SmartAss ProTips: Your Med Backstory

I want to have some resources here for you to use if you want or need them. While writing a piece on Go Bags, I realized that I had not talked to you about putting together a basic medical summary. This is the first thing you want in a hospital/medical BugOut/BugIn bag, or any travel bag for that matter.

Nissi (a black pitt) and Lucky (a tawny Chiwowow) keeping the neighborhood safe by sniffing a suspicious tree.

We will get into what Go/BugOut/BugIn Bags are, why you may need one, and a guideline of things to consider when making one. But before that, and Go Bag or not, you should have a MedStory!

MedStory is my own term for a unofficial medical history. Anything written my you will be considered unofficial - remember, patient reporting is considered the least reliable source of information around by docs, etc - but that was before "fake news." 

Even if you are not doing the whole Go Bag thing, you should do this. Even if you are healthy, you should do this. Keep a copy in your bag, in your car... You know your life best, so keep it where you know it can easily be found in an emergency. Since this will be too big to fit in the typical wallet, a note near your ID that indicates where your history is stored could save your life or the life of someone else if you are a organ donor.

I am going to give you what I think would be useful, and you can use or change it as you see fit for you and your family. We are going to cover information personal, medical, and medicinal. If you have a suggestion to add, please comment below and we will all benefit!

When you write your medical summary, imagine the conversations you normally have with medical professionals, only this time they need to know and you are unconscious with no family or friends present. There is a lot of information to think about here. You do not need to let yourself be overwhelmed by it. Take each suggestion one at a time. 

Ideally, you will have a summary for each family member. Even if you are around for your spouse, kid, or parent experiencing medical distress, this stuff is stuff you want to just hand off and not worry about - you will have enough worries.

Start with the basics: your name, address, phone numbers should be at the top. Another very important piece of information is your emergency contacts: their names, addresses, phone numbers. Who is your next of kin? Who is authorized to receive and act on your medical information? Do you have Advanced Directives (also called DNR orders). Do you have a medical power of attorney? You should have a copy of that in here, along with a notation of the location of the original, should it be necessary. Are you an organ/blood/marrow donor or on a registery?

While the rest of your medical information is covered below, next you should list your allergies, whether you think they would be an issue or not. Example: an egg allergy could really mess you up if you are given certain vaccines. So list them all is my advice! Make a note of each allergy & severity. Iodine makes me itchy, but penicillin will kill me.

You also need to mention any conditions, illnesses, or whatnot. Some people will list psychological diagnosis, and they can be important, but others are not willing to disclose them without establishing, personally, that it is pertinent and that they feel safe doing so. Sometimes an illness can be figured out by the meds you take, but do you really want people guessing at that moment?

You also want the names, addresses, and phone numbers of any health care practitioners you are currently seeing or have seen recently (last couple of years). If you have seen a specialist, you will always get asked why you saw them, so list that too (example: saw a pediatric gastroenterologist for stomach pain that resolved on its own or a physical therapist for SI joint dysfunction that improved with a completed course of PT). 

Now you need to detail what you are normally putting into your body. List any over the counter (OTC) or prescription medications you take, no matter how innocuous it may seem to you. If you take ibuprofen for occasional headaches, they say so. Please keep in mind that many prescription medications are used for more than one application, so list the reason you are taking it. Also list any herbal or homeopathic intake. 

I want to say if you are taking anything illegal, you should put it here because sometimes your docs really do need to know, but you have to make that call for yourself. 

So that is a good start. I will update this article as experiences or conversations make me wiser. If you have a tip, let us know below! I am considering making a Google form or something, what do you think?

E-cig/Vaping Slang, Part One

If you follow me on various Internet over-sharing sites (micro/blogging places), then you know I am actively switching over from smoking Djarum Special Cigarellos to e-Cigarettes and mods. It is working, and although I have not completely made the switch, I am already seeing benefits and continue to pursue a complete switch over. The vaping scene can get quite confusing to folks new to it, because the scene already has a large vocabulary of slang and code. I want to help with that. 

Why do this here, on a disability, politics, and pop culture site? Because I think that it is important. Because I am personally using various vaping devices, with my start in them being in an interest in better health and not dying of various smoking cancers and other ill effects. Because I think it is important. Because I think it is a scene that could greatly benefit me and other folks with disabilities. Because I think it is an especially good idea to switch particularly if you are of ill health or malfunctioning immune systems. Please understand that these points are also my own opinion and I am not a medical professional.

So here are some random eCig/Vaping words/phrases/ideas with their meanings. I plan to do some more later. This is in no particular order. Feel free to offer corrections, additions, and comments below!

eJuice - this is the center of the Vaping world: the liquid used to create the vapor inhaled by Vapers.

Frost/Ice/Cold - every eJuice labeled as being cold or cold in some way usually means that it contains mint (rare) or menthol (common) flavoring. This is just as important if you are looking to avoid it as if you want it!

