ad nauseum

2006-09-27T03:50:00.000-04:00

I left my last entry on such a cheery note... You know, four is a number I really have never liked much anyway. In Japanese one of its pronunciations can be a homonym for death, and is thus considered bad luck or a bad omen by many.

Aside from personal and cultural stuff.... On the Glasgow Coma Scale (GCS or just Glasgow), four is not a number that one wants to score. The GCS is scored from three to fifteen, in 3 categories, based on stuff like whether the patient responds to pain, talks, is oriented, opens their eyes, etc..

I had been experiencing severe neurological symptoms for weeks, had had a bunch of infections (sepsis, pleural cavity, had a hemo/pneumo/junk-o-thorax.. After 7 surgeries in 8 weeks, my body was seriously in bad shape).. SO, they send in a new neurologist, who told me I was just having migraines, needed to pull myself up by my bootstraps kind of thing. (yeah, tell that to my GENETIC syndrome).. He accused me to my face of lying to him... Said to me with my mother sitting right next to the bed: "Well, MOTHER obviously seems to have an overactive imagination." <--- which was bull, b/c what my mother had been saying was all reasonable and supportable by fact and experience.
The pinnacle of his visit was when he told me it was "just migraines" all over again.. I demurely said, sitting on the edge of my bed, "I don't think..." And that was as much as I got out, of my sentence, because he walked over to me and put his face so close to mine that I could feel his breath and little drops of spittle hitting me as he spoke- He loudly and savagely said, "Guess WHAT?! I don't CARE what YOU think!! It's what Ithink that matters." He was gone and down the hall, and I was speechless- stuck to my room by 500000000 tubes and monitors.

This neurologist's visit came at a point when I felt desperate.. No one could tell me what was wrong with me or why I was so sick, beyond the surgeries and infections.. We had our hopes on him, that he would at least try. And instead of listening or 'healing,' he belittled and degraded..
I was SO depressed and felt so very hopeless, and more helpless than ever. I demanded to be discharged, and after some arguing and bartering with my neurosurgeon, I was discharged with the condition that I stay nextdoor.. Which was fine b/c my parents were already staying there.

Anyway... I went downhill. Christmas-Eve morning, I passed out and hit my face, blacking my eye and breaking open my lip. After that, it was downhill really fast.. I began falling that day, and by the end of Christmas Day could not walk at all..

How things progressed after that... It's all really fuzzy.. But I was taken to the ER in early January of 2006, almost totally unresponsive.. And that's where the GCS of 4 comes in....... and since then there's been so much, I just haven't been able to keep up the blog, and here I am one year later.. Diagnosed now with Lupus, overlap of Sjogren's syndrome, peripheral neuropathy, an as-yet unknown hepatobiliary issue.. and headed back to the hospital where I was only barely alive last year..

For now, I say goodbye.

she that riseth

2006-09-11T04:19:00.000-04:00

Well. It has been too long... I don't know if I will have any readers left who will trust me to write and keep up the blog, after this disharmonious lapse.

I left on a breathless note, accumulating fluid around my lung as I scurried across the USA, trying in the brief lulls between travel to get the aforementioned (cerebrospinal) fluid at least temporarily stayed, and myself able to breathe properly..
When I finally did get a thoracentesis [think large needle between the ribs], the ultrasound found lots of scar tissue, which had formed all sorts of little "pockets" of fluid around my lung. The thoracentesis removed somewhere in the neighborhood of 1/2 gallon of fluid from the space surrounding my lung (called the pleural space.. The lungs sit in the pleural cavity, normally surrounded by a very small amount of viscous fluid, said fluid helping lubricate the membranes around the lung so we can breathe smoothly- The normal amount of fluid could be measured in teaspoons. -- After taking off 1/2 gallon, there was still more fluid in there, but the catheter clogged with scar tissue, so I was left short of breath still.

I'm not sure how many weeks, total, I spent not being able to breathe properly and in awful pain from all this- I was traveling, as said above, while all this was going on. When I finally got to my neurosurgeon, I told him that the pockets (or loculations) of scar tissue around my lung indicated the possibility of infection- Every fluid sample that had been cultured for infection had been taken from the reservoir in my skull, and I figured infection could be hanging out down in some pocket and not showing up in my skull- NOBODY would listen to me.. They told me I was fine, that my elevated sed rate and CRP meant nothing, that I would have a fever if I were infected, blahblahblah.. And dammit, I just *knew* I was infected, but not even my (beloved, wonderful, obnoxious, annoying, talented, amazing, ARGH!) neurosurgeon was listening to me this time..

So, come time for surgery, they tell me they will drain my pleural cavity of excess fluid while I'm out. They got in there, didn't drain anything.. Then they took the silicone tubing that was my shunt out of the space next to my lung, freeing it from scar tissue, and then placed that same tubing through my internal jugular vein and into my heart.

I was right about the infection.

For the entire time I'd been trying to tell them so, there'd been an infection hanging out in one of those little pockets of scar tissue by my lung... Stick an infected piece of plastic into the heart and what do you get? MORE infection!
Pleural cavity infection + removal of shunt to R atrium of heart= septic patient. (sepsis meaning an infection in the blood- something system-wide)

So that meant another surgery, with about a zillion incisions, to remove every piece of hardware from my body.. And loads of antibiotics and chest tubes and then a lung surgery, then more chest tubes and antibiotics.. Declared free from infection- Put a shunt back in, the exact same strain of bacteria pops up almost immediately.. More surgery to take stuff out..

7 surgeries in 8 weeks.

That was the bad part for me.. The bad part for everyone else was what came later, that defied logic and explanation.. It was bad for me, too, but not in the same way. I wasn't always there for it.. But the coma and the events surrounding it are another story, for another entry..
The words "nearly dead" were very accurately used to describe me.. For the medical types out there.. I presented to the ER w/ a Glasgow score of 4.

But that comes when next I write.

mm, let's talk eating disorders over lunch, shall we?

2005-10-18T00:32:00.000-04:00

I got an email today, from the president of a University-sponsored club that I do not belong to... I usually just throw them out, but I'm glad I read this one b/c it turned out to be a bit ironic and quite funny, in my mind. Today is definitely a day in which a little bit of humor can go a long way...

