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I'm a glass-half-full type 1 diabetic/celiac with a C5 spinal cord injury and life-altering allergies. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010, a spinal cord injury resulting in a spinal cord fusion at the C5 level in 2012 (resulting in chronic pain and life-long physical restrictions) and bad ass allergies in 2013. I believe having a positive attitude is the only way to live with disease and injury. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Disease and injuries are expensive, so I live a frugal yet full life (I'm a fru"GAL"!) Please know I am NOT any sort of professional and am not giving professional advice. This is just my blog; my day-to-day story.

Saturday, January 12, 2013

Creating a Disease Binder- Staying Organized.

If you've read my blog in the past, you've probably heard me mention my disease binders and why I think they are a good idea to have. Today I'd like to show you how I put mine together, and encourage you to make one of your own.

It is so essential and beneficial to stay organized when dealing with a chronic illness, whether it is your own or your family member's. If you have more than one member of your family that has a chronic illness, I would keep separate binders for each person. It is also essential to have a binder in the event that something happens to you and someone needs to quickly step in to take care of you. A binder will provide someone with information on who your doctors are for each condition, contact info, latest medical tests and info, etc. It enables someone to step in and pick up where you left off.

Just so you know, I also have a binder for my pet. Yep, I do. So that if something were to happen to me, or if someone needed to watch her for a period of time, they have all of her food info and feeding schedule, her vet contact info as well as where the closest emergency vet location is, my contact information, her age and medical info, pill schedule, and general info on her schedule (like where she likes to sleep and that she cannot go up or down staircases) and behavior info (ex: she doesn't like small children or other dogs).

I've included a lot of information in this post, so go grab a coffee, a water, and a snack, because you're going to be here for a while.

I have one binder designated for type 1 diabetes and grave's disease, and one for celiac disease.

In general, these are the items you will need to put together a disease binder (all can be found at retailers like Walmart and Target or office supply stores):

-a binder (I started with a small one and eventually changed it to a large-ring one). I recommend using one with pockets in the front and back cover.
-tabbed dividers
-clear sheet protectors (to hold articles and small things like notes and business cards)
-3-ring paper hole punch (optional, but certainly helpful to have)

And of course, copies of all of medical information you've received, including medical records or reports, test results (I especially like to keep all of my A1c results so I can look back at them), business cards, notes you've taken, articles you've ripped out, recipes, brochures, insulin pump or CGM information--including a copy of your MOST CURRENT insulin pump settings. Also, mail order RX forms, extra written prescriptions, medical bracelet receipt, travel/fly letter from my doctor, which I get updated once a year and keep on hand, and a list of questions I have for that particular physician the next time I go in, etc.


Let's start with the diabetes and grave's disease binder. You can click on the pictures to make them bigger if the writing is too small for you to read.

You can decorate your cover any way you'd like, but at the very least I'd recommend labeling it.



In the front pocket, I keep small notes and articles. In the front of the binder, I've saved a few articles that I have liked to share with others who want to know more about type 1 diabetes; articles that I think are well-written. I made copies for family members and friends after diagnosis to answer a lot of the questions they had about type 1 diabetes.

Next, I have tabbed dividers for each of the diabetes providers I see or have seen.




In these sections, I have my original diagnosis paperwork, all hospital discharge paperwork, instructions from doctors and CDEs, and any literature that facility has given me that I've found useful (like instructions on how to adjust your basal rates). I also keep copies of all lab work. In a clear sheet protector, I keep small things, like all of the business cards for the providers I see in that health system. I also keep food & activity logs, information from diabetes education classes, and any faxes with the verification page attached. Also keep in here any paperwork that you need to have filled out the next time you go in to that provider, or any paperwork you are supposed to bring back to them. Keeping it here ensures it won't get lost.

A key note I'd like to make is to only keep information that you deem could be useful to you in the future. I don't promote keeping every single piece of paper you are ever given.

Next I have tabs for my sick day plan, my Omnipod insulin pump (including approval letter from insurance and any important correspondence from the pump company, notes from phone calls talking to the company, a copy of my pump therapy orders and instructions for use), and the JDRF's Type 1 Toolkit.




You may want to add additional separate sections for things like if you are in/have been in any medical studies or if you have a "membership" with a glucose meter/test strip company, like Accu-chek or Freestyle. In those tabs I would keep a copy of my "membership" card, so when I inevitably decide to use it I have the information needed to give the pharmacy. And a section on food or carb counting, if it's useful information you would reference.

