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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 CFMBabs

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Posted 08 May 2008 - 09:26 AM

Well I finally got hooked up to a portable device, just as cumbersome as my feeding tube, I'm now like a prototype bionic woman before the upgrade with exposed wires.
I don't think they could make me look any sillier! Try discretionary shopping at the local supermarket where none of your friends go because it's too expensive? -- Ugh! I've just had one of those wonderful moments whereby you lose the will to live -- They had a sale on! And don't you know? Every person I've ever met in my long and tainted life was in the que!

"Oh you look well" One said, then glanced me up and down and was just bursting to ask why I was wired up like some laboratory experiment on the loose!

"Not seen you for ages" Said another --- Well dohhh! you don't shop here very often, if ever!

All I needed at that very moment was a Bleep, Bleep! And sure enough it came, and with everyone looking around in my direction, most people around me rummaged in handbags for mobile phones -- well I wasn't going to admit that it was me sounding off was I?

"Let me help you with your tin of cream!" Said another lady who I can't for the life of me remember her name!
It wasn't my cream, rather my husband's, who'd come home from work rather chaffed in a very delicate area.

With my little portable feeding pump reset and my heart monitor with a 24hr pulsating clock, I left the supermarket flummoxed, and totally grateful for my car parked in a disabled bay, that everyone I met in the shop saw me get into! So now I proved that I was in fact ill with some kind of disease that keeps me strapped up to a machine. I could almost guess the conversation after my departure and couldn't help wondering if they thought that if I became disconnected, I would deflate or my heart would stop! I made my getaway rather quickly, which left some elderly disabled folk giving me the "look" Y'know the one where they look totally disbelieving that anyone younger than 80 ought not to have a disability badge! "Roadhog!"

Such is life!

Best wishes
Bionic Barbara xxx

#2 LisaBulman

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Posted 08 May 2008 - 09:50 AM

Hi Barbara,
I am so sorry for your experience but thank you for the laugh! I think you should start making your self beep around others and pretend you don't hear a thing. When they ask what it is just say, "What are you talking about? You should really have your ears checked." Then you'll get the last laugh!

Hugs,
Lisa
Lisa Bulman
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#3 Guest_Sadie_*

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Posted 08 May 2008 - 11:06 AM

I'm so sorry you had to go through that. I had a great laugh. You have a great sense of humor! I love Lisa's idea! That would be so funny!!

Sadie

#4 Snowbird

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Posted 08 May 2008 - 12:33 PM

Barbara & Lisa

You have both given me a laugh too!
Sending good wishes your way!

#5 ShawMJ

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Posted 08 May 2008 - 05:54 PM

Hi Barbs,I'm not glad that you're hooked up to the monitor but it may just tell them what they needd to know.Picture this my 7 year old grandaughter is also wearing a holter monitor as she has been having fast heartbeats,getting clammy skin nausea and almost passing out.Can you imagine the questions she had to answer at school?They ran all kinds of tests on her,blood work,mri and a lot of stuff and nothing came up but the pediatric cardiologist said that wasn't normal what was going on with her.Well found out today they removed the monitor and she now has a 'beeper'that they use,she's had two episodes since having it and still nothing shows up! She'll have that 4 MONTHS! Tonight they're all going to ride the 'kiddie rides 'at a carnival,she and her little best friend.I'm really worried and hope theres nothing wrong,the doctor said it could be anxiety attacks.Well I hope thats all it is as that can be dealt with pretty easily.So just one more worry for me.I'm sorry you had to endure all that but it was FUNNY! Aren't our handicapped slots the best thing?I give dirty looks but its to all the young people who think its okay to park there thinking they will only be in the store 'a little while'.That NEVER happens I always think 'what if it were your loved one needing it?Well anyway I would like to wish all you moms and grandmothers like a happy mothers day Sunday.Also hope all are hanging in there one day we just might have a cure!Love and hugs.Mary-La.

#6 CFMBabs

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Posted 08 May 2008 - 08:48 PM

Well! I'm just about ready to make the journey back to the hospital to have this machine removed.
Ironicaly! my heart has behaved itself impeccably and I've had absolutely no episodes of fluttering or bouncing around my chest in the last 24hrs! --- Amazing isn't it?
I'd lay bets on it misbehaving the minute they take the recorder off! Part of me was hoping something would happen, then maybe I'm thankful that it hasn't, I don't know what to think?

My Rhuematologist will think I'm inventing these episodes but what can you do when you have a pain in the chest, just ignore it?
I thought at first it may have been something to do with my bile duct since I had my gall bladder removed. The pain was very simmilar to gallstones or pancreatitis. So off I went for a test after relaying that information to my doctor. Nothing came back to suggest any involvement with those organs.
She'll think I'm becoming a hypochondriac! I know that I'm not inventing these symptoms --they're 100% genuine, but only I know that!
So frustrating and I guess I'll never find out. I'm sort of ashamed to take this monitor back. I'll have an athletic heartbeat you just see!

Best wishes
Barbara xxx