NEW, JUST UNDIAGNOSED
I'VE READ ALOT OF YOUR ENTRIES AND I KNOW HOW MANY OF
YOU FEEL, ALTHOUGH MY LUPUS HAS NOT YET AFFECTED ANY OF
ORGANS I WORRY ABOUT THAT ALOT.
BLESS YOUR HEARTS TO ALL OF THAT ARE SO VERY SICK.
LUPUS WAS FIRST MENTIONED TO ME IN 2003 WHEN I WAS AT
MY DOCTORS OFFICE 3 OR 4 TIMES A MONTH AND HAD POSITIVE
ANA. I WAS DIAGNOSED IN 2004 BY MY PRIMARY CARE DOCTOR.
WHO HAS TREATED ME ALL THIS TIME. SINCE FEBRUARY I HAVE
BEEN WORSE SO HE SENT ME TO A RHEUMATOLOGIST ON MONDAY
HE SAYS I DON'T HAVE ANY AUTO-IMMUNE DISEASE, AND WANTS
TO KNOW WHY MY DOCTOR IS TREATING ME FOR SOMETHING
THAT I DON'T HAVE. HE TREATED ME LIKE HE THOUGHT I WAS
CRAZY WHEN I TOLD HIM ABOUT MY SYMPTOMS- ESPRCIALLY
WHEN I TOJD HIM THAT THE SUN MAKES ME PHYSICALLY SICK,
EVEN WHILE DRIVING. I LIVE INSIDE MY HOUSE, RARELY GOING
OUT-SIDE, NOT EVEN TO THE MAILBOX, I'M IN CONSTANT PAIN,
MY MEMORY IS SHOT, MY TONGUE STAYS SORE AND BURNS
AND THIS DOCTOR MADE FEEL CRAZY AND VERY UNIMPORTANT.
LIKE MAYBE HE THOUGHT I WAS MAKING-UP ALL THESE CRAZY
PROBLEMS. HE DID DO ANOTHER ANA, AND HE WOULD SEE ME
AGAIAN IF IT WAS POSITVE, BUT I'M NOT GOING BACK TO SEE
HIM AFTER THE WAY HE TREATED ME! WHY WOULD I WANT TO
SEE A DOCTOR THAT DOESN'T BELEIVE I COULD HAVE LUPUS
AND A NEGATIVE ANA.
I HAVE AN APPOINTMENT AT UAB IN SEPTEMBER, BUT I DON'T
THINK I CAN WAIT THAT LONG. I AM MISERABLE MOST DAYS
MY DOC WON'T INCREASE MY PREDNISONE, OR MY PAIN MEDS
UNTIL I SEE A RHEUMATOLOGISTS. I FEEL TRAPPED BETWEEN
MY FAMILY IS GREAT, EVEN MY CHILDREN [AGES 8 & 9] SOMETIMES
I CAN SEE THAT THE GET ANGRY ABOUT MY BEING SICK, BUT
THEY'RE NOT MAD AT ME. I TRY TO BE UNDERSTANDING OF THEIR FEELINGS, AND ALLOW THEM TO FEEL THEM, OVER ALL
I THINK THEY COPE VERY WELL. I AM VERY LOVY MOM. I KISS
AND HUG ALOT, TELL THEM WHAT GOOD, SMART SWEET KIDS
THEY ARE. I THINK THEY NEED EXTRA TLC, BECAUSE THEY MISS
OUT ON SO MUCH BECAUSE I CAN'T DRIVE HERE OR THERE,
OR TAKE THEM SWIMMING, OR GO OUT SIDE WITH THEM. IT IS
A HARD LIFE FOR KIDS, BUT WE COMPENSATE. WE PLAY CARDS
BOARD GAMES, WE GO OUT AFTER SUNDOWN WHEN I'M NOT TOO
TIRED. WE DO HOUSE WORK TOGETHER, DRAW PICTRES FOR
I THOUGT FOR A LONG TIME THAT I JUST COULN'T DEAL WITH
LIFE, I WAS LAZY. IT WAS SUCH A RELEIF TO HAVE A NAME FOR
MY PROBLEMS. AFTER THE INTIAL FEAR AND ANGER WORE-OFF
I FOUND WAYS TO COPE. UNTIL HERE LATELY. IT SEEMS LUPUS
IS STRONGER THAN ME. I'VE BECOME DEPRESSED.
