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SandraC1983
11-20-2008, 12:21 AM
ITS MIDNIGHT ONCE AGAIN..... THE TEMP IS DROPPING OUTSIDE AND I CAN FEEL MY HANDS AND TOES GOING NUMB AGAIN. IM IN THE SPARE BEDROOM CAUSE I KNOW ILL KEEP MY HUSBAND UP . MY NECK HURTS AND MY KNEES ARE CRACKING EVERYTIME I GET UP AND WALK. IM ONLY 25 AND I FEEL LIKE IM 90 YET THERE ARE PROBABLY 90 YR OLD PEOPLE OUT THERE THAT FEEL BETTER THAN I DO. THE STRANGEST THING HAPPENED TO ME A COUPLE OF HOURS AGO WHEN MY HUSBAND GOT HOME . I WAS TELLING HIM SOMETHING ABOUT THANKSGIVING WALKED BACK INTO THE KITCHEN AND LOOKED AROUND AND FELT CONFUSED. I WENT BACK TO TALK TO HIM AND FOUND MYSELF REPEATING THE SAME THING TO HIM . HE TOLD ME WE JUST TALKED ABOUT THAT AND I DENIED IT. CAUSE I DIDN'T REMEMBER! I FEEL WORSE NOW SINCE I HAVE BEEN TAKEN OFF MY PLAQUENIL IT'S BEEN A WEEK AND A HALF. IM SEEING MY PCP TODAY BUT I DON'T KNOW IF SHE WILL BE ABLE TO TREAT ME FOR MY LUPUS. MY RHEUMY TOLD ME TO WAIT IT OUT MY NEXT APPT WITH HIM ISN'T UNTIL JANUARY 08,09 AND HE WANTS ME TO REDO MY LABS TWO WEEKS BEFORE MY APPOINTMENT. THAT SOUNDS CONFUSING TO ME WHY WOULD HE WAIT SO LONG , BUT IM NOT I NEED DIFFERENT OPTIONS MAYBE DIFFERENT MEDS SOMETHING CAUSE I DONT KNOW HOW MUCH MORE I CAN TAKE OF FEELING LIKE CACA. "SIGH" EVERYTHING IS SO OVERWHELMING MY DEPRESSION MY PAIN NO SLEEP. JUST VENTING


JUST BREATHE SANDRA JUST BREATHE

:cry: :mad: :?

Larz77
11-20-2008, 01:03 AM
It would seem to me that being on plaquenil is reasonable. Did they take you off because of your eyes? Other than that, I can't imagine why they would rock that boat. My "Rheumo" seems to think that it's the wonder drug for Lupus...sigh.

I'm in the same boat as you. I have an appointment with my PCP on Monday, but not with my Rheumo until end of January. I have standing orders that I am suppose to repeat every 6 weeks I think...I am think that it would seem reasonable to ask to repeat them every 3-4 weeks if I believe I'm in a flare.

Anyway, I know how going to the doctor is a mixed bag of hope when you go that something might be done, and dispair when you leave with nothing accomplished. Keep strong and if I were you, start looking for a new Rheumo.

Larry

SandraC1983
11-20-2008, 01:13 AM
He never really gave me a real reason just told me that he was taking me off of it once i mentioned vertigo loss of hair no sleep and numbness in my hands and feet. Oh and my eyes......... he said he was going to call my pcp that same day so she can run some test the following day........ well i had to finally call crying and all to get an appointment plus i was mad as hell when i spoke with my dr's nurse but i feel wose now that im off of it

Larz77
11-20-2008, 04:40 AM
I would say that most of your symptoms are lupus related. The eyes is the reason I would think they would make this decision. Plaquenil can cause retinal damage in some people I guess. If they stop it early enough, it can reverse. I'm guesssing that is the only reason for the abrupt stoppage. But I would think running you to an eye doctor would make more sense to confirm.