Spinner - a spinner is a battery with voltage control input manipulated by a marked disk on the bottom of the battery. The marks are usually on the body, and you change the power by turning the ribbed (usual) disk to the desired mark on the body. While the marking methods can differ, this always means that voltage control is changed by that "spinning" disk.

Analog - a typical cigarette product.

Vape - to vape is to inhale the atomized vapor created by eCigs and modes. It is to eCigs as smoking is to analogs.

Vaper - an eCig user. Also: a label worn with pride and with a resistance to the status quo of nicotine delivery.

Vapor - the atomized mist created by eCigs and Mods.

Mod - a vaping device is more than a decorated battery. Sometimes the actual battery is a separate product, contained within the mod. Mods are products that have more finite control over your experience, may have digital displays, and can come in very utilitarian or highly stylized models. Mods can also refer to vaping set ups altered by DIY vapers. 

QuickHit: Beyond Lupus

I have no long, rambling entry today, but I do have something to share:

The Embody program: Beyond Lupus.

The Boyfriend heard mention of it on a television commercial (I think). You may also hear it referred to as Rethink Lupus. The website contains an initial screening for a clinical trial of a drug called Epratuzumab. Do not dare ask me how to pronounce it, I have no idea!

There is a ten minute or so screening questionnaire on the web site. I like this because we can determine if I should bother going to a participating facility. Lupus/SLE can make that difficult, especially during flares. They also tell you the closest joint you can use to participate. You do want to have things like a med list, date of onset, other illnesses and that sort of thing when you sit down to fill it out.

The trial is a year, and there is the potential for later entries. There may also be a two year extension where everyone gets the drug after the trial, which will be super great if it does what it is supposed to do (bind to a protein on mature, malignant B cells in the immune system and get them to quit making a mess of your life, as I understand it).

It is important, in general, for people to take part in clinical trials so that we can get good drugs into the market and to people that need it. That is not just glurge designed to get you to sign up, it is also true. You do need to be fully informed of risks and benefits, and I intend to be so informed before I sign on for this.

I do not know how the trial will go, if I will actually participate, if I can say anything about it to you here if I do, or anything much yet. But as a chance to get better, or at least help get a drug out there that can help somebody, I feel like I have to try. And it is exciting to be faced with the idea of changing this up and trying something that may make that real difference you and I need.

Evil Hand Issues!

Monday was the day. I went in for open carpal tunnel surgery. I was in a panic. Not about the surgery, that was pretty routine. The panic comes from the idea of not being able to use my dominant hand for weeks.

I read. I keep house, as I can. I write. I game. I sew. I bead/make jewelry. I fuck. Everything I do needs that hand.

I have never had a cast, so this is another reason this is going to be a nightmare. I am sure I will bang it into everything, and I hate the idea of not being able to use my dominant hand. Turns out, it is a small, soft wrap and not that bad at all. It does sometimes itch like fire inside, though. Arg!

I am now back at my desk and am piecing together an article about the whole surgery et al, since I only found a few good resources. I am recovering well, and hope to avoid the ever present threat of flare while I heal.

And I need to be spiffy for a friend's wedding this weekend!

Dear Bill Maher

Dear Bill Maher:


Fuck you.


Wait, perhaps I should explain. On your HBO series, Real Time with Bill Maher, episode 238, after your opening monologue, you conducted an interview with Dr. Drew Pinsky.


For the most part, it was the standard off-and-on funny middling self-help celebrity interview. I had some hope that this would be good stuff when Pinsky called "bullshit" right away on some of the standard thought processes regarding celebrities and addition. Even better, when you both touched on how street drugs seem to, regarding addition in general, have different, less fatal outcomes than prescription drug addition. This is not part of current common wisdom and needs more discussion and scrutiny. I thought it was useful that you two delved into why celebrity addiction deaths seem to follow a pattern regarding "downers." It was really poignant when you two mentioned that sleep is the one thing that no one, no matter what their wealth and status, can order up on demand (particularly once one has built up a resistance to  Benzodiazepines , etc...).


But you and Dr. Pinsky talked a bit about painkillers, and you went so far off the rails you crashed the train in to the station. You quoted a statistic stating that while USians are a small percent of the world population, we use 56 percent of the painkillers and asked "What is it about Americans that we cannot cope with pain?" 


Deep breath, here we go...


So just starting out you make a gross generalization (and I do mean gross) and make me wonder what the hell is wrong with you. You give that statistic without citation, and with a number of assumptions. Have you even thought about what may be contributing to that statistic? That perhaps, with our extended lifespans that people are living longer in bodies that become more and more prone to conditions that cause pain? That there are numerous conditions out there that can not be cured, used to be fatal, but now are at least partially manageable and that one of the things that needs to be managed is often pain?


