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View Full Version : DO YOU THINK LUPUS WOULD GET MORE ATTENTION IF IT HIT MEN



MARYCAIN
09-01-2006, 08:24 AM
AS OFTEN AS IT DOES WOMEN? Not that I'm a cynic about the drug industry (laugh), but if this disease primarily affected men, don't you think they would be trying harder to find a cure. Apparently lupus isn't as interesting as ice-cream sundaesif we go by Good Morning Anerica's priorities. Just wondering, if the drug companies spent as much time developing drugs for lupus as they do for ED, would they have a cure by now.

atedj
09-01-2006, 08:53 AM
I think that it would get more attention if Lupus affected mainly men. Has anyone else noticed that when men are sick or in pain they complain alot? Us women, we just hold it in, suffer in silence alot. We don't complain. At least I know that's how it is in MY house. When my husband is sick or hurt, he spend the entire day in bed, whining. Then there is me, trying to run the house and take care of the kids while I'm sick. "Suck it up," I tell myself. It's not like I can call into work sick! Life just doesn't seem fair for us, does it? (Sorry, I'll get off my soapbox now!)

beautifulbeluga
09-01-2006, 09:19 AM
I don't know if that is true of all men Atedj or just yours, cound you be over generalizing just a bit? My husband was very ill this winter, started having major joint pain, lost over 20 lbs, exhausted and finally came down with this horrible head pain that was with him day and night. He looked like hell and never complained. He got up and went to work every day, continued to look after me without even so much as a peep and did most of the cooking and cleaning. I was really worried about him and had to hog tie him to get him to the doctor, well actually 3 doctors. He was dx. finally with Giant Cell Arthritis and put on a very high dose of prednisone. Now his is fine and still never complains. Not a single peep about the effects of prednisone. So, you see I have to disagree with you.

beautifulbeluga

SoleSinger
09-01-2006, 11:22 AM
I know it isn't true of ALL men... But, a LOT of men do complain a lot when they are sick... especially with something silly like a cold...

I think that Diane Sawyer should be ashamed, frankly...

I am actually thinking of writing a letter to GMA and ABC about that... a 6 minute piece on a major illness in between what turned into 30 minutes of talking about ice cream!!!! Journalistic integrity, my... patootie!!!

MARYCAIN
09-01-2006, 11:33 AM
I didn't intend my original post to suggest men complain more - just that the medical profession and the drug companies don't always give the same attention to women's health issues as men's. The major drug companies spend millions developing new drugs to treat erectile dysfunction in men because it's a money maker for them while a million plus children die every year from malaria, tb and other treatable diseases because no medicines are available, because there's no profit in developing cheap new drugs to treat them.

I think too often women are overlooked by the medical profession because they don't take us seriously. If a 40 year old man shows up in a ER complaining of chest pain and shortness of breath, he will 99% of the time be given an EKG and cardiac workup - this happens in less than 40% of cases where a woman has similar symptoms. Not just ranting here; unfortunately this has been documented in numerous medical studies. Which is why women have to take charge of their own health care and not be afraid to ask questions.

atedj
09-01-2006, 12:57 PM
Sorry didn't mean to get into men-bashing. Definately wasn't my intention. I think I was just grumpy this morning :wink: But I really do think that women tend to hold things in more. I heard a statistic once that a higher percentage of women die of heart attacks than men because they tend to ignore warning signs while men will go to the doctor for a check-up. Why do we do that?

pinkjmf
09-01-2006, 01:00 PM
YOU GO SOLE SINGER, WE WILL BACK YOU!!!!!!!

SoleSinger
09-01-2006, 01:55 PM
Sorry didn't mean to get into men-bashing. Definately wasn't my intention. I think I was just grumpy this morning :wink: But I really do think that women tend to hold things in more. I heard a statistic once that a higher percentage of women die of heart attacks than men because they tend to ignore warning signs while men will go to the doctor for a check-up. Why do we do that?

I think it's a variety of things... We tend to be caregivers, so when something happens to US we feel like we should be able to handle it and still take care of everyone else, too. I also think that even though it isn't the 50's anymore and we aren't TAUGHT to be this way as much, there is still something inside of every woman that says "Don't complain". No matter how woman's lib you are, I think it's still there. I also think that in addition to that voice, since it isn't the 50's anymore, we tend to try and prove ourselves more, because we HAVE always been seen as weaker, so we don't say anything to appear stronger.

Also, I'm not so sure that men go to the doctor more on their own, I think we women, as caregivers, tend to push men more to go.

I think that each and every woman, no matter how liberated, and no matter how much we try and fight it, I think we all have a little bit of that woman from the dark ages inside of us who doen't speak unless spoken to. And I'm not sure if it's an instinct, or if it's something that has been learned, even now in our "enlightened" age... But I do believe that underneath everything it is still there... At least a little bit.

SoleSinger
09-01-2006, 01:56 PM
YOU GO SOLE SINGER, WE WILL BACK YOU!!!!!!!

YAY!! You know, I think if enough of us sent an email or a letter about the audacity of that piece, that something might be done about it!

