Thursday, November 4, 2010

Blank Pages...Blank Life

Sunday I found a single carnation in a vase and a card outside my door. It was from my church. Once a year someone brings a flower. Once a year.

When I'm sick, no one calls. When I'm in the ER, no one comes. When I'm in the hospital, no one visits. This is over several years now. My health has steadily gone down. I'm stuck inside more than I ever have been in the past. If it were not for Sandy, I'd never get out. Then again, the majority of my outings are to do the doctor, hospital and grocery.

No one encourages me. No praise for doing something right. No hugs. No laughter. No family. No group of friends. And now the holidays are hitting me hard. I have no desire to put up a tree this year. No desire. Already the Christmas and Thanksgiving shows and commercials are invading the air ways. I change the channels with light speed. I wish I could make the holidays go away.

This year is hard. It has been horrible. The last thing I want to do is celebrate it, stand in someone's home for an hour and "pretend" to be a part. I don't need a family for an hour a year. I need a family 365 days a year. Why is that so hard to understand? Compassion, love, encouragement. I feel more empty than I've ever felt before. If I were attached to a plug, I'd pull it from its source.

What would help me live? Move from the place where I am right to do it. A place to live. A safe place. A quiet place where I can write again. A miracle. I guess it would take a miracle.


  1. Hi there - I stumbled across your blog when I was searching for help with lupus pain at night. I noticed that we have some similar conditions - I was put on a CPAP not that long ago and also had high hopes to feel better once I was caught up on sleep. My muscle pain has improved, and the fatigue is a little better, but not as much as I hoped. I was moved to tears by some of your posts, as I recognize myself in them. I think lupus can be a lonely disease. Other people think you look fine, and it's hard to explain how you can look normal, but can still feel like you have a lead blanket pressing down on you and have such pain and fatigue that just putting one foot in front of the other is an accomplishment. I noticed that you mention God in many of your posts, and I have a feeling that it is not "random" that I found your blog tonight. Your words about loneliness are actually helping me not feel alone in my pain. You weren't expecting that, huh? Anyway, one thing I do know is that I get strength and comfort from my relationship with Jesus. Without the knowledge that I was made perfect in Him, even with all the problems I have in my body, I would focus so much on what is wrong with me and not be able to find the good that truly is worth living for. Thank you for putting your real feelings out there- I am glad I found your page tonight.

  2. KP -

    I hope you stop back by here again. I cannot tell you how much your post meant to me. Sometimes it feels like I'm screaming and no one hears the tree that falls in the forest. Does it make a sound if no one is around?

    You helped me far more than I did you. Your words lifted me up, confirmed I'm not crazy, encouraged me. It has been a long time since someone has understood and encouraged me.

    Thank you is not enough.

  3. Hello again! So glad that we can comfort each other. Lupus is such a weird disease, and everyone feels different and has different symptoms, but one thing that we all feel is the fear that comes with not being able to control what is going on in our bodies. That is tough.

    My email address is in my profile if you would like to continue this "chat" over email.