my favorite teachers

now that i am almost done with school i can blatantly list my favorite all time teachers (in no particular order):

-Miss Joslin- 4th grade.... she had weekly auctions to teach us math.. what an incredible incentive for someone who HATES math
-miss hunt- 1st grade- she made school less scary
-miss healy- 2nd grade- i loved her
-dr. anne wiley- community college- she made me want to go on to get my BA
-prof. mccarthy- community college- made me view the world through different lenses, and taught me about disability rights
-prof. larose- community college- taught me about the world outside the US, left politics and made me question everything
-katherine mallorey- academic advisor- life saver
-and lucky me, ALL my professors from this semester: strunk, ford, wilson, rudy, el-hibri... what a way to leave my undergraduate education! it's been a rough but enlightening semester- and i wouldn't have wanted it with any other group of teachers... i have learned more this semester than in perhaps my entire 22 years of education! thank you from the bottom of my heart... and now, i am going to stop procrastinating... and finish my work :)

a lack of blogging

To anyone who may have followed my blog: i am sorry for ditching you for almost a month now!

but i have good excuse! in the last month i've been in the emergency room at least once per week. i have gone from taking 3mg. of steroids to 60mg. my hair has fallen out a little on the front, my skin is covered in eczema and in general, i feel miserable. i've had anaphylaxis to asthma. hives to a runny nose. and most importantly, the dreaded finals which come at the end of a semester- or which i have yet to complete.

i hope you will remain my loyal readers... i just need until sunday to finish my finals and then i promise, i will be back... perhaps not in good health... but always in good cheer.

take care all you sickos out there, we need eachother.

Personal Heroes

Over thanksgiving i had an interesting conversation with my family. I started mentioning my list of personal heroes and they soon realized how extensive my list is... but you can never have too many heroes. one person in my family discovered she believed she had no heroes and decided she must find one for her own. I told her, "it's easy to have heroes if you listen to peoples' stories."

there are people out there who've had to be the first of their kind to pave the road for the rest of us. because of them, my life is easier and for that, i am grateful. so here's my short list of heroes in no particular order:

- Ted Kennedy
-Nelson Mandela
-Gandhi
-Dr. Joslin (inventor of insulin)
-Clara Barton
-Mother Theresa
-My Parents and Brother
-My godmother Tricia
-my family friend Jeanne
-my great aunt ruth
-Harriet Tubman
-FDR because he was in a wheelchair during his presidency
-JFK because he was president with Addison's disease
-Hillary Clinton
-Barack Obama
-Anne Frank
-Salvador Allende
-Frida Kahlo
-Martin Luther King, Jr.
-Bobby Kennedy
-My friend Katie L.
-my grandma Constance
-Lincoln
-my 4th grade teacher Miss Joslin
-etc.

Double D and JFK

It's official. I'm a Double D- double diseased. Actually, I am triple diseased. But doubly scary diseased. 5 minutes ago I was formally diagnosed with Addison's disease. Now not only do I worship JFK, but I'm biologically diseased like him.

It makes me scared but rather proud because every time I feel like vomiting in the wake of this new information, I merely stare at a picture of my hero and think, if he can have this and become President, I can do anything... I can be anything and I am not going to merely be defined by my disease. I am capable. I am able to be the person I imagined I'd become as a child. I may be a Double D, but I am so much more. And look at my heroes and what they've accomplished. Thank you JFK.

Halle Berry has Type 1 Diabetes. She's pretty cool. I always wonder whether she gets anxiety about having low blood sugar on set because I know that's something I'd worry about. I think it's pretty courageous that she rocks out with her Diabetes too. Sometimes when I feel a little down about my diabetes or think that my insulin pump makes me look ugly... I look at a picture of Halle Berry and think, that's right, Us diabetics are hot too.

I guess right now I'm trying to swallow my fear with this new diagnosis. It's a lot to bear. It's scary and I want to feel alone, but I know I'm not. I know if JFK knew what was going on with me, he'd look down and tell me I'm not alone. And I've got Halle Berry. And I've got all those millions of people who have similar and different diseases right behind me- even if they don't know it or me. We are all in this together. We're all riding the same one-way escalator. We've got to have each other's backs.

