Tag Archives: Lupus

Good News Bad News

Standard

Good News

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.

Bad News

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 Difference of a Year

Standard

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

Standard

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!

Kidney Biopsy Day

Standard

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.

Lupus Impact

Standard

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.

Stop Going to Google and Start Going to God

Standard

I do it every time.

Hear a diagnosis then Google it to death.

What I really struggle with is fear, control, the unknown and what-ifs.

God has the answer.

When will I learn to start with Him?

He knows, He cares, He loves.

The end.

To Biopsy or Not Biopsy

Standard

After meeting with the nephrologist, she suggests getting a kidney biopsy to learn the extent of the kidney damage. Originally, I thought this was a good idea, but as I learn more I question if this is necessary. Of course, I want to know the extent of the damage, but will it change the treatment? If not, then can we skip it?

Who knew the biopsy would be considered an outpatient surgery? The cost is very high since my deductible is high. The recovery is longer than I thought. Just wondering if it is necessary. I know this is a result of Lupus so let’s get it under control.

I question if I do not get it, will I miss treatment that is necessary. Who knows. What I do know is Lupus is evil. It attacks healthy cells. It attacks organs. It masks itself as good. It is deadly, painful and rests only to act up again. It is uncurable and induced by stress but our world is stressful.

So for now I pray and wait and hope for a cure and long for a full life not cut short by disease.

Disappointment with AutoImmune Disease

Standard

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.

Lupus Update and Reality

Standard

I got my 2nd chest xray recently and the results of the awkward 24 hour urine test (so gross to capture my pee for 24 hours straight).

The urine test confirmed high protein so now I go to a kidney doctor to get biopsy and learn more. The doctor should be able to put me on the right drug to calm the disease.

The xray showed no progress so they conclude it is not pneumonia, but rather my scoliosis crowding my lungs. It is weird since I had symptoms of congestion and cough and the antibiotics helped. However, the xray revealed just crowded organs with a suggested follow up to be sure.

Basically we have to calm the disease before it continues to attack more organs. I have seen improvement since being less stressed and off of work. Resting more and doing things I enjoy and relaxing. I gained 9 pounds since May. True blessing!!

So now we explore how to help my kidneys and calm the disease so “Lupus will stop doing what Lupus does which is attack healthy cells and your body.”

The journey continues!

Lupus Gone Wild-Health Update

Standard

The hair loss, weight loss, cramps, stomach issues, swollen joints, ulcers, skin rash and night sweats….were all a result of Lupus.

Not a disease.

Not Rheumatoid Arthritis.

Not Celiac Disease.

The Lupus I have always had, just very active. There are still kidney issues that are likely a result of my Lupus gone wild, but Lupus is the disease that created the drama.

So yeah…this disease sucks.