MAY 2013 LUPUS AWARENESS MONTH

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Recovering From Lupus Flare Day 17

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Hello everyone, here I am in bed still but it isn’t a hospital bed, for that I am very grateful. Recovering from lupus flare or still in it is hard to say. I can usually tell the difference without endless labs, the human guinea pig we all feel like with each new drug “to try to see” if THIS one will work, or the hamster running on his spinning wheel happily..I’d be happy, elated to have my life back. All of this time gives me much to think about, would love to write about, but I don’t have the strength to write and each letter typed now hurts my badly swollen fingers.

I’m sure anyone that doesn’t know me will look at my picture & think, she looks tired but not seriously ill. Everyone else will see; my hair no longer full because half of it is now gone; the weight loss obvious in my face. The subtle signs only Lupies & Doctors see: swollen or puffy eyes means kidney issues still; the paleness of my skin underneath the red patches; how tired I am physically and every level. Tired & pain so agonizing you think to yourself as you cry yet again “I can’t do this anymore. I just can’t do this anymore”. Those thoughts of despair are normal but don’t make the flare disappear; they can harm your recovery..you have to keep your faith & hold on. Accept your circumstances & never stop believing you will push through. God works in mysterious ways, and the story below is one of my daily devotionals I receive in email. I was in a dark place until I read this email; upon completion, I was smiling brilliantly by mouth, heart, soul. I know many blessings are coming, one recent that has changed my life forever, never to be the same again, the smile on my face the joy of this miracle brings matching the one in my heart. Never give up; Hold on tight because your blessings are on the way. Enjoy the story! ~Jennifer~

Loaves and Fishes
“‘Here is a boy with five small barley loaves and two small fish, but how far will they go among so many?'” (John 6:9 )Remember the heartwarming story of how Jesus took the loaves, broke them, multiplied the fish and gave everybody lots to eat with lots left over? Jesus even said, “Let nothing be wasted.” They gathered baskets full of bread so nothing would be thrown away. I think about that story when I watch a Christian go through tough times yet hang on to God’s grace. Maybe you’re one of them. Day-to-day heartache is your routine and problems seem to have a permanent place in God’s plan for you. Yet you’re faithful –or should I say, you hold onto God’s faithfulness. What God is doing with you is like what He did with the barley loaves and fish. Jesus broke the bread. And out of the brokenness He multiplied the blessing so that thousands would be nourished. Yes, it hurts to be broken. But sometimes that’s part of His plan, especially if He wants to use you to feed others. It’s a way your faithfulness can be multiplied. Out of your brokenness, the blessing can be bestowed on more than you ever dreamed possible. And here’s the thing: If you’ve been broken by the hand of God, you can be certain nothing will be wasted. God will gather up and use all the hurt; not a bit of it will be discarded or cast aside.

That little boy with the small loaves and fish must have been amazed to watch Jesus do such marvelous things through his little lunch. Be sure that God knows what little you have to offer. Is it a bit of obedience? God will multiply it. Is it a weak prayer? A small word of testimony? A feeble effort to encourage others in their pain? I promise you (no, He promises you) that He will expand your offering. It will not be wasted.

Prayer: Brokenness is something You know all about, Jesus, for Your body was broken for me. Today remind me of how close You are to me in my brokenness and soothe my heart with Your nearness. Multiply the blessing to many through me. Blessings, Joniand Friends http://www.joniandfriends.org

Lupus Fatigue & Sleeping Through Life

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This is exactly how I feel, only my hair isn’t as colorful & clean since I can’t get out of bed long enough to shower or have the strength to take one. The mind-numbing, overwhelming level of exhaustion hit me like a freight train on Sunday, December 30, 2012 & here it is Thursday, January 3, 2013 already. 4 straight days I’ve been in my bedroom, sleeping so deeply I don’t even change positions. My only priorities during the short periods I’m awake & can physically get out of bed are taking care of basic hygiene; taking my meds & forcing myself to drink the minimum 3 liters of water daily to prevent my angry kidney from getting infected again.

There is no such thing as time, what day it is. I managed to get all the laundry downstairs on Sunday yet it’s still in the same place, the piles getting bigger daily as I change into clean pajamas, brush my teeth as I hang onto the sink to keep myself standing. Stumble back to bed, relief washing over me that I accomplished that much as my eyes immediately close and I once again sleep deeply for hours, alarm set to take my meds at the appointed time.

If you have Lupus you understand what I’m saying. If you’re loved one has Lupus, you understand as well. Most other people don’t understand, which is frustrating & sometimes hurtful to hear statements like “get over it”, “you’re depressed, here’s an antidepressant” or my favorite, “the more you sleep the more tired you feel”.

I can’t “get over it”, I’ve tried a million times & accepted that when this happens, my body is telling me to sleep for a reason. I am not depressed & do not need another pill thrown at me, although depression & Lupus is very common and the stigma of depression itself in the world still exists today. I don’t have the energy to feel any emotions quite frankly but I seek moments of laughter, smiles & love to sustain me. I manage a few prayers before slumber overtakes me again.

I am blessed to be able to sleep like this, knowing my son is safe with his Dad. They stopped over yesterday afternoon to bring me a container of food, knowing I’m not eating because waiting 5 minutes for the microwave to heat up anything is 5 minutes too long for me, but it was nice to see them both & I appreciated the meal.

It’s 11:45am right now; I’ve been awake for exactly 3 hours but it’s time to go back to sleep..I’m actually nodding off now trying to finish this. I have many beautiful birthday wishes on my FB I still haven’t had the strength to read, but just knowing they’re waiting for me is a lovely gift! I’m truly blessed to have so many loving friends!

Good night for now! I may not be posting much but I’m reading my fellow bloggers posts as they come in & I always lift every one of you up in prayer. Enjoy the beautiful sunshine!

Back to slumber,
~Jennifer~