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.
Hi folks,
i was dx'd with Mixed Connective Tissue Disease (Lupus, Scleroderma and Polymyosits) and a bunch of other conditions 10 years ago. My main symptoms and joint, lung and fatgue issues. I've managed to work full time through most of that and support myself. I'm finding though that in recent years its been getting harder and harder to take care of myself (my mom does most of my cleaning because i'm so exhausted from working). I've been in a mild flare for the last 2 weeks, which i'm seeing my doc for soon. I'm starting to think that maybe working full time isn't right for me. I've been on disability once, but was able to come back to work. In the short term i can do that again, but long term i don't think its necessary or a viable option.
I guess i'm wondering how other people with similar illnesses are doing? I know we're all different, but i guess i want to hear if i sound nuts for working full time when dealing with chronic illness? If i reduce my work hours, i would have to move in with my parents and give up my condo. Not exactly something i want to do, i like my independance. But i have to put my health first. I wish i knew what to do.
Anyway, i'm just curious what others's situations are like. If while dealing with your illnesses you can work? keep up with house work? have a social life?
Thanks
I just read your post, and it nice to see that one can live a somewhat normal life. I have a 10 year old son who was diagnosed with Lupus. He currently has a Sedimentation rate of 24 and a CRP of 2.50 with a ANA Ttr of 1:3:20 and of course a critical vitamin D level of 14 which didn't seem to change even after he was placed on 50, 000 units twice a month. These Labs where done after he collapse in the emergency room. After that scary ordeal he was admitted to the pediatric unit. From there he will be seeing a pediatric rheumatologist specialist with John Hopkins Hospital. I am so tired so tired. My son was a healthy baby and for the most part child. He started getting sick a year ago, before that he was in football, swimming, martial arts, you name it. As we continue with are journey I will take comfort in knowing that we can have a normal life regardless of this disease.
Vitamin D was a tremendous help to me, but I was given more than your son. My SedRate was almost 100, so I also needed prednisone for awhile, but am no longer on prescription medication. I discovered that gluten was my enemy and began a gluten-free lifestyle. I try to eat well and healthily (such as grass-fed beef), avoid ALL artificial sweeteners, and clean with baking soda, hydrogen peroxide, and white vinegar. Plus, I use a phosphate free dishwasher detergent and shower with Kirk's Castile Soap. Environmental toxins can add strain on my body.
Try keeping a food and health log on your son. You might find a connection between certain foods and his health. Also, ask your doctors to check for other nutrient deficiencies. I was deficient in Vitamin D too, but also magnesium, B-12, etc. And one doctor discovered that I had a chronic Epstein Barr Virus problem, so she recommended a supplement called Lauricidin that seems to keep the EBV in check. Glad you will be seeing the pediatric rheumatologist at Johns Hopkins. Hope you find things that help your son get back to his former normal life. Best wishes to you and your son.