View Full Version : HI, I'M A NEW MEMBER
02-20-2007, 08:33 PM
HI ALL, MY NAME IS JOSIE AND I'M 38 YRS OLD, MARRIED 18 YEARS WITH 2 KIDS. I WAS TOLD IN 92 THAT I HAVE A KIDNEY DISEASE THAT COMES FROM LUPUS, AND OFFICIALLY DIAGNOSED WITH LUPUS IN 2003. IF YOU COULD UNDERSTAND THAT, I DONT BUT WHATEVER. APPARENTLY, THOUGH, I'VE HAD IT SINCE I WAS 13 BECAUSE THATS WHEN I STARTED WITH RHEUMATOID ARTHRITIS. I NEVER THOUGHT I WOULD NEED TO JOIN THESE LUPUS SUPPORT GROUPS OR FORUMS, BUT I DECIDED TO BECAUSE I'VE BEEN KIND OF IN THE DUMPS LATELY. AND I GUESS I JUST NEEDED TO KNOW THAT THERE ARE OTHER PEOPLE LIKE ME AND KNOW WHAT I'M FEELING. I'VE HAD PLENTY OTHER COMPLICATIONS ASIDE OF LUPUS BUT I THINK LUPUS HAS MADE HEALING PROCESS ALOT MORE DIFFICULT FOR MY OTHER ISSUES. WELL, HOPE THIS HELPS ME OUT OR EVEN BETTER MAYBE HELP SOMEONE ELSE FEEL BETTER
02-20-2007, 10:41 PM
Hi Josie -
Welcome! I'm glad you are here. I hope you find this place as helpful as I have.
There are tons of great, supportive people here and I think it's fair to say that we've all felt "down in the dumps" from time to time. It makes it a lot easier knowing we are not alone.
02-22-2007, 02:14 AM
I`m shoure you`ll find supportive people here :lol: . it is so nice feilling when you share your problem with someone who understand you. I just would like to say WELCOME from Croatia in Europe.
I wish you lots of luck ,69bobo
02-22-2007, 12:16 PM
Hi Jose. Welcome to our little group. We have wonderful people here from all over the world who understand what it is like to be "down in the dumps", because of health issues. We try to support, encourage and help each other as much as possible. Because being sick can be such a lonely, fearful, painful, and isolating experience at times it is helpful to have a place to visit and people to talk to when you feel like no one else understands. This is also a great place to find information, and we have some very knowledgeable people here that share their experience and knowledge freely.
Welcome aboard.........................from Canada beautifulbeluga
02-22-2007, 01:31 PM
THANKS ALL SO MUCH FOR WELCOMING ME, I HAVE TO SAY I WAS A LITTLE NEGATIVE ABOUT JOINING TYPES OF SUPPORT GROUPS OR FORUMS. I DIDNT WANT TO BE ONE TO "COMPLAIN". I REALLY DONT LIKE THE FEELING OF PEOPLE FEELING SORRY FOR ME. BUT I REALIZE THAT THIS IS NOT WHAT IT IS. I WAS KIND OF HOLDING IT ALL IN, I DONT WANT MY HUSBAND AND KIDS TO WORRY FOR ME, THEY HAVE BEEN THROUGH SO MUCH ALREADY WITH AN ALMOST NEAR DEATH SITUATION. I FELT ABSOLUTELY HORRIBLE ABOUT THAT. I ALSO NO LONGER FEEL COMFORTABLE TO DISCUSS ISSUES WITH MY DOCTORS BECAUSE THEY LET ME DOWN. I DONT TRUST DOCTORS AND YET MY LIFE IS IN THEIR HANDS, FUNNY HUH. NOW BESIDES DEALING WITH LUPUS I NOW HAVE TO DEAL WITH PROBLEMS WITH MY ESOPHAGUS BECAUSE OF DOCTORS NOT LISTENING TO ME.
I TAKE MEDICINES, BUT COMPARED TO SOME OF THE PEOPLE HERE,I DONT TAKE THAT MANY. PLAQUENIL, PERSANTINE WITH ASPIRIN, AND COZAAR IS MY DAILY DIETARY INTAKE,LOL. AM I SUPPOSED TO FEEL A DIFFERENCE. PERSANTINE WITH ASPIRIN I HAVE TAKEN FOR 16 YEARS BECAUSE THATS WHEN I WAS DIAGNOSED WITH A KIDNEY DISEASE, COZAAR AND PLAQUENIL FOR 4 YEARS. OF COURSE I TRIED MANY OTHER MEDS. THE BEST ONE WAS PREDNISONE, BUT I HAD A BAD SIDE EFFECT WITH THOSE AND IT WAS SERIOUS WEIGHT GAIN, HAHA. THEN I WAS ON METHOTREXATE I WAS SICK WITH INFECTIONS ALL THE TIME WITH THAT. I DONT TAKE ANYTHING FOR PAIN, BECAUSE I HAVE TWO KIDS THAT NEED ME TO BE THERE FOR THEM I CANT BE STONE COLD IN BED. SO I DEAL WITH THE PAIN, ITS USUALLY NOT BAD CUZ I'VE HAD ARTHRITIS SINCE I WAS 13 SO I'M PRETTY MUCH USED TO IT. MY HANDS ARE VERY DISFIGURED AND IT MAKES IT HARD TO DO THINGS BUT I'M FINE WITH THAT. BUT LATELY I HAVE REALLY BEEN IN ALOT OF PAIN AND TIRED AND RASHES AND HIVES ALL OVER MY BODY, KIND OF SCATTERED,ONE GOES ANOTHER COMES. AM I IN A FLARE UP. I DONT KNOW WHAT A FLARE UP IS, I THINK ITS DIFFERENT FOR EVERYONE.
