May is Lupus Awareness Month and World Lupus Day. This past year Benlystawas approved by the FDA, which is a big deal because until now their hasn’t been a drug approved specifically for lupus. It took over 50 years to get to this point.
What is Lupus from World Lupus Day?
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 longer than six weeks and often 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 (“foreign invaders,” like the flu). Normally our immune system 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.
Every day, more than 5 million people worldwide struggle with the often debilitating health consequences of lupus, a potentially fatal autoimmune disease capable of damaging virtually any part of the body, including the skin, heart, lungs, kidneys, and brain.
I learned this morning that Toni Braxton has Lupus so this is a tribute to her. I am so glad to see when a celebrity tells the world that they have lupus. It gives a voice to a disease that affects so many people who don’t live in the spotlight. Thanks Toni for sharing that you have lupus. She announced her lupus diagnosis to the public in 2010, which took a tremendous amount of courage.
I wasn’t new to depression when I was diagnosed with lupus and fibromyalgia amongst other things. It was a total blow to my plans for life. The lupus totally rocked my world. My life was turned totally upside down by the daily pain I was feeling. I had lost total control of my body and I couldn’t do anything about it. I started to spiral out of control. My life became the disease not a part of my life. I looked in the mirror I saw lupus. I woke up I saw lupus. Lupus tore my life apart piece by piece.
It took me several years to find myself and realize that I was more than lupus. I was a human being with a condition. I had to learn to deal with all the ups and downs of lupus. It wasn’t easy, but I had to pull myself together. I’ve learned that planning ahead isn’t a guarantee of being able to do something. I’ve learn sometimes I can walk while other time I have to use my wheelchair. My days vary with my illnesses.
Dealing with the depression isn’t easy for me at all. I’ve learn that I have some control over what the depression does to me. I can tell when I’m spiraling into an abyss of depression. When I see and feel like I’m spiraling out I have to take a step back from life. I’ve learned to do things to bring about happy moments in my life. I’ve learned that sewing relaxes my mind and reading allows me to wander away from reality for a little while. Often I’ve put myself into the stories. The most valuable thing I’ve learned is to express my inner thoughts through my blog and in my many writings.
Yes, the diagnoses have turned me inside out, but I’ve learned to deal with them. I’ve had to adjust my goals in life, even if it’s not exactly what I’m waiting for in life. I try to make the best of things. The pain does overwhelm me at times, but I’ve learned that it will pass and this is what gets me past things.
Washington, DC) On November 16, 2010, the U.S. Food and Drug Administration (FDA) Arthritis Advisory Committee voted overwhelmingly (13 to 2) to recommend BENLYSTA® for approval as a treatment for the autoimmune disease lupus. Subsequently, FDA officials announced a final decision regarding approval has been delayed until March 10, 2011.
Sandra C. Raymond, President and Chief Executive Officer of the Lupus Foundation of America (LFA) has issued the following statement:
“We are pleased that BENLYSTA has cleared a significant hurdle on its path to becoming the first FDA-approved medication for lupus in 52 years – since Dwight D. Eisenhower was president. BENLYSTA is now on track to become the first approved treatment ever developed specifically for lupus.
“The recommendation by the FDA Advisory Committee is not only a victory for developers Human Genome Sciences and GlaxoSmithKline, but also for the entire lupus research community and industry. We have all worked for decades to overcome many challenges in developing new therapies for this unique and difficult-to-treat disease. For people with lupus, the panel’s recommendation represents a beacon of hope that new and improved treatments can be specifically developed for lupus.
“It is important to understand that a delayed decision from the FDA does not indicate whether they will approve or reject BENLYSTA. We appreciate the efforts of the FDA to ensure that medications for people with lupus are safe, effective, and tolerable.
The voices of people with lupus were heard loudly and clearly during the hearing. Their testimony demonstrated the urgent need to develop new, safe, effective, and tolerable therapies for lupus. Each person with lupus is unique, and if BENLYSTA is approved, it would be a significant and necessary first step towards creating the full arsenal of treatments that lupus requires.