JenHa55
09-01-2006, 06:03 PM
I really, really do NOT think Lupus would get more money or attention if it affected men more than women. I actually think, for one, we don't have a beloved spokesperson that is famous and well liked. That is something that people, unfortunately seem to respond to. And also, it is such a difficult and confusing disease that people just don't understand. We haven't been represented in the media or otherwise so people don't tune it.

That's just what I believe. We need a spokesperson, someone well known and well liked. Not JUST Billy Bob Thorton's first wife... and with much respect to her and she really has done her part to get the word out there, but we need someone currently famous.

beautifulbeluga
09-02-2006, 07:18 AM
I agree and I think that bit of a segment was a very poor attempt to do so. In another post Mrs M wondered why the spokesperson didn't look/represent what many lupus patients look like. If you remember they introduced this woman as a past model and actor (they remarked she had done some bit part in something). She is not Michael J. Fox but it sounds like they are looking .......someone high profile and in the meantime that woman they used is probably the best they have, hence the emphasis on her past modeling and acting.

America loves the beautiful and no one is interested in looking at anything else, (the answer to Mrs. M's post before & question why they didn't use someone who was.............(looked like they were ill). Lets face it folks the media prints/shows/talks about what sells. Life threatening diseases like lupus dosen't sell, but ice cream does. There are many life threatening diseases out there that can't get a dime for research and sick people all over the world are dropping like flies. Thank God at least we have some treatments available to us but not a cure. The medical profession and especially the pharmacetical companies (I can't spell today) do not want to cure anything otherwise where would the money come from!!!!!!!!!!! No more fat bank accounts?

SoleSinger
09-02-2006, 10:16 AM
I don't know how true that is... When was the last time you heard of a case of the measels? Mumps? Polio? Even chicken pox is pretty rare nowadays... I'm not so sure they are against finding a cure, but they sure do like to take their sweet time in doing so.

Bama
09-02-2006, 11:17 AM
Kelly Martin (from life goes on) - her sister died of Lupus and has been outspoken about Lupus.

http://www.kellie.com/articles/lupus.html

Also, I've heard that the government ends up directing their research dollars to the most popular health issues that veterans face and that most of the research is done on veterans in VA hospitals. Since there are so many more male verterans - disease that mainly affect women get over looked by federal dollars.

peach224
09-02-2006, 02:29 PM
Well, let's think about this....how many women who know now that they have lupus (or some other autoimmune disease), and spent a year or more finding that out, got the label of "chronic complainer" before their dx? I know I did, from more than one doctor! And my research indicates that is fairly common. Or the set of symptoms gets lumped into a mysterious category called "women's problems" (like anything that is mysteriously wrong with us has to do with our menstrual cycle) and you get sent to a psyche. That happened to me too. For six months I thought I had bipolar disorder and anxiety attacks. A psyche doctor saw me twice a month and I was on six heavy duty medications for depression and anxiety, I was a zombie, and still didn't feel any better physically, but I went along with it because I was desperate for something, anything, to work.

Now, how often do you hear about men being labeled "chronic complainers"? Almost never! (I read medical reports every day for my job, and believe me, men never get labeled complainers or "malingerers"). And I have never heard of "men's problems". Funny how that works isn't it. I think the matter of all autoimmune diseases might get more attention if it was more evenly spread to affect men and women.

browneyedgirl53
09-02-2006, 06:04 PM
Okay, I already forgot who started this conversation; but ladies - ladies, please - I personally am offended that the statement "if men were affected more equally, this disease would get more attention". I understand that we ALL get frustrated and need to vent - but vent that "gender" stuff somewhere else PLEASE - we ALL are suffering and the last time I looked, gender wasn't driving the pain bus - I guarantee you that!

Having lost a couple of men friends to lupus, I wanted to throw-up when I read some of these remarks. My friends hurt, they cried, they wondered why, just like you and I do....in fact, they even asked "how did I get this, I'm a man?" This disease is not getting attention because more women have it than men! It's not getting attention, because there hasn't been an effort great enough yet to "air this in public" as often as other diseases.....that's all!!

Ladies, I will say that in my opinion, this has not been one of the finer conversations on this site. There are some outrageously awesome men that share this space as well; including our own St. James. I bet he would love to see this conversation go in a different direction.

I share my thoughts with you respectfully.

Much love,
Browneyedgirl

SoleSinger
09-02-2006, 06:21 PM
Well, that, and look at all the attention that breast cancer gets!! And how many men have breast cancer and never get recognition?? But, then again, look at all the cancers that DON'T get recognition??? I don't understand how it works that some diseases get attention and others don't but I think it's stupid.

browneyedgirl53
09-02-2006, 06:29 PM
MONEY, DARLING....it's what motivates some and is necessary for others.
Some of the organizations have very "deep" financial pockets, with funding coming from drug companies as sponsors, medical foundations, etc.

It certainly isn't fair, and sometimes life sucks that way. As I mentioned in the GMA post, it's up to us...every single one of us to make some noise. It can happen, and I believe it will happen.

Okay, NOW I'm going out for that ice-cream (smile).

