Beginning Once Again...

As I begin this journey, or rather I say continue this journey, I am embarking upon a new "raging river" per se'. I have posted, blogged, written on Face Book, had my own MSN and Yahoo sites and groups, running the entire gamut of the latest and greatest in the realms of communicating with other "like-minded individuals". Yet, it is NOT the "latest and greatest" that brings me to do this new challenge. It is a desire to reach out to you, the audience, with my own very personal powers of what has ailed me off and on for many years. Years before I even knew what "chronic illness and pain" were...definitely well before the majority of us knew one thing about Lupus, Rheumatoid Arthritis, Degenerative Joint and Disc Disease, Fibromyalgia, Chronic Fatigue Syndrome and even MS (Multiple Sclerosis) was an illness we really new very little about. I can recall the very first time I ever heard of anyone that I knew having Lupus. She was back then a girl I had went to high school with, and she was a couple of grades ahead of me. She married a local "home town" boy, and they were making life, with home and family. When I was in my mid twenties, possibly a bit older, I had heard about "Kim" having the chronic, incurable disease of Lupus. There was so little known about this disease at that time, other than there was NO CURE for it, and basically it was a death sentence back then. Even the world of Medical Professionals had really not figured out what was going on, other than the body was actually attacking its own self, from skin, to internal organs, heart, brain, kidneys, lungs, and more.... there were no real tests to find out for sure if Lupus was a correct "diagnosis". At that time the very distinctive symptoms are what gave doctors a clue as to if you had this disease since some of the are often vague, and others very specific to the Lupus illness. The "Wolf's mask" or what now is known as a "Mylar Rash" is probably the most distinctive symptom of Lupus. IT has a very definite look, feel, and way it comes on, so that in itself is a very good hint into whether Lupus is the correct diagnosis or not. Then there are the much more vague symptoms, which are more "ongoing flu like" in nature. Extreme fatigue, other unexplained rashes on the hands, feet, legs, low grade fever that lingers on with the other symptoms, a severe "migraine type" headache, aching joints and muscles, usually several of them over the body, often an almost "allergic reaction" to being in the sun causing the facial rash to be much worse, changes in weight and appetite (loss), problems with hair falling out, swollen lymph nodes under in the throat, inflammation of blood vessels (Vasculitis), swelling of hands and/or feet, Raynaud's phenomenon which is caused when vessels in the fingers and toes seem to not get enough oxygen to the small  causing then to turn blue, and almost feel as if they are frost bitten, very cold and tingling or burning. Anemia can be another symptoms of Lupus also.

Thus, as you can see, there are a variety of symptoms that could be associated with any number of illnesses, some possibly serious, and others a mild 24 hour flu. The "markings" of the "Mask" happens to be one of the most prevalent of signs of Lupus. Since there are two types of Lupus, one that involves strictly the skin, (Cutaneous Lupus) and the other that can effect everything from skin to internal organs which is called "SLE" (Systemic lupus erythematosus), both can have this particular hallmark feature of the disease. Lupus is a chronic illness that at this time has no cure. Over the past 2 years although, there has been extensive research yielding new medications that are on the market to help Lupus Patients. I will get into more about these new medications in a later blog post.

The Realms within Creative People - The Dark side?

Down a couple of lines I posted about the"Dark Side of Creativity"... but not because I feel creative people are more dishonest, I feel creativity, high intelligence, etc... people with these gifts in many ways do show an "oddity" that surrounds them, much more than others. Anyone, that paints, plays music, writes, is a very deep thinker, has an aptitude to be genius, etc. more over shows to have emotions, and deep seated realms that usually give them the talents they have. I can say that will all honesty because with my creative talents come also very at times a darkness that evolves within me. Those are the times that my writing is at its best. Although it does not mean what I write is "dark or evil", actually it is usually just the opposite of being filled with horror etc. But if you look at people like DeVinci, writers like Twain, William Blake, Silva Plath (who wrote dark also), Tom Robbins, songwriters such as Kristofferson, Willie Nelson - often seem to not "fit in" socially among some, many of our singers, actors, actresses, bands and band members (who have even some killed themselves) like Jim Morrison... Within the realms of the artistic nature, are some things that some may deem as evil, but that is what makes that person the creative artist they are... of course that does not mean just because we are writers, poets, song writers, musicians, painters, and so forth, we are going to knock our self off... just that many of us find ourselves not "fitting in" at times with the what is ever considered the "norm" for society. We tend to be almost anti-social, kind of rebellious, not going for what "normal is"... which is a good thing...

