Tuesday, October 5, 2010

Wow, Folks!

Well, people, I want to thank you for getting the word out on my wheelchair etiquette piece. The response was amazing! (Also, a little scary, but I am avoidant, and we can talk about that some other time.) I am very gratified by the traffic, and by your comments, I do not know what to do or say other than to thank you.

So, thank you.

I have been alternately busy, sick, or both busy and sick lately. Okay, and a little bit of Halo: Reach in there too. Blame SLE/lupus, the Democratic party, my birthday (woot!), maybe Bungie, and definitely me. I have a bunch of stuff in the works for Patient C, but I have some juggling of priorities to do, too. Yes, a round of sighs all around. 

I promise I have some good stuff going, but some of it it is also tough -- recounting atrocious stories in order to get to the meat of various matters takes more courage than I can sometimes muster all at once.

Friday, September 10, 2010

Awkward Moments, 3

A close friend of mine and I went to an Obama campaign rally in Indianapolis. This was one of my first big events in my wheelchair and I was very nervous about it.

It was cold, and I was wearing a coat. Hoping to make things a little easier, I put the minimum amount of stuff I needed into my coat pockets. This was a terrible, bad, no good call!

We get to the event and park the car. By the time we are halfway across the state fairgrounds parking lot, I am thankful for the chair already.

We get to the entry lines, and we are shuffled over to the leftmost line, as they are handling those of us that cannot get through the regular security lines. When it gets to be my turn, I have about half my pockets emptied into my lap, and half left unfortunately to make people wait while I finish. My friend and the security staff are pretty gracious while I fumble through my stuff to put it on the scanner conveyer belt. One staffer asks me about my meditation beads and makes other conversation as I finish up. The staff has me lean up for a pat-down, and then everything is fine.

So, this one is more about me getting used to the chair than anything else. I recommend, if possible, that one of your first wheelchair outings not be at such a high security event!

Thursday, September 9, 2010

Tongue Day!

Hello! This is just a quick note to apologize for taking extra time to approve comments, and for not getting a post out today as planned. I had a meeting, and then had a brush biopsy done to a small spot on my tongue. So, apologies for the inordinate delay, and things should be smoothed out by tomorrow.

Thanks for checking in!

PS: Please do not worry, this biopsy was a "just in case" measure, and I am only default-level concerned about it. I will know results in 10-12 days or so.

Monday, September 6, 2010

Cat Gargoyle Redux

Wow, people, thank you for getting the word out about PatientC. I am very excited, and very thankful! I have one more SmartAss Guide to polish up, and will get to working on some more. I also have a terrible, no good, very bad day write up that is turning into a post on identity, and I think I will work on getting it ready for the next Disability Carnival!

So, for a little treat, here is Umbra, helping out with the blog again!

When my cat, Umbra, is not perched on my back or shoulders, she sometimes seeks comfort on the arm of the couch, which is not coincidentally where I rest my arm and trackball. *sigh* This arrangement always starts out okay, but through the course of an hour or so will move towards my hand, and eventually rest her chin on my wrist or the back of my hand. As you can probably guess, this makes mousing difficult and switching to the keyboard to type nearly impossible (without upsetting one or both of us!).

My grey cat, Umbra, on the arm of the couch, sharing space with my arm and my trackball!

Saturday, September 4, 2010

DC Cabs - No Rides for Service Animals

Two posts in one day! Wow! 

Anyway, first off -- animal guides are not my bailiwick. However, I saw this on Twitter (hat-tip to s.e. smith, of this ain't living, and is fantastic!) and since we had a lot of useful dialog about animal service yesterday, I thought I should post this here as well.

People with Service Animals Can't Catch a Cab in D.C.

The article includes information on a study done by the Equal Rights Center, which is both interesting and depressing, in my opinion. They also include a YouTube video in the article that shows people trying to hail cabs and being passed over in favor of people without companions. A direct link to the study is here.

Awkward Moment, 2

The other day I was in the hospital with some friends I was supporting, and since the day was long (what day in a hospital isn’t?), I spent it in my wheelchair.

