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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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Discussion in 'Finances, Work, and Disability' started by glenp, Nov 26, 2009.

  1. glenp

    glenp "and this too shall pass"

    Messages:
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    16
    Vancouver Canada suburbs
    While you are working keep a diary of all your negative symptoms, if your memory and cognition is affected you will forget. Write down all the horrid things that happen to you because of this illness. Write down allowances that were made for you at work. Write down all that you had to do extra to keep your job. Note all of the times that you were absent due to illness and where you may have had to cut your hours. Note all of the mistakes that you made at work Keep a copy of all of your med tests and doctors reports. I know it doesnt sound nice but list those bladder and bowell accidents, falling asleep at lunch or behind the wheel. All these things add up. Most doctors will not spend the time to fill in the reports properly and do not send in all of the reports. There is not enough room for all the information on the ccp disability so I would add a few pages of your doccumentation. I got advice from many on the internet and from cpp disability office before I applied and got it first time backdated to 3 months after I left work. I had copies of my med tests and sent them in myself. (pleez excuse my vocabulary - I know you all understand)
  2. blackbird

    blackbird caged.

    Messages:
    100
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    0
    UK
    Did you ask each time for copies of med tests from your doctor?

    I haven't done that, but have been thinking of asking for a full copy of my medical record.
    Can I just ask the doctor for that, or is there some other procedure?
  3. Victoria

    Victoria Senior Member

    Messages:
    1,371
    Likes:
    127
    Melbourne, Australia
    Blackbird,

    I don't know about other countries, but in Australia, you are entitled to a copy of any medical record.

    I started off by keeping xray & u/s & MRI scans reports around 1980.

    Then, quite by accident I happened to have medical account receipts in a box.

    Then it grew.

    Whenever I went in for surgery. or procedures, or to a new specialist, I couldn't remember what test or health problem or surgery date, so I started putting everything in date order.

    I kept all my pocket diaries where I had written "serious hip pain for 3 hours" etc.
    And when I had recorded "basta.....d so & so would not listen when I asked for help". My record keeping proved beyond doubt, that when I had a breakdown in 1998, it was my employer's fault. I had been communicating my inability to handle an increased workload for over 18 months.

    I have a record of several emails, letters & the like, where I had sessions with my work counsellor.

    And then when I got frustrated with the prejudice & harrassment & other abuse, I used to release my anger by typing a letter or document just for myself (to get it all out of my system). Those documents I have still kept on file.

    I now have sufficient documentation (together with medical evidence) to support any claim I might decide to make in future.

    I guess alot of this record keeping was my own way of proving to myself, in my own mind, that I wasn't making it all up, or turning into a hypochondriac.

    I really needed to prove to myself that the whole sorry saga was REAL.

    I even have records of conversations.

    So now, if I ever chose, or have to give up my job, I have 3 large files of records about 12 inches high (literally hundreds & hundreds of records & receipts).

    I started keeping a diary when awake all night, expressing my anguish, pain, suffering & frustration - perhaps about 300 pages now. I don't write so much now as I sleep better.

    I could easily write a book.

    But yes, you should be entitled to your medical files. I imagine any western country would have laws for such a thing.

    In my diaries, I have a record of every time I was late to work, or left early. Every time I had to leave work because I was too ill to continue. And every time I had to get a taxi because I was unable to walk. And of course every day, or week, or month, I was unable to go to work at all.

    So if you are newly diagnosed (or even un-diagnosed), start keeping records now (& we can only hope you never need to use them in court.

    Victoria

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