Valentine's Day and Celebrating my Birthday Tomorrow

Lots of things are going on this week. Some of them are good, for a change. We are celebrating Valentine's Day today, and I was almost a Valentine's baby, since my birthday is tomorrow. We went to the casino in OK yesterday to celebrate both events. We have been going to Winstar lately, in Thackersville, OK, rather than making the longer trip to Bossier City, LA. The drive to OK is not nearly as long. You can be there with light traffic in about an hour and a half or so. Where as the trip to Bossier - Shreveport is more than almost 3 hours, depending on traffic. I thought about staying overnight, but after all day there, and then the line for the buffet being hours long all day long, I with my blisters on my feet after not thinking to put socks on over my hose since my thigh high boots are a little big, my feet are really hurting. The price I usually pay for even a day trip the next day or so. I am sore all over, worn out, and feel drained. But, with the Lupus, Sjogren's, Raynauds and other immune issues that is typically what happens. Never the less, the trip was good. I had a great time!!! I think all of us won a little, or at least won enough that we broke even. I have not counted up yet, but I think I may have won a little over what I took. That is a good thing. There were a couple of machines I got on later in the afternoon that I won two of the small jackpots on. One was like about 45.00 and the other 20.00 or so, then I won several of the bonus rounds, which one was 35.00 and then several of the 10.00 and 20.00 bonus rounds.
Being Valentine's day and everyone talking about it on Facebook, made me think about how the day is celebrated around the world in different countries. Interestingly enough, many other countries do celebrate the day for "lover's" when I did a Google search on it. They do some of the same things we do, and some do other really awesome things also.

I have a couple of links I will post with this to see how others celebrate.
http://www.novareinna.com/festive/valworld.html

http://en.wikipedia.org/wiki/Valentine%27s_Day

It is really interesting to know so many share in this day for lovers. :) I also thought about the vintage Valentine Day cards that my Dad has back from when he was a young boy in elementary school. He kept a couple of his cards from back then, and they are so delicate and ornate. Back then they were truly spectacular, with almost a lacy dye cut look to them. I looked up some on Google and never thought about them being antique, but they have to be around 80 years old. Dad would have been 88 I believe this month, on Ground Hog Day, and he got these when he was fairly young in school, so I know they have to be about that old. I need to get them and put them in my cedar chest for safekeeping to hand down to my kids for them to keep also.

I can remember all of the years that this week meant snow skiing in either Santa Fe, NM or in Pagosa Springs CO! Each year for the week of my birthday, we went snow skiing. That was our vacation and celebration of my birthday. Also, the tradition of my birthday cake is a heart shaped red velvet cake. My Mom has made one just about for every birthday I have ever celebrated. Probably other than the few years I spent in Seattle she has kept that tradition from my very first birthday. :) I have always looked forward to that cake each year. It became a tradition that I truly enjoyed. :)

Since my 50th birthday last year was not so pleasant, with me actually not just in the hospital, but in surgery for my birthday in 2010, it was very important that this one be special... almost extra special. I hope never again to spend my birthday or any day that ill, and on the edge of being not even here again. It was a scary time in our lives that I pray never is repeated.

I wish all a wondrous Valentine's Day also.

Weather, Winter, Cold & A first for many in Texas!

As we endured a wondrous balmy 70 degrees last weekend, as of Monday we went to freezing ice, and now temperatures well below freezing with wind chills at 3 degrees and even down below ZERO! It is not a pretty picture as we watch the idiots in Dallas on the freeways. They decided the roads were good enough to go, and they are quickly finding out the bridges and overpasses are covered in black ice as 18 wheelers, along with cars and trucks slip and slide all over into ditches, and stuck over the medians. It is wild. We also shall not even see temperatures above freezing until probably Saturday. We are under a very hard freeze warning, along with a wind chill warning, and expectation of more ice and snow on Thursday and Friday. It is far from what we saw this past weekend. Of course we are also looking to endure state wide of rolling black outs from Oncor. We can possibly expect our lights to go out for anywhere from 15 minutes to an hour per our local news channels. People are calling in and reporting they have been without power for more than an hour. We do not have enough power to carry the entire state of TX, since even down at Brownsville is right at the freezing level.
Our other huge ordeal is the fact that we have the Super Bowl in Dallas in the new stadium on Sunday, which is a huge thing for Dallas and the Metroplex area. It appears we will have "nice" weather and be in the upper 50's by Sunday for the game! I guess most will consider that a heat wave on Sunday since our temps are at about 16 degrees here, with a wind chill of 3!!!!

