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.