I was at the corner of my friend’s bed, and pretty out of the way. A nurse came in to prep for a new patient in the room’s other bed, which is fine. She decided I was in her way, looks down at me, and says “I’m going to have to move you.” A nurse! I responded, “No, you are going to ask me to move and I will move.”

My friend saw it, even with all she was going through, and mentions it in the comments here.

Alright, I am occasionally known amongst my friends as having high expectations for other people… But I will be damned before I find it unreasonable to expect a medical professional in a hospital to know some damn wheelchair etiquette!

Would you tell an able-bodied person that you needed to move them? No. If you would not say it to a temporarily able-bodied person, then do not say it to a person in a wheelchair!

Edit: for grammar.

Friday, September 3, 2010

The SmartAss Guide to Wheelchair Etiquette


Alright, this is going to consist of one solid concept and then variations on what to do with that concept. With the amount of faux paux, ignorance, and just straight up bad behavior I have seen myself, I feel like this is necessary. I do not believe that I should have to add a sarcasm warning to something with the words "smart ass" in the title, but there you go.

If you find yourself sputtering “But, but…” or getting angry or defensive – well, you will have to deal with that. There are guides out there that are more politic, nice, and cater to the discomfort that the able-bodied or temporarily able-bodied feel in these situations. I do not give a damn about that. You have been warned!

Main concept: a person in a wheelchair is just that – a person in a chair. Person. Chair. That is it. The corollary to that is this: do not do ridiculous shit. If you remember nothing else, remember this, and it should guide you well.

Editorial note: I often just say "wheelchair" as that is the scope of my experience. As far as I know, all this also applies to the users of scooters and power chairs. If I am mistaken, please let me know in the comments and I will happily make appropriate changes.

Now let’s talk about how that plays out in real life.

Thursday, September 2, 2010

Watch This Space!

Heya! This is just an update post to let you know I have been back in town for a couple of days, and things are okay. I am still really fatigued, but I expected and planned for that, no worries there.

Here is a taste of the next several upcoming posts:

  • I Have Politics, Get to Know Them (Me),
  • The SmartAss Guide to Puking for Pros,
  • An Awkward Moments post, and
  • The SmartAss Guide to Wheelchair Etiquette (in which I am decidedly not a good cripple!).
And since you have been nice enough to come here and read a maintenance post, I will treat you to even more of my crip-brilliant ideas:

  • Thoughts on House, MD and responsible portrayal of opiate use,
  • Hospital Visits, and why people should damn-well go,
  • Advanced Directives,
  • More Awkward Moments,
  • Disability and Sexuality,
  • Caregiver Stress and ideas of what to do about it,
  • My story (yeah, this one may take a while),
  • Emergency Bag -- why you should have one, what should be in it, and
  • The Office Visit and the Social Contract (and why you should break it!)

So, there's a little peak into my brain and my notes. Thanks for stopping by, and watch this space!

Wednesday, August 25, 2010

A Few Days Away, Suggestions

Hello, thanks for stopping by!

I wanted to let you know that I am going out of town for a few days, to visit a friend that is out-of-state, in the hospital and is going to have surgery. She is a great gal, a terrific friend, and I have high hopes for this procedure. I will leave tomorrow, be back this weekend, and should have a new post up before the weekend is over.

I have a few posts half written, but I do not think I will get to them until I get back. My next piece may very well be on ER/hospital etiquette.

I have not taken a solo road trip since I have been sick, so this will be an adventure on a number of levels. I may write that up, as there are singular concerns for the disabled/chronically ill while traveling. 

So while I am gone, I ask you to take a moment, think about what you would like to see me address here, and post a comment about it!

Saturday, August 21, 2010

Medical Information Binder

Okay, we talked about your emergency wallet card, so I think now we will go to your medical binder: who needs it, and what should be in it. I keep a medical binder, and I know a handful of people that also have one, and it can make your life a lot easier. Now, I am not talking about the medical file that most people have at home, where you keep all your doctor information, your insurance stuff and your receipts.

