Medicated For Your Protection
I Forgot Why I Cake Topamax
Table of Contents (hide)
Most of this article comes from three articles I wrote way back in late 2003 (yes, Crazymeds is that old) and early 2004. Originally it was tips to make the most of 15–30 minute appointments with doctors. After Bryan wrote his article about applying for disability I expanded the focus to include tax deductions for those of us with jobs and SSDI/SSI applications for those of us who couldn’t bag groceries no matter how much we wanted to. Just to make reading everything sequentially1 easier I’ve put the updated version in the middle of Bryan’s article.
One thing Bryan had in his original article about getting your records together when applying for disability:
Find a psychiatrist that keeps good records — including your diagnoses, medical history, daily activities and how they are impaired, side effects of medication.
Things have really changed in ten years. These days you’re lucky if you can find a shrink less than half an hour from where you live who is accepting new patients.
There’s no way you’ll be able to complete the forms required to the company’s / state’s / SSA’s specifications without having your medical records handy. Obviously you can request your records from your doctors, but by the time you get them (and pay through the nose for them in some cases), the deadline for sending the forms back will have elapsed and you’ll have to start all over again. Depending on the severity of your illness you don’t know how long you won’t be able to work, so start saving the information about your illness now. You need all the evidence you can get for any disability claim.
There is a very easy way (AKA lazy, AKA about the only way some of us are capable of handling) to prepare for something like this. It’s not the best way, but it’s better than not doing anything at all.
- Get a box. Something about one cubic foot (12 inches a side, or thereabouts).
- Every time you get a bill for a doctor’s visit involving the medical condition(s) that is now or may potentially prevent you from working, and only that condition(s), put it in the box.
- The same goes for every receipt that comes attached to your medications.
- And every other piece of paper you get with your name and your doctor’s name(s) on it.
- Write something on all sides and the top to identify it as containing the records regarding your disability and the date of the first bill, prescription, etc. Or at least the date you started throwing stuff in there.
- If and when you fill up that box, add “Box 1″ and the date you filled it up. Then start another box as above, which will be “Box 2″ when it fills up.
- If you want to be slightly organized you can (probably) use smaller boxes and do a new one each year.
The next step up the organization ladder involves buying office supplies. This is fraught with danger, as many people with bipolar disorder and other brain cooties tend to go way overboard when buying office supplies and/or organization tools. As always I recommend bringing someone with you, not only to keep you from getting frustrated when looking for what you need, but mainly to keep you from maxing out your credit card and coming home with so many ways of organizing your stuff you won’t be able to walk around where you live because of the stacks of disorganizers all over the place2. For those with agoraphobia, social anxiety, lack of local access to office supplies: you can find all of these online. I still recommend having someone with you when you make your purchase so you don’t max out your credit card/clean out your bank account.
What you actually need to buy are:
- one or two bankers’ boxes, depending on how they are sold or your preferred organization method
- the smallest package of letter-sized hanging folders
- the smallest package of letter-sized tabbed file folders
How you think about things and how much paper you’ll be getting will be the main factors in determining how to organize records in bankers’ boxes. Here are some examples:
- One bankers’ box which will hold all the hanging folders.
- Each hanging folder will hold your records for a year.
- Each tabbed folder will hold a type of record: one for disabling conditions, and one for all other medical conditions.
- Two bankers’ boxes, one for disabling conditions, one for all other medical conditions.
- Each hanging folder represents a period of time: a month, a quarter, a year, all depending on the amount of paper you’ll be getting.
- Each tabbed folder will hold a type of record: medications, doctor visits, receipts, whatever else you might have.
Whichever of the above methods you use, keep one empty bottle (or whatever the container is) of each medication you’ve taken for your disabling condition(s). When it comes time for your interview with the SSA, you can bring in your box(es) of records, along with your empty med containers. Visual aids can be wonderful things.
Pile of Pills
Vaccines Cause Immunity
Medicated For Your Protection
The Health Insurance Portability and Accountability Act, better known as HIPAA, and the far lesser-known Patient Safety and Quality Improvement Act, or PSQIA3 are, among other things, supposed to protect patient privacy. For some reasons drug companies are able to get their hands on prescription information for marketing purposes, yet it can be incredibly difficult for someone who is mentally interesting to get their own records. Things to remember when you fill out those HIPAA privacy forms:
- Put your name on the list of people authorized to see your information. While technically unnecessary, the lack of the patient’s name on the list of those your doctor’s office manager is authorized to disclose the records to has prevented people from getting their own records in a timely fashion.
- Make sure all your doctors have access to each other’s records. Your life will be much easier that way.
- Don’t forget your emergency medical contact.
- The Social Security Administration. Unless you landed on this page via a search engine for some reason that has nothing to do with applying for SSDI/SSI.
