Lupus Cries But I Don't Follow

It's Saturday night and I am sitting here in tears. I have swollen legs and arms, a fever, bleeding gums, a headache and an upset stomach with diarrhea. No I do not have some crazy virus it's my Lupus. It's bad my friends and the crazy thing is that I keep on going. I try to hide it the best that I can. I don't want to stop living just yet. I don't want to surrender my body to something that has already stolen so much.
I just came back from dinner with friends and I guarantee no one had a clue. It was my little secret. I felt like my body was crumbling as I asked for another glass of tea. I had the shakes, so I blamed the air conditioner. I went to the bathroom 4 times, I blamed the tea. The sauce burned my open sores in my mouth, I blamed my braces. On and on the list goes. Day in, day out the excuses slip from my lips. The little Lupus lies I tell in order to enjoy my life. I always joke around with Thanh that one day I will drop dead and everyone will go what happened? What was wrong.....it was so sudden.
Tonight was pushing the envelope I think. I wonder how long I can do this. I feel a depressing mood sweep across me tonight. What better way to spend it then with my blog friends. The friends that know me best. You know all my dark secrets, yet still choose to come back. Why do you come back? :-)
Tonight the pain is very hard to deal with. You may wonder how many pain pills I will swallow to get some shut eye tonight. Actually, tonight when I lay on my bed I will do what I do every night. I am going to embrace all the pain I have. It's like I will almost introduce myself to it. I will mentally say something like Hello left leg. I know you are swollen and in pain. It feels like you are on fire with knives sticking in you. I embrace you with a warm hug. I know you will not be here when I wake in the morning. You will be gone and I will be able to walk in the morning, Thank you Lord. Then I will talk to my other leg and then my stomach and ever other part of me. I say over and over that tomorrow will be a better day. I know this sounds crazy and if you choose to never come back I will understand. :-) This is just what works for me. This is what gets me through the pain. This is what keeps me from crying and screaming when I fear I may not wake up because the pain is too much to bare. There are times when this will not work. One of the times is when I have pleurisy. Several times a year my body develops fluid around my heart & lungs. The pain is worse at this time then almost any other. During these times I have to be sedated, not even my prayers and imagery can get me through alone.
Praise God, tonight is not one of those nights. So, I will pull myself up by the boot straps and get through another night. Hmmmmmmmmmm, I think I will talk to my tummy first.
Hugs to ya'll out there!


  1. i am so sorry

    you are so brave and a fighter

  2. I am a new follower and will continue on by your side. I have fibromyalgia but have now been able to keep it under control with Cymbalta so I know daily pain but not like yours. Just know people are listening and praying and are your friends old or new.

  3. I hope your pain was less on Sunday and Monday. Keep fighting the good fight!

  4. I'll pray along with you. I'm so sorry my dear friend.

  5. I was just thinking today that living with lupus requires playing a pretend game a lot of the time. Not just by us, but by those who love us. Our loved ones take their cue from us don't you think? Smile, and they smile. Cry and they are lost.
    I love the part in your post where you embrace your pain - it sounds like a practise by Thich Nhat Hanh, the Zen master. Really wonderful practise. It is amazing that you are able to do it.

  6. Sheila: my heart aches for you as I read this. I know you aren't one for sympathy but dear, you need to let it out and I am glad you are doing that on this blog. You just go ahead and talk to your body. If it works and gets you through then please do it. You are not strange and you won't run me off. Take care and I am praying for you.

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