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World Lupus Day- May 10, 2011

May 8th, 2011

May is Lupus Awareness Month and World Lupus Day. This past year  Benlysta was 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.

A Trying and Tiring Week

October 17th, 2008

This week its been really tough. My legs have been killing me. Its been really difficult to keep my focus on things. Its been really hard not to dwell on the pain. I’ve been trying not to think about it, but its easier said then done. This week homeschooling has been very trying while dealing with a teen with ADHD. I have to take a few breathers here and there because of the issues with her focus. It seems like she’s worse when I am in a flare up. I think its probably because she’s scared something is going to happen to me. I guess I can’t blame her because I am her whole world. We have always been close. I get told well she acts like you. My usual come back is she is my daughter after all.

Lupus Robbed Me of My Energy !!!

September 20th, 2008

I am struggling with my energy level, It gets to early afternoon and I’m totally exhausted. I could understand if one of my meds were changed, but they haven’t got a clue what to do to help. Its crazy to feel so tired when you do so little. Its not like I’m working out in a Gym or something. Geez I hate this damn lupus and all it does to me.

Does anyone know what could help with my energy level, I’m at a loss.? The doctor says its LUPUS, I hate LUPUS grrrrrr……..

Lupus has Changed my Life Forever

September 11th, 2008

I was once a physically strong woman.

It was gradually taken away from me.

Lupus has changed my life forever.

I once cared for others.

Now I have to accept help from others.

Lupus changed my life forever.

This is not the life I signed up for.

I once had dreams of many.

Lupus has changed my life forever.

Now, I just have to make it through the day.

I live with pain each day.

Lupus changed my life forever.

My family suffers with me.

They did not sign up for this either.

Lupus changed my life forever.

People say I don’t look sick.

I ask you ” What does sick look like?”

Lupus changed my life forever.

You say you understand, but you can’t unless you’ve lived with it.

You may understand if your family or friend is affected.

Lupus changed my life forever

What was once my life is now my life with lupus

Along the way lupus has taught me many things.

I’ve learned to appreciate the small things

To appreciate the good days, even if its just a simple smile.

Lupus changed my life forever.

I would not wish this disease on anyone no matter how cruel or evil they are.

Even my dogs are affected by lupus.

So you can’t ever say that animals don’t have compassion, because mine do.

Lupus changed my life forever.

They know when I flare and it shows.

You say I’m too young to be sick.

But lupus doesn’t care.

Lupus changed my life forever.

It tears famlies apart bit by bit.

My life has changed forever because of lupus.

I’ve learned to appreciate the simple things in life.

Lupus changed my life forever.

Dear Mr Energy Monster

August 19th, 2008



You entered my life over 7 years ago. You took away my youthful energy. You made simple things like cooking a meal difficult. They feel more like I’m running a marathon. You can leave anytime. I did not ask for you, nor did my family. You can leave me and find another home and that does not include me or anyone else. I have asked myself over and over why you came to visit me. I still don’t have the, answer to that question and if you would kindly come forward I have a few things to tell you. You’ve invaded my life like the bad sinus headache and that’s saying it mildly. I will be glad to release you anytime you can take your no good butt and leave me alone.


Not Sincerely Yours,

Chronic Chick

Chronic Chick Talk is 6 months old!!!

August 11th, 2008

It’s hard to believe I’ve had this site for a little over 6 months. It been a real struggle just to keep it up to date. I’ve been through so much in the last 6 months. Their was weeks that I could not post and other times I forced myself to post. I’m trying to be a good advocate for Lupus, Fibromyalgia and chronic pain. I hope that my words will be calming to someone’s soul that they are not alone living with these chronic illnesses that some people can not stand and commit suicide. A friend’s niece committed suicided because of lupus, so I hope you find my words helpful. Have a wonderful week and I pray that the butterflies will fly amongst you.

Getting To Know Wick Davis of The Lupus Foundation of America

March 26th, 2008

 I had the pleasure of interviewing Wick Davis of the Lupus Foundation of America.

What motivates you to continue to drive to the Lupus Foundation of America through all that Washington DC traffic?