I can honestly say of all the years of living in TX, I never have seen it get this cold, with these wind chills. Or at least not in our area around Dallas. It does get very, very cold in Amarillo and the panhandle. I have been in Amarillo in February when the wind chills had to be very well below zero! That wind would cut through you like a knife! by the time you got out of the car, and got into the bathroom, you were almost too cold to even think about peeing!

We are looking at possibly more snow and sleet on Friday! Snow, oh yes, it is so pretty and so awesome in the late evening when everything is so quiet!!!

So as today would have been my Dad's 88th birthday, and the ground hog saw no shadow thus we should get an early Spring time coming.

Hard to believe Dad has been gone now for 6 years....

It's been awhile! I am here and hopefully back

Well, I never thought it would be so long before I got to my blog again, that I might not be able to find it! alas, here it is the New Year, ringing in the pain pump now in place, and the medication almost where it needs to be dosage wise. Of course I realize I will never be completely free of pain. But, compared to oral pills, and all else endured for far too many years for the chronic illnesses and pain, I would highly suggest a pain pump to anyone who was in my place, or many are already worse. It is quite a lengthy process to just get to the place of having a "trial" time. Fortunately for me, I went in thinking I was going in for my trial, but due to my doctor already having known me for over 5 years, treating me, and knowing my total history, they already had the pump approved, and at the hospital in November a couple of weeks before Thanksgiving. I made my decision on the gurney while waiting for the OR room to be set up. Actually, we had figured as much due to what the nurses had told me while they prepared me for the surgery. Sure enough my personal representative from Medtronic was there to get me ready as far as understanding the entire situation. My doctor was more than ready to go right on and put it in, rather than have to do a trial, then in a day or two, re-admit me, and then do the surgery. So, since I was already ready to get this thing started, as the song goes, I went in and came out with yet another hunk of metal in my body. This one hopefully like the knee replacements that shall give me tremendous relief from the far too many years of chronic, daily pain. The kind of pain that has ruled over my life for at least 15 years, and that I have tried everything known to man, woman and alien to help me. The list is endless of doctors, therapies, medications, physical therapy, magnets, rubs, TENS units, injections in my various joints and back, way too many CT and MRI scans and enough Xrays that I should have an eternal green glow at night!
 The number of doctors I have seen was too large to count on fingers and toes! From over the counter remedies, to anti-seizure medications, to NSAIDS, and narcotics... the list of pills are endless also.The day I shall always feel lives in infamy for me, is the day I was visiting my current pain specialist and his words were "time to think about a pain pump!" I almost hugged him! Five years ago, when I first went to him, it was because my still PCP had already suggested highly it was more than time for a pain pump for me.

I was signing papers, watching DVD's, reading everything online I could find, and just trying to hurry up the process. It took of course getting insurance approval, then several visits of talking about it, telling me about the first part, which was a psyche evaluation, that was truly more due to insurance, than my doctor. But, I had it done, and was ready for the next step. Well, by the time his nurse got all done with my insurance, they had basically said there was no need for a trial on me, and go ahead!

Now I had a couple of small setbacks, the first of which was one of the horrible "spinal" headaches that is caused by having a lumbar puncture not seal up as it should, thus the loss of spinal fluid messes up the balance, and the headache in sues.  Of course I developed the damned thing on the Saturday, after coming home on Friday from the hospital! We basically knew the issue, and after calling my doctor, we did have to make a trip to the ER to get my severe nausea and vomiting stopped and then I was told to drink as much caffeine as possible. For some strange reason for many, a spinal headache can be stopped with enough caffeine. I went back to Dallas the following Tuesday, still with the headache, but it was somewhat better than the weekend. They scheduled me for what is called a "blood patch" to seal it off, but said if I continued to get better, and was careful, I may not even need the patch. Thus true, I did everything I was told, and it sealed on its own. A couple of weeks later, I began to feel a knot coming up on my back by my spine, where the incision is for the catheter that was put in to the pump and then attached into my spine. come to find out, it is a fluid buildup that does happen, and it is called a seroma. Luckily, it will finally go away on its own since it stopped growing and began showing signs of going down. We did not want to take a chance to drain it and cause a possible infection.

