posted
from BBS....i got this the night the lymenet server was hit by lightning! so couldn't post until now...BG
If people ask about me, please tell them that I am hanging in there, had a good experience with the LLMD. I am awaiting treatment, because they are findout out that there is alot more going on with me, that needs to be treated first, or along with co-infections. I go back really soon and treatment should be starting at that point.
Mainly laying in bed with my dog, reading, watching DVDs, listening to music, and more rest. I play guitar when I can and do some art stuff and knitting when I am up to it as well.
I am in bed almost ALL day. I get up to go to the bathroom and that is about it. Two days a week I travel, so I am at least in a car and out and about.
I also am still able to get my massage, pilates and guitar lesson. I have to push really hard to do those things, but I know it is really helping me.
They think one of the reasons I am still walking is due to the pilates/massage, and having such a strong support system.
Due to that, I am able to stay in bed and not have to fix myself food, etc. since I get worse whenever I get up and move around.
My days and nights are very much reversed. I sleep better in the day, and tend too not sleep at night. Occasionally I do, but only for a few hours.
Sometimes I have days where I am supposed to get my pilates, but am unable to get up and get there. So we deal with those days when they happen, but I try really hard to get there unless its one of those days where I pass out when I sit up in bed, when I get out of bed, etc. because those really exhaust me to the point I'm unable to stay awake.
This has ended up being mega long, and I had meant it to be a short update.
Something I forget to mention. My Mom has told doctors in the past that she and my dad have to come in to make sure I am still alive.
On the bad days I lay in bed and get massively pale and don't respond. She says they come up and make sure I am still breathing and am okay.
When I told the NP she said, "Thank goodness they are checking! You are really sick and need to be checked on."
It was interesting to hear her say that, after doctors have been told this in the past and said it was ridicolous to check on me.
Those doctors have been fired...wonder why, ha ha.
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posted
Glad you have found a GOOD LLMD! Keep firing the bad ones!!
Keep us posted whenever you're able. We enjoy hearing from you!
HUGS!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
tutu, thanks for your kind remarks; i know BBS will enjoy reading them.
she's been/still going thru pure hell on a large variety of issues. as things eventually settle down, she'll come on and update us all more.
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bettyg
Unregistered
posted
buried again; up we go to be read!
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bettyg
Unregistered
posted
time for weekenders to send BBS get well wishes and missing you on here!
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bettyg
Unregistered
posted
this got buried, and only TUTU replied to this; pretty discouraging folks for someone as sick as BBS!
please take 3-4 minutes to her greetings and sincere wishes for the future.
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
blackbirdsings
Good luck with your LLMD appointments & am hoping & praying you can find some releif soon
hang in there Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Blackbirdsings,
Glad to hear you have a llmd.
also glad to hear that sometimes you can do things you enjoy even though you are going through so much.
Hope your new llmd's treatment brings improvement quickly.
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Miss seeing you online. I hope that you are hanging in there. :-)
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
THANK YOU DANA, AZURE WISH, AND CAN'TGIVEUP for your greetings and well wishes to our dear BBS! I know she will enjoy hearing from each of you.
She's in her young 20s and to be going thru as much as she has this past 1.5 years; reminds me of our dear Kam of the many obstacles she has had to overcome!
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