SO I FOUND THIS WEB-SITE. I NEED PEOPLE THAT LIVE WITH
THE SAME PROBLEMS. AN UNDERSTANDING FAMILY IS NOT ENOUGH ANY MORE. I FEEL ALONE, INSIDE MYSELF, EVEN WHEN
I'M SURROUNDED BY MY FAMILI. THEY LISTEN TO ME AND TRY
TO HELP, BUT THEY CAN'T EVER KNOW WHAT IT IS LIKE TO
LIVE THIS WAY.
SORRY FOR RAMBLING ON AND ON, I COULD GO ON FOREVER,
BUT I'LL END HERE. I AM VERY HOPEFUL THAT THIS WILL BE A
TURNING POINT IN MY LIFE.
THANK-YOU TO ALL WHO READ AND REPLY
I understand your frustration, I went for months to Dr.'s who said my physical symptoms were a result of psychological problems (in short that I was making it up). It took several months to determine it was Lupus, as I understand it, this is typical.
I have children 5 and almost 2. It is difficult, because they don't-can't, understand. It sounds like you are doing a wonderful job--still spending what time you can with them.
The sun bothers me quite a bit as well, and I live in Hawaii--land of eternal sun. I don't know if this is possibe for you but, I tinted my windows on my car, I wear long sleeves (and yes look like a fool, when everyone else is wearing as little as possible :? ), take an umbrella (to block the sun), and have an increasingly nice hat section in my bedroom.
Are there other rhuemies you can see? If not, just be as assertive and proactive as possible. Joining this site was a great step in the right direction. You are as strong as you want to be--this thing can't beat you unless you decide to give up.
I'm new to this site, but not to Lupus. It sucks sometimes, but the important thing is to hang in there. Educate yourself and your family-even your children.
Hang in there, we're here for you, and WE'RE LIVING IT TOO SO WE DO UNDERSTAND!
Hi Malay*b :lol:
You are truly a wonderful and loving mother and your children are very lucky. Happy1 has given you some excellent advise, so there is not much that I can add in that area. I just wanted you to know that you have come to the right place. You are not alone and everyone here wants to make sure that you know that and that! We also want to make sure that you know that there will always be someone here to answer your questions, to provide information, to give you support, to give you comfort and to let you know that we understand. You will never be judged here nor will you ever feel that you are being dismissed. Please come to us whenever you need and we will help in any way that we can.
Again...remember that you are not alone and we do, indeed, understand!
Peace and Blessings
HAPPY1 & SAYSUSSIE,
THANK-YOU SO MUCH FOR YOUR REPLY. I DIDN'T REALIZE HOW
GREAT IT WOULD FEEL TO HEAR FROM PEOPLE WITH LUPUS.
I HAVE TINTED WINDOWS, LOTS OF HATS, AND I TOO, LOOK LIKE
A FOOL IN MY LONG PANTS AND SLEEVES IN 100 DEGREE TEMPS.
BUT THAT IS PART OF MY LIFE.
I DO HAVE AN APPOINTMENT WITH ANOTHER RHEUMMY, BUT NOT
UNTIL SEPTEMBER. I'LL MAKE IT THAT LONG.
HAWII HUH? I BET IT IS BEAUTIFUL. I LOVE THE BEACH AND THE SMELL OF SALT WATER. I'M SURE I'VE NEVER BEEN ANYWHERE AS COOL AS HAWAII.