Good luck today. Let us know what happens,

Larry

hatlady
11-20-2008, 06:37 AM
Gentle hugs to you Sandra,

I don't have a chance to be on the board very often, but I've had a few minutes this morning and have had the chance to read some of your posts. I wish I could reach out and hug you - let you know that things will turn out OK. The others have responded so beautifully and eloquently, I'm afraid I'm not so gifted a writer. But I can tell you honestly that we care.

All of us on this board care for each other and support each other - what hurts one of us hurts all. We do understand the pain and the issues, and we do listen.

Please, at some point today if you can, step outside into the clear air of New Mexico (wear a hat, wear long sleeves, wear sunscreen!!!) and take a deep breath. Smile and say out loud - "I am here. I am loved. I have friends who care for me. I will find peace in this moment." Take another deep breath and experience a moment of peace in your heart.

Many many gentle hugs, dear.

SandraC1983
11-20-2008, 10:46 AM
going to the DR at 1:45 i will let you all know how it goes.

KathyW1958
11-20-2008, 11:49 AM
Hi Sandra and I am glad that you are seeing the doctor today and please do let us know how it goes.

Hugs,
Kathy

SandraC1983
11-20-2008, 04:28 PM
THANK YOU KATHY IM GLAD THAT YOU ALL ARE AT MYSIDE DURING THIS HARD TIME OF MINE AND HOPEFULLY I WILL START FEELING BETTER . ONCE AGAIN THANK YOU


HUGS AND KISSES.
SANDRA

KathyW1958
11-20-2008, 05:18 PM
Hi Sandra,
If there is any way that I can help I will. I understand how horrible this illness is big time. I hope that you get to feeling better and all.

HUGS,
Kathy

sick n tired
11-20-2008, 09:51 PM
Hey Sandra,

It is almost midnight and I was hoping that the docs appt went well and you are sleeping like a baby. I think that you did say on another forum that you are on new meds, so hopefully it is working.

Well have a great night sleep...for me...I believe that I am in for a long haul tonight...sigh

SandraC1983
11-20-2008, 10:03 PM
IM STILL UP MY HUSBAND IS NOT HOME YET FROM WORK HE IS ON CALL THIS WEEK AND.........IM HOME ALONE! MY MOMMY HAS MY LITTLE ONES AND IM BORED WHAT TO DO. WISH IT WAS SUMMER TIME I WOULD BE IN THE POOL RIGHT THIS MINUTE. AND WHY ARE YOU IN FOR A LONG HAUL YOU FEELING SICKY........

sick n tired
11-20-2008, 10:20 PM
I am really nauseated...actually my tummy is burning...I hurt too, but that is usual. Actually, I don't know but the colder it gets the worse the pain is becoming. We have the heater on, but the wind feels like it is coming through the window panes.

SandraC1983
11-21-2008, 12:17 AM
I FEEL U ON THAT ONE MY HUSBAND GOT HOME AND TOLD ME IT WAS TO HOT AND TURNED THE HEATER DOWN NOW IM FREEZING IT 19 WITH THE WINDCHILL AND U CAN FEEL THE WIND COMING FROM UNDERNEATH THE DOORS IM LAYING IN BED MESSAGING FROM MY PHONE CAUSE IM TO COLD TO GET UP PLUS MY KNEES ARE HURTING AND I SLEPT AN HOUR AND IM WIDE AWAKE FEELS LIKE I SLEPT 12 HOURS NOW WHAT DO I DO AND WHAT MAKES THINGS WORSE IS THAT MY JAW HURTS FROM GETTING MY TEETH PULLED SIGH THIS SUCKS

mnjodette
11-25-2008, 05:48 AM
Sandra, I feel your pain - and your cold! Hang in there - and keep pressing your doctors for some relief. Do stay warm - electric blankets, down comforters, mittens and socks in bed - whatever it takes. It hurts to be cold, I know. (I live in Minnesota, too.) Sipping hot liquids helps warm you from the inside out. Glad you found this site - hope your find some support here.

Jody