The next psych club meeting is this Wednesday Oct 19th at noon in 415 S_. The speakers will be from NUCOPE, talking about eating behavior and disorders. Lunch will be served.
Hope to see you there.

"i am barely breathing, i can't find the air...

2005-10-12T01:51:00.000-04:00

_{[from some stupid 90's pop song]}
'
I am having a hell of a time with even the most minor of tasks- Just sitting here my breathing feels constricted.. Bending to pick something up makes me feel like i can't breathe.. I'm always gasping.. Hauling my bags from the airport yesterday on very crowded trains was awful. No available seats, except for the one that some jerk purposely rushed over to fill when I was about to sit. Gggrrrr. By the time I got to where I was going I felt like just laying down in the middle of the sidewalk.

No I'm not a 98-yr-old chain smoker and/or coalmine worker. I don't think.

There's a bunch of (presumably spinal) fluid collected in my chest, which is quite unpleasant.. I am not breathing easily. I woke up this morning gasping for breath. I mean, I can breathe- It's just labored and never seems like quite enough air makes it.
This is definitely putting a crimp in my plans for this week. My neurosurgeon is just about impossible to reach, since he is Jewish and has a zillion holidays this month..

I am hoping they can do something temporary (like, a therapeutic thoracentesis maybe?) so that I can actually enjoy my upcoming (as in next week) trip to Hawaii for my brother's wedding.

:( It really pisses me off to be always left hanging w/ stuff like this. (^*&&(#@$&*$#@%!)#@$*&

by proxy

2005-09-19T03:18:00.000-04:00

If I but knew the alchemy, I would have you shining in a moment –
these leaden limbs would gleam at every pore.
You would be so bright I could not see, but feel – bask – in the lightening,
I would heal you, love, to see the light again
in your extinguished eyes -
And in my blindness reach out
to fumble at your fall, grasp at
Redemption's product.
I would have you shining for a moment, my eyes white in flame's heat,
Forgetful that gold and dross sink, alike.

I've all but abandoned my blog for a while.. BAD! I decided that a poem (well, a draft- a semi-awful one that i started a while back and abandoned.) might be the way to dive back in. Dr. Charles recently published one, so one could say I stole the idea (tho not the poem! :) from him

It's strange how one can seem sooo busy even when they don't have a whole lot going on.. <---- ME. lol

it's not irony

2005-08-15T04:32:00.000-04:00

Sometimes I have to wonder- really wonder - what the fuck is wrong with this universe?

symbiosis, of a sort?

2005-08-04T16:02:00.000-04:00

Following in the path of fellow bloggers, I formed this entry. Which fact in itself illustrates my point, I suspect...

Dr. Charles recently wrote of medicine in days gone by... And as it can still be, at times, these days. His entry was written in response to one by the Anonymous Clerk.

Charles put me in mind of a conversation I had w/ my mom recently- We were talking about a world in which people, mutually respectful of one another, seek help from others whose expertise outstrips their own in some way-
I go to the plumber, knowing he can fix the pipes. He is respectful of my knowledge in other areas, and is appreciative of the fact that I have sought him out, supporting his way of life.

I feel like it should be similar with doctors.. I am a person, going to another person, seeking help through their knowledge/expertise. It should be a respectful transaction, with each party recognizing the other's intellect and individual knowledge.

Too often, in today's world, one party or the other screws this up. Patients are at times wheedling, disrespectful, cheap, dishonest, unprepared, blameful, etc. Doctors can be paternalistic, arrogant, and all the same things as the aforementioned patient. Or simply forgetful of the fact that their patient should be on equal footing with them- person to person.

Not just in medicine... As humans, I think we all too often forget that we're in this together. _{(this being life, politics, economics, everything!)} The doctor helps Joe today, next week Joe the engineer revolutionizes medical technology.
Hell, the cleaning lady may have a lot more to offer than meets the eye.
The plumber fixes my pipes this week, and maybe next year I write a poem that makes him reconsider his world, his profession, or any number of things.

I have an appointment with my internist today, and I wish I could show him this side of things. Sadly, I'm just another dumb kid toward whom he can direct his superiority, most of the time.

But what of the way these transactions should play out? Perhaps we don't give it much thought, to our own loss.
I wonder, who might there be somewhere that feels like I do about my internist, but feels that way toward me?

Perhaps we should consider one another, and be humbled.

the next country

2005-08-04T00:59:00.000-04:00

Neglect seems to be a pattern of late, most unfortunately.

In addition to some hospital time, surgery, etc... Within the past 2.5 weeks I've lost my two remaining grandparents-

I was asked by the family to write my grandfather's obituary, which I was simultaneously honored and saddened by. My grandfather lived a long and wonderful life, however- And while his passing is difficult I would like to think that he is happy, somewhere in the next country. I would like to think that his parents awaited him, that his brothers laughed to see him again. I would like to think that my aunt, his only daughter, who was stricken so suddenly by cancer, was waiting- her beautiful eyes crinkling at the corners with a smile for the father who had so much love for her, who so anticipated the possibility of reunion. I would like to think so- and perhaps it is so. Who am I to say otherwise?

My grandmother, on the other side of the family, died the day I had surgery. I awoke in the recovery room to news of her passing. Which, though sad, was a blessing; her great pain, her infirmity, her senility- and, towards the end, her fear... all mercifully ended in the quiet hours of her sleep.
I would hope that she, too, was greeted- She lost her mother when she was only five years old, in the great pandemic of influenza that also took her newborn sister. To grow up motherless, forced to abandon her native language totally by her school teachers - These things must have shaped the distance between my grandmother and her own children, her grandchildren and great-grandchildren. I cannot claim to have known her well. But she was loved nonetheless, and I think now about her past- think, she must have had strength beyond my knowing, beyond what met the eye.

They will be missed.

systemic inflation

2005-07-16T07:52:00.000-04:00

O woefully neglected blog.. My efforts are late!
Certainly I haven't been saying anything pithy, or anything at all for that matter! If someone gives me one word or a phrase, I can take it and run, though.. Anyone feel like providing a prompt for me?

[as for excuses... Am in hospital, may have surgery.. before that there was all the air travel.. blahblahblah. ;) minor stuff.] I hope to catch up with all my favorite updates soon, however.

