enough to live so just dream.

Stuck in a race, in the wrong line,
when it all came down to me.
And I haven’t had faith in such a long time.

It’s not enough to live so just dream
It’s not enough to say so just scream.
They’ll never know if you don’t let it out
You’ve had enough, they’ll call your bluff
You can’t back down, lost in a crowd
You’ve won the right to scream and shout.
Kelis- Scream & Shout

I don’t know if anyone other than [with an illness] can possibly grapple just how hard it is for me to get through an assignment. It’s worrisome because I argued with my parents about going back to school, said I could do it. I have the support of my friends, I will pace myself, I will be okay. I’m unsure if I lied or not, unintentional or not. The first three weeks of this month were consumed with getting back into the swing of things, largely with moving into the house (which is incredibly tiresome for me, leaves my muscles aching for days) and creating an organizational system that will allow for easier days. The last thing I need in the morning, after I’ve dragged myself out of bed, is to spend two hours looking for my medication and a clean pair of underwear. Thankfully (while I’m still working out the kinks) the system I’ve got is fairly useful. For the most part everything, I mean, everything, has a place. And when you need to look for specific items, such as specific medications (that aren’t everyday) or heating pads( and other items that are fairly important for health) it’s best to have everything place. I don’t need to be in pain and searching for my source of relief for hours on end. After the organization system, there was the doctor appointments, so many appointments- and visits to the pharmacy. I’ve spent almost $500 this month on medication. Between travelling and cleaning, there’s still adjusting to being back and of course to medications.


SO HOW DO YOU TAKE MEDICATIONS?

Medication one cannot be taken within half an hour of medication two (the main medication) and cannot be taken with acidic drinks. If I take it too early, without eating, I will not have an appetite. But in order to take medication two, I have to be hungry enough to eat a decent full sized meal, or I throw up. And of course, I can’t take it with any sort of calcium, two hours before or after, and I can’t lie down after taking it for at least half an hour or it coats my throat with the medication causing a sore throat, and also creates some sort of weird indigestion and heartburn, leading to hours of hiccups.

Right, so no vitamins anywhere within reach of the first two, iron and of course calcium issues. I have to take acidophilus to balance out my intestinal flora but that must within three hours of medication two. Medication three must be taken morning and night and I have to make sure I properly rinse or I get thrush in my mouth (lovely) and a sore throat, and of course if I don’t take that properly I can’t breathe. Medication four is new and that is so far at night, it must always be upright and has a trick mechanism familiar to a rubix cube. These of course, are just some of my daily medications and the rules I must go through.

If I have something with too much calcium, or if I don’t eat enough, I might as well not take my main medication at all, as in case 1) it does not absorb properly and is ineffective or case 2) I spend the day nauseated and throwing up. It’s tiresome, thinking of every single decision I must make throughout the day.


HELLO, HELLO WORLD. I WANT TO BE READY FOR YOU.

Wake up late, because you couldn’t sleep last night? You only got three hours of sleep, even though you were in bed by eight. Schedule’s off. What are you wearing, will you be cold? Don’t have time to think about that.  Can you shower? Are you crazy- you don’t have time for that. Not to mention if you leave with your hair wet, you’ll get a fever and there’s your week gone. Do you have time for a proper breakfast? No. Can’t take medication #2. Okay, take medication #1, but then you won’t want to eat and take medication  #2 later in the day. But you’re not taking medication #1? How are you going to stay awake for class? And without #2, you are in danger of relapsing, didn’t you only take half a dose yesterday? Your joints are going to hurt tomorrow. Oh, they hurt now, huh? You’re limping. Your lungs also hurt, what’s the weather? It’s cold. If you walk, you’ll be late, plus you just left the house on a barely full stomach so you’re extremely tired and hungry and you forgot your scarf. So you can’t breathe. The cold air is burning your lungs. It would probably do that with or without a scarf, it’s too damn cold. Okay, so now you’re limping to the bus. Oh hey, the bus just past you by. Well then. Time to walk back home and call it a day.

