Dancing a Jig of Joy

 

 

The peppy instrumental music in the background made the perfect atmosphere to begin our breakfast cleanup.  I couldn't help but move with the beat.  The five of us were dancing a little jig while laughing at one another's silly dance move or funky little kick that was trying to move to the beat of the music.  It made after breakfast cleanup a breeze.  As the day went on, I didn’t think much of that morning--just busied myself with the tasks for the day.  That evening I found myself alone making dinner, dancing the same jig I was dancing with my little ones earlier.  It felt so good to move freely.  My arms were free to move and flail about, feet were shaking, twirling and a tapping, and my head was nodding to each beat of the music. I didn’t worry about throwing myself into a migraine, or about feeling every bone and muscle hurt, or feel a pressure through my neck and skull that just a few months ago never went away.  I just moved with the music laughing at my own made up moves flapping around the kitchen making dinner.  It felt good to be free again.  Free of constant restriction from the pain that was in my body not too long ago.  When I actually realized what was happening and how I was moving freely without pain or thinking about causing pain, I couldn't help but become overwhelmed with emotions.  They swelled into a stream of joyful tears.  I allowed them to flow freely and welcomed them realizing I was at the beginning of my new life of healing.  I was praising Jesus with tears running down my face knowing He was the ultimate healer and has chosen to use our family in a different way now.  

     Just three short months ago I had accepted our "new" way of living.  We learned how to live with a mama that had Lupus.   Lupus is an autoimmune disease that causes the immune system to see the body's own healthy tissues and cells as foreign, therefore, attacks those good tissues which causes pain, inflammation, and damage throughout the body. I had the tiniest spark of hope that one day I would be better, but as the months went on the pain grew more intense and the symptoms lasted longer. It slowly and eventually drained me of all my energy.  I spent most of my days trying to figure out how to just manage getting out of bed to take care of all the household duties a mama is called to care for.   I had to finally accept a new lifestyle.  Lupus was just another way to live-another way I never imagined I would be living--but we somehow, through God’s grace, figured out how to live with Lupus.

  Since I am not sure who read my last post “Lupus….a blessing?”  I will recap some of what I went through.   Before I was diagnosed I knew something was terribly wrong.  I loved to snuggle on the couch, all eyes buried in the same book, one in my lap and three other little heads surrounding me trying to see the pictures while I read aloud.  Every so often I would find myself not able to connect the words on the page to the words I would speak, fumbling to pronounce simple words.  This startled me, yet I somehow was able to reason it away in my own thinking.   That first year of being overseas the migraines started to last longer.  They would last anywhere from three days to three weeks. We thought it was the fact that my husband had been gone the year before on his 365 and then two weeks from his return we moved overseas.  The stress of a military lifestyle was beginning to take its toll on my health and that was the reason for the migraine increase.   I had times of confusion and not being able to make good judgment decisions for no apparent reason, except hormones.   Every month I felt like a train ran over me so I learned to clear my schedule because the pain was so intense throughout my body and my energy level was to an extreme low I couldn’t even manage taking care of the home.  There were times my body ached so bad that to just get out of bed was a chore in itself.  I was scared because I saw myself not being able to care for my family, my mind was faltering, my decisions were not sound, and my energy was so low that just getting up to shower zapped all of it.  I remember those first weeks when I knew something was seriously wrong.    I had a three week migraine and it hurt to have the sheets touch my body while lying in bed.  My hips felt bruised from being in bed so long and every bone in my body ached.  I knew at that moment something was seriously wrong.