I've lots to do with regard to preparing for the next semester at uni.. Still have to register for classes, nail down the housing agreement for certain, find a way to actually function like a human being...
Small matters. ;-p

The biggest concern of all, as always, is money. I cannot believe the cost of higher education in this country- There is no way the current system and skyrocketing costs can continue on.. The whole system is set to implode at some point.
4-yr degrees, while getting more and more expensive, are also being debased. Having a BA is practically worthless now, given the percentage of people going on to complete uni.. Even grad school has come to mean less and less.. A post-doc is pretty much mandatory in some fields where that wasn't always the case.

The 'dumbing down' of American higher education is pretty scary, pretty frustrating. On the one hand, bringing education to the masses, and graduating greater numbers of college students, seem like good things. Bringing education to those who could not otherwise afford it would be great- and in some cases that's happening....

BUT, for the most part, from my vantage-point I see university studies (and their costs) puffing up like a giant, finite balloon. Who is there that truly gains from all this distortion of purpose/outcome?? Bureaucrats.

Always, it seems, the greedy fingers of bureaucracy are meddling. Not just in education, either. Think tort reform is a plague? I contend that the litigation problems are merely one manifestation of a system top-heavy and stretched out with bureaucracy.

_{Kind of a messy, rambling entry.. Ah well, though, I guess it's something.}

that which causes hope

2005-06-22T04:18:00.000-04:00

His skin was a color of promise- The color of rich soil, the depthless look of burgeoning dark grapes in the vineyards near his home. He had been sitting quietly in a corner of the drab waiting room marked "NUCLEAR MED" in fading letters. There was a girl with him, and it seemed they had been waiting a long time.

Everyone had been waiting a long time, in that cheerless room. Even those who had just arrived. Piece by piece, conversations floating through the stale air turned into stories. There was the little girl who would later share a room with me as she ate a radioactive breakfast ("Careful not to spill the eggs, dear, or we'll have to call a hazmat team."), having been unable to complete a barium swallow after gagging repeatedly on the dense, sick-sweet liquid. While the conversation wandered and patients were called away, the man and his daughter said nothing. They both dozed intermittently as the clock ticked on.

Not until the room was mostly empty did he speak. His English was good, if heavily accented. He had fled his own (unspecified) African country, hoping to start a family and a better life in America.

His hair was cropped close, and I could see the beginnings of grey. Surely he must be the patient. But his glance strayed continually to his daughter, who was now across the room, wrapped in his coat and trying to sleep. There was a desparate look in his eye, that I came to understand as the wild love of a parent who has no power to save their child. Haltingly, briefly, he told us her story.

She was 15, the oldest of his children, and a freshman in high school. She was very athletic and was eager to join her school's basketball team. The required sports physical seemed a nuisance, and she put it off as long as she could. She felt fine, why did she have to go see a doctor to tell her that? Still, she went, and her physical exam was mostly unremarkable. The doctor did notice a small, irregular lump in the soft flesh near her underarm. Probably nothing, it's just a small lump. We'll biopsy it just to be sure, but it's really not a big deal. Don't worry yourself over it. The doctor signed her exam form, and she was free to go.

The follow-up to her biopsy changed everything. Lymphoma. How could it be? She felt fine, she was 15, and she had cancer. The bleak prognosis reverberated through them, yet they stood fast and resolved to face what lay ahead.

Even having shared his own staggering heartbreak, he clasped my mother's pale hands in his own, seeming to read her anxiety over me. "Your daughter, she will go with God now. I feel it, she is in His hands. He will watch her."

Despite all fear, his words were those of promise.

a fateful trip

2005-06-16T02:13:00.000-04:00

I've been a little neglectful of the blog again lately... a lot on my mind, a lot going on, a lot, alot.

For some time I've intended to write an entry about "skittles" or "robotripping" or any of the other names for recreational abuse of dextromethorphan, DXM for short.

Dextromethorphan is a common over-the-counter drug. It's in many cold medications, such as some formulations of Coricidin.. The name "skittles" comes from the Coricidin pills, which do resemble the popular candy. Dextromethorphan is the main ingredient in many cough preparations, like Robitussin CoughGels (which are pure DXM). DXM is used by prescription for a number of reasons, but the OTC market for the drug is huge.
In high doses, DXM is hallucinogenic, with similar effects to LSD. (Hence the term robotripping.)

DXM is the drug of choice for a fairly young demographic. It's popular with junior high kids, and increasingly with some older kids. It's used in lieu of harder drugs for a number of reasons; it's easy to get, easy to use, fairly cheap, legal... It has a false veneer of safety because of its OTC status- Our invincible youth figure, how bad can it be? - It's over-the-counter.

Although DXM itself can be harmful in high doses, often a lot more harm is done when kids use mixed products- Cold medicines often contain other ingredients that kids know nothing about.. Kids take these meds for the DXM, but they're getting other dangerous drugs at the same time.

_{image from Erowid.org}

I had intended to write an entry about the recreational use of dextromethorphan, but there is another significant use for this 'cough' medicine. Aside from the accidental deaths, a growing number of suicides and attempted suicides involve cold medicines containing DXM.

Sunday, the son of a long-time family acquaintance consumed a number of packages of pills, in an attempt to end his life. He has been on a ventilator, in a coma, but is beginning to show some improvement. He is breathing (weakly albeit) on his own, but there's no telling what the future holds for him, or how irreparably damaged he may be.

A sad, desperate 25-yr-old. went tripping toward the edge of life this week. I wonder what he saw.

(And what, or who, was it -there on the brink- that pushed him back toward a life harder still _{(unimaginably so)} than the one he tried to leave behind.)

Dextroverse bills itself as a "DXM community" online. I haven't really delved into it, but it looks pretty comprehensive.
Of course, Erowid is the place to go for drug information.

_{this was going to be an entry full of interesting links and references and facts.. warnings.. but the universe takes unexpected turns, even in small ways. sorry it's not a better, more 'groomed' post.}

smooth language

2005-06-05T03:09:00.000-04:00

I was out with my older sister yesterday, and stopped to order a fruit/soy smoothie for me and a boba-soy for her...

The (rude) "Fruitland" employees messed up my sister's drink and very grumpily corrected the problem after a bit of arguing.

About 1/4 of the way through my drink I noticed the sticky on the cup denoting my order... organ pine straw

Yummy.

