What's in your medical journal?

I remember the day like it was yesterday.

I went in to the rheumy for our first appointment. He sat me down, pulled out his computer, and asked me TONS of questions. Unfortunately, I had NO answers. I'd never really been sick before. I felt helpless.

He eventually turned to me, and with all the concern in the world said, "Mechelle. If you don't know the answers to these questions, I can't help you. You need to start a medical journal."

I started one, and it's helped me so much over the years. Many times my nurses comment on how organized I am. It's the only one I can stay sane.

So.. here's the question. What's in YOUR medical journal?

I'd love to hear from you all. Do you have different sections in it? How often do you update it?

Any advice is appreciated..

P.S. I just found this! A website that helps you create your own journal step-by-step

http://www.areyouoneinfive.org/_pages/health_journal.htmhttp://

P.P.S. Isn't this cute?!


I have a journal I just start about four weeks ago. I write in it every day! The funny thing is I guess when you don’t think about it you do not realize that you are have symptoms every day. I write about how I am feeling as far as symptoms go and what medications I take each day.

The link that you provided does not open. Can you repost it. I would like to see it.

Thanks
Deenie

Awesome, Ann! Thank you for this! I will work on my will next month. I'm only 31.. not thinking about dying.. but you never know. It will bring more peace to my family if I'm organized and they know exactly what I want/need once I'm gone.

Ann A. said:

Dear Mechelle,

My Family Health Portrait - A Tool from the Surgeon General https://familyhistory.hhs.gov/fhh-web/home.action

One of the most important things in my medical journal is a fairly complete family health history - A portrait of my family's health. Family health histories are extremely important. But they take a great deal time and as we all know physicians are not generally willing to give us that much time in their office. They are also generally not willing to sit and listen while we orally present the health history of our family. So getting the information on family health and organizing it has become one of the responsibilities that patients have. Some years ago the Surgeon General of the United States started a Family Health History Initiative.
http://www.hhs.gov/familyhistory/

Every year since 2004, Thanksgiving Day (the third Thursday in November) has been declared Family Health History Day. The Surgeon General has also supplied instructions on collecting family health history and some tools for simplifying their organization.

My Family Health Portrait - A Tool from the Surgeon General

My health journal also includes my living will - Hey, I have been having a lot of surgeries. I don't want any misunderstanding about when the plug should be pulled. I also want it clear that my very sweet and caring daughter gets to decide when the plug is pulled. But my sweetie loves to shop till she drops, so my much more frugal and organized son gets the financial power of attorney. And of course, I keep my will there too.

Hi mechelle,

That pic's cute and the tablet box...i have one that contains 4 of those, for medication 4 times daily.

Mechelle i don't have a journal because i did one years back with my family help for my seizures and when i took it into my neuro he did a quick glimps of it and gave it me back and that really hurt as i'd done it for months keeping control of what was happening with my seizures with my parents telling me the time it started/ended and more.

Now for my Lupus i just give them what i know is up with me and anything i can't remember my hubby ste tells them...but i do recommend it for member's just starting out with symptoms and seeing specialists.

Nice thread though. xxx

I recommend it too.. especially for people who don't have caregivers like myself.

It helps because I can't remember a lot of things that happen to me. When I write it down, it makes it easier.

Thanks for sharing, Terri.

Deenie,

I agree! Writing down symptoms is such a good idea. I find it hard to remember things to tell my doctor after they happen. If I write it down, it makes it so much easier for me.

Thanks for sharing! Were you able to open the link?

Dewing3569 said:

I have a journal I just start about four weeks ago. I write in it every day! The funny thing is I guess when you don't think about it you do not realize that you are have symptoms every day. I write about how I am feeling as far as symptoms go and what medications I take each day.

The link that you provided does not open. Can you repost it. I would like to see it.

Thanks
Deenie

Hi Mechelle,

That's a good reason to do a journal anyway because of what you've stated.

especially for people who don't have caregivers like myself

Mechelle said:

I recommend it too.. especially for people who don't have caregivers like myself.

It helps because I can't remember a lot of things that happen to me. When I write it down, it makes it easier.

Thanks for sharing, Terri.

I have the problem of remembering tons of details and small concerns, and spending a lot of time “collecting them” and then later bogged down in prioritizing what’s important to bring up… My mom suggests a journal so I can write it down, stop worrying if I’m going to forget something important, and move on with my day. I like this idea, but if I sit down to write it, I end up brainstorming or looking back further or deeper into it to try not to miss anything! I’m really curious about biology and medicine in general, so it’s more about fascination and seeking understanding rather than being consumed with worry, although it definitely seems I have some obsessiveness/anxiety going on as well to get so consumed. Thing is, I enjoy thinking about it, researching it, writing about it… But don’t have enough hours in the day as is!

Overall, it’s hard to make the call whether time spent writing things down will waste time or save it in the end… I get the idea setting up standard protocols for what and when to write will continue to help, and although I do this to some extent now, it could use some more tweaking!

Suggestions? Here are a few things I currently do to help myself:

  1. If I feel a few days of symptoms or health event are significant, or especially if it’s mysterious or unexplained by my current diagnoses, I’ll document in-depth everything going on in that slice of time, including symptoms, meds, potential triggers, and the timelines of these. If I cut out things that don’t seem related, I’d actually be editing out ahead of time things my doctor may need to know!
  2. Otherwise, for commonly presenting visible symptoms, like rashes that hang around all the time until the day I’m in the office for my appt, etc., I snap a picture on my phone. If I show any, it will only be if I need an example, but not a priority for the visit.
  3. The day before or day of the visit, I scroll thru my vast memories and impressions, as well as any notes, and decide the priorities to bring up. Usually I make a brief bullet list to reference at the visit, so I don’t spend too much time on smaller issues and forget something more important, and so I can relax about feeling like everything was covered. It makes the visit go much smoother and faster, and can help a lot if you’re seeing a doctor who tends to be less structured!

Other than that, I have some history lists and timelines I jotted down when I read through my own complete medical record after I moved, since I definitely won’t browse it all over again! Also, I have more free-form journaling on life in general (sporadic) that I look back to for psychiatric concerns. It is now helpful to pair those dates to evidence of physical flares from my medical records, since up till now I was tracking them as unrelated except for the “added stress” view of getting sick easily while depressed, or anxious easily while sick, etc… It’s a chicken-egg game, but time sequencing can give a lot of insight, and is pretty important to me as I work through the likelihood of having CNS involvement. In the past, my selective reporting (not by my choice, I’m clearly very thorough, just the time, expertise and patience constraints of my doctors) has led to missing a lot of key details that may even have been very dangerous (I will describe a particular episode in mind at some point, I’m sure… But it’s frankly a little intense till I get to know you all better!)

How do you avoid the frustration of feeling you have journals filled with more than any doctor will ever hear?
That you feel is more importand and potentially life-threatening than anyone will believe? And you’re only a month and a half into a merely provisional diagnosis? And you know you could’ve gone forward to doing their job better than they do after the 10 years more of schooling you decided to dedicate yourself to… Before you got too sick to seriously consider it anymore.