So even though I am a little scared on this Dianosis Day, the 25th of November 2008, I know I can do this and I know I am strong.

I think I'm going to say in like fashion of the Kennedys, ask not what you can do for yourself, but that which you can do for others...

Kennedy Returns to Push for Health Care Reform

Chemo Recliners

Last Monday, i had my first introduction to the Chemo Recliners in my local hospital. They're on floor six, wedged into a small corner labeled the infusion room. It's an interesting place that i am positive resembles some semblance of limbo. people hang in this room from the narrows of some small cord- usually the IV line that translates into a life line. like i said, it's an interesting place somewhere between life and death.

the chemo recliners are not only for cancer patients, especially seeing as that i don't have cancer. but mainly, cancer patients occupy this narrow space. anyways, on monday morning i took my official place in a chemo recliner to be tested for adrenal insufficiency, otherwise known as Addison's disease (JFK had it). for the first time ever, i found myself in a room of sick people where i was not the sickest person. i felt awkward and uncomfortable. these people were facing near death. for one lady, this was her first day of many in the chemo recliner. she came in energetic. her husband dropped her off. no doubt she told him not to stick around- no biggy, it'd be over soon is what i bet she thought. but as the hours passed and the chemo dripped each drop into her veins, i saw the expression on her face change. she now understood. the complexication introduced her to the reality of chronic illness. it is never over quickly or simply. it's complicated, drawn out, draining, tiring and never ending. yet, i doubt it was the chemo that brought upon her realization of her new situation. see, after hours of sitting there, listening to us other old-timers, i think she began to realize the gravity of her situation. it's not because she has cancer that the scenario is dire, it's the hurdles she now understands she shares with each of us sickos... the hurdles are both commonly held and differently experienced by each differently diseased person... that's what a diabetic and cancer patient have in common- they're part of the same complexication that makes each of their lives so hard to navigate. it's what i understand of what it must be like to have HIV/aids, TB, SARS, malaria, cancer, MS, etc. it's not that i know the individual experience of HIV, the suffering and specific agonies. but i understand the system that accompanies every disease, malaise, and illness.

anyways, i sat there and watched the newbie transcend her innocence- let me remind you she is 65 whilst i am 20-something. yet in this instance, i had age over her. my medical age, my disease age is 10 years going on 11. her disease age is minus 1 year. but like everything, she'll age. that's the thing about chronic illness, it has its own years and counting system just like the dog years pet owners go by. many older people whine when i speak of how old i am- they say i should enjoy my youth before it's gone. but what they fail to understand is that in medical years i am already far past my prime. i am 65.

so i sat in my chemo recliner, not receiving chemo but counting my time, in sick years. like the others, i occupied a special limbo reserved for those somewhere between life and death- not quite one or the other.

Tired

Sorry I haven't been posting much. I've been a little tired of late and a little overwhelmed as both finals and graduation approaches. In addition, I have been prepping for the LSAT. On a side note, I was denied accommodations for the LSAT in regards to my diabetes supply. It's a long story and I'm too tired to write about it now- but more on that later.

Friday was a busy day. In the morning I met with legal councel at Massachusetts Committee against Discrimination to discuss my GRE experience. I cannot really remark on what went on due to the sensitive nature. But what i will say is this: MCAD is amazing. If anyone feels they've been discriminated against in Massachusetts- please seek councel from MCAD, they will help you.

After MCAD, i had an endocrinology appointment. Non-diabetic related. Suspect Addison's disease... it's somehow related to Type 1 diabetes and also has similar symptoms as the ones i have been experiencing. tomorrow morning i am going into the hospital for testing- so we'll see.