The LFA thanks the committee and FDA officials for their time and review to ensure the safety and efficacy of this potential medication for people with lupus. We also want to thank the numerous individuals with lupus and their families, who provided testimony and attended the hearing to show their support.
We are greatly encouraged by the panel’s vote, and eagerly await the FDA’s final decision. The LFA will continue to follow this process closely, and keep constituents apprised of developments.
About the Lupus Foundation of America
The Lupus Foundation of America (LFA) is the foremost national nonprofit organization dedicated to finding the causes of and cure for lupus, and providing support, services, and hope to all people affected by lupus. The LFA and its national network of chapters, support groups, and local representatives conduct programs of research, education, and advocacy.
About Lupus
Lupus is an unpredictable and potentially fatal autoimmune disease in which the immune system is out of balance, causing inflammation and tissue damage to any organ system in the body. The health effects of lupus include heart attacks, strokes, seizures, and organ failure. An estimated 1.5 million Americans and at least five million people worldwide have a form of lupus. For more information, visit www.lupus.org .
About BENLYSTA
BENLYSTA was developed by Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) as an investigational therapy to treat lupus and last year successfully met its endpoints in two pivotal Phase III clinical trials.
As you can imagine, I’ve spent a lot of time in a waiting room. I’ve seen such a variety of people in them. Some people are regulars in the doctor’s office. There are many ways you can tell regulars and first timers. Sometimes the doctors or staff knows the person by their name. Other times you see them with a tote bag full of goodies to pass the time. I’m the tote bag person most of time unless I leave it by the door. Time seems to pass quicker if you have something to do. One of the doctor’s offices I visit has sports and men’s health magazine. Sorry guys, I have a hard enough time I keeping up with my own health issues. I have a few magazine of my own that I’ll bring with me if I’m not in the middle of a good book.
Lately, I’ve not been allowed to be bored. I’ve learned the less time I take thinking about my illness the less time I spend depressed. I went through several years of that and still have some times where I want to take a large hammer to the lupus and fibromyalgia. But then I’m reminded that involves hitting me and I’ve had enough pain for a life time. So I just grin and bear it at times while other times I wish it away, but I’ve yet to put the perfect spell on it. Yeah, I’m off topic again.
I’ve seen hundreds of different faces in the waiting rooms I’ve visited. It’s not how anyone plans to spend their time, but eventually everyone is seen by a doctor. Remember most of you are seen by a doctor after birth and you will definitely be seen by one when you die. I would harp on the last topic cause most people don’t want to think about death. I know I don’t want to think about it. Each waiting room I’ve visited has different people. The nervous people usually look around a lot and you cannot get any eye contact. The “regulars” usually keep their head in a book or on the television. Then their are the people that are in a big hurry. Each time someone’s called they jump up a bit. It’s amazing how many different styles of people. Then there is the ones who go up to the staff and say I was first. Well that annoys the heck out of me. Doctors have multiple patients with different needs. Would you put an earache in front of a heart attack? You wouldn’t do that even if the child is in pain. I hate seeing kids in pain. My daughter and I have had enough earaches for a life time.
A dead giveaway of a new patient is someone with a clipboard in their lap with a drug company pens in their hands. At times they’ll look around like they are in another world, which is when they’re trying to remember their medical life history. I have a hard enough time remembered mine without being 90 and trying to get heads or tails of my complete medical history. Its times like that when it would be nice to have had a note taker for the last 90 years. But that’s not possible unless you change who’s your note taker.
I’m a regular at my doctor’s office and I love to take note of the many personalities in a doctor’s office.
What’s the most memorable person when you sat in a doctor’s office??????
