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  1. #76
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    Feb 2016
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    You are barking mad

    On a good note, your mange may have cleared up.

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  3. #77
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    Feb 2006
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    Quote Originally Posted by woodPixel View Post
    You are barking mad

    On a good note, your mange may have cleared up.
    No evidence of a tail - yet either.

  4. #78
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    Feb 2006
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    Perth
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    Quote Originally Posted by ian View Post
    sounds more like a story you would tell about your mum
    Yep

    BTW. It must be coming up to 3 months now. how is she getting along in her new home?
    Mostly good.
    At least one of us visit her every day and mum seems a bit more cheerful every time we visit but seems to find a new ache or pain or bowel movement issue to grizzle about every time. Not too bad though. I usually bring my grandson along which she really enjoys.
    Mum tends to stay in her room a lot so we try to get her out of her room and one of my sisters takes her off for coffee away from the care centre.
    Another sister takes her for a slow walk around the centre
    Mum's frugality sees going for coffee as a huge waste of money and sometimes says so but that sister has worked in aged care and is really good at handling mum.
    Mum goes for lunch with 4 of my sisters once a week which gets her out of the place or a regular basis.

    I guess over all its better than we hoped it would be.

  5. #79
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    May 2013
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    Rockhampton QLD
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    That’s great news about your mum Bob.

  6. #80
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    Feb 2006
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    Perth
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    Up until recently, apart from feeling a bit tired and addressing that with an arvo snooze the sarcoidosis hasn't really affected what I wanted to do - well that's not quite correct - I have wanted to exercise more but just felt too tired.

    The last 3 weeks has been dominated by a painful right knee. Initial diagnosis by the GP was bursitis - go home and rest it. I'm currently already on cortisone for the sarcoidosis so that should help.

    Two weeks later and there was no improvement - if anything it's got slightly worse with other leg and ankles are being affected so off for a Ultrasound and it turns out it's not bursitis, there's general inflammation and a small amount of water on the knee but not enough to warrant draining it. Doc order rest, so now its a week and if anything it's worse still.

    I rest for a couple of hours so the pain is down to a dull ache but then I can't walk without pain for more than about 20 metres or stand for more than about 10 minutes. Stairs (there are 5 between two halves of the house) are done one at a time using the left leg as the bent leg. Sitting with my leg straight out in front of me is better for about 30 minutes but eventually that also becomes too much and I'm forced to lay down and even there it's painful. Hot and cold packs only provide temporary relief and pain killers help a bit but I shouldn't be taking too many as I am already on cortisone and my kidney is not working right anyway so every time I use a pain killer is knocks the kidney around a bit more.

    Dr google says sarcoidosis can cause joint pain and can exacerbate existing and new joint issues - I'm seeing the specialist on Thursday and will bring it up with him.

    Shed work has slowed to a crawl and it's starting to get into my head . . . . . . . . . .

    Today I'm going to start a few sitting down type projects to reduce the standing up.

    RE: Mum
    Last week was not that good. Mum has been in a very bad mood and keeps saying she wants to go home. Then it turns out she's also obsessed/worried about an upcoming grandchild's wedding in another state. When is it again? How's she getting there? What is she going to get as a present? What will she wear? Is it at night? because she can't go out at night etc.

    There are several family weddings in the next few months. The wedding mum is worried about is 3 months away and there was never any suggestion that mum would go, my niece just gave mum an invitation like she did to all the relatives. It seems that has started to mum fixates on something she has no control over and over worries herself about it. Another example of this is a low dose pain killer patch that the doctor put on mums back to reduce the number of pills that mum takes. Mum can't keep track of the meds she takes and even when she takes just one, 5 minutes late she thinks she has taken a dozen, and so just doesn't understand why they applied the patch. It's so sad but we are going to have to be more and more very selective about what we tell her.

  7. #81
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    Feb 2006
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    Perth
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    Back at the specialist today.

    Latest scans and blood test are mostly good - Sarcoidosis activity is down enough to go off cortisone pills YAY

    Ca is still up - probably unrelated to sarcoidosis so, . . .

    3 different blood tests, one of these is going to be every two weeks of 6 weeks and a bone scan.

    Blood sugar is up - probably due to cortisone so hopefully BS will improve not that I am going off the cortisone.

    The worst thing to day was going to the specialist where I could not park in a close by car park and had to park further away and walk about 250m and now my leg/knee is really sore.

    Then when I went to have the blood tests I walked about 100m and then it turned out I could not have one of the tests at that Blood collection centre so I have to go to another one tomorrow.

  8. #82
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    Feb 2003
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    back in Alberta for a while
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    Quote Originally Posted by BobL View Post
    Back at the specialist today.

    The worst thing to day was going to the specialist where I could not park in a close by car park and had to park further away and walk about 250m and now my leg/knee is really sore.

    Then when I went to have the blood tests I walked about 100m and then it turned out I could not have one of the tests at that Blood collection centre so I have to go to another one tomorrow.
    go see you normal GP and see if you can get a temporary wheel chair sticker
    regards from Alberta, Canada

    ian

  9. #83
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    Dec 2011
    Location
    SC, USA
    Posts
    598

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    Any chance the knee issue is arthritis and that a glucosamine chondroitin supplement may take the edge off enough to make it managable?

    Another item worth consideration....

    When you need to go in for multiple items or multiple blood tests - call ahead and find out:
    1. which facility handles all of the the specific tests you need.
    2. Make them schedule all the similar tests all at once.
    3. Make sure the doctor or relevant specialist will accept the tests performed by prior labs and doctors...
    4. You will probably find it useful to hand carry copies of your charts, test results, etc from each place - as often they don't share with eachother even though they are supposed to....

