One of my Favorite Tools: a Medical Notebook
Those of us living with chronic illnesses often have to go to the doctor more than the average Joe/Jane. Obviously, if we’re going to spend so much time with our doctors, we want that time to be as valuable as possible. Six years into my fibromyalgia diagnosis I created a medical notebook and I can’t even imagine not using one now!
I highly suggest that you create a medical notebook that you bring to EVERY medical appointment that you have. Don’t make different notebooks for different doctors because sometimes you need to refer back to something that you wrote down or discussed with a different doctor. This also makes it easier to remember to grab your same notebook any time you leave to go to a doctor’s appointment. The kind of notebook that I’ve found works the best for me is a medium sized, hardbound notebook with a spiral. It just fits inside my purse and the hard surface allows me to easily be able to write on my lap. I store a pen with a loose clip inside of the spiral so I’m not searching for a pen while I’m at the doctor’s. (Choosing a pen with a fun color makes things a little more exciting)
Before my appointment I write down the date of my appointment and any topics we need to discuss – things like lab work results, new/worse symptoms, any changes in medication, etc… A few days before my appointment I check with The Helpful Hubby to see if there is anything I need to mention that I haven’t written down. Consider putting your notebook in your purse the night before your appointment so you’ll be less likely to forget it. This especially helps at the beginning, before brining your notebook has become a habit.
At the doctor’s I use my notes to help guide me through my appointment. Referring to my notebook assures me that my Fibro Fog won’t let me forget to mention something and it provides me a place to take notes on anything the doctor says. I write down new treatment ideas, diagnosis terms, reasons for new/worse symptoms and anything else we’re discussed. In between appointments I use my notebook to write down the dates of any flares that I have had and other things I want to discuss at my next appointment. Writing things down as I go is much easier for me than trying to recall everything at once, weeks later. I feel this has really helped my medical records show my overall health more completely. I’ve even had doctors praise me for having such great notes! Affirmation always feels good!
Another bonus to keeping a medical notebook is that it is somewhat of a health journal. When looking back over it, you can discover patterns. Read about how I realized the stress of an annual event was causing my insomnia in Fibro Feelings – Sunny Day (3rd paragraph). I hadn’t even felt that stressed.
Do you use a medical notebook or something similar?
My trusty medical notebook, given to me years ago by a friend!
Posted: May 31st, 2011 under Advice.
Tags: Fibro Fog, Health Journal, Medical Notebook, Medicine, Tools
Comments
Comment from Tami Stackelhouse
Time May 31, 2011 at 10:30 am
This is FABULOUS!! Love it!
I do something similar now, but in Evernote. I make a note that’s dated the date of my future appointment & anytime I think of something I want to bring up or whatever, I put it in that note. Then, I’ll put the answers to those questions in that same note. Then they’re on my phone & with me wherever, plus all searchable in my computer later.
I’d probably only recommend my way for gals who are well on their way to healing, or who know their triggers & routines. I think your way is much better for the gals who are trying to find a diagnosis, figure out what their triggers are, etc.
Another great reason for your method is if you’re considering filing for disability. At the later stages of the game, personal journals can be submitted as evidence. By having your fibro & medical stuff in a separate journal, it’s not like you’d have to go through and black out the Dear Diary notes you made about your hot date with your hubby before you submitted your journal. 
I’m totally writing about this on my blog today. It needs to be shared with more people. Thanks!
Tami Stackelhouse recently posted: First Commandment of Healing- Don’t be an ass Honor your body
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Comment from Amy Delacruz
Time May 31, 2011 at 4:27 pm
Thanks for this piece of advice. I’ve been recently diagnosed and am still very emotional about the whole diagnosis and have been forgetting things lately. With my husbands new work schedule he isn’t always available to come with me so I’m definitely going to start doing this.
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Felicia Fibro Reply:
May 31st, 2011 at 4:51 pm
Amy, I hope you find it as useful as I have! I usually am at my doctor’s appointments alone too. Have you checked out my Newly Diagnosed? page in the left column? I filled it with info that I wish I had early in my diagnosis. I just added it to my site recently, so you may not have seen it previously.
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Comment from Kelby
Time June 1, 2011 at 3:02 pm
This is great Felicia! I started doing this at the beginning of my diagnosis. My mother suggested it to me, especially as I was 16 and she forced me to go to appointments alone. I had to remember all of my issues all by myself. A great tool, for sure! Plus, its an excuse to buy a new pen/journal each time one is complete! Who doesn’t LOVE THAT??!! 
I also loved Tami’s comment about using it for potential disability purposes/proof. That’s a great point and never really thought about it!
Kelby recently posted: Emergency Dog Kit
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Felicia Fibro Reply:
June 1st, 2011 at 3:18 pm
Wow, you went alone at 16 years old? I went alone at 18 and 19 years old, but I bet that was a lot to handle at 16! That is awesome you’ve been using a medical notebook since the beginning. I wish I had been. I think during college I just wrote in whatever notebook happened to be in my backpack when I went into an appointment…who knows where those notes are now.