Thus even with those two minor issues, and then the weekly trips to Dallas to my pain specialist for weeks and weeks, we have finally about gotten my dosage of medication in the pump where it needs to be.

I went in yesterday, and he refilled it, with a higher concentration of medication, which means not having to go as often for it to be refilled! I have already seen so much getting better... no more side effects from the oral medications, it is a relief not to worry about those pills, making sure I take them right, making sure I fill them when i needed to and so forth. I was a little bent out of shape because the pump shows a little with my shirt off. But, that I was told would happen due to my slender waist. And I surely am not going to put on any weight, so it will just have to stay showing and turn into a conversation starte...LOL, probably.
I am thrilled to be back online, and hope that with this pump life gets a great deal better this year. I still have hurdles to jump, but this year one huge one I have cleared hopefully for a long time to come.

Well Tomorrow is the Day

Well, as the old saying goes, don't ask for what you don't expect! I was thinking the ordeal with the pain pump was at least a week away from yesterday. I had called the hospital and they told me I was scheduled for the first trial procedure on the 16th, so that was next Tuesday.
Well, we went to the market, got home and was putting up groceries, and I got a call from my pain doctors nurse. They got everything approved and set, and now TOMORROW is the day for the pump "trial". I had been hoping they would get it done earlier than next week, because I did not want to be in the hospital or just getting out on Thanksgiving. Thus that probably means if the pain pump is already coming to the hospital the doctor will probably have me come back in early next week (I know Tuesdays are a day he does procedures) and I will actually have the surgery next week. I am not positive, but he did tell me he does not wait long, that if the trial goes well, he sends me home, only to turn around and come back very soon. Plus it appears he will be right, and I will be through before Thanksgiving. I will still very much be getting over surgery, and not able to do much of anything.
I have to encourage myself about the issues of NOT OVERDOING when I come home. I have a friend on Face Book that had a pump put in about 5 weeks ago or so. She was doing fine, but she must have overdone too quickly. She began having swelling about 10 to 15 days after the surgery around the pump itself. When she went back in for her recheck the catheter they felt was leaking, thus it meant going back in to fix it. Sure enough, when they redone surgery, it had been pulled loose. Thus more than likely she pushed, strained, pulled, or overdone too quickly, before the catheter had time to really anchor in where it is stitched etc. and it was pulled loose. She has already had the corrective surgery, and is back home recuperating once again. But, it is a good reminder for me, NOT to do what I should NOT when I get home. I have a tendency to get restless, and want to get up and do something. But, I have already pledged to myself and my husband I would NOT go there. Amy, my friend on FB, is a good reminder of what could happen if I don't do exactly as I am supposed to.
I have already gotten my crotchet stuff out and have thread enough to begin a new afghan. I also found some brand new color books and colors I had bought a couple of years ago for my grand kids for one Christmas when we thought they would be here on Xmas day. LOL, I thought I might color. Plus I have my IPad, of which is going with me to the hospital Jim has already set it up where I can connect to my computer here at home, and do my email etc. I am not sure if the hospital has wireless for their patients, but we are going to get a months' service through AT & T if not, so I can connect to the internet.
I am honestly extremely nervous!! I know I have had more than time to think this over, have had all of my doctors tell me this is a great thing and so forth, but of course, even with all of that, I realize this is another surgery, and I will now have another "foreign device" in my body. I already have both knees that are titanium, screws in my left elbow, clips in my right shoulder, and will eventually have titanium in that shoulder also. Thus here is another piece of metal that will be inside of me. That is not such a huge thing, but just the thought of it, is kind of weird feeling.
Everything I have read, everyone I have talked to, etc. all is positive for the most part. They say my pain will diminish a great deal more, with lots less medication! Plus I won't suffer the side effects of taking the medications orally, like stomach upset, constipation, and so forth. Of course as with any kind of procedure, there are things for instance, such as Amy's catheter pulling out of place that can happen. But all in all, everything shows a great success on these new pumps. We shall see. I have waited a very long time to get as much control as possible over the pain, without being knocked out, thus this is the ultimate way to get it. Also, I have to remind myself, if for any reason, it needs to be taken out, it can fully be removed with no problems. So, I have to remember as "permanent" as it seems, it can always be removed.
Lots floating through my head this morning... please keep me in your thoughts and prayers, also Jim and my Mom and kids. We have not told Mom. Amanda or Jason yet that it has been moved up until tomorrow. I decided to wait until later today to let them know. They worry enough as it is.