I went shopping today for work clothes- real work clothes. not only are suits stiff and drab, but they really have no good place to put an insulin pump. all the pants have either fake pockets or pockets that are too small to fit a pump. i am thinking of sewing a pocket on the inside of the suit jacket. someone should start a company that makes business clothes or clothes in general for pump wearers- it's always such a hassle finding clothes that fit properly with the pump. and my pump is attached to me at all times, so it must always be considered when shopping for new clothes- especially dresses. i am so happy that dresses with pockets is the newest fashion fad. i almost jumped for joy!

i am so tired. i am only allowed two hours of sleep tonight. tomorrow morning i am also being tested for epilepsy... i really doubt i have it but my doctors want to test me for everything that causes the various symptoms i've been experiencing... i am so desparate for answers and solutions that i'm going along with whatever they say- which is not usual for me- i usual protest more.

so anyways, i guess i'm not supposed to sleep for more than three hours before this test. i am thinking about getting some coffeee... hmmm...

well i hope you are well and as healthy as possible. i'll write more later.

Denied Again

Okay people! this sicko followed the rules. i applied for accommodations for my LSAT and guess what (?)! i was DENIED ALL ACCOMMODATIONS. i was told i could reschedule the test and try to apply for accommodations again. the only problem- if i take it after the scheduled date i have to wait a whole extra year to apply for law school. and guess what, i need to be in school next fall for health insurance reasons. therefore, i must take the LSAT without accommodations. which means, by the rules, my insulin pump is illegal. thus, i am going to have to sneak it in and pray my blood sugar doesn't go low. so see, even if you do play by the rules, you get screwed as Sicko in this society.

Navagating the Loopholes and following "The Rules"

so today i made my rounds to the doctors, collecting the various documentation necessary to receive accommodations for the LSAT. the process of collection has been long and obnoxious. i've fought with doctors to sign the paper work, the bureaucracy at school to support the paperwork... which i'd like to add, my university's disability services proved beyond obliging and helpful - i am forever grateful. i paid $20 to overnight the paperwork and now i sit... and wait... with my fingers crossed because lets face it, even with a bible of proof, nothing is guaranteed, even for a diabetic test-taker. it'd be obnoxious to follow the rules only to still be denied. maybe i'd have to write the globe for them to do a follow-up on how even when you play by the rule book disabled americans still get systemically denied. i'd be interested to read the comments section on that article.

i saw no less than three doctors today. they all said the same thing- i am a medical anamoly. no suprise. just more prednisone. i had to get my flu shot and thus, i had to up the prednisone so as that my immune system wouldn't rip me apart. i have my fingers crossed on this issue too.

another finger-crossing issue is the nomination of lawrence summers, former president of harvard, to obama's short list for secretary of treasury. harvard fired him for a reason and a good reason at that. anyone who thinks women are intrinsically different and thus, less able at math and science, should not be elected to any short list unless it is the short list to the door. like i said, i have my fingers crossed.

Peter Logic

The Insulin Pump Phone and The Diabetic Cashier

So Today, almost like every day, i went to the grocery store after class. I am utterly incapable of writing a grocery list for a number of reasons, and thus resort to grocery shopping every other day. The first reason being, every time i write a list i misplace the list. Second, i never remember to even write the list in the first place. and finally, something about buying a week's worth of groceries and then seeing the total after everything is rung up, makes my stomach cringe. i don't like spending all my money in one place at one time, especially when it's whole foods. they should have discount prices for those with food allergies - i am essentially reduced to shopping at whole paycheck. therefore, i'm always at the grocery store.

anyways, one of the cashiers at whole foods "happens to have diabetes". by the way, i hate that phrase, but i employ it to satisfy my fellow pickier diabetics- the ones who claim "they aren't diabetics, rather they are people who happen to have diabetes." call it what you will, you have diabetes and thus, you're diabetic. but hey, i'll respect your label preference in writing.... but in spoken language, all that "happen to have" stuff is too much of a mouth-full for this diabetic!

