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)!
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.