Hugs to all... more later, Rhia

Texas Republicans Wrong on So Many Levels

It is totally too early on Sunday morning for me to be this livid or even to be writing about something so serious, but after reading the headline in the New York Times (I noticed I COULD NOT find this in any TX newspaper when I did a search), that I have to sound off!

The headline reads "Texas Considers Medicaid Withdrawal"! Actually the original article came from the "Texas Tribune" of which I have never heard of, but made headlines this morning in the New York Times. 


In the first place, I voted. So I will just get that off my chest. As I always say, if you take the time to keep up with the political scene, and you take the time to go vote, then you are owed the right to bitch if you don't like something. Thus, I feel I have more than my right to say just how screwed up Texas politics are on so many levels. We should never have allowed this jackass Perry back into our Governor's position. He is a greedy, uncaring, loud mouth, who showed his ass, when he made the statement about Texas "seceeding" from the rest of the states. That should have been enough to send all to the voting booth with a huge Hell NO written in by his name. This guy is nuts. Medicaid keeps those that are in desperate need medical attention. Well, it helps a few. For the most part, it helps single Moms with kids. Rather than be taking it out, it needs to include families and the disabled that need additional medical help. 
This is not just about helping the poor anymore. It is about many, many (Texas rates the highest of those without medical insurance coverage) Texans that simply live from paycheck to paycheck, and cannot pay their mortgage, feed and clothe their children, send them to college, pay their bills, and afford the ever growing costs of medical insurance. Someone making 40,000.00 a year with a family, can't have 400.00 plus lots more taken from their already dwindling paychecks on pay day. 
What about the family that has a Grandmother living on Social Security and she suddenly is not able to be taken care of at home? After Medicare pays, and her supplement pays, then it suddenly runs down to all being gone, who is going to pay 1,000.00 a day for nursing home care? 
What about people that have lots their jobs, and are having to try and make ends meet on unemployment? Do you think they should not have medical coverage, when it is no fault of their own they don't have a job?

All Kinds of Things Going on personally and in our nation.

Many of you probably had your eyes glued to your television sets yesterday, much like my husband and myself did. We were going to take a break, and eat a quick "brunch", as we began to hear the news on CNN. At that time we had not had the opportunity to read any of the breaking news, but it was evident that something potentially bad was happening in several of our airports. As we began to listen to the events unfold, it was an extremely familiar reminder of September 11, 2001. Possible explosives headed for Chicago. Planes possibly carrying packages with explosives in them. Several airports under alert, and also at least 2 airports, one in the UK, and another in Dubai, effected by all of this. It was such a reminder of the morning of 9/11, when the world was glued at that time to their televisions, radios, and anywhere they could to get the latest about airplanes running into the World Trade Center towers in New York, as other ones were a seeming threat to the White House, and also to the Pentagon, as another crashed into that building. It was a living night terror, surreal and just to the point of some of us wondering if it was a huge hoax, kind of like HG Wells, and the alien trick played so many years ago, before television was even invented. It was a huge story line, and his book depicted the "events" in such a manner in a journalistic format, which made the story unfold as if it were real.

Of course, yesterdays events unfolded and all of us knew it was not some elaborate hoax, but was a very real situation. One that now has left us with many unanswered questions. Some we may never know answers to. Others due to the extreme nature of needing to be top secret, the government I am sure is not disclosing, just due to not wanting information to get into the wrong hands.
We are asking things such as why these particular packages were headed from Yemen to the US? Where they actually "explosives" completely set up and designed to be detonated? Were they "pieces" of an explosive device or devices, that were to go into the hands of someone who were put them together and later use them as a bomb plot against us? Is there a further "agenda" by those terrorists involved to watch how we handle the situation, and they are readying themselves for another attack? Is it a test of our Homeland Security, a test of our nations airports, a test of just how capable we are to handle another massive attack? Where they truly meant to explode at a specific location, at a specific time? Or was this just a decoy while they decide their next terrorist move against our country and many other of our allies. We already know these people despise our nation and our people. We already know that many are willing and ready to sacrifice their own lives in the name of religious beliefs, and die for that cause.