Since I wrote the first version of this article nine years ago a lot has changed. Back then the idea of keeping a journal of how your meds affected you, especially online, was a new concept to practically everyone who read it. If you’re not now keeping a record of how the meds make you feel, you’ve probably considered doing so. You don’t have to be keeping one online, but you do need to be keeping a record of the meds you take, if they work or not, and what the side effects are like. It doesn’t need to be fancy, and it doesn’t have to be daily. All you really need is:
- Drug name(s) and dosage(s)
- Event: starting or stopping a drug, changing the dosage, your symptoms improve or get worse, a new side effect happens, an existing side effect goes away/gets better/gets worse/comes back, etc.
You can keep the above information on a notepad, a blog, the backs of envelopes, tweets to your imaginary friends. How you record the information isn’t particularly relevant, just as long as you can show it to your doctor and, if required, print it out for the SSA.
As with medical records, the above diary is the minimum amount of information you’ll need for a disability claim.
Medicine Is The Best Medicine
Vaccines Cause Immunity
Mental Illness is NOT Contagious
Medicated For Your Protection
When it comes to side effects, the general attitude at Crazymeds is: stop being such a baby and take your freakin’ medicine. When keeping a record of your side effects for insurance purposes go wild with side effect paranoia and complain, complain, complain. Why? In addition to it being cathartic and somewhat therapeutic, the side effects of medications are sometimes taken into consideration as an aspect of being disabled. As much as I dislike gaming the system, the system is stacked against the mentally interesting4, and it’s socially OK to be prejudiced against us, so we need every advantage we can get. Frankly, you don’t know how long some side effects will last. I’ve been taking my current cocktail for about three years now, and I still sleep ten or eleven hours some nights, and I work5 on Crazymeds an average of three to four days a week for, at most, six hours a day. If you browse the what’s new page you can see how often I do significant updates. There’s no way in hell I’ll ever be able hold down a real job. And that’s just the meds, I still have the occasional problem with the conditions they treat. If whatever you have is bad enough to leave you in the position where you’re forced to consider disability because you’re not completely responding any of the treatments you’ve had so far, then expect to deal with side effects that range from annoying to unpleasant, that won’t go away, when you do find medication(s) that partially control your symptoms.
Of course there is. Several. The phrase you want to use when searching is: medication diary. Which one is best? Damned if I know. Is using an app better than writing it down on paper? Whichever you prefer to use is the better method. Your phone, a real computer, a notepad, a tape recorder, your personal YouTube channel, it doesn’t matter how you do it, just as long as it gets done. Of course you’ll need to transfer the information to the SSA’s forms, as detailed in the next part of this article, so try to keep that in mind.
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If you have any questions about SSDI/SSI or similar issues, there’s a part of the Crazymeds forum devoted to insurance, drug prices, applying for disability, etc. Medication Costs, Insurance, Disability & Assorted Issues - It Costs How Much? with the topic Q & A On The SSDI Approval Process.
Don’t worry about actually buying one. Windows shop and share the designs you’d like to buy or find worthy of ridicule. What else are you doing now? Working? Sure you are.
2 Fortunately I have a large outbuilding where I can store the extraneous file cabinet and similar items I have so they don't block the house's narrow halls. Along with the boxes full of records, etc. I meant to store in them.
3 While HIPAA has been around for ten years longer than PSQIA, I think the main reason it's far better known than PSQIA is HIPAA is a clumsy acronym - i.e. you can pronounce it like the way I keep misspelling it, "hippa" - whereas PSQIA is an initialism, in that doesn't spell anything remotely pronounceable. Unless you speak Salish. Then again, PSQIA is completely voluntary, so why the feds bothered to put it together in the first place and expect anything to happen…
4 And everyone else with an invisible disability.
5 If you can call it "work".
Applying For SSDI/SSI: Part 2 Getting Your Medical Records Together by Jerod Poore is copyright © 2003 - 2012
Author: Jerod Poore Date created: 17 September 2012 Last edited by: JerodPoore on: 2016–04–18
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Almost all of the material on this site is by Jerod Poore and is copyright © 2003, 2004, 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, and 2016 Jerod Poore. Except, of course, the PI sheets - those are the property of the drug companies who developed the drugs the sheets are about - and any documents that are written by other people which may be posted to this site will remain the property of the original authors. You cannot reproduce this page or any other material on this site outside of the boundaries of fair use copying without the express permission of the copyright holder. That’s usually me, so just ask first. That means if want to print out a few pages to take to your doctor, therapist, counselor, support group, non-understanding family members or something like that - then that’s OK to just do. Go for it! Please. As long as you include this copyright notice and something along the lines of following disclaimer, I’m usually cool with it.
All rights reserved. No warranty is expressed or implied in this information. Consult one or more doctors and/or pharmacists before taking, or changing how you take any neurological and/or psychiatric medication. Your mileage may vary. What happened to us won’t necessarily happen to you. If you still have questions about a medication or condition that were not answered on any of the pages you read, please ask them on Crazy Talk: the Crazymeds Forum.
