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Thread: What do I need to say???

  1. #1
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    Default What do I need to say???

    I haven't been able to see my rheum in a while b/c of lack of insurance. I will be going soon and I want compile a list of all the new things that are happening to me but I'm not sure what is important and what isn't. I have been having things go wrong just this last month that have never happened to me before. So here is my list thus far tell me what you guys think..something to stress to the doc or just a mention here and there...

    -I have lost strenghth in my hands to the point where writing a check is a struggle.
    - I have almost lost all of my sense of taste and smell.
    - I will text my husband and he'll texted right back with an answer but i will forget what I asked....just an example of the memory loss I've been having...and it's with everything....today my sister was driving me home and for a moment i forgot where I lived.
    - From time to time I lose feeling in my fingers and toes (not at the same time though)
    - I just had my yearly eye exam a few months ago and they said my perscription stayed the same but sight keeps getting worse. Like fuzzy. It's hard to describe.
    -Insomnia. The other day I was up for 40 hours and then only slept for about four hours and haven't had a full nights sleep since.

    That's what I've got so far. I'm sure something else will arise between now and then. Any imput would be helpful. Thanks a bunch guys.

  2. #2
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    Default

    Hi sweetie,

    You've got a good list here - write these things down, and if you can, make 2 copies. One for you, one for your rheumy when you go.

    Many times the doc won't spend a lot of time - you're paying for his/her expertise and so you need to USE the time as best you can. Taking a written list helps both you and the doc. If you're like me, with no list I get in there, am asked "how have you been doing?" and my mind goes blank...."um...fine I guess." Our memory issues mean we're not called "lupies (loopy)" for nothing!

    Write these things out - add to the list as you think of things. And give the doc a copy, keep one for your files.

    Hugs - and so glad you have a visit scheduled!

  3. #3
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    Default good list so far

    I think this sounds like exactly what your doctor (and the disability board) want to hear about. They need to hear and document about how Lupus changes your functions on a daily basis.

  4. #4
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    Default

    Great idea. I'd definitely take this list to you doc.
    Missy

  5. #5
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    Hi Lovebuda,

    I agree with Hatlady about making 2 copies, however, I would go as far as to make 3 copies (incase of referrals, etc.)

    I suffer from all that you have described, and while it is frustrating, the sooner you communicate what's going on - the better for you and the doctor. I know there will be times when it feels like "this stuff just never ends"....and well, at times it can slow down - but we need to keep our minds and hearts focused on what STILL WORKS! if you know what I mean (smile).

    I usually keep a spiral notebook in my home office and before I go to bed for the night, I write down notes, questions, concerns. Currently I'm seeing 7 different doctors and it can be a little confusing to try and remember what symptoms happen when.

    Stay connected with all the wonderful people here; they have been my life-savers when I thought it was all too much to bare. These folks will become your sisters and brothers and will understand much more than others about why you hurt, the brain fog, the aches and pains you can't seem to describe - but bother you day in and day out.

    You will be in my prayers and I hope you will be diligent about keeping notes, it's easy to let up after awhile - but it will pay off for you when the time comes for you to see your doctor. Take very good care of yourself and get lots and lots of rest.

    Much love,
    Browneyedgirl
    "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown

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