Please keep in mind that I am not a medical professional. Sometimes I jokingly refer to myself as a “semi-professional patient.” This is more of a been-there-and-done-that road weary kind of advice. Okay? Okay.

(Here is my first attempt at a blog jump, here we go!)

Thursday, August 19, 2010

Cat Gargoyle

Here is me, writing for you, protected by my cat gargoyle, Umbra.

Umbra, a gray cat, sitting on my shoulders and neck as I type the last blog post.

Helping Kids Understand Differences

(via a great blog: FWD/Forward (feminists with disabilities), a really great resource for information and fellowship)

I really liked this article, I think it gave some great advice and I would like to add some of my thoughts to it.

  • Remember that the disabled person you or your child is curious about is out doing their thing: shopping, working, whatever. Keeping that in mind, I believe it is okay to say something like, "Hi! My child is curious about your cane/wheelchair/helper animal, and I don't know much about it, myself. Would you mind chatting with us about it for a moment?"
  • No one is obligated to educate you,  we are not required to act as representatives of X population on demand, so be graceful if your request is denied. We are not your "teachable moment."
  • It is also okay to say "I do not know a lot about that, so we can look it up together when we get home."
  • Teach your kids that helper animals are not pets, and should not be treated as such. 
  • Talk directly to the person, not their aid, unless they or the aid indicates otherwise. Sometimes folks will talk to the person pushing my chair about me rather than to me, and that is indescribably rude.
  • Do not use disabled people as an object lesson. Seriously. In a store, I heard an adult tell a child, "You will be in a wheelchair, too,  if you do not learn to look before crossing the street!" Do I need to say that this displays an incredible lack of decorum or social awareness?
Do you have anything else you would like to add, or ask? Feel free to do so in the comments.

I am working on a couple of other posts, and hope to have more up soon. Thanks for stopping by!

Thursday, August 12, 2010

Pain: Attitudes

**Likely to become the first part of a series of articles about multiple posts about pain, pain management, and whatever related issues stay in my head long enough to write about them. I thank you for your indulgence! On another note, this post is rather more stream-of-consciousness that I would like, but I decided non-linear writing was better than none at all. It may take a while before I really find a voice and style for me.**

Pain is a complicated issue. Depending on what you are dealing with, and your own personal tolerances, almost anything can cause pain. It cannot be objectively observed or measured. It is difficult to categorize, although we have tried: intensity, duration, origination, any sense of cause, and various descriptors (shooting, throbbing, stabbing, etc…). What I want to discuss here is attitudes about pain.

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Having discussed this with other people in person, frequent reading about pain issues (particularly involving health care professionals), and my own personal experience, I find one major impediment to the acceptance of a personal declaration of pain. In the US, acknowledging pain is a de facto admission of lack of personal fortitude.*

Pain is pain, and if you have it, you already know that. If you have chronic pain, then you know that there is nothing in your life that it does not touch: emotional health, relationships with others, concepts of self and the ability to function at all to varying degrees. External responses to pain can vary from case to case. If you are screaming in pain with part of your tibia sticking out of your leg, the people around you will have two goals: one is to seek help for you, and the second will be to get you to quiet down. This quieting is multifold; to keep you coherent and avoid shock, and to comfort the unease other people feel at you displaying your pain. If you have chronic, invisible pain, you will likely be dismissed altogether, and experience a very uncomfortable social atmosphere as people (both internally and maybe even externally) wonder if your pain is ‘legitimate.’ If you talk about pain, people often seem uneasy and hurry to change the subject.

USians seem to have a Puritanical view of admitting to feeling pain, or having the audacity to *gasp* complain about it. This admission is seen as a lack of fortitude, or of character. Let me unequivocally state that there is no moral failing in feeling pain, nor in seeking help to alleviate it. None. Nada. Zero. You do not have to take any flak/guff/grief from anyone, including health care professionals, about insisting that you are in pain and need help. With the exception of medical professionals, you should not ever have to prove to anyone that you are experiencing pain. The health care system is more likely to take your pain seriously if they can find an underlying cause. Otherwise, you may be out of luck until they do. Be insistent, and do not let others negate your analysis of your own body and situation. You do not have to justify the use of any pain aid; not OTC analgesics, not opiates, not woo. Whatever works for you works for you, and may you have luck in finding that quickly, with a minimum of backlash.

