A friend of mine from Facebook, and a fellow lupus sufferer, wrote an inspiring, passionate, humble, beautiful... well, why don't I let you read it for yourself. Thank you, Norma Jeane Smith, for letting me share your thoughts on my blog.
"I do not ever want to take away from anyone suffering from cancer. It is a serious disease...but has the potential of being cured. To me...and I mean NO offense...I feel that Lupus is a little like cancer...without any cure. It has a potential remission...but not a potential cure. It is frustrating, hurtful, and horribly disgusting how dismissive people can be until you die from it. I have never, as a nurse, seen so little regard for a disease, that mistakenly attacks and destroys its own body, no rhyme or reason or method to its madness. It attacks an organ, or several in most of our cases...like it attacks a virus. It hurts us until there is nothing left...everyday. As destructive as the disease is, people that doubt the seriousness of Lupus should try and spend a moment in the shoes of the one they doubt. Lupus sufferers should not have to prove the suffering...do not want it...nor should they have to have a visible sign/tumor to be seen outwardly in order to be believed. John said something wonderfully honest...that being those that believe you do...and those that don't won't. It isn't something you can just tough out until it is healed...it is NOT a bruise or a cold. It is the attack of our bodies on themselves for no known reason and it does not go away...Air can not be seen, but you know it is there...if you doubt it...take it away and I bet you will believe it was real. Lupus is like air, except we wish it were absent...unlike air. If anyone should doubt it, let them carry it for a moment. Not something I wish for them to have happen...but I do not know how else to create the compassion we deserve. Alzheimer's, Multiple Sclerosis, Diabetes, Thyroid issues, Crohn's Disease...to name a few...are also autoimmune diseases that others may have. Dismissing someone with Lupus or any other Autoimmune Disease just because you do not understand it, see it, know enough about it is inexcusable. How dare anyone who has ever breathed air that can not be seen by their own eyes...decide for someone else they are not truly ill because they can not feel or see within the person they have dismissed. To that person, or anyone else that feel Lupus is not real...Please imagine yourself without air for a few moments...struggling to convince the ones around you that you really can't breathe as they doubt you because they are able to breath with ease. You can not outwardly see asthma, autism, a heart attack, a headache, a cold virus, a toothache...so many things great and small that aren't even autoimmune related...but when it is YOUR's to carry, you will know it is real. I promise you this...if anyone was going to fake anything...I am certain it would not be Lupus...or anything that Prednisone is drug of choice! And if you aren't sure what that means...Like a funny joke that has to be explained...take it for a few months and get back with the ones you doubted because explaining it takes away from the punch line it packs! You can not fool blood work and specific labs, fake seizures, strokes, kidney failure, heart failure, hair loss, facial scarring and rashes, inflammation of joints and muscles, just to list some common things you would be attempting...just saying...it is SO ignorant to disbelieve, doubt, or dismiss someone for what you do not understand first hand. I can't SEE your ignorance...but I know it is there. We may die before you believe it, acknowledge it, etc. That is your choice and your right. You may HOPE that it will be dropped if you pretend we don't exist, or ignore us like some have tried with slavery, the Holocaust, or other tragedies in time. But remember this from your history lessons...one voice may be easy to silence...divided...you could continue on your way...united...you can not. We will educate you or we will expose you...gain your choice...but OUR right! As the men and women before us have found in all struggles of life...When they came together to fight for the very right to freedom, to vote, to be equal, to be heard...have done before us...we will do as well. It may even be that you have helped us in our plight to be recognized by your ignorance. It may be that you just want your name to be known. But you have messed with the wrong crowd...I pray you truly never know first hand how real Lupus is. I also pray you first think before you speak or plan on your name/face being synonymous with the words ignorant idiot...All our love, or all our might...you choose, but you are taking one tough crowd."
Sunday, May 23, 2010
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.
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.
