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.

Rhia
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.
http://donate.lupus.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=1260
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: https://www.anywhereconference.com/?Conference=130257715&PIN=7292757
5. Enter your Name
6. Click Go

Or Join the Web Conference Manually

1. To join the Web Conference log into: https://www.anywhereconference.com/
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:

http://www.facebook.com/home.php?ref=home#/ravishingrhia?ref=profile

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.


http://en.wikipedia.org/wiki/David_Koresh


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:


http://en.wikipedia.org/wiki/Diane_Zamora



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:


http://en.wikipedia.org/wiki/Charles_Whitman



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.






Tuesday, October 27, 2009

Holidays, Dreams, Illness and Love

As I look forward to the fast upcoming holiday season, a piece of me is excited. Fall is upon us, and it has brought a cool fresh brick crispness to the air. One one hand I am thrilled to see the cooler weather, and the holidays, yet on another I am worried and stressed over the fact, my illnesses tend to zap my energy each day. I am truly concerned about all that I need to get done to be ready for Thanksgiving and Christmas. My usual holiday season was all about every room decorated, a beautiful tree, the smells of cinnamon, ginger, and spices in the air. The taste of homemade fudge, and home made fruitcakes. Our Christmas puzzles that have become one of our traditions over the past couple of years. We usually do a new one or two to add to our collection. The fun over buying gifts, and knowing how much your loved ones will be surprised. Family, especially my daughter, her husband, and my 2 grandson's, who are James, he will be 4 in December, and Logan, who is now almost 5 months old. I don't get to see them very often since they live about 8 hours away, so that is a joy I know is a blessing. Jim and I have done a Thanksgiving and Christmas dinner every year since our first one together. LOL, even though at times it is only us, and our two "fur kids", Tazz and Bubba Gump, my pug and chi-weenie, we cook like we are having part of the nation over for dinner. I love decorations in every room, like our Christmas bedspread, shams, and dust cover. I love making what I call a "yule log". I found some large enough pieces of our China Berry tree that I can take saw off in the right length, then I decorate them with holiday poinsettias', holly, little birds nests, etc to reflect the holiday we are in. They look awesome sitting on our table, and then on our heaters.
Yet, I also fear the holiday season. With each passing year, and especially this one, my physical health has failed even more. I see the hundred's of things I want to do, to be ready for the joy of the season, yet when I think about what I need to do, I go into overload, hoping and praying the Fibromyalgia, Lupus, CFS, and the rest do not get me so completely down in a flare, that I will be unable to enjoy the baking, shopping, cooking, decorating, and my family.

When you have something that is a chronic illness or chronic pain, even though you fight hard to not allow it to rule over your life, you come to find quickly, even with good stress, it can kick you down the mountain very fast, and leave you in a crumpled heap on the floor, until you can once again find the energy to force yourself back up the mountain. We have had a very difficult year in many ways, along with some good things also. My Lupus, and now Fibromyalgia has brought a whole new array of tests, doctors, and honestly new symptoms that are really at times getting me down and out. I find myself much more fatigued most days, I am slower at things I used to be fast at, and with the extensive and severe bruising all over my arms and legs, I feel embarrassed to go out in public, due to all of the looks and stares I get. I feel as if people think I have some kind of contagious disease like Leprosy or something, when I see the fear in their eyes. Now, the dermatologist seems to possibly think they could get much lighter, but it could be years, and even now, all we know it is it NOT skin related, but it is something to do with my blood vessels and it petechiae and purpura. Thus it is still a mystery, and between what the doctors have said and NOT said, Jim and I have a theory about the severe bruising. For one, we feel after much research, the Lupus itself is causing part of the issue. Lupus tends in some people to attack the blood vessels, causing them to weaken and "leak". Which makes sense, because the type of Lupus I have, can attack any type of connective tissue in the body, from the heart, lungs, kidneys, brain, skin and of course blood vessels. Secondly, the very medications that are helping to try the "wolf" at bay (Lupus means wolf in Latin, since one of the symptoms is a "butterfly" rash across the cheeks and bridge of the nose, making it appear like the "mask" of a wolf.) One of the medications in particular can weaken the vessels also, but it also thins the skin, so I am easier to get scratched, easier to bleed, and it takes longer for me to stop even a small wound from bleeding.

But, as the dermatologist said, it is NOT worth possibly making my Lupus worse by getting off the medications. I need them to keep the Lupus from causing further health issues, and even at that I still could develop more organs involved.

So, after all of my year plus research, I am adding yet more pills to my daily routine. But, this time I am adding more Vitamins and Supplements to the mix. The 4 I am adding are highly recommended on many of the huge Lupus support foundation sites. None of them are harmful to me, so I want to take a chance to see if they can help. Also, after much research on Fibromyalgia, I decided to try the Fibromyalgia/Guaifenesin Protocol. For some reason doctors have found out that Mucinex DM (the Guaifenesin) helps to lessen some of the symptoms of FM and CFS. It also is not harmful, so I have added it to the mix also.

I am keeping a daily very detailed journal of what we have added, what changes I have made as far as lifestyle as of lately, what the doctors have said, done and not said, nor done. We intend on arming ourselves with several pages of everything I have been through as far as tests, doctors, blood work, etc. along with my medications, and everything I am doing, so we can take it to my Primary Care Physician, who by the way honestly is the only one that really seems to care about what is going on with me, and he is more versed in many ways about Lupus, FM, and CFS than he darned specialists! WE intend on sitting down and having a consultation with him, and see if between the 3 of us we can come up with some type of "game plan" as to what to take, don't take, do not do, and so forth. Jim and I feel since he is very willing to listen, then give his sound advice, that we may be able to fight these Chronic Illnesses much better, and get my flares more in control.
Okay, I shall stop for now.... I hope the feel of Fall and Winter bring you much joy, and anticipation of family, food, friends and most of all... Love...