Lupus is a chronic, auto-immune disease in which the body's immune system forms antibodies that attack healthy tissues and organs. If left untreated, lupus can be serious and even life threatening. Here I share how I am using my artwork and learning music to navigate me towards a simple goal of daily peace~

Bright Bird

Bright Bird
scroll way down to view my Hawaiian photos and don't forget to feed the fish!

Sunday, June 6, 2010

SERIOUSLY, Basic Triggers

There are basic triggers or activators that can effect how you feel daily and even set off a flare if you suffer from lupus. I am going by the straight assumption here that you have SLE lupus or know some one else who does. If you are newly diagnosed with this auto immune disorder, then you need to google all you can about your condition. Start with Wikipedia and read it as much as you can (it is very detailed), scroll down to the bottom. It will list 'well known or famous people' who also suffer from lupus. Note there that the men who are listed have died due to their lupus. It states it very clearly. Most information will say that lupus hits males harder. AND lupus twenty years ago was once more life threatening, but due to life changes and managements it has moved into a better prognosis for most. So if you can mange it what would you do?
Pay attention to these triggers. The longer you live with lupus the more you will know how they effect you and how much you can get away with. GET AWAY WITH? Yep, we are all human and it is hard to change and if you have just learned you have lupus you are feeling cheated of your lifestyle, discouraged, scared and even angry. Look at these triggers and eliminate them as much as possible. You will feel better and you may even come up with one or two of your own. The key here is 'feeling' your body. You really have to be honest with yourself and very determined to make changes. Your life style as you lived it before lupus ~~~ is now gone.

*foods ~~ celery, sprouts, night shades such as potatoes and tomatoes, dairy, squash family which includes pumpkins, melons, even echinacea is very bad for auto immune disorders and you will see it in health drinks--not healthy for you my friend!., google around. It is a little different for some or foods lupus trigger has an individualized flux to it. You know all those people you see in the shopping isles standing around reading labels? That is me! And now it needs to be YOU!

* hair coloring and dyes ~~ this will start a flare every time for me. I noticed a particular feeling, a sickening unusual one, whenever I colored my hair and I would start running a low grade fever. Then I started to just highlight my hair keeping the dye off of my scalp. Now I am going gray and I am totally happy about it. I think that all the Chinese ladies walking around in Chinatown with the pure white hair then the bright red hair one inch down did it for me. Natural gray is cool!

* sunlight ~~ for some this is truer than others. I used to be unable to tolerate any sunlight, even the reflection off the cement and the amount we get in cars driving. I actually had a low grade fever for 2 years. I thought my brain was being baked. Sunlight was a factor in that for me. When I moved to Hawai'i my first lupus doc asked me why I moved there to so much sun? I looked at him and said ".... Kansas has sun too". These days I tolerate about 2 hours of sunlight a day. Factor in the reflective light too, which means I still watch it closely. To give the doc a break, the tropical sun is more intense. BUT I found better products there to live with. Like the UV ocean shirts for diving, surfing, snorkeling and Leather Kangaroo hats from Australia that are totally a sun block. Australia has a big ozone hole so they have great sun products! And I found a sun block that works for me. Most just make me burn. Bigger selection in da islands.

* all preservatives ~~ ZERO preservatives is best. This also includes all artificial sweeteners and anything that YOU are allergic too. Read the labels. Then you will be amazed and angry for all the crap this country dumps into our products. Eating out? No MSG ever! Do not get discouraged either. There is way more good stuff out there now than there was 10 years ago. Now go find it!

* stress or trauma ~~ physical and/or emotional. You will be amazed how even simple noise such as music being played while you are shopping can wear you out. That is sound bombarding your body. This is the extreme example, but learn to stay away from it. Like the three times when I was rear ended in car accidents and one that was a t-bone. Those people need to not hit me!

* viruses ~~ I run and really do mean I turn around and hustle away from coughing people and all small children! A virus will set off your body to attack itself. First, you will get over what ever you caught. Second, your body will give you a flare in response to the virus. Now I am 58 years old so my kids are now 30 and 26 years old. I currently have no grandchildren, hmmmmmmm, and I live isolated in the country not in a complex around other families. Perfect! But, while in Hawai'i in April I was meet at the airport by my friend and his daughter and her two children. They had me sit in the back between the two boys who promptly mauled me lovingly with their hands. As we drove away from the curb they announced that the kids had been vomiting during the night. uh, ohhhh. Yep, four days later I awoke at 2am with the stomach flu; the day I had to fly out of Honolulu. Three plane rides later I am home spending one week recovering from the flu and now four weeks recovering from the worst flare I have had in years. But this was my fault. I didn't call ahead and check knowing that they had two small kids.
You can't expect anyone to monitor your world. You have to do it!

* anti-biotics ~~ this will cause a flare too. Don't take them unless you have to. If you are sick and then really need them and the doc says so, then don't worry about it.

What else? I am always up dating what I put in here. This is actually hard to sit down and think about how I have been living for the last ten years. I don't want to sound scary or negative, but I will say very honestly what has worked for me, what hasn't worked for me or what ever I have learned the hard way. My Mom says that no one likes the way I am too frank in my opinion and responses to people. Well, ...............if you have diarrhea and are throwing up then no one wants to visit you.....

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