Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts

Monday, May 1, 2017

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?






Friday, June 7, 2013

If Self Improvement is Masterbation...

I have not written much about me personally lately. I shy away from that sort of thing when I am stressed. So here is what is going on with me and mine for the folks that are interested. All of this is happening with tons of help from the family, particularly the Menfolk. I would still be splashing in a miasma of good intent, stalled efforts, and drama without their support.

A dark cat sleeps on the mousing arm of PatientC.
Umbra does not care if this post gets finished.

So if I get through today the same, this will be my first week at under 12 cloves a day. Or 12 cigarettes or under, but I hope for the former. While the eCigs are a wonder and I am using them frequently, I do think I am cutting down on my overall nicotine intake. I do not know if I will keep moving on nicotine reduction once I have the cigs kicked. Nicotine itself is not a health concern for me right now, and I am not sure that it should be one. 

"Once I have the cigs kicked" - I was not sure I would ever seriously use those words, but I just did. Woot!

My avoidance is not so bad when I stay in contact with people that reciprocate my caring and love for them. So I am using my emergency med less. But I prefer to take it when people stress is building and neither practical methods (STFU, GTFO, etc...) nor internal coping mechanisms are cutting it. If you are familiar with autoimmune illnesses like lupus/SLE, you know that other people's bullshit can literally make us lupies physically ill by stressing us into Flare's Ville. I do not talk about that much because people can be awful, but fuck it: that is the state of things. 


For about a year, with lupus in full effect but we were still unaware that it was there: I was stressing myself into the ER or a hospital room about once a month with a combination of physical and emotional stress. I just cannot let people do that to me anymore - what if the next flare convinces my immune system that my kidneys have become enemies and should be destroyed? I had to kick the part of myself that comes from abuse and neglect and remind her that she and I do not take shit anymore.

I have cut back on my caffeine, especially Red Bull. Now, I still drink a lot of it, there was just plenty of room for improvement. That and more generally weight reduction will not be a focus until the smoking thing is done, before the end of the year I hope

We are starting the Medical Mystery business that is my life back up again. Hopefully we can get some answers on the stuff that is not under the umbrella of lupus/SLE or fibro.

We are going to do more meditation at home and plan on going to more open sittings and the stuff we can afford to do with the local Buddhist group we met this spring.

I am working on writing more and actually putting it out there. I am getting better at actually posting what I write when I write it. I am also making time to write whenever I have the bug instead of letting it wait 'til I get back to my desk.

So, what sort of self improvement are you engaged in now? Is it working? Thanks for stopping by, I appreciate it!

Tuesday, March 19, 2013

Have You Seen Me Lately?

Yes, I am trying to be back here more often. This is a quick note to let you I had a good time hanging out with Rodimus Prime and SayDatAgain on their show, The Black Guy Who Tips. We talked about me and disability, about being pervy and poly - it was one of the better conversations I have enjoyed lately.

You can, and should go see it here: Spreecast, iTunes. You are missing out if you do not!

I was really happy with how Rod and Karen interviewed, they have a good touch on the ebb and flow of a conversation - a lot people really struggle with that, but not these folks. They talked about the topics with curiosity, some study (wow, rare, thanks, hurrah!), and an overall respect that made me feel really comfortable for the hour we talked! I hope that they feel I respected their home turf and treated it well.

Again, I apologize for not being able to hang out after, I had to get some sleep (I had not before the show, Rod knows what I am talking about!). I listened later and it was all fun!

(I tested these links, but my cache may keep me from seeing some errors. Let me know if you have any issues!)

Friday, November 16, 2012

ProPatient: Carpal Tunnel Surgery

Monday I had open carpal tunnel surgery. I had a hard time finding personal resources on what to do, what to expect, and how to plan before and after. So here is my experience, along with whatever advice I have for other folks going through the same thing. Be warned, I am an asshole, so for folks finding this in a search, this material will reflect me.

Read more after the jump. This is a long one!

Thursday, November 15, 2012

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!

Saturday, February 25, 2012

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

Wednesday, June 22, 2011

MSNBC and NAFC: Ed Picks Up the MSNBC/Free Clinic Mantle

Connecting people with life saving health care should not be a political issue.

Ed Shultz made me very happy last night. Although he did not mention Keith Olbermann’s early involvement with MSNBC and FreeClinics.US, he did pick up the mantle last night. He announced a new fund raising drive for a free health clinic in New Orleans, organized by NAFC (the National Organization of Free Clinics). To be fair, Ed was actively involved while Olbermann was at the helm of the effort – I had simply feared it would be either forgotten, or deemed to inconveniently reference the ex-MSNBC host.

If you are not familiar with the work of National Association of Free Clinics, you should definitely check them out – if you can donate, have access to a venue, can volunteer or if you need services. They have added a new way to donate $10, just text HEALTH to 50555.