  When I finally dragged myself to the doctor, knowing that it wasn’t "just" another migraine or that I had the flu again, I was thankful for God’s sovereign care with the doctor I was to see. The Lord gave him a compassionate heart and through God’s mercies we got a correct diagnosis.  Once diagnosed with Lupus we were relieved and ready to start treatment to "get better."    I went into the protocol of treatments for Lupus patients and was encouraged to be told that these medicines helped most Lupus patients to go into remission.  Little did I know, the Lord had much more refining for us before I was to find relief.  I meditated on James 1:2-4 “ Count it all joy, my brothers, when you meet trials of various kinds,  for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.”  Remembering that trials produce steadfastness and God does not want us lacking anything (spiritually anything) helped me to keep the pain and difficulties into perspective.  Philippians 1:6 “And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.”    Your prayers were answered and I was thankful the Lord was gracious as he brought many encouragers along the way to remind me of His truths and many hands that were willing to serve by bringing us dinner and watching the children.  The church were His hands and feet faithfully loving us through His Spirit sharing our burdens with us.  There were times that I did fall into self-pity but just as quick as falling into self-pity the Lord drew near to me and reminded me of His loving kindness through the people around me.   I knew in my heart He had a plan.   

  The weeks went by, then months, I was told it would take time for the medicine to start working so I waited...and waited...and waited.  I had few glimpses of hope when a week would go by and I could get out of bed without a heaviness run through my body.  But as the weeks went on the months got worse.  I was given more meds and more pain meds to wait and see if Lupus would go back into remission.  The meds were causing such awful side effects and Lupus symptoms were only getting worse.  I saw how it was taking over my body.   I was beginning to lose relationships-not with just friends-but with family.  The side effects of the medications were mentally exhausting.  I would go from one day to the next feeling sick with pressure in my head and body and literally so irritable. I couldn't stand myself and couldn’t imagine how my family could stand me.  It was not easy for any of us and daily we were praying for our own hearts to trust in the plan that the Lord had for us.  I knew we were being transformed into the image of Christ and for that to happen would mean trials of every kind, yet I was constantly battling the emotions of yelling at my kids for not doing what they were supposed to be doing, I was constantly battling an anxious heart, and a heaviness in my body.  I had to keep reminding myself of His character and that He had a plan and it was a good plan.  Now in hindsight I see much of the emotional strain was due to the medications and the imbalance due to the Lupus symptoms.  I still never figured out how to handle the side effects of the medications that caused such emotions and the heart of knowing God had a plan and His plan was perfect.  I do know we grew little by little in grace and our dependence on Christ and I do know that it was exactly where Christ wanted us.

…So to be making dinner and dancing around the table was not common in my house.  I didn't realize until that very evening how emotionally drained I was from being chronically ill.  So the tears fell and I had begun the process of healing.  The Lord has taken such good care of us during these trying times and I do know His mercies are abundant.  I am thankful to have my health back and to share what the Lord has brought along our path to help with the healing process. 

   

 

     I would have to say that the most important part of my healing was the fact that we were drawn into a deeper understanding of how abundantly sinful we are and how amazingly wonderful the grace of God is. We are most satisfied in Him and I am learning that one baby step at a time.  Every day I tried to grab a hold of my health, or my husband, or my children, only to have them fail me again and again.  Christ was my only hope of security, knowing His love and goodness and faithfulness is what I needed to grab onto in order to sense the peace and security I longed to have.  I struggled to love my husband and children while chronically ill and desperately longed to love them the way my idealistic mind dreamed, but I had to let go of my unrealistic ideals and trust that Christ would love them the way He chose to show them love whether that was through me or somebody else.  I never knew my heart was so secure in the stuff I could see, feel, and do until it was all gone. The little bubble I put myself in became a world of chaos and I finally had to admit I didn’t have the answers.    I couldn’t grab onto my talents to try and "do" better because I couldn’t even use them due to my health failing me.  My family was not meeting my HIGH expectations of who I thought they should become, which made me feel even more like a failure as a sick mother lying in bed not able to teach and train her children like she dreamed she would be able to.  I was lonely because I couldn’t go hang out with friends and even when I did I wasn’t myself because my low energy and pain made it difficult to converse with others.  No, I did not have all the answers anymore.  I was humbled and realized how much my identity rested in what I could do, who my kids were becoming, and even the fact that I could keep a clean house and was fairly organized was part of my identity crisis.  This trial has truly showed me my heart and the crisis I was in.  The crisis of pride and thinking your identity is in Christ until it is all wiped from you, then realizing how very far away you really were.  The character of God, His sovereignty, His love, His goodness, His faithfulness is within reach because of Christ’s sacrifice on the cross.   I now understand that my life is not my own but it belongs to Christ. I am still learning to take me out of the picture and replace it with Him, but that’s a process that we will never stop learning, and that is where my ultimate joy will be found.  ---The joy of the Lord is seeking and resting in Christ’s identity something I don’t have to earn but has freely been given to me. ---