Chronic pain =/= less of a person.

I have been in chronic pain for over a decade, from various and numerous causes, and have seen these attitudes consistently. So consistently, in fact, that when I do not see them, I tend to ask if the person in question has themselves has experience with (or with someone else with) chronic, unrelenting pain. Only a very few have acquired any sort of understanding without such experience.

I cannot begin to measure how much pain and misery I put myself and by extension, my family, through due to my own unwillingness to acknowledge that I needed help. Then I had to spend months convincing my health network of the truth of this. I think that talking to docs and whatnot about pain will probably be another post.

*I know I am both generalizing and specifying in ways that may be problematic, and I am interested in knowing how this plays out in other areas.

Tuesday, August 10, 2010


I know things have been quiet here for about a week or so, and I want you to rest assured that I have not forgotten Patient C! Here are some things I am currently doing for the blog:

  • Scouring the web for resources on dis/ableism, feminism, ageism, homophobia, transphobia, and other social justice interests, with a focus on intersection, 
  • Coming up with a good method of archiving this blog, so in case of server disaster all is not lost,
  • Working on a post about pain -- I think it may end up as several posts on things like the pain scale, the USian attitudes about pain and pain management, etc... and
  • Making a list of what needs to be in a medical information binder.
I have another handful of ideas that are not developed enough (yet) to list.

Thank you for stopping by! Please keep doing so, or look for me to announce the next update via Facebook, Twitter, and GoogleBuzz. 

Friday, July 30, 2010

Disability Carnival #68 and Evidence

Looks like it is time for this month's Disability Carnival, where a number of disability bloggers write about a common theme, and we all get to enjoy the results! This month's theme is evidence, and you can find it here.

I may try to write something for the next one, if I have the spoons and the confidence. I do not know if there are any pre-requisites for doing so, I will find out.

Deeply Problematic is a blog I have been following for at least a few weeks, and spent some time going through the archives until I ran out of spoons.

I find this theme very interesting, because the first thing that comes to mind, for me, is that a lot of people seem to want evidence of my disability. Since lupus is almost invisible (except the damn mask -- but that only means something to people in-the-know, as mine is pretty mild), I am often asked exactly why I use a cane or a wheelchair, or why I am sick or fatigued so often.

I suppose I could show someone my handicap parking tag, or my receipt for it, or my blood test results, but I will be damned if I will do that. Medical professionals can look it up themselves, and the general public can kiss my ass if they think I am lying.

You may think that only assholes does this sort of thing, but even well-meaning, usually polite people will ask about my cane or my chair, and react as if I am the one being rude by saying "It is a long story," and leaving it at that. At a recent convention, I had to say this three times to one person, and eventually had to end it with a polite version of "No, I do not want to talk about it with you." What the hell?

I only let people I really trust see me at home anymore. I think watching me get around just fine at home and need an aid out and about just confuses people more. At home, the furniture is situated so that there is never more than 2-3 steps where no support from the furniture is available, and I know how to fall if I do fall (which I am unwilling to risk in public). Also, I can choose when to stand or sit or lay down. Outside of my home, I do not necessarily even know if seating is available.

Oddly enough, my cane gets more comments than my chair does. I don't mind the folks that think it is neat, because, well, it is. It is a really nice clear Lucite piece. I bought it because it was about the same price as other canes, and my hope was, since it was transparent, that people would not even see it most of the time. That kind of backfired. People notice it a lot! I do not mind the folks that like it, I mind the folks that actually ask me if I need it, or just carry it to be cool. Yes, it does really happen. 

Parking lots drive me nuts, because I feel like I should use my cane, even on a good day or a short trip, so people do not resent me when I get out of the car looking "healthy." Apparently there is some stereotype regarding how I should appear, and I do not fit it. Yeah, I know, "but you don't look sick!"

I went through that phase where I wished I had a missing limb, or a very visible lump, just so people did not have to ask. Eventually I grew out of that to where I am now, which is being belligerent about them believing that they need to know or have a right to ask. I do not know if there is a phase that comes after this one.

