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View Full Version : What's your best advice to newly dx Lupus patient?



Colleens
10-29-2005, 08:58 PM
Post your best advice to me as a newly diagnosed Lupus patient.

hatlady
10-30-2005, 03:14 AM
Take it one day at a time.

Look at the post about "read this, it is exactly how we all feel!" and look at "butyoudontlooksick.com" and the spoon theory.

participate and read. Have hope. Remember that life is good.

Colleens
10-30-2005, 09:21 PM
Thanks for your reply hatlady!

Saysusie
10-31-2005, 07:04 AM
Hi Coleen: :-)

Being newly diagnosed with lupus, you probably are glad to finally know what all of your aches, pains and illnesses are about. Now, you will probably go through a period of anger and fear. Both of these emotions are normal and will probably lead to other emotions throughout the course of the disease.
It will be difficult learning to live with a disease that has no cure, especially knowing that it will now make significant changes in your life as well as the lives of those who care about you. But, I always like to say that you should remember that you are not alone and with good medical care, knowledge and a concentrated effort to take care of yourself, you can live long and live well with lupus.
Lupus is a chronic disease, allow yourself to accept help when you need it - both for your physical symptoms, but also for your emotional symptoms (and you will probably go through some emotional ups and downs). Learn how to give your body recuperative rest periods and do not try to do everything yourself.
You will have good days & bad days. Remember what Hatlady said, to take one day at a time. On bad days, if you feel tired & in pain, then allow yourself to rest. On good days,you can be a bit more active. Sometimes, when we feel good, we tend to do too much and then we suffer for several days to weeks afterwards!
Do not expect so much from yourself and learn to let some things go for today - nothing bad will happen if you put the dishes or laundry off until tomorrow! You will probably be surprised how willing your friends and loved ones are to take some responsibilities over in order to let you rest!
Some of us have had to give up our jobs because of the debilitating pain and fatigue that we suffer from or because of the emotional difficulties we encounter because of our illness (lack of concentration - depression - etc.)
Try to remember that it is very important to take care of yourself and your health and added stress only worsens the symptoms of Lupus! If you have to give up your job, don't forget that you may be eligible for some state or federal benefits and there are organizations who can help you with that. Another option may be to look for a less demanding job, or work from your home, if that is possible.
Loving, educated and supportive friends and family are important, now more than ever. Do not try to hide your aches and pains from them for fear of being pitied. If they are educated about your illness and understand what you are going through, they can be a wonderful source of support. But, at the same time, you may find that you do lose some friends and that you are too fatigued to participate in some of the things that you once participated in, that is a natural course of evolvement and, in most cases, you will find that you've made completely new friends during you journey; friends who are in the same sort of situation as you or who are completely supportive of you. Also, if your participation in some of your activities does lessen, tell your friends that you are just too fatigued and offer suggestions about alternative things that you can do with them. You may find that they are very receptive to this, very willing and very supportive!
Also, I think that it is very important to join a support group, they are wonderful for providing you with support, information, comfort and understanding. I think that knowledge is extremely important and will help you, your family and your friends to understand and cope with this illness!
Lupus can affect a person's appearance, & therefore affect self-confidence, but there are many ways of solving these problems. There are many good coverup cosmetics available (also available on prescription) which can cover up rashes. Choose clothing which helps disguise or distract the eye from the effects of fluid retention & swelling caused by some of the inflammation and medications. Hair loss is common and if you suffer from hair loss, there are a lot a natural looking wigs, weaves, etc. available. If you look better, you will be less self-conscious, & consequently, feel better.
I wish you the very best!
Peace and Blessings
Saysusie