YOU ARE NOT HONEST. YOU ARE NOT HEALTHY. But you could tell where I had been, by the way I held my gun. I wish you could see yourself through my eyes. I try to stay close to the light and as optimistic as possible when possible. But some days I am ambivalent, and bitter. And some days, I have a right to be. I’m struggling to live, while so many, [privileged] effortlessly kill themselves. It seems more and more people I know have teetered off the edge, crossed that fine line between moderation and excess. At some point you are no longer “harmlessly” having fun, at some point, it’s your liver, it’s your nervous system, it’s your immune system. Am I supposed to feel sorry for you, that you can’t breathe because you’ve become a chain-smoker? That you are extremely swamped while you juggle your all too many courses and work, while you put that all on yourself? I cannot even manage equal ground, the same footing in walking pace, and some, in the end, cause their own strife. Is that immature of me, to not feel sorry for those in such situations? Is it selfish, because since I cannot breathe myself and did not do this to myself, that I feel no sorrow for those that do?

It’s funny that some who know what I have gone through or am going through have the audacity to call me immature. I will not heed to such a term. I may not necessarily be mature because who really is, but one thing I certainly am not is immature. I may have moments of immaturity, but that is a flaw in the design of human nature. I am not perfect. I do not claim to be. I am not a victim of war. I have not lived through famine, strife, poverty. I have lived a privileged life in many senses, more than most, less than some. Still, I was all too aware of my roots and my surroundings. But I have been through a lot, and I have seen more than anyone could possibly know. I would not call myself sheltered. I have seen enough, experienced enough, to become a little jaded. Children struggling with leukemia; with bashed skulls and one eye; children with hollowed eyes and rope marks around their necks. Children with lost limbs and facial parts, caught in crossfires. These children are stronger than I ever have been. (I try, I try.) If you grow up in such a situation that enables over drug-use, slumdogs and gangwars, I do not condone, but I understand. If you cannot afford another semester and struggle to stay in this one, rushing at every end for the financial, I understand. But so many are over-privileged and sheltered, boredom and impatience their cause. Is it fair for me to say this? Had our lives been reversed, I, of a similar social monetary background, would I be in a similar state? Considering my roots are the same and (while I was constantly tired I was somewhat on par for many years) I still was given every opportunity to follow suit and opted not to. I am not saying that makes me better. It just doesn’t make me worse.

I am frankly getting tired of the constant complaints, so many of which seem so self-centered. I remember my high school years were full of oh no my life is over, my boyfriend and I are over, oh dear, I cheated on him. Oh no, I crashed my BMW because I was intoxicated while driving. Oh no, I broke a heel and daddy cut me off for a week.  The middle class isn’t altogether much better, there is always something. The popularity of the term “FML” has created all sorts of disgusting. That’s another entry for you, anyways.  It’s not even that they’re complaining about surface items to mask their inner emotions, it’s just that that’s all they have to complain about. Sometimes, anyways. I won’t overgeneralize. I’ve ranted about in circles and created excessively long tangents- no worries, who will read this anyways? Just me. Scream and shout. Let it out.

HEY, HEY DEENA. YOU’RE SO LUCKY. YOU’RE ONLY IN THREE CLASSES. Hey, hey, Jessica. I wish I could take five courses like you. I wish that three classes right now wasn’t so incredibly exhaustive for me, consuming what little is left of me, and that reading a remedial novel, these days, feels similar to reconstructing the works of Plato. I wish I could still read Chaucer and Nietzsche and even fucking Jane Austen without having to sit with a dictionary or stopping every five minutes, like when I was thirteen years old.   That I could read a paragraph in one sitting, without the tremor and shake of my hands, the misfiring of neurological synapses and the faint murmuring of an internal dialogue, echoing failure, failure.  I wish I could run to the bus without feeling the stretch of the air infiltrating my lungs, special ops style. I wish I could stay awake for an entire day, without wanting to nap even twice. I wish I could make a proper home-cooked dinner for myself, eat it in one sitting and have energy to do the dishes after. I wish I could walk places without feeling it in my bones, keeping me awake the next two nights. I wish I could write notes by hand without creating a raw in my knuckles.

I wish I didn’t have to struggle to make people understand.

