I gained 10 pounds (108 from 98), hair is not longer-but is thicker, feel less fatigue and more joy, no joint pain at all…overall just feeling better.
Hair still is breaking-may be early menopause more than Lupus, immune system is struggling to not get sick, latest bloodwork shows the kidneys are still full of protein despite a month of medication, I now have triple the cholesterol that I should have due to the protein.
We are upping the meds and giving it time, so keep the prayers coming.
Getting the news was expected, but still hard as I am pretty sensitive to medication I think due to my small frame. I call myself a one-percenter. If it has a small chance of happening…even one percent it happens to me. Fever blister, infertility, hair loss, eye inflammation, dry mouth- me, me, me.
So the journey to start 25mg of steroids daily (a lot!! get ready moon face) and 2000mg of Cellcept…an immune system blocker so mask up begins today.
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.
As I wait patiently I want to shout out the amazing people that loved, encouraged and made me feel seen. From meals, to gifts, to childcare, to texts (they know not to call), to prayers…this is community! This is Jesus. This is love. This is the church as Christ designed it to be-His hands and feet.
Happy Adoption Day to Callen! 9 years ago yesterday we made his Adoption official in a courthouse in Houston!
Had another appointment with a Rheumatologist and it is getting expensive with co-pays! Found more protein in the urine so now we do a 24 hour Urine test which is gross and kinda tedious. Holing to find more answers!