"Med-Mal"?

2005-05-31T20:23:00.000-04:00

"Med-Mal fears have doctors on the defensive, study says"

Forgive me, please, but this headline from the Pittsburgh Business Times makes me wonder who funded a study to point out the obvious. Of course you're going to be defensive... In this country, doctors have become the equivalent of wounded antelope in a land populated heavily by hyenas. (<--- i won't dignify that breed of self-serving "human" by calling them lions) Innocent doctors are preyed upon by opportunistic parasites.

Of course there are doctors who deserve to be strung up by their thumbs. In my opinion, though, healthcare professionals need to do a better job of policing their own-- how can judges and juries of totally uneducated people be expected to make fair decisions in these cases?

Our society is all together too litigious- People act as though medical malpractice suits are a unique crisis, when in fact there are many other groups facing similar crises. Private citizens, real-estate and property owners, landlords, even branches of the government. This litigiousness is symptomatic of societal decay. We are drowning by inches in Narcissus' pool.

Oh, and...... Where I come from, it's just called CYA medicine, not what the Pittsburgh writer gently terms as "defensive medicine".

ten things

2005-05-25T17:59:00.000-04:00

Dreaming Again has tagged me to share 10 things I've never done. I am going to take a little bit of a different approach to it, though, to make it more fun. (at least for me, that is. ;)

So it'll be more like... 10 (possibly obscure) things I've never done, but would like to do.

1...I have never walked the Camino de Santiago (de Campostela), an ancient European pilgrimage route. _{The majority of modern pilgrims begin their journey in the Pyrenees, at Saint-Jean-Pied-de-Port, or at Roncesvalles. Some Europeans even set out from their homes. They walk (other means of transportation are used, but generally not considered legit) across northern Spain, about 425-450 miles, to Finisterra: the end of the earth.}

2...I have never taught my cat how to use the toilet. _{Link to an article about a soon-to-be-marketed toilet-training system for felines, thanks to an inventive woman in Australia.}

3...I have never seen a bluebird. _{They do not typically venture into my part of the world, and I've never been lucky enough to see one elsewhere.}

my brain is too tired to finish this tonight, but i feel the need to post something, so here is my pathetic, unfinished attempt. i shall edit and complete it soon.

the good idea

2005-05-23T02:36:00.000-04:00

My father's hands began to shake a number of years ago. _{[He attributes it to CO poisoning from his VW Beetle, which could be true given what CO does to the basal ganglia.]} At first it was just a little tremor, a minor shaking in his hands. Over the past handful of years, the tremor has become more severe and much more noticeable. He has difficulty writing, and it's not just his hands now- His arms tremble constantly, even when he is at rest. He worries quietly sometimes that it will go beyond his arms.

The only other health problem Dad has is mild hypertension. About a year ago, he became dissatisfied with the medication he was on to control his blood pressure... Knowing that he planned to see his rather uncreative physician about some alternatives, I armed myself with information and sprung an "attack" on Dad.

Me: So you're going to see Dr. Doe about your BP, huh?
Dad: Mm-hm.
Me: Have you ever talked to him about your tremor?
Dad: Oh, sort of. He doesn't have much to say.
Me: Welll, as long as you're going in maybe you could show him this article from the NEJM. It's about treating essential tremor with propranolol, which also happens to be a BP med. Maybe you could kill two birds with one stone? Wouldn't that be cool, to actually do something about the tremor? Since you need a BP med anyway?

Dad was intrigued and hopeful at the idea, took the article to his doctor, and started taking generic propranolol. It helped lower his BP and also significantly improved the tremor. After a while, though, he noted that the benefits of the propranolol began to wear off as the day went on. His doctor shrugged it off... So I suggested before his next appointment that he ask about taking Inderal LA, which is a sustained release form of propranolol. So he asked, and Dr. Doe wrote a new prescription for Inderal LA.

The tremor is still there, and still bothersome, but the propranolol makes a noticeable difference. You might say it "takes the edge off" the tremor. _{[Obviously a tremor is minor in comparison to, say, a ballooning aneurysm- But it is an embarassing and frustrating ailment, too often trivialized by those who don't take the time to consider its far-reaching ramifications...]}

Cool story, right? I am telling it not for my role in it, however, but because of a bigger issue- I often wonder what would happen to someone else in the same situation. What if a poor immigrant who spoke little English and had little medical knowledge had gone to Dr. Doe with the same problems as my father? Would the immigrant have received treatment for his tremor? Would my father, even, have gotten treatment had I not been involved?

Why wasn't my father's MD coming up with this idea himself? Why was he so willing to ignore a tremor when there are fairly safe, inexpensive ways of treating it? And then so complacent about his failure later.

How many patients, every day, are losing out simply because they don't know what to ask for?_{(NOT as in asking for a pill just because they saw the TV ad... which is another rant all by itself)} Of course, the patient bears a responsibility to participate in their care, insofar as they are capable. It is the physician's responsibility to make up for the gap created by the differing capabilities of patients to participate in their own care. Why do they so frequently, as in my father's case, fall short? _{[My intent is not at all to villainize physicians- I owe my life to the medical profession- These are merely my thoughts, raw. I hope they come across as intended.]}

One would like to think that all patients are treated equally, but in reality my father's story illustrates what I see as a looming cloud over the medical profession; a lack of quality-control, if you will. How do we remedy such a situation? Where are the legions of patients and doctors who should be willing to improve the situation, at a time when physicians seem to be a threatened breed? Perhaps if we could recognize and respect each others' roles, our healthcare system would not be nearing (or already in) crisis in so many ways.

_{i'll have to edit later... you know it's time to quit staring at the computer when your eyes start crossing from exhaustion.}

"baby" names

2005-05-18T19:17:00.000-04:00

My new kitty cat, Eéva. _{(finnish pronunciation :)}
Adopted from the local animal shelter, Eéva was a stray. She's only about 8 or 12 months old, but bears all the signs of recently having had kittens. She's a bit traumatized-- first she was separated from her kittens and stuck in a tiny cage at the pound. Then she went to the vet to be spayed and get some vaccinations. She had an allergic reaction to one of the medications she was given...