I wish people would realize the little things they take for granted every day.

Sleeping, eating, speaking. Breathing. Living.

I wish, I wish, I wish.

This is me, complaining.

(Never. Out. Loud.)

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Fuck FML. Grow up and get over it.

We all know fuckmylife should really be called fuck my stupidity (and lack thereof of brains and the sort) considering half the people who are going on about their lives completely brought it onto themselves.

It’s not that big of a deal. Shit happens. Your life isn’t actually that bad. You shouldn’t have done it in the first place, probably. Recheck your calendar, do your essay ahead of time, stay faithful to your girlfriend instead of letting her catch you on the kitchen counter with your legs coiled around her little sister by seven months. You should have kept it in your pants. You had to read the textbook like the rest of us. You should have been more careful.  You smoked for twenty years and now have cancer. You should have hid that vodka better. You faint and end up in the hospital because you sucked on redbull for three days straight from a straw, blinking sleepless into an intoxicated stupor. You should have slept like the rest of us. Do you really need a pony? You aren’t any different. Well, maybe a bit more stupid.

Stop doing drugs and fucking yourself up. Or keep doing the drugs, and just stop fucking complaining about the aftermath.

Remember when people weren’t feeling sorry for themselves? Remember when they realized they have it so, so much better than most? Or maybe it was never that way. The people that actually should be saying “fuck my life,” will never advertize it in the same way, because that’s how you know, actually having a fucked up life works.

You know when you can say ‘fuck my life?’ When you wake up shaking with your bones enflamed and creaking, even though you’re only sixteen, and you can barely make a fist. You didn’t ask for this. You know when you can say ‘fuck my life?’ When you’re crossing the road and you are caught in an impromptu-cross fire and you find your nose shot off and your guts hanging out. When you can’t walk for more than five minutes in the cold without feeling yourself heave from the inside, not because you are out of shape, but because your lungs have misshaped themselves. When your muscles deteriorate from the inside, when you’re inbred, when you never really recuuperate because you never reach REM—oh how you would love to be able to sleep, when you need medication just for your medication, when you are abused, used and degraded. When your skeletons have skeletons. Sleeping on the street.  Third world poverty. Cystic fibrosis. Periodic limb movements. Schizophrenia. Brain damage. Cancer. Being born addicted to cocaine. Post traumatic stress from rape, from war. Lupus.  You get my point.

For the record, I abhor the word ‘fuck,’ so my usage of the “word” is not only contextual but pretty self explanatory. (I really do hate to curse, but I shall make an exception here.)

Here is my brittle and unsettling dose of reality for you.  Some people have real problems.

There are so many things you have to be grateful for. Let yourself. Humanity is about making mistakes.

links to my ~feel good~ “i’ll get back up again” mixtapes.

fuck your “fml”

hey, you there. yeah, you, the one that complains about your life all day long. i am so sick of it. you are bringing me down. your life could be so much worse. appreciate what you have. stop wallowing in self pity. look on the brighter side. there’s always a brighter side. you’ve had some hard times? that’s okay, you learned something. you got knocked down, now get back up again.

i made this because i am very tired of hearing people go “fuck my life,” when their lives are not that bad (or often self-inflicted). no one ever seems to look at the positive side and seems to swim in their own selfishness. all these songs are uplifting, about not letting life get you down. the world is at your feet, blah, blah. because you know what? it is. some of the songs only have a few lines that apply, but you get the point i’m sure. the first part is more alternative and the second is more pop. comment if taking please! 🙂  sample & more at my blog.

http://shockoflove.wordpress.com/2009/12/22/fuck-your-fml-rants-mixtape/

TAKE EXAMPLE FROM: GivesMeHope – Like FML, but for optimists!

“I woke up one morning to hear the birds outside my window and my mother cooking breakfast downstairs. I’ve never cried so much in my entire life. I had been deaf since the age of 8.”

“Three days ago, my best friend died. Two days ago, I found that she was an organ donor. One day ago, I heard that a nine year old boy now had her heart. Today, I met that nine year old boy. He told me that because he had my best friend’s heart, he’d be my best friend now. My best friend and him GMH.”

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