At the end of the binder is my grave's disease tab. In that section I put diagnosis paperwork, lab results, biopsy results, and information about grave's disease and treatment options, including a brochure on the type of treatment I selected.


I have a separate binder specifically for the Mayo Clinic, since I like to keep all of their stuff together. Their doctors work collaboratively and when I go for an appointment, I bring my binder and can reference things from other Mayo doctors.

Separate from the binders, for small ailments, like regular doctor appointments and such, I just keep a general medical file in the file cabinet. I include in there general diagnosis information, test results, etc.

I also keep separate files for insurance information. I have one hanging file for each year, so I just created my 2013 insurance file. In it, I keep a copy of my insurance renewal verification (should it get lost and I not get added to the system, I have a record that I did, in fact, enroll) and an extra copy of my insurance card (they usually send me two). I also keep copies of all Explanation of Benefits (EOBs), any insurance prior authorization or approval letters (like for getting additional test strips), copies of appeal denials and approvals, basically anything that you don't have an electronic copy of, and also notes I've taken from each call when calling the insurance. On several times, I've used those notes when someone said they would complete something for me, and it never got done, and I call back and they have no record of me having ever spoken to someone. Or maybe that's never happened to you. But I've had it happen several times so I keep detailed notes including the tele# called, the date, time, representative's name, what my questions were, what the answers were, and what follow up that person has agreed to do and by what deadline. I have worked for insurance companies since my early 20's and I HIGHLY recommend doing this. You could certainly keep these items in your binder, as well; just create a separate Insurance tab. It just depends on how you like to organize your topics. I like all my insurance stuff together versus separated out by disease.

I also keep in my 2013 insurance hanging file copies of all FSA dollars spent (each time you use your FSA it should generate a document to be sent to you).

I don't keep these files forever; usually about 2 years, and then they are recycled.

WHEW....

Next up, the celiac binder.

I threw out my old cover page I made for the front of the binder, because I have plans on spiffy-ing it up with some pictures of food and desserts.

So, when you open it:


In the front pockets, I keep brochures, notes, phone numbers of celiac clinics, and business cards.

Under the first tab, I keep articles about celiac disease that I like to share with others, to help them gain a better understanding of this disease. I picked out my favorite articles that were the most well written. I have also used these to make copies and give to people I meet that were recently diagnosed with celiac disease. I've been known to get someone's address that I meet in the grocery store that was recently diagnosed and send them a celiac care package, including copies of these articles for them to read and to share with their friends and family.


Like the diabetes/grave's disease binder, I keep separate tabs for each provider that I've seen for celiac disease. In each section, I keep any lab results, biopsy results, instructions, etc.


I have a separate tabbed section for notes of places/companies I've called to confirm whether a certain product was gluten free. I know this information can change, but I like to know who I've contacted in the past.


I include various miscellaneous tabs, see below. Yours will vary depending on what topics interest you.





I also keep an updated list from our local celiac support group of restaurants in the area with gluten free menus.



And lastly, a section on celiac nutrition therapy


You could add additional sections for any celiac support groups you are a member of, or a section for recipes you like.

I now only go to the Mayo Clinic- Celiac Clinic for treatment and follow up, and all of those test results, biopsy info etc. is all kept in my Mayo Clinic binder.

I hope this information helps you and prompts you to make a binder of your own. Life is busy; make things easier for yourself (and for loved ones who may need to care for you later) by staying organized. Feel free to contact me if you need any guidance or suggestions with starting up your binder!








7 comments:

  1. Lots of info!!! Thanks for putting this all together and posting about it! Lots of good tips and ideas on staying organized. I need to do this.

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  2. Have heard you talk about this before and this has inspired me to make one for myself - thanks for all the tips!

    Shonelle :)

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  3. Nikki, this is freaking amazing. I've got to get started on my own binder ASAP.

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  4. Very nice, Nikki! Thanks for sharing!

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  5. I absolutely need to get organized like this!

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  6. Thanks for the comments! If you have any questions about getting started, please shoot me a msg!

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  7. Well, that is one wise application of data organizing. :) And in a way that is of use to actual people, heh. Usually, it seems cold and fancy, where you move things around because of spare time. But this is a case where life and death are directly at stake; not as inventory, but as active means of keeping life going. Thanks for showing this side of filing! Those are lots of files though, hehe.

    Isabella @ Endex

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