The announcement is a must watch, and the interview that follows both stresses the importance of the work of the National Association of Free Clinics and lets you know what you can do to help, or to get help. I was only a little surprised to hear talk about the suicides they prevented. Besides helping people with neurological and biochemical issues;  just getting someone the help they have lacked for a chronic condition, or putting them on the path to a diagnosis which can make a huge emotional and mental difference in a person’s life. Life is pretty bleak when you know something is wrong with you but you have nothing but your word to back that up. Things can spiral wildly, until the only power you may feel you have is to decide when and how to end it all.

NAFC does great work, and deserves support. People depend on their clinics. It is sometimes a literal life and death issue. Help them out if you can. Go to them for help if you need.

Thursday, June 2, 2011

Not a Junkie


Thank you to Blurbette and #TeamAfterParty for bringing this simmering topic back to a brain boil.

Days like today find me feeling like a junkie. At least, I think that other people may see it that way. See, the doctor that signs my pain prescription took a long vacation around the holiday, a vaction which happened to include the day my Rx needed to be filled. So, I was, of course, left waiting. I have only rarely experienced any sense of urgency from medical professionals regarding pain treatment.

After years of fighting and enduring, I did finally get my health pros to take my pain seriously. My GP/gateway provider was particularly hesitant. He did decide (eventually!) that my pain is indeed real, and I am not seeking to sell my pills on the street. Even so, my ability to live my day to day life with at least some freedom of pain is not, and has never been, a priority for anyone with a sheepskin.

The difference between opiate dependence and opiate addiction is not obvious to the casual observer. One of the reasons I hate being called an addict is that addiction is a whole different experience, and I do not want to appropriate that experience set as my own when my addictions are mild: caffeine and nicotine.

I am dependent. This means that I require opiates to modulate my pain (it is long past being negated through most anything) and get through even a vaguely normal day. I acquire them through completely legal means, and there has never been any solid inquiry regarding my integrity. By “no solid inquiry” I, of course, mean other than the default suspicion that accompanies using opiates in the first place!

I take a very strong opiate, and still I do not have pain free days.

People dependant on opiates go through withdraw just like addicts do. The difference between dependent and addicted is not a physical one, in my experience, but a moral one. Unless you are willing to break the law and either buy off the street, or doctor shop, or whatever – there is nothing you can do but wait for the duly appointed authority figure in the matter to get off their DAMN ASS and take care of business.

It is not as if I am the one that insists that I need opiates to control my pain. I tried, both through my own suggestion, the suggestions of friends and strangers, and my DEA worried docs’ suggestions just about every non-opiate pain killer out there. I have also, a very few times, drunk myself into a stupor as a last resort escape from consciousness, if not pain. My liver is still not happy about any of that. To be honest, if killing a chicken in the light of the full moon could relieve my pain, I would probably do it. Nothing works but opiates, and I had a truckload of Nancy Reagan to get out of my damn head before I could even begin to be okay with that.

Extreme, unrelenting pain is insane making. No, I am not taking a poke at folks that qualify as insane – I mean that extreme pain can cause symptoms similar to several diagnosable mental illnesses. Pain can lead to shortness of temper, irritability, paranoia, loss of cognitive function, loss of memory, compulsive behavior, self-harm (in my opinion, this is an attempt to set off the CNS’s pain gate function), loss of physical ability, and unpredictable bouts of extreme anger, frustration, guilt, morose, ennui, and pissed-off-ness. Yeah, ahh, those would be, you know, industry terms…

As I write this, I am coming up on missing my first dose. Within a day after that, if it goes that far, I will have extra super flu-like symptoms (lupus is kind of like having the flu all the time anyway), I will hate the whole damn world, and my vocabulary with mainly consist of the kind of language people use when they tell the Aristocrats joke. It is all I can do right now to try to accomplish all the things that will need to be done for a little while in case I need to retreat to my bed, curl up under a blanket I will then play Too Hot Too Cold with, and spit random curses at the world.

There are a lot of side effects I experience that I am not, and will probably not go into here or with much of anyone that does not need to know. And my experience with this may not the same as anyone else’s, let alone everyone else’s.

Oh, and every six months I have to go though a “Do you still really need these pills?” appointment. Look, if I was all better one of the first things I would do is call all the docs that have been humane, recognized my humanity and sing their praises; then call the other docs and describe, in loud detail, what anatomically impossible feats I would like them to perform for me.

***

As of today, the day I post this, everything is fine. If you were kind enough to have a thought about my well being… well, first, bless you heart! Caring about people on the internet! You are an exemplary human being, Gentle Reader. Second, I am okay. This article was written early, in order to make sure I had something to post even if my doc did not get back to me in time to take away my short term ticket to hell. My doc was still gone, but my old doc is in the same office, was in attendance, and she did come through. So I am okay, and no more likely to explode at anyone than I am on any other regular.

