My routine is pretty simple. A far cry from just 10 years ago. Wake up, prayer time, write, walk into kitchen, swallow 8 pills. See my husband off, get dressed. Daily errands, computer business work, post office shipments for work, bible study, occasional visits with friends, walk the dogs if my legs are cooperating, cook supper, swallow 8 more pills. That's on a good day. Honestly, four to five days a week, throw in a nap. I close my eyes in our den. I always feel so guilty about it. I turn all the recessed lights on. I remain sitting up....if I don't lay down it doesn't count as sleeping right? These are the crazy rationalizations from a former 'type A personality' turned "Lupie".
My husband bought me the most beautiful hand-painted angels, by a local artist, at the beach. I keep them on the window sill in the kitchen. My daily meds are laid atop of the angels. I pray over those pills every time I swallow them. I ask the Lord to heal my body, to protect my body from allergic reactions, to bless the workers who processed the medicines in the lab. For whatever reason God has chosen not to heal me yet. Those wooden angels remind me to pray for my healing as well as family and friends who need healing. To pray for the people concocting the pills that keep me going. To pray that I will be used to help someone else. That there is a purpose to all of this.
Let's go back to God not healing me (or healing many of you reading this). There are several schools of thought. One is that if we pray hard enough God will heal us. If we believe that His grace is sufficient enough. Then there are those who think they have done something "bad" in their lifetime to deserve illness. The thing about this misinterpretation is that not only does it tell people that it may not be God's will to heal them, but it actually makes the person accept, welcome, and be thankful for their sickness. Being thankful for sickness can be construed, by others, to mean that you believe you aren't heal-able.
I've been all over the map. I have believed in the word of faith movement for healing. I've believed Grace was enough to heal me. When it didn't happen? I believed I deserved this. The fact of the matter, for me, is I no longer need a reason. Am I happy that I have an incurable disease? Uhm, nooo. But I do. So since I do shouldn't I be using my experiences to bless someone else? Yes, of course! Do I believe that God can heal me? Why, yes! Am I expectant for his healing? Not really. I don't think it's about my physical healing anymore. If it happens? Praise God! If it doesn't? I know I will be whole and perfect in heaven for all eternity.
I miss my independence. I can't just drive off to any destination, on a whim, by myself anymore. I have to make sure my husband or kids are in the town I'm traveling too. Monday, for instance, I had my nails done in the town my husband works in. I pinched my finger and the technician put an ointment on it. Within seconds my throat got scratchy. I asked to see the ointment. It had lidocaine in it. Like many with Lupus I've developed unexplainable allergies. I called my husband, popped two Benadryl and sat in his office until the antihistamine kicked in. Next I had to do a nebulizer treatment to open my lungs back up. Did I mention that I left the house without the nebulizer machine? Everywhere I go I have to have that machine, an epipen, Benadryl, rescue migraine medicine, flexeril for random muscle spasms, a coat or jacket for when my circulation stops and my lips and hands turn blue, an emergency card in case I loose speech with contact names and medicines.
I miss being a reliable and spontaneous human being. This past weekend my husband had planned a romantic weekend to the Outer-banks. I woke up Friday with a fever and kidney infection. We cancelled the trip and lost our deposit. I can plan nothing long term. From day to day my symptoms change. One day I'm fine. The next day my legs may feel like sandbags making it impossible to walk unassisted. One week I may be in bed with blinding migraines. One week I may be so visibly filled with fluid that I can wear nothing but sweatpants. One week I may have blisters and sores all over my face and extremities. One day I may have a really ugly updo because that morning I've had a clump of hair fall out exposing sores in my scalp. One morning I may have such debilitating nausea that I have to pop phenegran all day.It makes you sleepy. If I had plans that day I'll have to cancel them. One year I may be bone thin. The next year I may be 30 pounds overweight. I can no longer just go out to dinner and just enjoy. My order becomes a production making sure the chef knows I have a life threatening allergy to shellfish and gluten. My phone beeps to remind me where and when I'm to do something or be somewhere. The brain fog that comes with Lupus is akin, I'm told, to early onset Alzheimer's. I literally have no control of what, why, where or when my body will attack itself.
I've learned who my true friends are. The ones who love me. Know that I may cancel on them 10 minutes beforehand. The ones who call me because they know I often forget to call them. The friends who love me for me. I've learned to appreciate a good day. I'm in awe of God's sunrises and sunsets. I've learned to cherish ordinary moments. Where as a few years ago everything was just a check list. I've learned that being alone sick is not alone. It's a time to intentionally send letters to those you love. It's a time to enjoy reading God's word. It's time to just "be" because I'm still here.
My focus has gone from "why me?" to "why not me?" to "OK, Lord, it is what it is. What do I do with it?" For now, it's eight pills a day. Twice a day. Every single day. Forever. What I choose to do with the circumstance is in my control. Nothing else seems to be. But my response is my choice. Right now I choose to be steadfast. Either way, in the end, I win. Because one day I will meet my Maker. I will fall down in awe of His majesty. And all this? It will be gone.
"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him"-James 1:12
