Cellcept wasn’t working, causing my protein to spike to over 5,000 when it should be under 200. So we switched to Tacrolimus and we wait and see.
Returning to teaching is never easy, especially since I am still struggling with an infection, enlarged spleen, kidney problems, and my voice is still shaky after losing it for 3 weeks! My Lupus body is fighting something. Cellcept suppresses my immune system, so it is hitting me hard. But I get one of the best jobs with 2 weeks off to rest and recover and I am grateful.
Laid up in bed because my coughing has put a pain in my side that makes it hard to move painlessly. Pretty sure it is inflammation creating tightness in my ribs, but boy it hurts when I cough! Thankful to have this week of rest and recovery.
Some days I feel good….some days I don’t. Here lately have been “don’t days”. Sore throat, no voice, blah hair and skin, fatigue, coughing.
But then I get a good sleep, wake up refreshed and it can flip to a do-feel-good-day. Thankful for days like today.
The Cellcept is working. Glory to God for an answer to prayer. Two months ago, blood tests showed no change in the protein in the kidneys. We decided the “wait and see” method. Thankful we did. Most recent reports show a huge drop in protein (4000 to 1500). Still a lot of protein, but decrease shows promise. I still do not feel 100%, but I never will with Lupus. I do have lots of reasons to keep hoping and fighting and praying for a cure.
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!
The kidney biopsy went well and the results showed what we expected. The plan is to increase medication then taper down as hopefully the kidney function starts to improve and Lupus calms down.
You can view the Tik Tok in the link above.
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.
My kidneys are worth it!
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.
…but I have to wait until Wednesday to get them.
We have them, but you must wait until our appt.
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.
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.