In My Inbox: Ball Memorial Hospital

Indiana Equality mailed this out this morning:

A transgender woman and her partner and child are alleged to have been inhumanely treated, dehumanized and disrespected while making a visit to the emergency center of Ball Memorial Hospital in Muncie.

On July 18, 2010 the transgender citizen was coughing up a large volume of blood and was taken to the hospital by her life partner.  Despite the fact that the intake personnel were shown the individual's Indiana state identification which had her female marker in clear print, she was entered into the hospital's system as a male.

The staff allegedly ridiculed the transgender person, loudly referring to her as "IT". Her life partner was apparently asked by individual staff members, with raised voices, if she was a "He-She".  The patient also claims that she was quizzed about her length of time as a "Transvestite" when she clearly identified herself verbally and through official documents as a Transgender Female.

"It appears that a grave injustice may have been perpetrated against a transgender citizen of Indiana, as well as to her life partner," stated Vivian Benge, President of the Indiana Transgender Rights Advocacy Alliance.
Ms. Benge continued "This situation is particularly discomfiting as Ball Memorial is the hospital where Ball State University students go for emergency treatment.  There are a number of transgender BSU students, as well as other minority students, and they should not have to fear humiliation and refusal of medical care in the emergency room."

The transgender woman is suspected to have a lung condition that may be the cause of mass bleeding and oral expulsion of blood.  Yet, according to the individual, Ball Memorial Hospital refused to provide treatment, with the accompanying statement to the effect of "we do not know how to treat someone like her".  This happened after a long wait to be seen by a physician.
As leaders and advocates for the protection of transgender civil rights, Indiana Transgender Rights Advocacy Alliance and Indiana Equality urge Ball Memorial Hospital to conduct a thorough investigation of these allegations.

"If the events are proven to be true, we call upon Ball Memorial Hospital to take appropriate actions with the hospital employees involved and to institute policies, procedures and staff training that will ensure that such discriminatory actions are not again perpetrated, " stated Jon Keep, President of Indiana Equality.

Click here for a copy of the letter by Indiana Transgender Rights Advocacy Alliance and Indiana Equality to Ball Memorial Hospital.

The Indiana Transgender Rights Advocacy Alliance (INTRAA) is a statewide advocacy organization working to create a society that values and protects freedom of gender expression and the right to gender self-determination for all. For more information about INTRAA, please visit the organization's website at www.intraa.org.

Organized in 2003, Indiana Equality's mission is to end sexual orientation and gender identity discrimination in Indiana.  For more information about Indiana Equality, please visit the organization's website at www.indianaequality.org or call (888) 567-0750.

Thursday, July 29, 2010

National Association of Free Clinics

I found out about the National Association of Free Clinics via MSNBC's Countdown and have stayed updated via the show and the NAFC's web page. The upcoming free clinics are listed below:

August 4th, 2010 -- Washington D.C. -- one day clinic
August 31st - September 1st -- New Orleans, LA -- two day clinic

Please see the NAFC's web page to either donate, volunteer, or set up an appointment to be seen at these clinics.

Wallet Card

Let's talk about something practical and useful. I believe that everyone, especially the chronically ill, should carry a wallet card. This card should have a condensed version of all your current medical data.  Sometimes you can pick up blank ones at doctor's offices, and some pharmacies offer them, but you can always make your own using a blank business card, or a piece of paper folded up to wallet size.

Off the top of my head, here are some of the things you should have on your card. If you have additions or changes to suggest, please leave them in the comments! Note: I did not include insurance information as I keep mine between my ID and my insurance card.
  • Name,
  • Address,
  • Phone Number,
  • Emergency contact name and numbers,
  • Current doctors' names and phone numbers (include specialists you currently see),
  • Allergies,
  • Medications you take and dosages -- both Rx and OTC,  
  • Equipment you use and implants you have, 
  • Any tools you may need to communicate, and
  • Conditions -- both diagnosed and suspected.
Take a moment to think of anything else a medical professional may need to know if you are in their care and unable to answer questions.  Whether you are in "good health" or chronically ill, you could end up in a situation where a simple effort like this could save your life.

