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
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,
Millions suffer daily fighting all diseases. Some are “invisible” like mine is with Lupus, because if you saw me you’d have no idea the war being battled inside my body as I’ve heard endless times “But you don’t LOOK sick!”..no, I don’t, unless you see me on a day where my joints are so stiff I’m walking like Frankenstein, swollen joints all hidden by clothing with the exception of my hands. You can’t tell that my shower drain is clogged with clumps of hair every time I wash it. You can’t see the adhesions that are throughout my entire abdomen on the inside, wrapping themselves around & attaching to my bowel, liver, kidneys. You can’t see the scarring throughout my liver and left kidney or the level of inflammation throughout my system, but it’s all there.
Those closest to me that have walked this journey with me, supported me, can hear immediately in my one word Hello upon answering the phone that I’m not having a “good” day. The most frustrating part of these invisible diseases is the not knowing how you’re going to feel from one day to the next, even one hour to the next. You have to learn, plan every detail based on your level of strength for that day especially during a flare. It is challenging to say the least, but my Faith & my personality don’t allow me to stay down for long, which is a Blessing I receive constantly throughout every day.
How do you get to this mindset? The image above sums it up perfectly…
SURRENDER. I surrender All, arms outstretched, wide open, heart, mind, body & soul in complete alignment as one. Surrendering does not mean giving up or losing hope. It means you make the conscious choice to let everything go: the mistakes, the failures, the bad memories, the sadness, the heartache..anything that is negative so you can open yourself to all that is good, remember the beautiful & keep it close to your heart like your favorite blanket on your bed tucked up underneath your chin on a cold winters’ night or the scent of cologne on your pillow giving you dreams of memories that are indelibly marked on your heart forever.
I learned how to do this long ago but since I’m a mere human I slip back into old mindsets, trying to control what is happening in my life, my body. It doesn’t work, ever. Thankfully, I learn from my mistakes easily, ask forgiveness when I’m wrong & forgive in kind. I have the ability to release the negative and focus on the positive, which makes a huge impact on my daily life. It takes practice to achieve this mindset of peace but once you feel that peace that warms your very soul you’ll decide immediately to maintain that peace because it gives you strength, security and love. I get that level of peace only through my faith & prayers.
Yes, I have an illness that’s made me a complicated patient to treat but this is a complicated disease. I know from experience when I need a spiritual tune-up because my body tells me so. I may not listen all the time right away but I do listen, and I feel the physical shifting of energy that is occurring at a strong level right now, pushing me toward the lightness I keep in my soul. The Light of Love, my core being, my Divine purpose for living. The words “I am Love” keep popping into my head lately even while sleeping. That is my message to look within, reflect on recent words, actions or inactions and give myself an attitude adjustment. That act in itself alone is very freeing, healing.
2012 is coming to a close, a year overflowing with tremendous change, challenge, grief, growth and renewal. The Christmas break from school has given me the gift of precious time alone with my son for an unprecedented 10 consecutive days facing our first Christmas as a separated family, which was more painful than I’d thought it would be, nothing at all to do with Lupus, everything to do with continuing our new life together.
The painful moments brought us closer together, gave each new respect for each other, deepened our profound love for each other. We laughed louder, stayed up until the middle of the night just talking & being together. So many precious moments that make me want to freeze the clock to continue sharing this time.
Tomorrow will arrive, bringing our time together to an end as it’s his time to be with his Dad. My birthday is New Years’ Eve, the first as a single woman and the first birthday I’ll be without my family. I’ll be on my own, alone, but not lonely. It will feel strange I’m sure, but it’s my Birthday. What a year it’s been and I look forward to the year ahead with much hope, love, confidence and vision. I will indeed be celebrating myself on New Years’ Eve!
I envision many great things for my life; if you don’t think BIG, shoot for the stars with all you have, you will be continuously disappointed. I believe in second chances & give them; why not do the same for myself? Our thoughts affect every aspect of our lives and I choose to not only believe but SEE myself healthy, healed and continuing to learn, grow, love. It will all happen because I Believe and See that it will.
Everything in life is based on love & circles back to love with every step forward, every stumble aside. Love is who I am, just one of my gifts but definitely the most influential as I am dedicated to helping others in whatever capacity I am led to do so. It’s time to surrender..
I Surrender to All.
I can’t remember the last time I felt this sick for this long. I hate to say I’m suffering because I am more than aware there are so many people that are in much worse conditions than I.
It’s difficult for me to write about Lupus because I know how lucky I am to be given the gift of another day when I shouldn’t be here to write this. I know, as do my family & loved ones, how many times I’ve cheated death. That in itself is still impossible for me to put in writing, my experiences I not only survived when all Doctors believed I wouldn’t, but each individual near-death experience I remember in vivid detail. I think about those times, the emergency surgeries, being on life support hearing all medical personnel either screaming “We’re losing her” as they worked feverishly to bring me back from complete cardiac arrest or “It’s time to get her family here ASAP because she won’t make it through the night”. I could still HEAR, but nobody could hear ME screaming in my head, “NO! I’M NOT DYING, STOP SAYING THAT”. Those are memories I’ll never forget unlike the thousands of wonderful, loving memories erased from my brain in minutes from my stroke.
I know that God is working in my life especially now. I know the memories I wish I had are gone for a reason I’ll never understand but have faith in not knowing. I know I remember in stark, minute detail every second of every life-threatening situation for specific reasons: to be thankful for every second of every day I’m alive regardless of how I feel; to dedicate myself to being the best Mom I can be; to always reach out to help those in need; to challenge myself to not give up or give in. Living with Lupus isn’t really living when a flare is prolonged and complicated.
This week & last blend together in a blur of pain, no appetite, forcing fluids to keep my kidneys flushed, my hair falling out in clumps, the sheer exhaustion of simply brushing my teeth to name but a few. It’s very easy to get depressed, angry, frightened because you’re helpless. You have to ride it out for however long it lasts. Stay the course, keep your faith that the suffering isn’t for naught.. your attitude is more than half the battle. I hold onto my faith for dear life & will never give up. Living with Lupus is hard, so very hard. I don’t feel sorry for myself & don’t want you to feel sorry for me. I’m waiting this out with determination & faith. Isn’t that how we all should be living? I believe so! Peace, Jennifer