Saturday, October 30, 2010

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.

Wednesday, October 27, 2010

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.

Monday, October 18, 2010

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 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 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 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

Email your short statement to Yvette Waples at the FDA, by November 1, 2010.

Saturday, October 16, 2010

Saturday's Winding Thoughts

This past week was more than hectic. Between the two of us, we had 3 visits to do tests and doctors visits in Dallas, and then a new doctor for Jim here in Ennis. In the middle of all of those, we had news that I am losing my insurance at the end of the year, our car acted up, I spent hours on the phone getting the insurance company, the doctor’s offices, and our pharmacy to do their jobs. We actually got our rugs cleaned yesterday, even while dealing with both of us in pain, and being worn out from the previous 4 days of being so busy. I was thrilled to see Saturday morning roll around for a change.
If I told the entire story of how many phone calls I made this week to the insurance company, to doctors offices, and the pharmacy, you would probably not believe me.
I think the one thing I got out of all of it, is that I spent MY TIME doing THEIR JOBS! That is what I just don’t get. All of us spend our hard earned money to pay for services, yet why is it we have to stay on top of people to make sure things get done correctly. If I had caused some of the issues I had this week when I was working, I would have lost my job for sure. I was flat LIED TO by one doctors office in Dallas. They claimed to have spoken to my insurance company, and that my insurance told them they would NOT pay for a very expensive evaluation that the INSURANCE COMPANY requires before I can have the pain pump surgery. I guess they thought they would collect almost 300.00 from ME, and I would not check up on them. I made a call that afternoon to my insurance company who first of all said they NEVER TALKED to anyone from that doctors office, and secondly, that visit WAS COVERED! Sure enough (as they HOLD MY FUNDS UNTIL INSURANCE PAYS), that visit will be paid for by the ins. company, all but my small co-pay! I have to wonder if they do that knowing the insurance does not pay all that well, so they tell certain patients that collecting cash from the patients knowing they must have that test first, before the can proceed.
That was just one instance, not including the other several things like another doctors office not faxing what the insurance needed about a new medication that I needed approval on... that the pharmacy first messed up by not sending the form to the doctor. Then the doctors office in spite of several phone calls from myself and my insurance did not fax over what the insurance company needed in order to approve the medication. And I have been waiting now for almost 4 weeks and it still is NOT approved.
Then another physician has a new nurse, that has been at the office long enough to know 3 of my medications come from a specialist pharmacy in Dallas. The doctor has to approve the medications, the pharmacy has to pick those up, then process them, and then MAIL them to me here in Ennis. Yet, the past two months I have had to make 2 follow up calls to remind the nurse that I am in Ennis, and she needs to do her part a couple of days earlier than some, because of them having to mail them. She messed up last month and we had to make a rush trip to North Dallas to pick my medications up because I would be out before they could get them to me. I have been seeing this doctor now for 4 years, and I have been getting my medications the same way all that time. Yet, I still have to make follow up calls in order to get my meds on time.
Then Thursday we both had visits in Dallas. Jim’s was first and we were told it might take over an hour to do all of the paperwork. So, we scheduled my MRI/arthrogram, which was in East Dallas, and his appointment was in West Dallas, several hours later, so we would not conflict with mine. Well, his paperwork only took about 30 minutes, and we had 3 hours or more to spend, waiting on mine. Well, we went ahead thinking maybe they might get me in early, and they could on the arthrogram, but not the MRI, which had to be done within about 30 minutes or so from the contrast being put in my shoulder. Thus luckily it was a beautiful day, so we spent a couple of hours just sitting in the sun, reading and resting in the parking lot of the hospital. The MRI actually ran late due to the patient in front of me, so it was at least 2:30 before they got me in (I had been told it would be at 1:30)... but we managed to get out of Dallas just before rush hour got really bad. We were totally exhausted by that time, but got home safe. Our car overheated on Jim Wednesday afternoon. We thought it was a broken radiator hose or the thermostat stuck wide open. But, hopefully it was just because of it being such a small radiator, it was a little bit low of water and antifreeze, so it just needed more of those. So far around town it did not overheat on us, but would did not want to chance it in traffic in Dallas, so we took my Mom’s car instead. Jim’s not sure about his new doctor. I went with him and can relate. The doctor changed his medication, to something Jim had never had, but did NOT explain anything to him, like it would take 3 to 5 days before it built up enough to work. He also did not tell him some of the bad and adverse side effects. Things that any physician, especially a new one, giving out a new medication that has some potentially adverse side effects, should tell every patient. So, as far as a doctor, he seems to be good, but he has no communication skills with patients.
The good thing is that I am a step closer to finding out whether I do have another tear or more tears in the rotator cuff in my shoulder, plus arthritis bad enough that I need a shoulder replacement (I know that does not sound good really, but I want to know for sure what the problem is), plus I am now going to be where I can have the “trial” for the pain pump. Once I have that trial time, and it works, then I can have the surgery, which from everything I have heard from all of my physicians, along with all I have heard from patients, and online, I will be much more less in pain, with much less medication with the pain pump. So, even though it entails a major surgery, the end result is a very positive thing for me. The issue for me is that my chronic pain is from Lupus, degenerative joint disease, degenerative disc disease, & other issues, such as probably Rheumatoid Arthritis. Thus, even replacing the shoulder, and all of the surgeries I have already had does not stop the pain. There is nothing they can actually “fix” that can stop all of it. They can stop the shoulder pain by a replacement, but my body will still hurt, first due to the Lupus. My other joints like toes, feet, ankles, wrists, fingers, hands, etc. still will give me fits. So will my neck, etc.... thus a pain pump for me is the answer. Hard to accept for sure, but I totally understand why.

