Day 189: Being a Professional Patient

After 10 months of being sick, a girl can learn a few things. 

Not just about life, but about process...when to hold 'em, when to fold 'em. I can't tell you how many times I've said to myself "MAN, I wish I would have known that sooner" regarding doctors/treatments/paperwork.  So, in an effort to spread the wealth, here are a few things I've learned along the way or wish I would have done differently.

Document Everything
Gotta new rash? Strange stuff coming out of your body? Take a picture and save it (in print and on line). I swear...I'd give ANYTHING to have photos of some of the things I've shown previous doctors...especially stuff from the VERY beginning (rashes, secretions, etc). I know...it's weird...treating yourself like a potential CSI case.  But trust me...if things go nutso...you'll WISH you had bothered to save the evidence.

Stop Doing Double Work
If you go to more than one doctor, you will be asked to fill out the same information over and over and over again.  Easiest way to avoid that? Make up your own patient history form that includes a list of past surgeries, hospitalizations, accidents, traumas, insurance info, treating doctors, emergency contacts, medications/dosages, allergies, lifestyle habits, and other relevant information. When you get to that section on the patient history form write "see attached." Such a time saver (She says after recreating her patient history for the umpteenth time). Why didn't I think of that sooner?

Get Copies
Copies of doctor's notes, copies of research articles you find, copies of bills. Copies, copies, copies.  My friend Delores prints a copy of every internet article she finds related to Lyme Disease and puts it in a binder. Another friend, Cindy, gets a copy of notes after each visit. To get lab results quicker, write your fax number on the order form...that way they will come to you--not just the doctor.

Write Things Down
Keep track of what's happening, when it's happening, and how it relates to outside factors (medications,* monthly cycles, activity, etc.).  To view, how I keep track of my symptoms, go here. Have a question that pops up between visits?  Write it down (trust me, you won't remember). Then, date the list and take it with you to your next appointment.

Keep Your Cool
This was the hardest lesson for me...especially when dealing with a disorganized or incompetent staff.  Initially, I wrote off many offices for lack of getting a return call. One time, I stormed out of a cardiology office after getting booked with a PA instead of the doctor. While I am not suggesting you settle for poor service or rude behavior, I am suggesting you spend your energy wisely.  My new motto? I am here to get well -- a job that may require navigating a broken system. Can't get your phone call returned? Fax or have a healthy friend call for you. Need a question answered, but don't want to pay for another appointment?  Show up (uninvited) before the office opens. I've had lots of great consults in parking lots or by catching people on the way to the bathroom. Bottom line? Don't let your ego (or temper or righteousness) get in the way of your treatment.

Find a Mentor
After months of being sick with no diagnosis, I felt bonkers.  COMPLETELY CRAZY!!  The only thing that saved me was connecting with smart, competent people who'd been there before me. When I didn't know what was happening or what to do next, I'd ask them (still do). Then I had to learn to trust their answer (hard for a control freak). Educate yourself. Make your best choice. Then move on. You'll learn who to respect, what makes sense to you, and what path to follow. Just Listen ...to yourself and others.

Have more advice on how to be a smart patient? Please email or comment. I'd love learn from you.

Altered Today: Sharing my secrets, asking for yours.

*6/9 UPDATE...Just got this really great note and med tracking sheet from my friend Pete Smith who can be found on line at raisinglymeawareness.blogspot.com. To see how to use it, Go Here. To access the spreadsheet... Download Pete Meds_Sample.  THANKS Pete!

Comments

[Andrew Peterson]

Great post! Here's a couple more that I've figured out over the past few years:

1) "Shake your doctor's hand." You've been placed in the exam room by the nurse and you're sitting around waiting. You hear the doorknob turn and the doctor walks in. Don't just sit there. Stand up. Step forward. Extend your hand and introduce yourself. Why? First, it shifts your physical and mental state, from a passive recipient to an active participant in your own care. Second, it communicates to the doctor that you are present, active and engaged in your own treatment. The nonverbal message is: "let's you and I work together to figure out how you can help me heal."

2) "Record your doctor appointments." This one comes naturally to me because I am a sound guy and I like to record all sorts of things anyway. But it came together recently when I was thinking about how hard it is for me to retain all the information I receive during those precious few minutes I get with my LLMD. I started bringing a hand-held digital recorder to my visits and letting the doctor know that for the sake of my treatment I'll be recording our appointment. I jokingly refer to the recorder as my external brain. Any LLMD worth his or her salt will understand immediately. I record the appointment and then a day or two afterwards I listen back to check what I "think" I heard against what the doctor actually said. It's been an invaluable help as I try to implement the insanely complex treatments that we're all navigating.

Andrew Peterson
Author of "The Next Ten Minutes: 51 Absurdly Simple Ways to Seize the Moment"
http://www.thenexttenminutes.com/

[Alter Everything]

Ohhh....yes. I remember reading about the recorder on one of your posts. That's a good one. I love the idea of switching your mental state too. Soo important. Thanks, Andrew!!! XOXOX

[Melissa]

So awesome Kathy! I love this. I started writing downmy medical history a couple of years ago and it is one of the best things I've done. It does save so much time, especially when it is exhausting to write! Thank you for sharing your wisdom. And you too Andrew! I love the 'shake your doctor's hand' suggestion! Such a great way to 'present yourself' to him/her and like you said, it communicates so much in that simple action.

