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Thread: OT May Chit Chat

  1. #141
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    I liked and like the visual display of maypole dancing, and its history.

    But as a kid, I found it boring to do. Much rathered hit balls and running bases in the street or climbing trees in the woods etc....

    IVIG All Day Long today. Hope to get a nice boost from it.
    I have been doing infusions at a cancer center for 20 years. It is 20 minutes from my home. All my medical connections are connected to the same area so it is a blessing.

    Yesterday I got a phone call that all non cancer infusions were being shifted to the main hospital. Boom. Just like that. The hospital is right near the infusion center so it adds only 5 minutes to the drive. But, parking will be problematic.

    Really it feels like a loss. I have known the nurses who infused me for 20 years...they know my history...I have followed their pregnancies and their children growing. And just a phone call from a secretary telling me to go someplace else.. I am so weary of changes, losses, being invisible....there was just something wrong with the way this was done. All the friends I have made at the place I did go...now, I will not know what happened to everyone.

    Just complaining. But there should have been more sensitivity to cutting people off from their connections.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  3. #142
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    I understand Linda. I can't even remember how many times my PCP has changed in the last years. I had one for 25 years at one time, now I am lucky if they last two before moving on. My Neuro - I had for over 20 years and adored him. He was changed through no fault of his own. Like you, I am very tired of being moved around, shoved around, forgotten and overlooked. When I did not need them so much it was not this way. Now I need them a little more and it's always like this.

    I am sorry this is happening to you because I know it makes you feel like you are losing friends and that you do not count. I feel it every time I think I am settled in and it happens again.
    Virginia

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  5. #143
    Distinguished Community Member Lazarus's Avatar
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    Thanks Virginia.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  7. #144
    Distinguished Community Member agate's Avatar
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    That is so true--about being tired of being bounced around as doctors and other medical providers keep moving on.

    Linda, is it possible that some of the staff people you know will move to the new location?

    One of the things I dreaded most about moving to a different state was having to change all medical providers. But I did that and got used to going to the same primary care doc, the same neuro, same eye doctor, same foot doctor, same audiologist, same dentist. After nearly 10 years the only one who has stayed the same is the eye doctor, and I keep hoping he won't retire.

    The neuro has changed twice, the foot doctor once, the audiologist 4 times, and the dentist once--and the PCP has changed twice. These were all necessary changes (they left) except for the audiologist. I changed them because getting to/from each one was just too difficult. I've also been to 3 different PT places but that was necessary because I had to go with whatever one the doctor would refer me to. The last one I went to was so good that I asked to return to them later on, and that wish was granted. I'd ask for them again when/if I have to go back. In fact, they told me to return now and then, and I'm definitely going to do that.

    I feel more at ease if I'm being treated by someone who knows me somewhat and remembers me from previous visits. It's a friendlier atmosphere. Going to most medical appointments can be moderately stressful, and it's hard getting used to new surroundings. When your eyesight and hearing aren't so good and you have trouble speaking, new surroundings are a challenge, to put it mildly.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  9. #145
    Distinguished Community Member SuzE-Q's Avatar
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    I understand the loss, Linda. It is a valuable, ongoing social connection when you've spent dozens of hours a month there and you've come to know and interact with staff and patients about your unfolding lives, your ups and your downs. They are your friends, too.

    It's a real loss of part of your support network. And what a sudden, cold and abrupt end to it too.

    I'm very sorry.
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  11. #146
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by SuzE-Q View Post
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    I understand the loss, Linda. It is a valuable, ongoing social connection when you've spent dozens of hours a month there and you've come to know and interact with staff and patients about your unfolding lives, your ups and your downs. They are your friends, too.

    It's a real loss of part of your support network. And what a sudden, cold and abrupt end to it too.

    I'm very sorry.
    Thanks Agate. You are exactly right...it was sudden, abrupt and cold. I will take a ride there to locate the parking and where it is within the hospital campus.it will be a whole new set of nurses. My oncologist stays the same but he stays in the original building.

    I’ll get over it but it feels lousy now.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  13. #147
    Distinguished Community Member Sunshine's Avatar
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    Linda,
    Once an inequity happed to me in the IVIG center. I compallainded to the head admin of that service which i recall was in the Cancer service.
    She made immediate changes.
    How could they possibly know the social and medical impact on a patient with such a shift of care? You must be the messenger and let her know kindly but assertively.

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  15. #148
    Distinguished Community Member Sunshine's Avatar
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    As I left the IVIG building, I had a terrific ankle twist spasm. Even though had Ativan at 1:30 pm that day for the IVIG, and had it also at 8am. It settled down in a few minutes. Got into car with DH and it greatly worsened. Did Rectal Valium gel and it stopped it.

    Then, this morning,had a bad spasm at @2am, unable to walk. settled down in 5 minutes. Then at 5 am very aggressive left leg spasm: unable to walk...Took Ativan. It worked in 20 minutes.

    I have put email out to doc about this morning. Had already told him about yesterday. I am thinking it was payback for forgetting my 2:30am 30mg Baclofen dose early yesterday morning...still could be...Yestrday before these crippling spasms, He Had told me to stay the course, and not take the missed dose...

    Scared. No drive today, no swim today, just lay low until I have a path. He gets back pretty fast to me.

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  17. #149
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    Sunshine, I hope this is the end of the rogue spasms. That must be frightening besides painful.

    Linda, I bonded strongly with my hospital nurses as the worked 12 hour shifts. I can’t imagine them being yanked away. I felt safe there.

    ANN
    There comes a time when silence is betrayal.- MLK

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  19. #150
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    Sunshine, I just told Jeanie last evening how well you were doing the past couple of days. Sorry to hear this. I will stop telling her since I may be jinxing you.

    I have two days a week that I take an extra 25mcg of thyroid medication. I do that on Wednesday and Saturday. Last night I realized I was feeling even more blah than usual. Today I found that I skipped all of yesterdays thyroid medicine. It was too late today to take any extra by the time I found out. I still do feel rather like I am dragging. Maybe I will get over it in another few days. I hate it when I do that.

    Where's Howie?
    Virginia

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