  

That being said I was drawn to my knees daily because I couldn't physically or emotionally  "do" what I wanted to do.  I had to learn to heavily rely on my children and husband to do much of what needed to be done.  God’s grace gave them the compassion and energy to persevere when it would have been easy to give up.   My family members are my heroes!  My husband rose above and beyond in his call to being my spouse in sickness and in health and he has proved to be a true man resting in God’s strength.  I saw what the power of the gospel did every day.  What more could I have asked for- A beautiful, sinful, family ready to rely on Christ for strength and forgiveness and trust in His sovereign care for us.  That’s beauty!

 

                      My beautiful family helping prepare our weekly meals.

     I tried as much as I was able to bring little glimpses of beauty into the home like fresh flowers, candles, and music were a necessity as I worked on keeping the home a peaceful and wonderful place to be in, but I knew that even those worldly yet lovely pictures would not be the beauty that we all desired.  The beauty is when we are out of the picture and Christ is the center.  We were able to live day in and day out with physical pain because Christ was giving us grace to grow and trust in His sovereign goodness.    It was the most difficult trial we had yet faced together as a family, but I am here to tell you that it was a mercy from God.  Yes!  Lupus was a mercy from God.  It was through the hardship of not being capable of relying on my schedule or physical ability to manage life that we were able to get over ourselves and see Him work through us to learn and worship our Savior whether we were doing something great or small.  The Lord is growing me to look beyond self and is helping me to begin to view life through a much clearer lense.   I know I will still struggle because that is just part of human nature, longing to check off lists and do things for God, but with His love wrapped around me I will continue to learn to rely only on Him. 

     Another part of my healing process has been learning how important the food we put into our bodies will determine how we feel.  I am learning how to eat, cook, and enjoy wholesome raw fermented  foods and how necessary a well- balanced alkaline diet is for keeping my body in balance.   I do not enjoy cooking, so over the past two years I have learned how to enjoy cooking with my kiddos beside me.  I have followed some amazing blogs, bought raw foods cookbooks, and tried the best I could to heal my body through my gut.   I didn’t find much relief while eating this diet for a year but had hope that eventually my body would balance itself out and start to heal.  Just after my last post “Lupus…a Blessing?”  a sweet friend shared with me a vitamin regimen they were using that seemed to help them feel better.  The minute I read her note, I quickly looked up the website and discussed it with my husband.  We decided to buy the products and curiously wondered if this would be the miracle we were looking for.  The ideas behind the products were to cleanse my system, balance it, and build healthier cells.  I was at a desperate point,  my white blood count was critically low and getting lower every week to the point of needing to draw blood weekly. I was taking many pain pills daily just to try and manage the household, and I was taking long naps daily to be able to make it through dinner.  We decided to take the vitamins and see what would happen.  After two weeks of this vitamin regimen my white blood count jumped about 2700 levels higher and I started feeling better.   We were astounded.  After a month of being on them I decided to go off my other meds because I was feeling good and wanted to get my body back to normal.  We were so excited to see and feel a difference.  These vitamins were helping my body heal itself.  Just 2 months of being on the vitamins I went off all Lupus meds and pain meds.   I now, no longer have joint pain, muscle fatigue, body aches, and I wake up refreshed and ready for the day almost every day.  I can not only walk up our three story house without needing to stop in between levels to let the shooting pains move through my body before I attempt the next level, but I can actually run three miles and run hard without throwing myself into a migraine, without knee pain and without muscle fatigue.  I still have migraines, but much much less frequent and they don’t last as long.   I am reminded monthly that I still have Lupus and some healing to go through, I see it as my personal reminder from the Lord to look to Him for strength and security, but with a wholefoods diet and really good vitamin regimen I am on my way to feeling healthy again.  I am so excited and know that God has used these vitamins to help my body heal itself. I don't know what the Lord has for our future but for now we are enjoying the freedoms that health gives you. 

