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cookiecrumbler2005
12-15-2005, 03:41 AM
HI MY MOM WAS JUST TOLD LAST NIGHT DEC 13 THAT SHE HAS LUPUS SHE HAS BEEN FIGHTING WITH CHEST PAINS CAUGHING TILL SHE GETS SICK AND TO GET OXYGEN BASICALLY SHE HAS EVERY SIGN OF LUPUS EXPECT THE KIDNEYS AND HAIR LOSS I WAS WOUNDERING IF THERE ARE OTHER LADIES THAT HAVE MOST OF THE SYMPTOMS AND WHAT HAS BEEN DONE FOR YOU? MY MOM HAS A BLOCKED ARTIERY,HIGH BLOOD PREASURE SWALLEN FEET AND FINGURES SHE ALSO HAS NO STRENTH IN THE HAND AS WELL AS NUMNESS.IM SO WORRIED ABOUT HER BECAUSE EVERYTHING I READ PPL USUALLY HAVE ONE OR TWO SYMPTOMS NOT ALOT OF THEM SHE LOOKS VERY SICK AND TIRED ALL THE TIME AND WHEN I LOOK AT HER SHE LOOKS LIKE SHE IS DYING AND THAT SCARES ME TO DEATH SO ANY ADVICE THAT ANYONE MAY HAVE WOULD BE GREAT HELP

Cafrin
12-15-2005, 03:05 PM
HI COOKIE C.
I HAVE LIVED WITH LUPUS SINCE 1981. WHEN FIRST DIAGNOSED THE LIFE EXPECTANCY WAS 5 YEARS, BUT HERE I AM TODAY. MOST OF MY SYMPTOMS IN THE BEGINING WERE CHEST OR PLEURITIC PAIN. HURTS LIKE THE DEVIL...YOUR MOM MUST GET THE PAIN UNDER CONTROL SO SHE DOESN'T SPLINT WHEN SHE BREATHES. SPLINTING CAUSES MORE PROBLEMS LIKE FLUID ON THE LUNGS. UP UNTIL 6 MONTHS AGO I WORKED FULL TIME AS A NURSE ON A PALLIATIVE UNIT. I AM IN A FLARE UP NOW BUT I KNOW THIS WILL PASS. YOUR MOM WILL LEARN TO PACE HERSELF, WITH YOUR HELP. SHE NEEDS SUPPORT AND UNDERSTANDING AND A GOOD DOCTOR...NOT ALL DOCTORS UNDERSTAND LUPUS. LUPUS IS NOT A DEATH SENTENCE EVEN THOUGH MOM LOOKS LIKE IT...THERE ARE SO MANY TREATMENTS AND INFO AVAILABLE ON LINE. YOU CAN HELP YOUR MOM BY EDUCATING YOURSELF. DON'T BE SCARED, YOU HAVE MADE A GREAT STEP BY JOINING IN WITH WE "LUPIES", ANY QUESTIONS YOU HAVE FEEL FREE TO ASK. GIVE YOUR MOM A GENTLE HUG, MAKE HER A CUP OF TEA, HEAT UP A GRAIN BAG FOR HER CHEST AND TELL HER YOU LOVE HER THAT SHE IS NOT ALONE.
CHIN UP...CAFRIN

hippimom2
12-16-2005, 07:06 AM
Hi Cookie. Like Cafrin said, lupus is no longer a death sentence. There is no cure for lupus, but people usually live a long life. Like Cafrin said, the doctors just need to get your mom's symptoms under control so she is more comfortable. Your mom will probably always have some pain and be tired a lot, but there are a lot of medicines that can help with the symptoms your mom is having. I know my kids get scared sometimes when I am feeling really sick. It looks and feels like I'm dying, but it just means that I'm having a bad flare.

Have you read much about lupus? That might help ease your fears. The lupus foundation of America has some great information and it might help you feel less scared. I'm sure this is really frightening for you to see your mom like this. Please post here anytime you want to. Take care and let us know how your mom is doing. (((((hugs)))))

Saysusie
12-19-2005, 08:27 AM
Hi Cookiecrumber:
You have been given some excellent advice already. Just know that, like both Hippimom and Cafrin said, Lupus is treatable and can be controlled with the right medication and some lifestyle changes. Your mom will have good days and bad days, but with your help and understanding, she will always have blessed days. Like Hippimom suggested, keep learning as much as you can about Lupus so that you will continue to be a help to your mom. Once you have an understanding about what is happening to her, you will be able to ease her mind as well as yours. Take the journey with her, teach her about Lupus while at the same time, learning about it yourself. Try not to overstress yourself about this. Her doctors are currently working on getting her symptoms under control and finding the right medications for her so that she can begin treatment.
We will always be here to help you and your mom anytime that you need answers, information or just support!

I wish you and your mom the best!!

Peace and Love to you and your family
Saysusie

catlady4520
12-19-2005, 09:24 AM
I know how you feel! I have a teenage son and he got really concerned when I was diagnosed with lupus of the brain. I used to have bad seizures and though they are scary, my doctors helped me with treatment to get this under control.

Support your mom and offer to do things she has trouble doing. If her joints hurt quite a bit, offer to do some lifting for her.

Our prayers are with you and your mom!

TracyDawn
12-20-2005, 12:57 PM
I am so sorry. You have received some great tips already and my main suggestion would be to read and learn what you can. You won't fully know what she is feeling but you can get informed. It's great you came here, and can get support for her and yourself. Just let her know you are there and will help with whatever she needs. {{HUG}} I really hope she feels better quick, and yes that is possible with the right meds, diet, etc. She might have one good and one bad day, but you really learn to appreciate the good when they come. Just make sure she rests and takes care of herself, and don't overdo it on those good days.

biancavizz
12-21-2005, 10:19 AM
hi cookie crumbler:
I understand that you're scared for your mom, but really sweetheart don't get yourself all hyped up because you're going to make yourself sick in the process!
Lupus differs between people, the symptoms anyways. So far i have every symptom except the kidneys. I had hair loss about a year n a half ago but that doesn't mean much. There are people with a minimum amount of symptoms and still have lupus.
Good luck and tell your mom it's good to talk on here too!
-Bianca-

cookiecrumbler2005
12-21-2005, 06:47 PM
:wink: thank you everyone who wrote back it has helped alot. i have read and learned alot more and am looking forward to the specialist appointment she has.My mom has quit her job because she is finding it hard to handle and is now looking after my children in the am giving her the rest of the day to her self and she has said she feels alot better.I have read your responses to her and that is helping her too.Just wont to wish you all a happy and joyful christmas with your frinds and family,and a happy new year. :x-mas:

TracyDawn
12-22-2005, 05:18 AM
Same to you. And I hope the new year brings lots of good health to your mom. Happy to hear she is feeling better. :)