Posted 2/1/2008 11:50 AM (GMT -6)
People don't know about lupus or other auto immune diseases and don't really care. I know that I did not really know what auto immune disease can do until I got sick 3 years ago. I have mctd and had an extreme case which almost killed me....over 3 months in hospitals and it left me a quadriplegic who could not swallow.
Now I am functional and leading a normal life again but I am not cured and I am not the same as before. I also have the cloud hanging over me that, as we all do, that the disease could come back. My case was very unique...came on like crazy and once the doctors figured out an effective treatment I have not had a relapse. Despite that the damage to my body (lost 40lbs of muscle mass and multilple organ involvement) makes it impossible for me to return to "normal".
People who had not seen me for a while just say I look great, a little thinner, but can't believe what I went through. Most probably think it an exaggeration and some I direct to a link that has my personal story as told by the rehab hospital.
Indifference and ignorance of lupus is the rule. I guess you get accustomed to it but it still hurts. Those people who are younger and have less serious problems that come and go, and have job and family responsibilities face a tough, uphill battle against indifference and ignorance have a particularly tough time with it. I am a senior and retired and don't really have to explain or make excuses for things.
Today I look normal and healthy but I struggle to get up every morning, my back muscles are still a total mess and sometimes spasm, I am no where near as strong as before despite over 2 years of therapy and working out, and my stamina is lacking. That alone would be a big deal for most healthy people. Oh, I forgot to mention multiple problems with my GI tract that resulted from my diseases.
Try to educate those around you and ignore the rest.
Nothing is easy about lupus or other AI diseases.
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
Maintain your optimism and you can beat the odds.
"Although the world is full of suffering, it is also full of the overcoming of it." Helen Keller