Maybe I don't need it anymore!!!

Here's a funny little story. I have been waiting on a referal authorization for an Infusion of Rutuxan from my primary doctor. It has been a couple of months. Well yesterday they called to schedule an appointment because it has finally been apporoved. She wanted me to come next week I told the lady that I had commentments on Tuesday and Wednesday with my stepdad as he is having eye surgery and that Thursday I had a follow up appointment with my Rheumatoligist but I am available on Friday, I did tell her that I would be happy to cancel my follow up appointment and come in on thursday if she needed me to. Her answer was no keep your follow up appointment because maybe I don't need it anymore??? I got alittle upset and told her NO I do need it and I have been waiting months for this to be approved. Like all of a sudden I got healded and I don't need it anymore. I told her I see him every month like clock work. I have been battling this vasculitis for over a year and a half now and the drugs I'm taking just aren't getting the job done. Well that's one for the record books.

More information on Sjogren's Syndrome

Henrik Sjogren was a Swedish ophthalmologist and the first to recongnize that dry eyes and dry mouth were often found in people with connective tissue diseases. At any given time,the combination of problems encountered by the patient may vary considerably, from no active blood features of one ,two, or all three of these conditions at the same time. These persons often (but not always) have one specific blood antibody in their blood (anti-U1RNP antibody) but not the other antibodies associated with SLE, SSc, or PM-DM. Whether this is an entirely separate disease, or a situation in which one person has three diseases,remains uncertain. However, the presence of a single individualized and directed at the particular problems present at any given time. Sjogren's Syndrome also occurs in some people with lupus. They have an increased frequency of sun-sensitive rashes and Sjogren's related blood antibodies (anti-SSA and anti-SSB antibodies). Women with anti-SSA antibodies are at increased risk of having babies with "neonatal lupus" Symptoms in the infant can be as minor as a temporary lupus-like skin rash, or as serious as permanent damage to the electrical system of the heart which results in a very slow heart rate (complete heart block).

Lupus awareness month

May is Lupus Awareness Month. Show your support for the cause. If you know someone who has Lupus reach out to them and just let them know how important they are. You can also show your support by ordering items from www.cure4lupus.org they have many items to show that you are a supporter. Or wear purple to show your support.

What are the risks for Developing Lupus

Sex: More than 90 percent of people with lupus are women.

Age:Symptoms and diagnosis occur most often when women are in their childbearing years. between the ages of 15 and 44. Symptoms of lupus will occur before the age 18 in 15 percent of the people who are later diagnosed with the disease.

Race: In the Unites States, lupus is more common in people of color-African Americans, Hispanics/Latinos, Asian American, native Americans, Native Hawaiians and Pacific Islanders-than in the Caucasian population. It also appears that lupus develops at an earlier age and is more severe among members of the ethnic groups.

Family History: Relatives of people with lupus have an approximately 5-13 percent chance of developing lupus. However, only about 5 percent of children will develops lupus if their mother has lupus.

Learning about Sjogren's Syndrome

Sjogren's syndrome (pronounced show-grins).
While there is no cure for Sjogren's syndrome there are treatments that your healthcare provider can prescribe to help relieve the symptoms that are a part of this disease, and potentially help prevent some of it's complications. Sjogren's syndrome is an autoimmune disease, whereby your body attacks its own exocrine glands.These glands are your moisture-producing glands. Typically, with Sjogren's syndrome,the salivary glands and lacrimal glands are primarily affected. These are the glands that produce saliva and tears. Most likely, you are experiencing dryness symptoms of the mouth and eyes. Certain areas of your body may not be receiving moisture from other exocrine glands. These areas include the nose, skin, vagina, as well as the respiratory tract (lungs) and gastrointestinal tract (stomach and intestines). I have found that for my dry eyes I use a moisture eye drop. And for me I like to use Refresh tears. Moisture drops for dry eyes. And for my mouth I use a product called Oasis Moisturizing mouth spray. I had been given Restasis in the past but I could not get past the burning in my eyes. I have had this disease for many years so I have tried many different products, so you may want to try out different ones too and find the ones that works best for you. If you have a problem with dry mouth and dry burning scratchy eyes you may want to ask your doctor to check you for Sjogren's syndrome.

