BIG SURPRISE AT THE DOCTOR...
December 9, 2008 2:26pm
WELL I GOT A SURPRISE AT THE DRS TODAY....WHEN I GOT THERE AND HAD TO GO OVER MY MEDS WITH THE NURSE AND HAD TO TELL HER I STOPPED THEM,I THOUGHT SHE …
Progress
25 %
Helyn’s Profile
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About Me
I am a nanny.I have severe sle lupus w/ multiple organ failure.They tell me its end stage, what do they know. I am the mother of 3 children.2 boys 25, and 23.a 16 yr old girl.married for 12 yrs.to a wonderful kind man, , grandmother of 2, 8 yr old boy, newborn girl.I also have cushings, addisons , 2pituitary tumors, a pituatary leason, hasimotos, liver failure, heart failure, atrophied rt kidney, vasculitis, and rsd[reflex sympathic distrophy]rt hand. so far thats all thats wrong with me.p.s forgot also have hemaphilia [factor 8 defiency] i know girls arent supposed get it but i am here as proof they can. when i was diagnosed in 68 i was only the 6th girl known in the u.s. my dad[birth father]and son also have it.
Interests
I love to engrave in granite.I used to have my own business doing pet grave markers, address markers, even a few human.I even engraved my own but that seems to be at an end, . the dust they tell me can cause lupus and flares.so now I will only do it for friends and family. God, I miss making a difference.I used to love to go dancing with my friends, but that to has ended.the body wont cooperate. still havent found anything to replace my former life. but, I am sure one day I will.I do love to garden, except now a days my gardens look like a mini jungle. love dogs and cats have 6 dogs 1 cat.
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Recent Activity
Today
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Helyn gave BeautifulDreamer a hug 5:38pm
HE WOMAN!! DID YOU MAKE YOUR IV APPOINTMENT? FLY OR DRIVE??? HOPE ALL WENT WELL FOR YOU TODAY!!! LOVE…
Yesterday
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Helyn gave BeautifulDreamer a hug 10:27pm
HI GIRLFRIEND!!!! I GOT GOOD NEWS!!! THE KIDS ARE WITH THE MOMMA!!!! WOO HOO... I AM HEADING TO BED ..BEEN…
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Helyn commented on reddutchgirl’s photo/video 5:46pm
NOTHIN SWEETER IN THE WORLD THAN A BOY AND HIS DOG!!!…
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Helyn commented on reddutchgirl’s photo/video 5:45pm
VESTA IS A VERY PRETTY GIRL!!! TRISTAN LOOKS LIKE HE WANTS TO GIVE HER A BOP ON THE NOGGIN!!! HAHAHA!…
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Helyn commented on reddutchgirl’s photo/video 5:42pm
TOOO CUTE!!…
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Journal
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Journal Entry for November 29, 2008
November 29, 2008 10:10am
HI EVERYONE...
HOPE YOU ALL HAD GREAT THANKSGIVING... I DID
I ENDED UP WITH 15 PEOPLE HERE FOR DINNER... IT WAS NICE TO SPEND SOME TIME …
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NEWS ON ALEXX...
November 19, 2008 6:08pm
WELL ...HE IS NOT READY TO SAY ABSOLUTLEY CUSHINGS...MORE TESTS TO GO THRU...ANOTHER SURPRESSION TEST, ANOTHER 24 HR CORTISOL,SALIVARY …
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HERE I GO AGAIN...
November 19, 2008 8:45am
HERE I GO AGAIN WITH THE PERICARDITIS!!! I AM SO DAMN TIRED OF IT!!!! I CAUGHT A LITTLE COLD THIS TIME NOTHING LIKE THE ONES I USUALLY GET ...THIS …
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MADE IT THRU THE WEEK..
November 15, 2008 11:25am
I GUESS I WILL START WITH MONDAY..
I CALLED ALEXXS SCHOOL AS SOON AS THEY OPENED ABOUT RITCHIE HITTING HER AGAIN ON FRIDAY.WAS TOLD MRS RHOTEN WOULD …
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Hugbook
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Hug
No, It was so bad here today that THEY called ME and canceled! It has not stopped snowing since yesterday! I'm snow -weary. I rescheduled my appt. tomorrow too.For next Tues. If it snows then, I'll reschedule again. I hate winter! Did you get some rest last night? Are you off now till Monday? I hope so! You need a break! :) Cheryl
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Hug
I enjoyed our talk also. I told the hubbie how long we talked and he laughed and wanted to know when we were driving to PA. I guess that we are exhausted at the same time. Not much sleep last night as my son decided that he didn't need any. Shoot my eyes aren't even fully open yet and I'm actually drinking a cup of coffee. Hope you get lots of rest!!!
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Hug
Oh! Just read the good news! Yay! You get your life back! Now you can spend time with them like your supposed to- they spend the night at grandma's and then go HOME! Yipee! Get a good night's rest now~!! :) Cheryl
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I’m With You
You make me laugh out loud woman! I really AM quite a mess these days. I hope it's over with soon! Help! I wrote a note to myself to ask my doc on Monday about liver function tests. It has been over a year (Nov '07) since I have had that checked. With all the meds I'm on.........Thanks for the suggestion-the worst he can say is no. You are too funny.... Ride my broom to the IV appt....... LOL ....... :) Cheryl
Hug
Hello my lil cupcake!!! Hope you didn't work hard today. Wanted to drop in to give you a TICKLE!!! XOXO
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Photos
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Goals
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Support Groups
Close Lupus
diagnosed march 07 with sever sle lupus with multiple organ failure.3 pituatary tumors, constrictive pericarditis.pericardectomy in july 07.in liver failure kidney failure.adrenal insuffient. hasimotos,rsd,generally i seem to be a wreck.
Treatments
- Plaquenil Working / Worked
- helping no side effects
Close Reflex Sympathetic Dystrophy
I WAS DIAGNOSED IN FEB 08...I ALSO HAVE SEVERE SLE LUPUS WIH MULTIPLE ORGAN FAILURES...THE RSD IS IN MY RIGHT HAND AND SO FAR HAS NOT SPREAD..I HAVE SEEN THE PAIN MANAGEMENT DR FOR THE NERVE BLOCK AND MEDICATION FOR PAIN BUT CHICKENED OUT AFTER MY CHIRO STARTED DOING INFRA RED THERMAL LASER TREATMENTS[THATS WHAT HE CALLS IT, I AM NOT SURE ITS TRULY A LASER...] HE ALSO DOES ULTRA SOUND 3X A WEEK..SO FAR THE HAND IS NO LONGER PURPLE IN COLOR AND ITS NOT AS COLD AS IT WAS...
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Snapshot
Recently …
- 26 hugs given
- 31 hugs received
- 1 photo upload
- 1 discussion reply
- 1 advice reply
- 7 group discusson replies
- 5 journal comments
- 6 photo comments