Saturday, May 22, 2010
Save the Manatees, Save the Mermaids
I finally did it! I got my "Causes" page up and running on Facebook! It, of course, is all about Manatees. With more than one person thinking I've lost it with moving to Florida to work with manatees I figured I'd better put my actions where all my money is going. I've done a great job, if I do say so myself. I have made my beneficiary the Save the Manatee Club. I hope they don't mind. HAHAHAHAHA! That organization is as poor as church mice! I thought at first I'd make the Endangered Species Coalition the beneficiary, but they are so about the "popular" animals, and my manatees are not very popular. They are the ugly step-children of the endangered species world. And I SO KNOW how that feels, so Save the Manatee it is.
I'm sending invites to every single person on my friend list. It looked like there were some articles on the home page of "Causes" on how to get the word out on one's cause so when I get some time, or when I get to Florida (whichever comes first), I'll read those and see what they have to say. I'm sure they can help.
Not a bad morning's work, I'd say. I think I'll go see what other trouble I can get into. :)
I'm sending invites to every single person on my friend list. It looked like there were some articles on the home page of "Causes" on how to get the word out on one's cause so when I get some time, or when I get to Florida (whichever comes first), I'll read those and see what they have to say. I'm sure they can help.
Not a bad morning's work, I'd say. I think I'll go see what other trouble I can get into. :)
Thursday, May 20, 2010
What can I live without?
This pending move to Florida is changing my perspective on a lot of things. The entire time I have lived in this particular apartment I have been downsizing. My Feng Shui project motivated me to get rid of clothes, knick-knacks that no longer held any meaning, many kitchen gadgets, books, records, tapes, linens, SCADS of things. My move to Florida has encouraged me to take another look at what I don't use anymore.
I sat on the couch last night and looked around and started pointing out things I haven't used since I moved in here. My cassette player, more knick-knacks, one of my file cabinets, some of my placemats and napkins, candles, some dishes and cookware... so many things that I can easily live without. And having lost all the weight I have I can surely get rid of more clothes.
The book, "Gift from the Sea" by Anne Morrow Lindbergh is a good read to get in the mood to purge belongings. The wife of Charles Lindbergh, and the mother of one of the most famous kidnapped babies in the world... talk about someone who had to get used to "living without" something! Loss and abandonment have always been two of my big issues. They still are, in many ways. But how great it is when I can sit down and look around and make a list of things I am going to get rid of. "Things" are not going to make me safe, or happy, or whatever it is I think I need to be. If I lose my "things" I am not going to die, or become less of a person - although there are those that think I will. As long as I love myself, validate myself, and stand up for myself I don't need much else. If I do all those things for myself there won't be any holes in my soul that I will need to fill with "stuff". The hole will be filled by the love I give myself.
What can I live without? Almost anything. Hell - almost everything! I will still want people in my life; people are a big part of what life is about. We're talking about THINGS, here. STUFF. America is stuck on consumption. I can't help but think if America were more spiritual (not religious) we would be such a better nation. But this is crossing into another subject, and another blog for another time.
I sat on the couch last night and looked around and started pointing out things I haven't used since I moved in here. My cassette player, more knick-knacks, one of my file cabinets, some of my placemats and napkins, candles, some dishes and cookware... so many things that I can easily live without. And having lost all the weight I have I can surely get rid of more clothes.
The book, "Gift from the Sea" by Anne Morrow Lindbergh is a good read to get in the mood to purge belongings. The wife of Charles Lindbergh, and the mother of one of the most famous kidnapped babies in the world... talk about someone who had to get used to "living without" something! Loss and abandonment have always been two of my big issues. They still are, in many ways. But how great it is when I can sit down and look around and make a list of things I am going to get rid of. "Things" are not going to make me safe, or happy, or whatever it is I think I need to be. If I lose my "things" I am not going to die, or become less of a person - although there are those that think I will. As long as I love myself, validate myself, and stand up for myself I don't need much else. If I do all those things for myself there won't be any holes in my soul that I will need to fill with "stuff". The hole will be filled by the love I give myself.
What can I live without? Almost anything. Hell - almost everything! I will still want people in my life; people are a big part of what life is about. We're talking about THINGS, here. STUFF. America is stuck on consumption. I can't help but think if America were more spiritual (not religious) we would be such a better nation. But this is crossing into another subject, and another blog for another time.
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