View Full Version : New and very Lupie need any help I can get
07-24-2008, 01:52 PM
Well I consider just a few short months (actually almost 5) to be newly diagnosed...what a confusing disease...wow I have been working with my family physician who actually diagnosed me...what a god send he is...unfortunatly I just got the talk on monday that I am putting nails in my own coffin by not slowing down and letting the medications do what they need to...currently Iam on 8 a day...hope to reduce that soon...I guess I just have a hard time grasping on to the fact that I have a chronic illness and things need to change...I sometimes talk myself into beliving that I have brought some of it on my self, or Iam just a little crazy...who knows so I thought a chat with others in the same boat as me might help a little... thanks for listening...
07-24-2008, 03:25 PM
Welcome to the forum. I hear where you are coming from. I have had Lupus most of my life and believe me this is a long time. I will be 50 in December and everyone is right that you have to change your lifestyle. There is nothing that you could have done to cause this nightmare of a disease. It is unfortunate that you have to have it as it is for any of us. It is hard when you have to alter your life, but seriously you really have to. This illness can kill you and I hope that you can make the adjustments that you must make. There will be others that come on here that have a lot of information. I just want to welcome you and tell you that you are not alone. There are a lot of us afflicted with this illness and we all care for you very much.
07-24-2008, 04:37 PM
Nooo L -
You in no way caused this lousy disease for yourself. However, you are NOW responsible to try and stay well. Many many of the prevention of, and/or lessing the severity of flares is up to us. It is really essential that we adhere to a good lifestyle (things we really should be doing anyway...lol). But, honestly, I for one, was amazed at how much better I felt when I started to take some of the advice here (which comes from seasoned lupies).
1) You really need to listen to your body - If you feel tired, then you ARE tired. Your body is telling you to rest or take it easy. Over doing it can casue a flare
2) We must be sure to eat a healthy diet which is low in sugar and salt. Sugar is a natural inflammatory. Salt is bad for the arteries, and lupus patients have a much higher risk of arteriosclerosis (arteries getting smaller) which can lead to heart problems or even death. There are foods as well that are natural ANTI-inflammatories (i know nuts is one, there is alot of info about nurtition here for you)
3) Avoid UVA/UVB rays...this means the sun, tanning booths and flourescent lights. These rays not only trigger the rashes we get, but they also trigger the actual antibodies that are responsible for our disease. Always wear good SPF, a big hat, long sleeves and glasses (i know, really pretty!!)
4) Dont miss any medication and/or doctors appts. THis disease can progress without causing any symptoms. THerefore, you may feel well, but your kidneys, for instance, may be in trouble regardless. Docs need to monitor your disease on a regular basis.
5) Get enough sleep. We dont get enough restorative sleep as it is, whether due to the illness, the meds, urinating all night, etc. If you feel like you need a nap, take a nap!! Youre NOT being lazy by resting - you are taking care of your disease!!
So, no - you didnt cause it, but you can prevent alot problems (not all, of course - this disease has a mind of its own).
There are really informative stickys at the top of the page that will be really helpful to you. I know youre new at this, so know that NO question is too small...Knowledge is definately power with this disease.
Good luck and keep posting!!
07-26-2008, 12:26 PM
Welcome to our family :lol: Lauri has given you excellent advice and I cannot add much to what she has told you. I will reiterate, however, the fact that you DID NOT give yourself this disese.
Many times, we've realized that we suffered from Lupus symptoms for many years before we were diagnosed. I remember looking back at my Jr. High and High School days and saying, "Oh, so that's what that was. That was Lupus affecting me even back then!"
Most of us have learned that our Lupus became active after an illness, after a surgery or during a very stressful period in our lives. My lupus activated after a long period of continuous stress in my life! So, as Lauri stated, we do not cause our Lupus, but we are responsible for managing it. The purpose of treatment (both medically and with lifestyle changes) is to avoid a flare-up, avoid worsening of symptoms, and avoid the development of new symptoms. You must be willing to take pro-active measures in order to do the best that you can at managing your disease. Most of those steps were outlined by Lauri and I hope that you do heed her advice.
Everyone in this family is more than willing to help you in any way that we can. I'm glad that you joined us and please know....you are not alone!
Peace and Blessings