 

The Lord hears and answers our prayers.  I know of so many of you praying for us and intervening on our behalf and I want you to know how grateful we are as a family for your support.  Thank you for listening to God’s Spirit and loving us through notes of encouragement,  meals delivered, babysitting, the offer to help whenever we needed it, and most of all the prayers.  We were encouraged by each one of you showing us a glimpse of His love. 

  If you are struggling with your health please know God has not left you.  His plan is perfect. Trust in His goodness, faithfulness, and see His mercies every day.  I am praying for those of you that are in physical pain to be spiritually revived and see God’s hand through the struggle you are in. You belong to a God who will never leave you or forsake you, a God who is living and powerful,  a God who is loving you by changing you so you can have a better vision of who He is. You will not be left seeking and searching for things that will rot and die but you will be drawn into a life of beauty and freedom as you see Him more clearly.  As Corrie ten Boom says, “Jesus is Victor!” Trust in His perfect plan while resting in Christ’s forgiveness which gives you eternal hope and security.   

 

 If you would like information on the vitamins I am taking please message me.  I would love to share with you.

 

 

Memorial Day Weekend

 Memorial day weekend- James played a little ball with his dad.

 Samantha liked the swings.

 Isaac caught a lady bug.

 ...and grabbed a book from the car and read in the grass.

 We also tried some Italian/Japanese food.  Not too bad:)

 ...Isaac found out chop sticks ARE for sword fighting.

 Just before dinner...full of smiles.

 We also went on a hike up San Floriano.

 ...ate some wild Strawberries.

 ...saw a snake.

 ...stopped for a selfie.

... finished the sucker from the market.

...and saw this beautiful bud.

Lupus...a blessing?

    As I opened my eyes, the first sound I heard were the tender quiet voices of my four precious children down below me speaking ever so softly to make sure they would not wake their sick mommy.  I lifted my head and in an instant the excruciating pain shooting through my body reminded me why I was in bed.  I had been having another migraine for three weeks.  My body ached so bad that if the sheets touched my skin I would feel an instant pain.  My hips felt bruised from being in bed for so long, and the pain and energy it took to roll over to my side was enough to keep me still.  I was sick, very sick.  I didn't know at the time what was wrong, but I knew it was more than just another migraine.


     It took weeks after that long and agonizing three week migraine, plus numerous doctor visits and vials and vials of blood, to finally get the diagnosis of Lupus, a chronic, incurable disease.  It might surprise some of you, but to finally get a diagnosis was like lifting a weighted load off my back after climbing a tall mountain.  It was relieving to say the least!  I had my diagnosis and now I thought was the easy part, research to find out about this disease and simply regain my health.  However, I still knew my family needed me and I needed them since it would likely still be a daunting task.  I learned that most Lupus patients can live an active lifestyle nowadays, and this thought gave me hope for our future.  As I thought on the way ahead, my peace and comfort came from knowing we have a mighty, powerful, sovereign God who loves us and is working all things for our good and His glory.  Our weakness through this trial was an opportunity for God to show His strength, and I prayed I would rest on His strength to get us through the zillions of doctor appointments and different medications I would need to go on to try and control this disease.


     It has now been a little over a year and I better understand Lupus and it's effects on my body.  God has not chosen to heal me through that special little white pill that makes many Lupus patients better, but I still rest in His sovereign goodness.  Every month that goes by seems to be worse than the last, and the longer it lasts the more damage it is causing. Lupus is an autoimmune disease, which means my immune system is overactive and confused.  Because it's overactive, it causes inflammation inside my body.  I can tell it's happening through the pain I experience (body aches, fever, flu-like symptoms, arthritis, extreme fatigue...I can actually feel the organ being attacked).  In Lupus patients, the antibodies (that part of the immune system that glues the bad germs together so the other part of the immune system can kill those germs off) are also confused.  My antibodies attach themselves to parts of my organs which makes my immune system attack my organs such as the kidneys, lungs, heart, brain, etc.  It can become very serious, but with modern medicine most Lupus patients have a normal, active lifestyle (I'm not there yet but am hopeful, Lord willing, that I will be well soon).  There is more to Lupus than I understand, and I know I have much more to learn.


    The most recent and scary episode I had was when one day I woke up having to struggle a bit to breathe.  As the week went on, it only got worse.  My lungs felt similar to a balloon, you know that tension you feel when you begin to blow up a balloon.  I felt that tension, only for me I couldn't get the oxygen in the balloon, so I just felt the tension without the ability to blow it up fully.  In the past I've had episodes of not being able to get enough oxygen in my lungs but we wrote it off as allergies (no wonder the inhaler didn't seem to work).  This time around we knew exactly what was going on so the doctor prescribed a steroid. I knew breathing was a necessity to stay alive, so I caved into my ideal world and took the steroids.  I think what helped me cave was my troubled heart watching my children's big blue worried eyes look up at me asking me often if I was going to be OK while watching me struggle to breathe.  The only response I could give them was reassuring them how good God has been to us and to remind them He will take care of us, since He is the one who gives us each breath.  I think this incident has given us a new perspective on our reliance on God for everything.  Due to the attack on my lungs, the doctors have realized my Lupus is not under control yet.  My white and red blood cell count is low, to a point where I need to take blood monthly to make sure it doesn't get any lower, something that's not uncommon for a Lupus patient, but needs to be watched.  They have put me on an anti-malaria medication and an immunosuppressant to try to control the "flares," something doctors call it when the immune system is attacking good tissues.  I'm researching diet change so I can help my body heal itself through my gut.   




     Since this last flare, which has been difficult due to not being able to breathe and going on and off  steroids, I've had time to think about how Lupus has affected our home, our lifestyle, and our relationships.  I would have to say it's been quite drastic, but I am thankful we've had time to gradually adjust to a lifestyle that's a bit simpler, in the sense that my energy level is so low and am in pain many days that I can't say "yes" to those many things outside the home calling my name.  Since most days I wake up with pain, am exhausted, and go to bed with pain, we've adjusted to working around my health. The children are becoming quite independent, sometimes more than I would have hoped for at their age; nonetheless, they have rose above the situation and are doing their part to help our home run smooth.  We still somehow manage to get school accomplished (even with a gentler and much slower wake up time), get food on the table, and get chores done (most days).  Some weeks I feel better than others and we can get into some kind of good routine, but other weeks are difficult which puts us all in survival mode.  We're learning to adjust to a more... might I say... "lived-in" home (OK, a little disorganized).  I just don't have the energy to organize all that stuff  that accumulates and those days that I feel good we spend outside or building our relationships, which is much more important during a stressful time in life.  Organizing will come one day, but not yet. Our social life isn't as active as it used to be and some days are terribly lonely, but I'm seeing friendships transform between siblings that are precious for a mother's eyes to watch. We are learning to be flexible with our outings because any added stress on my body throws me into a migraine that can last, who knows how long, sometimes up to three weeks (my recent migraine was caused by getting my teeth cleaned due to the extra stress of opening my mouth up for an hour and if I don't eat the right types of food or around the same time of day, I'm thrown into a migraine).  Because of the migraines, we've had to leave many outings to get mommy home.  My family has been very supportive and I've had to constantly fight that awful sin of guilt.  Learning to balance my ideals of home life (I'm naturally an idealist), mommy-hood, and being a good wife with a realistic view of our limitations has been more than challenging. The limitations I have now are more than I could have ever imagined, but a reminder that God has a perfect and good plan helps me to be able to accept those limitations.  The stressors in our home these past five years (I've been diagnosed for a year, but have known something was wrong for about five years now) has been wearisome and weighing heavy for all six of us.  I remind myself daily that God is using this very trial to make our home a place that will show Him more glory and change us to become more like Him, which brings peace amongst the chaos.

                                One of the many "breakfast-in-beds" Samantha gave to me.
 One morning I was feeling particularly ill.  Samantha came up to me and gave me her "special" blanky for me to sleep with.  I think that little gesture of love kept me going for that day.

       In the face of the struggles we have been experiencing, there has been a vast amount of grace, hope, and faith.  If we did not know of a God who is, was, and always will be  faithful to His people despite our lack of faith in Him, we would have given up and fallen into the pits of despair.  These last few days I have been able to reflect on the blessing and the spiritual joy Lupus has had on our family.  Yes!!  Lupus is a blessing!  When I reflect on our home dynamics, which is not always pleasant when mommy is yelling at her kids because she is going off a nasty steroid and it's making her emotions hard to control, I see a bunch of sinners who know forgiveness through Christ and are ready and willing to forgive quickly.  When I went to my son to apologize with tears in my eyes and these words were spoken, "Mommy, I know you're having a hard time. It's just the medicine. I forgive you" with hugs and kisses to follow, I cried at the feet of our Savior with gratitude for showing His grace and forgiveness to my family. I see my children are able to overlook sin and have a heart of forgiveness--that is Christ in our home. When I see my bright-eyed beauties wake up and work together to make breakfast for the family and then bring breakfast in bed to mommy with a get well note, I can see compassion and teamwork being displayed--that is Christ in our home. When I see my husband put the children to bed and  pray with them every night and the children pray for mommy to get well and God's will to be done in the situation I can see faith being displayed--that is Christ in our home. When I see my oldest make dinner for her siblings and my second oldest cook breakfast for them joyfully because mommy isn't able to, I see a heart willing and ready to serve where there is a need--that is Christ in our home.  When I see both of my sons stop their play to come and stand by my bed just to see if I need anything and tell me they love me and I see all four siblings hug each other good bye when they are about to depart, I see a bond between family and love being displayed--that is Christ in our home.  When I see the house destroyed because my little ones haven't grabbed the concept to take initiative and pick up and I get embarrassed because somebody has stopped by the house with it looking like a tornado went through, I see God humbling me and little by little pride is leaving my heart--that is Christ in our home.  When I see my husband comes home from a hard days work to a home full of mess and chaos because I didn't have energy to help motivate the kids to clean and he displays patience and grace--that is Christ in our home. God is surrounding us with His grace and love.  I can't help but see Him everywhere I look.  He is using this very difficult trial to make us see Him so much clearer.  I'm thankful God is using Lupus to draw us together as a family to understand Him at a level that will deepen our faith and reliance on Him. God is calling me away from self reliance to be in full reliance on Him and this is where my blessing is found.  There's nothing I can do.  I am sick and in bed all to often.  I know now it's all Him.  It's not easy, but I know God is using this to build the character in our lives we will need in the future so that He can use us to bring the gospel of Jesus to those that do not know Him.  I know there are still trying times ahead of us, but I also know that Our most Gracious Heavenly Father is our strength and will be in the situation using it for our good and His glory.  Lupus is a terrible disease, but God has blessed us in the midst of this trial (in our weakness He is strong)! 

 

 

 Tea time with some lady friends.  This day I was feeling well:)

 

 You'll find Jana often helping Samantha learn some new skill.

 

James 1:2-4  Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.  And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. 

 

San Giacomo church- St. James church just above our house Sept 2013

On this rainy day, we decide to head up to the church just above our house.

Isaac is two in this picture.

This organ was brought from Venice in 1803 to St. Giacomo Church just above our house.  When we went to visit the church, they let us play this priceless musical instrument. 

Ike playing some Bach.  The organ was one of Bach's favorite musical instruments.

The outside of the church above our house.  St. Giacomo (St. James) church

The bell tower goes off at least three times a day.