She finally came home with me yesterday, and seems to be doing okay physically. Unfortunately she's terrified of the dog, Hershey, but I am hoping that will change over time. For now I am just keeping them apart. ([The dog is curious, not at all hostile, but it will take a while for Eéva to realize that. Hershey is 1/2 black lab, 1/2 golden retriever, 8 years old, and wouldn't hurt a fly.])

Some of the names I considered for my new friend:

Ronat (means seal in Welsh)
Indra (after the rain god)
Portia (think Shakespeare)
Astrid

Guess I could still change it... but Eéva seems best thus far.

mandatory naptime, feline and human, right now!

good weed?

2005-05-05T15:27:00.000-04:00

Medical marijuana (link to Wikipedia) is such a complicated and huge topic, it's difficult to know where to begin. For starters: marijuana refers to any of the several Cannabis species, and some of their hybrids.

The marijuana plant contains many chemicals which are possibly psychoactive. Scientific knowledge of many of these cannabinoids is somewhat lacking, however. The principle active chemical in marijuana is delta-9-tetrahydrocannabinol, usually called THC. Cannabidiol, or CBD, has also been shown to play a role in the "high" associated with cannabis use.

In the United States, synthetic THC is available as the prescription drug Marinol. This is generally prescribed to quell severe nausea in cancer patients on chemotherapy, and to treat the "wasting syndrome" associated with AIDS.
One might wonder why, if we have Marinol, anyone would fight for the right to use marijuana. But Marinol contains only one of the hundreds of chemicals found in marijuana - A point often raised by supporters of medical marijuana. Many argue that THC alone is not as effective as the whole plant. Unfortunately, federal policies in the U.S. make it difficult to research the efficacy of marijuana versus THC alone.

A new drug, Sativex, an extract of Cannabis sativa, was recently approved in Canada for treatment of neuropathic pain associated with multiple sclerosis-- an approval that has provoked intense reactions on both sides of the medical marijuana debate.
For years, many MS sufferers have resorted to smoking marijuana when prescription medicines are inadequate. The introduction of Sativex provides a legal, regulated alternative to the harsh smoke.

I decided to write this entry after hearing a very short segment of a popular Conservative radio show yesterday... Michael Savage was, in his usual venomous tone, airing his ignorance. He claimed, among other things, that there are no legitimate uses for marijuana. He also said that those who fight for the right to use marijuana for medical purposes are really just looking to get high.

He was so hate-filled and malicious that I couldn't stand to listen to his vitriol for long. I know, without a shadow of a doubt, that there are people out there who truly can benefit from the use of marijuana. To attack them and undermine their cause is despicable.

Was Peter McWilliams "only" looking to get high? This courageous, intelligent man stood up for a cause, and was mowed down by a federal judge. Mr. McWilliams had AIDS and cancer... For some time, he was unable to keep down his medications due to extreme nausea. Marinol and other anti-emetics didn't do the trick. Mr. McWilliams lived in California, where state law (Prop. 215) permits the use of medical marijuana. So he tried it, and it worked. He was able to keep down his AIDS medications, and his viral load plummeted. He was able to live a much more normal life, until the feds got involved. The charges brought against McWilliams were a farce, and many believe his prosecution was politically motivated. He was forced to plead guilty to the charges in order to avoid a mandatory sentence of 10 years' jail time. His mother and sister put up their homes as bond for him-- While out on parole, he was forced to submit to a urine test every couple of days. If he were to test positive for marijuana, his mother and sister would lose their homes.

Peter McWilliams died June 14, 2000. He was found at home in an upstairs bathroom, having choked to death on his own vomit. He was 50 years old. His crime, apparently, was that of fighting to stay alive.

_{This entry is only the tip of the iceberg, unfortunately. There is so much more to the issue than what I've presented here. I urge you, if you haven't already, to educate yourself on this. Sorry if the entry is a bit choppy/ not cohesive.. My brain doesn't always work quite the way I'd like it to. :)}

often we have no choice about our battles

2005-04-29T03:24:00.000-04:00

My body is not very good at cooperating. Apparently while my mind was absorbing all those lessons on "group work" and sharing in the second grade, my body was busy readying itself for battle with... itself. It's a painful battle.

::sigh:: I am frustrated over all the medical stuff lately. Above all, I don't understand why doctors don't listen-- I have never yet been wrong when it comes to my body, my health. Every time I've said a shunt was broken/malfunctioning/siphoning/overdraining, etc, I've been right.

This most recent hospital stay was a nightmare as far as anyone listening to me. At the end of February I told the local docs that the incision on the back of my head was infected. They looked at it and said it was fine, not infected, don't worry about it. I left for surgery, and in pre-op told my neurosurgeon I thought it was infected. He also said it looked fine... So I woke up from surgery to find that, gee whiz, when he opened the incision a bunch of pus came spilling out! They had to debride it pretty extensively and shoot me full of antibiotics for several days. (I am pretty damn lucky they were re-opening that same incision rather than making a new one, or who knows what might have happened before they believed me.) They couldn't finish the operation because of the infection, so they stitched me back up and said they would finish things once the infection cleared.

Also before that surgery, I told my neurosurgeon that, in addition to the lumbar (LP) shunt being broken, my ventricular (VP) shunt was not working. He said that it was fine, he had no reason to believe there was a problem with the VP shunt. Fortunately they were going into the abdomen anyway, so he had a look around in there and found that the VP shunt was plugged at that end. He moved the tubing and cleared away the tissue that was blocking it.

THEN, after surgery, I was very ill. As soon as I would sit up, I would start having huge spasms of my diaphragm... Like hiccoughs X 1000. The spasms were terribly painful. I also began vomiting. The vomiting kept on and got so bad that I was throwing up blood. I told them that the VP shunt tubing had to be sticking me in the diaphragm. And I also told them that it was broken again.
They told me no, it couldn't be broken again so soon because they had moved it, yadda yadda yadda. When I went into surgery for the second time, they found that the tubing was indeed poking me in the diaphragm, and it was also clogged with scar tissue.

Those are just a few examples. I hate this feeling that I am fighting constantly to be heard. I shouldn't have to fight the very people who are supposed to be helping me.

unwanted

2005-04-25T15:32:00.000-04:00

Sometimes the news is so depressing. A twenty-year-old woman, Stacy Dow, of Scotland, is suing the NHS for the tidy sum of 250,000 pounds (nearly half a million U.S. dollars) because of an incomplete abortion in 2001.