Wick Davis Says:  First let me just say that people outside of the DC area have absolutely NO IDEA how awful the traffic is here. It is like nothing I have ever seen, and I’ve lived all over the country. It’s even awful on the weekends. I always chuckle when friends of mine from out of state complain about the traffic where they live. They have no idea. None! That said, my commute into DC isn’t too bad. I either take the bus, which is great, because I can sit and read, or relax, for an hour or so. I’m not sitting in traffic, wishing I was somewhere else. Or, if I don’t take the bus, I catch a ride with a coworker and her husband. Either way, I’m saving on gas, wear ‘n tear on my car … and most importantly, I’m saving my sanity!

What is your job at the Lupus Foundation of America?

Wick Davis Says:  My title is Director, Online Content & Community. So what does that mean? Well, it means a lot of things. I am responsible for all things pertaining to the lupus.org Website. Everything from creating new content when needed, to updating existing content, to maintaining the navigation on the Website; to ensuring the Website’s links are working, to making sure everything is spelled and punctuated correctly. Basically, my role is to make sure that users of our Website have a positive experience. I am also responsible for the Lupus Now magazine Website  and the World Lupus Day Website .

I host the monthly LFA Web chats. I am responsible for some writing content for, and the distribution of, our enewsletters. I write the LFA blog, “On the Road to a Cure,” . I am responsible for the LFA presence in Face book, and to a lesser extent, MySpace. I make sure that LFA PSAs (public service announcements) get posted to YouTube. I monitor the new LFA message boards. And since I have overall knowledge of all of these things, I try to make sure they’re all connected, and that people are aware of these great resources. For example, if we post a new PSA to You Tube, I write about it in the blog, and post it to both Face book and MySpace. Lots of cross promotion! I have to say … the one thing I really enjoy about my job at the LFA (and that I enjoyed while I was at the ADA) is the fact that I get to help people every day. Whether it’s providing timely and accurate information via the Website, or monitoring the LFA message boards, or hosting a Webchat, or writing the LFA blog … I enjoy all of that. I find it personally rewarding.

Does working at the Lupus Foundation of America have a personal connection to you?
Wick Davis Says:  Actually, it does not. Prior to my joining the LFA, I worked at the American Diabetes Association for almost 6 ½ years. A good friend of mine knew I was looking to make a career change and he had seen a position advertised on the lupus Website. He passed along the job posting to me and the rest, as they say, is history. However, after joining the LFA, I came to find out that a good friend of mine in Amsterdam has lupus. So she was excited that I was working for the LFA.

Do you have any pets?

Wick Davis Says:  I have one pet, a cat named Flip. He’s an eight-year-old domestic longhair. He’s great company and he’s pretty vocal. Flip is also my backup alarm clock. He knows my routine, and if I’m not up at a certain time, he head-butts me into consciousness. Unfortunately, I haven’t been able to teach Flip the distinction between the weekday and the weekend. So even if I wanted to sleep in, I can’t.

What are your hobbies when you’re not working at the Lupus Foundation of America?

Wick Davis says: I get into all kinds of things. I hang with friends. I love to travel and do so whenever possible. I’m into music and movies. As anyone who reads the LFA blog knows, I am into older movies. Netflix has been awesome, because you can find so many older movies there … things that you cannot rent from Blockbuster or Hollywood Video. I’m into the beach / ocean. I’m into photography and genealogy. I’m into books, reading and writing. I’m an eBay junkie. And I am a collector of original movie posters, some lunch boxes, some old board games (mostly Clue) and a few old toys. My poster collection is pretty impressive, if I do say so myself. I now have three original Hitchcock posters. I don’t know if this counts as a hobby, but I’ve recently started going to the gym and I seem to have an affinity for rowing.

What inspires you? What makes you tick?

Wick Davis Says:  Continually being challenged – whether at work or elsewhere – inspires me. Knowing that I work at a job which is ultimately helping others is great. Getting to learn and try new things at my job – like writing for the blog or contacting other people living with lupus via Face book to make them aware of Web chats, public awareness campaigns etc. – I love stuff like that. I want to really tackle the whole social media”thing.” I think there’s so much untapped potential there, from both a public awareness standpoint and a fund-raising standpoint. The challenge is finding the time – and resources – to be able to do it successfully. I’m working on that one! Perhaps if I could be cloned