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Comment from Chelle
Time June 1, 2011 at 8:47 pm
Felicia,
I do not know why this had never occurred to me before! I’ve suffered from fibro and bipolar for almost 30 years and it never once occurred to me to keep a notebook and take it with me!
I went out today and got a nice sized, hardcover notebook and two girlie color pens. Since I am beginning the first stage of a book about my bipolar disorder, I think the notebook will be a big help with that, as well as with keeping track of all of my different doctors and medications and all that other stuff. Also, I made notes to myself today to send away for my psychiatric records going back to 2000 to see if I can reconstruct a timeline of what happened when and what medications they tried me on that did and didn’t work. I also made notes of my visit to the psychiatrist today and the new medication he is starting me on, as well as what he already has me on and the dosage. Next week, when I go to my primary care doctor, this notebook will be in my purse when I walk out the door and I will know what I am taking from the other doctor without having to think about it!
Thanks! You have a fabulous website, btw!
Chelle
http://www.lifeonthedomesticfront.blogspot.com
Thank you so much for this post! Sometimes an idea is so obviously, but it takes someone else to point it out to you!
Chelle
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Felicia Fibro Reply:
June 1st, 2011 at 9:46 pm
You are on a roll, Chelle! I’m impressed that you’re being sure to even add the highlights of your previous records to your notebook. I’m flattered by your kind comments, thank you!
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Comment from Chelle
Time June 1, 2011 at 8:48 pm
Um, don’t know what happened there…must have been the fibro fog! I only meant to sign my name the one time. LOL
Chelle recently posted: Today I Am Bipolar
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Comment from Buddhacanvas
Time June 2, 2011 at 1:17 am
I have had much more success keeping up with my symptom log since you suggested just tracking what comes. By noting things as they happen (in pages for iPad) I focus on the symptoms rather than form layout, columns etc. I can then clean it up at the end of the month. I really like this because I can eliminate double notes. When I tracked on paper I felt I had to reread all that came before to eliminate double posts and I would often forget what I wanted to write. Also the note form means you don’t have to worry about reformatting your page for each new symptom
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Felicia Fibro Reply:
June 2nd, 2011 at 2:58 pm
Buddhacanvas – I’m so glad that you’ve been having success with your symptom log! Thanks for sharing that you find pages in iPad to be easy to use for it.
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Comment from Ang
Time June 2, 2011 at 11:13 am
I’ve been using a notebook for several months now. As a newly diagnosed fibro gal, it was just too much for me to remember, with several different kinds of doctor’s appointments and treatments. I carry the notebook, and a small calendar, with me everywhere, and I use it for everything… my fibro fog has been getting worse, and sometimes it’s even hard for me to remember what errands I have to run, or what phone calls I need to make. I even use the notebook for shopping lists, notes to myself, etc. I have a separate diary I’ve been using to track symptoms, pain levels, meds, etc, but I use the notebook to make the original notes at the doctors. It’s pretty much my portable brain at this point!!
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Felicia Fibro Reply:
June 2nd, 2011 at 3:27 pm
It sounds like you’ve figured out a perfect system for yourself, Ang! I also keep a list in my purse of the errands I need to run and the things I need to buy. My calendar is in my phone, so that is always with me too.
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Comment from Darelene
Time November 19, 2011 at 6:56 am
Do you keep track of foods you eat in the medical journal as well? I have read that diet can factor in to fibro pain. Although in one article I read it said don’t eat this….then later said it was good for you!
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Felicia Fibro Reply:
November 19th, 2011 at 12:01 pm
Currently I don’t, but there have been times in the past where I’ve recorded that information. Food doesn’t seem to have much of an effect on my fibromyalgia, although it does on my IBS. Of course, many others to have food triggers for their fibromyalgia. We all seem to react differently to our sensitivities. One way to find out if a particular food is increasing your symptoms is by doing an elimination diet. I did this and you can see all the posts I wrote about it here: http://feliciafibro.com/tag/elimination-diet/ The first NFMCPA magazine had an article about it too.
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Comment from Kat Collins
Time August 31, 2012 at 11:27 am
This is a great idea! I was diagnosed with fibro in 2007. Lately, I’ve been having a harder time remembering things, so I’m definitely going to start using a notebook. Wish I had thought of that in the beginning! My iphone is a godsend, helping me keep track of appts, etc. I love the calendar and pop-up reminders.
Kat Collins recently posted: What is Fibromyalgia?
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Comment from Nicky
Time December 19, 2012 at 9:04 am
Great idea….can’t count the number of times fibro fog causes me to forget to address issues..will be getting a journal pronto!
Nicky recently posted: Approaches that help my fibro
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Comment from Felicia Fibro
Time December 20, 2012 at 11:41 pm
I hope you guys find it helps you as much as it does me!
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Felicia Fibro Reply:
May 31st, 2011 at 10:53 am
Thanks for bringing up electronic versions of a medical notebook – for some that is certainly the most convenient way to do it. It was actually your comment from last week’s post that got me thinking about finally writing about my medical notebook. I didn’t realize just how much I had to say about it until I got writing!
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