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.
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.
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.
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.
So now that my summer break is here I am ready to tackle this Lupus flare. I was referred to a nephrologist only to learn she is booked up until August. It was devastating since I return to school in August. By God’s miracle, I got a call that said she could see me that afternoon and I went no questions asked.
She reviewed my labs and gave me the news I am stage 5 Lupus Nephritis. Not good. No blood in urine, but very high protein. Crazy because I have no symptoms yet.
She is referring me to get a biopsy to learn how bad it is. The biopsy will determine the treatment. It is so disappointing.
The rising cost of co-pays. The fear that my organs are being attacked. Thinking about living with this disease another 40 years…it is frustrating.
All I can do is give it to God and be okay with whatever may come.