Again, you can make your own if you want, ask at your doctors' offices or pharmacy, or you can look online. I found a service that offers both free cards and ones you can buy here. This site has you fill out the information and puts it in a card you can print out.

Additional solid advice on emergency identification can be found here. I generated over five million search results on Google using "medical emergency card."

Having a card like this is not only handy in emergencies, but also useful when you are filling out the dreaded new patient forms at an unfamiliar doctor's office. It will not keep you from needing to go over the information at, say, an emergency room visit, as they will sometimes discuss it with you anyway to see how you are doing cognitively.

Monday, July 26, 2010

Awkward Moments, 1

I have decided to occasionally get very personal and post stories of various awkwardness that I have experienced that are (at least tangentially) related to my disability.

Recently three of us went out to an after-hours party at a convention. The convention was held in a hotel, and most of it was fairly accessible. The rooms in which the party was held was less so. For example -- we had to pull the wheelchair outside because of the lip between the room and the outside concrete patio.

So, enough with the details. At one point, a older gentleman with a kind of a creepy vibe stood next to me and patted me on the shoulder. As he did so, he repeatedly said something about his mom using a wheelchair due to polio. I was very uncomfortable. I am not a touchy-feely person, and I do not think that my use of a wheelchair is an open invitation for people to lay hands on me. So when he turned away for a moment, I backed the chair up against the wall so it would be very difficult to reach my shoulder. I could not go get someone in charge to have a talk with him because of the patio/door lip. He wandered off shortly after, and my husband had a talk with the gentleman once I told him what happened.

Queer Crips

Get to know a queer crip

Via a tweet by sesmithwrites retweeting mediadisdat. Sorry, I could not find a way to get a url for an individual tweet (I have seen it done and I will figure it out!).

The intersection of LGBTQIA (did I get that right -- it keeps changing to be more inclusive, but I fear I will botch it) and disability hits so very close to home, and it makes me feel good to see folks writing about it.

Often, it seems that while a marginalized group seeks equal rights and access, sometimes other marginalized groups within that group get set aside. Keep in mind, I speak simply of my experience and do not mean to paint all such groups with the same brush.

Note: while I would not call someone either queer or crip, I support a person's choice to self-identify that way.


It has just been brought to my attention that some web browser ad-blocking software will block my "Search This Blog" and Google News feed. I am not quite sure what to do to remedy that, but I extend my apologies.

Advice on this issue would be appreciated.


Amazing success fueled by act of discrimination

(Thanks to D for sending me this link.)

I read this story on CNN today, and thought it would be good to share it. I was, of course, appalled by the people that would not help Talbot right after his accident -- and then appalled by some of the treatment he received once he started navigating his world in a wheelchair.

The a number of the comments underneath the story were even more appalling. Why on earth do people with visible disabilities make others so vitriolic? I am always torn on the answer. Is it because we remind them of their own frailty? Is it due to the perception that access is a zero-sum game, and if society makes so-called "special accommodations" then others are somehow being left out?

Disabilities debate rages 20 years later

Comments here confused me too. Why must someone have a visible disability to use a handicapped parking spot? I was very hesitant to get my parking tag because I do not use my wheelchair or cane every day, but I am challenged by fatigue and pain every single day. A long walk through a parking lot can very well mean the difference between being able to go out at all or stay home. My tag is between me and the BMV, and my qualifications for that tag are between me and my doctor. I keep the receipt for my tag in my wallet in case I ever have to prove to some authority figure that the tag is actually mine.

I think the ADA needs significant improvement -- it was a hell of a good start.

Sunday, July 25, 2010

Links and Advice

Here is the inevitable post where I ask for good links to visit. I will be going through the ones I have this week, and will post what I have that will be a good resource here. However, I do not lay claim to knowing the whole internet, and would be grateful for some suggestions for the blogroll.

