Wednesday, October 21, 2009

This is incredible breaking news for Lupus Patients!

http://lupus.webmd.com/news/20091019/genetic-link-to-lupus

Genetic Link to Lupus

More Than a Dozen Different Genes May Play a Role in Causing Lupus
By Jennifer Warner
WebMD Health News
Reviewed by Louise Chang, MD

Oct. 19, 2009 -- At least a dozen or more genes may help explain what causes lupus, according to two new studies.

Researchers have identified 12 genetic variants that are associated with an increased risk of systemic lupus erythematosus (SLE), the disease commonly referred to as lupus.

Lupus is an autoimmune disease in which the body’s natural defense system attacks itself. The disease targets the joints, skin, and other organs of the body.

The exact cause of lupus is unknown, but researchers have long suspected that genetics play a role because the disease is more common in some ethnic populations than others and also tends to run in families.

Genetic Link to Lupus

In the first of two separate studies, published in Nature Genetics, researcher Vesela Gateva of Genentech in South San Francisco and colleagues compared genetic markers in 1,923 people with lupus and 4,329 healthy people.

They found five genes that were associated with an increased risk of systemic lupus erythematosus.

In the second study, Jian-Wen Han of Anhui Medical University in Anhui, China, compared potential genetic markers for lupus in 1,047 Chinese patients with SLE and a comparison group of 1,205 healthy Chinese adults.

Their results confirmed seven previously reported genes for lupus as well as identified nine new genes associated with an increased risk of lupus. Two of those genes overlapped with the five found by Gateva’s group for a total of 12 new potential genetic markers for lupus.

Researchers say the presence of these genes, together with environmental and lifestyle factors, such as sunlight, stress, hormones, cigarette smoke, and certain infections, may all play a part in what causes lupus.


Friday, October 9, 2009

Little Known Virus Could be the answer to Chronic Fatigue Syndrome

This is a true breakthrough for the millions suffering from Chronic Fatigue Syndrome. Those with it and related diseases such as Fibromyalgia have gone for years with little hope, very little explanation as to the cause, medications, research, and possibly a cure! I am thrilled about the thought of the possibility of some way to avoid or cure this life altering syndrome.

Plus, rather than make it appear it is all in our heads, now there is more proof it is truly a very real illness.

http://www.nytimes.com/2009/10/09/health/research/09virus.html?ref=health

Thursday, October 1, 2009

Stand up for Health Care Reform and a Public Option! Make Congress see what really is happening!

http://www.thepetitionsite.com/2/make-it-mandatory-congress-spends-time-assisting-in-our-ers-or-with-a-patient-dying-with-no

The above URL goes to a petition I created on Care 2 to make is mandatory for Congress, both House and Senate to go spend 2 twelve hour shifts in one of our busy, overwhelmed ER's, or with a terminally ill patient with no insurance coverage. They need to see the real world daily drama so many millions of Americans go through daily! Sitting at a desk on the Congressional Floor does NOT give them a taste of their own medicine! Can you say Reality Check!

Thanks for your time and support! Rhia

Friday, August 21, 2009

A Quack Doctor, I still have no answers for my horrible health siutation

This is a letter I wrote to one of the places I am a member of in regards to health care reform. I have been so totally torn up about what happened to me this past Wednesday when I went to a referred Rheumatologist. Not only was I treated like crap, he basically told me I was either causing the horrible bruising (petechiea & purpura), or he insinuated Jim was causing it. Here is the letter and you will see why I am totally wiped, weary, and ready to just say to hell with it all!