At the age of sixteen, Ms. Dow learned that she was pregnant with twins. She underwent a standard abortion procedure, which doctors told her was successful. She was then given a contraceptive injection and told that she may gain weight and/or have irregular periods for a while. She did gain quite a lot of weight, missed periods, etc. She was astonished to learn, at 33 weeks gestation, that one of the twins had not been successfully "terminated," and she was too far along to undergo another abortion.

A healthy baby girl, Jayde, was born by elective caesarian in August of 2001. Ms. Dow is suing the NHS for the "financial burden" of raising her daughter. (Jayde's father died unexpectedly two years ago). Ms. Dow lives at home with the child and her own parents. The grandfather is now holding down a second job to help with the expense of raising the child.

Ms. Dow says she may explain all this to her daughter when she is nine or ten years old. What's she going to tell her? By the way, honey, I really wish you'd never been born. And since you're such a hassle, I really had to sue over it. Oh yeah, and, I underwent a procedure to "terminate" you and your twin, but it didn't work on you.

She claims that she had plans to go to university to study nursing, but had to give up those plans when Jayde was born. She does not plan to pursue any further education in the future.

I'm sorry, but what a bunch of bullshit. There are so many women out there who make it through much worse, and without the benefit of the grandparents willing to let them freeload.

Is this the world we want?

yes, no, maybe, i don't know

2005-04-20T03:38:00.000-04:00

I had been meant to sign a lease yesterday, housing for this fall and the coming year after that...

::sigh:: For better or worse I don't know, but I decided it was a commitment I couldn't make right now. I feel like so much has happened.

Now I feel... Adrift? Disconnected? Uncertain? I have no obligations to fulfill, really, nowhere to be. I should be relieved by the weightlessness of it, but there seems to be an undertone of dread. What now? I seem to be out of orbit.

I had thought I would go back there and live, even if I weren't going back to school. Because I love the city so much.
The school is fine, I just can't seem to justify spending so much money (debt, too) to go there when I am not even sure it's what I want. For all the hype about this private university, its great rankings and academics, yadda yadda-- the university I was at didn't inspire me much. Like I said, it's fine... Just not so great that I can mentally justify spending several more years and many thousands of dollars there.

My parents would have backed me up either way, but I know they are relieved I didn't go and sign the lease. I would certainly have found a job there, but with my ongoing health issues there's no use pretending the financial commitment wouldn't be at least partially dependent on my father as well. So it is a weight off his shoulders that I didn't do it.

So now what do I do? What do I want to do? What can I do? I have already completed many of the nursing prereqs at my state university, and am thinking about making a go of that program. The school in general is not that great, but its nursing program is actually very well-ranked and hugely in demand. Easily the best program at the school. There's a 12 month waiting list for acceptance into clinicals, which would be okay since I've got some of the prereqs and general ed to finish anyway.

::sigh:: In some ways I question if my decision was the right one. Am I shying away because of a generalized fear of commitment? Should I return to university on the other coast? Should I try to strike out and live/work there? (it's not too late)

I haven't been back to the university since my December surgery, I am on a leave of absence from classes. And I have an incomplete grade pending for one course. Because I haven't physically been there, I obviously have not been able to continue the work to get a letter grade for the class. As it stands right now, I won't be back in time to complete the work. Which will leave a nasty "Incomplete" grade on my transcript. :( Unless I change my mind, go there this fall, and work my arse off to finish it.

::Heaves another great sigh:: And here I thought men were the ones with commitment issues... ;)

Something blogorifically scientific next entry, I promise!

MIA blogger returns

2005-04-17T03:28:00.000-04:00

I have been MIA, and am now woefully late in making an update...

This hospital stay seemed to last absolutely forever! I was in for nearly a month, had two surgeries and a number of setbacks. Writing an entry about it seems difficult, I don't know where to begin! But I shall ramble and see where we end up. :)

Perhaps the best place to start is the present - I am home. I flew home the day after I was discharged, which one might say was pushing the envelope, but it has worked out okay.
My list of meds has grown unruly, as is almost always the case after a hospital stay of any length. I have more pills than I know what to do with! Being on steroids (just decadron) really doesn't agree with me, but we're having to taper the dose very slowly since, lucky me, I once again picked up "chemical" meningitis- That is, meningitis caused by an irritant, possibly blood or even my shunt tubing. My CSF eosinophil count has been high, which neurosurgeon says he sees infrequently, but steroids have been the most effective treatment for others with the same problem. (eosinophils are a type of white blood cell, CSF= spinal fluid) The steroids do seem to be holding things down for me, the trick now is to ease off them so as not to shock my system right back to square one.

Pain management continues to be an issue, but things are not as bad as they could be. Prophylactic pain control measures are sooooo very important with chronic pain! Patients who live with pain 24/7 have their own unique set of problems, yet many doctors remain ignorant. Tolerance to medications, pain "patterns"... It can all be pretty complex.

I've got to get in and have someone look at my eyes, to see how the optic nerves are doing these days. My vision has remained a little screwy, thus I am actually apprehensive about that. The nerve swelling does recover gradually, so I need to exercise patience, but it is still a little harrowing. Just to see, and see normally- Ah, how ignorant we are of bliss until it's passed us by!

The myoclonic jerks seem to vary in severity now.. They were surprised to find that my EEG showed no epileptiform activity. A big relief that it's not epilepsy, but the jerks and twitches can be quite a problem nonetheless. My legs are impacted most, but the worst for me is my jaw. I've got TMJ problems as it is, so having those muscles move without my consent is insult to injury a lot of the time.

Ah, ramble ramble ramble. It's good to be home. It's time for bed!

BLAHHHHHH.

2005-03-26T15:15:00.000-05:00

_{wrote this last night, but couldn't save so here you have it-- leftovers}

Still in hospital... *sigh* There's been some recent beaureaucratic upheaval that has had a number of the "old" (translated: good) nurses to greener pastures, but in general things are holding together and haven't been too terrible.

I'm almost at two weeks here. Not at all what was planned. If surgery (#2 for this admission) on Monday goes okay, I hope to be the hell out of here (not just hospital, city too) by the end of the week.

