Saturday, February 16, 2013

KNOWING lupus KNOW IT SUCKS LOL

Hi Everyone!
 
I am feeling OK this morning. Not so much pain and my hands feel like they are working today. I have had a lot of emails asking me about lupus. ( I never capitalize diseases.) So I thought I would give a bit of info.
First I have been living with lupus for 14 years. Before that, illness and medical problems were never associated with lupus until after the fact. I had a doctor that went over my past with me and at every point told me what was directly related to lupus.
If only I had known. LOL
Second, I work hard to keep healthy and I have made the choice to do it with herbs. I do NOT take any lupus meds. This is my choice and it works for me. Please if you have lupus or any other type of autoimmune talk with your doctor before making any changes to your care.
 
What is lupus? (other than is sucks? LOL)
Lupus is a chronic inflammatory dis-ease that can affect various systems of the body, especially the skin, joints, blood, kidneys, liver, digestion, lungs, heart, eyes, and brain (CNS)  The body's immune system normally makes proteins called antibodies to protect the body against viruses, bacteria, and other foreign materials.  These foreign materials are called antigens.  In an autoimmune disorder such as lupus, the immune system loses its ability to tell the difference between foreign substances (antigens) and its own cells and tissues.  The immune system then makes antibodies directed against "self."  These antibodies, called "auto-antibodies," react with the "self" antigens to form immune complexes.  The immune complexes build up in the tissues and
 can cause inflammation, injury to tissues, and pain.
So in other words your body attacks itself. Sounds like a sci-fi movie doesn't it?
 
There are three types of lupus. Discoid (cutaneous) which mostly effects the skin. 
 
Systemic lupus is usually more severe than discoid lupus and can affect almost any organ or system of the body.  For some people, only the skin and joints will be involved.  In others, the joints, lungs, kidneys, blood, or other organs and/or tissues may be affected.
 
The third is drug induced and this is important to know;
Drug-induced lupus occurs after the use of certain prescribed drugs.  Check it out here.
 
So that is the basics of what lupus is. Of course I have SLE (systemic lupus erythematosus)
Every part of my body is involved and the older I get the worse it seems to be. A part of the time I am up and running. This is "remission" when I am not feeling well this is called a "flare". No two people have the exact same symptoms. So if you suspect that you may have lupus do some research and talk with your doctor. There are specific testing now that can detect if you have lupus. In addition a new medicine, the first in 50 years. Took em long enough right?
 
lupus for me effects my central nervous system, (CNS) stomach and digestion, bones, muscles, blood, eyes, and lungs. How fun is this??? LOL NOT.... The flare I am in right now is more like a raging fire. Fear not I do have extinguishers!!  I will not allow lupus to win. I will not give into its army that attacks me from the inside out. I will not loose!!!! lupus can be difficult to live with. There are many who bead that live with it and we do OK. Support is important and I thank each one of you for sending wonderful well wishes, healing energy, and prayers.
May health abide in us all
 
Here are some wonderful sites to check out. 
 
This is me with my mom, last year when I was feeling pretty well. 
 Mom is 82 here. Doesn't she look great?


 
 Honor and Integrity in Life in Art
Nicole/Beadwright


 

14 comments:

  1. I hope that you get this flare under control sooner rather than later.

    Your mom does look great for her age. Our mothers are the same age but my mom looks older; her arthritis pain has aged her.

    ReplyDelete
  2. Dear Nicole,
    I wish you all the best! I hope you get the power to win and that you have the intuition to do the right things finding the therapy which gets you well!

    Greetings
    Ulrike

    ReplyDelete
  3. Oh, Nicole - you fight so bravely, I'm sending you healing thoughts and best wishes. Your mom looks amazing, indeed - you two look so well together :)
    Hope you get it under control soon - take good care of yourself!

    ReplyDelete
  4. Thank you for all this information, Nicole. Lifting up prayers that you'll soon be over this flare and back to beading again. Aloha, Peg

    ReplyDelete
  5. Nicole, I am so sorry and hope you're able to get it under control as much as possible. Thanks for the link on meds; off to read it now.

    ReplyDelete
  6. I am also hoping this flare up gets under control fast. Thank you for all the links and information about lupus. I had no idea.

    ReplyDelete
  7. I forgot to add how beautiful your mom is. You are both blessed to have each other.

    ReplyDelete
  8. You both look great in that photo! I certainly admire you for your strength! Keep fighting and I'll keep sending healing thoughts!

    ReplyDelete
  9. Dear Nicole,
    it was a pleasure for me to read that You use herbs for Your health.
    Your Mom, both of You, look great,She doesn't show Her age.
    Wishing You Health, to win the fight against lupus,

    Zsuzsa

    ReplyDelete
  10. You are right Nicole, you are stronger than lupus and YOU will win! Your mom looks terrific! A great picture of the both of you! Sending healing energy your way!

    (((HUGS)))

    ReplyDelete
  11. Your mom was 82 in that photo! Bless her heart! I have to agree with Deb, you both look great in that photo!!! Nicole, keep kicking ass!! I'll keep sending healing thoughts! Enjoy the book ;o)

    ReplyDelete
  12. thank you for the explanation. I have a few friends that have lupus, but was never comprehending what they were telling me when I asked what it was. Your explanation was very easy to follow, without making me feel dumb. lol.

    I wish you health and well-being. I hope the flare you are experiencing subsides quickly.

    ReplyDelete
  13. Hi Nicole,

    I'm so glad you explained lupus in your post. I feel so badly for you having times of "flare." It must be just awful. It seems as though you have paved a way for yourself in finding some relief for the disease. Sometimes I think that is all that we can do is to keep on looking, researching and studying our particular problem/disease. I am doing just that with my knee problem. Although it is nothing compared to what you are going through, it has taught me empathy-a quality I didn't have before. I refuse to have a knee replacement until I explore all avenues, like you have. I hope you have many days of remission and happy beading times.
    PS: Your mother looks incredibly good for her age!

    ReplyDelete
  14. Thanks for the great content on antibodies.

    ReplyDelete

I am sorry I had to put a word verification for my comments due to the unsightly spam comments against women. Please take the time to leave me a comment. I love hearing from you.