Much love,
Browneyedgirl

yaya
09-02-2006, 07:47 PM
I have a wonderful husband but he does tend to be a bit "needy" when he does feel well; however, he is extremely nuturing when I don't feel well. I like to think that it will be a women that cures all of the ills of the world because we're "cool like that"! As for going to the ER, on one occassion I went in with a mirgraine that I just could not tolerate until I could see my own dr. The ER doc (male) told be to go home and "drink a couple of glass of wine and try to relax", that women often have "unexplained headaches and pains" and the source of my headaches would probably never found. Then, years later, I had a dr (male) tell me that other than hypothyroidism I was overstressed because my profession as an accountant was a "male dominated" career field and I needed to "get in touch the more feminine side" of my personality. He suggested that I learn to do "arts and crafts" or something. Years later a female dr dx'd my lupus; hence, my belief that "It takes a women!!!!" All of my docs are female. This was not a deliberate situation it just worked out that way; but I couldn't the happier I have wonderful docs and for now it works for me.

I know that when I really feel bad I just want to feel better whatever that takes and female doctors seem to be better at actually hearing what is important to the situation at hand.

Quarterhorsegal
09-02-2006, 08:27 PM
Ahhhhh, I love a good debate. Problem is I am not sure which side to take on this one. I would have to agree that in the past men's diseases were investigated more. This had a lot to do with the fact that test groups were for the most part comprised of men. Because of this, even for the diseases that affected women too, the results of the research were not applicable to women because all of the tests were done on men. Fortunately, this is not the case today. We can all be guinea pigs now :) . Unfortuenately it is also true that pharmaceutical companies are businesses with stockholders and bottom lines. You can bet that if treating or cureing lupus was monitarily favorable, we would undoubtedly get more attention. On the lighter side, anyone want to guess what ailment probably makes the most money for the drug companies? The common cold? It is probably up there, but my bet goes to..... constipation. Cure that and they all go broke :D

browneyedgirl53
09-02-2006, 09:19 PM
OH quarterhosegal,

GREAT COMEBACK !!!! I think I'll throw my hat in the ring for this one, and guess, headaches!! I wish I had the time to research this one; but I will tell you MARYCAIN, is our Research Guru.....I bet she would know.

As we were prepping for surgery, a heart surgeon that I worked for told me that the man who invented aspirin, would probably be the richest main in the world. If I remember correctly, he invented it - but didn't patent it (I think that's how the story goes).....help me out here Marycain (smile).

Any other takers on this guess?????

Thanks for the nice laugh quarterhorsegal!!!

Much love,
Browneyedgirl

SoleSinger
09-02-2006, 09:39 PM
Okay. so here's my question... Why do drug companies and so forth support some organizations as opposed to others? I mean, you would think that something that effect so many people would get the same backing as anything else, wouldn't you?

browneyedgirl53
09-03-2006, 05:38 AM
I'm sure that someone here who knows more about the political process of a lobbyist could tell you the finer details. My small, in fact, tiny knowledge of the process is almost embarrassing.

From what I understand, that drug company lobbyist are always, always looking for money. Alot of money comes from the lobbyist who goes after the most willing ear and the deepest pockets to fund their company's research; in return whoever contributes are at times awarded "favors", etc. While there are outstanding and honest lobbyists out to do the right thing; I think overall that the few "bad apples" have made it difficult for most folks to view them with a favorable eye. There is definitely a lot more to this process than I have knowledge of. I do know, that teaching hospitals who do a lot of "investigational research" receive a lot of funding from drug companies. Why some disease more than others? I hate to say it, but MONEY...and I suppose money (smile).

I hope someone with a lot more understanding and knowledge of this process will jump in and help us out with this conversation.

I am so glad you ask questions Solesinger, it forces us all to think more.

Take Care Songbird,

Much love,
Browneyedgirl

MARYCAIN
09-03-2006, 10:00 AM
I am the culprit who originally started the topic thread - didn't mean it to turn into an invitation for male-bashing. I certainly don't mean to suggest that men are not also affected by these diseases - you are right that pain is an equal opportunity employer. In some ways it is even harder for men because it is considered a woman's disease - just as some men develop breast cancer.

But, unfortunately, we do need to talk about gender bias because it exists, and the best way to confront a problem is to deal with it openly. I'm not trying to push a feminist agenda here. This isn't about men vs, women or who whines more - those are trivial in comparison to the reality that many women and men are coping with today. But even the National Institutes of Health has recognized that gender bias exists in health care, even when the providers aren't consciously aware of it. How can we ever deal with this problem if we don't talk about it, or even acknowledge that it is a problem, without turning it into some kind of peeing contest between men and women. (pardon my indelicate language here).

Part of the problem is that lupus and other auto-immune diseases often affect women of child bearing age, and federal regulations prohibit women of child-bearing age from participating in federally-funded drug studies unless they are surgically sterile. Many private drug companies have similar restrictions because of the fear of birth defects. It's certainly a legitimate concern, but it makes it a lot harder to develop new drugs when the group most often affected can't be included in the drug trials. Since the drug companies are ultimately for-profit companies, they often turn their attention to conditions which are easier to research.

