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Thread: It kicked my butt.

  1. #1
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    Default It kicked my butt.

    Last weekend I went sailing for 3 days. Did I cover up? You bet I did see new photo in my album. All this past week I've been totally exhausted like I have never been before. I spent 99% of the time out of the sun. Well yesterday I need to go to the marina for a couple of hours. I had on all my protective cloths and sunscreen.

    After Lisa and I left the marina we went to the every Saturday night dinner with our marina mates. I sat there freezing and the temp was 68. Got home an all night I had night sweats.

    Well Thursday I have an appointment at the VA with the dermatologist and rheumotoligist (sp) and more lab work. This will be the first time to see the rheumy since I was told I had Lupus. Lisa and I have a question list for them.

    I'm learning how this stuff can kick my butt.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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    hi david,

    tell lisa hello for me...i am so glad you have her.

    i know what you mean....i have always been "over active" and now, i never know when i will find myself struggling just to get back in bed.

    i love to camp, but can't even imagine trying it because i am afraid that setting up camp will put me in my sleeping bag for days...and that would not be fun. ha ha ha

    i so hope your dr. appt. goes well. let's keep our fingers crossed for a dr. that truly cares, and will stay with you through this tough walk.
    Phyllis

    share a smile today

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    Hi David;

    Oh that "balance" is so hard to figure out. Mainly because the fulcrum (isn't that the thing-ee in the middle that holds up the teeter-totter?) keeps moving. I often find myself knocked out because I forgot and just DID for too long.

    Hope you get back on your feet quickly - and that you learn to sail relaxing with the wind.

    Keep up that list for the doc - I usually make 2 cc's - one to give to her, one to keep for myself. Helps me be SURE I get through all the questions...
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

  4. #4
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    Phyllis I'll tell her when she wakes up for her nap. The one that I should be taking.

    VA is socialized medicine and you don't always see the same doctor. My dermatologist is great. She really cares and has made it a point that I see her. My plan is to talk the the VA advocate to make sure that I always see the same doctor. Seeing a bunch of different doctors is a nightmare. They each think they have the cure and not the experience to deal with you.

    Right now the limpnote (sp) in my neck is about the size of a chicken egg and very tender. Something I need to put on the list.

    I've got to get back to the boat today an get some cleaning done. My family made a mess of her and you don't leave a lady dirty.

    I get to be home alone tonight. Lisa is going to a slumber party with the girls from the marina. This will be great for her. All the stress with me put her to the emergency room Thursday night. She'll relax have a few to many margaritas to drink and have a blast. All the gals are in their late 40's and early 50'. They'll end up acting like grade school girls.

    Have a great week all.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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    Default hi

    Oh David ive not seen you for a while. Hope you feel better soon n your appointment goes well. Gentle hugs to you n Lisa.

    Love
    Angel.xxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

  6. #6
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    Hi David...

    Be sure and take it easy while doing your boat cleaning duties...don't overdo it. Give yourself some extra time so you don't push it. Lupus just waits for another chance to knock us to the floor.

    I hope your appointment goes well this week...sure hope the Patient Advocate can assist you in getting a little better continuity of care, at least with a Rheumotologist. Let us know how it goes.

    And lastly, I hope Lisa had a wonderful time at the Slumber Party. What a fun night for the girls and a chance for Lisa to let go of some of the worry and anxiety that goes with this rotten disease. Our significant others need a break from the Lupus too, especially if they want to be on their toes and have the energy to come back and deal with the muck.

    Hugs to you both,

    Lori

    p.s. Thought of you yesterday when I heard one of my fav sailing songs "Southern Cross", by Crosby, Stills and Nash...

  7. #7
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    How are you feeling today David? I tend to over-extend myself too, and end up paying for it. it happens to all of us sooner or later. Hope you are taking it easy, and having a better day today.

    Rob

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    I think I'm feeling better today. Yesterday took another toll. I took it easy an cleaned the cockpit. After that I told Lisa I was going to the truck to get a drink. I just sat in the truck not able to get the energy to move. She got worried an came up to see what was going on. After that I just watched her clean the cabin. That's my job not her's. She takes care of the bus and I take care of the boat.

    I dropped her off at the slumber party and headed home. The 26 mile drive home I was not sure if I would make it. Got home fixed me a pot pie and went to bed. I didn't sleep very good with the night sweats. I never stay in bed 12 hours.

    I feel so darn useless. I'm going to get my head around this Lupus and kick it in its butt. I am not going to let it get the best of me. I've always been a hard core fighter and survivor and I'm going to fight back.

    I sure hope everyone has a wonderful week.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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    hi grime,

    so hope you are having a good monday. i too get so frustrated when i feel like lupus is kicking me around. it is very difficult to sit and watch others do for you what you should be able to do. just remember, some days you will be able to do as before, and some days you have to let others help. my girls tell me that it makes them feel useful when they help. normally they feel so helpless when it comes to my health, and helping me makes them feel like they are contributing. don't know about this, but it is what i tell myself when i start to get down about feeling useless myself.

    hope lisa had a great time at her slumber/margarita party....sounds absolutely marvelous...so glad she has an outlet, i know she is worried about you.

    have a good week.
    Phyllis

    share a smile today

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    Those night sweats are the pits. I stayed in the sun too long this weekend barbequeing and had the night sweats too. They are so uncomfortable, aren't they?

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