where was i? oh yea, the cashier. anyways, since i go shopping everyday, i already come across as an oddball to most of the cashiers. but the diabetic one knows me. we have an understanding. but here's my conundrum, if i go to her aisle, i always feel like she's counting carbs with me as she slides my items across the counter. pizza: 63 carbs; loaf of bread: 27 carbs per slice; yogurt: 28 grams o carb... and then comes my habitual pint of ben&jerry's and the true sign i am a 'bad' diabetic. i am an ice-cream-a-holic. thus, when i go through her line, i am reduced to poking fun at myself and my bad diabetic-ness. she goes along, she's my age and understands that diabetics need their ice cream full just as much as any other. i don't think she even judges me. but because she's diabetic, her knowing that i'm buying ice cream, makes me judge me. and it drives me insane with guilt. i've even cut down on ice cream consumption to avoid this fateful circumstance. i buy more veggies and good things. and i just buy my ice cream at the cumbies market located a few blocks from my house :) whoops. but what am i to do? i am stuck for a number of reasons...

first, if i start using a different person's line, they'll judge me for being an ice cream addict rather than just a bad diabetic. and i'm not sure which is worse. the judgemental stares from whole foody types, telling me i should buy organic, vegan, fruit fly ice cream or... my diabetic cashier who most likely understands rather than judges, but by virtue of her diabetes, makes me weary? i've decided to stick with 'my people' and my diabetic cashier.

so anyways, today i did my routine dance with my diabetic cashier. we acted excited to see each other. we traded diabetic humor. we made elaborate plans for hanging out, both knowing it'd never pan out. the funny thing is, we canceled previously made, sensational plans and swapped with new plans for our grand diabetic pow-wow. it'll most likely never happen, just like we both never made it to the walk for diabetes. we decided it'd be better not to act as the token diabetics for our marching families, they could walk on their own. after all, that's what we do everyday anyways. sure enough, we appreciate our families' efforts, we just don't want to participate in anything remotely diabetic cultish- like diabetes camp, for example, now that was scary. but that's a story for a different post. nor do we want to fill ourselves with false hope. lets face it, i hope there's a cure coming, but i won't fool myself.

rather, i'll resort to humor. and here's where the insulin pump blackberry phone comes into play. my diabetic cashier and i decided, the solution to both grocery lists, blood sugar meters and insulin pumps is an all-in-one insulin pump-blood sugar meter- black-berry phone. it'd be fantastic! think of all the jokes:

-"if i don't answer my phone, it could be fatal - literally"
-"this call is life and death"
-"my phone's connected... and not just to a network"
-"can i borrow your phone? not unless you want to take me with it!"

and think of all the pluses,

- i'd never lose my cell or my grocery list again, because it'd be attached to me at my hip - literally!
-and talk about multitasking... imagine it... my pump would be blue-tooth capable. i wonder if i could voice command insulin doses?

and i wonder, if my pump was a blackberry... would it be against the GRE rules? what if i put it on silent?

Recall on Insulin Syringes

http://www.nytimes.com/2008/11/06/health/06brfs-INSULINSYRIN_BRF.html?partner=permalink&exprod=permalink

Hope

Mr. President

I've never been more proud to be alive here, in this time, apart of history - having my vote count.

Mr. President, I am at your service, I will do whatever to make this country keep going in the direction it's going.

commentary on the globe article

I'd just like to quote someone's commentary on the Globe article and then my response posted to that commentary:

"Sara - Something else to consider: What if you didn't need a pump, but did need to bring drinks in with you to prevent hypoglycemia? Without the insulin pump you would have scant evidence of your condition and would be hard pressed to convince the proctor to allow your beverages. In such a scenario, would you not have informed the testing center ahead of time, to avoid the high likelyhood of being turned away? I would think so. So why would adding the pump to the equation make it any different?

Either...

(a) you didn't know the rules about food and drinks during the test,

(b) you did know the rules but thought the pump would carry weight with the proctor,

(c) you wanted to make a point. "

My response:

"In response to the imagining a scenario without a pump:
Imagine a scenario where you didn’t posses voice and therefore, lacked the means to express your experience as a human.