Another problem is that common diseases often present differently in women, and doctors and the women themselves don't know this. A man having a heart attack may have the classic symptoms of crushing chest pain and pressure, shortness of breath,and radiating pain, which a doctor can easily recognize as a probable heart attack. A woman, however, might feel extreme fatigue, nausea, or a backache, or pain in her chin or jaw with no chest pain at all. Same heart attack, different symptoms. This is part of the reason why first heart attacks are often fatal in women - the problem isn't recognized until it's too late.

Bias is ultimately about making assumptions - which we've all been guilty of doing on occasion. The problem is sometimes those assumptions harden into preconceptions and sterotypes, and they influence us more than we realize. The same is certainly true in the medical profession. Many of us have experienced it first hand. A friend of mine suffered for years with horrible abdominal pains which her doctors blamed on menstrual problems - it wasn't until she collapsed down in Tennessee and was taken to a large hospital that she was finally diagnosed with sickle cell disease, which the local doctors never even thought about because she wasn't black. They never thought about the fact that people of Cajun ancestry also carry the sickle cell gene.

I'm sorry if this topic hurt anyone's feelings - I certainly didn't intend to stir up any kind of controversy or gender debate. But I firmly believe that women need to empower themselves in their own medical care and health decisions, and the way we do that is through knowledge. We have to educate ourselves, and our doctors, and sometimes that means talking about uncomfortable topics.

Browneyedgirl - hope this explains why I originally brought up the topic. I'm sorry it upset you so much - that was certainly never my intention.

peach224
09-03-2006, 10:08 AM
I want to throw in my apology here too, because I seem to have been misunderstood. I wasn't "male bashing" by any stretch of the imagination and I am truly sorry if that was how it was taken. I would never want to downplay or degrade the men who suffer with Lupus right along with the rest of us. It is certainly not the patients' faults that the doctors and the research companies don't pay as much attention as they always should. By no means did I intend to say that the men as patients have any say over their doctors' opinions or how they act.

Again, very sorry.

MARYCAIN
09-03-2006, 11:47 AM
According to a study done by Mosbys in 2003, the most commonly prescribed generic drug is acetaminophen hydrocodone, also known as tylenol 3. The most commonly prescribed brand name drug is Lipitor. So I guess it's a tie between pain and high cholesterol. Amoxicillin, synthroid, and lasix round out the top five.

The most common reason for visits to a primary care doctor is cough - so I guess the common cold deserves honorable mention. Other top reasons include backache, upper respiratory infection, fatigue, high blood pressure, and diabetes. This is based on a survey done by the American Academy of Family Practice Physicians, so it may not be a
representative study.

The same survey also found that office visits lasted six minutes on average, and over 60% of patients 45 or younger were given 2 or more
prescriptions. In patients 45 or older, the percentage was closer to 80%. Kind of makes you think, doesn't it.

As for our old friend aspirin, it actually was a patented drug at one time (Acetyl Salicylic Acid - Patent Number(s) 644,077). The original patent was issued to Felix Hoffman, a chemist with the Bayer
Company, in the late 1890s, so he is considered the inventor of aspirin. But most historians think he actually built on the work of some French and German chemists who had distilled the chemical decades before, but hadn't figured out a way to buffer the acidity so it could be taken safely.

Although a chemist gets the credit, herbalists and folk healers had known for generations that willow bark tea (which contains salicylic acid) could be used to help pain. Hippocrates, the Greek physician
who lived 400 years before Christ, recommended willow bark tea for arthritis. So the pills may only be a century old, but the idea goes back a lot further.

Okay, that's my medical trivia for the day.

browneyedgirl53
09-03-2006, 12:04 PM
APOLOGIES ACCEPTED, AND HUGS ALL AROUND THE ROOM !! I love that everyone feels comfortable sharing - I suppose it's such a trigger point for me - because I know and understand what all of you are saying. I was a single working mother who had to make her way in this world.....I learned quickly you can either choose to gain respect by demanding it; or commanding it - by living to the moral code that makes you at peace with who you are and it makes others want to know "what is it about that person, that commands such respect?". It's the way we carry ourselves in our everyday walk, it's how we talk to one another with admiration and respect; confronting issues with a vision and goal to contribute towards a positive and peaceful resolution. Of course, that's not always the case (not even in fairy tales).

As a woman who grew up in Texas, I can still remember going to school when whites sat on one side of the room, blacks on the other; white kids would eat lunch first...and blacks to follow. In the third grade....in the third grade; my heart knew this was not the way to treat people...ever! I will never understand as long as I live, why such injustices were ever allowed to go further than a passing thought. It breaks my heart.

God didn't make our hearts a different color, and I believe that our spirits take on no other form but of love or hate. My mother grew up in the South (Georgia); and I suppose I have a very deep seated feeling of angst about any kind of prejudice. Perhaps I am more sensitive than most, but I do know this, my love for people is not about the color of their skin, the size of their bank account; or by gender; I love because at the core of who we all are - are people who want only to be loved and accepted for WHO we are, not what we are.

