One Step Forward, Twenty Steps Back

I don't know how to express my frustration and outrage at the irresponsibility of the young woman that represented Oklahoma at the Miss USA Pageant. She is young, had a very specific goal in mind (I don't know what her goal is now since she came in runner up in the pageant), and worse - she a conservative, Fox News-watching Christian.

Let me clarify a few things first: I believe in a Universal, almighty Higher Power (we've been over this before, folks). I believe in miracles, although claiming them as God's miracles on a public stage can be a really tricky thing - God has a really weird sense of humor. I believe in the right of everyone to be wrong - especially young people - and to be forgiven for it. I believe that everyone should take responsibility for the things they say. I believe that information is power. I believe that the truth will set you free, and I believe to the bottom of my soul that Fox News is an instrument of the devil.

As I have already pointed out, this young lady is VERY young. She relatively recently won Miss Teen Oklahoma in order to run for Miss Oklahoma. So she can't be much more than 18 or so, I guess. Nineteen? I don't know, YOU Google it. My point is that she doesn't know what life is all about yet. She doesn't know one HAS to be accurate when referring to things on a national stage. And she certainly has no idea how mean and nasty people are, and how long people's memories are - LIKE THE ENTIRE LUPUS COMMUNITY. I mean it - I have NEVER seen outrage like this. These people want blood, and I'm not far behind them in my thinking. This has set our cause back by 20 years.

We had finally gained some respect through the TV show "House" ("It's NEVER Lupus!", a phrase Dr. House frequently says on the Fox (!) television series, is a HUGE rally cry for lupus patients now; the meaning behind it being clear to lupus patients at least: Lupus is the last thing anyone thinks of to use as a diagnosis because it is the disease of a thousand disguises). We had gained more recognition and understanding through multiple episodes on soap operas, nighttime shows like ER, Law & Order, L.A. Law, just to name a few. Garth Brooks had even written a song in memory of a friend that have passed over (sorry - my way of saying died) because of it. We had even won some higher profile supporters which is difficult for lupus. There are plenty of Hollywood stars with lupus but they cannot make their medical status public (unlike with some other diseases) due to the complications with insurance coverage. When you work on a film or television show you are required to have insurance coverage, and you can't get coverage if you have a diagnosis of systemic lupus. It's the "curse of death" in the life insurance industry. I have an uncle in the insurance business, and he wouldn't even write ME an insurance policy. OUCH!

For a kid the age of twenty (or so) to come along and proclaim that she has been CURED of lupus and is a walking miracle because God willed it that way is a near catastrophe for lupus sufferers. It has probably hurt us more than the denial by Social Security that "lupus is a disabling disease" EVER did. We finally got Social Security straightened out, and we now get disability retirement fairly easily (which I have been on for years). But the way I understand it, this woman said that her lupus was brought about by taking a drug, one of several that can bring about lupus symptoms. This is called "Drug-induced Lupus". When the drug is discontinued it does not always reverse the lupus symptoms, so she is, indeed, lucky that the symptoms went away when she discontinued the medication. BUT DISCONTINUING A DRUG IS NOT A MIRACLE. IT IS ALSO NOT A CURE, since there was no real disease to begin with. I am SPEECHLESS at the twisting of the truth for self-promotion and sympathy. I'm sure we have all stretched the truth for sympathy, and possibly even for self-promotion. But either this girl, or someone that is "handling" her and giving her advice, is doing a great disservice. By her putting drug-induced lupus in the same breath with "miracle" and "cure" she has confused fact for fancy, and taken on an entire nation of lupus patients - INCLUDING THE LUPUS PATIENTS THAT FULLY BELIEVE IN MIRACULOUS CURES, AS I DO. She needs to retract her statements and replace them with real, scientific and medical facts, stated clearly for all to hear so that the public doesn't think us lupus invalids are sitting around collecting disability and dying because it's so much fun. There is already too much of a credibility gap when it comes to lupus.

There is a HUGE credibility gap when people can't see you bleeding to death and you are low on blood (YES, THIS IS A REAL CIRCUMSTANCE; the body "eats", for lack of a better term, your blood and then you must have a transfusion to live). There is a HUGE credibility gap when your husband carries you into the Emergency Room and you're crying out in pain but after six hours of tests the doctors "can't find anything wrong" with you. There is a HUGE credibility gap when, on a Friday, you feel like you are on your death bed and can't go to work. Then on the next day - Saturday - you feel great and need something at the store, so you go out and run into your boss at the check out. There is a HUGE credibility gap when you tell your friend you'll meet her in Cozumel, so you both buy tickets to Cozumel and a week at the best hotel, then you wind up too sick to make the trip with her. There's an even BIGGER credibility gap when HUNDREDS of people who have worked and toiled alongside you, and called you "friend" for over eight years see you forcibly retired, knowing that you have some crazy illness that they don't understand so it scares them to death, and they NEVER, EVER speak to you again.

This is what lupus patients are up against; well, it is what I have been up against. These are just some of the things my soul is scarred with. These are just the run of the mill, everyday things. Hurtful and devastating emotionally, but nothing compared to the physical toll. I'm not even going there, because it's just too hard for others to understand and too complicated to try to explain. I don't want to sound mean, I just simply don't know how to explain it. How do you explain the confusion of slowly slipping into a coma? How do you explain pain and exhaustion to someone that just feels "normal" pain and exhaustion? I still remember "normal" exhaustion. Sometimes I still HAVE normal exhaustion. LOL I pray for those days. Those are my good days. I am grateful for those days. I work very hard to have those days and fortunately, for me, that's what most of them are. I'm lucky. So many people aren't that lucky. So many of my friends never made it as far as I have. I don't know why I made it and they didn't; why I got better and they died. But I know I have to make sure that this disease is understood and respected for what it is and for what it is not. It cannot be turned into a misunderstood soundbite from a girl who wants it to fit into her agenda of furthering her career. None of us with lupus are going to allow that to happen. Only over our dead, cold bodies.