The people of this nation have made it quiet clear, we speak as a majority to vote this health care reform bill into action. It is more than time that Congress puts the bipartisan back stabbing, acting like toddlers mess away, and get down to the brass tacks. Our present health care system is non-existent, old and antiquated, feeds on the insurance companies thriving, while the patients are being bled dry by the sky rocketing costs of medications, doctors visits, tests, and health insurance. NOW is the time for that to change! No MORE "pre-existing" bull, no more running not needed tests such as blood work, MRI's, CT's, and the entire gamut of what doctors do to get paid properly, as the insurance company slaughters the doctors by not paying what they truly owe them. I am totally shocked when I get one of my bills from a doctor. I am an established patient, not a new one, I see the doctor for a quick follow up, he is in there with me no longer than 3 to 5 minutes, yet the bill is over 250.00! And gosh knows from the nightmare of yesterday how much of a charge there will be by a total jerk of a physician I went to. I go to a new rheumatologist, he "blew off" the very reason I went to see him for. After I have had an entire battery of every blood test in the world by my hematologist in the last 3 weeks, this so called want to be a doctor, rheumatologist wanted to RUN THOSE TESTS AGAIN!! Why??? Well for one thing, the lab was OWNED BY THE RHEUMATOLOGISTS! Makes send huh... they also get the lab payments... so they can run up thousands of dollars worth of blood work that patients have already had done, so they can collect MORE MONEY from the consumers and our insurance companies. I would bet when I "see" the bill, he charges 500.00 plus in his fee, when HE NEVER ONCE TOUCHED ME, OR EXAMINED ME IN ANY FORM OR FASHION!! He has his "assistant" briefly ask a few questions, half way look at me, and I had provided A LARGE AMOUNT of brand new blood test results that I gave her... along with the reasons I was there. She left, was gone about 5 minutes, brought the doctor in, he said basically my other doctors were "idiots", that nothing was wrong EVEN THOUGH I AM COVERED HEAD TO TOE WITH EXTREMELY SEVERE BRUISING. I am constantly bleeding under my skin, and it has been going on now for almost a year!!! Yet this idiot said "he was NOT concerned about the bruising" and insinuated there was NOTHING to worry over, they are just “garden variety” bruises is what he told me...This is after 4 other doctors, along with lab technicians, and nurses, that this type of petechiae and purpura was NOT regular bruising. The other physicians seem to think it could be a type of vasculitis, due to the autoimmune illnesses that I have, which as Lupus, Sjogren’s and Raynaud’s. Everyone that knows me and sees me including my doctors are EXTREMELY CONCERNED about my health situation, and honestly every one including the nurses, lab technicians, and my doctors told me they are praying for me. That tells you this what ever it is that I am totally covered with is something potentially extremely serious. Now I am left at a cross roads once again, not even knowing where to turn, especially since my PCP and the hematologist told me, if I were to fall, or be in an accident, I could bleed to death internally!!! That if I fall, I go straight to the ER, or if I have any symptoms of internal bleeding. My story is a nightmare, just like so many. The doctors, insurance companies, and medical personnel care about MONEY! Not all of them, but many of us encounter this type of greed, not caring, non sympathetic physician, that wants to rerun tests, run up our bills, and make a fortune while like myself, I may NOT live if I don't find out what is causing this horrendous petechiae and purpura (special bruising other than a normal bruising caused by an autoimmune disorder. My own body and antibodies are attacking my blood veins, arteries and capillaries and basically destroying them)...

I am depressed, mad, hurt, shocked and most of all myself and my family and spouse are terrified I could bleed to death.


So something needs to be done... AND DONE NOW TO FIX THIS MESS we call Health care!



Wednesday, July 8, 2009

7 Days to Re-Invent and Invest in Your life

As I read through these, early this morning I began to realize just how little time we spend taking stock in our lives, what we want, what we do not want, how we cope, how we avoid coping, and we run around with so much "stuff" to do, we truly do not slow down enough to find out who we truly are.

This seems like a perfect 7 days of ways to re-invent ourselves, to clean out the old, bring in the new, and figure out how we fit into our own lives...

Rhia
(courtesy of Care2 network)



By Carole Lynne, Intent

To renew and reinvent our lives, we all need a plan. Here it is: a seven-day process to work with over and over. This plan incorporates physical, mental and spiritual work. Use the whole seven-day process, or choose any one of the days to work with as you create the life you want.

DAY 1: RE-CHARGE A Day of Commitment
Focus on changing your mind-set: This is the day to change the thought patterns playing in your mind. Get rid of phrases such as “I can’t.” “Why does this happen to me?” “Things always seem to go wrong.” “After three bad things happen, life will change for the better.” Insert thoughts such as “I can do it.” ” There are creative solutions to any problem.”