I'm sure you've guessed by now, I was a teenager when race riots were the talk of the day (late 50's & thru early 70's; when "women libbers" were the brave warriors of the time; and can still remember when Rosa Parks had the courage to step on a bus-because she knew in her heart; she was human - not colored, she was human and she had the God-given right to ride that bus.

I think the best in us rises up when we can recognize a situation and choose to address it in a manner that states our concerns without taking the road that leads to such conflict.

I honestly didn't mean for this to turn into a sermon....it has not always been easy for me to live with this tender heart in such a crazy mixed up world. Please know that my only hope in mentioning anything, was to invite you to higher road. You're right Marycain, there are injustices of all kinds everywhere, I guess in my mind - I would love to see that this place could be a "nurturing, accepting, and safe place" for us to bring our hearts and share our burdens. Dad blam it, I can't even type this without crying......let my find the keyboard again!!

I have such great admiration for all the incredibly wise and wonderful contributions all of you have made. I am still in awe that the concept of this website was someone's dream, and that someone made it happen in her daughter's honor. We're here, let's be thankful, let's love and let yesterday be gone and done...all is forgiven.

You are my brothers and sisters, closer bonds do we share than some of us share with our own families.

Sincerely, I mean it when I say:

Much love,
Browneyedgirl

p.s. and now I've gone into that ugly cry, nose runnin', red face, can't catch my breath cry. I do have such a deep caring heart for you all.

MARYCAIN
09-03-2006, 01:06 PM
"Remember that everyone you meet is afraid of something, loves something, and has lost something”

That was what she would always tell me when I was a kid and shy about meeting new people. I guess it's still good advice today.

Like you, I'm old enough to remember segregation, although it officially ended while I was in grade school, the repercussions lasted for years. I grew up in Alabama and have vivid memories of the governor calling out the National Guard to orevent young black children from entering schools. That shame is a black mark on our nation's history that has never really been erased.

One of my strongest memories is when the 16th Street Baptist Church was bombed in Birmingham. I was about the same age as the four little girls who died that day. My mom went to a florist and bought four white roses then drove into Birmingham (we lived about 20 miles away) to lay them on the rubble. I still remember a little black patent leather shoe somewhere in the rubble, and thinking I had a pair just like them. I think that was the moment when it really came home to me that the only difference between those little girls and me was I would get to grow up and they wouldn't.

Growing up in the deep south was interesting because my mom was kind of a social activist. My dad wasn't interested in politics or social issues he judged people strictly by their work ethic; if you were a good worker that was enough for him. He had a coal mining company which was completely integrated because it never dawned on him that it could be anything else -

My mom, on the other hand, was very outspoken - she had experienced poverty and discrimation firsthand (her father died when she was seven; she wasn't welcome in many places as a child because she was half-indian, in those days "half-breeds" were as unwelcome as blacks in the South). She quit a Baptist Women's group because they wouldn't allow a black woman to join - she told the "ladies" that instead of raising money to send missionaries to Africa they should send them to Alabama, because the Baptists needed saving worse than the africans did. It didn't make her very popular, but it's still one of my best memories.

So I do understand and respect your dream - I hope some day it comes true for everyone.

browneyedgirl53
09-03-2006, 01:35 PM
What a beautiful, meaningful and true statement that is that your mother shared. I will remember that always. Your mother sounds like a hero. Thank you so much for sharing your thoughts, memories, and advice. Man, I don't know why I can't stop crying (drip, drip).

You are wonderful to share. I appreciate you so much.

Now, I need to go blow my nose, wash my face...and have a day. I think this chemo is wearing me out, and I'm feelin' sick and tired of being sick and tired. You are such a blessing to us. Thank you for your kind words.

Much love,
Browneyedgirl

Quarterhorsegal
09-03-2006, 02:12 PM
I love this thread!
Marycain, you have great information! The most commonly prescribed drugs vary year to year ( obviously ) and it is interesting to see what they are. These do not include the Over-The-Counter (OTC) products that do not require a prescription. One small correction in the interest of accuracy. Acetaminophen/hydrocodone is the generic combination for a variety of brand name products depending on the strength of each drug and the dose form ( capsule or tablet ). Some of the brand names are Norco, lortab, Vicodin, and Bancap. Tylenol #3 is acetaminophen/codeine combination. It is also availabe in a variety of strengths ie tylenol #2, and tylenol #4. The # indicates how much codeine the product contains. Hydrocdone is a synthetic product, codeine is not. Arrggg, did I just slip into drug teaching? Sorry, force of habit. :roll: Anyway, keep that wonderful information coming. :D :D

MARYCAIN
09-03-2006, 02:23 PM
I was thinking lortab and typed tylenol3, probably because I'd just taken a couple, so it was still in my brain. Sometimes what I'm thinking and what I'm typing get short-circuited and it comes out gibberish. I try to proofread but don't always catch everything. Glad you caught that one.

browneyedgirl53
09-03-2006, 03:57 PM
THANKS FOR RACIN' RIGHT IN ON THIS THRED QUARTERHORSEGAL - IT'S ALL GOOD....CONVERSATION, DRUGS, AND WHATEVER COMES THIS WAY.