    Often you will have to be quite forceful - as 3 different doctors will all run EXACTLY the same test on you - getting exactly the same results.... Or they will send you to 15 different labs to get blood draws when it could all be done at one... Or the lab that can do them all on Tuesday can only do 1 test on Wednesday... Or they will have you scheduled to drive 150km each way for tests for 8 consecutive days - each in a different office of the same hospital when they could do them all on the same day if they would coordinate them all... And half the tests are dumb stuff that you could just do yourself and call them - like coming into the office for a finger stick blood sugar and another office visit for a simple vitals check.... And it is a massive inconvenience and massive cost - with ZERO benefit to you... But they benefit because they can then bill for the tests, the 50 extra office visits, etc...

    All the while stressing your body out and making you more and more sick and more crotchety - simply because of the stress, poking and prodding, needles and biopsies, exposure to more sick bays, travel, and being away from people you love and doing things you love... Etc.

  10. #84
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    Feb 2006
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    Perth
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    Quote Originally Posted by truckjohn View Post
    Any chance the knee issue is arthritis and that a glucosamine chondroitin supplement may take the edge off enough to make it managable?
    I hope so.

    Another item worth consideration....

    When you need to go in for multiple items or multiple blood tests - call ahead and find out:
    1. which facility handles all of the the specific tests you need.
    2. Make them schedule all the similar tests all at once.
    3. Make sure the doctor or relevant specialist will accept the tests performed by prior labs and doctors...
    4. You will probably find it useful to hand carry copies of your charts, test results, etc from each place - as often they don't share with eachother even though they are supposed to....
    [/QUOTE]

    Good advice John,

  11. #85
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    Feb 2006
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    Perth
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    Well had all the tests and the bone and CT scans and Finally got some results back.

    Blood test show nothing - just high Ca levels.

    Bone scan and CT scans shows severe synovitis of the right knee , inflammation of the joint lining which can be treated by a cortisone injection.
    Seeing Doc about it tomorrow.

    At least its nothing too serious.

    Just to make things a bit more comfortable I now have the flu so along with the usual aches and pains it brings the right knee is even more painful.

  12. #86
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    May 2013
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    Rockhampton QLD
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    Hang in there Bob. All the best.


    Ross

  13. #87
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    Feb 2006
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    Perth
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    It's now a week and and a half after the knee injection and there seems to be a small improvement as long as I rest it.

    The good news is after a series of fortnightly blood tests Ca levels have stabilised at or near the acceptable high level. Doc thinks I must just have higher than average Ca levels.

    Sarcoidosis is still down from "moderately active" (which required me to take cortisone ) to "low activity" so off the cortisone and back to 3 monthly blood tests.

    Morning blood sugars around low 6's which is down from 7's and 8's when on cortisone.

    Flu and cough is receding but I'm still weak and can't do too much anyway because of knee.

    Back to the knee. If I rest (ie do nothing) for a half day the pain is definitely less for longer afterwards. Sleep is even better than usual - I only got up 3 times last night. I can go upstairs using alternate legs but not downstairs where I have to lead with the right leg. Overall I'd say there's a small improvement but I also now know when to stop and rest better than have been doing.
    Doc thinks it might be gout so had a uric acid blood test this morning. It's unlikely as you usually get it in toes or fingers first.

    Not doing anything in the shed yet. Bit of electronics futzing and circuit testing is about all I can do project wise. I'm onto my 80th audio book and 6th paper/ebook for the year. Biographies of Monash and Chauvel - highly recommended. Currently in the middle of the Biography of the real George Smiley (John Bingham) a Brit WWII "operative" also really good so far.

  14. #88
    Join Date
    Jun 2000
    Location
    Western Australia
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    77
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    3,679

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    Bob , not saying that the time out of an engaging shed is unfulfilling, rather that the time spent otherwise can be also be productive in other matters such as your endeavours with your writing.
    I personally find as the aches & pains of an aging existence accelerates, life therefore promotes more passive adventures which can still be shed bound of course many of which can have appeal.
    Johnno

    Everyone has a photographic memory, some just don't have film.

  15. #89
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    Feb 2016
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    Canberra
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    You could take up marquetry. I sit for hours and hours doing this. Nicely relaxing and not stressing on the knees

  16. #90
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    Feb 2006
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    Perth
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    Flu symptoms are gone - I think it's because the dickey knee forced me to rest more than I otherwise would. Last year teh flu seemed to take months to clear as I was not resting.

    More blood tests and a visit to the kidney specialist.
    Lost 10kg since my last visit 9 months ago with basically ZERO exercise since April because of the knee.
    The specialist was well pleased with the weight loss.
    Most likely cause is the new pill called Jardiance that I have been on since Feb - it makes you pee sugar.

    Small improvements all along the line with the kidney functions, best being the large reduction in protein leakage (although its still too high, as is the cretanin).

    Had another Cortisone shot in the knee last Wednesday. Pain minimal again for 2 days back came back strongly yesterday so I took one of the new pain killers prescribed by the GP. This is the first pain killer that seems to have worked - Walked a km with the dogs, did the grocery shopping and visited the kidney special with minimal pain - starting to get a bit sore now 24 hours on. Downer is that the new painkiller is not good for kidneys so I should only take them as sparingly as possible. Seeing a Ortho specialist next week.

    Bad new is the Kidney specialist is retiring - pity because he was he didn't promise any magic and always called it like it was. Have been recommended someone who is both a kidney and auto-immune specialist which will suit the Sarcoidosis.

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