One thing that is concerning me slightly (more annoying, really)..... is my EEG. They did the regular 45-min test, and had a neurologist come talk to me for a few minutes while I was all wired up. Nicest neurologist in the world, and seems pretty damn smart in addition to being humane, kind, etc. _{(other than the fact that he now seems to be blowing me off...)}

The day after first EEG, the same bubbly tech knocks at my door, tells me I've got to move to a room that has video surveillance so they can watch me while doing a 24-hr EEG.
All the tech could tell me was that Dr. H had seen something 'abnormal' in the initial test and wanted to gather more data.

More than 24 hours passed, and my neurosurgeon finally came in to ask if they could do a spinal tap and see if lowering my intracranial pressure changed the EEG. Of course I said yes, mostly because the tap would temporarily relieve my miserable headache... He still couldn't tell me what seemed wrong with the EEG.

Up to speed now, basically... After 3 days, the wires came off and I still knew nothing. I mentioned to the tech that I still didn't have any idea and she plastered on a huge fake grin, saying through her teeth that she was sure I'd see Dr. H soon.

.... All of that took place last week, and I was told yesterday that Dr. H would come see me in the afternoon. He never came.

One of the neurosurg residents, upon questioning, said that they know nothing beyond the fact that the results were abnormal... !#&**&$(*@

I am so sick of being here.. But if I weren't, my pain would be worse than it is now (which is pretty damn bad, I'd be dehydrated, vomiting, etc.

Whine, whine, whine. OWwwww. I figure since it's my blog I can bitch and moan, though that didn't start out as my intent.

I'll probably "recycle" a few of my earlier, more science-y posts.

Ugh I tried to add on a bit for todAY- sooo much pain and loudnes, my clumsiness.. there's jst no way. brain-fingertip payhways seem to be blocked off indefnitely.

still in hell

2005-03-19T10:53:00.000-05:00

Quick entry, from this boring and painful place..

Surgery did not go as planned, so they'll have to go back in again. We are arguing the details of that a bit right now. *sigh* The infection on the back of my head must go away before we do anything... Unfortunately they weren't able to get good cultures b/c they didn't find the infection until they had already given me the standard IV antibiotic.

The really annoying thing is that I told them a few months ago it was infected. God forbid they believe me.

I am currently on a 24/7 video-monitored EEG... There does seem to be some seizure activity. Strange waves.

So tired.. sick of arguing with these people. My neurosurgeon is great, but we have a tendency to argue about EVERYTHING. Good thing it is friendly argument. I guess.

Head hurts. *sigh*

Signing off for now, just loving my time in hell. :( I was supposed to be going HOME tomorrow!!!! Instead I have to wait with these wires on, be discharged, wait, come back for more.

:(

And my hair is gone. Just fuzzy, scarred scalp. *tears*

the holy water is causing problems again

2005-03-13T17:06:00.000-05:00

I have a number of entries I am planning to write, once I'm back on my feet. Even a funny one!!! Imagine it... ME, write something humorous?? It's in the works. :)

Before I get to the "publishing" stage, though, I have some unfortunate business that needs to be attended to. Surgery first thing tomorrow (Monday the 14th) morning, so I am not quite sure when I'll post again.

My head may look like this again, only imagine it *plus* another (much larger) incision towards the back, and a few smaller cuts as well. Actually, I *might* be able to salvage my hair somehow this time. Maybe. Fingers crossed!! If it looks anything like a comb-over, though, the clippers are coming out. My neurosurgeon (not the one who made the cut pictured) is careful about shaving as little as possible, so we'll see.

Two words that I intend to remind the neurosurgery team of in the morning: OPIATE. TOLERANCE. _{(Hell, it doesn't even have to be opiates. Substance tolerance.)} They seem to forget every time, somehow, and are then surprised when little teeny doses of meds do nothing. I am so used to all the different medications used pre-op and post-op that the "normal" routine just doesn't work for me.

Sure hope they've figured it out by now. The resident on call this week is the same one who let me go the entire night after an open abdominal surgery with no pain meds. None. I hate him. :(

_{my very rudimentary rendition of the ventricular system.. from memory, so forgive me if it's awful. :)}

advice for humiliation

2005-03-05T02:24:00.000-05:00

A situation that is haunting me... Yes it's in the past, but the memory keeps tugging at me. It leaves me wondering, What should I have done then? What can I do now to make peace with the situation? I so wish I knew the answers.

What happened was this:

In 2004 I was at school on the east coast. (i'm at home on medical leave at the moment) I had a new GP there who seemed great and was affiliated with a well-known and highly respected teaching hospital.

In October, I suddenly developed all the symptoms of shunt failure. As it was a Friday, my GP advised me to go to the ER at her hospital, which I did. The ER docs were excellent. A CT of my abdomen seemed to show something wrong with the distal end of my lumbar shunt. A spinal tap showed that I did indeed have high intracranial pressure. The ER docs felt it would be best if I were admitted overnight for pain control and neurosurgical evaluation.

My optic nerves looked fine at this point. Which is consistent with my history of not showing papilledema (optic nerve swelling) even with very high intracranial pressure. There is a decent body of medical literature out there about intracranial hypertension without papilledema. It's a well-documented variation of the syndrome, and ICP cannot be judged by the state of the optic nerves alone. Some people, like me, do not show papilledema most of the time but then mysteriously have it at other times. As of yesterday, my nerves were badly swollen.

So, I was admitted to the hospital under the care of one of my GP's partners-- We'll call him Dr. Gold. He seemed nice, and called for a consult with pain management. The pain doc came by and prescribed a muscle relaxant and increased my dose of amitriptyline. A neurosurgery fellow came in and went over my history, etc. I was then told I should stay for a psych consult- the psychiatrist on call that weekend came by, seemed nice enough, okay.
Saturday the chief of neurosurgery also comes by and takes a thorough history. I never see him again.

I lose some time... God only knows what happened, I was so sick, upset, tired, bored, lonely, that I really don't remember.
They still don't discharge me or offer to fix the broken shunt. It's now Monday and a different psychiatrist comes around. Dr. Gold comes by with one of the fellows from clinic, and I am under the impression that neurosurgery is still considering the shunt problem and best approach to management.

