The God of your disappointments is still your God. The hardest part is letting go of the pen so He can write the narrative.
I just returned from a week in Mexico.
It was gorgeous, relaxing, adventurous, fun and much needed. I always plan it the week before I return to school as a last way to recharge, reflect and get ready.
The sun, blue water, time for self care is good for my soul. Seeing the Lord’s work in nature and taking the time to listen to what he is saying with new opportunities is a gift.
But this trip hit different because a year ago today my life changed when my marriage changed along with a stressful year in education (see other post about change and reforms in school). In this last year, the stress of all the changes restarted my body to get sick-very sick and it was obvious if you looked at me for the first time ever.
The butterfly rash, psoriasis, weight loss, eye inflammation, dental issues…all the symptoms came roaring back. The hardest was the weight that caused people to ask if I was okay and the hair just getting thinner and shorter without being cut.
It led to two new medications and finally tests and a biopsy.
Pictures do not lie! I usually pull it back, but this night I got feisty!
I often want to step out of the picture or refuse to take it, but I will not let pride and vanity win. This.is.me! This is my season of sickness. It is rough, but my reality. So I will show my confidence and continue to take the selfie or portrait. I an more than my appearance. I hope I inspire young girls that think they are fat or ugly to be confident and brave.
The hair will grow back or I will invest in wigs and hats. This is Lupus and the world needs to know…even Virgin River had a story on the disease!
So I start these meds today and wait patiently for a cure and hopefully an answered prayer with little to no side effects and some relief.
Pray with me!
Today was the virtual consult with the nephrologist. The biopsy revealed the Class 5 Membranous Lupus we were expecting. This was good news since the kidneys were not worse than we thought. The medications will be intense. 2000mg Cellcept daily and 25 mg of steroids daily.
Nervous if similar side effects will occur like last time causing my hair to fall out, lip blisters and overall decline in my weight and health. This drug is most famous for the stomach issues which is a struggle when you are trying to gain weight. Overall, my biggest fear is just struggling to stay thriving. Fatigue is real on these medications! But, this is a fight for a major organ so I will suck it up and follow doctor’s orders.
I serve a mighty God! I serve a God that saves and goes with me. Today made me feel frustrated that we have to get serious with medication right before I start back to school where my stress kicks in the highest…so afraid of going backwards and just feeling beat down when I need to be stepping it up. But I will trust in God’s promise that he goes before me, stay grateful for the good things he has done and remain hopeful for a cure and better tomorrow with Lupus.
Who knew a kidney biopsy would be so invasive? Today was the closest I have ever been to surgery. Fasting, pre-op, sedation, IV then bedrest and no driving.
Overall, it went much smoother than expected. With Lupus and Rayneuds, you never know how your body handles stress. My husband took off to be my personal driver and nurse.
So now I follow recovery orders and stay out of the water, no driving, no exercise, no heavy lifting and wait for the results. Praying meds can get it under control and no further treatment is needed.
This journey has taught me to do better about avoiding stress or at least reducing it. It also humbled me that my Lupus is active and the effects are real. Celebrate the good days and take care of myself.
Praising for the faithfulness that God is in control. His word and worship has kept me going. Love of family, friends and strangers reminds me that God created us for community.
Organ damage hit me hard, but will not knock me out.
Here are just a few of the things an auto immune disease will attack in an attempt to fight off invaders:
Hair-thinning, falling out, bald spots on scalp, dry and brittle
Eyes-itchy, burning, blurry vision, inflammation
Skin-dry, rashes especially on face, psoriasis
Mouth- ulcers (the worst) cavities due to being too dry or too much bacteria
Joints-aches, pains, stiffness, deformities, loss of grip, cannot move arms above head, hard to walk or bend at the knees, hard to dress
Blood-anemic, easy bruising
Reproductive-can cause infertility, dryness, overgrowth of bacteria
Organs-failure of vital ones, hard to breathe, chest pain, lung inflammation
Digestive-weight loss, foods hard to digest, IBS, watch what you eat-sensitivities
Brain-forgetfulness, depression, brain fog
This is a list of things I have endured in my 12 years with this disease.
Thankfully not all at the same time and thankfully meds can help alleviate much of this.
My hope is in Jesus. I am thankful I have a promise of eternity and faithfulness in a cure or in a plan or purpose for my pain. Prayer is powerful.
I do it every time.
Hear a diagnosis then Google it to death.
What I really struggle with is fear, control, the unknown and what-ifs.
God has the answer.
When will I learn to start with Him?
He knows, He cares, He loves.