I LIVE IN CENTRAL ALABAMA. IN THE COUNTRY. I SEE LOTS OF COWS, CHICKENS, DEER, THE OCCASIONAL ARMADILLO & COYETES.
I LOVE HOW PEACFUL IT IS AWAY FROM THE CITY.
THANK-YOU SO MUCH FOR SAYING I WOULD NOT BE "DISMISSED"
WHAT A RELIEF! THAT FEELING SEEMS TO GO ALONG WITH
HAVING LUPUS. SO MANY PEOPLE JUST DON'T UNDERSTAND IT -
NOT EVEN SOME DOCTORS.
I LOOK FOWARD TO GETTING TO KNOW YA'LL & HOPE TO HEAR FROM YOU SOON
Welcome to the Forum! I'm really glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I think that we can all relate to the floppy hats, long sleeves and long skirts or pants in 100+ degree weather. But, like you said, it is part of our lives now and personally, I like to think that I am making my own fashion statement. And, besides, whomever does no like my look, does not know me and, therefore, their opinion does not matter! My friends and loved-ones know why I do this and they understand. So, knowing that is enough for me.
So ..."Gurl, put your records on, tell me your favorite song..just go ahead and let your hair down!!!!!" Corrine Bailey Rae
Peace and Blessings
Malay, I can so relate. Dont waste your time on insesitive doctors that dont care enough to put themselves in your shoes. I started having problems when I was pregnant with my son and they just told me it was pregnancy indulced Carpo Tunel. I couldnt wash my own hair or fold my clothes. CRACK POTS!! Okay, I am better now. This all started in 03 and I just got dignosed. What kind of pisses me off is the doctor didnt tell me what I had, like the Lable of Lupus. I requested my records so I can apply for disability and then read it for myself. I actually found out this week that there is more going on with me then just that. Frustrating. I guess she didn't want to worry me. But, when you feel like hell and your body is on fire, it would be nice for them to let you know you are not crazy.
Sorry, I got back up on my soap box again.
You are very lucky you have that family support. My son is 3 now and he cant be in the sun either. He is on seizure meds and disorder and a photosesitivity....so that works out for me. But, it is still chalenging because just the heat alone wears us both out. We are in Texas and for some reason they think we should have an out door party for every and any reason.
I just keep telling myself it will get better.
See, you found somebody that babbles on and on more then you do.
My advice, get a new Rheum. I would keep your PCP...well, on the other hand that crack pot should have sent you to a rheum a long time ago when he had his suspitions. FIRE THEM ALLLLLLL!!!!!!! I have had 3 PCP this year. Finally found one I like. I am working on my 2nd Rheum, if she doent play her cards right.....Very soon she my be in my doctor grave yard of crack pots. I have a couple of plots there for yours too.
Tanya....have a good week. I am sure you now know that you are not crazy, that it is actually me who is.
Thanks for the reply. I know how you feel about doctors. I wonder why some of them even became doctors. I think some do it just for status- They know everything the rest of the world is "stooopud"
I am going to see another Rheumy in sept. I'm hopeful, but try
not to get my my hopes to high, for fear of disappointment. This
will be my third rheumy, and I'm on my 4th pcp. I stay with him
because he always believes whatever I tell him about my crazy
symptoms, that means alot to me.
My little girl - 9- has symptoms- not sever, but enough to make
believe that she also lupus. I took her to see my pcp- he said don't get a head of myself. I am gonna talk to the rheumy about
it. Provided she doesn't get sick again before sept.
I feel for your little boy- its hard enough knowing that they have
to watch us be sick, but to watch them in return seems down
right wrong. I wish you the best in finding ways to improve your
on quality of life. I know people think I'm crazy for some of the
things I do. Me & the kids stay up really late at night, cause its
cooler, we go outside after sundown & and on cloudy days. I've
learned to do things that work for us, and not to care what
Babbling on & on again
I WISH THE BEST OF EVERYTHING FOR YOU
AND YOUR SON