Tuesday the psychiatrist comes by again. I complain to him that neurosurgery has not been back to see me since Saturday, and that I am also clueless as to what is going on- And one thing I do not like is being left in the dark. He asks me if I might find it helpful to meet with all of the doctors so that they can all talk to me at once and tell me what the plan is. I agree that such a meeting is a good idea, and he leaves saying he'll set it up.

Wednesday, no meeting. On Thursday, six (count 'em) MD's walk into my room and stand around my bed. Now, I don't know about you, but my idea of a meeting involves sitting down on equal footing to talk to these people. It is highly uncomfortable for me to be entirely alone with no friends or family to support me, and so many people towering over me in the damn hospital bed. This is not the kind of meeting I had in mind. But okay, roll with it, it's okay.

Dr. Gold is there with a couple of his associates. The neurosurgery fellow is there. The psychiatrist is there. The chief of pain management is there. Here comes the humiliation.

The neurosurgery fellow takes the lead and tells me there is nothing wrong with me. Nothing. I am absolutely stunned. I thought I was done dealing with people to whom I have to prove my history. I counter him with questions about shunt function and my clearly abnormal opening pressure from the spinal tap. He blows me off in an extremely rude manner.

Me: Tell me how I knew my shunt wasn't working, then, if there's nothing wrong with me?
Neurosurg: Well I think your shunt hasn't been working for a LONG time and you just happened to choose to come in now.

What? What the hell is he talking about? Why is he talking in such a condescending manner? Why would I lie about something like this? I tell them that unfortunately, yes, I do have pseudotumor.

Pain Mngmt: But you don't have papilledema. You can't have pseudotumor without papilledema.
Me: That's not true. There are plenty of cases- It's called pseudotumor cerebri sine papilledema.
Pain Mngmt: [turning to neurosurg] Really. How often does that happen?
Neurosurg: [looking directly at me] It DOESN'T.

Who is the pain guy going to believe? The young patient, or the "experienced" neurosurgeon? Surely not the patient.

Me: What about the Chiari malformation?
Neurosurg: You don't have that, your MRI is fine.

Not exactly. The MRI that he was looking at was very old, done before I ever had a shunt. I did have 4 mm of tonsillar herniation in those films, which by itself might not be considered diagnostic of Chiari I malformation. But with a retroflexed odontoid, flattening of the skull base, and a heap of other "small" abnormalities it all adds up to decreased CSF flow, a crowded foramen magnum, and a diagnosis of Chiari I.

In my more recent MRI, which he did not look at, the herniation was much larger, and the CSF spaces around the cerebellum were all but obliterated. Cine-MRI showed greatly decreased CSF flow both anterior and posterior to the cerebellar tonsils.

Dr. Gold: That diagnosis was based on a bad paper from an even worse journal. You do NOT have Chiari.

What?? Why are these people talking in such militant tones?? My regular neurosurgeon is considered one of the leading Chiari experts in the country. He has worked with these people and they know him. They know that he is well published and respected.

Me: But Dr. Frim is the one who diagnosed me with Chiari. Haven't you talked to him about this?
Dr. Gold: Doctor Frim agrees with us that there is nothing wrong here.

A bit of fear ran through me. I know my neurosurgeon better than to believe that, but... what if he really did agree with them? Who was going to help me now?

At this point I began to cry. It is rare for me to cry about anything at all, but I was caught so off-guard by this. Like being punched in the gut. I didn't get it- why didn't these people understand? Why were they being so hurtful and insinuating that I was only there seeking some kind of sick fulfillment? They all but said the word Munchausen's.

Tears literally pouring down my face at this point, I could hardly talk.
Enter Dr. Gold: Well, Bronwyn, what I want to know now is why are you crying? We just gave you GOOD news. Shouldn't you be happy about that? What's so upsetting about the great news that you've just heard?

Me: [literally choking on tears at this point] I am crying because you're wrong.

Things went on from there, but writing it out in this detail is just upsetting me all over again. One of Dr. Gold's fellows literally shouted at me at one point, after I asked why they bothered to keep me in the hospital for so long if they didn't plan to help me. She took this as a personal insult and totally lost her cool.

Nothing is wrong, nothing is wrong, nothing is wrong. So discharge me then. Fine, we will. We've scheduled you for an ophthalmology consult tomorrow morning, even though we know it won't show anything. All you need to do is follow up with psychiatry, because we think this is more of a psychiatric case. And check into acupuncture sometime.

They shuffled out and left me there, sobbing because I felt so let down. I had trusted these people. I stayed in the hospital for almost a week believing that they would help me. Instead they pulled the rug out from under me. Told me it was all in my mind. But go see the eye doctor anyway.

I was so upset I very nearly cancelled the eye appointment. But I went, and after a dilated exam and photos of my optic nerves, guess what the ophthalmologist's final diagnosis was?

Pseudotumor cerebri, chronic. I hope to God that the ophthalmologist's letter made it to every single person who was in that room brow-beating me for almost an hour.

There are a few crackpot neurosurgeons out there who will diagnose anyone and everyone with Chiari and do surgery on them- These neurosurgical "hacks" do exist, and have even been featured in mainstream media for their radical practices.

My regular neurosurgeon is not one of those hacks. He is chief of pediatric neurosurgery at a large teaching/research institution. He publishes frequently in respected, peer-reviewed journals. He treats both children and adults with Chiari and related problems such as pseudotumor.
My brief fear that he agreed with those six doctors was unfounded. He backed me up, and helped me where they would not. I never have to see any of those six people again.

But that "meeting" still haunts me. What did I do so wrong that they would not help me? That they decided I was crazy? What can I do to seek closure? How can I restore my dignity? How can I let them know that what they did wasn't right? That it was hurtful and humiliating? Indeed, that it was the most humiliating experience I have ever faced?

Maybe I didn't portray the situation very well in my writing here, I don't know. Writing about it has me crying again, though, and my back is sore from today's spinal tap. Severe papilledema and my highest opening pressure ever. I wonder what they would say to that.

I'm so upset about my current situation, the past, just.. everything health-related right now. I wish I could wake up one morning and just ignore all this. As if that were possible, when my sight is at risk and my head is pounding.

God knows if this entry even makes sense. So much for keeping my chin up tonight. I'm sure things will look better in the morning, though.