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.
Sometimes the hardest thing about Lupus is not the disease, but the medication for the disease. I was coming down with a cold which means disaster for my body-think aches, fever, muscle cramps, fatigue, sore throat…all for a cold. So I had to increase my steroids by a lot…I mean a lot a lot and the return is what we call steroid face. A necessary evil. You feel better, but look worse as your face appears to swell overnight.
I am thankful to God for the medications needed to live and wish I was not so vain…but it does stink what it takes to stay healthy-it .is.hard.
On a positive note, I gained weight and my hair is growing. I feel better and less depressed so life is good today!
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.
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!
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.