What is really important here is that you are feeding a stereotype of Americans using painkillers that itself can be deadly. Chronic pain is a vicious thing that uncoils into every aspect of your life, poisoning it. It does not just harm, it kills. Chronic pain kills enjoyment. Chronic pain kills serenity. Chronic pain kills relationships. Chronic pain kills self esteem and self reliance. Chronic pain drives people to suicide.


Do you have any idea how many people I hear from that live their lives in more pain than necessary, not out of deprivation but because of the stigma of pain killers? It is all I can do to not stop right now and sob just at the thought of the needless pain that I personally know is out there this morning. I am now, right now, needlessly suffering because my current pain killer and dose is no longer effective, but I just do not want to wrestle with my health care network. I just do not have the mental and emotional stamina to face being treated like a criminal because I have the misfortune to have a body that hurts.


Mr. Maher, please quit feeding the stereotype. There is genuine suffering out there, in here, that should not exist. If nothing else, in this modern age, we ought to be able to alleviate suffering. Our willingness to do so is part of our measure as human beings. 


I will toast you, Mr. Maher, the next time I take my nearly criminalized, carefully measured and monitored, and now rapidly approaching useless pain killer dose. If you cannot speak of those in pain or chronic pain with some humanity, compassion, and education, then please do not speak of us at all.


Edit: spelling error, 2/26/12

SmartAss Politics, I Have Them: Fathood

As I was writing about my politics as one piece, I noticed that it grew pretty big very quickly. I am breaking it down into parts, which will hopefully be less irritating, and allow me to explore each piece a little more coherently. I started writing about the politics of fathood a while ago, in response to someone being Wrong on the Internet. The timing of that incident has long past, but my views are still the same. So, come, and share them with me!

Wall of Text version: I am a big liberal, you may want to get used to it. I hold the lofty belief that the world would be a better place if we could all be the people we want to be (without causing harm to another, or hindering their ability to do the same), as determined by our own ideals. I also believe that a representative government has a duty to make sure that we all have the opportunity – an equal opportunity – to do so. While I am talking about my beliefs, I want to include that government should maintain a social safety net for those neglected, ignored, and/or abused by that society.

I believe in the use of the word “fat” as a value-neutral term.That is easy for me to say because I am not considered fat. I have been fat - or at least reacted to in a manner that suggested the other person thought I was fat. I have considered myself fat (hello there, body image issues, how have you been?). I have never been called fat by anyone since I left my parents home. As an adult, I have weighted from 105 to 175 pounds at different points in my life. I am personally uncomfortable using the term fat because I do not believe that the use of it as a value-neutral term is wide-spread enough for me to assume that it is being heard in a value-neutral way. Do you find yourself asking WTF is this “value-neutral?!?”  I say this: fat is a descriptor, like brunette, tall, or tan; rather than a judgment indicating lazy, gluttonous, jolly, etc… And while that is what I mean when I say “fat” I shy away from using the term at all for fear it read as a judgment even though such is not my intent.

Here is an interesting article: New York Time: Body Mass Index Can Be Misleading.

I believe that the BMI can tell you that you are obese, and yet your cholesterol, blood pressure, and heart health may indeed be fine. I mean that you can be heavy and healthy at the same time. I know for a fact that your BMI can be “ideal” and you can be an internal mess – that is where I find myself lately. So my “The BMI does not indicate health” stance does go both ways. Any meaningful use of the BMI must take into consideration the origins and original purpose of it, along with its inherent flaws.

I know I am going to fuck up being a good ally on occasion. I hope it is a rare one. Not only is it the right thing to do, but this issue challenges a lot of people that I care about deeply.

Now, articles agitate folks every so often, and I do not want to get into that one way or the other but I am glad that the discussions happen. I lay clam to being fat accepting, but there are people you should be reading if you want to really get to know what that means.  The Fat Nutritionist is a good start.

First, Do No Harm is a place where people can go to talk about fat-phobia they are subject to from medical professionals. I have seen this in action. I have watched my husband’s knee and back concerns blown off by tying them to his weight (he had bulging disks, and a torn meniscus/missing cartilage in a knee).

Now, of course there are intersections between disability and size-acceptance, and s.e. smith talks about that really well here.I love s.e. smith, as you all will probably figure out sooner or later.


I am sure this topic will come up again in the future, but this looks like a good start.

Do you have a Health at Every Size or fat acceptance link or story? Share it below!

The Health Activist Writer's Month Challenge (HAWMC), Day 1

HAWMC Day 1:
Health Acrostic Write an acrostic for your condition or the word HEALTH.


Living
Under
Perpetually
Unsatisfying
Situations

Okay, yeah, that works - particularly the aspect of never being able to dependably make plans.

This writing challenge is held by the WEGO Health Portal, and I see it as a really good idea.

I am going to keep up on the HAWMC, as I think it is a great idea, and may help me to find some direction for my writing. I am, of course, getting into it late in the game. I will tackle the topics as I can to catch up. If that is not possible, or I get really sick or something, I will still do them as I can.