The information on Crazymeds pertains to and is intended for adults. While some information about children and adolescents is occasionally presented (e.g. US FDA approvals), pediatric-specific data such as dosages, side effects, off-label applications, etc. are rarely included in the articles on drugs or discussed on the forum. If you are looking for information regarding meds for children you’ll have to go somewhere else. Plus we are big pottymouths and talk about S-E-X a lot.
Know your sources!
Nobody on this site is a doctor, a therapist, or a pharmacist. We don’t portray them either here or on TV. Only doctors can diagnose and treat an illness. While it’s not as bad as it used to be, some doctors still get pissed off by patients who know too much about medications, so tread lightly when and where appropriate. Diagnosing yourself from a website is like defending yourself in court, you suddenly have a fool for a doctor. Don’t be a cyberchondriac, thinking you have every disease you see a website about, or that you’ll get every side effect from every medication1. Self-prescribing is as dangerous as buying meds from fraudulent online pharmacies that promise you medications without prescriptions.
All information on this site has been obtained from the medications’ product information / summary of product characteristic (PI/SPC) sheets and/or medication guides - which is all you get from sites like WebMD, RxList,
NAMBLA NAMI, etc., the sources that are referenced throughout the site, our personal experience and the experiences family, friends, and what people have reported on various reputable sites all over teh intergoogles. As such the information presented here is not intended as a substitute for real medical advice from your real doctor, just a compliment to it. You should never, ever, replace what a real doctor tells you with something from a website on the Internet. The farthest you should ever take it is getting a second opinion from another real doctor. Educate yourself - always read the PI/SPC sheet or medication guide/patient information leaflet (PIL) that comes with your medications and never ever throw them away. OK, you can throw away duplicate copies, but keep at least one, as that’s your proof of purchase of having taken a med in case a doctor doubts your medical history. Plus they take up less space than a bottle, although keeping one inside of a pill bottle is even better.
Crazymeds is not responsible for the content of sites we provide links to. We like them, or they’re paid advertisements, or they’re something else we think you should read to help you make an informed decision about a particular med. Sometimes they’re more than one of those things. But what’s on those sites is their business, not ours.
Crazymeds is optimized for ridiculously large screens and browsers that don’t block ads. I use Firefox and Chrome, running under Windows 72. On a computer that sits on top of my desk. With a 23 inch monitor. Hey, at least you can make the text larger or smaller by clicking on the + or - buttons in the upper right hand corner. If you have Java enabled. Like 99% of the websites on the planet, Crazymeds is hosted on domain running an open source operating system with a variety of open source applications, including the software used to display what you’ve been reading. As such Crazymeds is not responsible for whatever weird shit your browser does or does not do when you read this site3.
Crazymeds now uses a secure server, but it is not so secure that you can discuss anything having to do with nuclear power facilities, air traffic control systems, aircraft navigation systems, weapons control systems, or any other system requiring failsafe operation whose failure could lead to injury, death or environmental damage. Just so you know. So if you’re mentally interesting and have a job that deals with that sort of thing, talk about said job elsewhere. Otherwise feel free to discuss your meds and brain cooties.
No neurologists, psychiatrists, therapists or pharmacists were harmed in the production of this website. Use only as directed. Void where prohibited. Contains nuts. Certain restrictions may apply. All data are subject to availability. Not available on all mobile devices, in the 12 Galaxies Guiltied to a Zegnatronic Rocket Society, or in all dimensions of reality. Hail Xenu!
‘Everything is true, nothing is permitted.’ - Jerod Poore
1 While there are plenty of books to help you with hypochondria, for some reason there’s not much in the way of websites. Then again, staying off of the Internet is a large part of curing/managing the disorder.
2 Remember kids, Microsloth operating systems are like TOS Star Trek movies with in that every other one sucks way, way more. With TOS Star Trek movies you don’t want to bother watching the odd-numbered ones. With Microsloth OS you don’t want to buy and install the even-numbered ones. Anyone who remembers ME and Vista knows what I mean.
3 Have I mentioned how open source operating systems for commercial applications is one of the dumbest ideas in the history of dumb ideas?* I don’t even need my big-ass rant any more. Heartbleed has made my case for me. And that’s just the one that got all the media attention. The very nature of an open source operating system makes security as much of an illusion as anonymity on teh Intergoogles. Before you flip out too much: the domain Crazymeds is hosted on uses a version of SSL that is not affected by the Heartbleed bug. That’s one of the many reasons why I pay a lot of money and keep this site on Lunarpages.
* Yes, I know I’m using open source browsers. I also test the site using the now-defunct IE and Safari browsers. Their popularity - and superiority - killed IE and Safari, so that’s why I rely on the open source browsers. It’s like brand vs. generic meds. Sometimes the generic is better than the brand.