Wednesday, November 18, 2009

Holidays and more....

Sitting here wondering where once again a year has gone. It feels like we were just celebrating last year's holiday season, and once again we are upon another one. I do have one gripe about stores. It seems every year they get earlier and earlier putting out Christmas decorations, so long before the holiday, that you are almost tired of looking at it by the time Christmas is here. This year seems to have been the worst. They had Halloween stuff out weeks and weeks before October it seems. Then the day or two before Halloween, they had shelves and shelves of Christmas decorations and it is just like they skipped Thanksgiving, and here Christmas stuff is out 2 and a half months before it should be. I know due to the economy the retail business is probably trying to help shoppers and themselves by making the "buying" season longer. Since Wal Mart did away with layaway, along with K-Mart and Target that makes it more difficult because people can no longer get things early, put them in layaway and pay them out. Now with many over the max on their credit cards, most of us surely do not need another mound of credit card debt after the holidays. What also gripes me is as horrible as credit is now for many people, we tend to still get credit card offers in the mail. Many of them are also full of very expensive fees, that are so far hidden in the fine print, no one can find them. Then when a bill arrives and is 40 dollars or more higher than what it should be, you can see you have been scammed with either fees, or higher interest rates. I am going through my own mind getting ready to write my annual Christmas Letter to family and friends. It has been not a really great year for many reasons, most of it for us health reason, between Jim and myself. We can hope 2010 brings us comfort, answers, and hopefully peace, for us and the world.

Wednesday, November 11, 2009

Webinar/Teleconference for the New Lupus Medication Benlysta on November 30th!

Hello! I thought some of you with Lupus or are a care taker of someone with Lupus would be thrilled to listen to this Webinar, plus there will be a teleconference you can join in by following the instructions below.

This is exciting news about the first ever of its kind medication for Lupus!

I am thrilled and anticipating the day it is FDA approved so I can try it.

Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009 The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.

LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance by clicking this link.
Please note that space at the event is limited. The LFA will provide a summary of the discussion following the event for those who are unable to attend.

Call In Details

1. Dial the Conference Access Number: 212-401-6760 or 866-551-3680
2. Enter your Participant PIN Code followed by the # key: 7292757#
3. You will be placed on musical hold until the Event begins
4. To join the Web Conference click this link:
5. Enter your Name
6. Click Go

Or Join the Web Conference Manually

1. To join the Web Conference log into:
2. Enter the Web Login Reference: 130257715
3. Enter the PIN Code: 7292757
4. Enter your Name
5. Click Go

IF you need further informaton you can view the post about this on my Facebook page at:

Sunday, November 8, 2009

Ft. Hood, Tragedies in TX, Lupus good news and more

Hello to everyone! By now, me mentioning that we have wrangled our first "stump" and jumped over it on the health care reform bill, is probably "old news". :)

But, I still want to express my feelings, emotions, faith in us as a nation, and try and look at the positive side of this history making bill, since this past week has been such a tragic one.

I have written in my blog a bit about the events of this past week. Ft. Hood TX is only about 50 miles from me. Most people in this nation are familiar with Waco Texas, due to the fact about the "Branch Davidians" and David Karesh. The horrific events that took place in February 2003. Just in case you don't remember the nightmare that took place there here is a link that gives details of him, as well as the events that unfolded on the "Davidian Ranch" in 1993.

Like many other states, Texas has had their share of horrific events, man caused and nature caused. We can look at Galveston Tx, that has now suffered two massive hurricanes that totally destroyed the city. One in 1900 and again in 1915, plus the most recent one "Ike" in 2008, that once again obliterated the entire community.

We have also had several "man made" issues, from the woman in Houston that drowned her 5 children due to post pardum severe depression/psychosis, Andrea Yates. That story rocked not only Texas, but our entire nation, leaving us totally shocked and confused.

Then their was the "Texas Cadet" murder by Diane Zamora and her boyfriend David Graham. Both of the in the Texas Cadet program, yet due to whom Diane considered a "rival" to her relationship, they both killed Andrea Jones in December 1995. This act of jealousy and violence took place again not far from where I live, in the Mansfield Tx area.

Here is a link to more information on this:

OF course in 1966, there was the young man who climbed atop the University of Texas' Bell Tower. Charles Whitman then opened fire and mass murdered a number of people, along with wounding many more.

Here is a link to that story:

Now we add to that "limited list" of outrageous and shocking horrors, what went on at Ft. Hood TX. Our state and our nation, plus around the world are still in shock and disbelief this one man, who has not only been in the Army serving for many years, but also a psychiatrist, could do something as evil as murder in cold blood his peers right their on the largest Army Base in the World.

Of course, now we have the monumental House vote that approved the first step of health care reform for our nation. Now it moves onto the Senate to pass their view of the bill, then comes to combining both, to go back to the House and Senate for final approval, and onto President Obama, for him to sign and make it officially law! Lots of steps to go, but this first one was extremely important.

Other good news this week, includes the breakthrough in the first ever of it's kind Lupus medication. After succesfully passing through all of it's clinical trials and being very positive on all counts, it is almost ready to go in front of the FDA for final approval, and then THANK GOODNESS ONTO US WITH LUPUS AS PATIENTS!

There are also a couple of other Lupus drug trials going on, some in Great Britan, along with a few more from what I have read here in the United States. I am so thrilled about these one of a kind, breakthrough medications, for it has been over 5 decades since any kind of clinical trial, medication, or much research has been done for SLE-Lupus patients.

There have also been many articles about more research and positive outcomes in the fight against Fibromylagia and Chronic Fatigue Syndrome! Our nation, along with others are really moving ahead on these syndromes, and since I am also a sufferer of FM and CFS, along with Lupus, Sjogren's, and Raynauds, it is music to my ears to hear this incredible news.

Other than that, we have had almost near perfect weather this past week. It has been sunny, with highs in the upper 70's, and the lows at night in the mid to upper 50's, which makes for pleasant conditions as far as sleeping.

Not too hot during the day, and not too cold either... today we do have another cool front moving in and it is cloudy, as we expect some rain with this one.

As far as my health and ongoing medical issues, I have been fighting another Lupus flare, off and on now for weeks. This one seems to be milder, but it just seems it is lingering longer. I do feel either a combination of meds are working, or the Methotrexate is working. I have an appt. with my PCP on the 30th. I want a consultation as to a game plan for my conditions. Keep me in mind over the next weeks, as I gather concerns, questions, & hope for my PCP to support a plan for me to get better.