The only thing I would add is research, research, research and research some more. And on top of that, ask others to ask around...for resources, for contacts who may have gone through a similar illness and for help. The sicker you are, the more help you will need. Don't take what one doctor has to say as truth for you and your situation. Take what they say and research every term, treatment suggestion, etc. Be your own doctor, your own advocate, your best supporter and fight for what you believe is right!

[Alter Everything]

Good Advice, Mel. Every time I have a doctor's appointment, I come home and research everything. Every test. Every comment. Every pill. Everything. Usually, two days later, I have a whole list of questions to ask. It really makes a difference.

Also, the trusting yourself thing is sooo important. What works for some, may not work for you and visa versa. It's like making the perfect cake...a lot of knowledge + a little faith + Self-confidence = good advice. :) Love you both!

[Alter Everything]

Submitted to me via email (thanks Tiffany)...

Kathy GREAT advice!!!! I loved it! And yes, I'm glad you mentioned getting a copy of your records after each visit. I worked for a medical office for years and if people dont get a copy right away, then they have to pay an arm and a leg for 1 note. I tell people all the time, when they call you with your results, TELL THEM to mail you a copy with the doctors note! Best idea.

[victoria]

thanks for the recorder idea, my husband takes notes but we can't disifer them. abd yes i get all the notes and sometimes i don't even believe they are about me but another patient???? Yes we need to be our own advocates.

[Alter Everything]

Thanks, Victoria. Hope you are having a "good" day...

[Joanna]

This is a really great list! I also have a binder of all my notes, all the letters from my disability insurer, all the applications that I have filed for our federal disability program as well as my insurer, and all the correspondence between myself and my employer.

The only thing I'd add is to ask your pharmacy to photocopy your prescription and hang onto that too. I've had pharmacies give me the wrong med or the wrong count of med. With a copy, I know exactly what I was prescribed and when.

Thanks for this list!

[Laina]

My personal opinion is to get to know hospital (or doctor's) staff. After having worked in a hospital for 11 years, and particularly in Oncology where we had our regulars, I can tell ya, the nurses know. Especially in a hospital setting. Most will be particularly cautious of any slander, but if you ask them point blank, "If it were you/your family member who would you want to go see, and why?" Also, go ahead and think about getting an advance directive if you don't already have one. Most hospitals have this in their admit packs/patient handbooks and will be more than happy to give you one if you ask. Fill it out and make sure it's witnessed by 2 people who have no influence on your decisions (in hospitals house keeping and clerical personnel are normally the ones to witness). After you've got it all filled out, keep your original in a safe place and make a ton of copies. If you're ever admitted take a copy with you along with a copy of your history and medications. That will save you a lot of time and stress and will be a huge help to the staff. Let me know if I can give you any more advice on the behind the scenes stuff, that's what I know better than anything.

[Joanna]

Kathy....after I read this, you inspired me to make a list of my own and post it on my site. So please feel free to check it out here: http://www.constantly-in-pain.blogspot.com/2011/06/being-good-patient.html

I've also referred my blog-buddies to your site.
Thanks for inspiring me!!!

[Alter Everything]

You ROCK!! Joanna. This is great!!! Man, I have met the nicest people on line. SOOOO generous and soo caring. Thank you, thank you, thank you! PS Your list is awesome!

And Laina--my sister from another Mother--I love your personal opinions. An insider view is exactly what's needed here. Thanks for constantly sharing yours with me. It's getting me healthy. Love you girl!

[Saima]

Lol she brings classroom leader to chronic illness. I love it. I wish I had been half this organized when I was seeing several doctors at a time. Truth is, I'm still not - but I have often thought I should be.
Well done, Kathy Tagz

[Alter Everything]

LOL Saima. I love that we have these conversations where nobody knows what we are talking about, but us. YES...Classroom Leader is in the house!!! XOXOOX

[Pete Smith]

This is great Kathy. Thanks so much for sharing.

I have an entire filing system for medical records, blood tests, bills, etc. all in a bin in my room. Plus I have a "Pete Medical" notebook for all related info (e.g., doc questions, notes). The most important thing I have created is a huge excel sheet where I track my medicines (make a new, updated sheet in the database each time I update it) - what I am currently taken, have taken in past, dosage, how it affects me, who prescribed it, etc. It is so helpful to give to every new doctor! I'm happy to share via email if anyone would find the outline helpful (you can just erase what I have and fill in with your own...). Please let me know.

Pete Smith
http://raisinglymeawareness.blogspot.com/

[Alter Everything]

This is awesome, Pete. Thanks so much for sharing what works for you and your med file (posted a link to it above at the end of the article). If it helps just one person to not have to reinvent the wheel, it will be worth it. Love, love, love for all you are doing to help yourself and others. XOXOX

[Cindy]

Good stuff!!!!