In between all of the above, I also spent several hours online researching a new health insurance policy to begin on January 1. The issue with that is I have to try and make sure all of my doctors take it, and all of my medications are covered. Not an easy task, but it seems I may have found one. I need to verify for sure my doctors are going to take it, along with also making sure they are going to cover my medications, but the indication online initially makes me think this one make work out. ☺ A very good thing, since I have several specialists, and quite a few medications.

I could moan, groan and fuss. Believe me I was not a very happy camper at times due to those that are supposed to do their jobs, seemingly not doing them. Yet, it seems that I am definitely not the only one. There are many, many people out there going through the very same as myself, and some much worse.

Yes, the pain is bad. Yes, fighting with insurance, pharmacies and doctors offices is frustrating. Yes, having to go to Dallas more than once a week here lately is an exhausting situation.

But, I have to accept that is a part of my life. Even though I don’t know why I am dealing with the physical realms of these chronic illnesses... only to think it opens doors for me to tell others my story. It opens doors to new places and people online. So, there is a reason for it all.

When we are in a rough patch, it seems it is never ending. Yet, the good times in life always prevail. Once the rough patch is over, what comes next is life at its finest. ☺

Again, I will make two trips to Dallas next week. I soon face that trial couple of days for the pain pump. Then I will spend time again in surgery and recovering, but in the hopes that the results will be very good.

I take one step at a time, one or two feet up that mountain, never looking down, always looking up at where the peak it, and the light shines above....

Thursday, October 7, 2010

Extremely Important to take Action - Pain Medications & FDA Meeting on October 8th

 This is EXTREMELY IMPORTANT! The meeting about Pain Medication and A Chronic Pain Patient Bill of Rights will be put through the FDA on October 8th! All of our letters need to go into them before this important meeting. The URL will take you to the American Pain Foundation page that tells you exactly what steps to take. All of us patients, family, spouses, caretakers, doctors, and all please take time to you your letters in. :)

Saturday, October 2, 2010

Can't use a proper medical term, VAGINA, on a video online or on TV?? CBS is nuts!

Talk about double standards! A dear friend of mine online, who is a OB/GYN and has written a book for women, has just began her new book tour. Lissa Rankin is a well known, intelligent, and just amazing woman, that has a website called "Owning Pink". Her website is just incredible, and women of all ages would greatly benefit from her information there, as well as all of the awesome women who have joined forces there with her.

On her book tour, she was asked by a head person at CBS to do a video spot about her book and the tour. There had already been another video done by a guy and the title of the video is "15 Crazy Things About Sperm" Here is the URL:

It seems it is perfectly okay to use the term "sperm", or other related words, such as "Penis", "erectile dysfunction" which we see and hear all the time on commercials, but the word "Vagina" was said by another CBS person to be too "racy" for them to put up Lissa's video on their website which is: "15 Curious Things You May Not Know About the Vagina". Now tell me, why is it perfectly fine to use the term sperm, and not Vagina, when it is not slang, it is a medical term, and she in fact is an OB/GYN??!! It is pure sexist as far as I am concerned and women should be outraged everywhere. In fact men should be outraged. It is purely stupid. They can show bloody, horrible violence all over the internet and on TV. It is fine to show half naked women in movies for TV, and advertise medications for Erectile Dyfunction, even as far as saying "Be ready at any time", plus Jimmy Johnson advertising pills and there is even a RACE CAR for "Extendize", but the word Vagina is taboo? This is NOT the stone ages. This is NOT some slang term, and besides it is a video on CBS news on line not in some prime time slot on TV, which should not make a difference at all. Here is a post from Lissa Rankin, where you can read the entire story, and decide for yourself. But this is plain sexist, and I hope all of you stand up and be counted for. After all, all women have them, and there is NO good reason not to use this term.