Summer fun can be exhausting. Getting up early, going from lesson to playdate to camp…being in the car from 30 to 45 minutes at a time depending on traffic. Doing all I can to make memories and do all the fun stuff while school is out. Keeping cool in this heat…fun, but tiresome.
I was expressing this thought to my son’s tutor whom is a widow and all three of her boys are grown and out of the house. Her response surprised me.
She said the busyness traveling in the car is what she missed the most about raising kids. She explained the time she spent talking, laughing and going to all the places for the summer are the memories she holds dear to her heart. Being all together in the car is priceless.
It made me stop and think the thing that exhausts me is what she misses. I should learn from her and change my perspective and find joy in this phase of life. Appreciate the talking, the questions and the places we travel together. Value this moment in motherhood.
Don’t miss the memories we are making. God has given me this child for this moment and I refuse to miss this opportunity by not appreciating how blessed I am. So thankful this lady could unknowingly mentor me and change my perspective before it was too late.
One of my favorite things to do is work in the preschool at church. I get to love on babies, play with toddlers, tell little ones about Jesus and SHOW them God’s love on display. Tell each kid that Jesus knows his or her by name.
I get to give parents an hour to worship undistracted by little ones. My time with their children help ls them to feed their souls. Is it loud and crazy…oh yes. But is it important?
Nothing else matters.
The kingdom belongs to these littles. We must be careful to train up the next generation so the church carries on until He returns.
Be the church wherever you fit in using whatever gift He bestowed upon you.
It is everything right now.
This is a pic I saw on our class field trip to the Wetlands. It was an illustration of how the roots of the plot are anchored in the soil and will not be moved. It was beautiful and a visual of who I am in Christ.
I am rooted and anchored in the soil of God. His nutrients grow me as I am firmly planted in him. My roots keep me from flying away in the wind or drowning in the rain. Lord willing I will produce fruit or flowers as I abide in Him. What a brilliant illustration of our journey with God.
Rooted in Him I am.
Today I go to two doctors to check on symptoms of inflammation. One is an eye doctor…my eyes have been on fire lately and the second is my regular check up to see if the Methextrate is working or we need to try something new. Many Lupus drugs have serious side effects, so I need to be careful and check blood work often.
Going to the doctor today got me thinking about all my flares the past ten years. I often get asked “What does a flare feel like?” My response is “Which one?”
My first flare was my worst…achy joints, high fever always, weight loss, fatigue, cold all the time. We started Plaquenil and within three months I was feel good again…a new norm of anemia, infertility and fatigue always, but not hurting.
My second big flare was achy joints, fatigue and hair loss. Patches of bald spots and an itchy scalp that kinda surprised me since I did not know my hair was connected to auto immune issues
My third big flare was my scariest. Lung inflammation. I felt like I was going to have a heart attack. I could not catch my breath and my chest hurt. Again, no clue my lungs could be connected to my Lupus.
This one has lasted the longest…mirrored more Rheumatoid arthritis than Lupus. It caused me to change my meds to focus on joint pain rather than fatigue. It caused my hands to go crooked and surprisingly has impacted my eyes. No clue if it is inflammation or allergy or random coincidence but my eyes have been burning. This flare also impacted my weight and fatigue and now thinning hair. A big surprise is the new inflammation in my stomach…food does not process which makes me feel malnourished.
The crazy thing is insurance causes me to need referrals and it is hard to know what can be treated with a GP versus a specialist. So much is determined by Lupus and is just confusing. So my goal today is to get answers and maybe a better plan. I feel good mentally, but Lupus can cause depression too and I have had that this time as well. Pray that God leads me to answers and wisdom today!
I am blessed with all the advancements in this tricky disease. I am learning to accept myself at my lowest weight, infertile, bruised from blood thinners, thin hair that does not grow out and feeling tired all the time. Learning I am who I am with this disease. No one can truly understand it through my eyes and what I go through each day to make it to the next as a mom and teacher and wife…but God is using this for His glory! Adoption and more has been a gift in this and I am not dead. I have felt like dying is near at times or even frustrated that my quality of life at 42 is so different …if this is 42 what will 62 feel like…will I live to see 72? Does my child get the mother he deserves?
In it all, I will take this life and live it awake. I will appreciate what I do have through a support system and medical team. God is good!
Today I am focusing on Psalm 136:1. I am giving thanks to God. Thankful for my body. Thankful for my medical team. Thankful for prescription drugs. Thankful for a supportive husband. Thankful for prayer. Thankful for days to take off for the doctor. Thankful for the beauty in the ashes. Thankful on purpose.