Different types of Lupus

There are several different types if lupus. Systemic Lupus Erythematosus, Cutaneous Lupus Eryththematosus, Drug-induced Lupus Erythematosus, and Neonatal Lupus. I have the first one Systemic Lupus Erythematosus or for short SLE. Systemic lupus is the most common form of lupus, and is what most people mean when they refer to "lupus." SLE can be mild or severe. Some of the more serious complications involving major organ systems are: Inflammation of the kidneys,(lupus nephritis) which can effect the body's ability to filter waste from the blood and can be so damaging that dialysis or kidney transplant may be needed. An increase in blood pressure in the lungs (pulmonary hypertension). Inflammation of the nervous system and brain, which can cause memory problems,confusion,headaches, and strokes. Inflammation in the brain's blood vessels, which Can cause high fevers, seizures and behavioral changes. Hardening of the arteries (coronary artery disease), which is a buildup of deposits on coronary artery walls that can lead to a heart attack. There is a lot more information available at: http://www.lupus.org I have been very lucky not to have had any real major organ involvment yet!

Where I get my information

I want you all to know that I am not just making up this stuff. I am gathering my information from several sources. Various Lupus books, Lupus Foundation of America, The Arthritis Foundation and numerous Internet sites. And finally all of my own experiences.

What is Lupus?

For those of you who don't know what lupus is here you go. Lupus is a chronic,autoimmune disease that can damage any part of the body. (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last for more than six weeks and may often last for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria and germs. Normally our immune systems produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues. "Auto means Self" and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain,and damage in various parts of the body. It's almost shocking but more than 16,000 new cases of lupus are reported annually across the country. Research estimates that 1.5 million Americans have lupus. The actual number may be higher, however, there have been no large scale studies to show the actual number of people in the U.S. living with lupus. It is believed that more than 5 million people throughout the world have some form of lupus.

Off to the doctor

I have an appointment today with my Rheumy at UCLA. Dr. John Fitzgerald he is a great doctor so far. It's just a follow up from last month. Since I'm still have what I call flareups from my vasculitis he wants to see me every month. This is just another one of my diseases that I have. I slept okay last night the weather has been warmer so I think it could be from that or maybe it's just the drugs either way I sure need sleep. So now that I've mentioned vasculitis I guess I will let you know all of the diseases that I have. Lupus/SLE, Rheumatoid Arthritis, Sjogren's Syndrome, RA Vasculitis and Neuopathy. I will go into detail on all of the diseases explaining what they are and then how they affect me on a daily basis. I have had it for along time so I want to go over some of my past and the problems that I've had because of it. I'm hoping that maybe something I write will be of some help to someone out there who may happen to read my blog. So if you have or know someone who has any of these disease please share my blog address with them. More to come...

Wow has it been a year already

Well it has been over a year since I created this blog and there has been alot that has happened not only to me but with my family. Lets start with some of the happier things that have happened . My oldest daughter Nichole got married to her true love Craig and now they are expecting their first child she is due October 7 2010. I'm hoping it will be a girl, but even if it's a boy I will be just as happy. I'm really looking forward to being a grandma and I'm very happy that I am alive to see it. My health has not been that good. I was diagnosed with Lupus SLE in October 1997. They discovered that I had Lupus when I went to the doctors because my joints were hurting, they would wake me up at night. They ran some blood work and the PA said well I think you may have Lupus and that I needed to see a Rheumatologist. That was just the beginning. At that time I had just met my current husband we bought a book on lupus and that the survival rate was about ten years I told him if he wanted to leave now was the time, well we will be married 11 years this August. And he is a great guys. Along with the Lupus and Rheumatoid Arthritis my rheumy discovered that I had Sjogren's Syndrome. Wow that was alot to absorb. I had never heard of these diseases before well expect the arthritis because my mom has it. But lupus, sjogrens what was that? I have found that most people that I talk to don't know what lupus is, they say I've heard of it before but I'm not sure what it really is and forget about sjogrens syndrome anytime I've gone to the ER and I tell them what I have they don't even know what sjogrens is and I have to tell them. I now you want to know what it is I will go into detail about it in another posting. Lupus is an autoimmune disease and sjogrens is basically dry eyes and dry mouth. I promise to write more tomorrow