This is the point. If you don’t hear disabled americans, it’s not because they aren’t there- it’s because they are trying to fit in a world not designed for them. See that’s the thing, if we never changed our perception of normalcy and right, many more of us today would be appealing for accommodations, crying out and stating, certain rules are inherently unfair. Changing the rules is always an uphill process because people are ultimately afraid of change and also, altering definitions of the norm.

The thing is, many people everywhere are trying desperately to fit a circle into a square. We need to change the rules so as that disabled americans don’t have to keep knocking on normalcy’s door. Disabled Americans, along with all those who don’t meet the criteria of this defining line, are just as normal as anyone else. The only difference is, they haven’t been afforded a way in. The only path given to them is a set of unattainable standards that inherently puts them down while raising others up.

So we can sit here and say, they’d fit in if they followed the rules. But in the end, by rules you don’t mean rules for you, but rules only for us ‘other’ people. See the thing is, you don’t have books of ‘extra’ rules to follow because you’re ultimately a square rather than a circle or a rectangle or whatever ‘odd’ shape that’s outside the norm. but this isn’t a society of squares nor even a society of circles. It is a society of shapes rather than a particular shape. So we’d better make space for differences rather than accommodate them with extraordinary rules. In the end, the rule can’t be one of exceptional statuses. The rule must be acceptation over exceptionalization.

People are always afraid of change, of altering the game. There’s always a large out cry when someone speaks out about inequality. But the thing is, if no one knocked on the door of change, we’d still have two different sets of water fountains, different sets of schools for different types of people, etc. and the thing is, we’re essentially saying, because of Disabled Americans’ inherent difference, they must be relegated to a different set of rules, so as not to disturb all other Americans.

So many people are so afraid of change that they are willing to stick to the same old, beyond the point of dysfunction. A certain politician says, ‘it will take all of us to make this momentous change’. He is right. It will take all of us. And the wheel has to start spinning somehow before it can get rolling. "

Some Reviews

http://ducknetweb.blogspot.com/2008/11/rule-riles-diabetic-test-taker.html

http://www.emrupdate.com/blogs/ducknet/archive/2008/11/03/rule-riles-a-diabetic-test-taker.aspx

My Stance in relation to the Boston Globe Article

(I posted this on my Facebook earlier today and I wanted to copy it onto Sicko Politico, even though it has overlapping statements to the once i've already come out with)

In relation to the globe article, in my own right, i'd like to state: i never purposely meant to bypass rules. in addition, there is no rule against wearing a medical devise. secondly, i do not think i am an exception. in fact, i see myself among millions of other disabled americans who fight each day to fit in an abled man's world. i think accommodations on testing are inherently unequal, in that i must endure a lengthy appeal process in addition to the time it takes to study for the test. in addition to that, i already have the added stress of a chronic illness to care for- which is like caring for an infant or having a second, full-time job.

this article IS NOT ABOUT ME. it is about how it's inherently unfair that disabled americans are subjected to the type of scrutiny and microscopic judgment exhibited by accommodations statuses on standardized testing. it's a
"separate but equal status"... it cause psychological stress and dehumanizes disabled americans in that they are reduced to their disease or disability, etc. they are no longer student, but broken- something other than the norm. therefore, they are subjected to be placed apart from the norm. they have to sit in separate rooms and take testing under a different standard because able bodied americans wouldn't "trust" them otherwise.

again, i never meant for this article to focus on me as a person- yet an issue in concern to disability RIGHTS. yes, we have them. i wanted people to see the bigger picture in relation to the inherent flaws in standardized testing in general.

in the end, i won't back down from my stance solely because a couple closed minded individuals are afraid of change. they are afraid of the whistle blower. well people, i don't have a whistle, i have a horn. so watch out and listen closely, because i'll never stop making noise.

this is an insulin pump, just like the one i wear, only mine is purple.

i've named my pump Sam.

sickness has rituals. like naming an insulin pump. celebrating D-Day [diagnosis day] - mine is March 28th. last year marked 10 years. i ate cake.