Create a visual logo that works for you: Imagine the ocean or the lake, water falls, butterflies, sunshine, moonshine — whatever works for you. Note the image or images that work for you, and if you begin to feel negative, simply bring one of your positive images to mind. Your image is your logo for positive energy.
Tools for Day 1: Motivational books, music, dance, art, all that is inspirational.

DAY 2: RE-VAMP A Day of Planning
What changes do you need to make in your home?
What changes do you need to make in your office?
What changes do you need to make in your exercise routine, OR do you need to begin an exercise routine (with doctor’s permission of course)?
What changes do you need to make in your diet?
Tools for Day 2: A notebook and pen, or computer.

DAY 3: RE-CYCLE A Day of Throwing Out
Choose an area of your home, your garage, your backyard, and clean it out thoroughly. Have three boxes set up: one for things to keep, one for things to repair, and one for things to give to others. The hard work begins.
Do not tackle your whole house on this one-day. This seven-day program can be repeated again, and each time you can choose a new area. You can repeat Day 3 every week for six weeks.
Tools for Day 3: Boxes to sort things in, vacuum cleaner, broom, dust rags, music to play to cheer yourself on through this hard day of work.

DAY 4: RE-FRESH A Day of Refreshment
This is a day of reward. If you cleaned out your office or home on day 3, then refresh this space with a new plant or bunch of flowers. Give yourself a present. Open the windows and make sure the light can shine in.
Tools for Day 4: A present for yourself.

DAY 5: RE-TURN A Day of Spiritual Contemplation
This is a day to contemplate your spiritual values and re-turn to the values that are important to you. This is a quiet day of soul searching. In the past two days you have re-cycled some of your belongings and you have refreshed an area of your house or office: you did a lot of physical work. You were involved with a lot of “things.” Today, focus on the soul level. Sit and connect with the God of your understanding and ask questions:
What is the meaning of my life?
What am I here to do in this lifetime?
What am I proud of and what advances have I made in my life?
Which areas of my life need work?
This is the day to take an honest look at the way you spend your time, the people you associate with, the worries that occupy you too much, the fears that you allow to control you, the anger you may have towards others.
Tools for Day 5: An honest heart and an inquiring mind.

DAY 6: RE-INVENT A Day to Change Patterns
Yesterday was an assessment day. It was a hard day. Today is a day to make plans to change the parts of your life that need changing.
Do you have health problems you are not facing? Make an appointment with a health professional or get back to taking care of yourself in the way that you know is best for you.
Are you allowing the problems of others to dominate your life? If so this is a day to make plans to change your schedule. If you are a caregiver, find creative ways to get time off. And do not say, “There is no way.” Find out what your community has to offer. If the person you are taking care of does not want to receive care from others, then you must be strong and explain that you have to have time off.
If you spend all your time compassionately listening to others, remember that you will burn out if you do not have time for yourself. We all know this, but we do not always allow time for ourselves.
Tools for Day 6: A notebook, pen, computer, a telephone, appointment book.

DAY 7: RE-INVEST A Investment Day in All That is Positive
While I hesitate to use the word “re-invest” during this financial crisis, it is time to think about how to best spend your money, how to best spend your time. You have spent an entire week taking a look at your physical and spiritual life. Today is the day to take a good look at your financial life as well. Another coffee for five dollars may not be the best way to go. A lot of takeout food costs money. Are there ways to organize your cooking so that you do not pick up as much food?
Tools for Day 7: Your financial records, your checkbook, a willingness to make changes.
OKAY LET’S GET STARTED AND CHANGE OUR LIVES!

Friday, July 3, 2009

Happy 4th of July Holiday Weekend to All!


May you be blessed, happy and safe over this 4th of July Holiday Weekend! Whether you are traveling, out at the lake, camping, hiking, boating, having a celebration at your home, with friends, family, or just a quiet weekend... take care, watch out for the crazy drivers, be sure to use a life jacket... and celebrate the freedoms we cherish.

May freedom ring across our nation and around our world!!!

Rhia