THANKS QUARTERHORSEGAL AND MARYCAIN FOR SO MUCH INFORMATION. I AM COMPLETELY AND TOTALLY IMPRESSED!!!

Marycain, I'm equally as guilty of not doing the spell check before I hit "send". Sometimes I wish there were a "thought check" before I hit that "send" button (smile).

Signing Off - for now,

Much love,
Browneyedgirl

Saysusie
09-05-2006, 12:39 PM
Ok... I am finally going to chime in and reiterate what I stated earlier. We need an advocate!! I do not care if that advocate is a male or a female, as long as they are willing to get out there and tell the truth. The whole UGLY truth about this disease.
Let's not forget how AIDS was so profoundly misunderstood and how those who were diagnosed with the disease were also looked upon as drug users or gay/lesbians and therefore, thought not to be as valued as a clean-cut heterosexual. Now, haven't we come a long way from there?? Why? because some of our most respected and revered members of society died from AIDS and as a result, that disease garnered many, many advocates. It is a shame that this is what it takes and I hope that it does not come to this in order to have an advocate for us.
Now, about inequities in treatment and value as a human being....I am a BLACK WOMAN with an ancestry replete with being treated less than human....need I say more!!!!
This is not the place to delve into those types of discussions (as Browneyed girl has stated). Here is where we offer kindness, support, comfort, ACCEPTANCE, information and UNDERSTANDING to EVERYONE!!
If we want things to change, WE GO OUT THERE AND TRY TO MAKE THE CHANGES!!! If it is important to us that we get substantial air time for LUPUS, then let's go out there and see what WE CAN DO to make that happen!! IT DOES NOT MATTER WHO GETS MORE ATTENTION OR WHY!!! WE ARE GOING TO TAKE STEPS TO SEE TO IT THAT LUPUS GETS THE ATTENTION THAT IT NEEDS!! That is our goal. Let us spend our time, energy and focus on how we can make that happen...ok????
Now, here is what I demand on this forum...RESPECT FOR EACH AND EVERY MEMBER REGARDLESS OF RACE, COLOR, SEX, SEXUAL ORIENTATION, RELIGION, or ORIGIN.
So far, no one here has violated this. But, let's keep this in mind as a reminder when posting on these forums.
Unfortunately, I hold discretion on weather or not I feels this has been violated and I will boot anyone whom I feel has done so. So, please, let's keep our focus and try not to get angry with one another and let's go about the business of making changes and being advocates for this disease, offering support and comfort for EVERYONE who has the disease and putting aside any prejudices!

Peace and Blessings
Saysusie

stjames13
09-09-2006, 12:33 PM
8)
PART OF THE REASON I AM HERE OTHER THAN BEING FRIENDS WITH SUZIE IS TO BRING A MAN"S POINT OF VIEW TO THE QUESTIONS AND TO ANSWER QUESTIONS ABOUT LUPUS TO THE MEN WHO COME>

IF YOU THINK THERE IS NOTHING OUT THERE FOR WOMEN TRY GETTING HELP AS A MAN !!!!!!

LUPUS SEES NO COLOR<NO RELEGION<NO SEXUAL ORIENTATION<
NO AGE> NO FINANCIAL STATUS>IT DOES NOT PICK ON DRUG USERS PAST OR PRESENT....this is what makes it so incidious.

Than you BROWNEYED GIRL FOR STANDING UP FOR US MEN....as ther are alot of us who suffer from other afflictions like POST TRUMATIC STRESS DISORDER FROM BEING IN VIET NAMN, WE GWET LIVER DISEASES MORE THAN WOMEN and WE TEND TO GET LUNG DISEASE"S EASIER BECAUSE OF THE WORK WE DO AND I CAN NOT REMEMBER THE LAST WOMAN I HEARD OF WITH TESTICULAR CANCER< NOT TO MENTION THAT MEN ARE MORE PRONE TO HAVING HEART ATTACKS THEN WOMEN AND IT IS A FACT THAT WE DO NOT LIVE AS LONG AS WOMEN DO>>>>>SO PLEASE CAN WE KEEP ON THE SUBJECT OF NOT ENOUGH FUNDING FOR LUPUS AND NOT WHO IT HURTS MORE>

WHEN IT HIT A MOTHER<FATHER<SON OR DAUGHTER...THE WHOLE FAMILY SUFFERS!!!!!!!!

Only what 1 out of 1,000 women get it, well only 1 out of 10,000 men get it and the chances of getting BOTH SLE AND DISCOID are HIGHER than hitting the PICK 6 !!!!!!!!!!

What we need is some BIG POLOTICIAN or BILL GATES"S WIFE OR SOMEONE LIKE MICHAEL J FOX TO GET IT FOR THEM TO START REALLY LOOKING FOR A CURE.

SADLY THAT IS THE TRUTH !!!!!!

The money we HAVE SPENT IN IRAQ killing our KIDS and other inncocent other people has reached the amount that would FEED<CLOTHE AND SEND TO COLLEGE "EVERY: HOMELESS person in the ENTIRE USA !!!!!