I’ve been neglecting this blog for a while truthfully. Its not that I don’t still live with lupus and fibromyalgia. I just haven’t felt like writing over here, but I’m getting back to posting regularly over here. I’ve been busy with a lot of things. My daughter has gone back to public school which has taken a lot of pressure of me. I have been trying to keep myself busy with other things. I’ve been sewing some when I’m feeling up to it. Our kitchen table has been the permanent place for my sewing machine. I’ve done some experiments with creating. It’s helped me deal with my illness better and it makes me feel like I’ve finished something. I’m working on improving my writing stories. We’ve had more appointments than normal lately. My partner was in the hospital for a while which wasn’t an easy thing to go through being sick myself. Our dogs have been doing well. Both had a birthday over the summer so they’re 8 and 10.
Since I’ve been living with lupus the issue of health insurance has been an issue for me. Every six months I have routine blood work to check my lupus levels and to check my vitamin d levels. These are only a couple of things I have checked because of my medical problems. In May 2010, I had my gallbladder out and the bill for that was pretty high. Removing my gallbladder wasn’t an elective surgery because they were concerned it may explode.
If I didn’t have health insurance I would not have my health issues under control. I would be stuck praying to God I survive and I would be living in horrible pain. When I had no control of my pain everyone around me suffered too. On a regular basis I take several medications for some relief to my health issues.
If I was to apply for health insurance I would be denied because of preexisting health problem. In March 2010 President Obama signed the Health Care Reform bill to offer health insurance to 32 million Americans with no health insurance. This bill will help a lot of people with various chronic conditions such as lupus and other illnesses. To enroll you will have to be without health insurance for 6 months or be denied coverage due to pre-existing conditions. The coverage could start as early as August. To apply for this coverage visit the Department of Health and Human Services. www.healthcare.gov
Source: Lupus.org-People with Lupus Denied Health Insurance Due to Pre-Existing Condition May Be Able to Obtain Coverage through Health Care Reform Law Plan
I haven’t been around in a while because of my health. A few weeks back I learned that I have extra health problems. I’ve developed gallstones and a thickening in my abdominal wall and I don’t know what has caused anyone of this yet. It is pretty scary because lupus attacks just about every part of your body. I don’t like waiting for test results it’s a lot like waiting for a boiling pot to boil and nobody likes either one. The good news is they had me change my diet to a low fat diet which has been a bit of a change. And really I don’t eat a whole lot of fat to begin with. It has been surprisingly easier for me because I know that my health requires it and I don’t like the added pain. I’m working on staying positive about it. My faith is in God’s hands.
Dealing with the cold weather with a chronic illness is not an easy thing. I have found from years of experience that if I am warm it is not so hard on me. I have done a lot of experimenting to keep myself warm during the cold weather. I live with my heating pad all the time anyway so I use it to keep warm in the winter and sometimes the fall. I have learned that it is better to dress in layers when I am inside and out. I usually wear double pairs of socks at times when my feet get chilled. Today I received a package from my father with a couple pairs of legwarmers. Even though we have cold weather they do not carry them in the stores here. They are important to me because I get a small chill and my legs are hurting me a lot. So I am thankful to have two pairs of leg warmers for my legs. For those of you who do not know what leg warmers are they cover up your legs from ankles to right below your knees.
It’s been a rollercoaster of a week for me. The computers have been a royal pain between the Linksys not working and the cable modem lights turning off and on. I think I have that issue fixed. Some days computers are more of a pain than they’re worth. Our cables been a royal pain for the last few weeks, but the last week has been really bad. The channels turn totally back then tell you to please stand by. The insanity with the cable is a really annoying at times. I have an area on my middle back that hurts pretty bad and well it’s also been a royal pain in the moon. I was supposed to have a tooth extracted and I had to cancel the appointment because of the upper respiratory infection, it’s taken me a few years just to get the guts to have the thing pulled. On top of that I have TMJ and I need a new splint, but I’m not sure where I’m going to find the money for one. I clinch my teeth at night and I wake up with the joints being a royal pain. I’m hoping to reschedule the appointment next week, if they don’t have a waiting list. Where I’m going to have the tooth extracted doesn’t do the splints so I have to go through the whole process of a new patient again. I hate being a New Patient.
