Kidney Biopsy Day

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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

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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

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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

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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.

Special Needs Struggle

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All over social media proud parents are sharing STAAR testing success stories. Well here is mine!

Number one-my son showed up. No opting out. No playing sick. No fear or dread. We took the test and did our best.

Number two- he had no chance of passing unless he guessed well and then that would have been a shocker but no indicator of his reading or math level.

Number three-this test does not even almost tell me what he is capable of doing independently and hardly accommodates to his disability of being a slow learner 2 grade levels below 3rd grade or his IEP. If you want to know what he can do then give him a first grade test.

Even growing next year just proves he guessed better than last year. All this test does is gives a number to a failing system and makes teachers test prep as a form of curriculum.

We can do better Texas.

Disappointment with AutoImmune Disease

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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

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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!

Perspective is Everything

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Summer fun can be exhausting. Getting up early, going from lesson to playdate to camp…being in the car from 30 to 45 minutes at a time depending on traffic. Doing all I can to make memories and do all the fun stuff while school is out. Keeping cool in this heat…fun, but tiresome.

I was expressing this thought to my son’s tutor whom is a widow and all three of her boys are grown and out of the house. Her response surprised me.

She said the busyness traveling in the car is what she missed the most about raising kids. She explained the time she spent talking, laughing and going to all the places for the summer are the memories she holds dear to her heart. Being all together in the car is priceless.

It made me stop and think the thing that exhausts me is what she misses. I should learn from her and change my perspective and find joy in this phase of life. Appreciate the talking, the questions and the places we travel together. Value this moment in motherhood.

Don’t miss the memories we are making. God has given me this child for this moment and I refuse to miss this opportunity by not appreciating how blessed I am. So thankful this lady could unknowingly mentor me and change my perspective before it was too late.

Golf even if you suck!

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I suck at golf. The guys behind us confirmed our slowness but we did it anyway. No practice and way too much confidence but we finished and laughed and kinda loved it despite 104 temps.

Whose idea was this? Oh wait….it was mine.

Bought a cute outfit. I was on point

Was I the best? No where near it. But we laughed, took pics, made new friends, had an adventure.

Live life and have a blast!!

Lupus Gone Wild-Health Update

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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.