NO THERE"S A WASTE OF MONEY !!!!!!! and in 2007 the BUSH admin and what's left of it is lowering the amount of miney they spend on reseaching diseases like LUPUS !!!!!!!

STJAMES :evil: :twisted: :mad: 8)

browneyedgirl53
09-09-2006, 03:37 PM
Hi St. James,

I've been wondering about you - I haven't seen your posts for a while and started to get worried. I hope you're feeling better (whatever form that takes, right?). My heart goes out to you, and my hope is that you find some relief soon.

After my friend's husband left this planet and onward to his next journey - I have thought about - how long this disease lasts and how extremely complicated it is. It will take an absolute hero who can be our "spokesperson"....I guess in my mind why I think it is so hard to bring this out to the public; is that it is such an incredibly difficult disease to diagnose/treat/and describe to people. I did love how Dr. Manzi (sp) from the Good Morning America show described lupus; that each patient is like a snowflake - each one is unique and has their own symptoms
and treatments.

My hope is that if we all make enough noise - our someday to have that representative will be in our lifetime (and yes, I do drive the hope wagon :wink: !! So good to hear from you. HOW'S THAT MUSIC COMIN' ALONG ????

Take care, friend.

Much love,
Browneyedgirl

I've been wanting to say 'THANK YOU' - for being here. You are right, this disease is an equal opportunity offender- it discrimates not in who it strikes. I really have thought how difficult post-traumatic-stress disorder is to live with. I have suffered from it myself, for different reasons of course. You feel like you're at war everyday - trying to be on guard and act like you're not - and when memories come crashing into the middle of your day.......and it takes you by surprise, heart pounding...and that incredible rush of flight or fright rushes in. It is a burden that so few can relate to.

stjames13
09-10-2006, 06:20 AM
:wink:
THANKS BROWNEYED GIRL....nad MARYCAIN
It reminds me of that VAN MORRISON SONG "MY BROWN EYED GIRL" whenever I see your name.....It's a beautifull song.

Thank you for understanding what us MEN deal with as well as having LUPUS,NIGHTMARES that scare you to death, already I have had to beat LIVER CANCER due to being in NAMN and the government turned me down for disability after 6 years of fighting for it as they said when I was there they did not spray AGENT ORANGE,....

They didn't have to it was in the water, all the crops and meat, and the HEP "C" we got from doing graveyeard registration ...which is when we go back to battlefields and pick up the dead, some only in parts to send them HOME....

NOT a nce job for a 17 yo kid to have to see or do.
ANd try to get a DOCTOR to take a MALE seriously when they say they have LUPUS SYMPTOMS....

The only way they confirmed it was by me going to a ROBERT WOODS FOUNDATION while they were treating my liver.

I was told ONLY WOMEN get it, IT's all in your head, until one intern took the ball and ran with it and confirmed it and all the other myriad of
auto-immune problems I have which I am fairly sure alot came from being in that DANG WAR !!!!

Did ya know that 55,000 died in that was but over 175,000 commited suicide since coming home and THOUSANDS are homeless...real nice way to treat the men who took the ultimate chance for this country.......

I am proud to have done my job as a MARINE to the best of my ability but had I known what I know now about that war I would have NEVER gone !!!
WE were just kids and now we are THROW AWAY MEN !!!!

Alot of us suffer from all kinds of diseases they say don;t exsist,but they are there so how could they NOT EXSIST ?????

I saw many a young man (KID) die and then had to bag them in blue plastic and send them home to ther mom's...
To this day I can see some of there faces......but the VA says we're all faking it.

Look at all the KIDS coming home from IRAQ with all kinds of nerve problems but our LIEING GOVERNMENT WILL NOT admit that IRAQ used nerve gas on those kids.

Did you here this one.....a kid was sent to IRAQ......he was not given BODY ARMOUR so his parents paid for it and sent it to him and it is not cheap....
When he died they took it and gave it to another (kid)TARGET and they had the nerve to CHARGE him for it!!!!!
THAT'S right they are charging our KIDS for body armour while we re-build IRAQ.

AND this story made me sick another kid who got killed stepping on a land mine....well it destroyed his body armour.....the ARMY sent his family a BILL for the unusable body armour....2 days after they received the letter that their son was KIA !!!!

I'm sorry I am rambling.........
Please people WE MUST UNITE FOR AS THEY SAY UNITED WE ARE STRONG AND CAN STAND UP AND BE HEARD but if we get into this women/man BS we have no chance of ever getting anyone to re-search LUPUS.

You are BOTH such kind souls THANK YOU FOR THINKING ABOUT ME

STJAMES :wink: :cry:

BTW thanks for asking my music is going a bit slow now due to that major relapse and the other BAD news, but hey I am into the BLUES so living like this keeps me filled with lyrics and ideas!!!!!