WOW, I KIND OF WENT ALL OVER THE PLACE WITH THIS POST BUT NOW THAT I HAVE SOMEONES TO TALK TO I FEEL OVERWHELMED WITH THINGS AND QUESTIONS I WANT TO SAY AND ASK.
02-23-2007, 09:43 AM
Hi Josie :lol:
First, let me also welcome you to our family where- yes, we all understand what you are feeling, how you are feeling and we want to help you as much as we can and in any way that we can.
You are correct, Lupus flares are as different for each of us as is the disease itself. Basically, we are told that a flare means "worsening of symptoms" or "activitiy of the disease" or "development of new symptoms"
With these definitions is mind, I would say that it sounds as if you might be experiencing a flare-up. The length and occurence of a flare is also specific to the individual. There are some common features that have been found to trigger a lupus flare. Those are: Exposure to the sun which can cause a sudden development of a rash and possibly other symptoms (such as hives). An infection, perhaps a cold, flu or a more serious infection (especially if it does not get better) can cause other complications which may be the first signs of la flare. Overwork or not enough rest; stress or an emotional crisis; exposure to sources of ultraviolet light; injuries or surgery; pregnancy or the time right after the baby's birth (the postpartum period); sudden stopping of medications for lupus; sensitivities or allergies to items that you put on your skin, such as hair dye, hair permanent solution, makeup, and skin creams; certain prescription drugs; over-the-counter medications, such as cough syrup or laxatives; and some immunizations.
The Lupus Foundation of America lists the following as signs and symptoms of a Lupus Flare:
Persistent fatigue out of proportion with what you would usually expect
Aching all over
Fever, which may be slight to high (you can check your temperature yourself)
Persistent loss of appetite
Involuntary weight loss
Increasing hair loss
Recurring nose bleeds
Sore on the roof of the mouth, which burns with spicy foods
Unexplained skin rash anywhere on the body
Sores on the skin
Stiffness of the joints when waking up in the morning
Chest pain which increases with breathing
Shortness of breath
Coughing up blood
Persistent unusual headache
Nausea or vomiting
Recurring or persistent abdominal pain
Persistent, increasing swelling of the feet and legs
Blood in the urine.
According to "Lupus: a patient care guide for nurses and other health professionals" here are some things that you can do to avoid a flare:
*Learn to recognize the warning signals of a flare and tell your doctor about them.
*Maintain your physical health. Be sure to visit your doctor regularly, even if you are feeling well.
*Schedule regular dental, eye, and gynecological exams.
*Get enough sleep and rest.
*Be flexible with your schedule of daily activities.
*Try to limit your stress. Because this may be hard to do at times, consider developing a plan for dealing with potentially stressful situations.
*Develop a support system that includes family, friends, medical or nursing professionals, community organizations, and support groups. *Remember, it helps to talk to someone when you're feeling stressed.
*Participate in a well-planned exercise program to help you maintain physical fitness and reduce stress.
*Eat a healthy diet.
*Limit your exposure to the sun and other sources of ultraviolet light, such as fluorescent or halogen lights.
*Tell your doctor right away about any injury, illness, or infection or if you do not feel well in any way.
*Delay elective surgery (including dental surgery and teeth pulling) until your lupus is under control or in remission.
Lupus may cause problems for a pregnant woman and her baby. As a result, women with lupus should carefully plan any pregnancy. Do not stop using your method of birth control until you have discussed the possibility of pregnancy with your doctor and he or she has determined that you are healthy enough to become pregnant.
Talk with your doctor before you stop taking any prescribed medications.
Check with your doctor or nurse before taking any over-the-counter medications.
Be careful when trying any over-the-counter preparations used on your skin or scalp. First, determine whether you have a sensitivity or an allergy to it. Put a small amount of the preparation on the inside of your forearm or on the back of your ear. If any redness, rash, raised areas, itching, or pain develops, do not use the preparation.
Be aware that certain prescription drugs may trigger a flare. Tell any doctor, nurse, or health care professional you visit that you have lupus. Also tell your lupus doctor or nurse if any new medications have been prescribed for you.
Be sure to check with your lupus doctor before receiving any immunization. Routine immunizations, including those for the flu and pneumonia, are an important part of maintaining your health, and you should get them if your doctor approves.
I hope that I have been helpful. Please let me know if you need anything further. We are here for you :lol:
Peace and Blessings