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!

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!)

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

Kids learn by example to meet the unexpected

(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!

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.

Update

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. 

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.

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.