Category Archives: Cellcept

The Difference of a Year

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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!

Medications Begin

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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.

https://www.tiktok.com/t/ZTRDpfBYw/

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!

Biopsy Results

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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.

Looking sick vs Being sick

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I am sick. Lupus does that to you. Most days I do not mind. Most days my disease is manageable. On the hard days, it sucks, but all in all I am blessed. My struggle is silent. I go to work daily. I rarely complain. The people who know the truth are my son and husband. They feel the weight of my lack of energy and overall fatigue. Sad, but true. My job gets the best I can offer while my family suffers.

I started with Plaquenil and it worked until it didn’t. Methotrexate was a no go after a few months. Cellcept lasted a month, but I am stopping it due to excessive hair loss. I am sick, but I refuse to look sick.

This was a good pic of me in November. Hard to believe that was 3 months ago.

I have such thick hair that the hair loss is still somewhat disguisable, but I see it and feel it.

This is Lupus. It is sneaky and complicated and can bring even a confident person to their knees. I am stopping Cellcept until we can start something else. I am willing to endure the temporary pain. Pray with me as we figure this out. I think Benalysta may be next.