Wednesday, December 31, 2008

OK, about LUPUS and SUPPORT and playin BASS!

I feel compelled to write about Lupus. I get many questions as to what it is, etc. Also, most people with Lupus look just fine. They don't look "sick". Leading many friends and family to say "you look fine, why don't you just get off that couch and do something!!!" Or, how can you stand up long enough to learn to play a bass guitar, or use your fingers????? However, those who live with a loved one with the disease long enough, or knew them before they were diagnosed with Lupus KNOW how it effects us. Also, they know how much we want to do the things we used to, or to not be in pain or in fear of Lupus' horrible symptoms and effects on our bodies. For me personally. I was very, very active. I trained horses and showed them since I was a kid. I lived on a ranch and we raised cattle as well. I was a gymnast in high school. I worked in the film and television business as a animal trainer (horses), stunt woman (on horses), trained actors how to ride, be safe, etc., worked in casting and many areas of production as it pertained to livestock. I had to travel a lot with horses, driving long hours and hauling horses. So as you can see, I was a pretty active person. Then I began getting very tired, then extreme fatigue, my joints hurt, I was in a lot of pain but couldn't take the pain meds because they made me ill. I couldn't "kick" the illness. I started having problems with my kidneys which was scarey. Lupus is a disease where your body turns on itself. Your immune systems works against you. So, it effects your organs, like the kidneys, heart, etc. The sun is your enemy, you can't be out in it. It can bring on a flare. And I LOVED the sun and water sports! I was finally diagnosed correctly, after many mis-diagnosis' (which wasn't their fault, it is just hard to diagnose) when a doctor did a barrage of blood tests and other tests. Once diagnosed, I was put on a couple of drugs for the symptoms. Like prednisone, and a drug used for malaria! They helped a bit when I was very, very ill. But I have chosen to try and fight it with taking care of myself. STRESS is very bad for Lupus. I try to stay away from it, but that is impossible!!! SO, I was SO down, felt like life was over, I was going to be old before my time. Can't do anything without fear of having to leave early because I would fade out (get too tired or hurt too much). I did go into this depression on just wanting to lay on the couch with the blanket over my head. But, watching music videos all day and night wasn't all that healthy on me or my muscles...but, I did love watching the bass playersf & their techniques! Figured, why not try to learn to play the bass. Which is why I have.
So, if you know of someone who is ill with something like Lupus, but they look fine. Don't assume they are OK and just looking for attention. They may really be ill. Just support them and let them know its OK to have a bad day, week, or month. But that you support them and there will be good days ahead. I, personally, have been judged pretty harshly, during times I couldn't get off the couch, or when I couldn't go out and do fun stuff.....people would say mean things to me like I am lazy, or I should "buck up"!!! No one knows better than ME how much I wanted to! I tried to do those things, and I became sicker because of it. Now I take care of myself.
With anything, whether it is lupus, depression, just a bad day or whatever....just be kind and supportive. Don't try and "fix" the person....because you can't. But you can love them where they are at, and proceed on with each day and have good times in the midst of an illness that would rather you live a life of pain and suffering. SO, in 2009, be good to each other!!! :)

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