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Saysusie
11-27-2001, 01:04 PM
The most important thing to remember is that you can take a central role in the managing of your illness. Avoiding the sun, exercising and regular health care are essential in keeping yourself healthy.
Lupus is a difficult disease to understand, but it can be managed.

admin
11-27-2001, 02:01 PM
Thanks for your help Suzie!

jamesron41
03-29-2002, 06:15 PM
Yes, thank you!

Saysusie
05-21-2002, 01:47 AM
New topics added in this forum with beneficial information!

l_verca
06-27-2003, 08:05 AM
Dear Susie,

Thanks for the encouraging words...

Verca

Saysusie
11-15-2003, 11:18 PM
From: LIVING WITH LUPUS
Lupus is a chronic disease. There is no known cure, but the disease can be controlled. This becomes the responsibility of a health care team, which often consists of a rheumatologist (a doctor who specializes in conditions of the joints and connective tissues such as rheumatoid arthritis and SLE), a nephrologist (a doctor who specializes in kidney diseases), an advanced practice nurse, a social worker, and perhaps other consulting doctors, like a dermatologist, psychologist, or infectious diseases specialist. Because lupus is different from person to person, the team will tailor the treatment program to the needs of the individual patient. The patient must take part in planning the treatment course. Living with lupus involves recognizing and managing symptoms as well as being able to control or modify a daily routine as necessary. This includes being flexible and having a supportive atmosphere.

Almost all patients take medication to control inflammation and reduce the risk of flares (periods when the disease gets worse). Doctors frequently prescribe corticosteroids such as prednisone. These aren't the same steroids some athletes take. Corticosteroids can have side effects - including weight gain, acne, high blood pressure, osteoporosis, and cataracts, and therefore, the dosage must be carefully monitored. Anti-malarial drugs like hydroxychloroquine are sometimes prescribed to ease skin and joint symptoms. For day-to-day muscle and joint pain, patients can take acetaminophen (Tylenol) or any of a variety of nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, ibuprofen, or naproxen. Some patients with kidney disease may require more aggressive treatment with an anti-cancer drug, cyclophosphamide.

Preventive behavior can also help patients minimize lupus flares. Doctors advise patients to avoid too much sun exposure by wearing sunscreen and protective clothing when outside. Regular exercise can help prevent fatigue and joint stiffness. A balanced diet and sufficient rest are also important for maintaining general health and well-being. Patients taking prednisone may need extra calcium in their diet.

Despite these precautions and lifestyle changes, much of the disease's course cannot be predicted. "That's one of the harder things for patients." says Gail McIlvain-Simpson, MSN, RN. "It's really scary. There may be a lot of variability from day to day, making it difficult to plan ahead."

Living well with lupus depends largely on respecting limits every day, and that can be a problem for homemakers, wage earners and parents. Patients with Lupus should be willing to make time for rest in order to lessen the effects of fatigue.

Linda From Australia
05-22-2011, 12:56 PM
Would I be correct to say this is the first thread posted on WHL?
If it isn't I would be interested to find out which thread was.
What else does someone do when they haven't been able to get to sleep yet because of pain. Well, search for stuff on WHL, what else is there to do at 3:55am?????

Thank You Conrad and Saysusie for keeping me company when the only company I have in the middle of the night is my pain and suffering!

Glibby
05-23-2011, 08:08 AM
The most important thing to remember is that you can take a central role in the managing of your illness. Avoiding the sun, exercising and regular health care are essential in keeping yourself healthy.
Lupus is a difficult disease to understand, but it can be managed.

I am feeling pretty hopeless about my situation at the moment, but....

I was led to this bit of encouragement. I need to read this today.

Peridot20_Gem
05-23-2011, 03:18 PM
Hi Saysusie,

Excellent thread about coping but myself i feel like Gibbly does...i'm aching and cramps all the time.. things seem alot besides my breathing.. i'm going aorund on a 3 wheeler walking frame.. if its not that it's my wheelchair and when i need to go out it's my electric scooter.

At 42 where's the life ahead that's how i feel of late and totally trapped and most of my days of the month are hospital visit's and Taxi's, i mays well hand my purse over to the taxi firm and take a foldup bed to the hospital.

Sorry saysusie but i'm just finding it hard besides everything else that i've got but i do admire other member's who have such a strong mentally to rise above it but my body feels done for and b.ggered up.

merryalliss30
05-27-2011, 06:24 AM
Would I be correct to say this is the first thread posted on WHL?
If it isn't I would be interested to find out which thread was.
What else does someone do when they haven't been able to get to sleep yet because of pain. Well, search for stuff on WHL, what else is there to do at 3:55am?????

Thank You Conrad and Saysusie for keeping me company when the only company I have in the middle of the night is my pain and suffering!

I used to feel my pain even when I was asleep. It really does make it difficult to sleep when your hurting like that. Have you tried sleeping pills? Ambien is really good. I was on that for 10 years, now all I need to take is neurontin when I go to bed and I sleep all night. Sometimes I have to take NSAID's at bedtime too, depending on how bad I hurt.