1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Article: Tackling Something Wrong - the Right Way: Christina Caskey's How To Book on Navigating the

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 6, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    From Tina - from the blog entry.

  3. pamb

    pamb Senior Member

    Messages:
    168
    Likes:
    20
    Edmonton, AB, Canada
    Thanks Tina, for what looks like a very useful book, and Cort for the, as always, good review.

    I cringed when I read the bit about records. I have several binders and yes, they most definitely could be better organized. So I particularly look forward to that bit :)
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    431
    Raleigh, NC
    Organizing is the part I like least - and the part, later, that I recognize works best. Thanks to Tina for bringing organization to the chaos :)
  5. Timaca

    Timaca Senior Member

    Messages:
    417
    Likes:
    70
    pamb~ There are photos in my book that show how I organize my medical records. (There is also a lot of written information.) It really has helped me. I work with several doctors and if one asks me a question about a more unusual lab test (like when my last brain MRI was done), I can look back and find that information with ease. I also track my routine lab work on tables so we can see at a glance when a lab result varies from the norm. This has been invaluable in tracking things like my WBC and infectious pathogen lab results. (The sample lab table in my book shows how I dealt with iron deficiency anemia.) There is a sample lab table in my book that you can copy and use. Or you can use my sample to make your own lab table on your computer.

    It also has been incredibly valuable for me to track my symptoms on a calendar. By doing so my doctors and I have seen the dramatic herx like reactions I get when I start antibiotics and antivirals. Recently I got the "crippled feet" symptom. I had experienced that symptom once before, so I went back to see when it last hit me. Interestingly enough it was 9 weeks into starting an antibiotic before (several years ago), and 9 weeks into starting this same antibiotic again. I found that to be interesting and it also reassured me that the symptom would go away because it had before (and it did this time too). A sample calendar with symptoms recorded on it is in my book (based on a real month in my life) and a blank page is available for copying and use (or you can buy a calendar for that purpose).

    There is an entire shelf in my closet filled with notebooks dedicated to Insurance and Medical Records record keeping. I think it's time for me to get well or I will have to open up another shelf for my notebooks! :D

    I learn something new every week and those items will be added to my book when I revise it in January. Please send me your suggestions as we can learn from each other.

    What I learned last week was if lab results come back "interesting" and a doctor wishes to run more tests on that blood, it has to be the original ordering doctor that orders the additional tests, not any other doctor involved in the patient's care. The original ordering doctor must contact the lab that drew the blood, not the receiving lab, even if it is the receiving lab that is to do the testing. (Trust me, that piece of info took lots of communication between 2 doctors and several labs to figure out!) A lab will often hang onto your blood (if they have any left over after running the initial batch of tests) for a couple of weeks in case the doctor wants to order more tests.

    So, there you go....it is good to organize yourself, so take the time and do it! And now you have a tip on lab testing that will go in the updated version of my book! :D

    Best, Tina
  6. Timaca

    Timaca Senior Member

    Messages:
    417
    Likes:
    70

See more popular forum discussions.

Share This Page