
Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hugs for ya,
Niecy.
(((Hugs))
EllaBlue
I am 30 years old and have been living with lupus since about age 19. I have always been treated as though I was not as sick as I was, or that it was in my head by doctors, and loved ones. It's very frustrating, you feel like no one understands the overwhelming pain and fatigue. It's hard for others to understand how one minute you need to lay down before you pass out, and then hours later you are feeling "normal".
In June of this year I had a really bad skin flair, and was put on prednisone. This did not work, so they upped the dose to 60mg per day. After months on this, suddenly, it was extremely painful to walk. My bone scan came back normal, and my doctor asked me how my "mood" was, as though this was all in my head. After many harrassing phonecalls, I convinced them to give me an MRI. This revealed that I have bilateral aseptic necrosis. (Basically the bones in my knees are dying due to lack of blood supply. This is caused by the prednisone that I am on, and because it is dangerous to go off pred. right away, I am still on it. I am now wheelchair bound. Was sent to Ortho who said the condition will last at least months to a year they want me to get a second opinion, where I was refered to can't see me til April. Don't know if I will need surgery. I feel as though my life is in suspended animation. I hate being dependent on those around me. Can't support myself, waiting on disability-hopefully I will qualify. Because doctors and the gen public don't understand Lupus, they don't take it seriously. So frustrating
You have to keep fighting and believing in yourself. You will find the right doctor, sometimes it just takes lots of hard work.
The next time you go to your doctor be blunt about not feeling you are being listened to and explain that you will be taking your business elsewhere if you are not given better treatment. Remember, your insurance money is paying the doctor's mortgage. They are just people like the rest of us and occasionally they need a kick in the rear to get them to wake up.
If you do decide to go to a new doctor be upfront in the begining. Tell the new doctor what you expect from them.
This is not advice I came up with on my own. An ER doctor told me to do these things after my I kept ending up in her care because my own doctor kept ignoring my concerns.