3.02.2009

Help Me find a Cure for My Disease...Please.

Most of you all know that I suffer from Lupus. I hate to say suffer, but I do. My whole family suffers.
Basically Lupus is when your immune system attacks your organs and body instead of all the bad viruses, bacterias and such that a healthy person's immune system would.
I'm in constant pain and most days I find myself thankful for just getting a bath ans my family fed on any givin' day. My joints swell sometimes to the point that I can't put on jeans or write because I can't hold a pencil. I have sores in my mouth from the methotrexate I have to take ( it's a form of Chemo). This is what suppresses my immune system, which also means I catch everyday illnesses easily. Mahala can get a cold and I will catch it. But it will turn into pneumonia and I may also develop a UTI or other sicknesses.
I have several autoimmune diseases as a result of my lupus. Rheumatoid arthritis is one of them. I take around 40 pills a day and some days I am so nauseous and tired that I home school from the couch or bed. I am very thankful for my good days, every morning when I open my eyes I slowly draw in my first conscious breath. I pray that I can move and get through the day. I pray to be able to have a "normal" day with my children. And when I can't and Thanh has to help me to the bathroom or when I just can't make it at all, I pray for another chance. Another chance for my body to get it right the next time.
Did you know that it has been over 50 years since there has been any advancements in the medical world regarding Lupus? No new treatments or drugs. That makes me cry and makes me fearful. It makes me feel hollow inside, like I'm lost and never to be found. I want to scream!!!!!! We are dying here people, help us pleeeeeeeease!!! Our children are going to be Motherless and Fatherless!! We are in pain and full of fear just praying for relief and comfort.

Today, March 3, 2009 is the Lupus Foundation of America’s 11th Annual Advocacy Day on Capitol Hill. Even if you cannot physically join us on Tuesday, there are still several things you – and your family and friends – can do to help raise awareness about the seriousness of lupus. Before I developed Lupus I had never heard of it before. Have you ever heard of it?

Fifty years is too long to wait for safer, more tolerable and effective FDA-approved lupus treatments. Help the estimated 1.5 million Americans living with lupus by being a part of the "Call-In to Congress" component of the Lupus Foundation of America’s 11th Annual Advocacy Day on March 3, 2009.Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and click on the link called "Call your Members of Congress Tuesday, March 3rd!" Then, you’ll enter your zip code and get the phone numbers for your elected officials.The other thing you will notice after you’ve entered your zip code, is that you will also see a guide of Talking Points for when you speak with Congressional Staff. Use these talking points to tell them how having lupus or knowing someone with lupus has affected your life.The link to the LFA’s advocacy action center again is http://www.capwiz.com/lfa.Together, we can change the future of those affected by lupus.
PLEASE, I know that we all say what can ONE person do. But, I am here to tell YOU that one person can do A Lot. What if you are the one that made the difference. It was the straw that broke the camel's back so to say, but in this situation it would be a positive thing.
Please stand up for me and everyone in this world who has Lupus on March 3rd. Please pass this info on to EVERYONE that you know that breaths air. Plaster Manic Mom all over the place and let's make a difference in the lives of Many!!!

You can also Send an e-card to your friends & family. Raise awareness about lupus and the need for new treatments by sending your friends and family an e-card. Go here to send an e-card.
Donate. With your donation we can continue to fund cutting-edge lupus research. Go here to make a donation.

There is one very simple thing you can do in Facebook. Below is suggested text that you can use for your status on your Facebook account for Tuesday, March 3, 2009. Encourage your family and friends to change their statuses as well.
"YOUR NAME is encouraging friends and family to support the LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa"
If you have a Twitter account and are joining us for Advocacy Day, you can "tweet" your Advocacy Day experience. You might want to post updates such as "Heading to Capitol Hill now" or "Meeting with Senator Young."If you’re not able to be on Capitol Hill, you can still use your Twitter account to encourage people to call their Senators and Representatives, and raise awareness about the need for new, safe, tolerable, and effective treatments. Below are some suggested "tweets."

"Support LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa""Join me and call Congress and tell them 50 years without a new FDA-approved lupus drug is too long. http://www.capwiz.com/lfa"

Leave a comment or email me if you posted this info on your blog, told family and friends, donnated, contacted Congress or even prayed. Anything is better then nothing. Love to All!!!!

19 comments:

  1. THANK YOU FOR THIS.

    I shall tweet it on twitter and feel FREE to leave some info in my comments and I will bold it for you like I do with MY comments.

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  2. STopping by from My Therapy.

    Sorry to hear that you have Lupus. I know its a horrible disease. I have Sjogrens and Fibromyalgia. So I spend all my days in pain and exahusted. Have you been to bydls.com? Its an awesome site, you at least need to read the Spoon Theory. It explains how we feel so well.
    Good luck.

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  3. THANKS for the info!!

    I will tweet about it today!

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  4. I updated my Facebook status with your suggested content. Also just tweeted a link to this post. Later, I'll Tweet the same thing that's in my Facebook status.

    I have an autoimmune disorder. It's not Lupus, but it makes me have a hint of understanding of the misery other ppl, including those with Lupus, experience during an autoimmune affliction.

    Here's hoping today is fabulous for you. :-)

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  5. shared this....i use the service lupuspickup all the time...i hope that helps a bit.

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  6. I'm sorry you're having to go through this. I am in the midst of trying to get a diagnosis for my various symptoms...thinking it might be lupus.

    Take care of yourself.

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  7. FYI: The text you suggested for the Facebook status is too long! It gets cut off and the link won't work.

    I edited it to this:

    is encouraging friends to support LFA’s Advocacy Day. Tell Congress 50 years without a new FDA-approved lupus drug is too long http://www.capwiz.com/lfa

    And it fits now. Thought you might want to update your post to reflect something similar!

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  8. I'm tweeting this for you and thanks for writing this. I have two people close to me fighting this..my hubby has Crohn's, I have Psoriasis...autoimmunes affect everyone involved! *Thinking of you!*

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  9. Hello. I found out about you from twitter on the MomBlogger. I will post news of this on our blog at the Peace Communities Solidarity Blog today.

    My sister died of Lupus a few years ago. And I am still not over it.

    Love for the people,

    Solidarity for a better world,

    Love for the people,
    -T

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  10. We are praying for you. I have a friend back home with Lupis and another friend with MS. My hubby Has a heart transplant & takes imuno-supressant drugs, to fight rejection. So I have seen/experienced first hand how hard daily life is, for people with cronic illness, and how it effects their families. Glad you are raising awareness about this disease through your blog. God Bless you.

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  11. you are so right...not being there doesn't mean not participating! i llove it! and i prayed for you for pain relief and protection...you poor thing!

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  12. Oh I am so sorry you deal with so much pain daily.
    I will certainly do what i can today and have twittered and put something on my Facebook as well.
    Blessings.

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  13. hey there Manic Mom ... thank you so much for sharing this information with your followers. Every bit helps! We really appreciate this. :-)

    Wick

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  14. I am stopping by from Tena's blog! I hope you can get this cause the attention it deserves! I will tweet!

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  15. Wow. You are incredible!

    Thank you so much for all of the info anf for sharing your story!

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  16. What a fantastic post! You really made your pain and your life real and I'm sure inspired many to advocate for us. thank you! I'll be back to read more :)

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  17. I will link to you today and do all I can. I did not know very much about it. How old were you when you were diagnosed?

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  18. You may want to check Dr. Joel Fuhrman's site. He's treated thousands of patients with lupus through nutritional means, without drugs. There are testimonies on his website.

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  19. (((gentle hugs))) I know all to well what you are going through. I, too, hope they find a cure and soon!

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