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Lupus awareness
Posted by gckovarik to Disease/Illness, Oct 9, 2009 12:18pm
I am a 31 year old happily married mother of 4 liviing what I thought was my american dream. Until unexplainable and some times embarassing things started happening to me, such as my hair falling out in patches not having enough energy to stay awake all day no matter what I did, my hands hurt so bad in the mornings that it became difficult for me to write notes to my childrens teacher. People would tell me that i am jsut being lazy or I am to stressed out. I have since found out that I have Lupus and that is the cause for all of these things. But what was Lupus? What did it mean for me? Nobody knew anything about it not even my own GP knew much. In a matter of a 2 year period I went from a healthy young energetic mother with my whole life ahead of me to now not having the energy most days to even play with my kids. People still tell me that i am just being lazy and that it is not as bad as I am saying because nobody knows anything about this disease which is shocking to me because it affects mostly women in the prime of their lives. I was so shocked that even people in the health care field know so little about this disease. Please help us all understand a little more about this terrible disease. Thank you for listening.
DDHunter
Oct 10, 2009 11:39am
I too have been having the joint pain, in all my joints. I have tested negative for any type of arthritis, I had a positive ANA test, but I did not have enough positives for my DR to diagnose me with Lupus.
danielle1980
Oct 12, 2009 8:55am
Yes i agree !! I myself have had Lupus for 17 years and I am 29 years old!!It needs some ATTENTION!!
danielle1980
Oct 12, 2009 8:55am
Yes i agree !! I myself have had Lupus for 17 years and I am 29 years old!!It needs some ATTENTION!!
dflore8
Oct 13, 2009 1:10pm
I just posted one for all autoimmune diesease but specifically Lupus. I worked fulltime, have two kids and was expected to do all the other "Supermom" duties. I suddenly started needing naps at lunch and after work, my joints hurt so much that i couldn't type, and then my hip went out. I had a doc that figured it out that i have Lupus and RA. I had to stop working completely. the ana test was positive but the lupus he checked for almost a year before it was positive. turns out when my DHEA levels are really low is when my Lupus panel shows positive.
hail3igh
Oct 13, 2009 2:11pm
I am a 33yr old women.. Happily married with 2 great kids.. I was diagnose with lupus 3yrs ago, but spent years trying to find out what was wrong. I have been on a down spiral since then.I can not work or carry out simple daily tasks like I use to. It would be nice to be me again but that is not an option and something many like myself have to deal with.. I have noticed that there is never any medical type shows that discuss lupus or auto-immune disease unless you include House MD(real solid advice lol) and they mentioned it on Fringe a few weeks ago.. It would be wonderful if the producers of The Doctors would do a show on this. Everyone knows someone with it but they dont know what it is or what it really means for the person and family that is dealing with it day to day. I hope they will concider and I am sure the Lupus Foundation of America would help out also.. thank you for your time.
pammiej
Oct 13, 2009 4:54pm
I have been living with Lupus for 26 years. By the age of 18&19 had both hips replaced due to Avascular Necrosis, The Lupus, and Steroids... Heart Cath by the age of 32...On disability at 31. The drugs that are being used right now for Lupus are not doing their job. We desperately need more research to be done and awareness to the public. This is a disease that effects millions and is very often fatal and yet the public hears very little about and not in great detail. It is so much more than just a rash and flu like symptoms. Please helps us bring more awareness to this horrific disease!? Thank you.
WAZYDJ
Oct 13, 2009 5:14pm
We HAVE TO get the word out about Lupus!!! I've had if for approx. 14 years...I'm 37 now!!! I shouldn't have to feel old in the prime of my life!!!
bikergirl
Dec 9, 2009 3:07pm
I am 47 years of age and have had lupus for 10 years. I have experienced muscle and joint pain, fatigue, swollen joints, raynaud's phenomenon, and recently sever dry eye syndrome resulting in recurrent blepharitis. I am a licensed practical nurse and work is sometimes difficult because of aching in my legs from frequent walking, and sometimes muscle spasms. It would be very informative for myself and others with the disease to have a show focusing on the disease. It is widespread, and you don't hear a lot about it. There's a lot of focus on diabetes, heart disease, even sickle cell disease, but you hear absolutely nothing about lupus. D. Thornton