Saysusie
09-10-2006, 10:49 AM
James;
As usual (and as always) you put things in perspective for ALL OF US!! I am with you 100% on not putting a gender on this disease (as you and Browneyed girl have said, Lupus is not gender-biased, nor is it based on color!!). As you said, the problem is not who gets the disease, the problem is funding to find a cure and the bureaucracy that we must deal with in order to get help. The same bureaucracy that denies that our heros (like you) have no illnesses as a result of the horrors of war!! And I believe you when you say that, as far as Lupus is concerned, men get much more of the "It's All In Your Head" dismissal from the medical field than women do (since, as you say, many believe that Lupus is a women's disease!). You, my friend, are very important to me and to this site and, once again, you have shown us how much we need you and how important you are! You are a credit to us just as you have been a credit to this country. You keep me centered and never let me forget what the true issues are. Thank You...Thank You....Thank You!!!!
Like you and Browneyed, I too suffer from my own form of post-traumatic stress. I awake in the night crying and screaming and wishing that I were dead instead!! There are so many more issues that are so much more important than who gets Lupus and, as always, you have made us look at each and every one of them.
There is so much that each and every one of us has had to suffer with that it is not our place to judge any one of us!! My mother always had a saying that I have tried to live by:
"There is so much bad in the best of us
And so much good in the worst of us
That it hardly behooves any of us
To talk about the rest of us!"

THANK YOU FOR BEING YOU AND FOR BEING MY FRIEND.. I TRULY HONOR THAT!

Always
Saysusie

browneyedgirl53
09-10-2006, 07:21 PM
There is absolutely no question in my mind, God's hands have guided you two to meet, to become friends; and to serve nations of hurting people. Think about it St. James, would you have ever dreamt that God would bring you this far....to have done so much more than you ever dreamed of? It's people like you and Saysusie that keep thousands, and soon to be tens of thousands of people connected; through caring, sharing and lifting each other up. What a mighty work God had in store for you two.

I wish I knew my scripture and books better, but it says somewhere in the Bible that for any person who toils in tears here on earth, will be rewarded richly with joy....and God is faithful and forever endures. He did indeed pick the perfect two people to make this dream happen and as well to keep it alive for so many of us to benefit from. We had a preacher who used to say; "if you wonderin' what's goin' on....remember that you gotta get the message, before you the blessin' !!!! I know, there are so many here who are waiting for their crowns of glory for all of their long suffering.

Thank you both, for keeping us encouraged, for hanging on and being strong. You BOTH are heros to oh so many.

Much love,
Browneyedgirl

MARYCAIN
09-10-2006, 07:27 PM
My two oldest brothers (I have seven) were both drafted and served in Vietnam - one was captured during his third tour of duty. He was tortured and mutilated but eventually freed as part of a prisoner swap. I was too young to remember much about it, except that my mom cried a lot, but I do know that the men who came home were not the same people who left. They both have ongoing health problems - my oldest brother has discoid lupus and disease of the liver and pancreas, and his daughter was born with birth defects which I've always believed were due to his chemical exposure. So I understand what it's like to live with someone who has PTSD - you must be an incredibly strong person to have survived your experiences.

Please share more about your music - I play several traditional instruments but enjoy most syles of music (except German opera!)

browneyedgirl53
09-10-2006, 07:37 PM
I'm ALLERGIC to any opera :lol: :lol: :lol: :lol: :lol: !! Speaking of blessings, Marycain....you are amazing; what you endure every day and yet you still research and pound away to find answers for us.

Well, my mom is flying in from New Mexico Tuesday, and I've got a house that needs some serious TLC.

Much love,
Browneyedgirl

Saysusie
09-11-2006, 02:42 AM
Thank You Browneyedgirl :lol:
I feel truly blessed to be able to share this site with people who have actually become my guiding stars: People like you and St. James. Everyone here has become my strength and my light (and that is truly from my heart). For as much as you feel I am doing for others, I feel that you have done twice as much for me!! You are an Angel with a intuitive and sensitive soul.
St. James is my rock! And, he rocks!! :lol:
So, I have to say that, yes, God had his hand in there when he brought Conrad into my life (the only producer who understood my vision for the CD I did in honor of my daughter) and put it on his heart to suggest and offer this site to me. From there, I've met wonderful people like you and St. James, and MaryCain and HatLady and Solesinger (I could go on and on) and we meet new people from all over the world almost daily. That is a blessing that continues to unfold and I am so grateful that it does!!
So, THANK YOU SO VERY, VERY MUCH!!

Peace and Blessings
Saysusie

stjames13
09-11-2006, 05:01 AM
8)
I AM SO HAPPY TO HEAR THAT WE ARE ALL ONE AGAIN.....and from this MAN"S point of view THANK YOU For thinking about it and understanding that we too suffer teribley and are just as open to most of the same afflictions as women are and the ones we are not able to contract well, ther are many other out there thatwe can get that women can;t/

ALL APOLOGIES ACCEPTED

REMEMBER THAT UNITED WE HAVE A STRONG VOICE BUT DIVIDED WE HAVE NOTHING BUT CHAOS AND ANOMOSITY.

I LOVE YOU ALL AND WISH YOU ALL THEBEST IN LIFE AND GOOD HEALTH

STJAMES :wink: