I am generally very sympathetic to other lupus/MCTD patients. Some people are disabled and absolutely cannot work. Some of us, like me, have to get up every morning and go to work. Some of us really cling to that and hope to earn a paycheck for as long as possible. I fall into the category of "I would not work if I didn't have to." I am miserable almost every day, dragging into work stiff with joint pain, overwhelmed with fatigue, struggling with anemia. Sometimes my vertigo/nausea is so bad I leave work, but it's hard for my principal to get a substitute teacher to come in. So many days I go to work when my body really, really would rather rest. Sometimes I stay at work, doubled over in pain sometimes, just trying not to upset the students hoping I can just make it to 3:00.
Then I stumble across a lupus blog. I won't mention the name because I'm actually kind of embarrassed I feel this way. This lady has lupus and posts on her blog about things like how she "had to increase her daily nap from 1 1/2 hours a day to 2 hours a day." She was so glad her babysitter could extend her time so she could get a longer nap. Then today I read her complaining about how awful her week was because the babysitter had to take the week off. She was overwhelmed with how little rest she got because she missed the 4-hour break that the sitter gave her each day. Poor thing. She doesn't have to work because her husband makes a fabulous salary so she can stay home, have a sitter care for her toddler while she takes naps and chooses how she spends her time. She complains about not feeling as "healthy" when she has no sitter. Yet she managed to make it through a long family vacation in France recently.
Yes, I'm just jealous because I don't get a nap every day and nobody comes to my home to help me with cleaning, cooking, and caring for children. My husband would love nothing more than to let me stay home and be "healthier." He doesn't make that kind of money. He's scared to death I will have to quit work because of my disease and of how hard it is to get approved for disability benefits. All he can do right now is help me at home as much as possible and pray that I make it through each day.
I feel really bad today so it just rubbed me the wrong way. I'll just not click on her blog any more and try to be happy for her.
43 year old female
DX: Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds: Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week)