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All Is Not Well In Sclerodermaland

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26 replies to this topic

#21 Joelf


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Posted 13 May 2011 - 01:28 AM

Hi Miocean,

That is good news that you're feeling better without having to increase your medication and also that you've managed to get an appointment with a scleroderma expert within the next 2-3 weeks. :yes:

I do keep copies of all my medical notes, blood tests and future appointments in a ring binder; this has the advantage of easily being able to refer to them should the doctors or hospitals contact me. Also, I deal with three different hospitals plus my general practitioner (who is always the last to be told about anything, poor soul!) and unfortunately they are all notoriously bad at informing each other of the treatment I've received. However, my notes are obviously not nearly so copious as yours and I realise that it might be quite difficult for you to cart around a tome the size of Tolstoy's "War and Peace" every time you have a consultants appointment!! Posted Image Posted Image Perhaps you should just take the parts of your notes that are relevant to that particular consultation? I suppose even that would be a large amount of paperwork to deal with!

I do hope your consultations on 3rd and 10th of June go well and I'm so glad that you're feeling a little better. :flowers:
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#22 Sweet


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Posted 13 May 2011 - 10:03 AM

I just want to give you a BIG HUG!!! :emoticons-group-hug:
Warm and gentle hugs,

ISN Support Specialist
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#23 debonair susie

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Posted 13 May 2011 - 10:54 AM

I'm with Sweet and want to give you {{{Big Hugs}}} too, miocean!

I believe it's a good idea to keep all of your records, with regard to your medical information, especially in your case. It's very helpful for the doctors, in order to help you if/when they work in a facility outside of the ones you frequent. While in the exam room, let the nurse know all that you have (with you) and she may then give the dr the information prior to visiting with you. Otherwise, you may ask the dr what he/she prefers to see. I've had doctors run copies so they can have the hardcopies for future reference. However, it seems most offices now have everything computerized, which is so great! Makes it less stressful for the patient and the dr.

I am SO PROUD of you...You are a shaker and a mover :terrific: ! I'm glad you have everything set up and will look forward to hearing how your appointments went.
Special Hugs,

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#24 enjoytheride


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Posted 13 May 2011 - 08:41 PM

Re: boxes. I have moved a lot in my life and can tell you that letting boxes sit for awhile has one good result. By the time I got around to unpacking, I had forgotten the things that were in them. It was like holiday when I opened them and found so many wonderful things. The nicest part is I usually loved everything I "got" because they were just what I wanted. At least that is what I thought when I bought them originally.
And pretty material over boxes make lovely end tables. And who knows what boxes hide behind the sofa. So many options.
I'm glad you feel more upbeat.

#25 janey


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Posted 13 May 2011 - 10:47 PM

It's all good news!!!! Let's keep it going.
Janey Willis
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#26 Shelley Ensz

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Posted 19 May 2011 - 07:48 AM

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
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#27 susieq40


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Posted 22 May 2011 - 06:58 PM


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!!