Monday, May 30, 2011

Avoidant

For all the writing I have completed about labels, you (Future You that has read them once I finally posted them) might think that I enjoy labels in general and enjoying collecting them to myself specifically. That would be entirely wrong. Labels are simply shortcuts to explaining aspects of a situation, place, or person. I do not like them at all, but I cannot avoid acknowledging their usefulness.

I want to write to you about another label.

I am avoidant.

What does this mean? It means a lot – it means I do not like you, Gentle Reader, not at first anyway. People (more specifically strangers) wig me in the way some people are wigged by spiders or airplanes or elevators or ladders. I do not trust you. Not yet. I might learn to trust, eventually. I do not trust you not to judge too quickly, too harshly, and without adequate data. I do not think you will be fair.

How did I get this way? Well, my therapist said that it was the way I was raised. Frankly, I was amazed that a steady diet of inequity could lead a child to expect inequity through the rest of her life. I also developed a more-than-healthy level of sarcasm, as you can see. I was also aware of my own actions and my own feelings – but even then, giving them a name made things somewhat easier.

Why was I talking to a therapist? Well, it was early in the lupus mystery. I knew something was wrong, but we had not reached a point where my doctors agreed with me. We had "ruled out" a number of possibilities, and had yet to find the right course to peruse. So I was subjected to a battery of tests along with interrogations every time I saw a lab coat. My therapist’s job was to find out if I was malingering, a hypochondriac, suffering from Munchausen’s or anything other than genuinely physically ill.

She, the therapist, bless her, found out that not only was I not lying about my symptoms, but that I have a condition that meant there were few things I could do that would be more painful to my own psyche than to seek out strangers which I would then have to share personal details of my life and body. That each time I went to see a stranger such as a doctor or lab technician, I was causing myself great distress.

I owe her a lot – my doctors took me a lot more seriously after they were informed of her determination. Parts of my own life made more sense to me. I finished my course of therapy with her, and am not currently treated for my avoidance. I get by, though – through one other personality trait (flaw?): there is nothing that I hate more than fear. So I push myself into situations that I fear in order to conquer that fear

This is part of why I share details of my life with you, Dear Reader. I do not know you therefore I am scared of you and expect you will treat me badly. More importantly, I have things to say and cannot abide my own fear… So here I am. 

Interaction with others is often a trial by fire event. Each interaction, each post, each place I visit, each person I meet is a triumph of sorts. One that often cost me peace of mind, sleep, and peace.

Note: being sick and/or in a lupus flare kind of kills (sedates? Mollifies? Subdues?) the “Fuck Fear” philosophy and I am far less likely to be social or post while in such a state.

Wednesday, April 6, 2011

Stating the Obvious on Medical Costs

In editing this piece, I realize that it is fairly hot and heavy handed. I simply cannot apologize for my vehemence, but now you know that it is there.

Many don’t take prescriptions because of the cost

I saw this on abbyjean's Tumblr.

Wow, LA Times, really?!? Gee, next they will find out that people break compliance with follow up or specialist visits due to money or circumstance. Holy fuck, do folks really have their heads buried quite that deeply up their own asses?

Yes, people want to follow up with their doctor’s orders, recommendations, prescriptions, suggestions, and referrals. This is why low income folks have such terrible compliance levels. Fucking hell. I can think of three big roadblocks right off the top of my head: no money, no time off from work or childcare, and no ride. We can dig deeper: some people are neglected and abused, at home and maybe at previous providers. Have you shamed a patient away because they were fat, slutty, or sloppy*? Did you do it with some snide comment in the hallway you thought they couldn’t hear?

We want to get better, just like everyone else does, dammit! There’s just a lot in the way that you cannot see, because you see a diagnosis waiting to be made, not a whole person. Can you just take one damn minute before you put your hand on the blasted door knob, and deliberately employ a gestalt point of view for just sixty bloody seconds? Are they seeing you on Medicare, Medicaid, or their own dimes? If the patient has transportation programs, sliding scales, pharmacy discounts, and/or drug manufacturer discounts available to them do they even know? Because it is just as bad as having no options if you do not know they exist.

Sure, maybe you and your staff just cannot handle trying to keep track of that on top of every thing else you have to manage. I get that, I really do. So help the economy by hiring someone to do it for you – all they would need is a high school degree, some empathy, and some tenacity. With the additional people you can help, maybe it will even cover an additional employee.

* Fat, slutty, or sloppy were just a few adjectives I have heard office or hospital staff use regarding patients. I offer no judgments to folks that are fat, appear to numerous sexual partners (people suck), or folks who have a hard time bringing themselves around to what their community considers acceptable appearance standards. Neither should their damn medical professionals!

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 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.

Friday, July 30, 2010

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.

Saturday, July 24, 2010

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."