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?

Opiate Crackdown... Again.

So the New York Times has written about the newest opiate prescription crackdown. This will come as no surprise, but a deep burden, to pain patients everywhere. Like life with the kind of pain that gets opiate attention is not already hard enough.


I know that my life is not indicative of all lives, and that my experience is not universal. But it is already hard enough, dammit. I already have to schedule, attend, and pay for doc visits I do not need (as opposed to the many I do need) in order to "check in" on my pain script. I have already mentioned several times that it is no longer cutting it, and we are going to have to find something better that still leaves some upward mobility in this area for the rest of my life.


That is part of what I mean when I say it is already more difficult than it should be. I have to plan to be in pain for the rest of my life. Imagine that, if it is not your life:  you can never, ever have a pain free day. Not once can you ever go to sleep thinking that tomorrow will be better. That maybe, one day, you will find a way to not actively suffer throughout your day.


Just think about that for a minute.


So, your pain is incurable, but "manageable" through drugs. Opiates. And at every turn, it feels like someone is trying to remove the one thing that makes your daily activities possible. That allows you to not spend your day curled up in a ball, in tears, on the bed you rarely leave now.


Also: no one believes you. No one truly has a hint of a clue as to what life is like in your chronic pain body. And they simply cannot fathom the amount of pain one human being can feel and still be here, still be trying to function, still be trying to make some thing of their life. And they cannot imagine that one may need an evil, addictive opiate to manage. They do not understand the difference between addiction and dependence. Hell, a lot of detox programs do not understand that difference.


So sure, they may catch some people abusing the system. And some doctors may, from what was in the article, find some other, maybe even more effective treatments for a few. But what this really means is that a lot of law abiding patients are going to be in a lot more pain in the name of... Hell, I am not even sure. It will not matter to those patients. It does not matter to me. I just want someone to have an idea of the hell that some people are going go through in the name of it.

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

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.

SmartAss Review: Pill Glide

Just recently I had to go pick up my prescriptions, and while I was waiting around, I saw this: Pill Glide. It was in my local CVS, available in strawberry and grape flavors. This company also produces FLAVORx Pediatric Flavoring – for making your kids’ prescription liquid medications more bearable. Pill Glide comes in a one ounce spray bottle, which advertises as being 200+ sprays (each use is two to four sprays).

This essentially functions as a flavored, sweetened pill lubricant. My theory is that you might also be distracted from the discomfort of swallowing a pill (if that does, indeed, bother you) by the terrible flavor or artificial sweetener. I have no trouble taking pills most of the time (if you do not count the simmering resentment that I must do so), but I thought this might prove of some value – to recommend to folks that do have trouble, or to have handy when I have some plague with sinus drainage.

The directions are fairly simple: “Coat with Pill Glide (2-4 sprays). Place tablet or capsule on tongue. Swallow immediately with water.”  This is not supposed to be a substitute for having a drink handy. A lot of us dry swallow when convenient, or when we either have to or go without our meds, I know. I also know that this is not a good thing, as most pills are designed to be taken with fluid. I do not know if this would help with that, but my guess would be that it would. However, if you were stuck with Pill Glide and no drink, I suspect that it would work.

Pill Glide ingredients include the following: purified water, glycerin, sorbitol, xanthan gum, neotame, natural and artificial flavors. Buffered with: sodium citrate and citric acid. Preserved with: potassium sorbate, sodium benzoate, and propylene glycol. Yes, this has caused my spell check to tremble with rage! It is a selling point that the product contains no sugar, no dyes and no drugs in and of itself.

I think that it tastes terrible, but I hate artificial flavors and sweeteners, so I can hardly be fair. Honestly, it does taste far better than some pills I have gotten stuck in my throat, or pills I had to cut and therefore tasted when taking. So you will not catching me just spraying this on my tongue for the taste of it, but if I have to cut pills up, or my throat is already sore, I may very well use Pill Glide to make up the difference.

