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All Is Not Well In Sclerodermaland

27 posts in this topic

Hi Miocean,


Years ago, my doctor had me compile my medical history and showed me how to organize it. He had me break it down into major bodily systems or areas, such as Skin, Skeletal, Neurological, Surgeries, Family History, etc. with a master summary of findings for each section, plus a master summary using each of those main section sheets, plus an even shortened one-page overview of it all.


He emphasized getting it all boiled down to one simple overview page, with the main summary pages by system attached. After that, hardly ever did anyone ever ask to see any of the actual documentation which I had labored so long and hard over.


I had a binder only for lab work and biopsies, with summary sheets, because these things ended up scattered about the main album and then you couldn't see them at a glance.


Every section and page were numbered, for example, Skeletal (bones, joints, muscles -- things like carpal tunnel and tendonitis) being assigned Section 12 and then page numbers, such as 12-1 and if I had to insert pages later, then 12-1a. The master summary sheet would then have the page numbers for each assorted diagnosis. I would list only the date it was first diagnosed, and the starting page number, and what center or doctor diagnosed it, the treatment(s) or surgeries, along with an extremely brief remark, such as "No problem since surgery" or "Side effect of medication."


I also had a recap page for all surgeries because they end up scattered about the different sections; and another recap for medications, in alphabetical order, showing when they were stopped or started. To this day those summaries come in handy when I am seeing any doctor outside of my computerized clinics. Many pages would end up copied into other sections, and I'd use a highlighter for that particular remark.


The point of making the entire medical history with documentation is, in the end, to make it extremely easy for doctors to absorb at a moment's glance and for you to be able to pull out the relevant page(s) at a moment's notice so that you can breeze through the doctor's appointment. The more complicated your medical history, the more important it is to be able to summarize it clearly and quickly so the show can get on the road with the issue(s) at hand, rather than waste the whole appointment belaboring the history to get the doctor up to speed.


I've found the vast majority of doctors don't even so much as glance at the chart before seeing the patient, so it is a huge surprise to them why we are there and what we are expecting. Anyone with a complex history should beware that even the best doctor is likely not up to speed at all -- about anything -- and this can easily derail an entire appointment for those who are not on computerized systems. And even then, never assume that they've read your computer chart; they are usually trying to eke what they can out of it while we sit there.


The main summary sheet is especially appreciated by my doctors. They adore getting "just the facts, ma'am" and having all the important things listed plainly, clearly, and simply, helps them enormously in providing the best advice.


Good luck on putting things together. Let us know what you come up with, won't you?

Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is sclero.org.

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I'm a little late in the replying, but thinking of you, none the less!! I hope all is going

better. I know there are days when I feel completely overwhelmed, time to just let

those things that are less important...stay that way for a while...Hope things are going

better!!! HUGS HUGS HUGS!!



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