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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I spent five hours at the hospital today…

…not even in ER, but simply doing pulmonary function tests and giving blood, oh and waiting for doctors and spending more time with them. Seriously now.

In other news, I am slightly more so coherent than I was a few months ago, so that’s always good. No more word conjoining for you, crazy one!

At least, all the time.

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In other news, I have an eye patch.

I haven’t written in a while. Truth be told, recording my lack of progress is slightly depressing. I wanted to write so many times, but I just couldn’t get around to it. Rewriting dialogue over and over in my head isn’t exactly the same.  I have been trying to get through this semester, but in the process, I rarely was able to stomach my doxy. Between balancing it with other medications and the nausea it gives me on its own, I was struggling. Throwing up again, tired, crazy. My doctor chastised me at my last appointment for not telling him I was having issues. And in the meanwhile, while some things, like the peripheral neuropathy seem to have gone away, other symptoms have been worsening.

I’m now on Azithromicin, and so far I’m alright. But the medications I’m on- so many, or so much is just constantly in me. Indomethacin, Ponstan, Mirena, Advair, Spiriva, Iron, Vitamins. The main few that I should be taking often. There are the alternates, of course, which I won’t get into right now. I’m nauseated right now and I’m not absolutely sure why because I haven’t even taken anything yet. I took Tridural last night,, which didn’t even seem to help, so I can’t imagine that it is from that, or my Advair. I really don’t know.

I’m still twitching, my muscles, that is, my lungs still ache, I still have arthritis. I still have bad headaches,  my brain is still foggy-but what has been bothering me the most lately have been my eyes- along side the headaches. The same eye that has ptosis (that is constantly moving, different “drooping lengths”) has had floaters in the eye, trouble seeing up close, eye pain, blurred vision (etc) for over a year now.  But it has been getting worse, so much worse. There were times when the eye pain would keep me awake at night and always have I been affected by too much light or too little light- but it has never been this bad. More and more I have trouble seeing for longer periods, sometimes in both eyes but usually in the left eye, the same eye with the ptosis. I woke up this morning and once again, I was so, so incredibly scared. I couldn’t see. I mean, yes, I could see, but the vision was a combination of double vision and blurry for quite some time. It has been like that after straining- reading or anything of the sort, but it has been getting worse.

My doctor called for an (another one, more specific) MRI on March 25th. It takes a few days for them to process it and a week or so for the radiologist’s report. By April 5th they had already called me to book an MRI. Last time, before I had a diagnosis, when it was from a (hate to say it, but good for nothing-) neurologist who thought I had fibromyalgia,  it took me months to get an MRI and a lot of harassing to get it earlier. This time, I suppose with my LLMD giving an accurate portrayal of what’s wrong and asking for a specific site…they called me right away, as they had a cancellation and the radiologist had marked my case urgent. I was in Winnipeg, though, and couldn’t get it done obviously here in Toronto. So now I’m booked for their next (earliest) available time, which is May 8…at 4:30 in the morning. But I was told to keep calling back until then to see if there are cancellations. Fingers crossed.

But this made me even more scared.

Optic neuritis is the inflammation of the optic nerve that may cause a complete or partial loss of vision. [wiki:]

Optic neuritis is inflammation of the optic nerve, the structure that connects the eye to the brain. The optic nerve consists of nerve tracts (axons) that originate in the retina of each eye. The optic nerve carries visual information from the retina to the nerve cells in the brain stem, where the information is relayed to the area of the brain that recognizes vision (the occipital cortex).

Optic neuritis can occur in children or adults and may involve either one or both optic nerves. Optic neuritis typically affects young adults ranging from 18-45 years of age, with a mean age of 30-35 years. There is a strong female predominance. The annual incidence is approximately 5/100,000, with a total prevalence estimated to be 115/100,000.

The most common etiology is multiple sclerosis. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. The presence of demyelinating white matter lesions on brain MRI at the time of presentation of optic neuritis is the strongest predictor for developing clinically definite MS. Almost half of the patients with optic neuritis have white matter lesions consistent with multiple sclerosis. At five years follow-up, the overall risk of developing MS is 30%, with or without MRI lesions. Patients with a normal MRI still develop MS (16%), but at a lower rate compared to those patients with three or more MRI lesions (51%). From the other perspective, however, almost half (44%) of patients with any demyelinating lesions on MRI at presentation will not have developed MS ten years later. Some other causes of optic neuritis include infection (e.g. SyphilisLyme diseaseherpes zoster), autoimmune disorders (e.g. lupus), drug induced (e.g. chloramphenicolEthambutol), and vasculitis.

Optic neuritis causes vision loss, which may be mild or severe and may occur in one or both eyes. Loss of vision may occur over days. Vision in the involved eye or eyes can range from almost normal to complete blindness. Color vision may be particularly affected, but the person may not realize this. There may be pain with eye movement. Depending on the cause, vision usually recovers within a few months. However, some people have repeat episodes of optic neuritis.

My eye hurts so effing much, and I have an exam tomorrow and I’m exhausted and nauseated and my bones hurt. And I can’t see that well. I’m going to put this damn eye patch on which I don’t know if I should be wearing, but oh well, and I really don’t feel in the mood to be a pirate but I have no choice, I suppose. Keeping the eye open and using it hurts more than anything. God, I think I’m going to throw up now.

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I saw a squished ladybug on the sidewalk today. I looked at the dead little thing and thought, I know how you feel, little one, I know how you feel.

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Lyme updates.

Stolen from CanLyme’s twitter.

During an antitrust investigation of the IDSA guidelines development process for the 2006 Lyme disease treatment guidelines, AG Blumenthal’s office uncovered significant procedural deficiencies, including conflicts of interests of the panel members. A settlement was reached, and the IDSA is breaching it. The IDSA is manipulating the voting process to favor no change in the guidelines. The AG has sent the IDSA a letter requesting that they redo the vote in compliance with the agreement. The IDSA used an “improper voting procedure,” based on a process of its own design, which blatantly violates the Settlement Agreement and undermines the integrity of the voting process.  The IDSA consented to the voting procedure in the Settlement Agreement and confirmed its understanding of the required voting procedure in an internal memo from the IDSA to the panel before the panel met”.

CBC Radio interview, death by Lyme disease, poor medical system

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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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