Surprisingly, I did not feel the edges of the pill as I swallowed, which I usually do. So this throat lube may have actually made it a little easier to do. Now, this was a large ibuprofen, 800 mg. I figured that was the largest I had right now, and probably one of the more commonly used prescriptions and therefore a good landmark. And I could use it right then.

My youngest daughter, 11 years old, said that although she could still take the half pill she takes at night, it was not as bad. The next two days she asked to use it with her nightly half-pill – so I call that a thumbs up. Our 14 year old young lady said she would use it if she felt the need and she does not mind the taste. The D man said that “it tastes like strawberry Jolly Rancher,” but did not notice a difference in the actual act of pill swallowing (only very large pills bug him). Last, but not least (I think he thought he would get out of it!), my G man said that it was indeed slick, with a sickly artificial taste to it, saw no difference (and usually has no difficulty).

Considering the entire house – only one person liked the taste, but we all saw how Pill Glide could be handy if one was having difficulty swallowing pills. So our final verdict is useful, not very tasty, but still better tasting than the tastes it can cover up. So thumbs up for Pill Glide.


Pill Glide’s contact information:
FLAVORx, Inc, MD 21046
http://www.pillglide.com
http://www.facebook.com/pillglide
1.866.370.2337
support@pillglide.com

Pill Glide’s FAQ is here. I bought mine for $5.99 (I think) at CVS. I bought strawberry, but they also had grape. It is also available at Amazon, in a handful of other flavors (strawberry, orange, peach, and bubblegum). Oh, and their homepage has a “live chat” option if you have any questions, but I cannot vouch for that because I did not use it. It did pop up and beep at me, though, so I assume someone was available if I wanted to chat.

Blog note

Haha! I have broken the “Upcoming” curse. Previously, almost every time I have posted about what I have in the pipe for this blog, I end up not posting for a while. So I was nervous about doing so yesterday. And yes, I did get a car, and I am very happy about that.

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!

SmartAss Commentary: Niaspan Commercials

Niaspan

Oh, how I loathe these commercials for Niaspan. Have you seen these? Wow, these pieces of passive-aggressive, sly, guilt-ridden pabulum are just stunning.

Here is the “brother” version. There is at least one more, but I cannot find a link for it. It is not quite as bad, but still not good. Scratch that, there are three total, and they can be found on the Niaspan homepage here.

I find these commercials to be full of coddling, wheedling, coercive, bullshit. It is hard enough to manage a chronic illness/injury/disability – we really do not need to be badgered by our friends and family. I think the idea that these are “interventions” kind of trivializes the actual purpose of an intervention, you know – giving a loved one a chance to stop and think about what they are doing to themselves and the people around them. To let them know that they are loved and supported, and that this will still be true if they try to change their lives for the better. It is usually reserved for exceptionally destructive behavior.

Take the brother commercial – the speaking brother is chastising the audience brother about the fact that he is not taking Niaspan. Never mind the facts that the brother has made the diet and lifestyle changes that are necessary for his condition. Oh, no – he isn’t doing enough because he isn’t taking this pill! What if he is already taking niacin? Or what if he has a contra-indication, like liver trouble? The speaking brother apparently does not care. He has decided what is best, and damn anything else.

The daughter commercial does not specify what other changes the audience dad has made. But she is going out on an awfully long limb for something that “might” work.

The sister commercial is mind boggling. “I know one more pill… I get it, I do,” No she does not, or she would not follow that with, “I am not taking ‘no’ for an answer.” The gall on display is stunning. Of course she knows best, how it could be any other way is beyond her grasp.

These commercials are demeaning to health care customers. They play into the all-to-common assumption that we, as individual patients, are either too stupid or too lazy to consult with our doctors, do our own research, and make our own decisions.

If you do have a friend or loved on that is dealing with cholesterol issues, it is totally okay to offer your support. As with other health issues, save your advice for when you are asked for it. No, we do not want unsolicited advice – by definition. If we wanted it, we would seek it out and ask you.

While looking for links to the commercials themselves, I found some folks that despise this almost as much as I do at CommercialsIHate.

Niaspan on Wikipedia is here. (This entry is actually about Niacin. Niaspan is apparently prescription strength, time release Niacin.)