How nice for her, I'm jealous

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. 

 

Lynnwood couldnt have said it better!! I agree 100%. I have had these same feelings and have learned not to visit their personal pages or blogs. It is really upsetting. Hope you can catch a break soon!!!

Heartsong-

I feel the same way when you say you would rather stay home than work. I am not in the working world yet, but I do go to college. It is my last semester to get my bachelors and i am either going to go to graduate school or make my way into the working world. however, i dont know how i am going to do it because i am super tired all the time and can hardly function. i have eight doctors and am having to go to appointments all the time. i dont see any job letting me go to appts all the time. im super scared for my future and cannot live off my parents for the rest of my life and surely will not get anything with disability.

I'm so sorry for all you are going through. I feel the same way at times. My husband does make enough money that I could quit work if we made some life style changes, but he recently told me that if I quit my job, I would not be welcome in the home that I help him pay for and that he would seek a divorce. His reason was that he doesn't want to make life style changes, he wants to spend money on foolish things. So I go to work, as a nurse in a hospital trying to keep my home for the sake of my children. Please try to feel good about the fact that your husband does support you and wishes that he was able to let you stay home. not all of us have that kind of love and support. I will pray for you!

DearHeart, Sometimes it's all a matter of perspective. I could say that I'm lucky that I'm at home, but mostly because even if I did work it wouldn't be enough to cover the gas and cost of sending my 2 1/2 year old to daycare. He's utterly exhausting even for a healthy person and especially sine I can't really spemd much time outside with him. I've spent the last four years feeling like a zombie most days nd now after almost 3 month of methotrezate, I'm finally starting to get some energy back. I'm still having pain issues that require more pain meds then any employerer would ever hire me on, so I've got to just try to make the best of things. Keep searching for the right meds to make you feel better and keep looking for the assistance you need. My husband is a house painter and we live in a rather rural area hit very hard by the crumbling economy, if it wasn't for medicaid we'd be in very bad shape. I'm waiting for my third appeal for SSI now into year 3 of this process. If you think you will need disability, get a lawyer and get it going because it really takes a long time. Take care and od Bless.

I hope everyone is doing well....at least well for where you are in your journey. I too, had to work through my flare ups. I was in a flare up for years and never thought I could not go on anymore. They were bad at times, I just come home in sat in the tub and pass out in bad. Don't lose sight that you are doing the best you can.

Welcome Lupiecyn....I am glad you found us.