Asking about this reminded me that I am a big ol' newbie at this medical/disability/able-ism blog thing, so if you have any pearls of wisdom, I would welcome them. Anything you have found invaluable, or wish you knew when you were starting out, or go-to ideas. Policy ideas you use/have used for similar sites would be great, as I have the barest outline of such so far.

Saturday, July 24, 2010

Great Link!

Second Shift for the Sick is a blog post I read tonight, and just wanted to jump up and down yelling, "This! This! THIS!" You know, without all the actual jumping or yelling.

The post is a great description of just how tiring it is to be chronically ill. How tough it is just to get up and be on some days.

I am so tired of worrying if I am making other people uncomfortable just because I am sick. Some days I understand that I remind other people of their frailty, their mortality. Other days I just want to tell them to eat it.

I will write more tomorrow. I think I am starting to get a feel for this blog.

Reading Doctor's Notes

What the Doctors Is Really Thinking

I read this article with a lot of interest. The OpenNotes project is a great idea, and I hope to see it implemented globally.The piece is well written, with attention paid to both the benefits and downsides.

I know that when I read my records, I usually feel both edified and intimidated. I spend a lot of time looking up acronyms and how tests results are interpreted. The time and effort that it takes to understand those notes, however, also increases what I get out of subsequent visits: I am better able to articulate my questions and better able to understand the answers.

I see a lot of benefits here. Often, it seems that a lot of information can be tossed about during an office visit, and even though I take notes and ask questions, it is still fairly easy to miss something important. Also, if you were given a prescription months ago, and are just now trying to remember if it is okay to enjoy a glass of wine you can easily check. If your doctor told you to come see her again in six months, you can confirm when you should next schedule. This also eliminates a lot of hassle for everyone when you need a copy of your records -- you can decide exactly what you need and print it out.

Regarding the trouble of the way doctors take notes, I think the best solution would be to have a database of terminology and whatnot, and if a doctor writes "SOB" in his notes, the system itself could automatically hotlink it to another page, or a pop-up window that indicates that this acronym usually mean "shortness of breath."


I have thought long and hard about what it is, exactly, that I want to do with Patient C.
  • I want to give solid advice for navigating the medical world, to lend a hand to folks that are going through what I went through for a few years, and still deal with on occasion.
  • I want to help spread news and information about disability, both as an informational service and to help negate that lonely feeling that often accompanies chronic illness and disability.
  • I also want to give news and commentary on the intersection of health with class, race, gender and other social justice issues.
  • Occasionally, I may post something random (interesting, cute, infuriating, etc...) that I ran into and really want to discuss -- you have been warned!
Sometimes, things may get really personal. Health, and the issues surrounding it, can sometimes be intensely personal. I know that some folks may believe that I am giving too much focus to the medicalization of disability and of folks that are disabled, but I want to make that part of being disabled a little easier to navigate.

After a few false starts, I am ready to commit to updating this blog on at least a weekly basis.

Comment Policy

This is my first attempt at a comments policy, so if you have useful suggestions, please post them below.

While this may not need to be said, I will state it here: all decisions will be based on my perceptions and judgment.

Summary/TL;DR: Do not be an asshole.

  • Comments are moderated: at this time, all comments are moderated. I am new to writing a blog like this, with a focus on advice and social justice, so this is subject to change later. I will do my best to moderate comment queues as quickly as possible, depending on spoons.
  • Be polite: the world is rough and tumble enough as it is. This is meant to be a place for polite discourse. Feel free to question a person's ideas, but avoid personal attacks.
  • Intolerance: Isms will not be tolerated. This includes, but is not limited to the following: able-ism, class-ism, racism, size-ism, sexism. Trans-phobia and homophobia will be not be allowed. While I have had an interest in social justice since I was a teen, I am relatively new to the language of the movement, and may occasionally make mistakes in both my post and in approving comments. It is okay to point out those mistakes, just know that I am doing my best and am always working to improve.
  • Trolling: No trolling. Yes, trolling will be defined by me.
So relax, speak your mind, share ideas and opinions -- all I ask is that we try to treat each other with some tolerance.

So, that seems to be a good start, although I expect to make additions, changes, and whatnot as time goes on.