Did our "intelligence" work? Did our tactics put in place since 9/11 take care of such a horrendous situation such as 9/11? Are we as individuals and as a whole nation on alert enough, do we have security in the proper places enough, are we watching closely enough to be fully prepared for another night mare such as that fateful September day? My thoughts are that out of the millions of bits of information that are gathered on any given day right here in our nation, along with many other nations, that we have to be doing an incredible job of thwarting these plots. Of course as individuals not in the government agencies, we do not know just how many potential bits of information lead to nothing, or lead to a plausible situation in which we do act upon to stop such a horrific event from taking place again on our own soil. Yet, it is mind boggling between what takes place on the internet daily, the millions of emails, posts, websites, blogs, and such alone that you have to wonder how we could catch such things as the possibility of attacks again. Then you have all types of other ways to communicate, to be mobile, to be around the world in a matter of hours now. We are such a mobile community, with cell phones, computers, fast traveling air planes, the railroad, cars, the wireless internet where you have "hot spots" all over this country and the world now for that matter, than can be used to send information immediately, without any lapse time. Even you just consider UPS, FEDEX, and all of the other ways packages can travel from one continent to the other in a matter of even a day, and that does not include by ships, 18 wheelers, the postal service, etc. that at any one time something can be shipped from somewhere in the middle of nowhere, and be sitting in our of our nations huge city's in a matter of hours. Needless to say when you really sit down and think about the reality of how our Homeland Security Dept. as well as our law enforcement, our several other intelligence agencies, and even us as watchful citizens can be able to intercept such items well before they reach where they are meant to do nothing but harm us, maim us, scare us... all in the name of their own teroristic nature.

It also brings to mind the whole bullying thing that has been in the spot light now for weeks. It just blows my mind to think we are raising young kids that are already developing a hateful nature when it comes to their peers. We know that "teasing" has gone on forever in schools, and anywhere children are in groups. From the time we were all in school, we usually had one or two kids who were trouble makers, and deemed as "bullies" in our schools. Yet, then a "bully" certainly was not the connotation of what we mean as bullies these days. I cannot fathom young kids making such a mockery of their own peers that it causes such a horrific problem for the tortured child, that they even remotely think about wanting to kill themselves. I recall being "teased" and it was not funny at all. I was a bit overweight during my teen years, and I endured some name calling, etc. due to my weight. Until this day some of that does haunt me. Even though I took the weight off just after graduating high school, until this day when I look in the mirror, I see that chubby high school student, and it puts a damper on how I feel, and my self esteem. Some of it caused my own issues with how I feel about my body, how I feel about even gaining a pound, and how I present myself in public... all of it at times stems from those days of being called names in school.

Yet, now, it is far from being the typical name calling about being overweight. These kids are being fully attacked about all aspects of their lies. The hateful and bitterness witnessed today among our youth, is not just a tease but full blown hate crimes in many ways. When you are verbally, mentally, emotionally, and physically attacked by those that should be your allies, those that are supposed to be your peers, it hurts more than just a name calling event.

My question is why this is happening? Where are these kids learning to be so incredibly hateful, mean, and showing no compassion, no decency, no manners, no feelings for those around them. Is this something they see all too often or even taught at home? Is this stemming from lack of parental control, lack of family life being what it used to be, from what they see on video games, hear in music, read in books, see on television, and witness by others where youth are. We definitely as a nation, as schools, as youth events, as parents, teachers and the like need to get a grip on these events. There needs to be punishment, education, and ways that these kinds of happenings are put to bed for good. These kinds of actions can only lead to adults that are going to be more hateful and more apt to hate crimes, if something is not done to stop these kids.

It is an ongoing battle that certainly needs to have attention and prevention done. The answers are probably not all black and white, but shades of gray as to how to handle these events, how to give our kids more self esteem, more empathy, more respect, and more morality. That has to come from home first, then from teachers, pastors, and all adults that are around our nations kids. Respect is something that seems to have been thrown out of teaching. Respect is something that needs to be definitely brought back, for both children and also for many adults.

