About Me

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I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.

Thursday, August 16, 2012

Why I'm not their favorite patient.

I might be many things. Loyal, friendly, quirky. But there is one thing I am not and will never be- my doctor's favorite patient.

There is a reason for this. I take my diseases and my health very seriously. And I always prepare for my doctor appointments ahead of time. I come to each doctor's visit prepared with a list of questions. Seems reasonable, right? I mean, isn't that what doctors want? They want you to be an active participant in your care, right?

Okay, so maybe there is a fine line between being a proactive patient and being insane. I'm not sure what side of the fence I fall. Yesterday, I had my first follow up to the spinal cord surgery. I'm pretty sure I was scheduled for only 20 minutes. I always try to warn the receptionist when I make an appointment to make it for "a little longer," because I come armed with a lot of questions. They never take me seriously. Well anyways, so during the visit, after the physician's assistant reviewed my xrays with me and talked about the next steps, she asked me if I had any questions. I told her I had a few.



Like, a page and a half of questions, double spaced. I pulled my question list out of my purse and watched her eyes get big. The only thing should could muster out of her mouth was a helpless "Okay." We did get through all 21 questions, and my 20 min office visit turned into 45 minutes. Some questions were of higher importance, like asking about prevention of future problems. And then there were questions like #11, "Can I get my hair done now?" (The answer was no). Which led to a Part Two question "When can I?" (Answer: we'll re-visit the question after next appointment in 6 weeks).

Sidebar: Look, I'm a chick. I need to get my hair done. The girl who does my hair actually facebooked me because over the last 8 years I've never missed my every 8-week appointment and she hadn't heard from me and got worried. I need my highlights, my lowlights, and about 5 inches cut off my hair. All this lack of grooming is making me depressed. For crap's sake, I haven't been able to BEND my back in order to shave my legs for the last 6 weeks or paint my toenails. Give me SOMETHING!!! (TMI TMI TMI).

When I got home, I used my scribbled notes I wrote to type up a more thorough question/answer sheet that I can reference later.

Yes, I'm pretty sure my doctors demand double the payment from my insurance company for my visits.

Look, I have a type A personality. Always have. I can't shake it. I've always been thorough and organized. It's the business analyst/project manager in me. And when you have more than one illness to take care of, you NEED to be organized. I have a binder assigned to each one of my illnesses. Some are thin binders (Grave's Disease) and some are the thickest ones Office Depot offers (Diabetes and Celiac Disease). I now will have one for my spinal cord surgery. Everything related to those diagnoses go into the respective binder. Every lab result, medical record, question and answer sheet, brochure, business card, referral paperwork, you name it, it all goes into the binder. I have dividers for different sections in them. When I go to my doctor appointments, I bring the respective binder with me. The doctors who have been with me since the beginning of my diagnoses are used to it, if not fascinated by it and like to look in it. The new doctors are the ones who are more bewildered by it.

I don't feel embarrassed by this because guess what, at the end of the day, I get to go home and manage my diseases, not my doctor. I see them once every 3-12 months for 20 minutes a pop, whereas every other day during the year I am using that information obtained in said 20 minute appointment to manage my disease and keep myself, you know, ALIVE. So yeah, I want to be as thorough as possible because who pays the price if I don't remember all the information because I didn't write it down or didn't ask the question? That's right, I do.

I'm quirky and organized and thorough. And proud of it! :)

So no, I probably won't be winning any Patient of The Year awards anytime soon. But in the end, I take home the bigger prize.




9 comments:

  1. Good for you! Way to take control of your health and do what you gotta do! I always forget any questions I have for the endo, it's like stage fright or something.

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    1. BTW, I love ur 101 List! How creative!

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  2. Ha, ha, ha! :) I love this post!! When my daughter was diagnosed with type 1, last year, I quickly learned that the ONLY way to manage this disease was to be as insanely organized as possible. I now show up to her endo appointments with MY binder and pages of typed out questions, too! I re-created my own version of a log sheet (as theirs did not have even remotely enough detail), I print off comparison charts of her Dexcom data from the last three months to current, have all of her supplies organized and labeled, an excel sheet of all of her prescriptions organized by place and date to refill, etc. etc. And when her doctor was very insistent that we go with only one kind of pump, I even made an entire PowerPoint presentation comparing the top three and explaining our reasons why I thought the Omnipod was best for my daughter...and they agreed! Yes, they may think I’m nuts, but it is my job to be the strongest advocate for my daughter (she’s only 4) and her health and happiness is way more important to me than what her doctors think of me. I’m currently working on a binder for her new preschool teacher because they sent home a TWO page information sheet on how to care for her. Seriously? I have turned those two pages into a fifteen page binder, complete with divider tabs and reference materials. They are either going to love how easy I’ve made it or think I’m crazy…we’ll see at our meeting next week!

    BTW- I have to say what an amazing story your spinal cord injury is…truly a miracle! The way you are handling it, plus all of your other health issues, is such an inspiration to me. If you can stay positive through ALL of your daily challenges, then I can surely do the same for my daughter's one diagnosis. Your light truly shines far and wide! Thank you for sharing some of that sunshine. :)

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    1. Thank u so much Paige! I can't imagine the difficulty of having a child with T1. I can tell you are a strong ORGANIZED soul! (A woman after my own heart LOL!) Stay positive, I know you can. There is always something good to focus on, even during the hard times!

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  3. I LOVE the binder idea!! I'm a crazy organized person too and can't believe I haven't thought of this! Good on you for taking control of your health. Let's be honest, our doctors get paid a hell of a lot of money and, like you said, at the end of the day we are the ones that have to go home and live with our diseases every single day!

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    1. MMhmm. You said it girlll! And yes, you should start a binder, too. It's so convenient to have every piece of information ever given to you about your disease all in one spot. Figure out how you want it organized- by date? by provider? by topics? Whatever works for you!!

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    1. Awww thanks to my favorite 'Bou boo!

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  5. I know my endo is under a time crunch and does not get reimbursed nearly enough for my appointments, but I don't let her leave the room until I am done with my list!

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