This is how i insert my insulin pump, every other day. it doesn't hurt- usually- unless i hit a blood vessel or a nerve. it's almost like the lunar lander landing on mars, only i'm mars.

i don't name the insertion device. we're not friends like that.


this is my continuous glucose sensor. it wirelessly transmits blood sugar date to my pump. we have an off and on relationship, because she's such a pricey date. if i were to take her out every day, she'd cost me about $400 a month because insurance companies don't cover her yet. i haven't named her either because i'm not sure how long term our relationship is going to be yet. i'm starting to get the feeling she might be a gold digger.


this is the sensor in action. look, you even get a hologram across your belly, blood sugar reading and all. of course, i am joking about the hologram.







now finally, does any of all this look like an ipod? not really. it more looks like cyborg technology. i'm literally a hybrid, half woman, half gadget + insulin pump. i don't mind, it gives me edge. or at least, i'd like to think so.

anyways all you Sickos, i'm wiped. i need to go to bed or my other maladies my kick my butt tomorrow. and today has been one tiring day. and tomorrow is going to be so exciting, i have to have some sort of energy reserve.

so in closing, i'd like to say goodnight.

goodnight to all my dreamers who believe in a better world.

to those who don't give up, despite the most unlikely odds.

to those who suffer in silence and despair, my your dreams tonight take you away from every last ache.

may you wake tomorrow with a reservoir of hope, energy and determination to keep on waging this crazy battle called disability.

and when your very last hope leaves with the cold winter air, remember you are not alone. and you do count for something. you matter. so don't give up. don't despair.

stick to your dreams and you will truly fly.

A Song

A diabetic friend from diabetes camp just wrote to me via facebook, “you’re my hero.” and it’s not the personal recognition that makes my heart swell – it’s that I know she is happy because her voice is finally out there. And oh what a sweet relief it is to sing after so long.

Stuffed in a box of stiff rules

I just read the comments on the article about my experience at the GRE. First some clarifications.

THE FIRST THING I DID WAS NOTIFY THE PROCTOR OF MY MEDICAL DEVISE.

secondly, IT IS NOT ABOUT WHETHER I FOLLOWED THE RULES - IT IS ABOUT HOW THE RULES ARE UNFAIR TO DISABLED STUDENTS.

why should i have to appeal to anyone to WEAR A MEDICAL DEVISE REQUIRED FOR ME TO LIVE?

it isn't about whether i followed the rules, it's about whether the rules are fair to begin with.

i never thought this article would cause such hatred and misunderstanding. it's just example of how people don't understand the lives of disabled people everywhere.

everyone will eventually be disabled by something at some point in their lives, it's nothing to have a chip about, but it is something to understand.

in addition, this just evidences how people can't understand anything outside the norm. they can't conceptualize a society different and more accepting of difference. this is how segregation happened in our country. this is how people were excluded on the basis of their skin. do we forget already that once African Americans couldn't register to vote because they didn't pass the limitus test that defined citizenship. would you say then that they should have followed the rules? obeyed? should they have not sat at the counters of Woolworth in protest? all you law students claiming i should follow the rules don't understand the true purpose of law. law is about interpreting rules and creating new codes from those interpretations. law isn't set in stone. law is living like language. it ebbs and flows with the time. we aren't stuck in some unchanging stone age of backwardness where we can't conceptualize new ways of being. no, instead we are perfectly capable of creating new rules so as that more people have access to this society. but some people shake in their boots when they hear mention of the word change. well let the wind blow people, because it's coming.

so all you lovers of rules, recheck your priorities.

in addition, there were two other test takers in the room. neither of them heard my pump beep because it was muffled. one of the test takers had head phones on, so he didn't hear anything.

and why should i explain myself to these people? after all, THIS IS NOT ABOUT ME AS INDIVIDUAL. INSTEAD THIS IS ABOUT A SYSTEM THAT FAILS TO INCLUDE EVERYONE IN A FAIR, JUST, MANNER.

i'm not backing down just because the status quo is pouting that someone finally spoke up.