News about Lupus and other AI diseases - New Trials

A new nationwide research initiative has been launched to define changes in the human immune system's response to infection and vaccination using human rather than animal models, which could lead to better vaccines and other treatments. Baylor Research Institute (BRI), along with five other U.S.-based Human Immune Phenotyping Centers, will receive a total of $100 million over five years to conduct the research.

Funding is provided by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, which has previously provided BRI funding for other projects, including HIV research, lupus research and developing a flu vaccine.

Investigators will analyze samples from well-characterized groups, such as children, the elderly, and people with autoimmune diseases - for example, lupus. These groups represent diverse populations with respect to age, genetics, gender and ethnicity. The research teams will examine immune system elements of these populations before and after exposure to naturally acquired infections or vaccines or vaccine components. The profile that will emerge of the body's response will be based on the most sophisticated and comprehensive tests available.

"Being able to track activity in the immune system and note the differences in the immune system's response before, during and after exposure to infection or vaccination will help us develop safer and more effective therapeutics and vaccines," says Michael Ramsay, M.D., president, Baylor Research Institute. "Our research also will add to the body of knowledge on the immune system, and that could lead to other exciting discoveries."

The researchers' studies will focus on immune responses to vaccines against specific viruses and bacteria such as influenza, neumococcus and West Nile virus. They will take advantage of technological developments and advances in creating databases to establish mathematical models to identify and analyze complex changes in immune profiles.

BRI's efforts, along with the other research centers, will help establish a centralized infrastructure to collect, characterize and store human samples and analyze the large data sets that will be generated. Eventually, the centers will gather the information from this effort into a centralized Web-based database they will make available to the scientific community to promote and support human immunology research.

"Because of this research, we will no longer only have to rely on animal models to define the principles of human immune regulation, which is not always effective," says Dr. Ramsay. "The knowledge gained also will improve our understanding of the range of vaccine responses in particular subpopulations, including newborns, young children, the elderly, patients taking immunosuppressive medications and those with underlying diseases of the immune system, such as allergies and autoimmune diseases."

Besides BRI, other research centers participating in the program include: Dana-Farber Cancer Institute in Boston, Emory University in Atlanta, Mayo Clinic in Rochester, Minn., Stanford University and Yale University.


http://www.medicalnewstoday.com/articles/205924.php

Critical Information about FDA Approval of Benlysta for Lupus

I am just adding this information about the FDA and the pending approval of a one of its kind, very first Lupus Medication Benlysta. I have been following the clinical trials and all of the information about it now for at least 3 years, awaiting the day it is formally approved and I can have my first infusion hopefully. If any of you are Lupus victims, know someone with Lupus, or just are an advocate voice, here is a portion of the newsletter I get from Lupus.org. It contains an email address where you can email your thoughts, comments and encouragement to one of the FDA members that will have some weight about getting the medication approved. Thanks so much for all of your incredible support for myself and so many others...

Here is the article:

Here is a portion of the newsletter I get from Lupus.org. It has the email address of one of the women at the FDA who will have something to do
with Benlysta, the brand new Lupus medication, first ever of its kind,
FDA approved by Dec 9th 2010!! Please send her a brief email of your
hopes and feelings about getting this approved. :)

Food and Drug Administration to Hold Hearing on BENLYSTA®

On November 16, 2010, the Food and Drug Administration (FDA) will hold a hearing to discuss the application to approve BENLYSTA® (belimumab) as a
treatment to reduce disease activity ...in adults with active, autoantibody-positive lupus.

If approved, BENLYSTA® will be the first drug to be specifically developed
for lupus and the first new treatment for lupus in more than 50 years.

While BENLYSTA® may not be appropriate for all people with lupus, having a
new approved treatment for lupus would be a significant step forward and
would provide a pathway for future approval of the arsenal of therapies
required to manage a disease as diverse and complex as lupus.

Make your voice heard! It is important for the FDA Committee to have a clear
understanding of the diversity of the disease and how it impacts people
with lupus and their families. You can help by sharing your story about
why new treatments are needed and the hope for new treatments in the
future.

Email your short statement to Yvette Waples at the FDA, Yvette.waples@fda.hhs.gov by November 1, 2010.